When people see me, most tend to believe that I'm doing quite well since after 21 years with MS, I am still ambulatory with the aide of my funky purple quad cane, am able to drive most of the time, live alone and appear happy because a smile is usually on my face. On the outside I admit that I look pretty damn good, but it doesn't tell the tale of what the MS has done to me.
When I was first diagnosed, I couldn't imagine anything worse than being without the use of my legs. That is, of course, until I began to have trouble using my hands and realized that not having them at my disposal was far worse than not walking. I could no longer straighten my hair, which I had been doing for over a decade and now had to "embrace" my natural curls and at that time, this was a fate worse than death! I now love my curls, but it was a difficult transition. On a much more serious note, imagine trying to eat or cut your food when your hands are not responding to the signals your brain is sending. Or try writing or typing. And worse yet.. imagine trying to "wipe" after going to the bathroom. Yeah, this was my life and it was horrible. Not a moment went by when I wasn't in tears and this was back in 1999, at the end of a very bad first marriage.
The next thing to go was my short-term memory. Oh, my goodness, this was a scary one! I remember so clearly one day when I was driving home and I couldn't recall for the life of me where I lived, which exit was mine, what town I lived in, NOTHING. This was before I had a cell phone, but I don't think I would have even remembered to use it if I had had one. It was frightening. I have no idea how on earth I eventually made it home, but I did a few hours later. And then I would call my mom over and over again and tell her the exact same things until she finally told me that I needed to leave myself a note that I had already called her because I was beginning to frighten her. To this day, I have sticky notes all over my computer and many calendars all over my house or I'd forget pretty much everything.
I used to love reading novels. My younger brother is a writer and I enjoyed reading what he wrote but I can no longer even do that. My mind no longer allows me to comprehend any sort of abstract writing. Medical books.. yeah, I can follow those since they are full of facts and I don't have to use my imagination. But the worst part of this is that I used to be a poet and was even published a few times. I lost that part of me along the way and it was a huge loss. Losing that part of myself still makes me cry. Dammit, I was good! When I read the things I wrote, I can't believe I was able to create such beautiful works of poetry and now it's just gone, gone, gone.
|The marriage sucked, but my cake rocked!|
|my beautiful mom, celebrating 25 years cancer-free!|
|taken on Mom's cancer-free anniversary, January 2011|