Facing a New Series of Physical Transitions
Transitions are a part of life. We go through puberty as teenagers and our bodies change. We move out of our parents’ place to go to college or start a new job. We get older, some of us have kids, and our perspectives change.
When living with Duchenne muscular dystrophy, we must deal with other transitions as we get weaker. It’s hard, but I’ve prevailed by counting my blessings, being open with my friends and families, and embracing other transitions that are more positive.
For those who don’t know, Duchenne is a progressive muscle-weakening condition, meaning that we continue to lose muscle cells over time and with exertion. The disease doesn’t stop or decide to take a break. Slowly but surely, some of the actions I used to be able to do, like stepping into the shower, standing for longer than 3 minutes, walking up an incline, getting dressed, and swimming, become either no longer safe or extremely difficult for me to do on my own.
I just got back from vacation to Hawaii where some of my college friends tagged along. Two years ago, when I graduated from the University of Southern California, I didn’t need help showering, getting dressed, putting my night splints on, or even getting off of the toilet. Now, I need help with it all. This trip has reminded me of the progressive nature of my disease.
I’ve hit another inflection point in my battle with Duchenne. At first, it was being unable to play sports with my friends. Next, it was needing to use a scooter to get around. Then, I couldn’t get off of the ground on my own and a couple of years later I would falter trying to get out of a chair. Now, I have to sleep with a BiPAP machine. All of these things seem small at face value but they add up over time. The latest difficulties are forcing me to reflect.
Each new front of the war against Duchenne is scary, humbling, and frustrating at the same time. It hurts me that I have to be reminded every so often of its omnipresence. I fear knowing where all of this goes. As much as I want it not to be so, my physical life will continue to change until I can’t use any of my muscles. I try to see a future with a wife, child, my own family, my career … but each transition shrouds that life.
Then, I snap back to reality: acceptance. I may kick and scream and tell myself I can do what my muscles physically can’t, but it doesn’t change the reality I live in. It happens to be a reality with plenty of good things — incredible parents, a developing career, and people who love me (still searching for that soulmate, but when I find the right person, trust me, you’ll know). I could be starving, I could be homeless, I could be so many other things than what I am right now. I’ve already lived a full life and plan on continuing it whether or not I can (literally) put on my own pants.
Introspection has told me I internalize a lot of things and don’t ask for help for fear of being a burden. But I have to tell other people about transitions that I know are coming. I think we are wired as humans to hate admitting our faults and personal challenges, but it is required of me to break through these difficult transitions. Some of it comes out of necessity, but some of it has to come out of protecting myself for the future. Taking a tumble out of the shower could literally end my life or cause a fracture, which kills my chances of walking again, so I have to swallow my pride and call out for help. I need to communicate the aspects of my latest transition that trouble me so I can make it to the next part of the never-ending battle with Duchenne.
While I’ve had plenty of negative physical transitions, I’ve also had plenty of positive mental ones. I’m honing my reporting, writing, and editing skills in journalism. I’m improving my interpersonal skills with the more people I talk to. I’m understanding more about my faith in God. A physical transition can be paired with a mental transition, which helps me put a positive spin on the situation.
I’m expecting more unforeseen transitions to happen in the future, and while I don’t hope for them, I now have a better grasp of how to get out ahead of them and protect myself mentally and physically. Transitions are a bigger part of life for me than your average person, but like everything else, I’m not planning on letting them get in my way.
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.