It depends on my perspective on the events of the last twelve months. A year ago I was healthy, employed, and looking forward to vacationing with my wife; two months later I was paralyzed and totally dependent on other people for everything.
The significance of getting better is not lost on me. I always felt that I would regain the use of my arms and legs. But being paralyzed was only a symptom; chronic inflammatory, demyelinating polyneuropathy will be with me for the rest of my life.
At this point in my recovery, I need to wear ankle-foot orthotics, that are designed to improve my gait. They are knee high, plastic supports that go into my shoes. I am a little wobbly on them, but they provide me with an amazing amount of stability. They uncomfortable, hard to put on, and ugly as hell. I struggled not to retch the first time I put them on.
They are a loud siren to the TABs that I have a disability, just like the obnoxious klaxon that sounds whenever I put the motorized shopping cart in reverse. While being there to help me, they also accentuate my disability. Both devices do the same things: embarrass the heck out of my in front of what used to be my peer group.
I know I shouldn't shouldn't be so self-conscious! I can't help it, but I would not have recognized that my vanity was interfering with my progress unless I was writing a blog about myself.
I started writing because a friend in school once told me that if I am having trouble saying something clearly, it might be because it's not clear in my head. Writing about what is happening and how I feel about it clarifies my thoughts.
Writing this post helped me realize that my difficulty with the ankle-foot orthotics was was entirely in my own head. The reality is that I have no control over what other people think and the ankle-foot orthotics enable me to walk much better.
My anniversary is next month and I had been feeling glum about it. It will be an ugly reminder that I will only recover so far: I will always have chronic inflammatory demyelinating polyneuropathy. But when the sidewalks are clear of ice and snow, the weather is warm and I have my new superhuman abilities, how can I not celebrate?
Please feel free to leave your comments below.
There will always be people who judge you on your appearance. Fortunately, it's my experience that true friends are not those people. I know that knowing this intellectually and believing it in your soul are two different things, but I also know that it's good to hear it from someone else. I am your friend no matter your appearance, because I like Michael for Michael.
ReplyDeleteI am also very proud of you, not only for all the work you've put into physically recovering, but for your increasing self-awareness and introspection. Sometimes the hardest person to face is yourself.
Laura, thanks for the comments. Adrienne and I are so grateful to you for all the support and love you have given us since you moved to Oxford.
ReplyDeleteI was also diagnosed with CIDP when I was 13. Like you I was on paralysis, and could not talk, or open my eyes for I did not have the strength to lift my eyelids, or move my tongue. This lasted for a couple weeks and I regained strength, however I could not stand or walk. This lasted for about a year until I made a miraculous recovery.
ReplyDeleteI am now 16, a sophomore in high school, and play all varsity sports. My recovery was amazing however I am so blessed to have this disease. I suffer from pains with physical activity, numbness and burning, but those all drive me to work harder.
I was told I would be in a wheelchair the rest of my life.
Do not give up hope!
J-congratulations to you on your recover. That is an isnpiring story to be sure.
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