Lately I have been wondering about how I perceive all the changes in my life.   It is like I am another person, watching every move, every experience and noticing every change.

Always pursuing perfection in my appearance, down to the most insignificant detail, I wonder now why I do not experience shame, fear or embarrassment as it becomes more and more obvious to everyone I meet that something is very wrong with me.  I still do everything I am able to present myself well; as I have written in earlier posts, my appearance has always been important to how I feel about myself.  When I look good, I feel good.  I have confidence.  But now, regardless of how attractive the outfit, or how carefully I apply my make-up, or style my hair, I still look weird.  That is a harsh way of putting it, I know, but it is true!

When I first noticed weakness in my legs, I was able to control my gait with some effort and hide the symptoms of muscle loss.  I would walk more slowly.  Now, however, there is no hiding anything, and no desire to either.  I wonder about this, as if I am someone else looking at myself under a microscope.

It is so difficult to hold my head up that when it flops down, it takes an enormous effort to move it back up on my shoulders.  Sometimes, I cheat by using my hand to lift up my chin.  Once it is sitting up correctly on my shoulders, it stays there without a great deal of effort, unless I have to do something.     For some reason, walking up stairs is a challenge, and my head typically drops down and stays there until I reach the top, but if I hold onto a railing, I am able to hold it up.

Tonight I was walking Mollie around our neighborhood .  Slowly and laboriously I made my way around, Mollie walking slowly too, such a good girl.   Two neighbor women came out when they saw me, gave me nice hugs and wished me well.  I wondered how I must look to them and I realized that they and most others feel really badly, watching me struggle.  I used to worry about people pitying me.  I am no longer concerned.  I have come to know for sure that people are inherently good, kind spirited, with a great capacity for empathy. 

I do not particularly enjoy this!  But I do love seeing my long-held belief about people realized.  My illness has brought out the best in people.  Even strangers are caring and helpful.  It was rather amusing the night recently, when I took Christopher, my grandson the dancer, to the musical American Idiot.  I went into the ladies’ room before the show started, and when I reached the cubicle, I was unable to unbutton my pants!  I had to walk out, holding my pants like a child, hoping someone could help.  Admittedly, I received many strange looks in that first few seconds because of the sight I presented, but also being unable to speak I was forced to gesture toward my buttoned pants and try to speak the word “help.”  It sounded like a grunt.

Finally, I approached a woman as she entered the rest room area and she was kind enough to help me.  When I was finished, I prayed that I could rebutton them myself, and these  prayers were answered.  It was a bit embarrassing, but not to the degree that I might have expected.

I guess it comes with acceptance.  Acceptance of our circumstances makes life much easier.  I am reminded of the Alcoholics Anonymous prayer: God grant us the serenity to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference.  I have come to know the difference.

It was a gorgeous spring day; all the flowers are in bloom and many trees are still blossoming.  I took a ride on my scooter, with my iPad in the basket, hoping that I would encounter someone along my way to say hello.  Soon, a neighbor out for his daily walk approached.  I grabbed the iPad and wrote: There is more than one way to walk, and more than one way to speak.  We both laughed, he gave me a loving pat and we were on our way.

And so dear readers, I will continue to walk in my new cumbersome way.  I will use every ounce of strength that God gives me to hold my head up high.  For I am not ashamed, or embarrassed.  This is my journey; my sacred contract with God.  I will give it my all until the very end.  This is my promise to myself and to all of the wonderful people who love me.

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