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Thursday, March 7, 2013

Walk a Mile in Their Shoes

Last year when she turned 30, my friend Janice's husband commissioned this birthday cake:


That's Janice's brain (I mean, well, it's a picture of her brain, obviously, real brains taste terrible. And also if they had used her real brain for the cake, she wouldn't have made it to 30). The white spots that look like they don't belong there aren't icing, they're the lesions that accompany multiple sclerosis. 
And if this cake seems more appalling to you than funny, then you don't know Janice. Janice wears blatant eff-me pumps when she goes out in her wheelchair because, if her feet are going to be purely decorative, then she's going all out. She insists that she'd be safe in a zombie attack because zombies would turn up their noses at her brains (I'm dubious, but who am I to argue with the crippled lady?).
Through medication, determination, and a hell of a lot of work, Janice is in remission; she's doing so well, in fact, that she's participating in Walk MS Akron this year. You might think it's greedy of her to demand more donations, what with her having raised over $1,300 already. But come on man. Throw the crippled lady a bone.

She's been posting chapters from her story on her Facebook wall in honor of National MS month, and it turns out it's not all rock star parking and stripper shoes. 

Here is one chapter from May 2, 2007. I cannot imagine ever being this brave.
"It always seemed as though I lived in a state of cognitive dissonance. There were times I would lose track of where I was or what I was doing. I would look over my notes for class and see a jumbled replica of English. I learned how to translate what people were saying to me, I didn't interpret things the way everyone else did. People thought it was because I was lazy, or less intelligent, or incapable; in some aspects they were right. And I agreed with them. I remember times when I would ask Lucius to "remind me where my leg" was. He would lift it and we'd laugh and think 'gee that was strange!' 
Last year I spent the majority of it numb from the armpits down. People don't think of how much that affects. That's not just your legs but the armpits, breasts, stomach, hips, buttocks, thighs, calves, knees, ankles, heels, soles, toes... It started slow. I had a numb patch of skin on my right arm above the elbow underneath the armpit. It itched like crazy... and it started to spread through my chest. It was a few says before my toes started to go. It took a week from the first loss of feeling in my toes to spread through my legs. In the meantime I was taken ill with nausea. I was so incredibly weak, it was frightening at first. Then I was too weak to be scared. I spent a month eating next to nothing. For the longest time I couldn't feel if I needed to go to the bathroom. I purposely made myself get up and go 'just in case'. And even when I went... I couldn't be entirely sure when I was done. So I just had to wait. Even after that I can't feel if I'm clean... so I used babywipes to make sure. I couldn't even feel the moisture from that or the cold. I could just barely get in the shower and once there I had to rest before I picked up the soap. I could never remember what I had just washed. I could have washed my hair five times in one sitting... I had no idea. Once I finished showering I went to the bedroom and waited for Lucius to come in to help me. I couldn't bend over to put on my underwear. Once Lucius had dressed me I needed to rest for about 20 minutes. I hadn't dressed myself and yet I had no energy. After awhile Lucius would help me down to the living room. I don't even remember what I would do. It's amazing how time can pass without your noticing. If Lucius kissed me I could just barely feel it... I had to be careful how I moved my head because the vertigo was enough to make me fall over. I couldn't lie down for the dizziness and nausea. I couldn't lift my legs into the bed anyways. I slept in our recliner in the living room. I had been doing that awhile due to nausea. Now I know why. Funny. Newlyweds that can't even sleep in the same bed in the first year of marriage. And I thought it was all my fault. Guilt doesn't have to be rational. My diaphragm was shot, I was too weak to use it. I couldn't sing most of last year, and that pained me. I would get too dizzy from lack of air and effort. I would sit in church and sing inwardly the hymns. I would cry because I couldn't use my voice for something I loved and had always taken comfort in. 
Nowadays I fight psychological symptoms the most. During Alumni weekend that I had fought off dozens of panic attacks that day alone. Having to start conversation, keep conversations flowing, decisions of ANY kind... it all starts a panic. My mind shuts down and everything goes away. Decisions as simple as "should I use a pencil or pen?" can cripple me. It saddens me when i can't do things. I want to cry when I see my glass of water but know that at that moment I can not lift it. I feel defeated when I haven't the strength to open a packet of Tylenol.
I wish more people knew about this disease."

Don't forget to donate, kids. I don't know if science is anywhere near a cure, because I read the Wikipedia article and there were a lot of big science words. But I do know that any steps science can take to help more people with MS participate in more Walk MS events are worth it. 

As are you, J. and K. My thoughts and love are with you now as always.

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