Hello

It's been awhile.  I have been over-thinking.  I have been dithering about subjects to explore and whether I can be interesting or deep or insightful.  I have lost the essence of blogging, which, to me, is to write what is on your mind... and I have a lot on my mind,  I am political and emotional.  I am concerned about my future and whether I am doing anything that matters.  I am wondering where my life is going and how will I  manage my increasingly more annoying and debilitating MS symptoms.

So rather than trying to come up with some interesting topic for you, my small and simple blog, I am going to try to make this an actual blog and give you my current thoughts feelings and occurrences. I don't want it to be a diary because my day to day life is just not all that interesting.  

So here is what is on my mind right now

I have come to realize that I have two of the most n-sentimental men in my family.  My husband used to be at least a little enthused by things like birthdays and Christmas, but somewhere along the way he became a curmudgeon extraordinaire!  We put up a tree for Christmas, but the rest of the decorations sit in unopened storage bins.  I know what the problem is, but he won;t say it  even if he is aware.  He is the one who does the lion's share of the work.  If I do it, he gets mad because he is concerned that I will hurt myself or break something.  But if I don't do it, it doesn't get done.

My son is not much better.  We left his ornaments off the tree until he got back from school, and I had to basically beg him to hang them up on Christmas Eve.  Plus, he couldn't come up with anything he wanted as a gift, and he  s not the most gracious gift  recipient.  Where did I go wrong?!

We went to see Star Wars on Christmas day.  We saw it at the I-Max in 3D which was way cool.  Dana got miffed at me for eating popcorn.  I know the sound was annoying him, but it is annoying to me that he didn't just suck it up or eat some himself.  It is unnatural to not have popcorn at the movies!.  I really wanted to get a picture of the three of us in our 3-D glasses, but there was not even a glimmer of cooperation for this particular photo op.

So as usual, my friends and family have lovely pics of festive homes with big family dinners and general Christmas frivolity, and I got nada.  

All right.  It sounds as if I don't appreciate my family.  I do.  They are phenomenal in so very many ways, and I am no picnic for them to manage, I am sure.  Just need to vent regarding my sad little holiday celebrations.  There are more important things than Christmas decor, most of the time!

Hello again

Here's something to know about me.  When I disappear for a long while, it is because I get into a low place.  Not depression, because I still able to function and do what I need to do,  Ie,  change my self talk, distract myself, etc. I can's say that just chucking it all and leaving the planet hasn't crossed my mind, but there are just too many things to consider and by the time I do consider them all, the idea has passed.  Plus that Dorothy Parker poem plays in my head and I realize it would be too messy for the people who would have to clean it up.

For reference the poem is:  Razors pain you.  Rivers are damp.
                                           Acids stain you.  Drugs cause cramp.
                                            Guns aren't lawful.  Nooses give.
                                           Gas smells awful  Might as well live.

Here are the thoughts that put me in a low place.  "I am a burden.  I am worthless.  No one would miss me.  I am lazy and sort of dim..."  You get the picture.  The other thought that makes me feel like a big steamy dog turd is "If you were a stronger person, you could follow a diet/exercise plan, and you would have more energy, walk better, be less fatigued etc...

These last few thoughts are particularly harmful and soul sucking.   These thought are called "victim blaming" or even "victim shaming."

Here's the deal. I have and am taking supplements including iron, vitamins D and B.  I go to yoga, physical therapy, and weight training.  I do as much aerobics as I can.  My diet could be better because, even though I have not eaten red meat since I was 25, I still like the occasional chocolate bar or a Culver's concrete mixer  (in lieu of Ted Drew's or , better yet, a Junior delight from Central Dairy in Jefferson City).  Despite my best efforts, I am still a good 30 lbs. over weight, and, oh yeah I still have MS and it is slowly progressing the way MS does.

Every time someone tells me that I should try the Wahl's protocol or go gluten free, or eat Paleo, I am being told that MS is my fault.  I know it is well meaning, 100% of the time.  But, I have heard of these diets.  I have seen Terry Wahl's TED talk touting her miracle diet for curing MS and pretty much everything else that ails you.

What I have not seen, however, is empirical evidence validating that these diets will have a similar effect on everyone who tries them.  The only research I've seen regarding the Wahl's protocol is that, in a very small clinical trial, there was on overall improvement in the subjects subjective sense of fatigue.  This is a giant leap away from being a cure.

Now, I am not saying that diet does not play a huge   our health, but it is one piece in a ginormous puzzle that creates wellness.

And sometimes a disease happens because you got dealt a shitty hand.

Be aware that if I knew for sure that some particular diet would "cure" me, I would be all over it like a cheap suit, but until I hear the news from a well developed clinical trial, I am not willing to make my life more difficult and less enjoyable for the off chance hat I may experience some minor alleviation in one area.  Until, then, I will do the best I can with what I have, from where I'm at, and I will call out myself and others when they unwittingly blame me for not being cured with diet.
                                         

This is a rant

I am taking time away from my life stories because I am sorely in need of some rant time.  I have talked before about what a lovely place denial can be.  For many year's I could almost pretend that MS had a very limited role in my life.  Occasional exacerbation and some mild hearing loss were just small bumps Annoying, yes, but severely problematic? Not so much.  Then problems began to be more of an actual issue a little at a time.  MS is a progressive disease, and it certainly has progressed.

 My handwriting, never really all that legible, became undecipherable, even to myself.  (Why are ipps on my grocery list?  Oh.  Eggs...)  I used to like to go on long walks around the neighborhood.  When Eli was an infant, I must have pushed him hundreds of miles in his stroller.  Then, one day, I walked several blocks by myself, and realized that I couldn't continue without resting.  Even after a ten minute break, I was limping and unable to stand upright by the time I got home.  I still didn't need a cane, but any walking I did was significantly curtailed.

I also remember the time I tried to run.  My sister was in town, and we were playing outside with our sons.  I tried to run to catch up with them, and realized that my legs were totally unable to respond to my request to move faster.  I think I may have even fallen.  I was laughing at how funny I must have looked, but it was an unnerving moment of realization that there was another thing I would never do again,  I was about 38 years old.

So my abilities have become fewer and fewer over the course of the past 20 years.  I continue to find denial a lovely place, but I have moved into the fourth level- I know I have MS. I know I am always going to have MS.  It has a significant impact on my life, but  I don't have any feelings about it.  I pop out of denial when I am tired or frustrated or angry and do the emotional work that is part of grief.  I grieve anew every time another ability to lost or another dream dies.

I think people dealing with MS or any chronic disease has enough crap to deal with every day.  I struggle to get in and out of the car.  I struggle to type this. I watched West Side Story on tv and wept.    I remember being able to sing those songs and hit those high notes.  Age is a culprit in taking my range, but MS took the muscles of my vocal cords.  I miss being able to sing.  And, my least favorite struggle, it trying to get to the bathroom on time.

I realize the incontinence is not uncommon in MS and is or even uncommon in the general population.  I have come to terms with finding the right incontinence pads and the neurologist has prescribed medication,to curtail the worst of it.  However, I still find myself with mortifying spots and having to change clothes in order to keep away offensive smells.

So now comes the real rant.  I am taking 20 mg of something called Oxybutinin.  I am supposed to take one in the morning and one in the evening.  I have discovered that, if I take them both in the morning, I can keep leakage to a minimum and am able to be more successful in getting to the bathroom before I have a problem. However, this means that I don't have one for the night and I have to get up more frequently,which disrupts my sleep even more than it is normally disrupted.  So I asked my very competent and well educated neurologist if I could increase my dose to 30 mg.  He listened to my concern and said, that it is okay to increase that articular med by that amount,  Cool!

 I want to the drugstore to pick up the med, but it wasn't in yet. I'll have to chew out the neurologist for taking so long!  Then I got a call from his office. Unfortunately, the insurance won't pay for the higher dose.  Someone, somewhere who is NOT a doctor has decided that I don't actually need this medication at that dose.  So something so incredibly humiliating that can be held off a tiny bit with a simple mediation increase, that my DOCTOR said is okay, that would help me feel a wee bit of dignity when so much has been taken by this dumb illness, is being denied to me because the for-profit health care system doesn't want to hurt it's bottom line.   There is something truly reprehensible about that.  So I am going to box up the content of my adult diaper pail, and mail it to my insurance company.  I may keep doing that every month until someone understands that , yes, IT IS medically necessary.

Thanks for letting me get that off my chest

Moving ahead

I want to write this next blog while the zeitgeist of the nation is freshly focused on race relations and marriage equality.  I won't be talking about the latter specifically, but the supreme court just made Gay marriage the law of the land, and I wanted to give my congratulations to all my gay friends who have gained a huge victory today.  I'm so happy about that!

 But this blog is focusing on race relations.  Here is the class picture of my fifth grade year.

I am  the girl with gasses on the bottom row.  I want you to note the difference between fourth and fifth grade.  My fourth grade class was incredibly homogeneous, as white as can be.  In fifth grade, the demographic was  beginning to change,  I mentioned the the kids from the Children's home attended my grade school, and indeed I recognize at least two girls who were residents of the Home, and they are both white.  The brown faces you see where simply a reflection of the changing community.  I mention this because fifth grade was my first real experience with blatant bigotry and discrimination,  And it was perpetrated by a friend.

Just to give you some background on my understanding of race in general, I want to tell a somewhat embarrassing story.  When I was little, we had a topsy-turvy doll.  It was one of those rag dolls with a big skirt, and if you turned her upside down, she had a different head where her legs should have been.  This particular doll was a "Nannie-Nellie doll- black Mammy (I know that's not PC, but that's what it was) on one side and a little white girl on the other.  Since it was all one doll, I figured it was all one person.  I concluded that, somewhere along the line we all just turned black.  I asked my startled mom when was Grandma going to turn black.  She let me know that black people were born that way and that was the end of that particular cognitive distortion! I think that times were so segregated that the only black person I had ever seen was an elderly black man.  Thus I created that very odd delusion from my doll!

Fast forward to fifth grade.The two black girls were Tracy and Clara.  Tracy was sweet and a little quite and Clara was bold and outspoken.  While they were not part of my inner circle of friends, I always felt somewhat proprietary and protective of them.  I wanted it to be my job to make them feel part of the class.  I think they were exotic and different to me,which isn't necessarily very sensitive or flattering, but it was better then hostility displayed by some of the other kids.

I was fairly popular and a leader at Harrison school.  Teachers liked me and kids liked me so I had no problems standing up for myself.  

My teacher that  year was Mrs, Movshin, who I adored.  We was firm but fair and gave us interesting assignments.  we were reading a story about a girl who attends a progressive dinner.  Progressive dinners are parties were you move from house to house for the different courses; so appetizers at one house, then go to the next for salad etc.  While we were discussing the story, one of my friends said "We should have one of those!"  We were talking about who could do which course, and Clara said "I could do dessert!"  My friend Lori say, "you can't be in it you're an N word" only she said the whole thing.  I guess I had heard that word before, but not in my house.  I didn't think about how insulting that was  I just looked at her, put my arm around Clara's shoulder and said "She can so be in the party!"  Because I was a leader, and Lori was my friend, she just glared at me and said no more about it.  

Skipping ahead several months, my Dad took the job as the pastor of the church in Jefferson City.  I have talked about this transition in other blogs but I haven't mentioned the send-off my teacher gave me from on my last day,  I was in the middle of reading the Laura Ingalls Wilder Little house book.  I think  I had read them all except one- "Farmer boy".  As a going away gift, the class gave me a hard cover copy of that book. All of the kids signed the inside of the dust jacket.  By far, the largest signature was from Clara who added "Your friend" before her name.  

I think I may still have that book around somewhere, but the dust jacket-and signatures-is long gone. 

I always wonder what it meant to Clara that I stood up for her.  I wonder if that iis why she thought of herself as my friend .  I hope she remembers me.  I certainly remember her and, although I didn't realize it at the time, I remember the lesson of how much she had to struggle for inclusion.

School days continued

My fourth grade teacher was Mrs. Stroessner.  Or I should say she was my teacher for most of the year.  Mrs. Stroessner had a baby and moved to Jefferson city.  This was probably when I began to realize that teacher were human beings with lives outside of the classroom.  I think, other than that, fourth grade was rather uneventful.

 My mind remembers the strangest things!  I have a clear memory of finding out about Mrs. Stressner's pregnancy at the class Christmas party.  Everyone participated in the gift exchange and everyone brought a present for the teacher.  My mom, having been a teacher, understood the importance of NOT giving teachers another "worlds greatest teacher" mug. We always gave the teacher stationary, which was useful for writing thank you notes for "World's greatest teacher" mugs.

One of the presents Mrs. Stroessner received that year was a toy bunny and some other baby related items.  I think she saw this as an opportunity to announce her pregnancy.  I am sure I have collapsed the two events (moving and having a baby) into a single announcement, but whatever the timeline, I knew she was moving on and I spent he rest of the day being sad.  After school I tearfully informed my sister of loosing my teacher to pregnancy and the move.  She told me I should be happy because having a baby was a miracle.  I thought, #1. No it's not and #2.  This was a stupid unhelpful thing to say.  I kept both of those thoughts to myself, of course.

The other thing I recall from that day is really odd. Everyone at school got a Christmas gift bag with candy, pencils, and other trinkets.  One of the items was a furry ornament with googly eyes, hung with a piece of elastic.  I immediately called a Bippy,  Remember on Rowen and Martin's Laugh-in how they used to say "You bet your sweet bippy"?  I'm sure they were not referring to a hairy ornament with googly eyes.  But the thing just seemed to be a bippy to me.  The odd thing about this is that I remember Beth (my sister) showing me her pink furry ornament (mine was yellow.  Why did she always get the good color?) and saying, "Look! I got a bippy!"   I distinctly remember thinking how weird it was that we both independently call these goofy things by the same name!  So while her advice regarding how to manage my feelings was trite and contrived, we still maintained our cosmic connection.!

The teacher who took over for Mrs. Stroessner was Mr. Hulsey.  A male teacher was a curiosity to me, but I remember that he was kind and funny.  The only thing that bugged me was how he pronounce the name Phoebe.  Mrs. Stressner had been reading a book aloud to the class as a sort of time filler I think.  She would read a chapter at the end of the day, and she was about half way through when she left.  The main character's name was Phoebe, but Mr. Hulsey pronounced it
 Ph-o-be with a long O sound.  We were too polite to correct him, of course, even though I am sure I am not the only one who noticed!

So now, not only was I aware that teachers were actually real people with real lives, I also realized that they were fallible, too.  So maybe fourth grade wasn't as uneventful as I thought!

Today is Father's day
Last week we had another mass shooting racist hate crime.
I also want to stay with my journey through my teacher memories.
I actually have a way to make all three things meld here.

I left off with my move to Harrison school in 2nd grade.  My dad had taken a position as the resident director of the Evangelical Children's Home in St. Louis.  The home had originally subsidized a  small tri-level home in a residential neighborhood for our family , with plans to convert it into a neighborhood group home.  Although this was something of which I could possibly have been aware at the time,  I am pretty sure the neighbors complained about the idea of a group home being there due to the possibility of black children being place there.  I can't be entirely sure that this was the complaint, but whatever it was, it meant that the plans were scratched and that's why we moved to the big house on campus and my education got moved to Harrison School in the Normandy school district.

I tried to look up Harrison school on -line.  It is still listed, but it doesn't appear on the Normandy district website as one of it's district elementary schools, so I am not sure if it is still there.  At the time, though, it was still a mostly white working class neighborhood school.  The children's home sent most of the residents there, and although the population of the home was mixed racially, it seemed to be a mostly Caucasian group of kids at the time.

By the third grade, I had settled in with friends and teachers and felt pretty positive about things.  Living on the campus of the children's home had its challenges, but generally, at my fairly young age, I was accepted as a friend and playmate.

The school had outgrown itself a little, so my third grade class was located in a small separate building along with the Kindergarten class.  I seem to recall the it was relatively new.  It had two classroom and two restroom, but we had to go to the main building for PE and lunch.  I l0ved my teacher that year.

Mrs. Donovan was the epitome of the old fashioned school Marm.  I'm sure she had been teaching for years and she really loved the kids.

Third grade is the year we were taught cursive and multiplication tables. When we were first learning multiplication, Mrs. Donovan explained the concept and then had us each take turn guessing what the answer was staring with 1x1. We started out  strong and then, as the numbers got higher, more and ore of us faltered.  As it turned out, Mrs. Donovan asked me to run to the main building for something.In the days before intercoms, it may have been something like letting the office know who was buying lunch or who was absent. I had calculated how many people were in line to guess the next equation, and then what my number would be when I got back.  I figured out it would be 8x8 so I spent the entire trip to the office adding 8's.  Sure enough, when I returned to my seat, and my turn came, I knew that 8x8 was 64, thus impression Mrs. Donovan with my prowess at math.  I have since realized that the math part of my brain is missing, but it was ice to be good at it for a few moments.  
Third grade was my first encounter with seeing a child display separation anxiety/school refusal. I can't remember anything else about that little girl except that she was new to the school and she wailed and sobbed as soon as her mom left her side.  I remember Mrs. Donovan trying to make her feel welcome, but the little girl suddenly darted for the open window and slithered though and was gone. The interesting part for me, was that I was keenly aware of understanding her feelings...being scared of the teacher and the kids; hating new surroundings; missing her mother.  The other kids laughed at her antics, but I just remember wishing I could help her understand that it would be okay.  I had been in her position and everything would be just fine.

I know that I said I would tie  this blog into Father's day and touch on the hideous shooting.

Although third grade was uneventful,I think it was the calm before the storm that was to come to the Normandy district as more African Americans move in and race relations reached a fever pitch.

I have a lot more memories of third grade, but I think you've probably hear enough for today.  I will end by saying Happy Father's day to the man who taught me tolerance and led me into a life of service.

Here is of my Kindergarten class.  I'll dig up some more for next time

More on teachers and a lot on learning

I left off with first grade.  I started second grade at Home Heights in the Riternour School district in St. Louis.  I have zero memories of the teacher I had at that school, which is odd for me.  I think it may be due to the significance of moving to a new house and a new school when we moved onto the campus of the Children's home.

We move around Christmas time.  I know this because I remember buying something for our class gift exchange.  Those were the days before political correctness and worries about liability.  Gift exchanges were a common practice and sexism was a given.  Girls had to wear skirts or dresses even in phys ed.  Boys chased girls on the playground and it was a given that every one would fall into gender roles with ease.

Given the sex divide, politically incorrect Christmas gift exchanges were generally separated by gender.  Since  I was new to the class, my mom bought gender neutral school supplies as a gift, just in case it was a random exchange.  Turns out it wasn't,,  Girls gift and boys gifts were piled on separate tables.  We all drew a number and gifts were selected (from the appropriate tables, of course) in numerical order.  My number was high, so I had to wait while the bigger and flashier gifts left the tables first.  I was less interested in getting a good gift than I was worried about someone having to receive pencils and notebooks when they selected my gift.

The girl (naturally) who picked mine was as gracious and appreciative as a second grader could be.  She thanked my and said  that was always happy to get new supplies for school.  I'm sure she cried all the way home.  I had to choose from the last two or three small packages left on the table.  Good things often come in small packages.  I got a really cool Liddle Kiddle  (remember those?) bracelet with a tiny little doll inside a tiny little locket.  Wish  still had that.  It's probably worth a fortune on ebay!

My teacher that year was Mrs. Feeney.  I don't think I could have been more fortunate in being assigned to her class.  There was a Japanese student in her class who was also new that year.  He spoke no English when he first arrive in her classroom, but Mrs. Feeney was so excited to have him in her class, that he was able to communicate and flourished by the time I got to the class in December.  She was excited to have me there, too, although I was a lot less interesting than Kazu!

She made Kazu into an opportunity to teach us all about Japan. We learned how to sing Rudolph the Red Nosed Reindeer in Japanese, and made a Japanese Christmas tree from newspaper. Kazu painted our names in Japanese figures for each of us (very inaccurate translation, I'm sure).  We always sung Happy Birthday to each child in Japanese and had Japanese bean cakes for snacks.

I don't remember if Kazu stayed at that school for more than just that year (or even for more than that semester), but Mrs. Feeney made his stay in her class something significant and wonderful for him and for everyone in the class.

Thanks, Mrs Feeney, for making my own transition to a new school, a welcoming , nurturing magical experience.