Using Cheat Codes to Live My Best Life With Becker Muscular Dystrophy

Up, up, down, down, left, right, left, right, B, A, Start.

Cheat codes were a vital part of unlocking certain hidden aspects of old-school video games. Entering these sequences in a specific order on the game controller would unlock otherwise unattainable features. I would use the controller button chain to discover secret paths, and use the codes to unlock special characters or modify the game to make it easier to pass a certain level with assistance.

Much like the modifications needed to pass through the game successfully, I’ve relied on my own set of cheat codes in life. To progress through my side-scrolling adventure with Becker muscular dystrophy, I needed to develop new ways of doing the tasks I found more challenging as time went on.

In the beginning, I didn’t have trouble with stairs. I could run reasonably well, though only short distances, and I could bend without many issues. Fast-forward a handful of years, and I am increasingly having difficulty with all of these tasks. Stairs are laborious and leave me wobbly. Running is essentially a non-starter, and bending is becoming more challenging. 

I found that to progress with grace, I would need to develop modifications for the aspects of daily life that were becoming more physically taxing. For example, getting up off the floor, a necessity with falling, was relatively easy for me until my disease progressed further.

Because Becker affects some of my proximal muscles, I began to use a common method for getting up called the Gower sign. The sign is found not only in Becker, but also in other muscular dystrophies as well. Even with this maneuver, I’ve made an adaptation. While the traditional maneuver is to walk yourself up into a standing position using your hands, I prefer to get into a bent position and then seek a higher surface to push off.

Another tool that helps me push off is a set of grippy shoes. I typically try to find shoes with many teeth on the bottom. The deeper the lug on the sole, the better. Over time, I transitioned to trail-running shoes for their light weight, but also because I enjoy hiking. The trail shoes help keep my traction on the ground and provide a way for me to push off more effectively.

But what if there isn’t a higher surface for me to push off using both my arms and legs? I sometimes push off any surface to pull myself upright using my arms. I’ve been on hiking trails and lost my balance, and used a tree to get back up. It’s not always pretty, but life with a disability can sometimes involve unpleasantries.

In the past, I tended to blame my muscle weakness on bad knees. Those stories weren’t true, of course, but it was easier than trying to explain my genetic fault. When I was in middle school, I dislocated one of my knees during gym class, and I used it as a scapegoat from that point on to support my tales of defective knees. For a while, people believed me.

Now that I’m older, I’m learning how to accept myself for what I am, and not what I’m expected to be. Normal is a subjective term, and I’m far from ordinary, regardless of a genetic flaw. I’m educating myself about how to use my muscular dystrophy as a way to connect with people and demonstrate that not all disabilities are apparent. There will come a time when my muscle weakness will no longer be concealable, but I choose to live my life as best I can and worry about tomorrow another day.

For now, I will continue to convince myself that the adaptations I create are only a cheat code helping me to reach the next level. It’s OK to do things in an unconventional way. It’s perfectly acceptable to change my way of thinking and do what’s best for me and my body. But it starts with me.

I not only have to learn to accept myself as I am, but also to put my pride aside on occasion and let others step in to help. Too many times I have tried to do something on my own only to wind up feeling more sheepish than if I had just asked for help to begin with. As they say in The Legend of Zelda, “It’s dangerous to go alone! Take this.”

After all, there’s nothing wrong with asking for help.

***

Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.