Being Open-minded Is Vital When Adapting for Duchenne MD
With a progressive disease, you can't do things the way you've always done them
I face many obstacles because of my Duchenne muscular dystrophy. Some of them are large, like preparing for the day when I’m unable to bear my own weight. Some of them are small, like getting help scrubbing myself in the shower.
Although I would rather avoid these obstacles altogether, they’ve helped me learn how to adapt, physically and mentally. To maintain my best quality of life, it’s been on me to adjust by changing my environment to match the circumstances.
Successfully adapting to the progressive nature of Duchenne requires an open mind, a willingness to be uncomfortable, and an ability to find peace while juggling my medical, professional, and personal commitments.
An open mind is by far the most important attribute to have when you’re dealing with the ups and downs of Duchenne. If you keep doing the same thing over and over when your circumstances change, you’re setting yourself up for failure. Being nimble and dynamic is a prerequisite for finding success in spite of this diagnosis.
A recent change that’s been difficult for me to accept is receiving assistance every time I go to the bathroom. I’m uncomfortable having to ask friends to get close and personal with me on the toilet. But if I want to go places and enjoy time with these friends, it’s a pill I must swallow.
In this instance, I’ve had to acknowledge that I need help if I want to continue living my life. I’ve had to accept being uncomfortable. It’s taken a mental shift for me to deal with the physical progression of Duchenne. Plus, the more I become uncomfortable, the easier it is to encounter discomfort and yet survive.
I don’t always like being open-minded, but it’s necessary for growth in personal life and career. You won’t find solutions if you don’t try new things. You won’t know if you like something or someone if you don’t take a leap of faith. So, in a way, Duchenne has helped me grow — not just in how I deal with it, but in how I interact with others and creatively solve problems in my professional sphere.
Part of adapting to the ways Duchenne affects my life is finding peace amid chaos. With always needing help to use the bathroom, and with my arms becoming weaker, I’ve needed to find 24-hour care for my safety and my parents’ peace of mind.
It’s been a challenge finding the right person to assist me, convincing the state and insurance companies that I really do need help, and navigating bureaucratic red tape. That’s on top of having a full-time job and freelance projects. Then there’s preparing for a multitude of appointments with medical specialists, ranging from neurologists to endocrinologists to cardiologists.
When the obstacles seem endless, I take time to breathe and pray. Focusing on my to-do list one item at a time always helps. I realize that I can’t worry about everything all at once. Having a relaxed disposition helps me succeed at embracing new challenges.
No one wants to have Duchenne, and I guarantee that any patient I ask will agree with me. This disease, however, has forced me to leave my comfort zone so I can live well. It’s also taught me to juggle multiple tasks at once while having a laser focus on each.
None of this is easy, but the more we can open our minds to new ideas and creative ways to get around certain hurdles, the more we can start living our lives and not let Duchenne dictate how we do it.
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.