Since early childhood, we have all strived to become independent. We want to be able to do things on our own. However, to achieve independence with Duchenne muscular dystrophy, we must flip the typical definition of the word on its head.
When we think about “independence,” we often have physical autonomy in mind. Living on your own without needing assistance to function, move around, or carry out your daily routine. For many of us with Duchenne, that isn’t realistic.
We should give greater consideration to mental independence and fortitude. While full physical independence may be impossible, knowing your body and asking for help from others can be achievable.
I’ve realized what that means recently. I was speaking to a class of first-year medical students, and one of them asked me about living independently. My dad was present, and he followed up on my response by challenging the belief that independence is about doing everything on your own. He said that it’s also about asking others to do it for you. While you are still responsible for completion of the action, someone else may be carrying it out for you.
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The most successful CEOs don’t spend their time making photocopies of documents, taking phone calls, creating slide decks, or designing spreadsheets. They delegate those duties to someone else to free up their time to allow them to be leaders and visionaries. And yet we consider these people to be independent.
We can think of needing care with Duchenne in the same way. As I’ve become weaker, I’ve had to delegate tasks to others who are more physically able: my new aide, parents, friends, and co-workers. That allows me to focus on other important things such as writing, meeting people, and advocating for my disease.
Like many societal concepts of “normal,” independence can be looked at through other lenses, particularly when considering those with special needs. It’s not that I’m dependent, I’m just living out the notion of independence differently.
I once broke down on a school trip. I asked my dad, who was accompanying me, “Will I ever be truly independent?” I had made the mistake of thinking that needing others to help me meant that I would never be self-sufficient.
My dad told me that by leading others to help me with my needs, I am as independent as any other functioning adult. That’s a breakthrough perspective for all of us to understand — not just those with Duchenne.
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 Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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