I wrote this in order to apply to be an MS Ambassador for the MS foundation, but then I got derailed by the Shingles and missed the deadline for this round.  I am keeping it just in case another opportunity presents itself.


I have been diagnosed with MS for almost 20 years.  I am waiting for the day when the years that I have been living with MS out number the years without.    There are times when I don't think about it, and I am just a person going about my day.  But so much of my day is impacted by my diagnosis, that it is getting harder and harder to slip into a comfortable level of denial and feel normal.

I think about MS in terms of what I can and cannot do in a normal day.  My initial symptoms were common sensory disturbances:  Hearing loss, dizziness, optic neuritis.  Now, I am most impacted by my difficulty walking and becoming easily fatigued.  No more long trips to the mall or walks down the block to the convenience store for milk.  My thoughts are always on where and when I can sit down and, for God's sake where's the bathroom!

I enjoyed reading about the phenomenal people with MS who manage symptoms with macrobiotic vegan diets and long yoga sessions.  I become inspire to change my own diet or twist my body into unusual poses while keeping my mind perfectly still.  But it isn't long until I'm looking for the television remote control while reaching for a plate of full fat chocolate chip cookies.  I feel guilty and then I forgive myself for being a regular person.

I have been a helper for my whole life.  I come from a long line of clergy people and missionaries.  I was taught that it is better to give than receive.  I now find myself on the receiving end more and more often.  I need help standing up after a fall.  I need help carrying things to my car.  I need help opening doors, making dinner, cleaning my house.  And I forgive myself for not being able to come up with a fancy way to be self sufficient.  I forgive myself for being a regular person.

I want to be an MS Ambassador because I am a regular person.  I want to let people know that they are all doing the best they can with what they have from where they are and it is okay to not have the perfect diet or spend 8 hours a day in the gym.  It is okay to be a regular person.

Although I have not been able to formal MS awareness activities, I try to live my life everyday, embodying dignity and realness.  I try to be someone who make the world a nicer place in which others exist.  I keep my sense of humor about myself.  I appreciate other people for just being human. I want to be able to bring self-acceptance and joy to other people trying to be more than their diagnosis. I want them to know it is okay to forgive themselves for needing help or for barely making t the fridge let alone preparing a healthy meal.  It is okay to be just a regular person, living an ordinary life.  Managing MS on a daily basis makes you extraordinary enough!

Here s part two of my answer to my niece:

Hello again, Misty,

I also appreciate the opportunity to communicate with you!  You probably don’t remember this at all, but Uncle Dana and I visited CA way back when you were about 4 years old! That was in 1992 or 93, I think.  My favorite memory of you, is that you fell asleep on Dana’s lap after lunch!

Regarding you questions:

My family and I attend the United Church of Christ.  This is a liberal mainstream protestant religion with roots in the Germanic Evangelical and Reformed tradition.  I was never taught that the Bible was the inerrant work of God, but rather a book of theology written by man using metaphor and traditional lore to explain God to people in ways they could understand.  I was never taught that there was a list of rules to follow, but rather, that I was to use free will and thought to understand my place in the hand of God and how to live according to the best interest of all mankind. 

About God being energy; I do not believe God is an energy.  I believe God is The Energy.  The energy that animates life and creates and inhabits everything.  Everything is energy and that energy is God.  Because God Energy makes up everything, there is no way for us to be separate from God or each other.  When Jesus said that if you do something to my brother, you do it to me, he was not speaking metaphorically!  He meant, what you do to one, you do to all since we are all connected through God.    

This is my understanding based on all the teaching from all the wonderful theologians in my world, but also based on my own knowledge of the world and science.  Science and religion are not mutually exclusive.  The same God that created minister, also created scientists!  Our job as thinking humans with freewill, is to find God in all things, make sense of the knowledge provided, and then use that knowledge to better the lives of ourselves and others. 

The main teaching of Jesus to me is to love your neighbor as yourself.  To care for everyone and to love the vilified and disenfranchised as much as anyone else.  It is easy to love people who look like you and think like you.  It is much harder to love people who are unfamiliar and who think and do things which are outside of what you consider normal or moral.  Needing to turn the other cheek to those who want to hurt you, is the hardest part of being aware of God in everyone. 

My understanding of God helps me to love and have compassion for everyone.  I have to always be aware of God in everyone in order to try to take a path to acceptance. 

I believe I have probably over explained things!  I hope tis gves you a little more insight into me thoughts, and I hope you do well on your class project. 

Amys part two of my answer to my niece:

Somehow my original published post reverted to this one with no explanation of what this is.  My niece (by marriage) asked me to answer these questions for a class project.  She is a senior at Bob Jones University in S. Carolina.  I hope my answers don't rock her world, too much!  In the words od the immortal Margo Channing in All About Eve:  Fasten your seaat belts!  We'rein for a bumpy ride

Dear Misty Dawn,

I am honored that you have asked me to answer these very challenging questions for you class.  I want to answer them as thoughtfully as possible.

Something you may not know about me is that I come from a long line of highly educated Theologians.  My great grandfather Baur came to the US from Germany.  He rode the train from the port in New York to Chicago then walked from Union Station to Elmhurst, IL (not a short walk!) to attend Elmhurst College.  He eventually attended Eden Theological Seminary in Webster Groves, Mo and became a professor there.  My Grandfather also was an ordained minister as were two of his brothers. All six of his sisters were married to ordained ministers as well.  The lone lay person of the 10 siblings became a psychiatrist because, he said, someone had to figure out all those crazy ministers.
My father followed his father into seminary as well.  He has a doctorate in theology with a concentration on the old testament.  My mother's father was also a minister and played a prominent role in the synod heirarchy.

So my thought re religion have been thoroughly informed by educated and thoughtful theology.

So here goes:

#1.  Does God exist?

God most certainly does exist.  God exists as the energy that animates and creates everything. Science tells us that energy cannot be created or destroyed.  It can be harnessed and channeled by a variety of means. Extinguishing a light or turning off the TV doesn't stop the energy. It simply means we are no longer tapping into the energy that has no beginning and no end.. There is no such thing as a true vacuum (completely empty space)  because, even in a vacuum, there is a field of energy.  This energy is God.  It is within all things around all things, continues through time and space.  It is responsible for everything that ever was, is now and ever will be.  The most pure expression of this energy in humans is Agape love;  unconditional positive regard with no judgments and no limits.

This sort of answers your next question

#2.  Where did I come from?

You, along with everything else in the Universe, come from the same all loving never-ending energy source that is God.  You are part of everything that ever was or ever will be.  You, me, the black ants on my kitchen floor, the tacos, the grass, Osama Bin Laden...we are all one.  The energy that is God, created laws of nature that align to create biology and thus, human biological procreation.  So the science was created by God, but very slowly (and sort of inefficiently) to get your beautiful self into your body.

So, #3 Where does human intelligence come from?

Well, the energy that is God is responsible for creating biology with the capacity for thought.  In that very slow and inefficient way, life found a way to express thought, have emotions, understand our planet and attempt to understand our universe and what makes us,...  well,... us.  Human intelligence is a combination of things all of which are created and animated by the same energy source.   The Energy source which is God has unlimited capacity to create unlimited thought and ideas with no judgement or censure which means that the answer to question
 #4  Do I have a purpose?  is most definitely yes...and no.  Your purpose, the same as everyone else's, is to be an expression of the God energy: to create, to love, to be the best expression of you that you can be. But, no, I do not think that God would, or should, put specific people on the planet to do something that is pre-ordained.  Free will, by definition, means that we get to choose our purpose and roles.  What informs that purpose is our experiences and our biology and plain old chance.

Which leads us to
 #5.  Why do people suffer?  Suffering is a part of the human experience.  Because of free will, because of our human biology and connections to one another, we are provided with opportunity to experience the range of everything of which our biology is capable.  Suffering provides us with information that creates new thoughts and ideas.  Don't get me wrong about this.  Stuff happens because it just happens.  The creative energy created tsunamis and fires and mudslides, not for punishment or spite, but because they are part of the biology of the earth.  The creative energy created free will and the experiences that create murderers and psychopaths, too. But this is stopped/ameliorated by our desire to change the stuff that causes this sort of thing in the first place.  This is how suffering can lead us to make positive changes.  Stuff like seat belts, early childhood programs, social security came from our human desire to stop bad things from happening to people.  Despite the popular belief that the world is a dangerous place, it is actually safer to be human now than ever before in history.  This is, I think, a direct result of our use of creativity, free will to find ways to stop human suffering.  

One thing I absolutely believe about this, is that if we all remembered that we are all part of one universal connected energy source, we would stop treating each other so badly.  We would stop judging each other and try harder to understand each other.  Look at the word ATONEMENT.  Take it apart and see that this word is actually At-One-Ment.  If we were at one with this source that is God, we would not suffer in the ways that we do because we would realize our own worth and the worth of everything and everyone.  However, I also believe suffering provides us with opportunity to be fully human and to gain empathy and compassion for others in order to bring forth love and kindness into the world.

#6  Is there life after death?  Remember that energy cannot be created or destroyed and  it is impossible for us to be separated from the source, even if we forget that fact.  So our energy certainly continues after we separate from our bodies.  After that, I can only speculate how our energy continues.  I choose with my free will, to believe that our intelligence remembers our human experience and reconnects with others who shared this experience.  I feel pretty strongly that we get to come back here as many times as we want in order to have the experience of being human in as many ways as we want.  However, having never been dead myself, this is pure conjecture!

#7  Can evil be overcome?  Evil is a creation of mankind.  Mankind  is a creation of God and God created the free will inherent in mankind. Woo!  What a conundrum!  My thought is, that if every person having a human experience suddenly become aware of our oneness, there would no longer be the expression of disconnection we call evil.  But, in order to keep the human experience as created by the source energy that is God, we must keep our humanity and free will.  So as long as human kind exists, there will probably be what we know as evil.

#8.  Can I distinguish right from wrong?  This is, perhaps, one of the more complicated questions.  Right and wrong are human created concepts.  God didn't create right or wrong.  God created man with free will and logic and we created concepts of right and wrong in order to maintain order in the world.  Humanly created "laws" are really just good ideas for us to follow so we can all just get along.  It is wrong for me to take your possessions, because you would feel angry and upset which creates dissonance between us.  This is not an expression of at-one-ness and this is not the best expression of the God energy.  So I guess that means it's wrong in that sense.  Does that make sense?!

#9  Can people know truth?  They can hopefully figure out what truth is for themselves and then live it.  But "truth" isn't necessarily the same for everyone.  Reality might be, but I'm not even sure about that!  All I am fairly sure about, is that laws of nature are pretty set.  So find your truth, and express that truth.  This is part of being the best expression of the source energy!

And finally,  #10.  Does education have a purpose?  YES. Nothing is possible without learning.  I'm not sure that formal education is absolutely necessary, but nothing occurs unless we are always learning and gaining knowledge.  So, congratulations on completing (or almost completing you formal education, and I hope you never quit being educated by the beautiful Universe and all the experiences it provides for you!

I have figured something out...

Writers are compelled to write.  It is an innate need; something they have done forever and with joy and fervor.  I am not a real writer.  My writing is erratic (duh) and laborious. .  I am, however, a pretty good story teller and I have some writing chops.  That is, I think I have a pretty good ear for prose and for the ebb and flow of the structure of a story. I enjoy that particular part of writing.  I may be okay at fiction, except have a hard time finding a good plot. I can only think of good character description which doesn't make for a very interesting read.  

Therefore, I have come to a decision about my blog.  Instead of trying to think of topics or interesting ideas in my head (oxymoron:  Amy's interesting ideas),  I have decided that I need to stick to writing when I feel like it and letting myself be more spontaneous.  When I was an undergrad, we had a writing assignment in class.  We had fifteen minutes to write and then we had to hand our paper to the student next to us to read and critique.  The guy who got my paper accused me of cheating because he didn't believe someone could write something that well in a first draft.  First off, what a jerk to accuse me of cheating.  Second, he must have been pretty sheltered to believe that my writing was exceptional, and third, I must be a decent writer. The teacher told him that my rough drafts were always pretty good, so she was pretty sure I didn't cheat.  So there.

After that caveat,  I actually have something in mind for this blog besides that caveat.

I started my hospice assignment on Monday.  I have been assigned to visit three ladies in a long term care facility.  Confidentiality dictates that I be very general in my descriptions.  I know that the likelihood of anyone reading this actually knowing any of these ladies is very slim, but I will still try to keep them as disguised as possible.

Here is my experience so far...

You would think that a long-term care facility catering to old and disable individuals would have a plethora of handicapped parking.  Not so.  The very fact that there is a parking lot is a plus, given that the facility is located on a busy street on the far north side of the city.  So I will not complain about having to park a fair distance from the entrance.  But I will complain that it was in a puddle of melted snow.

All three ladies are on one floor, but opposite ends of the hall, of course. 

I didn't really envision what hospice patients would be like.  I guess I was hoping for some in depth conversations about life and death.  Or being able to listen quietly as Someone relived beloved memories with me.  The reality of my hospice assignments could not be farther from this.  

One of my ladies is supremely uninterested in any visits from me.  It may be because I interrupted her in an uncomfortable moment with her nurse involving a toileting issue, but her husband was in the hall and he told me she just didn't want visitors at all.  It was nice to talk with him for awhile.  I have to watch my responses, because when I respond to statements in therapist mode, the conversation turns into something looking an awful lot like despair.

The next lady is sweet and happy to see me.  However, she is pretty much outside of reality as we know it.  She speaks in what we call "word salad" which is a mix of unrelated words and phrases, along with some actual gibberish.  I thought I detected some German sounding words at one point,but since all I can say in German  is "Spechen zie Deutch", and "Ich bin ein Geburtstagskuchen"  (long story), I wasn't able to try to reach her through another language.  As it turns out, she would not have responded anyway, because what I heard was actually Gaelic.  I am sad she cannot have a conversation with me, because I would like to learn some Gaelic.

The most "with it" lady (and I use the term loosely) is able to have a conversation, but really doesn't understand or remember much.  Her daughter comes everyday to visit and help with feeding etc.  She likes to sing.   Fortunately, I like to sing, too and I know most of the songs she likes.  The only song that may be problematic is I'm Looking Over my Four Leaf Clover.  You see, I only know joke words to that one.  So when I sing, I must be very careful not to sing Dead Dog Rover instead of the actual lyrics.   Maybe I should just avoid that one!  She also adds the word :Boom Boom: after every song. Maybe I could add Cha Cha Cha just to rock her world a little.

I will keep you posted as my visits go on.

Here are the lyrics to Dead dog Rover to the tune of Four leaf clover:

I'm looking over my dead dog Rover
That I over ran with the mower.
One leg is missing.  The other is gone.
One leg is scattered all over the lawn.
No need explaining, the one remaining
Is hanging above the door.
I'm looking over my dead dog Rover
That I over ran with the mower!

My Blog, my nemesis...

Okay, I've decided to only write when I am in the mood and have something to share.  Otherwise, it becomes a chore and is no fun and I over think and get boring or preachy.  So, I hope I can be consistent, but I will only be consistent when it is fun.. So today I am sharing some pics from high school.  My friend, Jere told me that I should put these on my blog so here they are.  

A word of explanation.  Jere had a cool silver car we called the silver streak.  The Car's Candy-O album had just come out and Jere wanted me to recreate the pose.  I had not seen the album so I sisn't know what he wanted me to do.  I never did get it right.  Here is the album cover art:

  Here I am being completely clueless.

I am wearing a leotard Jere bought me for the occasion:

Even if I would have done the pose correctly, there is no way I would have done the album justice,  My lady parts were not up to the task for sure, I don't even ask what I was thinking with the hair!  Plus ther is no way I was not wearing the skirt!

Sorry, Jere did you think I would leave that one out?!

Who do I want to be?

I haven't written because, once again, I have let myself try to write this blog like some kind of essay instead of just letting myself talk on the page.  I write better pre-edit and not thinking about it to much.

So here goes nothin...

I had an argument/discussion with my client about whether it is really possible for people to do what ever they want.  You get told as a kid that you can do whatever you want if you put your mind to it.  In some ways, I totally believe that.  Humans are amazing creatures with the capacity to create any eventuality.  But the truth is, that unless you have an unflagging belief, some support and are willing to jump through hoops, it isn't always possible to do anything you want.

Ask any kid what they want to be when they grow up, and you will get a concrete answer. When's the last time you heard a kids say they wanted to be an investment banker or am intellectual property lawyer?  Kids want to be  something they can actually see!  For my son, it was to be a "destruction worker".  He actually did a pretty good job with that one with no experience at all!  My nephew, Tyler wanted to be an Egyptologist, which sounds pretty abstract, but he really wanted to find Mummies and dig in the dirt!  My nephew, Robbie, wanted to be a race car driver.  His dad (my brother) told him that was fine as long as he went to college.  What kind of degree do you get to be a race care driver?  My youngest nephew, Alex wanted to be "a major rock star".   Not just a regular rock star.  A MAJOR one...

The point is, that, kids are still formulating who they are and where their interest lie.  In a perfect world, every kid could be free enough to dream big and feel they have a chance to be a major rock star when they grow up.  In reality, some kids just want to grow up!

My client pointed out to me that not everyone could do anything they wanted.  In my family, there was never a question that you were going to college, even if you wanted to be a race car driver.  It was never a question of "if you go to college"  it was "where are you going to college?" Once you were there, you could study anything you wanted, but you were going.  This became an unquestioned meme which was also accompanied by a lot of support and a significant value placed on education.  But what about families without the undying belief in the right to higher education?

When I worked at Lifelink Corporation providing therapy to foster children, I quit asking kids what they wanted to be when they grew after one of the kids answered,  "If I grow up, I want to be a Police man"  IF I grow up! So it really is not true that all kids start on a level playing field, believing that they are just as capable as everyone else.  Not everyone is capable of becoming a major rock star, or a major league athlete or a supermodel.  It doesn't matter how much you believe in yourself, you're not all that likely to win American Idol.

After talking with my client, I have decided to rephrase the question.  I don't want to know what kids want to do.   I want to know WHO they are going to be.  The argument/discussion with my client happened when he told me he was worried that he would end up a bitter, lonely alcoholic, just like his dad.  I told him that  he could decide to be different.  He could choose to be anyway he wanted to be.  He got angry and said "That's simply not true.  I can't be anything I want to be!"  He is quick to anger, but tolerant of my explanations. I didn't say you can do anything you want to do.  I said you can be anyway you want to be.  It is always 100% in your power to act, think, behave the way you want.  No one else gets to decide how you feel or how you act.

I actually hate when people say "No one can make you mad.  You make yourself mad."  That makes me so mad!  Actually, I may hate that way of saying it, but I love that I always get to decide how and who am going to be in any situation.  If I'm an asshole, it is because I decided to be an asshole. If I am nice to people, it is my choice.  Terri Kottmann, my Play Therapy idol, asks herself if she has been additive today.  She means did she add to peoples lives in her interactions with them.  Did she smile as the person she passed on the street?  Was she nice to the cashier at the grocery store? Every interaction is an opportunity to make someones life better or at least more cheerful.  You can choose to be additive if that's who you want to be!


Instead of asking kids what they want to be, we should ask them who they want to be.   Are they persistent and are they willing to struggle? Are they tolerant of differences?  Are they curious?  Are they empathic and willing to help.  Why isn't there a test for competence in these areas?  These skills will get you just as far or farther than knowing how to do logarithms  ( or even what the heck that is!)  I bet there are a lot of  great kids who miss out because they can't get a 26 on the ACT!  Who we are is so much more mportant than what we are.  Who we are helps know what we want to do and do it!  Have logarithms ever done that!

So ask yourself who you want to be right now and then be it.

I's been hard to write lately for a variety of reasons.

One big thing is this weather.  When I moved to Michigan from Missouri for grad school,  people frequently asked me if I had ever seen snow.  They also commented on my southern accent.  Missouri may have an accent but it ain't southern and I had seen plenty of snow.  How far south do they think Missouri is?

However, now that I am here in Chicago, I can honestly say, this snow is different from mid-Missouri snow.  Not the content necessarily, but the sheer quantity and staying power of it.  I remember the big piles of snow that were created by snow plows, but they generally stayed on the perimeters of parking lots.  Here, they are everywhere, including my own driveway.  In fact, we pay someone else to plow it, and the plow guy insisted on marking the edges of the driveway with stick so he could tell where is is. I thought that was overkill, but now the ends of the sticks are just barely visible over the huge piles of snow along the edge of the drive!

The snow texture is not conducive to anything other than impeding one's ability to move.  It is powder at first, than icy and slick.  Not packable enough for snow balls or good snowmen.  It may be okay for cross country skiing, if I could stand up on skis, that is.  It might e okay for sledding, but, oh yeah, we have no hills around here. I take that back, there is a fake hill in the park for sledding.  It is okay for a day or two, depending on the snow quantity, but then becomes a mud slide, with ruts where the kids have run their sleds over the same place thousands of times.

The cold is  another issue all together.    Everyone knows that Chi-town is cold (cooler still near the lake, as they say.) But someone needs to remind Chicago that it is not part of the polar north or the arctic circle and dial these temperature back to a livable number.  Yesterday, it was 15 below, for Dog's sake!   And that was before the wind chill!

The only thing good about the cold is the possibility that I may be able to literally freeze my ass off.  That would be okay...Go outside and have your ass fall off when you get back.  Lose at least 25-30 pounds with the Freeze-your-ass-off plan!

Actually, cooler weather is better for MS.  The cooler temps keep the myelin from swelling and blocking those nerve impulses.  Unfortunately, it doesn't make cleats grow on your feet, so the slippery sidewalks are still hazardous to my well being.

In addition to the grinding cold and and piles of snow, I also hate the short days.  It's always dark.  Even during the few hours that the sun is not on the other side of the earth, it is obscured by clouds dumping or threatening to dump more crap on my driveway.  MS is linked to vitamin D deficiency and the only way to really get vitamin D, in the necessary quantity, is through sun exposure.  Not happening in Chicago!

So, since I am having a hard time writing around the winter weather, enjoy these photos of my snow and ice experience.

The driveway pile

The sledding hill (The only one for miles)

office view

Not comfortable for sitting!