Intersubjectivity is our experiences of one another
It isn't possible for us to understand ourselves without understanding how other people see us. Intersubjectivity is an integral part of what I do in therapy. Very frequently people come to therapy with a distorted image of themselves and a distorted image of other people as well. Everyone has an internal working model of the world. It is a way of looking at the world, ourselves, and other people that guides our behaviors and our feelings. Most people have an internal working model in which they see themselves as a good person, the world as a safe and caring place, and other people as caring and responsive. We developed this internal working model largely through our experiences with our caregivers. Intersubjectivity is also responsible for creating and maintaining our internal working model.
When a client comes to me with a belief that they are bad people and that the world is a bad and scary place, my experiences and sharing of those experiences of them and their experiences of me are a crucial part of changing that negative internal working model. I always say that a very large part of what I do is to let people know how wonderful and important they are. They need to know that there is a safe place for them to share and they need to know that someone will listen and really attempt to understand their viewpoints. This is a lot harder than it sounds. I must unconditionally accept everyone or it won't work. That means accepting and understanding that negative working model first. You can't get someone else out of the hole unless you are willing to go into the hole yourself!
My own internal working model, although it has been challenged by my multiple sclerosis, has also been something that carries me through the rough patches. I believe that I am a good person who is capable and competent. Although I may not be capable doing some of the things I used to, I am capable to choose how to manage myself in a different body. That is why sometimes, I don't want help if I fall. The other day I fell down in the vestibule of the gym where work out. I was capable of pulling myself up by the door handles. But at least two people came and tried to pull me up. Actually the one guy did pull me up. This was a gym after all! And while I do appreciate it, in some ways, it takes away my sense of being capable of taking care of myself. Perhaps this is selfish, but I do not want people to see me as someone who does not know how to take care of myself. Now don't get me wrong, there are times where I really do need help and have no qualms about asking for it. My internal working my model of the world is that it is safe and caring place. So intersubjectively, I believe that you are a caring person who does not like to see people get hurt and I appreciate that. So please, understand me and others who may be struggling, as a person who does not want to give up any more of my sense of being a capable person. Pity does that, empathy does not.
Becoming handicapped is scary because I know that people see handicapped people as objects of pity and helplessness. Please believe that handicapped people are no different than you just because they look different from you. I want the same dignity and respect as anyone else.
Intersubjectivity is how you experience me and I experience you. This can only be changed through interacting with each other. Why you just reading this, you are gaining an understanding of me and I hope that you will get an understanding of what it's like to be someone who is different from you and yet exactly the same as you.
Saturday, December 29, 2012
Thursday, December 27, 2012
Change
Have you made your New Year's resolutions yet?
Making a resolution denotes a choice to change something in your life that you think will somehow make your life better and more comfortable. Lose those last 10 pounds... work out more often... donate more money to the poor....
But, I think that the changes that truly make a difference in our lives are not necessarily ones that we cognitively decide to make. The changes that really make a difference are usually the ones that we don't decide to make on our own. It's the unexpected challenges in our lives that are more likely to result in a lasting change.
I didn't decide to get MS. This was a change that was unexpected and outside of my ability to choose. I will never jubilantly state, "This year I am going to get MS!".... But this is a change in my life that allows me to make a choice about how I'll manage myself. Every moment of every day for everyone, changes occur whether we like it or not. And in every moment of every day, whether we choose those changes or not, provides us with an opportunity to decide how we're going to respond to those changes. I think those choices and resolutions are much more important than the resolutions we make at the beginning of the year!
When having MS creates a new and interesting challenge, I get to decide what my reaction will be. Emotions occur following a thought. If I think, "my life is so crappy because of MS" (which would not be an unusual thought for me) the emotions that follow will be anger, self-pity, sadness.... These emotions are just energy passing through my body and when they occur, I get to decide how to respond to them. I can decide to change my thought from, "my life is so crappy because of MS", to " MS does some crappy things in my life, but my life is not crappy because of it". And then I can also decide how to respond to those thoughts and feelings. I can choose to lay into bed and pout about how unfair life is, or it could have a temper tantrum, or it could remember the positive things about my and think about all the things I can still do.
I have already recounted the positive things about having a chronic illness. But the most positive change is much more subtle than getting good parking! A positive change has been an opportunity to choose a joyful disposition about the world. I am not trying to be anybody's role model or some kind of an inspiration. I'm just trying to make my life worthwhile and meaningful for myself. I think that this is a goal for everybody, or it would be nice if it was, so I am just doing what I would be anyway. I'm just having to find creative ways to do it!
So I am choosing to see this challenge as a rare opportunity to find new meaning in my life and in the world. Would I choose to have MS again if I could? Probably not. But would I choose the lessons I learned because of MS? Definitely.
Now in the meantime, I resolved to blog more often!
Making a resolution denotes a choice to change something in your life that you think will somehow make your life better and more comfortable. Lose those last 10 pounds... work out more often... donate more money to the poor....
But, I think that the changes that truly make a difference in our lives are not necessarily ones that we cognitively decide to make. The changes that really make a difference are usually the ones that we don't decide to make on our own. It's the unexpected challenges in our lives that are more likely to result in a lasting change.
I didn't decide to get MS. This was a change that was unexpected and outside of my ability to choose. I will never jubilantly state, "This year I am going to get MS!".... But this is a change in my life that allows me to make a choice about how I'll manage myself. Every moment of every day for everyone, changes occur whether we like it or not. And in every moment of every day, whether we choose those changes or not, provides us with an opportunity to decide how we're going to respond to those changes. I think those choices and resolutions are much more important than the resolutions we make at the beginning of the year!
When having MS creates a new and interesting challenge, I get to decide what my reaction will be. Emotions occur following a thought. If I think, "my life is so crappy because of MS" (which would not be an unusual thought for me) the emotions that follow will be anger, self-pity, sadness.... These emotions are just energy passing through my body and when they occur, I get to decide how to respond to them. I can decide to change my thought from, "my life is so crappy because of MS", to " MS does some crappy things in my life, but my life is not crappy because of it". And then I can also decide how to respond to those thoughts and feelings. I can choose to lay into bed and pout about how unfair life is, or it could have a temper tantrum, or it could remember the positive things about my and think about all the things I can still do.
I have already recounted the positive things about having a chronic illness. But the most positive change is much more subtle than getting good parking! A positive change has been an opportunity to choose a joyful disposition about the world. I am not trying to be anybody's role model or some kind of an inspiration. I'm just trying to make my life worthwhile and meaningful for myself. I think that this is a goal for everybody, or it would be nice if it was, so I am just doing what I would be anyway. I'm just having to find creative ways to do it!
So I am choosing to see this challenge as a rare opportunity to find new meaning in my life and in the world. Would I choose to have MS again if I could? Probably not. But would I choose the lessons I learned because of MS? Definitely.
Now in the meantime, I resolved to blog more often!
Monday, December 24, 2012
Capitol Caroling
Capitol Caroling is something totally unique to Jefferson City Missouri.
Capitol caroling is a long-held tradition in Jefferson City and is something that denoted the beginning of the season for me. Capitol Caroling is the Jefferson City high school holiday concert which takes place in the Capitol building of Missouri. The Capitol in Missouri is very beautiful with a huge rotunda and double staircase leading up to the second floor. It has a balcony looking down from near the top of the rotunda as well. In Capitol caroling, the choir stood on both of the staircases and that the top balcony overlooking the bottom of the rotunda. The orchestra and bands sat on the floor in front of the audience. The acoustics in the capital are truly exceptional.
The first time I went to Capitol caroling after we moved to Jefferson City, was before I was a participant. But I still remember the grandeur and the beauty of the building and how moved I was at the music. There was a solo by someone named Sylvia Morris who sang "Sweet Little Jesus Boy". She had a truly amazing voice is probably still singing to this day although I don't know.
My turn came to be part of Capitol caroling in my freshman year. I was in the orchestra so I got to play, and there was a freshman girls choir and I sang in as well. The freshman choir stood around the balcony way up in the rotunda. I specifically remember this because I'm sort of afraid of heights so looking down from the top of the rotunda was very scary to me, but my desire to sing overrode my terror of being so high up above everything!
The choir was conducted by Mr. Carl Burkle who was amazing in its own right. He died about 15 or 16 years ago, but there is no way I can separate his memory from Capitol Caroling. He'd lived and breathed music and beauty. He loved the holidays as well. He had a Christmas tree on a spinning stands so that you can see the thousands of ornaments that he'd collected over the years. He had one that he'd made out of a sliver of wood. He said that he "received" the sliver when he was in Germany. He had the opportunity to play on the organ on which "Silent Night" had been composed. He said that when he slid onto the old bench, the sliver went through his pants and he later rescued it from his backside and put it on an ornament! That was pretty racy for Mr. Burkle!
Capitol Caroling was narrated by one of the students. For the first three years that I was in high school it was narrated by someone named Sam Trower who had a remarkable voice. My friend Randy used to do a great impression of him saying dirty limericks!
I remember, also, the year that I had to run back and forth between the orchestra and the choir and I almost passed out! I know Mr. Burkle saw me because he stared at me until I managed to pull myself back together.
But my best memory was being able to sing a solo my senior year. It wasn't really a solo, but rather a duet with my friend Cindy Ferrell. The piece was Haydn's Jungedemasse or Young People's Mass. It had four or five movements with duets interspersed throughout. Mr. Burkle loved the Vienna boys choir and tried to get us to emulate the pure tones of the treble voices. Cindy's voice had that sound. I was less successful at that, but our voices blended well and the piece was the highlight of the concert.
I used to have a record of that concert. It was recorded every year. But somehow my copy of the album has been misplaced and it's probably a moot point anyway since we no longer have a turntable on our stereo!
Being able to sing is something I really miss. Some of the reason for not being able to sing anymore is just lacking the opportunity. Some of it is just age and aging vocal cords. But some of it I can attribute to the MS. Vocal cords are muscles and mine are as flexible and responsive as they once were. I know this is due to MS because I was still singing in the choir at St. Paul's United Church of Christ when I was diagnosed and I could tell that singing was no longer an easy thing for me to do.
I recently attended a concert in St. Louis. It was at a beautiful Basilica with choir and orchestra and it reminded me of Capitol caroling, complete with the audience carol sing-along! My mom, who paid for the concert as a birthday present to me (thanks Mom!) Said I still sounded okay when I was singing carols. But I can tell the difference in the tone and the ability to stay on pitch!
I'm pretty sure they still didn't Capitol Caroling, and I'm sure it is still beautiful, but it just wouldn't be the same without Mr. Burkle or my vocal chords!
I hope you all have a very wonderful holiday.
The first time I went to Capitol caroling after we moved to Jefferson City, was before I was a participant. But I still remember the grandeur and the beauty of the building and how moved I was at the music. There was a solo by someone named Sylvia Morris who sang "Sweet Little Jesus Boy". She had a truly amazing voice is probably still singing to this day although I don't know.
My turn came to be part of Capitol caroling in my freshman year. I was in the orchestra so I got to play, and there was a freshman girls choir and I sang in as well. The freshman choir stood around the balcony way up in the rotunda. I specifically remember this because I'm sort of afraid of heights so looking down from the top of the rotunda was very scary to me, but my desire to sing overrode my terror of being so high up above everything!
The choir was conducted by Mr. Carl Burkle who was amazing in its own right. He died about 15 or 16 years ago, but there is no way I can separate his memory from Capitol Caroling. He'd lived and breathed music and beauty. He loved the holidays as well. He had a Christmas tree on a spinning stands so that you can see the thousands of ornaments that he'd collected over the years. He had one that he'd made out of a sliver of wood. He said that he "received" the sliver when he was in Germany. He had the opportunity to play on the organ on which "Silent Night" had been composed. He said that when he slid onto the old bench, the sliver went through his pants and he later rescued it from his backside and put it on an ornament! That was pretty racy for Mr. Burkle!
Capitol Caroling was narrated by one of the students. For the first three years that I was in high school it was narrated by someone named Sam Trower who had a remarkable voice. My friend Randy used to do a great impression of him saying dirty limericks!
I remember, also, the year that I had to run back and forth between the orchestra and the choir and I almost passed out! I know Mr. Burkle saw me because he stared at me until I managed to pull myself back together.
But my best memory was being able to sing a solo my senior year. It wasn't really a solo, but rather a duet with my friend Cindy Ferrell. The piece was Haydn's Jungedemasse or Young People's Mass. It had four or five movements with duets interspersed throughout. Mr. Burkle loved the Vienna boys choir and tried to get us to emulate the pure tones of the treble voices. Cindy's voice had that sound. I was less successful at that, but our voices blended well and the piece was the highlight of the concert.
I used to have a record of that concert. It was recorded every year. But somehow my copy of the album has been misplaced and it's probably a moot point anyway since we no longer have a turntable on our stereo!
Being able to sing is something I really miss. Some of the reason for not being able to sing anymore is just lacking the opportunity. Some of it is just age and aging vocal cords. But some of it I can attribute to the MS. Vocal cords are muscles and mine are as flexible and responsive as they once were. I know this is due to MS because I was still singing in the choir at St. Paul's United Church of Christ when I was diagnosed and I could tell that singing was no longer an easy thing for me to do.
I recently attended a concert in St. Louis. It was at a beautiful Basilica with choir and orchestra and it reminded me of Capitol caroling, complete with the audience carol sing-along! My mom, who paid for the concert as a birthday present to me (thanks Mom!) Said I still sounded okay when I was singing carols. But I can tell the difference in the tone and the ability to stay on pitch!
I'm pretty sure they still didn't Capitol Caroling, and I'm sure it is still beautiful, but it just wouldn't be the same without Mr. Burkle or my vocal chords!
I hope you all have a very wonderful holiday.
Saturday, December 22, 2012
forgiveness
I've been thinking about forgiveness recently
Specifically, have a client who is incredibly anxious. She frequently responds to her anxiety they becoming obnoxious, aggressive and angry. Her behavior is actually fueled by what we call cognitive distortions or wrong thinking. After a great deal of patient exploration I almost always find some idea that she has committed some horrible sin and that her parents and God will not forgive her. Sometimes she just thinks God will not forgive her and that she needs to punish herself by keeping her parents from loving her. She is angry at herself, but mostly she is terrified that she's going to Hell.
She knows, from frequent experience, that I and her mother will always love her and forgive her any behaviors, but she still wonders about God. I am mystified by the thoughts that anyone could think God is less capable of forgiveness than a mortal.
I am also flabbergasted by any church which proclaims to be Christian, could espouse such hatred in the guise of being the Word of God. It would be so easy to dismiss this or to make statements of hatred toward the haters. But what God really wants us to do and what is absolutely necessary to do in order to stop the cycle of hate and disconnection, is to choose a reflex of compassion and forgiveness.
Sometimes, it is much easier for me, and really I believe her most people, to forgive others than to have that same reflex of compassion and forgiveness for our own behaviors and shortcomings. MS requires a constant state of compassion toward my body and its inabilities. It requires a constant state of humility. It requires a constant state of accepting kindness of others.
I wish for all who are unable to recognize beauty of the world and the beauty of others, the ability to recognize their own inner turmoil. All hate starts with fear. All misguided deeds start with fear.
Fear of lack. Fear of disconnection. Fear of death. Fear of loss. Fear of humiliation. Heck, it could even be fear of being eaten by bears.
Every day I have to choose. I can choose to succumb to the fear of being invalid in the world. Or I can choose to see that I possess the ability to exist in joy and love. Actually, it is a choice that we all have to make whether we have a chronic illness or not!
I choose to forgive those who act out their anger and fear in whatever form it may take. I choose to forgive myself.
I hope that you are having a wonderful holiday and hope that you are able to share it with those whom you love. I hope that if you are having a conflict with someone you, you will decide that the relationship and love outweigh the conflict and that you reach out to them without fearing that they will think that you are weak for being the first one to give in.
I know this post is a little maudlin and sappy. But I think the horrific events of last week has impacted me great deal and I just want to spread love in whatever way I can. MS makes my world smaller in many ways so thank god for the Internet...
Specifically, have a client who is incredibly anxious. She frequently responds to her anxiety they becoming obnoxious, aggressive and angry. Her behavior is actually fueled by what we call cognitive distortions or wrong thinking. After a great deal of patient exploration I almost always find some idea that she has committed some horrible sin and that her parents and God will not forgive her. Sometimes she just thinks God will not forgive her and that she needs to punish herself by keeping her parents from loving her. She is angry at herself, but mostly she is terrified that she's going to Hell.
She knows, from frequent experience, that I and her mother will always love her and forgive her any behaviors, but she still wonders about God. I am mystified by the thoughts that anyone could think God is less capable of forgiveness than a mortal.
I am also flabbergasted by any church which proclaims to be Christian, could espouse such hatred in the guise of being the Word of God. It would be so easy to dismiss this or to make statements of hatred toward the haters. But what God really wants us to do and what is absolutely necessary to do in order to stop the cycle of hate and disconnection, is to choose a reflex of compassion and forgiveness.
Sometimes, it is much easier for me, and really I believe her most people, to forgive others than to have that same reflex of compassion and forgiveness for our own behaviors and shortcomings. MS requires a constant state of compassion toward my body and its inabilities. It requires a constant state of humility. It requires a constant state of accepting kindness of others.
I wish for all who are unable to recognize beauty of the world and the beauty of others, the ability to recognize their own inner turmoil. All hate starts with fear. All misguided deeds start with fear.
Fear of lack. Fear of disconnection. Fear of death. Fear of loss. Fear of humiliation. Heck, it could even be fear of being eaten by bears.
Every day I have to choose. I can choose to succumb to the fear of being invalid in the world. Or I can choose to see that I possess the ability to exist in joy and love. Actually, it is a choice that we all have to make whether we have a chronic illness or not!
I choose to forgive those who act out their anger and fear in whatever form it may take. I choose to forgive myself.
I hope that you are having a wonderful holiday and hope that you are able to share it with those whom you love. I hope that if you are having a conflict with someone you, you will decide that the relationship and love outweigh the conflict and that you reach out to them without fearing that they will think that you are weak for being the first one to give in.
I know this post is a little maudlin and sappy. But I think the horrific events of last week has impacted me great deal and I just want to spread love in whatever way I can. MS makes my world smaller in many ways so thank god for the Internet...
Friday, December 21, 2012
Trees
Sundays it's very hard to think of a topic
My life is pretty basic. I work out, hang out doing nothing, work on bead project, go office when I have clients. Not an exciting life.
But right now it is Christmastime so things are a little bit different. The Christmas furniture we ordered arrives today, thank goodness. Even the dog is getting tired of sitting on the floor! I haven't even seen it yet so I will be excited to know what it looks like. The Christmas tree is up and decorated nicely and we have scented candles burning so it smells like something is baking in here.
Christmas is one of those times that can be very bittersweet. You lose that Christmas feeling that children have when they're waiting for those surprise from Santa Claus. When your children are a little, you get to remember that feeling vicariously and watch the excitement in their eyes on Christmas morning. Christmas loses some of its panache for a 17-year-old senior in high school. There are some things that I am less able to do around Christmas. It is harder for me to participate in the decoration process, and I can't bake cookies as I would like!
But I'm pretty good at reminiscing! So today I thought it would share some of my favorite memories about Christmas trees
When we lived in Jefferson City, we got our Christmas trees from our friend's Christmas tree farm. So we always had a beautiful tree. But in addition to that one, my mom had one of those trees made all out of silver colored tinsel with one of those revolving: lights with all different colors. We kept that one in the formal living room, and I used to love to sit in there and watch it spin and change colors. Oh yeah it only had blue glass ball Christmas ornaments on it, and it looks sort of strange when it was red or yellow. I think those things are probably worth some money now because so many people have nostalgia for them!
Another favorite tree story I have is from when I first got married. We lived on the third floor of walk-up apartment in Chicago. We had some friends over for Thanksgiving dinner, and afterwards we went for a walk and passed by a Christmas tree lot. Our friends convinced us to get one and they helped us drag it up to the third floor. It was beautiful, but it's a long time from Thanksgiving to Christmas and by the time Christmas came the tree began to show signs of exposure to the dry air from the radiators. Every time we walked past it, we'd hear little needles falling on the hardwood floors. On Christmas day, we had plans to drive to Missouri to see my parents. Because the tree was looking rather forlorn, we took it down before we left. More and more needles hit the floor every time we removed an ornament. By the time we dragged the tree out to the back porch, it was a mere skeleton of its former self. It left a trail of needles from the living room to the back porch! We had to shovel those needles out and we swear that,to this day,there are probably needles trapped between the boards of hardwood!
A few years ago we gave up and got a fake tree, but we didn't really have anywhere to store it. It lived in our guest room for awhile and we put it up for about six years. Last year we finally decided that it was a little too sad to put up. So we are back to having a real tree.
That's enough memories for now.
Hope everyone is having a wonderful Christmastime
My life is pretty basic. I work out, hang out doing nothing, work on bead project, go office when I have clients. Not an exciting life.
But right now it is Christmastime so things are a little bit different. The Christmas furniture we ordered arrives today, thank goodness. Even the dog is getting tired of sitting on the floor! I haven't even seen it yet so I will be excited to know what it looks like. The Christmas tree is up and decorated nicely and we have scented candles burning so it smells like something is baking in here.
Christmas is one of those times that can be very bittersweet. You lose that Christmas feeling that children have when they're waiting for those surprise from Santa Claus. When your children are a little, you get to remember that feeling vicariously and watch the excitement in their eyes on Christmas morning. Christmas loses some of its panache for a 17-year-old senior in high school. There are some things that I am less able to do around Christmas. It is harder for me to participate in the decoration process, and I can't bake cookies as I would like!
But I'm pretty good at reminiscing! So today I thought it would share some of my favorite memories about Christmas trees
When we lived in Jefferson City, we got our Christmas trees from our friend's Christmas tree farm. So we always had a beautiful tree. But in addition to that one, my mom had one of those trees made all out of silver colored tinsel with one of those revolving: lights with all different colors. We kept that one in the formal living room, and I used to love to sit in there and watch it spin and change colors. Oh yeah it only had blue glass ball Christmas ornaments on it, and it looks sort of strange when it was red or yellow. I think those things are probably worth some money now because so many people have nostalgia for them!
Another favorite tree story I have is from when I first got married. We lived on the third floor of walk-up apartment in Chicago. We had some friends over for Thanksgiving dinner, and afterwards we went for a walk and passed by a Christmas tree lot. Our friends convinced us to get one and they helped us drag it up to the third floor. It was beautiful, but it's a long time from Thanksgiving to Christmas and by the time Christmas came the tree began to show signs of exposure to the dry air from the radiators. Every time we walked past it, we'd hear little needles falling on the hardwood floors. On Christmas day, we had plans to drive to Missouri to see my parents. Because the tree was looking rather forlorn, we took it down before we left. More and more needles hit the floor every time we removed an ornament. By the time we dragged the tree out to the back porch, it was a mere skeleton of its former self. It left a trail of needles from the living room to the back porch! We had to shovel those needles out and we swear that,to this day,there are probably needles trapped between the boards of hardwood!
A few years ago we gave up and got a fake tree, but we didn't really have anywhere to store it. It lived in our guest room for awhile and we put it up for about six years. Last year we finally decided that it was a little too sad to put up. So we are back to having a real tree.
That's enough memories for now.
Hope everyone is having a wonderful Christmastime
Thursday, December 20, 2012
Hello agan! I'm back.
I didn't post on Tuesday as I was on a train all day and yesterday I was busy just getting back into the groove of things.
The train was interesting again. I had to changeover in St. Louis and once again, the people were most accommodating and I got to take the tram ride. Wahoo! In Chicago, there was no one to help me off of the train. I had to ask a nice lady to help me get my suitcase off, and had to walk to the station on my own. Fortunately there was this beautiful kid standing at the gate to help me just like an angel. Oh yeah that would be my son!
A really interesting thing happened when I got home. My husband had surprised me with this beautiful new furniture! Oh yeah that's not quite true. I am getting new furniture, however, it hasn't arrived yet but my husband went ahead and threw out our old furniture anyway. So right now my living room looks like a real big empty! There is only one chair and I have claimed it. The furniture arrives on Friday, thank goodness!
Getting back into the swing of things after a vacation has its challenges for me. Unpacking a suit case, which should just take a few minutes is a drawnout affair for me. Usually you have to hang up clothes and put things back into drawers. I have to do one, rest a little, then do another thing, rest a little more, and do something else. Unpacking a suit case can be at least an hour long ordeal. Yesterday I wanted to get some stuff done. I made my list,(checked it twice), and then ended up getting exactly two things done. One of the things was to go to Walgreens to pick up one of my medications. That used up most of my leg power.
Back to complaining again!
After resting at my office, I was able to see five clients in a row! Fortunately I have two playrooms, because my final class client trashed one of them, and they didn't have time or the legs to clean it up! I had another Play Therapy clients at seven and I was happy to have a room that wasn't destroyed to see him in. Unfortunately, he left a pretty big mess in that one, too! Oh well, I guess I know what I'm doing before a client start arriving at 11 today!
It is good to be home despite the lack of furniture and the big mess at my office. I know this blog is a little boring, but if I really want to let you into my world, some days it's going to be a little boring!
I will try to think of a good topic for you for tomorrow. Until then I will watch the rain that is supposed to be snow and try to get into more of a Christmas mood. I don't know the song titled I'm dreaming of a rainy Christmas!
See you tomorrow
I didn't post on Tuesday as I was on a train all day and yesterday I was busy just getting back into the groove of things.
The train was interesting again. I had to changeover in St. Louis and once again, the people were most accommodating and I got to take the tram ride. Wahoo! In Chicago, there was no one to help me off of the train. I had to ask a nice lady to help me get my suitcase off, and had to walk to the station on my own. Fortunately there was this beautiful kid standing at the gate to help me just like an angel. Oh yeah that would be my son!
A really interesting thing happened when I got home. My husband had surprised me with this beautiful new furniture! Oh yeah that's not quite true. I am getting new furniture, however, it hasn't arrived yet but my husband went ahead and threw out our old furniture anyway. So right now my living room looks like a real big empty! There is only one chair and I have claimed it. The furniture arrives on Friday, thank goodness!
Getting back into the swing of things after a vacation has its challenges for me. Unpacking a suit case, which should just take a few minutes is a drawnout affair for me. Usually you have to hang up clothes and put things back into drawers. I have to do one, rest a little, then do another thing, rest a little more, and do something else. Unpacking a suit case can be at least an hour long ordeal. Yesterday I wanted to get some stuff done. I made my list,(checked it twice), and then ended up getting exactly two things done. One of the things was to go to Walgreens to pick up one of my medications. That used up most of my leg power.
Back to complaining again!
After resting at my office, I was able to see five clients in a row! Fortunately I have two playrooms, because my final class client trashed one of them, and they didn't have time or the legs to clean it up! I had another Play Therapy clients at seven and I was happy to have a room that wasn't destroyed to see him in. Unfortunately, he left a pretty big mess in that one, too! Oh well, I guess I know what I'm doing before a client start arriving at 11 today!
It is good to be home despite the lack of furniture and the big mess at my office. I know this blog is a little boring, but if I really want to let you into my world, some days it's going to be a little boring!
I will try to think of a good topic for you for tomorrow. Until then I will watch the rain that is supposed to be snow and try to get into more of a Christmas mood. I don't know the song titled I'm dreaming of a rainy Christmas!
See you tomorrow
Tuesday, December 18, 2012
Excuse me, but my politics are showing
I know that many people won' t use Facebook to get political for fear of alienating someone, but for the life of me, I cannot understand the reason why anyone,right or left, could possibly be against gun regulations.
What is so compelling about this piece of metal that has been engineered to project another piece of metal?
What makes me feel the most sad is how much I realize that we are so afraid of each other. This issue is creating an even deeper chasm of distrust.
I have expressed my views on Facebook, sorta daring people to give me an alternate view. As always, I am aware that I will not change the mind of someone from the "other side", and I hope the other side is aware that they will not change mine.
The only way for me to understand the pro- gun argument is to recognize how frightened they must be all the time. Every argument for guns is tinged with fear and an idea that the world is "us versus them". The problem is that there is no "them". Everyone is us.
So to anyone that is offended by my arguments, I want to apologize. I see the fear of death in you. I see the fear of lack. I see the fear of disconnection. I see the fear of the unknown and the distrust of the"other". I must understand that horrible feeling to understand the views that fuel the pro gun ideology. And most importantly, I must love everyone on every side of every argument. Pro gun views would be valid if we truly lived in a disconnect from each other. We have believed the cruel illusion of separation from each other far too long. The only way to counter the illusion is to fill the void of fear with love.
So what can I do or say to convince you that you are safe. You cannot be separate. You cannot ever not be loved. And you will never ensure that this remains true with any kind of weapon.
What is so compelling about this piece of metal that has been engineered to project another piece of metal?
What makes me feel the most sad is how much I realize that we are so afraid of each other. This issue is creating an even deeper chasm of distrust.
I have expressed my views on Facebook, sorta daring people to give me an alternate view. As always, I am aware that I will not change the mind of someone from the "other side", and I hope the other side is aware that they will not change mine.
The only way for me to understand the pro- gun argument is to recognize how frightened they must be all the time. Every argument for guns is tinged with fear and an idea that the world is "us versus them". The problem is that there is no "them". Everyone is us.
So to anyone that is offended by my arguments, I want to apologize. I see the fear of death in you. I see the fear of lack. I see the fear of disconnection. I see the fear of the unknown and the distrust of the"other". I must understand that horrible feeling to understand the views that fuel the pro gun ideology. And most importantly, I must love everyone on every side of every argument. Pro gun views would be valid if we truly lived in a disconnect from each other. We have believed the cruel illusion of separation from each other far too long. The only way to counter the illusion is to fill the void of fear with love.
So what can I do or say to convince you that you are safe. You cannot be separate. You cannot ever not be loved. And you will never ensure that this remains true with any kind of weapon.
Sunday, December 16, 2012
Fifty
Yesterday I hit the big 50!
It' s a little surreal to know I've inhabited the planet for half a century. Midlife crisis for me means I can no longer think that I have lots of time to get things done. I must get going on whatever bucket list I've got right now. Having MS has created an even greater urgency to do what I can do before my body thwarts my efforts further. But it has changed my goals, too. Instead of things like climbing a mountain or hiking the Appalachian trail, it has become things like making sure my kid gets an education or seeing or seeing Libera in concert.
But the important things on my list are to make sure that I leave this corporeal plane having some positive influence in the lives of the other souls I encounter. My bucket list is to make sure that everyone I meet knows that they are special and important just because they have the fire of life burning inside. Maybe if we all.believed that, no-one would be denied Mental Health services and no one would love their guns more than they love ensuring the safety of precious children.
Love everything and everyone, but most importantly, love yourself. There is NO ONE who does not count or who deserves to be thrown aside.
Repeat after me: I am amazing and so are you and we are even more amazing when we love each other!
It' s a little surreal to know I've inhabited the planet for half a century. Midlife crisis for me means I can no longer think that I have lots of time to get things done. I must get going on whatever bucket list I've got right now. Having MS has created an even greater urgency to do what I can do before my body thwarts my efforts further. But it has changed my goals, too. Instead of things like climbing a mountain or hiking the Appalachian trail, it has become things like making sure my kid gets an education or seeing or seeing Libera in concert.
But the important things on my list are to make sure that I leave this corporeal plane having some positive influence in the lives of the other souls I encounter. My bucket list is to make sure that everyone I meet knows that they are special and important just because they have the fire of life burning inside. Maybe if we all.believed that, no-one would be denied Mental Health services and no one would love their guns more than they love ensuring the safety of precious children.
Love everything and everyone, but most importantly, love yourself. There is NO ONE who does not count or who deserves to be thrown aside.
Repeat after me: I am amazing and so are you and we are even more amazing when we love each other!
Saturday, December 15, 2012
What's really important
I got to see my dear friend, Jere, yesterday.
It was so lovely to see him and talk about our shared past and catch up on what has happened since. I sincerely hope that we manage to have more of a shared future from now on, too.
Although my joy at seeing him was not sure subdued, it was colored by the devastating news from Connecticut. 20 New souls were torn from the planet. Someone was in such incredible pain and disconnection, that they were unable to see beauty in themselves or others. Neither the killer nor his victims will ever feel the joy of finding someone special to celebrate with in the joy of life. They will never experience the amazement of discovering how much more wonderful life is with each new experience. The killer was so damaged that he forgot the beauty that he possessed. When we only live from ego and feel as if there is no more to who we are, we lose our true humanity, and see other souls, especially those who are new, as painful reminders of our lack of connection.
I am grateful every day for the soul connections in my life. I am joyful every day to know that connection always persist and are always available. Disconnection is a cruel illusion.
Thank you, Jere, for sharing your soul with me. I love you and everyone who has been in my world.
MS is the smallest part of my life when I remember how much more of me is not contained in this body. While this container struggles to walk, the true me flies!
Friday, December 14, 2012
Videos
I can' t figure out how to edit/post videos!
I took some videos in my old house and in Central Dairy yesterday, but I gotta figure out how to put them on my blog page, so for now, I will just tell you about it. It's gotten a little less odd to be in JC than in the past.Been in the parsonage at least three times now, so it's not as surreal as before. When I was there last summer, I had used up all my legs and couldn't climb the stairs, so this time we had lunch first so I was able to climb the stairs, in my awkward manner. There way a little girl doing her Christmas shopping in my old bedroom. I told her that I used to live there and this was my old room. She said, "I knew this was a house, but I didn't know anyone ever lived here!". Surreal.
Denial is a useful concept and not just a river....never mind. Most pros Thu n k denial just means you' 're not accepting reality, but it is a lot more complicated than that. There are four levels of denial. The first is "I don't believe it,"'. The second is, "I know it's true, but it's not going to stay true.". The third is, "It's true,it will stay true, but my life won' t change in any way.". And lastly, " It's true, it's going to stay true, but I don't have any feelings about it.". I live quite nicely in the last stage most of the time! It's not a bad thing to stay the there, btw, because if we spent all of the time in our feelings we would not be able to function in the real world! So I toured my old house in my protective denial. I was able to reminisce without feeling cheated or bitter, and you know what I discovered? My sister's room was significantly bigger than mine! Now I'm bitter!
Eating ice cream at Central Dairy eased the pain a little!
Today my friend Jere is coming so I will tell you about that later.
Bye for now.
I took some videos in my old house and in Central Dairy yesterday, but I gotta figure out how to put them on my blog page, so for now, I will just tell you about it. It's gotten a little less odd to be in JC than in the past.Been in the parsonage at least three times now, so it's not as surreal as before. When I was there last summer, I had used up all my legs and couldn't climb the stairs, so this time we had lunch first so I was able to climb the stairs, in my awkward manner. There way a little girl doing her Christmas shopping in my old bedroom. I told her that I used to live there and this was my old room. She said, "I knew this was a house, but I didn't know anyone ever lived here!". Surreal.
Denial is a useful concept and not just a river....never mind. Most pros Thu n k denial just means you' 're not accepting reality, but it is a lot more complicated than that. There are four levels of denial. The first is "I don't believe it,"'. The second is, "I know it's true, but it's not going to stay true.". The third is, "It's true,it will stay true, but my life won' t change in any way.". And lastly, " It's true, it's going to stay true, but I don't have any feelings about it.". I live quite nicely in the last stage most of the time! It's not a bad thing to stay the there, btw, because if we spent all of the time in our feelings we would not be able to function in the real world! So I toured my old house in my protective denial. I was able to reminisce without feeling cheated or bitter, and you know what I discovered? My sister's room was significantly bigger than mine! Now I'm bitter!
Eating ice cream at Central Dairy eased the pain a little!
Today my friend Jere is coming so I will tell you about that later.
Bye for now.
Thursday, December 13, 2012
Jefferson City
Good morning.
I have figured out how to use my Kindle as a video camera, so today when we visit Jeff City, I Will be able to show you some of the adventure into my nostalgic past.
Yesterday we just hung around except for shopping at Wally World (Walmart is the dominating superstore in these here parts...). I don' t mind shopping there when I am here, cause the aisles are wide and they have scooters. I love that since I can actually shop longer than 15 minutes, but I am a little disconnected by the beeping noise they make when you put them in reverse. It calls attention to you and I feel like yelling, "Wide load coming through!". I definitely prefer carts to wheelchairs! I am in . control and people get out of your way!
As an aside, it is a different world down here! For beading, you use Fireline thread which is actually fishing line. At the Target up by me there is an aisle of fishing gear, but only one kind of line and a few poles. Here, there are three aisles of fishing gear! So I got 230 yards of the stuff! At a bead store, it's $10 for 50 yards, but I got 230 for $30! Go figure...
So I will post some videos for you later today.
I have figured out how to use my Kindle as a video camera, so today when we visit Jeff City, I Will be able to show you some of the adventure into my nostalgic past.
Yesterday we just hung around except for shopping at Wally World (Walmart is the dominating superstore in these here parts...). I don' t mind shopping there when I am here, cause the aisles are wide and they have scooters. I love that since I can actually shop longer than 15 minutes, but I am a little disconnected by the beeping noise they make when you put them in reverse. It calls attention to you and I feel like yelling, "Wide load coming through!". I definitely prefer carts to wheelchairs! I am in . control and people get out of your way!
As an aside, it is a different world down here! For beading, you use Fireline thread which is actually fishing line. At the Target up by me there is an aisle of fishing gear, but only one kind of line and a few poles. Here, there are three aisles of fishing gear! So I got 230 yards of the stuff! At a bead store, it's $10 for 50 yards, but I got 230 for $30! Go figure...
So I will post some videos for you later today.
Wednesday, December 12, 2012
Missouri
I made it to MO
I am trying to type on my Kindle. Slow going, so I will be short today. The train was fairly empty and quiet and I didn't have to scream for service. People were very solicitous toward me but not condescending. They gave me a little tram ride in St. Louis when I had to change trains. It was like being at the zoo, but with trains instead of animals, and no on told us to keep our hands and feet inside the ride at all times! The train is great, but that's all you do for the day.
It is a little odd to be here without the rest of my family. I'm sure it would be even more strange to be in my childhood home. Actually, I will be in my childhood home since my old house, the parsonage in Jefferson City is now a thrift store! Do you know how weird it is to see someone selling used video games out of your old bedroom?
I am looking forward to visiting old haunts, but I have to pace myself so I don' t lose my legs too soon. That's why we plan to visit Central Dairy (the best ice cream parlor in the world) as our resting ground!
I' 'll keep you posted!
I am trying to type on my Kindle. Slow going, so I will be short today. The train was fairly empty and quiet and I didn't have to scream for service. People were very solicitous toward me but not condescending. They gave me a little tram ride in St. Louis when I had to change trains. It was like being at the zoo, but with trains instead of animals, and no on told us to keep our hands and feet inside the ride at all times! The train is great, but that's all you do for the day.
It is a little odd to be here without the rest of my family. I'm sure it would be even more strange to be in my childhood home. Actually, I will be in my childhood home since my old house, the parsonage in Jefferson City is now a thrift store! Do you know how weird it is to see someone selling used video games out of your old bedroom?
I am looking forward to visiting old haunts, but I have to pace myself so I don' t lose my legs too soon. That's why we plan to visit Central Dairy (the best ice cream parlor in the world) as our resting ground!
I' 'll keep you posted!
Monday, December 10, 2012
Traveling
I may be taking a short break from blogging
because tomorrow I leave for a short vacation. Each is an actually a Christmas trip. I am going to my old hometown to see one of my friends who will also be visiting my old hometown. I'm so excited because haven't seen him since the 80s! I wasn't able to have a visit with another one of my best friends who I try to see when I am there.
So I'll be somewhere with no Dragon NaturallySpeaking on the computer! I will try to blog little bit just to keep you caught on what's happening.
Traveling is a good topic for the day because it is a much bigger issue for me than it is for other people. Even with the help I received at the airport, it doesn't account for things like standing in lines or getting bags in and out of places , and other stuff like that. This time, I am taking the train. In so many ways the train is much more convenient, but in some ways, more of a challenge. Amtrak is working very hard to accommodate people like me. The problem is, there is no skycap or someone else to help me get into the station itself. Parking in downtown Chicago is always difficult and even handicapped parking and does not really get you very much closer to the station itself. So my husband usually drops me off. The easiest place to get dropped off happens to be an entrance was no elevator to the main level. Just an escalator, which I passionately hate. Escalators freak me out. Getting on an up escalator is freaky enough, but standing at the top of a down escalator is a whole other level of freaked out. The last time I tried at Union Station, I attempted to put my bag on first and step on after it without killing myself. The problem is that I need something stable to hold onto in order to feel as if I am not going to fall down. Did you know that the rails on the escalator and never stop moving? So when I put my bag on, it moved on ahead way before me and then decided to topple itself down the stairs the rest of the way. Fortunately, there was no one on the escalator so it didn't knock anybody down. I made it down without falling, but it was a little mortifying. Now we have figured out that we can actually get a train in Glenview which is much closer with way easier parking. It leaves really early in the morning and then I have to transfer trains at Union Station. Fortunately once I am in the station itself, there will be people who can help me. I can hoist myself up onto the train, but I can't hoist my bags up onto a train. I usually pay a little bit extra to go first class-the difference is really minimal-and the seats are bigger and I get to go onto the train first.
The last time I took the train into Missouri, there was a service disruption on the train. They are building a high-speed train from Chicago to St. Louis! When it is done, it will only take an hour to get to St. Louis on the train! I think it's supposed to be done in 2014. However when they were working on it last summer I had to take a super bus! That was an adventure... there is no first class on the bus obviously, so the seating was uncomfortable at best. The super bus is a chartered bus, but really it is one step down from a regular chartered bus. It's a way for students to cheaply go back and forth from St. Louis to Chicago. So there weren't a lot of people who weren't students on this bus. I can no longer kid myself that I could possibly pass for a student... The bus also takes a lot longer than a train and the scenery is not pleasant. Even though Illinois is incredibly flat and boring, riding through on a train is much more enjoyable than driving on a bus on the highway!
Transferring on and off of the bus was a whole lot more difficult than transferring trains as well! Someone threw my bag onto the wrong bus. Everyone else was grabbing their bags off of the bus and putting on a new bus. No one noticed me or helped me at all. I finally stood and screamed, "I need help!" I guess that's the best way to get assistance!
So hopefully this trip will be a little more uneventful and uncomfortable.
The train station in St. Louis used to be called Amshack instead of Amtrak. For a major metropolitan city, it was pretty disgraceful and nonexistent! It had no real facilities or even a real building. Now it is a much nicer building with a tiny food court and an actual bathrooms. Their service for people like me is not fabulous, but if I stand and scream, "I need help!" It's usually pretty effective!
So wish me a safe trip and I'm so excited to see two of my old and dear friends. Oh yeah and my parents...
Talk to you soon and wish me luck on my trip!
So I'll be somewhere with no Dragon NaturallySpeaking on the computer! I will try to blog little bit just to keep you caught on what's happening.
Traveling is a good topic for the day because it is a much bigger issue for me than it is for other people. Even with the help I received at the airport, it doesn't account for things like standing in lines or getting bags in and out of places , and other stuff like that. This time, I am taking the train. In so many ways the train is much more convenient, but in some ways, more of a challenge. Amtrak is working very hard to accommodate people like me. The problem is, there is no skycap or someone else to help me get into the station itself. Parking in downtown Chicago is always difficult and even handicapped parking and does not really get you very much closer to the station itself. So my husband usually drops me off. The easiest place to get dropped off happens to be an entrance was no elevator to the main level. Just an escalator, which I passionately hate. Escalators freak me out. Getting on an up escalator is freaky enough, but standing at the top of a down escalator is a whole other level of freaked out. The last time I tried at Union Station, I attempted to put my bag on first and step on after it without killing myself. The problem is that I need something stable to hold onto in order to feel as if I am not going to fall down. Did you know that the rails on the escalator and never stop moving? So when I put my bag on, it moved on ahead way before me and then decided to topple itself down the stairs the rest of the way. Fortunately, there was no one on the escalator so it didn't knock anybody down. I made it down without falling, but it was a little mortifying. Now we have figured out that we can actually get a train in Glenview which is much closer with way easier parking. It leaves really early in the morning and then I have to transfer trains at Union Station. Fortunately once I am in the station itself, there will be people who can help me. I can hoist myself up onto the train, but I can't hoist my bags up onto a train. I usually pay a little bit extra to go first class-the difference is really minimal-and the seats are bigger and I get to go onto the train first.
The last time I took the train into Missouri, there was a service disruption on the train. They are building a high-speed train from Chicago to St. Louis! When it is done, it will only take an hour to get to St. Louis on the train! I think it's supposed to be done in 2014. However when they were working on it last summer I had to take a super bus! That was an adventure... there is no first class on the bus obviously, so the seating was uncomfortable at best. The super bus is a chartered bus, but really it is one step down from a regular chartered bus. It's a way for students to cheaply go back and forth from St. Louis to Chicago. So there weren't a lot of people who weren't students on this bus. I can no longer kid myself that I could possibly pass for a student... The bus also takes a lot longer than a train and the scenery is not pleasant. Even though Illinois is incredibly flat and boring, riding through on a train is much more enjoyable than driving on a bus on the highway!
Transferring on and off of the bus was a whole lot more difficult than transferring trains as well! Someone threw my bag onto the wrong bus. Everyone else was grabbing their bags off of the bus and putting on a new bus. No one noticed me or helped me at all. I finally stood and screamed, "I need help!" I guess that's the best way to get assistance!
So hopefully this trip will be a little more uneventful and uncomfortable.
The train station in St. Louis used to be called Amshack instead of Amtrak. For a major metropolitan city, it was pretty disgraceful and nonexistent! It had no real facilities or even a real building. Now it is a much nicer building with a tiny food court and an actual bathrooms. Their service for people like me is not fabulous, but if I stand and scream, "I need help!" It's usually pretty effective!
So wish me a safe trip and I'm so excited to see two of my old and dear friends. Oh yeah and my parents...
Talk to you soon and wish me luck on my trip!
Sunday, December 9, 2012
Purpose
What is the point of life? I am working with this very intriguing 23 year old kid right now. He is one of the more depressed people that I know, but since he doesn't have insurance he doesn't have any access to looking for someone who can give him some medication. Besides he wouldn't take it. He self-medicates with marijuana. Too bad he doesn't live in Washington state... But , he comes to therapy religiously every week. And he actually uses it. But he struggles with esoteric ideas regarding the meaning of life. We spend a lot of time exploring what it could be.
He's made me think of about the point of my own life.
I am a firm believer in paying attention to the universe and what it's telling me. I am also really good at ignoring any signals. Now, you can't tell me that this was just a coincidence. I had two separate accidents within a month of each other on the scene stretch of road going to work at my old job. Actually one was going and one was coming back. The first one was when a 17-year-old girl was trying to sneak through a gap in the cars and didn't watch the traffic and pulled out directly in front of me. I freaked out and pulled my car really hard to the right in order to avoid a head-on collision. I ended up almost hitting an apartment building! Flashbacks of hitting my house! I managed to stop in time and just knocked down a for rent sign. When the cop came and saw the way I walked, he kept saying "Are your sure you're okay?". I had to explain that I always walk this way.
The second time I was coming home from work on the scene stretch of road. This time a 17-year-old boy pulled out of his driveway and directly into my path. Again I pulled really hard away from him as much as possible, but he managed to hit my car right on the chassis between two doors. That accident was a little more freaky! After the first accident I had driven up onto the lawn of the apartment building so I was out of the way of the oncoming traffic. In the second one, the kid, who was driving a huge SUV, pushed my little Honda Fit right into the middle of the road. Plus I got turned around so I was facing oncoming traffic. I think that I have a guardian angel because a car came to block the path of the oncoming traffic. Yeah yeah, it was probably just somebody who was coming anyway and saw the accident. But it felt like a guardian angel! In the first accident, the car was messed up, but it wasn't as visible as with the Fit. When the SUV knocked into the Fit, it blew out all of the safety class on the passenger side. I know why they call it safety glass because I found little pieces of glass in my bra that night! It was everywhere. It looked like someone had thrown a huge bucket of ice all over the seat of my car. But it wasn't hurt, the airbags didn't go off, and except for a CD in the CD player, I rescued everything from out of the car. And I didn't have a passenger because they probably would have been injured.
Now I drive a Nissan Cube. It may be ugly, but it gets great safety ratings!
Maybe this was just a coincidence, 17-year-olds are bad drivers, or it a dangerous stretch of road. But it feels to me like the universe was trying to tell me that I needed to get out of that job. Since I didn't listen, the universe arranged for me to get laid off!
I knew that I was not happy in that job. I liked the kids, and I liked my staff , of course, but it was getting harder and harder for me to work those hours. I could have given up my part-time private practice, but I really didn't want to. And thank goodness I didn't since community mental health all over was pretty much decimated financially. The cynical part of me thinks I was laid off because I was on the insurance and made the premiums go up, but there is someone else who has Parkinson's disease who works there and he hasn't been laid off, so that's probably not it.
Recently I received another message from the universe. I had a business partner who basically screwed me over. The funny thing is, she pursued me to join my private practice. I told her fine but she would have to be in charge of all the business aspects because I wasn't in a good at that. She agreed and then pretty much took over everything. I am a pretty laid back person and she's a pretty pushy person.
She chose which bank we would use, what furniture we would buy, how we would set up my playroom... you name it. I had to put my foot down on two things. One was the use of an accountant. She wanted to use her accountant who was telling her that there was no way she would get any better deal with anyone else. He was kind of a creep, too. He used to say sexist things to her and yell at her and tell her not to question him. I finally told her we had to go meet with the accountant that my husband and I have used who is a great guy. Her accountant was charging us $200 a quarter. The accountant that I recommended, charged us about $80 a quarter.
Another thing I put my foot down about was location choice. At the time that she joined me, we were in an office building that was horribly neglected. I had moved their from a building that has recently been sold. I had one little office in the basement of the building and was paying a tiny little amount for it. The new company wanted to have me sign right a 13 year lease or something ridiculous like that. So I had moved into an individual office in a suite with another therapist. That guy turned out to be kind of a jerk, and the building was decrepit and really poorly regulated temperature-wise. I still have a picture on my phone that I took of a thermometer I have that reads 110°! Remember, I am not supposed to get too hot. My partner had wanted to rent space on a different floor of that building and get a loan to do a build-out. We actually went so far as to meet with the contractor. But she wanted to do it without getting a permit! The owner of the building that was okay with that! I refused to do that. Plus her plans, would have given her about 85% of suite for what she does and I would not have my own office. I've had my own office since I graduated from grad school years ago! Since the space hadn't been built yet I figured I would have those battles later. As it was, we didn't get the loan from her bank. Message from the universe. Duh!
So we decided to look for a new office. This is where I did put my foot down. I have always had a private practice in the suburb where I live. She wanted me to think about moving to the suburb where she lives.
I had given in on a lot of things to her, but this was not negotiable.
After a while, it became quite evident that I was working way more than I was being compensated for. I asked if we could please have an accountant review QuickBooks and help her with it. She was very controlling about the money and QuickBooks. She finally agreed with the idea that he would just train us on the books. When he came, he needed to be able to access our account in order to reconcile the numbers. She became very defense is a cagey about providing that information. Later. the accountant told me that they were trained to recognize when someone was hiding something and that being so defensive meant that she was probably hiding something.
To this day I think that what she was hiding was that she was completely incompetent in terms of managing the books. She is very smart and prides herself on being good at a lot of things. But I also think, that I was paying the lion's share of the expenses. She always maintained that we were making about we were bringing in about the same amount of money, but the accountant's assessment of what he could see, was that I was making much more.
This was a huge lesson for me. I was way too trusting and didn't look out for my own interests. I should have insisted from the very start that we both have equal access to the finances and the books. She would give me a statement once a month, and I was totally trusting that she was telling me accurate and complete information. Now, I don't think she meant to rip me off. I think she legitimately wanted to build a private practice together. But her goals were to hire a bunch of other therapists and not have to do the work ourselves. I just wanted to do good work.
The upshot of the situation is that she decided that we shouldn't be in practice together because she was uncomfortable managing my money. Once again, I took the path of least resistance. She had been the one to pursue becoming incorporated, and she had been the one to work on getting contracts with several of the insurance companies. This isn't really true, because I already had contracts with some of them, but she was the one who talked to them and got us on to panels as a group practice. I was so hurt and angry that I just wanted to be done with her so I let her keep the corporation and the name. The name we were using was when I thought of years and years ag. I remember telling my supervisor at a job I had about 20 years ago that I wanted to have a place called the Playful Healing Center. But now she owns the name and a website with that name. I had a painting done by a friend a long time ago as well to be my logo. I had a business card design was using and she changed it anyway. But it has the logo on it. I understand that she has cards to use up. And I understand she can't get to changing the paperwork with the logo is on it. We are currently sharing the office space and I am being very tolerant. But there will come a time where I will tell her she has to stop using the logo, and though I am not a litigious person, it may end up coming to that.
I know that this has very little to do with MS, but I really needed to talk about it. This whole debacle feels like one of the reasons I am struggling with midlife crisis and questioning why I am doing what I'm doing.
I think she is completely clueless how much she hurt me and how angry I am. Someday, I am going to reclaim the name of my practice and she will have to find something new to call her self.
But for now, I am continuing the best that I can.
So what is the point of life? MS definitely plays a role in teaching me something as did the challenges of my business partner.
Here is my point in my: challenges are always going to come. You can choose to allow them to keep you from connecting to others or you can choose to continue to believe that people are basically good. You can become angry and bitter and reject someone out right if they hurt you. Or you can live in grace accepting people and situations as they are. I choose to believe that we are all part of the same and that when someone treats you badly their pain is worse than your pain because they are living in unawareness and darkness because they choose to not recognize how special and important connections are.
I started by talking about the 23-year-old depressed kid I am and working with. I shared with him that my joy is being able to be connected to him through sharing of our experiences.
The universe is giving me the messages to slow down, and to be more attuned my world and recognize what is important. Love Each Other Love Each Other Love Each Other.
I am a firm believer in paying attention to the universe and what it's telling me. I am also really good at ignoring any signals. Now, you can't tell me that this was just a coincidence. I had two separate accidents within a month of each other on the scene stretch of road going to work at my old job. Actually one was going and one was coming back. The first one was when a 17-year-old girl was trying to sneak through a gap in the cars and didn't watch the traffic and pulled out directly in front of me. I freaked out and pulled my car really hard to the right in order to avoid a head-on collision. I ended up almost hitting an apartment building! Flashbacks of hitting my house! I managed to stop in time and just knocked down a for rent sign. When the cop came and saw the way I walked, he kept saying "Are your sure you're okay?". I had to explain that I always walk this way.
The second time I was coming home from work on the scene stretch of road. This time a 17-year-old boy pulled out of his driveway and directly into my path. Again I pulled really hard away from him as much as possible, but he managed to hit my car right on the chassis between two doors. That accident was a little more freaky! After the first accident I had driven up onto the lawn of the apartment building so I was out of the way of the oncoming traffic. In the second one, the kid, who was driving a huge SUV, pushed my little Honda Fit right into the middle of the road. Plus I got turned around so I was facing oncoming traffic. I think that I have a guardian angel because a car came to block the path of the oncoming traffic. Yeah yeah, it was probably just somebody who was coming anyway and saw the accident. But it felt like a guardian angel! In the first accident, the car was messed up, but it wasn't as visible as with the Fit. When the SUV knocked into the Fit, it blew out all of the safety class on the passenger side. I know why they call it safety glass because I found little pieces of glass in my bra that night! It was everywhere. It looked like someone had thrown a huge bucket of ice all over the seat of my car. But it wasn't hurt, the airbags didn't go off, and except for a CD in the CD player, I rescued everything from out of the car. And I didn't have a passenger because they probably would have been injured.
Now I drive a Nissan Cube. It may be ugly, but it gets great safety ratings!
Maybe this was just a coincidence, 17-year-olds are bad drivers, or it a dangerous stretch of road. But it feels to me like the universe was trying to tell me that I needed to get out of that job. Since I didn't listen, the universe arranged for me to get laid off!
I knew that I was not happy in that job. I liked the kids, and I liked my staff , of course, but it was getting harder and harder for me to work those hours. I could have given up my part-time private practice, but I really didn't want to. And thank goodness I didn't since community mental health all over was pretty much decimated financially. The cynical part of me thinks I was laid off because I was on the insurance and made the premiums go up, but there is someone else who has Parkinson's disease who works there and he hasn't been laid off, so that's probably not it.
Recently I received another message from the universe. I had a business partner who basically screwed me over. The funny thing is, she pursued me to join my private practice. I told her fine but she would have to be in charge of all the business aspects because I wasn't in a good at that. She agreed and then pretty much took over everything. I am a pretty laid back person and she's a pretty pushy person.
She chose which bank we would use, what furniture we would buy, how we would set up my playroom... you name it. I had to put my foot down on two things. One was the use of an accountant. She wanted to use her accountant who was telling her that there was no way she would get any better deal with anyone else. He was kind of a creep, too. He used to say sexist things to her and yell at her and tell her not to question him. I finally told her we had to go meet with the accountant that my husband and I have used who is a great guy. Her accountant was charging us $200 a quarter. The accountant that I recommended, charged us about $80 a quarter.
Another thing I put my foot down about was location choice. At the time that she joined me, we were in an office building that was horribly neglected. I had moved their from a building that has recently been sold. I had one little office in the basement of the building and was paying a tiny little amount for it. The new company wanted to have me sign right a 13 year lease or something ridiculous like that. So I had moved into an individual office in a suite with another therapist. That guy turned out to be kind of a jerk, and the building was decrepit and really poorly regulated temperature-wise. I still have a picture on my phone that I took of a thermometer I have that reads 110°! Remember, I am not supposed to get too hot. My partner had wanted to rent space on a different floor of that building and get a loan to do a build-out. We actually went so far as to meet with the contractor. But she wanted to do it without getting a permit! The owner of the building that was okay with that! I refused to do that. Plus her plans, would have given her about 85% of suite for what she does and I would not have my own office. I've had my own office since I graduated from grad school years ago! Since the space hadn't been built yet I figured I would have those battles later. As it was, we didn't get the loan from her bank. Message from the universe. Duh!
So we decided to look for a new office. This is where I did put my foot down. I have always had a private practice in the suburb where I live. She wanted me to think about moving to the suburb where she lives.
I had given in on a lot of things to her, but this was not negotiable.
After a while, it became quite evident that I was working way more than I was being compensated for. I asked if we could please have an accountant review QuickBooks and help her with it. She was very controlling about the money and QuickBooks. She finally agreed with the idea that he would just train us on the books. When he came, he needed to be able to access our account in order to reconcile the numbers. She became very defense is a cagey about providing that information. Later. the accountant told me that they were trained to recognize when someone was hiding something and that being so defensive meant that she was probably hiding something.
To this day I think that what she was hiding was that she was completely incompetent in terms of managing the books. She is very smart and prides herself on being good at a lot of things. But I also think, that I was paying the lion's share of the expenses. She always maintained that we were making about we were bringing in about the same amount of money, but the accountant's assessment of what he could see, was that I was making much more.
This was a huge lesson for me. I was way too trusting and didn't look out for my own interests. I should have insisted from the very start that we both have equal access to the finances and the books. She would give me a statement once a month, and I was totally trusting that she was telling me accurate and complete information. Now, I don't think she meant to rip me off. I think she legitimately wanted to build a private practice together. But her goals were to hire a bunch of other therapists and not have to do the work ourselves. I just wanted to do good work.
The upshot of the situation is that she decided that we shouldn't be in practice together because she was uncomfortable managing my money. Once again, I took the path of least resistance. She had been the one to pursue becoming incorporated, and she had been the one to work on getting contracts with several of the insurance companies. This isn't really true, because I already had contracts with some of them, but she was the one who talked to them and got us on to panels as a group practice. I was so hurt and angry that I just wanted to be done with her so I let her keep the corporation and the name. The name we were using was when I thought of years and years ag. I remember telling my supervisor at a job I had about 20 years ago that I wanted to have a place called the Playful Healing Center. But now she owns the name and a website with that name. I had a painting done by a friend a long time ago as well to be my logo. I had a business card design was using and she changed it anyway. But it has the logo on it. I understand that she has cards to use up. And I understand she can't get to changing the paperwork with the logo is on it. We are currently sharing the office space and I am being very tolerant. But there will come a time where I will tell her she has to stop using the logo, and though I am not a litigious person, it may end up coming to that.
I know that this has very little to do with MS, but I really needed to talk about it. This whole debacle feels like one of the reasons I am struggling with midlife crisis and questioning why I am doing what I'm doing.
I think she is completely clueless how much she hurt me and how angry I am. Someday, I am going to reclaim the name of my practice and she will have to find something new to call her self.
But for now, I am continuing the best that I can.
So what is the point of life? MS definitely plays a role in teaching me something as did the challenges of my business partner.
Here is my point in my: challenges are always going to come. You can choose to allow them to keep you from connecting to others or you can choose to continue to believe that people are basically good. You can become angry and bitter and reject someone out right if they hurt you. Or you can live in grace accepting people and situations as they are. I choose to believe that we are all part of the same and that when someone treats you badly their pain is worse than your pain because they are living in unawareness and darkness because they choose to not recognize how special and important connections are.
I started by talking about the 23-year-old depressed kid I am and working with. I shared with him that my joy is being able to be connected to him through sharing of our experiences.
The universe is giving me the messages to slow down, and to be more attuned my world and recognize what is important. Love Each Other Love Each Other Love Each Other.
Saturday, December 8, 2012
Play Therapy
After yesterdays pity- party, I thought I'd talk a little bit about something different
Have I mentioned yet that I'm a Play Therapist? I've had jobs where I have a title, but it's not who I am. But, being a therapist is something that sort of integral to your soul. Play therapy is the form of therapy that is used with children. A play therapist uses toys and playing as the therapy. A lot of people say they do play therapy when what they mean is that they have toys in their office and use those toys to engage the child clients in a conversation with words. Play therapist realize that children are concrete creatures. Words are abstract but toys are concrete. When children play, they are communicating much more with their choice of toys, how they play, and how they engage the therapist then they ever do with their words. I can never remember the exact statistic, but something like 85% of what we say and communication has nothing to do with words. Take the sentence, "I didn't say you were stupid. " Now say that sentence emphasizing a different word every time. I didn't say you were stupid. I didn't say you were stupid. I didn't say you were stupid. I didn't say you were stupid. I didn't say you were stupid. And finally , I didn't say you were stupid. Same words, different meaning every time.
My MS has had an impact my ability as a therapist. Sometimes this is a negative impact, like when I fall asleep in sessions! But many times it has been useful and helpful.
Sometimes, how clients respond to the obvious signs of my MS, is almost diagnostic! If a child just blurts out, "You walk funny!", I tend to think attention deficit hyperactivity disorder. Some kids are more subtle. Once a kid said to me, "My sister says you walk with a limp". This was a kid who clearly didn't want to take responsibility for hurting my feelings. I had another kid who made fun of my walking. Here was a kid with oppositional defiant disorder! It's a client completely ignores my condition or is oblivious to it, this tells me that they are so wrapped up in their own world and problems that they are slightly incapable of connecting with me.
I have also used my MS to establish empathy. Knowing that I have my own challenges, makes people feel that I have a greater understanding of what they aren't going through. I worked with a kid who was on medication for depression. He was very angry about having to deal with his depression and said something like, "You don't understand what it's like! You don't have to take a pill every morning!"
I looked at him and said, "You don't have to give yourself a shot in the butt every other day!". I wasn't trying to be unsympathetic. But this was a kid who was a chronic victim and he needed to have a reality check about the difficulty of this situation. When working with children whose parents have died, I recognize the need to reassure the clients that I don't have any intentions of dying anytime soon. A lot of kids think that since I walk with a cane I must be very very old!
Sometimes the MS can make it difficult for me to do some of the things that the kids want to do. Recently I had a child say, "You might want to get down on the floor for this.". I just say, "I am for staying in my chair.". Most kids are okay with that as long as I can lean way down to be on their level. Sometimes I have kids who really need to trash the play room. I know this needs to happen, but I just dread the cleanup process. (Trashing the room in play therapy talk, is sort of like an adult client having an emotional breakdown or being very angry.) It is also a way for children's test the limits and see if I really do accept them unconditionally. This is why I do not have glitter and my playroom! The sand tray is bad enough!
So part of me wants to go on disability in order to alleviate the stress of worrying about insurance coverage and paying the mortgage but I really can't see myself giving up doing play therapy with children or not being a therapist anymore. First of all, you really don't get all that much money on disability! Secondly, and most importantly, being "disabled" and an invalid is not really a role I would like to ascribe to!
No one grows up and says, "I'd love to be on disability when I'm an adult"!
Being a play therapist is an integral part of my makeup. Being on disability is not.
Have I mentioned yet that I'm a Play Therapist? I've had jobs where I have a title, but it's not who I am. But, being a therapist is something that sort of integral to your soul. Play therapy is the form of therapy that is used with children. A play therapist uses toys and playing as the therapy. A lot of people say they do play therapy when what they mean is that they have toys in their office and use those toys to engage the child clients in a conversation with words. Play therapist realize that children are concrete creatures. Words are abstract but toys are concrete. When children play, they are communicating much more with their choice of toys, how they play, and how they engage the therapist then they ever do with their words. I can never remember the exact statistic, but something like 85% of what we say and communication has nothing to do with words. Take the sentence, "I didn't say you were stupid. " Now say that sentence emphasizing a different word every time. I didn't say you were stupid. I didn't say you were stupid. I didn't say you were stupid. I didn't say you were stupid. I didn't say you were stupid. And finally , I didn't say you were stupid. Same words, different meaning every time.
My MS has had an impact my ability as a therapist. Sometimes this is a negative impact, like when I fall asleep in sessions! But many times it has been useful and helpful.
Sometimes, how clients respond to the obvious signs of my MS, is almost diagnostic! If a child just blurts out, "You walk funny!", I tend to think attention deficit hyperactivity disorder. Some kids are more subtle. Once a kid said to me, "My sister says you walk with a limp". This was a kid who clearly didn't want to take responsibility for hurting my feelings. I had another kid who made fun of my walking. Here was a kid with oppositional defiant disorder! It's a client completely ignores my condition or is oblivious to it, this tells me that they are so wrapped up in their own world and problems that they are slightly incapable of connecting with me.
I have also used my MS to establish empathy. Knowing that I have my own challenges, makes people feel that I have a greater understanding of what they aren't going through. I worked with a kid who was on medication for depression. He was very angry about having to deal with his depression and said something like, "You don't understand what it's like! You don't have to take a pill every morning!"
I looked at him and said, "You don't have to give yourself a shot in the butt every other day!". I wasn't trying to be unsympathetic. But this was a kid who was a chronic victim and he needed to have a reality check about the difficulty of this situation. When working with children whose parents have died, I recognize the need to reassure the clients that I don't have any intentions of dying anytime soon. A lot of kids think that since I walk with a cane I must be very very old!
Sometimes the MS can make it difficult for me to do some of the things that the kids want to do. Recently I had a child say, "You might want to get down on the floor for this.". I just say, "I am for staying in my chair.". Most kids are okay with that as long as I can lean way down to be on their level. Sometimes I have kids who really need to trash the play room. I know this needs to happen, but I just dread the cleanup process. (Trashing the room in play therapy talk, is sort of like an adult client having an emotional breakdown or being very angry.) It is also a way for children's test the limits and see if I really do accept them unconditionally. This is why I do not have glitter and my playroom! The sand tray is bad enough!
So part of me wants to go on disability in order to alleviate the stress of worrying about insurance coverage and paying the mortgage but I really can't see myself giving up doing play therapy with children or not being a therapist anymore. First of all, you really don't get all that much money on disability! Secondly, and most importantly, being "disabled" and an invalid is not really a role I would like to ascribe to!
No one grows up and says, "I'd love to be on disability when I'm an adult"!
Being a play therapist is an integral part of my makeup. Being on disability is not.
Friday, December 7, 2012
The rest of my day
I'm ready to tell you about the rest of my very boring day
Admittedly, Friday is a very slow day for me. I try not to see clients, and I tend not to do any paperwork either. That is partially because I really want a day off, and partially because, by the end of the week, I'm just out of energy. So I did go to my office at about 10:10, in order to get ready to see my 11 o'clock client. There is a ramp to get into my building but it was added after the building was built and it is very steep, so I'd rather just hoist myself up the very tall step. I can't walk and do something else at the same time. So I have to stop inside the door to find my key. Once I'm in my office I'm generally okay. After a Play Therapy session, there is sometimes a great big mess and depending on how much energy I have, I try to immediately throw things back on shelves. But if I'm too tired, I'll just leave it for another day. I know there is a mess in the play right now, but I was seeing adults today, so I left it for tomorrow. After my session, I really wanted to try out this new burger joint called American Wild Burger, but there was a pretty long line and I knew I couldn't stand there the whole time. Fortunately, my husband hadn't eaten anything when I got home (he currently works at home repairing brass instruments in the garage), so we got to try out American Wild Burger after all. It was pretty yummy by the way.
A couple of years ago my mom gave me a whole bunch of beads. She used to make bracelets but got tired of it and was going to throw them away. So I took them to use with the kids. But they are really cool and I really like, and I ended up making my own jewelry. I think my sister and my mom are tired of getting beaded bracelets and rings! However, I'm still making things but I needed some string and some twin beads for project. There is a really cool bead store around the corner from me. So I don't have to go very far I when I need something, thank goodness.
The store is packed full of things. And there are always a lot of people there. It's those kinds of places that are sort of treacherous for me. I always run into things, drop stuff, whack people with my bag... stuff like that. I spend most of the time apologizing and being fearful that I'm going to break something. Fortunately once again people are always willing to help me so I got what I needed and came home. Now, I know that this is a very limited amount things to do in one day. But everything is effort and I felt wiped out, so I took a nap.
Tomorrow I have 5 client spread out between nine and three o'clock. Four of them are play therapy clients and one is a young man struggling with depression. I don't want to quit being a therapist. But I do want to have to quit struggling to get paid from the insurance companys. I spent so much of my energy on the business aspect of things, so I have a lot less energy to actually work with clients. I had a partnership for awhile and that helped a little on the business end, but that didn't work out. But that's a whole other story.
I think I sound a little like a whiney today. But sometimes I just want to have some blatant self pity. But don't you give me any pity, because that would piss me off.
Admittedly, Friday is a very slow day for me. I try not to see clients, and I tend not to do any paperwork either. That is partially because I really want a day off, and partially because, by the end of the week, I'm just out of energy. So I did go to my office at about 10:10, in order to get ready to see my 11 o'clock client. There is a ramp to get into my building but it was added after the building was built and it is very steep, so I'd rather just hoist myself up the very tall step. I can't walk and do something else at the same time. So I have to stop inside the door to find my key. Once I'm in my office I'm generally okay. After a Play Therapy session, there is sometimes a great big mess and depending on how much energy I have, I try to immediately throw things back on shelves. But if I'm too tired, I'll just leave it for another day. I know there is a mess in the play right now, but I was seeing adults today, so I left it for tomorrow. After my session, I really wanted to try out this new burger joint called American Wild Burger, but there was a pretty long line and I knew I couldn't stand there the whole time. Fortunately, my husband hadn't eaten anything when I got home (he currently works at home repairing brass instruments in the garage), so we got to try out American Wild Burger after all. It was pretty yummy by the way.
A couple of years ago my mom gave me a whole bunch of beads. She used to make bracelets but got tired of it and was going to throw them away. So I took them to use with the kids. But they are really cool and I really like, and I ended up making my own jewelry. I think my sister and my mom are tired of getting beaded bracelets and rings! However, I'm still making things but I needed some string and some twin beads for project. There is a really cool bead store around the corner from me. So I don't have to go very far I when I need something, thank goodness.
The store is packed full of things. And there are always a lot of people there. It's those kinds of places that are sort of treacherous for me. I always run into things, drop stuff, whack people with my bag... stuff like that. I spend most of the time apologizing and being fearful that I'm going to break something. Fortunately once again people are always willing to help me so I got what I needed and came home. Now, I know that this is a very limited amount things to do in one day. But everything is effort and I felt wiped out, so I took a nap.
Tomorrow I have 5 client spread out between nine and three o'clock. Four of them are play therapy clients and one is a young man struggling with depression. I don't want to quit being a therapist. But I do want to have to quit struggling to get paid from the insurance companys. I spent so much of my energy on the business aspect of things, so I have a lot less energy to actually work with clients. I had a partnership for awhile and that helped a little on the business end, but that didn't work out. But that's a whole other story.
I think I sound a little like a whiney today. But sometimes I just want to have some blatant self pity. But don't you give me any pity, because that would piss me off.
Whole picture
I'm not sure that my last post really gave a picture of what it's like to struggle with MS
so I thought it would kind of walk you through the day moment by moment.
I woke up at four. I made myself lay there for a little bit and probably slept fitfully on and off. I finally got up at about 5:15. Since I can just sit at my computer, that part of my morning is not really all that difficult. It's just early.
Things are still not difficult until I go to work out. Today I just did the elliptical machine. There are a couple of kinds at my gym. One has you gliding back and forth like you're skiing. Your feet are flat. I can't do that one because I don't have enough control over my legs to keep my feet on the ski. Another one I do sometimes it's more of a stepper. If you really get it going you can do very long strides. But you can also just kind of go up and down. I know that one is really good for my quads which are very unresponsive most of the time. I can only do that one for about a half a mile. And one I do is called the Precor and your feet are at a slightly elevated angle. I can keep my feet on , and go about a mile. I don't stop because I am winded, or my heart rate is too high. I stop because my legs actually quit responding. I like to do the elliptical, though, because this is a movement I can't do in real life. It's the closest thing that I can get to actually running. I have something called drop foot which means that I don't walk heel to toe. I can do that rolling motion that you do when you walk normallyt. Walking with drop foot means that I trip easily, can't go very fast, and get worn out very easily. When you see people with canes the assumption is that they can walk okay as long as they have the support. But for people with MS, it's really because after a while I really can't walk.
So after lurching my way to my car, and getting home, I sit for a while before my shower. Once I am in the shower, I have two grab bars that I never quit holding on to, because when my eyes are closed I have no sense of balance at all. So when I wash my hair I have to do so with one hand so I can hold on to the bar with the other. After the shower getting dressed as an adventure. I have to lift my leg up with my arms in order to be able to get into my pants because I can't lift it high enough otherwise. Due to the frequent tripping and the inability to wear shoes that aren't slightly orthopedic, I gave up wearing dresses and skirts a long time ago.
I have to dry my hair sitting down, because if I don't I am using up my energy and won't be able to finish the rest of my morning routine. I lurched my way out to my computer desk holding onto walls and chairs in order to not fall down, and I do my makeup sitting at my desk because I also can't stand up to do that.
That's about where I'm at today. I have a client at 11 o'clock and so until then I will probably do a beading project and finished with sudoku which is really hard on Fridays. I will write some more later in order to give you a picture of what it's like during the rest of the day.
so I thought it would kind of walk you through the day moment by moment.
I woke up at four. I made myself lay there for a little bit and probably slept fitfully on and off. I finally got up at about 5:15. Since I can just sit at my computer, that part of my morning is not really all that difficult. It's just early.
Things are still not difficult until I go to work out. Today I just did the elliptical machine. There are a couple of kinds at my gym. One has you gliding back and forth like you're skiing. Your feet are flat. I can't do that one because I don't have enough control over my legs to keep my feet on the ski. Another one I do sometimes it's more of a stepper. If you really get it going you can do very long strides. But you can also just kind of go up and down. I know that one is really good for my quads which are very unresponsive most of the time. I can only do that one for about a half a mile. And one I do is called the Precor and your feet are at a slightly elevated angle. I can keep my feet on , and go about a mile. I don't stop because I am winded, or my heart rate is too high. I stop because my legs actually quit responding. I like to do the elliptical, though, because this is a movement I can't do in real life. It's the closest thing that I can get to actually running. I have something called drop foot which means that I don't walk heel to toe. I can do that rolling motion that you do when you walk normallyt. Walking with drop foot means that I trip easily, can't go very fast, and get worn out very easily. When you see people with canes the assumption is that they can walk okay as long as they have the support. But for people with MS, it's really because after a while I really can't walk.
So after lurching my way to my car, and getting home, I sit for a while before my shower. Once I am in the shower, I have two grab bars that I never quit holding on to, because when my eyes are closed I have no sense of balance at all. So when I wash my hair I have to do so with one hand so I can hold on to the bar with the other. After the shower getting dressed as an adventure. I have to lift my leg up with my arms in order to be able to get into my pants because I can't lift it high enough otherwise. Due to the frequent tripping and the inability to wear shoes that aren't slightly orthopedic, I gave up wearing dresses and skirts a long time ago.
I have to dry my hair sitting down, because if I don't I am using up my energy and won't be able to finish the rest of my morning routine. I lurched my way out to my computer desk holding onto walls and chairs in order to not fall down, and I do my makeup sitting at my desk because I also can't stand up to do that.
That's about where I'm at today. I have a client at 11 o'clock and so until then I will probably do a beading project and finished with sudoku which is really hard on Fridays. I will write some more later in order to give you a picture of what it's like during the rest of the day.
A day in the life
Today I will walk you through the day in my life.
Even if you understand something intellectually, it is really hard to actually know what something is like unless you live it. You know how you think you know how your going to feel about something that you know is coming up? Like: this is what I'd do if I won the lottery... or I'll be so excited if I get that job, I know what to expect after the baby come... those kinds of things. But then when the event does happen, the feelings you have are still unexpected and the choices you make are totally different than what you thought.
That is what it's like to have MS.
So here's what my days like so you can just get a little taste. Oh yeah, and please don't say things like "I could never do what you do". You do what you have to do in any situation.
So let's start at night and sleeping. My sleep usually starts while I am sitting on the couch and watching television. Even if I really want to see the show, I'll start to fall asleep at about 9:30. Sometimes I blink and my eyes just never reopen! So when I start to realize that I'm falling asleep I don't fight it anymore, and just get ready for bed. I can fall asleep anywhere and at the drop of a hat. It's staying asleep that is the challenge. So no matter how much I limit liquids before bed, I almost always have to get up about one o'clock to pee. I can come back to bed and fall asleep again immediately, but around 2:30 I wake up because my neck is stiff or my back hurts. I change position and fluff up my pillow, but after that I just toss and turn a lot. I literally do not remember the last time I slept through the night. I sleep better in the winter than in a summer because the heat really impacts on me and even with the air-conditioning is on, I get too hot if it is not fridgidly cold in this house. Often times I end up sleeping in a big leather recliner chair we have because it's cool to the touch. So after tossing and turning for a couple of hours, I finally get up. I spend the early morning time blogging and working Sudoku puzzle. At about 6:30 and finally start to get myself ready for the day. I have to have coffee to take my 8000 pill (really it's only four pills it's a couple of Metamucil tablet and a vitamin. But it feels like 8000!)
A dent into my work-out clothes because I try to go to the gym at least five days a week. On Saturday I start to see clients at nine o'clock so don't really have time.
I have been an exerciser on and off my whole life. Since I am not at all athletic, and never have been, doing aerobics or calisthenics on my own has always been my only way of getting exercise. My workout routine varies according to how I feel and where I am parking. If the handicapped parking in front of the gym is taken then I know that I'm not going to to do the elliptical machine because I can barely walk afterI'm done with that. I actually started at Curves with all the other old ladies, but it started to have very limited results after the first year. So I upgraded to Cardinal fitness. Actually it was cheaper and open more frequently and had more choices for working out. And it's closer! I'm sort of sad that I didn't just start there! I have never been lacking in strength with the MS. It's not like muscular dystrophy or something that makes your muscles atrophy. It's about the connections in your brain not being made. So my muscles are plenty strong. I can do the weight machines because I don't have to stand up for most of them and I don't have to worry about my form being correct because it's a machine you sit on and go... so I try to work my abs almost every day and then I vary which machines I choose. I've actually gone from about 25 pounds on a curl machine to 55 pounds and can actually see a muscle now. I didn't used to be able to do the elliptical. I didn't have the balance. But now I can do at least a mile before my legs just give out.
When I'm done working out, I just set a trajectory for my car and pray that no one runs me down!
When I get home, I have to sit for about 20 minutes before taking a shower because I can't stand up long enough otherwise. I really love a hot shower, but I have to make sure I don't get too hot the whole day will be a crapshoot. After that my life is pretty boring because they don't have a full-time job. I won't bore you with the details of just sitting around doing nothing. I will tell you about what it's like to try to do stuff outside of my house.
There are times when I would like to go shopping or I need to go run errands. My life is all about choices at these times. Do I choose to go to the library instead of going to Walgreens to pick up a medication? If I did the elliptical machine this morning will my legs last long enough for me to be able to go to that big sale at Talbot's? Actually, the big sale always takes precidenc!
I gotta stop blogging for the day since my son is up and the dog is annoying me. So I will tell you more about day to day life tomorrow.
Even if you understand something intellectually, it is really hard to actually know what something is like unless you live it. You know how you think you know how your going to feel about something that you know is coming up? Like: this is what I'd do if I won the lottery... or I'll be so excited if I get that job, I know what to expect after the baby come... those kinds of things. But then when the event does happen, the feelings you have are still unexpected and the choices you make are totally different than what you thought.
That is what it's like to have MS.
So here's what my days like so you can just get a little taste. Oh yeah, and please don't say things like "I could never do what you do". You do what you have to do in any situation.
So let's start at night and sleeping. My sleep usually starts while I am sitting on the couch and watching television. Even if I really want to see the show, I'll start to fall asleep at about 9:30. Sometimes I blink and my eyes just never reopen! So when I start to realize that I'm falling asleep I don't fight it anymore, and just get ready for bed. I can fall asleep anywhere and at the drop of a hat. It's staying asleep that is the challenge. So no matter how much I limit liquids before bed, I almost always have to get up about one o'clock to pee. I can come back to bed and fall asleep again immediately, but around 2:30 I wake up because my neck is stiff or my back hurts. I change position and fluff up my pillow, but after that I just toss and turn a lot. I literally do not remember the last time I slept through the night. I sleep better in the winter than in a summer because the heat really impacts on me and even with the air-conditioning is on, I get too hot if it is not fridgidly cold in this house. Often times I end up sleeping in a big leather recliner chair we have because it's cool to the touch. So after tossing and turning for a couple of hours, I finally get up. I spend the early morning time blogging and working Sudoku puzzle. At about 6:30 and finally start to get myself ready for the day. I have to have coffee to take my 8000 pill (really it's only four pills it's a couple of Metamucil tablet and a vitamin. But it feels like 8000!)
A dent into my work-out clothes because I try to go to the gym at least five days a week. On Saturday I start to see clients at nine o'clock so don't really have time.
I have been an exerciser on and off my whole life. Since I am not at all athletic, and never have been, doing aerobics or calisthenics on my own has always been my only way of getting exercise. My workout routine varies according to how I feel and where I am parking. If the handicapped parking in front of the gym is taken then I know that I'm not going to to do the elliptical machine because I can barely walk afterI'm done with that. I actually started at Curves with all the other old ladies, but it started to have very limited results after the first year. So I upgraded to Cardinal fitness. Actually it was cheaper and open more frequently and had more choices for working out. And it's closer! I'm sort of sad that I didn't just start there! I have never been lacking in strength with the MS. It's not like muscular dystrophy or something that makes your muscles atrophy. It's about the connections in your brain not being made. So my muscles are plenty strong. I can do the weight machines because I don't have to stand up for most of them and I don't have to worry about my form being correct because it's a machine you sit on and go... so I try to work my abs almost every day and then I vary which machines I choose. I've actually gone from about 25 pounds on a curl machine to 55 pounds and can actually see a muscle now. I didn't used to be able to do the elliptical. I didn't have the balance. But now I can do at least a mile before my legs just give out.
When I'm done working out, I just set a trajectory for my car and pray that no one runs me down!
When I get home, I have to sit for about 20 minutes before taking a shower because I can't stand up long enough otherwise. I really love a hot shower, but I have to make sure I don't get too hot the whole day will be a crapshoot. After that my life is pretty boring because they don't have a full-time job. I won't bore you with the details of just sitting around doing nothing. I will tell you about what it's like to try to do stuff outside of my house.
There are times when I would like to go shopping or I need to go run errands. My life is all about choices at these times. Do I choose to go to the library instead of going to Walgreens to pick up a medication? If I did the elliptical machine this morning will my legs last long enough for me to be able to go to that big sale at Talbot's? Actually, the big sale always takes precidenc!
I gotta stop blogging for the day since my son is up and the dog is annoying me. So I will tell you more about day to day life tomorrow.
Thursday, December 6, 2012
brains
Brains are amazing things. In the world of psychology, looking into how brains work is becoming more and more important. Understanding the impact of brain function and the role it plays, has become another layer in assessment and therapeutic treatments. Having MS and attempting to understand the mechanics of the disease has also allowed me to become a little better versed in overall brain function.
When you become a little bit educated about something, you begin to realize how very little you actually know. Brains are incredibly complicated things. But they are also amazing. What I know about the brain in comparison to what there IS to know about the brain would fit into a thimble. The very most educated brain scientist would know would probably fit into a mason jar in comparison to what there is to know about the brain.
Remember the human genome project a few years ago? The one where they were trying to figure out what all of the different DNA building blocks of the human were? And they said we've got it figured out. Well, they left off about 90% of what actually was there. Basically what they said was the 10% that they figured out was important and the other 90% wasn't.
Now, I believes that men are amazing. You know, "What a piece of work is man. How noble in reason. How infinite in faculty's...", but I think that it is arrogant of us to think that we have anything figured out, really.
The one thing that we can know, is that brains are wired for connection to other people. Infants are wired to be cute so that they will be appealing and people will like to take care of them. They are also wired to believe that somehow bears or tigers will come and eat them up if they don't have a connection with someone. That's why attachment is so important, and why attachment disorders occur in infants who are neglected. I had an argument with a colleague once regarding whether someone who had been neglected as a child could be just as screwed up as someone who is beat up as a child. When you look at brain functioning, a neglected brain is atrophied and underdeveloped. I'm not saying that abuse is not incredibly damaging, but normal functioning becomes impossible when your brain is damaged.
So brains are massive and amazing and fragile. It's all over the news right now how football players are so negatively impacted by all the head trauma. Protect your children's brains. Tell coaches to quit allowing children to head the ball in soccer and quit rewarding the most violent athletes in football! We need to have more ping-pong team's out there and reward that!
All of this rambling about the brain, leads me to my next silver lining and the most important one. That is, I have the opportunity to allow people to help me. We are all so proud and independent in this country and while I think that is a good thing, I think we have gotten way too far away from recognizing how important every other person is in the world. And we have forgotten how important it is for us to give to each other. You know that statement about it is better to give than to receive? Well in some ways it is better to give for your brain. When we freely give of ourselves, we are creating more and more of the connection needed for our survival. It is no accident that connection is one of the crucial C's that I mentioned before. Whenever I need help, although sometimes it hurts my pride, I see it is a way for me to connect with someone else and provide them with the opportunity to connect with me.
It is so important for people to get to know and understand other people who don't look like them! I was fortunate to be able to work for an agency where I was a serious minority. Not only were the clients mostly African-American , but most of the staff were African-American. I had to prove every day that I wanted to to get to know my colleagues and to understand their American experience, which was so different from my own. I thought it was funny that they had some preconceived notions about my life as well. They all figured I was rich and that my daddy put me through school and provided me with my car my home education... now I love my daddy, but rich he ain't!
Once I got to know everyone and they get to know me, the differences disappeared. My clients were foster children and their families. One of my African American child clients touched my hair. Most of my African-American kids were from the inner-city of Chicago. While Chicago is incredibly diverse, it is also incredibly segregated. Many of my child clients had never been out of Chicago, and their understanding of white people was what they learned from the television. Many of them had never been so close to a white person. When the child touched my hair she recoiled a little and said, "OOO! You're hair is hard!". I said Yeah , white girls have to use a lot of hairspray sometimes. She looked at me and said, "you are not that white". Now I practically glow in the dark I am so white. But what she was really saying was that she did not see the differences between us.
That was before I had MS. And I didn't stand out from the rest of the people in this relatively white suburb. But now I walk funny and use a cane and it sets me apart from other people. I am hoping that when people help me they will recognize that people who look different are not so different after all. MS is giving me an even greater insight into what it's like to be a minority in this country. And it truly is a silver lining because it has been an experience outside of the norm and I think my brain has developed because of it.
When you become a little bit educated about something, you begin to realize how very little you actually know. Brains are incredibly complicated things. But they are also amazing. What I know about the brain in comparison to what there IS to know about the brain would fit into a thimble. The very most educated brain scientist would know would probably fit into a mason jar in comparison to what there is to know about the brain.
Remember the human genome project a few years ago? The one where they were trying to figure out what all of the different DNA building blocks of the human were? And they said we've got it figured out. Well, they left off about 90% of what actually was there. Basically what they said was the 10% that they figured out was important and the other 90% wasn't.
Now, I believes that men are amazing. You know, "What a piece of work is man. How noble in reason. How infinite in faculty's...", but I think that it is arrogant of us to think that we have anything figured out, really.
The one thing that we can know, is that brains are wired for connection to other people. Infants are wired to be cute so that they will be appealing and people will like to take care of them. They are also wired to believe that somehow bears or tigers will come and eat them up if they don't have a connection with someone. That's why attachment is so important, and why attachment disorders occur in infants who are neglected. I had an argument with a colleague once regarding whether someone who had been neglected as a child could be just as screwed up as someone who is beat up as a child. When you look at brain functioning, a neglected brain is atrophied and underdeveloped. I'm not saying that abuse is not incredibly damaging, but normal functioning becomes impossible when your brain is damaged.
So brains are massive and amazing and fragile. It's all over the news right now how football players are so negatively impacted by all the head trauma. Protect your children's brains. Tell coaches to quit allowing children to head the ball in soccer and quit rewarding the most violent athletes in football! We need to have more ping-pong team's out there and reward that!
All of this rambling about the brain, leads me to my next silver lining and the most important one. That is, I have the opportunity to allow people to help me. We are all so proud and independent in this country and while I think that is a good thing, I think we have gotten way too far away from recognizing how important every other person is in the world. And we have forgotten how important it is for us to give to each other. You know that statement about it is better to give than to receive? Well in some ways it is better to give for your brain. When we freely give of ourselves, we are creating more and more of the connection needed for our survival. It is no accident that connection is one of the crucial C's that I mentioned before. Whenever I need help, although sometimes it hurts my pride, I see it is a way for me to connect with someone else and provide them with the opportunity to connect with me.
It is so important for people to get to know and understand other people who don't look like them! I was fortunate to be able to work for an agency where I was a serious minority. Not only were the clients mostly African-American , but most of the staff were African-American. I had to prove every day that I wanted to to get to know my colleagues and to understand their American experience, which was so different from my own. I thought it was funny that they had some preconceived notions about my life as well. They all figured I was rich and that my daddy put me through school and provided me with my car my home education... now I love my daddy, but rich he ain't!
Once I got to know everyone and they get to know me, the differences disappeared. My clients were foster children and their families. One of my African American child clients touched my hair. Most of my African-American kids were from the inner-city of Chicago. While Chicago is incredibly diverse, it is also incredibly segregated. Many of my child clients had never been out of Chicago, and their understanding of white people was what they learned from the television. Many of them had never been so close to a white person. When the child touched my hair she recoiled a little and said, "OOO! You're hair is hard!". I said Yeah , white girls have to use a lot of hairspray sometimes. She looked at me and said, "you are not that white". Now I practically glow in the dark I am so white. But what she was really saying was that she did not see the differences between us.
That was before I had MS. And I didn't stand out from the rest of the people in this relatively white suburb. But now I walk funny and use a cane and it sets me apart from other people. I am hoping that when people help me they will recognize that people who look different are not so different after all. MS is giving me an even greater insight into what it's like to be a minority in this country. And it truly is a silver lining because it has been an experience outside of the norm and I think my brain has developed because of it.
Wednesday, December 5, 2012
Silver Lining
For every crappy thing that happens there is usually a silver lining
I always keep in my mind that I can find some positives in the nastiness that is an MS. so here is a partial list of things that are included in my silver lining.
We have a cleaning lady comes every other week. This is something that is not a luxury item for me. I am honestly unable to do things like vacuum the entire house or scrub out the bathtub. So while I believe that everyone deserves to have a cleaning service if they want it, I can rationalize it as a necessary expense. Now if I could just make myself declutter, my house would actually look fairly decent!
When I travel by airplane, I don't have to walk all the way to my terminal. I don't know you've ever been to O'Hare airport, but it is pretty big. If my terminal is at the opposite end of the airport, I am looking at having to crawl the last half of the trip. So when I fly, I request a wheelchair. And then I am pushed through the terminal usually by an over-eager teenager. I don't have to stand in line in order to pass through security,either When Eli was little, they let him go through a special security checkpoint, too, so he didn't have to wait in those long lines. Usually the person who is pushing me is very good at dodging and weaving through the crowds. It is like some twisted carnival ride, called ram-a-mole or something. It is a little scary, but still better than having to walk to my gate!
For this next one, if you are a man or your sensibilities are easily offended don't read any further. Being on heavy duty medication does lots of strange things to your body. One time I got a perm and it didn't take. I thought it was the fault of the hairdresser, but then someone told me that all ofthe medications were probably responsible and that my hair would not accept chemicals anymore. I think that's a little weird, but I no longer try to make my hair curly.
The other thing that medication has done is thrown me into menopause.
I stopped having periods when I was about 37. I knew I wasn't pregnant because I knew what that felt like I just wasn't having periods. When I went to the doctor she ran some blood tests and said I was postmenopausal. Now if I was a very young woman with any possibility of having more children, this would have been fairly upsetting. But as it was I did a little joyful dance \that I no longer had to do that particular thing. It's expensive. It's messy. It's painful. And for me it served no purpose. I was not sad to see it go.
Of course, one of the more positive things has been the parking. I very rarely have to search for a good spot. Except for the time at the library that I talked about earlier, I don't think anyone begrudges me the handicapped spaces. I sometimes worry that people see me and think I should not be in a handicapped space. I am assuming that they think that I am too young to need that space. But when they see me walk they realize why I need it. But probably I need to remember the 16-36-66 rule.
That is: at age 16 you worry about what everyone thinks about you. At 36 you don't care what other people think about you. And at 66 he realized no one was ever thinking about you anyway. It is most likely that no one even gives a crap about why I am parking in the handicapped parking place.
I will be back tomorrow with more silver lining items.
I always keep in my mind that I can find some positives in the nastiness that is an MS. so here is a partial list of things that are included in my silver lining.
We have a cleaning lady comes every other week. This is something that is not a luxury item for me. I am honestly unable to do things like vacuum the entire house or scrub out the bathtub. So while I believe that everyone deserves to have a cleaning service if they want it, I can rationalize it as a necessary expense. Now if I could just make myself declutter, my house would actually look fairly decent!
When I travel by airplane, I don't have to walk all the way to my terminal. I don't know you've ever been to O'Hare airport, but it is pretty big. If my terminal is at the opposite end of the airport, I am looking at having to crawl the last half of the trip. So when I fly, I request a wheelchair. And then I am pushed through the terminal usually by an over-eager teenager. I don't have to stand in line in order to pass through security,either When Eli was little, they let him go through a special security checkpoint, too, so he didn't have to wait in those long lines. Usually the person who is pushing me is very good at dodging and weaving through the crowds. It is like some twisted carnival ride, called ram-a-mole or something. It is a little scary, but still better than having to walk to my gate!
For this next one, if you are a man or your sensibilities are easily offended don't read any further. Being on heavy duty medication does lots of strange things to your body. One time I got a perm and it didn't take. I thought it was the fault of the hairdresser, but then someone told me that all ofthe medications were probably responsible and that my hair would not accept chemicals anymore. I think that's a little weird, but I no longer try to make my hair curly.
The other thing that medication has done is thrown me into menopause.
I stopped having periods when I was about 37. I knew I wasn't pregnant because I knew what that felt like I just wasn't having periods. When I went to the doctor she ran some blood tests and said I was postmenopausal. Now if I was a very young woman with any possibility of having more children, this would have been fairly upsetting. But as it was I did a little joyful dance \that I no longer had to do that particular thing. It's expensive. It's messy. It's painful. And for me it served no purpose. I was not sad to see it go.
Of course, one of the more positive things has been the parking. I very rarely have to search for a good spot. Except for the time at the library that I talked about earlier, I don't think anyone begrudges me the handicapped spaces. I sometimes worry that people see me and think I should not be in a handicapped space. I am assuming that they think that I am too young to need that space. But when they see me walk they realize why I need it. But probably I need to remember the 16-36-66 rule.
That is: at age 16 you worry about what everyone thinks about you. At 36 you don't care what other people think about you. And at 66 he realized no one was ever thinking about you anyway. It is most likely that no one even gives a crap about why I am parking in the handicapped parking place.
I will be back tomorrow with more silver lining items.
Tuesday, December 4, 2012
Helping
People are very willing to help
Research shows that people are wired to want to be connected to each other. We need one another for survival. And most people actually feel very good about being helpful. I always appreciate when someone wants to help me. Very simple things like opening a door or picking things up when I dropped them are actually very invaluable to me. Anything that can keep me from having to use up the limited energy I have to work, with means I can go just a tad longer before I have to sit and regain my ability to move!
Here are some things you should know when you're helping.
When I am leaving the gym, please make sure I am not leaning on the door to help me stand up before you think that yanking it open farther will be helpful to me. I can't really speak for other people with handicaps, but for me sometimes if I am already pushing against a door, and I don't realize that someone is going to try to help me by pushing it for me, I will fall! When people say, " Can I get that for you?", it gives me an opportunity to regain my balance before the door stops being something I can't use for stability!
There are times where I could use some assistance across the street or to walk to my car. I appreciate when people offer to lend me an arm to help me walk. But sometimes people want to grab onto me and hold me up. This is very unhelpful not only because it does not help me to balance, but because it makes me feel little infantile! If you are helping handicapped person to walk somewhere with them arm in arm, just hold you arm arm very still and let the other person hold on to you as if you are a cane. Also, try to go a little slower, but don't slow way down. I will keep pace with you if you are stable enough. When you slow down, I slow down. You will just keep getting slower and slower until we are at a standstill.
Another thing is when I fall, I definitely appreciate help! But please don't just extend a hand and think that I can grab on and pull myself up! If you do, then expect me to put my full body weight on your extended arm because my legs don't have the strength to push me up. I am using my arm strength to get my feet out from underneath me. You would be better off, to get on your hands and knees and pretend you are a bench or chair so I can lean on you. Since this is usually not very practical, give me both of your hands and brace yourself! You are going to get all the weight of my body plus the force that I am going to exert on your arms. This is not a small amount of weight! Actually what would be most helpful, is for you to pick up my stuff, and help you get somewhere where I can lean on something. If there is nothing around, give me a lot of space because I can get up on my own if there is enough room. It's not pretty, but I can do it. Some people get really insulted that I won't just grabbed their arm and pull myself up. Believe me, it's not because I am a germaphobe or don't appreciate you. It's just that I would like to see us both be on our feet and if I try to use your arm, I will pull you down!
It is always a good idea to ask people if you can help them. I know that I will let you know if I could use some help. Sometimes it is not obvious what kind of help I want, but if you ask me I will say "you know, I really could use some help to..." even if it seems obvious what I want or need, it may be something else entirely that would be more useful. Of course, sometimes I just want to do it myself because I am so damn stubborn. Sometimes when people feel like you're helping them too much you might be taking away a little of their dignity.
If you are pushing someone in a wheelchair, make sure that you are aware of where they want to go and what they want to do. My mom and sister and I do a girls weekend getaway once a year. I try to rent or borrow a wheelchair for the trip so that we can do stuff and I don't have to walk everywhere. Both my mother and my sister are really good wheelchair pushers. But one time, we were at a flea market and my sister got distracted by something on one of the tables. She let go of the chair to look at something and didn't realize that I was still moving. I didn't realize that she had let go! I noticed we were going toward a ditch and wondered aloud why she was going in that direction! I started going a little faster and I realize I'm in a freefall! Fortunately I wasn't going too fast to stop myself and was able to wheel myself back up to where she was. The lesson is, please pay attention to the person in the chair! It's easy to just think about pushing the chair and not about the person you're pushing. But I have things I want to see and do also. I will let you do what you want to do, but please asking if there is somewhere or something that I'd like to do as well.
So don't quit trying to help. It helps me and it helps us both to feel connected to one another. After all we all are connected at a cellular level! But that's another topic !
I will Talk to you later.
Research shows that people are wired to want to be connected to each other. We need one another for survival. And most people actually feel very good about being helpful. I always appreciate when someone wants to help me. Very simple things like opening a door or picking things up when I dropped them are actually very invaluable to me. Anything that can keep me from having to use up the limited energy I have to work, with means I can go just a tad longer before I have to sit and regain my ability to move!
Here are some things you should know when you're helping.
When I am leaving the gym, please make sure I am not leaning on the door to help me stand up before you think that yanking it open farther will be helpful to me. I can't really speak for other people with handicaps, but for me sometimes if I am already pushing against a door, and I don't realize that someone is going to try to help me by pushing it for me, I will fall! When people say, " Can I get that for you?", it gives me an opportunity to regain my balance before the door stops being something I can't use for stability!
There are times where I could use some assistance across the street or to walk to my car. I appreciate when people offer to lend me an arm to help me walk. But sometimes people want to grab onto me and hold me up. This is very unhelpful not only because it does not help me to balance, but because it makes me feel little infantile! If you are helping handicapped person to walk somewhere with them arm in arm, just hold you arm arm very still and let the other person hold on to you as if you are a cane. Also, try to go a little slower, but don't slow way down. I will keep pace with you if you are stable enough. When you slow down, I slow down. You will just keep getting slower and slower until we are at a standstill.
Another thing is when I fall, I definitely appreciate help! But please don't just extend a hand and think that I can grab on and pull myself up! If you do, then expect me to put my full body weight on your extended arm because my legs don't have the strength to push me up. I am using my arm strength to get my feet out from underneath me. You would be better off, to get on your hands and knees and pretend you are a bench or chair so I can lean on you. Since this is usually not very practical, give me both of your hands and brace yourself! You are going to get all the weight of my body plus the force that I am going to exert on your arms. This is not a small amount of weight! Actually what would be most helpful, is for you to pick up my stuff, and help you get somewhere where I can lean on something. If there is nothing around, give me a lot of space because I can get up on my own if there is enough room. It's not pretty, but I can do it. Some people get really insulted that I won't just grabbed their arm and pull myself up. Believe me, it's not because I am a germaphobe or don't appreciate you. It's just that I would like to see us both be on our feet and if I try to use your arm, I will pull you down!
It is always a good idea to ask people if you can help them. I know that I will let you know if I could use some help. Sometimes it is not obvious what kind of help I want, but if you ask me I will say "you know, I really could use some help to..." even if it seems obvious what I want or need, it may be something else entirely that would be more useful. Of course, sometimes I just want to do it myself because I am so damn stubborn. Sometimes when people feel like you're helping them too much you might be taking away a little of their dignity.
If you are pushing someone in a wheelchair, make sure that you are aware of where they want to go and what they want to do. My mom and sister and I do a girls weekend getaway once a year. I try to rent or borrow a wheelchair for the trip so that we can do stuff and I don't have to walk everywhere. Both my mother and my sister are really good wheelchair pushers. But one time, we were at a flea market and my sister got distracted by something on one of the tables. She let go of the chair to look at something and didn't realize that I was still moving. I didn't realize that she had let go! I noticed we were going toward a ditch and wondered aloud why she was going in that direction! I started going a little faster and I realize I'm in a freefall! Fortunately I wasn't going too fast to stop myself and was able to wheel myself back up to where she was. The lesson is, please pay attention to the person in the chair! It's easy to just think about pushing the chair and not about the person you're pushing. But I have things I want to see and do also. I will let you do what you want to do, but please asking if there is somewhere or something that I'd like to do as well.
So don't quit trying to help. It helps me and it helps us both to feel connected to one another. After all we all are connected at a cellular level! But that's another topic !
I will Talk to you later.
Monday, December 3, 2012
Lucky
I actually think I'm a lucky person. I think with MS, it would be very easy to become bitter. But there are so many ways that I am so fortunate. I am fortunate that I was able to have my son before I got sick. It would've been nearly impossible to have a baby and care for a baby after my diagnosis. But, by the time I was diagnosed, Eli was already a year old. I really enjoyed him as an infant and toddler and was able to do lots of things with him including carrying him in a baby sling and going for marathon walks with him in the stroller. I think we wore that stroller out walking around the neighborhood!
I am also very fortunate, that we bought the house we did. We got this little ranch house before the big real estate bubble happened (which is fortunate in and of itself). We actually looked at a couple of two-story homes, and put a bid in on at least one. As it is, this house is actually pretty handicapped accessible. No stairs since it is a ranch. No basement so all of the utilities are upstairs. Not having a basement really freaked me out at first. I'm from Missouri and everyone has a basement there. I mean where do we go if there is a tornado? However, here in Des Plaines, the basement is a huge hazard because we live in a flood zone. I don't know how any times the basement would have been an underwater if we had one. So we are fortunate that we don't have to worry about a sump pump or things getting ruined due to flooding. Let's hear it for a house on a slab.
I am also fortunate that I had very good insurance when I got my diagnosis. I am fortunate that Bill Clinton signed into law that someone who is covered during a diagnosis can switch their coverage if they get a new job. I didn't have to worry about having a pre-existing condition when I got a new job. When I got laid off from my job it was very scary because I wasn't sure about my options. But another very lucky thing in that Illinois has a public option. Illinois has a high risk pool insurance. I was fortunate that HIPPA was another law and that I was able to stay on the insurance until the HIPPA ran out and that there was actually a government subsidy so that I wasn't paying $1500 a month.
Every day I realize how fortunate I am to have a supportive family. I work with so many people who struggle to find support in life. It is so easy to forget how important it is to have a support system and a caring family.
So while all the things that MS does to me could make me feel that I got the lousiest deal in the world, I am absolutely fortunate in so many ways.
My mom once sent me an e-mail about a donkey. The story in the e-mail was about a donkey who fell into a well. The farmer who owned the donkey decided it would be easier to just bury him in the well then it would be to try to get him out. So he started to shovel dirt into the well. After every shoveled full of dirt, the donkey would shake it off his back and step on it. In doing so he was able to smash the dirt down and step up closer to the edge of the well. Eventually he got to the top and walked out. The moral of the story is that if you have adversity you can allow it to bury you, or you could allow its to become a way for you to reach the top again. However, the story doesn't end there. The story ends with the donkey slapping the crap out of the farmer for being so rude.
Sometimes I just need to feel like I am slapping the crap out of the MS!
I am also very fortunate, that we bought the house we did. We got this little ranch house before the big real estate bubble happened (which is fortunate in and of itself). We actually looked at a couple of two-story homes, and put a bid in on at least one. As it is, this house is actually pretty handicapped accessible. No stairs since it is a ranch. No basement so all of the utilities are upstairs. Not having a basement really freaked me out at first. I'm from Missouri and everyone has a basement there. I mean where do we go if there is a tornado? However, here in Des Plaines, the basement is a huge hazard because we live in a flood zone. I don't know how any times the basement would have been an underwater if we had one. So we are fortunate that we don't have to worry about a sump pump or things getting ruined due to flooding. Let's hear it for a house on a slab.
I am also fortunate that I had very good insurance when I got my diagnosis. I am fortunate that Bill Clinton signed into law that someone who is covered during a diagnosis can switch their coverage if they get a new job. I didn't have to worry about having a pre-existing condition when I got a new job. When I got laid off from my job it was very scary because I wasn't sure about my options. But another very lucky thing in that Illinois has a public option. Illinois has a high risk pool insurance. I was fortunate that HIPPA was another law and that I was able to stay on the insurance until the HIPPA ran out and that there was actually a government subsidy so that I wasn't paying $1500 a month.
Every day I realize how fortunate I am to have a supportive family. I work with so many people who struggle to find support in life. It is so easy to forget how important it is to have a support system and a caring family.
So while all the things that MS does to me could make me feel that I got the lousiest deal in the world, I am absolutely fortunate in so many ways.
My mom once sent me an e-mail about a donkey. The story in the e-mail was about a donkey who fell into a well. The farmer who owned the donkey decided it would be easier to just bury him in the well then it would be to try to get him out. So he started to shovel dirt into the well. After every shoveled full of dirt, the donkey would shake it off his back and step on it. In doing so he was able to smash the dirt down and step up closer to the edge of the well. Eventually he got to the top and walked out. The moral of the story is that if you have adversity you can allow it to bury you, or you could allow its to become a way for you to reach the top again. However, the story doesn't end there. The story ends with the donkey slapping the crap out of the farmer for being so rude.
Sometimes I just need to feel like I am slapping the crap out of the MS!
Sunday, December 2, 2012
Doctors
So many doctors so little time having multiple sclerosis means having multiple doctors as well. I didn't even have a GP when I started to have my symptoms. Of course I had an OB/G YN during my pregnancy, but I could hardly return to them for deafness in my ear! I usually just went to a walk-in clinic -- I called them a doc-in-the-box -- if I had something like a sore throat. Now I have a neurologist, a dermatologist, a GP, a gynecologist, an oncologist, an ophthalmologist and I've even been to a urologist! It is so scary that I am on a first name basis with their office staff. I'm one of those folks who doesn't have to check in. I just waved at the office staff and they say he will be with you in a minute. And then we chitchat on my way out.
I have met other people who have MS who simply see their GP. I love my GP. She's wonderful and very smart. But I frequently educate her regarding the MS medications. I think that a neurologist is crucial for proper treatment for MS.
My first neurologist was Dr. Kovaleski. Once he realized that I was of moderate intelligence, I think he actually enjoyed having me as a patient. He would give me the usual MS once over; check my reflexes, watch me walk, ask me about new symptoms; And then he would start to talk to me about his own issues! He would say, "you know I'm sort of worried about my daughter...". Some days I thought I should charge him! He had five daughters and one of them was my physical therapist. I told her about his digressions with me. She laughed and said it means he really likes you!
Dr. Kovaleski eventually semi-retired to Galena where he is now a sleep specialist. My clinic must be the neurology group of weird names, because my choices for a new neurologist were either Dr. Misra or Dr. Katznelson. I picked Dr. Katznelson because he was available on Fridays which might seem a little arbitrary but sometimes choices are made for convenience! Dr. Kovaleski was a tall Catholic men and came across a little like an absent-minded Professor. Dr. Katznelson is a short Jewish man who is very intellectual and likes to use big words. Once I told him I get extra tired after a meal and he said I had postprandial fatigue... but my favorite Katznelson story is not about his words. Once I wrote down an appointment with him in my book on two separate lines: Katz on one and Nelson on another. I always get appointments at strange times like 9:25 or 10:20. Since my handwriting is so illegible, and the appointments are scheduled at least three months in advance, when I saw that appointment later, I couldn't figure out who Kate Nelson was. And when I had her written down and why I had her written down at such specific time.. so now I called Dr. Katznelson Kate Nelson. I think he's a little annoyed.
I also have to see a dermatologist because the medication I'm on, tysabri, has a very slight risk of increasing your chances of getting melanoma. So once a year or so I have to go to her for a full body check. She loves to cut stuff off of me. I have lost more moles and skin tags and I ever knew I had. She must have gone to medical school with Dr. Katznelson. Dr. Katznelson's first name is Ian and she always asking about him but she calls him Eye-an. Which I think is kind of funny. Her office is in this place in Glenview called The Glen. It used to be an old naval base at was converted into an office/shopping center and it is very ritzy and upscale. She is one of those doctors who although very nice just strikes me as a little bit distant and more interested in income and in her patients. The neurologist clinic is very down to earth and unostentatious. You can learn a lot about your doctor's bedside manner and how comfortable and connected you feel when you go to their office. I always feel like I am a little inconvenience in to the dermatologist staff.
My oncologist, Dr. Rose, who administers my medication is a very sweet wonderful man who always asks me what I'm reading on my Kindle and what I'm doing for the holidays and things like that. He thinks I'm smart, also, and talks to me intellectually. My ophthalmologist likes to talk to me about philosophy and history and esoteric subjects like that.
Doctors are an interesting breed.
That's enough for today. See you tomorrow with more fabulous insights about MS!
I have met other people who have MS who simply see their GP. I love my GP. She's wonderful and very smart. But I frequently educate her regarding the MS medications. I think that a neurologist is crucial for proper treatment for MS.
My first neurologist was Dr. Kovaleski. Once he realized that I was of moderate intelligence, I think he actually enjoyed having me as a patient. He would give me the usual MS once over; check my reflexes, watch me walk, ask me about new symptoms; And then he would start to talk to me about his own issues! He would say, "you know I'm sort of worried about my daughter...". Some days I thought I should charge him! He had five daughters and one of them was my physical therapist. I told her about his digressions with me. She laughed and said it means he really likes you!
Dr. Kovaleski eventually semi-retired to Galena where he is now a sleep specialist. My clinic must be the neurology group of weird names, because my choices for a new neurologist were either Dr. Misra or Dr. Katznelson. I picked Dr. Katznelson because he was available on Fridays which might seem a little arbitrary but sometimes choices are made for convenience! Dr. Kovaleski was a tall Catholic men and came across a little like an absent-minded Professor. Dr. Katznelson is a short Jewish man who is very intellectual and likes to use big words. Once I told him I get extra tired after a meal and he said I had postprandial fatigue... but my favorite Katznelson story is not about his words. Once I wrote down an appointment with him in my book on two separate lines: Katz on one and Nelson on another. I always get appointments at strange times like 9:25 or 10:20. Since my handwriting is so illegible, and the appointments are scheduled at least three months in advance, when I saw that appointment later, I couldn't figure out who Kate Nelson was. And when I had her written down and why I had her written down at such specific time.. so now I called Dr. Katznelson Kate Nelson. I think he's a little annoyed.
I also have to see a dermatologist because the medication I'm on, tysabri, has a very slight risk of increasing your chances of getting melanoma. So once a year or so I have to go to her for a full body check. She loves to cut stuff off of me. I have lost more moles and skin tags and I ever knew I had. She must have gone to medical school with Dr. Katznelson. Dr. Katznelson's first name is Ian and she always asking about him but she calls him Eye-an. Which I think is kind of funny. Her office is in this place in Glenview called The Glen. It used to be an old naval base at was converted into an office/shopping center and it is very ritzy and upscale. She is one of those doctors who although very nice just strikes me as a little bit distant and more interested in income and in her patients. The neurologist clinic is very down to earth and unostentatious. You can learn a lot about your doctor's bedside manner and how comfortable and connected you feel when you go to their office. I always feel like I am a little inconvenience in to the dermatologist staff.
My oncologist, Dr. Rose, who administers my medication is a very sweet wonderful man who always asks me what I'm reading on my Kindle and what I'm doing for the holidays and things like that. He thinks I'm smart, also, and talks to me intellectually. My ophthalmologist likes to talk to me about philosophy and history and esoteric subjects like that.
Doctors are an interesting breed.
That's enough for today. See you tomorrow with more fabulous insights about MS!
Saturday, December 1, 2012
Canes
I resisted using a cane for a very long time I figured it made me look old. . It was a visible reminder of MS and made me have to come right out of my comfortable denial. The last few vacations I took where I didn't need a cane, or at least not all the time, were in Toronto and San Francisco. I got to go there when my brother in law was touring with Mama Mia. I remember walking all over the place in Toronto. I don't even know why I took a cane! San Francisco was a little trickier. Probably because of the hills...duh! I remember struggling a little bit more to do things like get on the trolley. I acquired my favorite cane while I was in San Francisco. I didn't take a cane for some reason. I think we're going to go try to buy one somewhere. My sister was staying at a very nice residency hotel. We happen to mention to the concierge that we needed to cane. She said I've got one in the basement that someone left here once. It was a great cane with a molded handle. Much nicer than what you can buy in a store and I am sure it was custom made. At the end of the trip, after using a cane the whole time, I ask if I could buy it from her. She knew I live near Chicago, and made me a great deal. Buy her some Frango mints and I could have it! I'm pretty sure I've got the better end of that deal!
Since then, it has become more and more necessary for me to use the cane. Some of it is because my balance is so bad. My current neurologists says my balance problem is cerebral and not due to dizziness or vertigo. The other reason I need a cane is due to muscle fatigue. After a while, my legs just quit working and I look like Lurch from the Addams family.
I actually can really tell the difference between a regular canes with a curved handle and my special cane with a molded handle. The molded handle cane is much more sturdy. You wouldn't think it would make that much of a difference, but the other day when I had accidentally left my good cane in the office and I was using a regular cane. I went to work out on the elliptical, and afterward, I actually had to have someone help me to my car because the cane was just not hold me up.
I've tried to get some other canes that are more attractive, but they just keep going back to the little molded handle cane from San Francisco.
When I am using the cane, I frequently get mistaken for a little old lady. People ask me if I need a senior discount and talk to me as if I am just a little bit senile and don't understand modern conveniences. The fact that I had to revert to glasses from the contact lenses a few years ago doesn't help either. And the fact that I actually getting up there in years probably contributes,too.
The next time someone asks me if I want the senior discount I'm just going to say yes.
The thing about the cane that makes me feel a little bit better, is it means I am not in a wheelchair. A few times I have used a wheelchair for vacations. Makes it a whole easier to shop! It is so interesting to me, how much being a wheelchair means that I am invisible. Although people sometimes talk to me as if I'm old and senile when I use the cane, in a wheelchair people don't talk to me at all! I know that people understand that there are perfectly intelligent people who are in wheelchairs, but I think the fact that you are not eye to eye when you are sitting in a chair does something to the power differential between people. Someone sitting in a chair is not capable of much, and are treated that way.
In Adlerian Play Therapy, Terri Kottmann discusses the crucial C.'s. These are things we all need to feel. They are courage, capable, connect, and count. Sometimes MS takes away all of those things. And being a wheelchair, while it would definitely take some courage, means you feeling are incapable, disconnected, and that you don't really come to the world and any more.
So while using the cane is not something I am thrilled about, I am not sure that I am ready to forage in the world of tryiing to embody the crucial C's from a wheelchair. The next time you see someone who is in a wheelchair looked at them in the eyes say hello just as you would someone else walking down the street. Or I may have come over there and whack you with my cane.
Since then, it has become more and more necessary for me to use the cane. Some of it is because my balance is so bad. My current neurologists says my balance problem is cerebral and not due to dizziness or vertigo. The other reason I need a cane is due to muscle fatigue. After a while, my legs just quit working and I look like Lurch from the Addams family.
I actually can really tell the difference between a regular canes with a curved handle and my special cane with a molded handle. The molded handle cane is much more sturdy. You wouldn't think it would make that much of a difference, but the other day when I had accidentally left my good cane in the office and I was using a regular cane. I went to work out on the elliptical, and afterward, I actually had to have someone help me to my car because the cane was just not hold me up.
I've tried to get some other canes that are more attractive, but they just keep going back to the little molded handle cane from San Francisco.
When I am using the cane, I frequently get mistaken for a little old lady. People ask me if I need a senior discount and talk to me as if I am just a little bit senile and don't understand modern conveniences. The fact that I had to revert to glasses from the contact lenses a few years ago doesn't help either. And the fact that I actually getting up there in years probably contributes,too.
The next time someone asks me if I want the senior discount I'm just going to say yes.
The thing about the cane that makes me feel a little bit better, is it means I am not in a wheelchair. A few times I have used a wheelchair for vacations. Makes it a whole easier to shop! It is so interesting to me, how much being a wheelchair means that I am invisible. Although people sometimes talk to me as if I'm old and senile when I use the cane, in a wheelchair people don't talk to me at all! I know that people understand that there are perfectly intelligent people who are in wheelchairs, but I think the fact that you are not eye to eye when you are sitting in a chair does something to the power differential between people. Someone sitting in a chair is not capable of much, and are treated that way.
In Adlerian Play Therapy, Terri Kottmann discusses the crucial C.'s. These are things we all need to feel. They are courage, capable, connect, and count. Sometimes MS takes away all of those things. And being a wheelchair, while it would definitely take some courage, means you feeling are incapable, disconnected, and that you don't really come to the world and any more.
So while using the cane is not something I am thrilled about, I am not sure that I am ready to forage in the world of tryiing to embody the crucial C's from a wheelchair. The next time you see someone who is in a wheelchair looked at them in the eyes say hello just as you would someone else walking down the street. Or I may have come over there and whack you with my cane.
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