I have a love-hate relationship with my body. Because I hate being disabled. But on the other hand, there’s always a worse-case scenario, someone that’s worse than I am. And sometimes, mentally, it affects me, even after 20 years, but I have ups and downs with life, like anyone does.
But I’m thankful that I was disabled at this point in my life, because I have a wheelchair. Years ago, they didn’t have technology like they do today. So, I have a wheelchair, and I have an electric bike — I ride my bike. And then I have a wheelchair that I can stand up in. But at this point, I haven’t progressed in my disease, so that’s one good thing. It’s affected my arms and my hands, and I can’t stand or walk, so that’s hard. But I try to stay as positive as I can and surround myself with positive people.
I look at myself positively. At least I can speak, because sometimes multiple sclerosis (MS) affects your speech. My hands are a little crippled, but my friends, if I have to have something cut up, they’ll cut it up for me. Certain things I can’t wear or participate in because of my body. My friend has a swimming pool. I can’t swim like I used to; I used to be an avid swimmer. So things have been taken. I always say everything I do is affected by MS, and everything I can’t do is affected by MS. Which is true, really. ‘Cause it’s on your mind everyday. You get up, you think, “OK. I have MS — I can’t walk, I can’t stand.” But I can do things. I’ve got a great mind yet. And my vision — a lot of times, MS affects your mind, your vision and your speech. Which I don’t have those. So I’m blessed in that respect.
MS is very complicated. It’s like an electric cord and part of the electrical cord, the myelin, is missing. And that sends the message from your brain down to your legs to walk. And it’s the myelin which I need repaired, and there’s no repair for that. The drugs are mostly to slow the progression. And a lot of the trials these days are for ambulatory people, people who can walk. So there’s really not a lot of studies for people like me that can’t walk or studies about replacing the myelin.
There’s a lot that people who are disabled can do on our own; we will ask if we need help. People don’t want you to see the wheelchair or the disability. We’re all just people. I have a van with a recessed ramp, and I get very frustrated when people park in those striped zone areas in parking lots, because you are not to park in those. And when businesses aren’t handicap accessible. I’m an advocate for flying accessibility. Hopefully, in two or three years, people like me will be able to fly on airplanes without having to put their wheelchairs in the cargo area.
I like to joke about things and keep my sense of humor. And I try to surround myself with positive people. So every day is not easy. Every day is different. When you have a disease like this, you have to stay positive. And mentally, I went to a counselor — my husband Randal and I went to a counselor years ago. And I’m always in favor of counseling. I think everyone could use counseling at some point — someone to talk to, to vent. You need a good doctor that you like. I have a caregiver, which relaxes Randal a little bit, gives him more time. Then he doesn’t have to take care of me. You just have to have a positive attitude, be patient with one another.
You have to readjust your standards, change your perspectives on life. I used to be a very particular person. Not now. You have to depend on others. That’s what’s hard. Depending on others so much for certain things. I try to do as much as I can; I will ask when I need help. They have a word, “ableism” — it’s discrimination against handicapped people. And people are discriminated against: If they’re disabled, others feel they’re not able to do things. And they’re not, certain things, but certain things, they can do. And they excel at other things.
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