Dream for a Dollar

Travis is 30 years old, graduated with a degree in psychology from Boston University in 2002, and has worked at a publishing company for the past five years. When he’s not working, Travis’s passion is writing. He’s written a science-fiction trilogy and recently completed a work of fantasy as well. Being published is another one of Travis’s dreams. Travis currently lives in northern Massachusetts.

Ever Victorious in Spirit

I was diagnosed with muscular dystrophy in 1991, at the age of twelve. To put it simply, this disease is a gradual deterioration of muscle. Due to an anomaly in my genetic code, my body lacks the protein that builds and sustains muscle. At the time, the diagnosis simply gave a name to everything I’d been experiencing: the difficulty running, the strange way I walked, the fatigue that overcame me so easily. Before the diagnosis I couldn’t have explained it, it was just the way my body worked—or didn’t. My mother had thought it was laziness, but one day I suddenly fell to the ground as I stood talking to her. She realized then that something was wrong.

Of course, receiving this diagnosis is one of those things that change everything. At the age of twelve I could not fully comprehend this and at the time it was just the reason for the way I knew myself to be. I think its effect on others was more notable to me, as if I had died but was there to witness the mourning. I hadn’t changed, I felt the same, but I changed in everyone else’s eyes.

The night after returning from the hospital to receive my diagnosis, as my mother tucked me in, I tried to voice that thought. “I’m not your perfect little boy anymore.”

My mother assured me with tenderness that this was not true. Many years later I learned that she had cried herself to sleep that night. I slept a normal boy, but one whose destiny was revealed quite cruelly.

What would follow in the years to come I liken to a civil war between the disease and my body. Certain activities would become increasingly difficult over time, like walking. Even as a child my back would start to hurt and I would tire after too much walking; the odd way I walked we would later learn was my body’s way of compensating for weakness and poor balance. Time went by and walking got harder, to the point where it felt my legs were wrapped with iron and it seemed that the hallways in my school elongated before me like a camera trick. I fell more and more often because my legs would just give out from the strain. This was terrifying because I couldn’t predict it and had no control, it was like suddenly a switch was flicked that turned my legs off and down I would go. Unfailingly, I would bang down on one knee and lie on the floor in pain, waiting ashamed for some teacher to pick me up. Just before I finally started using a motorized cart I was literally clinging to the lockers for support as I painstakingly worked my way down the hall.

Every time something becomes too difficult, I am forced to withdraw from the battle, to give in to the disease’s progression, to pull back and lose ground that will never again be regained.

I remember the last time I walked, before I lost that battle and would drive everywhere in a wheelchair. I remember the last time I stood up, showing some friends that I still could. I remember the last time I could get in and out of a shower myself, until, even though I was sitting the whole time, I had to give up that battle as well. I lost the battle of being able to get on and off the toilet. And I remember the last time I could sit up in bed, or perform the simple task of putting on socks and shirts. All those battles lost, all that ground given up. The ever-victories disease moves onward.

At the same time, in all these cases, there is an almost shameful relief in giving up. It was hard for me to imagine that a time would come when someone would have to join me in every shower, that I’d need someone’s help every time I had to go to the bathroom, that I wouldn’t get in or out of bed until someone put me in or took me out. So I resisted, I denied, I fought that battle tooth and nail, I gave every ounce of effort. Until that time that I could no longer ignore: it’s just too hard, too dangerous to continue. What a relief it is then to just give up, to let someone or something else take that burden from me.

Life becomes easier for a time in those moments. When I got my first wheelchair, it was indescribable relief. Finally I could go as far and as long as I needed or wanted without exhaustion. Options that had closed to me suddenly opened wide, like visiting museums, wandering through a mall, or sightseeing at tourist destinations.

When I could no longer stand in the shower, I literally went about a month without washing while I awaited a shower chair. What a relief when it finally came—for me and everyone around me—and finally I could clean myself without fear of falling in the shower and cracking my head open.

My process of sitting up in bed grew longer and longer for years. At first I could just use the covers to pull myself up. Later, I needed to lever myself up on elbows and use my arms and hands to walk myself up to a sitting position. The steps grew more and more elaborate, always compensating for a greater weakness, until that day when I simply could not sit up. I remember the day—the last day I sat up in bed. Our kitchen was being remodeled and the carpenters were in early. Frustrated and ashamed with defeat, I had to call out for one of them to come in and sit me up. Only then did I finally accept that I would need a hospital bed, with a head that rises up. What an intense relief to be able to continue doing so independently. Eventually I couldn’t even sit up when assisted and I gave in to someone getting me in and out of bed. Not only was it a huge relief to just give in and ask for someone’s help, but it saved me so much struggle and so much time. Another defeat, yes, but a relief as well.

Most people never have to worry about what happens when they have to use the toilet, and it may seem indecent to discuss it, but that’s in part because it’s taken for granted. When even getting onto a toilet is a major struggle, and you fear you might fall or get stuck, having to go to the bathroom can approach the traumatic. Before I had a commode at work, I’d have to struggle to make it through the day, making it hard to focus on anything. I did eventually get one for work, but eventually even that was too hard to use. In the height of desperation, I was in my boss’s office asking if he would potentially, maybe, possibly, if it’s not too much to ask, help me sit on the toilet. You can actually be too desperate to be humiliated. When I finally gave up that fight, even though I’d henceforth have to coordinate every bathroom trip with someone who could help, it was indescribable relief—in more ways than one. I now have someone at work to help me as well, and it makes working possible. I am extremely thankful for this.

Some things, while they represent my disability, end up being the biggest gifts of ability. One of the only weapons I have against the disease is the ability to adapt. Adaptability goes hand-in-hand with disability. Technology today is amazing—and I believe we could do so much more if pressed. I shudder with horror to think of the days when there were no options—someone like me probably didn’t survive, and if they did then they never left the house. What might the future hold? I fantasize about the days when a single robot can go everywhere with me and help with all my needs, no fear of being helpless. I can dream, but the options we do have today are nonetheless remarkable.

When I reached my teens, being pushed around in a wheelchair started to become a huge lack of freedom. My first motorized wheelchair was one of these fantastic gifts of ability. Now I could chose exactly where I went. The problem with any motorized wheelchair, however, is that they are very heavy and they don’t fit in any normal car. Again, that lack of freedom rears its ugly head. A van that could carry me within my chair became the next and ultimate freedom, and although I could not drive the first van I had, it again opened new options for me. Again I could easily go places I had been unable to before, so long as someone drove me there.

I couldn’t even believe that there existed the option to drive my own van, and this may be why I was late to start the process the first time. Even a van that can carry my wheelchair isn’t much help when everyone else is working and I’m home all day. On weekends, often those who could drive me had their own plans, and couldn’t chauffeur me at my desire. My own van, adapted so that I could pull into the driver’s seat and drive it with hand controls, was certainly the end-all of ultimate freedom. There is a program in Massachusetts, run by the state Rehabilitation Commission, that will fund the conversion of a van for the use of a disabled person, provided they buy the van itself and use it to become and remain employed. For someone like me, the possibility is akin to being offered a cure. Maybe not a cure to the disease itself, but a cure to the confinement it imposes.

I am compelled to add that a cure for the disease is something I pray for, at times with an intensity that would amaze the most religious. A cure would be a miracle. I can’t describe the feelings I have when I think of this. Maybe you’ve felt it when you’ve had a dream you so desperately wanted realized—one that could happen—but knowing and despairing that it’s still only a dream. It’s a dream you don’t want to wake from. There’s a scene in Harry Potter where he discovers the Mirror of Erised: within it you see your heart’s greatest desire. I know that if I could sit before it, I would see myself standing.

With an adapted van, hand controls make it very easy to drive. I can sense a time will come when I might not even be able to get a fork to my mouth, or blow my own nose, or any number of ridiculous little things one never imagines they’ll need help with. But I tell myself, as long as I can still drive…as long as I can still drive. There is a fundamental and pervasive freedom inherent in the ability to drive, and I fear that once I lose that there is not much left to lose.

I am now eligible for a new conversion; every seven years one is allowed to go through the program again so that they can keep driving. The controls I use now are getting more difficult. They include a small wheel for steering and a lever for gas and brake. As my arms get weaker, moving these controls gets harder, and driving becomes more strenuous and dangerous. A new van will be equipped with joysticks. Whereas my current controls require arm strength, joysticks require only the fine motor control of my fingers, which are still strong. As I write this, I am home from work because my current van is in the shop. The van is wearing down much as I am. It’s time for a new van, for new controls, for a much-extended lease on freedom. I was fortunate to have inheritance to pay for my first van—perhaps my late grandmother’s greatest legacy to my life, since I never really knew her. This time it’s not so easy, but the van is greatly needed.

The battle between me and the disease is ever waged, and I know eventually I will lose the fight. It’s a fight that everyone must lose at some point, just at different times in different ways. I’m no different in that respect. And yet, this is a disease that invites one to live in the moment. If I dwell too long on the past I see all the things I can no longer do, and I’m amazed at how much I’ve lost. If I dwell too long on the future, I see all the things I’ve yet to lose and that only leads to fear. Right now I’m used to the way things are, I’ve adapted; I’ll deal with the next battle when it comes. This is a disease of growing physical weakness that leads to the growth of mental strength. Once you’ve had so many crises and faced so many struggles you decide you have the strength to face whatever comes next.

There’s another weapon I have against this disease, one that it can never defeat, and one that reaches beyond me and anything that could happen to me. That’s hope. Hope is a power that should never be underestimated. It need not be directed at any specific thing; it is a force that can suffuse one’s life and outlook. Optimism, to me, is the general and preemptive application of hope. So many things in life can go wrong, so many things make us struggle, so it is upon us to focus on everything in life that goes right, and the things that ease our suffering. I hope that one day there is a cure so that all this can end. If not for me, than for those who live to the future I dream about.

While my story may have many wrongs, for every wrong there is a right. Ultimately, the question everyone must answer is how we see the life we’ve been given and how we live the time we have.

I see a life that is ever victorious in spirit.

I want to live that life to the fullest as long as I can.

I want to stay on the road for as far as the road will take me.