Letter to the Editor: Living with Muscular Dystrophy

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Dear Editor:
I would like to share this with our firefighters that help support MD kids. This is a speech from a young man in Olathe, Kans. His name is Kylen Wilder. He was diagnosed with MD at the age of 3; he is now 22. He gave this speech in front of many Kansas firefighters and had a standing ovation.
He is the son of Casey Wilder and Kendra Davis of Olathe, Kans., and the grandson of Shirley Sinclair of Rangely, Colo.
“I know some of you may not know what goes on behind the scenes in my life and the lives of other people afflicted with Muscular Dystrophy. There are things that people are afraid to talk about because they are somewhat harsh. I would like to take this opportunity to speak to you raw and from the heart. I won’t speak to you from the point of view of someone who raises money for MDA, but as someone who experiences some of the challenges that wonderful people like Daryl want to eliminate from the lives of thousands. Now, I can tell you about how muscular dystrophy kills, and has killed too many people that cannot be here today. I am sure you already know that, but the things we deal with day in and day out are really important as well.
I would like to explain some of the challenges I have faced for two reasons. One, to show you what you may take for granted, the little things. Two, I want you to see that though I am in this condition, there are people who are much worse off. Some of the people I have seen deteriorate just break my heart when they lose the ability to do something. It’s tough to see and even tougher, I imagine, to deal with. While I explain the problems, I want you to imagine just how bad it could be. Also, imagine my problems amplified, because I am truly lucky to be in the condition I am in and this speech is for all those that suffer.
First of all, the daily struggles. Go through your morning routine in your mind. What are you doing? Getting dressed, eating breakfast, showering, shaving, brushing your teeth. Menial stuff, right? Now imagine being unable to do any of those things on your own. I can’t get out of bed alone. If I had to do it alone I would be stuck for an undetermined amount of time. I can’t get my clothes on, in fact getting dressed takes a good five-10 minutes, twice as long for some. Next, I can’t just stand up from bed and start the day. I have to be hooked up to a lift that slowly lifts me. My stepdad has to guide me to a wheelchair and lower me down. If there is something wrong with my positioning, I have to do it over again. Once I am in the chair, I am stuck that way, so it has to be done right.
I want to eat breakfast now. I slowly roll out of my room and go to the kitchen. I am thinking about what I want for breakfast. Normally, someone could just pour a bowl of cereal. I have to find your caretaker and explain to them what I want. They fix it for me, while I sit at the table waiting for it like a toddler. I can’t really help with anything. I ask for a drink and they do that for me as well. Then I have to have a straw put in my cup because my arm is too weak to lift a small cylinder of plastic. When I eat, I have to lean forward so that my arms can rest on the edge of the table, giving me leverage to get my arms up to my mouth. Once I am done, I leave my utensil and plate, whatever it is, on the table. It’s as if I am saying, ‘I am done, now clean this up,’ to my parents. It sucks to make them do everything.
I am able to give them a break after breakfast, but sometimes it’s cut short by me having to use the bathroom. The lift I use to get out of bed is put in the bathroom and I am transferred slowly to the toilet. My parents have to help me remove my pants so that I can go. Now, before I continue, let me explain something. If my parents are not home or close to home and I have to go, I am probably screwed. A few times I have not made it to the bathroom in the last few years. I won’t go into details but you may be able to imagine just how unpleasant that is for me and my step-dad, who has to clean me up. I am able to go to the bathroom on my own only because I still have some balancing ability in my upper body. Many have to use catheters and bed pans to use the bathroom. I am lucky in that respect. Once I am finished, I yell for a parent like a small child who doesn’t know what to do next. They come in and have to wipe me, it’s a small thing to normal people. It’s basically second nature, but I rely on others to clean me after I go, like an infant. It’s embarrassing and pathetic in my mind. I should be able to do that just fine! I used to get my own pants off and everything, but recently I have declined.
Having a social life can be a bit more challenging as well. From the opposite sex, to hanging out with friends, to going out to eat and a movie. Girls are a troubling subject for me, as many would not want to date or marry a man in a wheelchair. A woman wants to be taken care of, not have to take care of the man. Some women find the wheelchair unnerving, because they do not understand why I have to be that way. I can only invite friends to my house, I can’t go over to theirs and get away from home. I can’t go anywhere I want, even it if is just to run an errand. My parents have to drive me around.
I get to a place where I am meeting friends and I have to act casual as I slowly get lowered to the sidewalk. When I eat at restaurants, a lot of times I can’t lean forward far enough to prop my arms up. So I have to hold my fork in my right hand, and grab my wrist with my left hand. I have to use my left hand to push my right hand to my mouth. It’s way too complicated, more so than it should be. There is nearly nothing that I don’t have to do differently.
I would now like to talk to you about some of the heartbreak that I have experienced. When I was 6, I started going to camp. I felt normal, not odd or different. Everyone had problems like me, I could learn how to cope and accept things as they were. Camp saved me from becoming bitter and angry, it was a safe haven where all my stress and concerns just melted away. It was refreshing. By the end of the week, every single year until I was 17, I didn’t want to go home. I didn’t want to go back to the world where I was abnormal. It became a holiday for me. Christmas, you can go to the bottom of the list, camp is what I need. Camp became a second home for me and I met three courageous kids. Chris, Patrick, and Drew. Chris and Patrick were a package deal, you would never see them without the other. They were hilarious and got lots of attention for their antics, something I admittedly was jealous of. I wanted to be a part of their group, but this proved a bit harder than I thought. Patrick and I were the same age, with the same disease. I was walking while he was stuck in his chair. Patrick and I were rivals every year at camp, we always tried to out-do each other. Needless to say, we had moments where we did not get along in the slightest. At first, I had no idea why he had a problem with me. Soon enough, I realized that Patrick was upset with the fact that I was not nearly as bad as he was physically. That moment I understood him, I tried my best to become friends with him. On the outside, we still had the rivalry, but I think Patrick and I had more in common and had a deeper bond than either of us had realized. So we fought each other for years, in fact, until we were in our middle teens. I always tried to get in on Chris and Pat’s fun, I tried to ease my way in. Being around them make me feel strong and gave me a feeling of belonging.
Eventually this all came to a halting screech that shocked everyone that knew both of them. Chris had gotten sick and died. He was 18 years old. Still a kid. It was a tough day for me, knowing that someone I admired for so long was just gone. My whole world was darkened by a cloud of sadness and fear. Chris had the same disease as me as well, and I was only a few years younger than him. I began to fear for my own life, I felt that if he died that I could easily die as well. My family, which includes MDA, supported us all and tried to comfort us. I went to his funeral and I saw Patrick there. He was completely devastated, beyond words. His face looked tired and he had this terribly sad frown. Patrick lost his best friend, the friend that meant everything to him. I couldn’t imagine how he felt. The next camp after we lost Christ, all I could think about was Patrick. I wanted to help him, make him feel better. Show him that I really did care for him. The whole week I would look for him during all the activities, and there was always a huge piece of him missing. Chris, who was practically glued to Patrick’s side, was no longer there. There was a loneliness in his eyes I could not even begin to understand. The end of the week came and I wished the best for Patrick. A year after Christ died, Patrick shared his fate.
I know it was heartbreak that caused it. He lost hope. He wanted to give up and he could not handle it. Hearing about Patrick was an even bigger shock, it was so soon after Chris, it was unbelievable. Now I was really scared. My school grades plummeted and I gave up on so much. Every aspect of my life suffered, I was angry, fearful, bitter, and confused. As time passed things changed and I learned to cope with them being gone. I knew they were together again running and playing like they were never able to before. I knew Patrick was happy to be back with Chris, he wasn’t lonely anymore.
Camp was never the same after this, it’s like half the life in camp was just sucked dry and we were lost without their presence. Time moved on and I hoped I was done losing the ones I love. Until last year. Drew was a kid that began going to camp shortly after I did. We instantly had a connection and bod and he soon became my closest camp friend. Drew taught me so may things. He taught me to never give up, to follow my dreams, and to not let the hard times get me down. Drew was the most positive person I had ever met. We grew up together, year after year, at camp, and he was one of the people was most excited to see every year.
Drew taught me how to play poker in a few days, getting me ready for the poker tournament that we had a camp. I had a great teacher, because at the end of the tournment, the final two players were Drew and I, I was so happy to be up there with Drew. He beat me, of course, but he was the master I was the apprentice. I was content with it. I did not get to see Drew as much as I would have liked, but the moments I did share with him are unforgettable and precious. Eventually, we got to old to go to camp and I began to see him even less. Drew went off to college at KU, which was one of his many loves. Drew accomplished something I could not imagine, as he graduated with a degree in four years.
Five months after he graduated, I was sitting at home just doing what I normally do when my phone rang. I answered it and heard a sad friend’s voice, I knew something was wrong. I couldn’t figure out what it was. I concernedly asked her what was wrong, and she broke the news to me that Drew passed away. I didn’t believe it at first, Drew was one of the liveliest people I knew, he wouldn’t get taken down at such a young age. Then, it sank in and I broke down. It happened again, I thought it was over, but another loved one was taken from me. This one hit me hardest of all. I was going to be there for Drew, pay by respects, so I decided to go to his viewing and funeral. There was a long line of people waiting to enter the viewing room, showing just how many people loved Drew. While my mother waited in line for both of us, thoughts raced through my head. I imagined seeing him over and over and I began to cry silently. I didn’t want to make a scene. I didn’t want to think about it, but I had to. It was the only way I could prepare myself.
I cautiously entered the room and just seeing his casket in the corner of my eye sent a bolt of pain through my body. I felt like I couldn’t breathe and I gasped loudly, sobbing hard. I was able to gain composure of myself until I approached him. I was what he was wearing and it made me chuckle, it was the epitome of Drew captured perfectly. He was wearing all of his KU gear. I had a conversation with him, expecting one of his signature smart ass comments, and after the viewing when home. I went to bed that night dreading the funeral the next day. I cried on the way to the chapel and through the whole service. We followed everyone to the burial site and we all said our goodbyes. Before Drew was lowered, the KU fight song was played by a group. It was a sad, yet uplifting moment.
Imagine three of your closest friends, imagine them not making it to their next birthday. It’s a horrible feeling that breaks the strongest of people down to their knees. I have suffered my own health problems, which were very scary. After Chris and Patrick died, life when on, but one day in September 2008 I felt my heart beating wrong, something wasn’t right. The first thought through my head was that I was dying. It was my turn, I knew it would eventually catch up to me.
I went to the doctor and after months of appointments and a battery of tests, a cardiologist decided I needed to have a pacemaker implanted. It scared me, and I hoped it would be OK and I wouldn’t have to get one. The day of the surgery came and I was insanely nervous. I kept expecting them to say, oh, never mind, your heart is fine, but I knew it was just wishful thinking. The surgery happened and there was a chunk of metal in the left side of my chest. Since then, I have had very few problems, but there is always that fear in the back of my mind. I keep expecting my pacemaker to shock me, but it has yet to happen, thankfully.
My point of all this is so you know what you are fighting for. There are thousands of people just like the ones I have talked about. You are a huge part of fighting these diseases and you should know just how much I, and everyone else involved, appreciate your efforts. Thank you.’
Submitted by Shirley Sinclair