One hot summer day, I turned on the TV and saw an interview with several parathletes. They were all teenagers and amputees of one kind or another. One of them made reference to the “I” word. Understandably, the interviewer wanted to know what he meant. I didn’t need to ask because I knew exactly what he meant. He was talking about the word inspiration.
I don’t like being an inspiration any more than those young athletes did. They can feel the condescension just as I can. I’m often called brave. It’s usually placed someplace near the dreaded inspiration. My own definition of bravery is that it usually means doing something you don’t have to for someone else — usually a stranger. For example, it would be brave to run into a burning house to save someone you don’t know. What I do is what I have to in order to stay alive. My living with Multiple Sclerosis does not make me brave or special.
Those athletes didn’t like the idea of people watching them and assuming that everything they did was only special because of their disabilities. I saw a story on the news once about a woman with MS who was making and selling her own napkins. This was seen as extraordinary. (What a great example to us all! What an inspiration!) This woman said that the MS was really a blessing in disguise because it helped her get in touch with her creative side. Well, some of us were pretty creative before we got MS. I don’t have much sympathy for this woman or people like her. I consider them in collusion with the healthy. They allow themselves to be used to comfort those who really don’t need any comfort.
Most people would prefer not to have to look at, or be aware of at all, people with disabilities. But if they have to, they want to break into applause as someone manages to cross a room without falling down. They want to remain in a superior position, and most importantly, they want to believe that it’s not that bad.
It’s that bad. As bad as you think it is, it is actually much worse. I would like to walk to the bookstore that is six blocks away from my house — it’s not going to happen. I would like to go somewhere without making sure I know exactly where the bathroom is in case my bladder acts up. I would like to be able to drive a car. Or watch a subtitled movie without being immediately in front of the screen. I would like to be able to cook a meal without falling down with exhaustion. I would like to walk my eight-pound dog without being pulled over. (Okay, I do have to blame the dog a little bit). There are a lot of things I’d like to do without falling down. I was never athletic, but at least I could get places if I needed to. I never wanted to run; I just want to walk without a cane or anything else. I fall down a lot.
MS has not improved my life. I wrote poetry before, and I write poetry now. My viewpoint may have changed, but that’s neither good nor bad — it happens no matter what. I call this wild applause at the sight of a disabled person doing something normal: The Happy Cripple Show. It’s a way of placating the terrified masses of people who, more than anything else, are afraid that disability might happen to them.
When I was diagnosed with MS, I immediately lit upon one of its nicknames: The Crippler of Young Adults. This is not a pleasant thing for a 20-year-old in the hospital to be thinking about. I had no idea what the course of the disease would be so chose to live my life exactly how I’d planned it. I finished my degree, I went on for my masters, and then my PhD. I’ve heard of some people just stopping as soon as they hear their diagnosis. They make me almost as mad as the healthy audience. There’s never any way of knowing what’s going to happen.
I went to Europe by myself. I needed to. I staggered through Europe with my cane, resting whenever I needed to – which was a lot. Slowly and/or blurrily, I got to see London, the canals of Venice, the spires of Prague, The Spanish Riding School in Vienna — I got to see it all.
After spending a few days in Amsterdam with a friend, I went to Brussels to catch the Eurostar. The line was incredibly long. I was already worn out despite my insistence to myself that everything was fine. When I’d first arrived in Amsterdam, one of the first things my friend, David, did was to point at my feet and say, “you need new shoes.” y shoes were in pretty bad shape. They were already pretty worn out, and I thought I could just finish them off in Europe. Bad idea. The floor was very slick; it was your basic tile floor. My worn tread, lack of balance, and general fatigue just didn’t do very well on that floor — and the train was nowhere in sight. (I did buy some nice new shoes––Bruno Magli!–– in London, once I got there.)
I staggered along, leaning on my cane, hoping it wouldn’t break beneath my weight, and trying to pretend I was just fine. Suddenly, there was a voice behind me. I turned. It was a young man with a wheelchair. He asked if I needed help. I sank into the chair and thanked him profusely. This was the first time I’d willingly sat in a wheelchair. I had heard that when a person with MS sits down in a wheelchair, they usually don’t get up again. I knew I was taking it too literally, but still, wheelchairs scared the hell out of me. In many ways, they still do. But I’ve stopped dragging myself through airport concourses and the like. If I think I’m going to need a wheelchair, I arrange for one. What’s interesting about my Eurostar experience is that it would never happen in the States. No one would just show up out of nowhere with a wheelchair. I could be crawling on all fours, and no one would do a thing. The attitude in the States is that, if you’re disabled, you should just stay home and not inflict the sight of your poor health on other people. Yes, that’s very harsh, but it has been my experience.
The Eurostar people even made sure there was a wheelchair waiting for me in London. This all happened more than 10 years ago and I’m still amazed by the difference. In airports, it’s always a toss up whether the wheelchair is actually going to show up at the gate and get me where I need to go. Far and away the worst airport for this is Minneapolis-St. Paul. (Of course, I lived there so was at that airport more than at others – I’m probably being too hard on the Twin Cities). It was best just to assume that no one was going to show up. Instead, my ex-husband would run around looking for an unattended wheelchair. He’d grab it, bring it back to me, and we’d be off.
The last time the promised wheelchair failed to arrive, I was in Chicago and traveling alone. I had a pretty tight connection to make. If one of the flight attendants hadn’t been concerned and stuck around to make sure I got where I needed to be, I would’ve been stranded. I can’t see well enough to see the gate information on the video screens – I couldn’t even tell where I needed to go. The flight attendant stayed with me until someone with a wheelchair came by. She flagged him down and basically insisted he take me to my gate.
It’s something I’ve gotten used to. I’ve also gotten used to people glancing at me then glancing away very quickly. People are looking but don’t want me to know. At least, they have the good grace to be embarrassed. I think people are very afraid of the disabled. I’m a relatively young woman who walks with a cane and sometimes needs a wheelchair. This really seems to bother people. I wonder if they think I’m contagious. I suspect that I’m a much too solid reminder of their own mortality.
Another problem is that I don’t look disabled enough. Most people just don’t understand the wide range of things the term “disability” covers. People usually think of blindness as being in total darkness. In fact, being blind means all kinds of things. I am legally blind but am certainly not in total darkness. I can see most things if given enough time. I can’t drive because it doesn’t provide me with enough leisure to really look at things. I can’t watch subtitled movies for the same reason. Walking with a cane is not really seen as disabled. Needing a wheelchair over all but short distances is not really understood. Either you’re in the wheelchair or you’re not: that’s the attitude. I’ve had gate attendants send the wheelchair away because, if I can make it from the plane to the gate, then I can obviously make it down the concourse. That’s my guess about what they’re thinking. No one ever looks me in the eye and says what’s on their minds. The scary disabled lady might get them.
While I was living my life as I had wanted and planned, I was having intermittent symptoms of MS. The summer was always a problem. Heat aggravates MS. The initial numbness I’d felt originally had been treated with prednisone. It went away and I was just fine. It returned one summer. Again, it was treated with prednisone which worked. My eyesight started to act up when I was in Oregon working on my masters degree. My vision would blur whenever I was overheated — usually from exertion. Even a very small amount of physical activity would make my vision blur. I saw an eye doctor who said that the changes in my vision were my imagination but that I did need glasses. Despite my thinking the guy was an idiot, I went ahead and filled the prescription, getting my first pair of glasses. I’d told him about being diagnosed with MS; I guess he chose to ignore it. I would stick to neurologists from then on. Not that that always worked.
I went to see a neurologist recommended by Student Health when I was working on my PhD. The numbness was back, and my vision was continuing to blur. She prescribed prednisone, but she prescribed an amount much larger than I was used to. I began sobbing. It wasn’t an overreaction to something — I was just crying and I couldn’t stop. That stuff was really messing with my brain. I found another neurologist. This one was recommended by the general practitioner I’d seen in high school. She was good, and I’m still seeing her today.
The first thing she did was run some tests to make sure that I really had MS. My initial MRI hadn’t shown anything. She said some things mimic it; she set out to eliminate those. I also had another MRI. I insisted on Valium. No one argued. No way was I climbing into that coffin again without drugs. This time, the MS lesions were there for all to see.
One doctor told me that “traditional medicine had nothing to offer me.” That was pretty much the conclusion I’d already reached. It’s unusual for an M.D. to say something like that. Most of them cling to traditional science. I began exploring alternative treatments. I took all sorts of supplements. I had acupuncture — which I should go back to. I did apitherapy also known as bee venom therapy.
My ex-husband ended up being really good at it. He got to the point where he could grab those bees in the tweezers and sting me 18 to 20 times in about 10 minutes. The faster you get it done, the better. I got used to the pain. Although the stings you’re supposed to do on the back of the neck proved too painful for me. I had to stop those.
My willingness to be stung should tell you a lot about the disease. I had gotten to the point that I would do anything.
I eventually went to see some high-level ophthalmologists recommended by my neurologist. They gave me just about every eye test you can think of and told me that my eyesight was 2500/2000 or something unheard-of like that. I have nystagmus– irregular movements of the eye. My eyes bounce all over the place. They thought the best course for me was to control the nystagmus by injecting Botox into the muscles behind my eyes. This would completely freeze my eyes. I would be unable to look side to side or anywhere except by moving my head. It might also prevent me from opening my eyes — I’d have to use something to keep the lid open. I went home and thought about it after consulting my ex-husband and my friends via e-mail. Everyone’s reaction was strongly negative — horrified, in fact. I was glad. It made the decision easier. The thought of being unable to move my eyes at all was one that I just couldn’t take. I was fairly sure that I’d be trading one problem for another or just making things worse. I said no to the Botox.
Before that, I was on interferon for a while. I don’t think it helped, but it did give me all sorts of nasty side effects. When I went to Europe, I used that as an excuse to stop taking the drug. The drug has to be refrigerated; that would’ve been a problem since I definitely wasn’t staying in one place. I didn’t miss it.
At one point, I tried another interferon. One of the possible side effects was suicide ideation. I was used to that, but this stuff made me feel homicidal. My ex-husband is lucky he survived it. Fortunately, that kind of side effect is taken very seriously. I was taken off the drug immediately.
I was on Copaxone for years. It didn’t seem to have any side effects. I had to give myself an injection every day which I thought I’d hate. It wasn’t that bad. Regardless, I’m happy that I’m now taking Gilenya which is a pill once a day. No more shots! I’m not sure how it’s working yet, but I remain hopeful. I’m still doing bee venom therapy although I’m not being stung anymore. I found a place that sells bee venom pellets. I take those instead. I’ve tried to stop taking the bee venom but felt it almost immediately. It really seems to help my bladder function. Even if that’s all it does, it’s worth it. I really don’t want to be in a diaper. In fact, I’ll do pretty much anything to avoid it.
I’m supposed to be grateful that it’s not worse. I’m not. I’m supposed to be sitting here with a sad smile on my face thanking some higher power or another that I’m not in a wheelchair. Or in a nursing home. Or dead. I guess the fact that I’d really like to be healthy makes me a whiner. I see no reason to be grateful for anything. MS is a progressive disease. That means it gets worse. I may not be in a wheelchair or dead yet, but it could happen — it will probably happen. Maybe even sometime soon. The course of MS is impossible to predict and different for everyone.
My symptoms are multiple just as the name of the disease promises. I’ve had it for more than 30 years now. I’m still ambulatory though barely. My limit is less than a block. I still live by myself; I don’t need anyone to take care of me. I’m legally blind, but that’s a long way from totally blind. The Happy Cripple Show enacts itself every day and I imagine a line of wheelchair-bound dancers waving canes and crutches in unison. Why not? I do what I have to do.