I have Muscular Dystrophy. You might know it as "M.D." Or you might confuse it with "M.S." (Multiple Sclerosis) More people confuse those two with me than do people who think I'm a "McConnell" instead of an "O'Connell". Common mistake.
Up to this point in this page (that's assuming you're going linear), I haven't really hit on this much. You'd think this is a pretty important part of who I am, so it should be one of the first things mentioned. Why wasn't it? Well, I think there are a couple of reasons. First, when I do think of myself, about who I am, I tend to see the interior first, think of the things I like, the things I believe in, the inner as opposed to the outer self. So these things are naturally the first ones I write about. The second reason, I think, is something I have to be honest with myself about. I've done with this site, with this introduction about myself, what I find myself having to do again and again in my life and my dealings with people. And that is having to put effort into convincing people that there's more to me than a wheelchair, that they have to actually continue thinking after making their initial appraisal of me after first glance and letting all the cliches and preconceived notions and stereotypes kick in. I suppose the nice thing about being in control of the information flow like this is that I can do things in the right order for a change. But it's unavoidable. Sooner or later, it has to come back to this. As much as I find myself wanting to think otherwise, I have to keep trying to get past the resentment and realize that this is an important and unavoidable fact of who I am.
Fine dining with A.T., Tim and Aaron
Muscular Dystrophy. What is it? You may or may not know. There are actually different kinds of Muscular Dystrophy. But in general, M.D. is a disease that weakens the muscles. And it generally does this over time, how much time depending on the type of Dystrophy you have. When I was very young, I graduated from crawling to walking, the proud moment in any parents' lives. But then I went back to crawling. My parents eventually saw doctors about this. And when I was two-and-a-half years old, a doctor took my parents into his office and told them that their son, who seemed otherwise normal and healthy, had a disease that they may not have heard of and definitely had never given any thought to. And that their son was probably going to be dead by the time he was seven years old.
Well, I made it past seven, as you probably figured out. As I said, there are different kinds of Dystrophy. My initial diagnosis was one of the bad ones. As it turned out, my actual diagnosis was a bit elusive, causing doctors to change their minds a few times along the way, and they didn't get it right until I was fifteen, when they realized I have Emery Dreifuss Muscular Dystrophy. As Dystrophies go, believe me, this was good news. M.D. is such a terrible disease because it hits kids, kids who more often than not don't get to sit around in their 30s writing web page essays about their disease. So it turned out that the terminal part of my diagnosis was gone, which left just living with the lifestyle of continuing physical deterioration. Kind of puts complaining in the proper perspective.
With friends at A.T.'s bachelor party
My muscles (certain ones) have been slowly growing weaker throughout my life. M.D. is progressive that way. As a kid, walking was fairly easy, as was running, even...but just not as far or as fast as others. Walking became harder. Eventually I got a wheelchair for use on longer distances, like going to theme parks and such. Longer distances turned to shorter distances, and by high school I was using the chair more often. By the end of high school, my father (not any doctor, annoyingly enough) got the idea that I should start using a cane, and doing so kept me walking for a number of years after. But the distances I could travel got shorter, and the chair became more necessary. Which brings us to today, where I use the chair full time. Walking more than a few steps with a cane just isn't on the menu. Funny thing about that. I can still remember not wanting to give up that cane, not wanting to take that final step of being a wheelchair guy. But time has a way of helping you into things. Walking was becoming such a hassle I found, in comparison, I really didn't mind all that much. Another area of weakness is in my shoulders, and I can no longer, at this point in my life, lift my arms above my head. So my life of crime is probably out. And yet certain other areas are pretty much okay (well, by my standards, anyway). My hands, for example, have always seemed to do okay, which is very good news when you type at great length like I do. Was even playing piano for a while a few years back there. Give me a choice between being able to write and being able to properly spell out "Y.M.C.A." over my head when the song comes on, I'll take writing.
Near the end of the cane days
So there's muscle weakness to deal with. There are also muscle contractures. These, too, happened over time. My range of motion in different parts of my body aren't all that great. I'll never be a gymnast, that's for sure. I can't turn my neck too far in any direction. My arms don't straighten out all the way, the right one being much more pronounced in this than the left, stopping at about a ninety degree angle. And there's also the fun of scoliosis. Somewhere between junior high and high school, my back started to twist quite nicely, which also brought on a swell tilt in the pelvis. This led to spinal surgery in '84 where two metal rods were fused to my spine. Which is great, except that the rods have managed to break along the way (go figure) in a few places. But at least it stopped the progression. So I'm a bit on the twisted side. And my spine doesn't bend. And I tend to set of metal detectors.
Put all this together and what you have is a life of me slowly watching myself fall apart and giving up, one by one, things I used to be able to do. I'm going to emphasize that I'd much rather have things happen this way than lose it all at once. I can't imagine what life is like for the Christopher Reeves of the world, people who are fine and normal one day and then suddenly, in a heartbeat, lose it all and have to deal with starting life all over again. Gradual is kind. I don't mean to suggest it's all rosy and I think it's great. I just acknowledge that other people have it much worse, and I'm grateful to have some time built in to the process to get used to the changes. Sometimes I'll go a few years without really noticing any changes, since they happen so slowly. Sometimes there'll be a more rapid progression, and it's more noticeable. My final leap from cane to chair seemed to happen pretty quickly. Times like that are rather strange, when your body can't do something anymore but your mind hasn't quite caught up with that fact yet. I still find myself reaching for things, for example, that I really can't reach. I'll just instinctively try to raise one arm to get a glass off a shelf, for example, and the hand just won't reach that far. I'll then just have to use the other hand to raise the first one, and all's well, but you'd just think the brain would have caught up by now, wouldn't you? It's all about time, I suppose.
Me and Joy, New Year's Eve '97
So I use a wheelchair, and as a consequence of this, and the muscle weakness, I can't just drive any old car. I have a van, a very specialized van built with some very cool and high-tech attachments. It has a very small steering wheel that has power steering sort of taken to the next level, where any hair of a movement gets you turning (very hard to learn, I should add, and just try asking my stepfather about this sometime. He had to drive it for me once, and he'll never get in the thing again). The wheel is attached to a column, and to drive, you push forward on the whole column for gas, pull back on the whole thing for brake, in a very airplane kind of way. There's also a control box mounted to the driver door filled with buttons that do everything from turn on the radio to change gears to turn on the wipers to hit the horn. All very cool. And there's a wheelchair lift in the back of the van, too, of course. This van I only have because of a wonderful woman named Yvonne. These vans are very expensive (VERY expensive), and for that reason, I didn't even get my license until I was 24, since I had no van to learn to drive in. After my father died, I had some inheritance money to put toward a van. I was looking for one. They were all out of reach. Then my cousin Jerry found an ad for one for sale. My mother contacted the woman selling it, Yvonne. Turned out it was exactly the one I needed, and it had belonged to her son, Corey, who himself had Muscular Dystrophy, but who had died a couple of years before. His van had been in storage since, and his family was finally willing to part with it. And just at the right time. I didn't have the total amount she was asking. But Yvonne decided to sell me the van for what I did have, a major loss from her original asking price. If not for her, and this timely miracle, I don't know how long it would have been before I'd have gotten one, if ever. Not all miracles have to part seas, you know?
The van. Cool setup, huh?
Oh, and another fun consequence of my particular kind of Muscular Dystrophy is heart trouble. This came to me later on in life. In fact, really came in the middle of a trip to Reno for my friend Ken's 21st birthday. This was at a point in my life when I was drinking heavily and smoking a pack of Marlboros a day. We were in Reno, in our hotel room (after returning from a long night of no-luck gambling and free drinks), with a video camera running as we rambled on and drank more. You can see a place on this video where I'm putting my fingers to the center of my chest. This is where I'm feeling it as my heartbeat is racing out of control. Being drunk (and stupid), I just simply ignored it and went to sleep. But in the days that passed, the problem kept coming back, and getting worse, and I finally ended up in the hospital. This was the first of my heart problems. Turns out it was arrhythmia, or a problem with extra heart beats. Got on heart medicine at this point, and quit the hard liquor (just stuck to beer) and the smoking (for a while) and the caffeine.
Me, Mom and Jack
Problem number two came in October of 2001, when I started feeling lightheaded and feeling a hard pounding of my heartbeat--not fast, just hard. I almost did the same thing as before and just went to sleep, but when I realized it only seemed to be getting worse, I drove myself to the hospital and got checked in. Turns out it's a good thing I didn't go to sleep. My heart was slowing down and trying to stop. A surgery later, I had a pacemaker. Now I set off metal detectors twice. This was a pretty big deal. Almost signed the lease on the proverbial farm. But the pacemaker seems to have fixed things up nicely, or so my cardiologist keeps telling me, and now I have just the occasional symptoms to deal with. A little dizziness and the annoyance of being able to feel my heartbeat without having to take my pulse I can handle. Considering the alternative.
Chair life. It's something you'd think, after getting into my thirties, I'd have gotten used to. I wish that was the case. You don't get used to it. You never completely get used to the stares, to the often goofy things people say, to the automatic presuppositions laid on you the minute you roll into someone's view. I do what I can. I try to live my life without thinking about it, try to go about my day and do my job and buy my groceries and meet new people, all while acting like the me inside is the one that counts. But it's always there. The discomfort and fear I see in a store clerk's eyes when they realize they have to talk to me. The patronizing tones of folks who assume physical disability must go hand in hand with the mental kind. The ever-present feeling of exclusion, of being the outsider. Always being the man in the chair, not simply the man. I wish I could say I always take it all in stride and deal with the life I've been given. And hey, sometimes I do. Other times, it just grates, and I just don't have the energy to deal with it, to deal with people. I dread the grocery store and the mall more than anything in life. And I find myself feeling like it's my fault, like I'm not the After-School Special inspirational wheelchair person I should be who takes those lemons and makes lemonade. But why do I have to bear that responsibility? Don't I have enough to deal with without having to worry about the expectations of others? Resentment and self-loathing will fluctuate. Sometimes it's easier just to stay home, really. Is it asking too much to just want to be able to deal with people on an equal level, to be able to be yourself and have others see you that way? Apparently, it is. So, I either I deal with it or avoid it. Depends on the day I'm having.
Too much Martinellis, I go loco
I'm sure that there'll be more thoughts on all this in my Exposition section, if I do in fact use it as a place to get some writing done and work through some of my emotions and thoughts on life. But, in short, it's part of who I am. You're already aware of this, the second that you meet me. It's me that has to learn to accept this. All I ask from you, I suppose, is to try and look a little deeper, to consider that there's more to me than four wheels and better parking spot than yours. If you're meeting me for the first time though this web page, then I think we're already off to a pretty good start.
Me singing "You'll Never Walk Alone" with Jerry at the Labor Day Telethon (it could happen...)
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