I am more than my MS. I am sure of it. At times it doesn’t seem possible that there is room to be anything but the MS. It reminds me daily of its presence. When I wake up and find my eyes don’t work or I can’t stand up, it beats me on the head.
The biggest tragedy of MS, in my perspective, is that is robbed me of the years in our lives when we usually feel the best (30’s). I got sick first at 29. It mostly went away for the next 12 years and I lived in denial as much as possible. My mother even said that maybe they diagnosed me wrong. Then my evil little friend decided to remind me of its ever present self in my life.
I learned that while it may not be visible, the disease marches silently on, damaging the brain. Only 10% of brain scars show up on the ‘outside’. The rest are not observable. When I first got sick at 29, there were no drugs to treat MS. I went for most of the next 12 years without treatment. When I got sick again, an MRI showed innumerable black holes in my brain.
When 40 came, a rash of exacerbations wouldn’t quit. I’ve been hospitalized twice. I had repeated bouts of optic neuritis, one of Bell’s palsy, and brain stem scarring that resulted in massive muscle loss. No more room for denial. I used to be able to ‘pass’ for normal. Not so lucky any more. I now have a cane, walker, and scooter to use when needed. It is hard though. Everyone can SEE those things. I have see people in scooters get run over in Costco. People with obvious disabilities are often seen as less competent. I know many have written on this topic. I know ADA is in place to help. But it doesn’t fix the inside of me. Having a child with disabilities awakened understanding and compassion in me that wasn’t there before. I think that has helped me deal with my own losses.
At 40, there were now the ABC drugs. I had a short run on interferon. It made me sick every other day. So we quit that one. Next we tried betaseron. I had exacerbations 3-4 times a year. So we now are using Copaxone. Even that didn’t do enough. Finally my neuro added Cellcept, a drug to fight organ rejection in transplant patients. That appears to have done the trick. I haven’t had an exacerbation for nearly 3 years.
It kind of comes too late. I lost so much balance, strength, and coordination that don’t seem to want to come back. Now I approach 50 with no confidence in my ability to maintain my lifestyle. I still can’t talk about early forced-retirement without crying. It is getting harder and harder to do my job. But Mossy and I are not living in denial so much any more and are trying to prepare for the loss of my income. I just hope I can put it off as long as possible.
My favorite MS mottos:
MS- my personal thrill ride
MS SUX
1 comment:
((hugs)) Sometimes I think it's rough, our being guinea pigs for these drugs, which, in a way, we are, though of course it's the only way they'll ever find what will really work for people like us. They may not cure it in my time but I sure hope by my son's or grandson's they do. It sounds like you've had a much more difficult time than I have and I admire your spirit here. Hang in there. I repeat my ((hugs))
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