Being Independent Within My Capabilities

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by Leah Leilani |

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I often associate independence with adulthood and coming-of-age. The liberation of a teenager learning to drive a car or a student bidding farewell to their childhood home as they are whisked off to college are just a few things that come to mind. I think of these things as if they were drawn from my own memories, but alas, they are not. They are as real to me as the taste of a meal that hasn’t yet touched my tongue. 

A lesson I’m constantly teaching myself is to allow others to do things for me. Although it has gotten easier over the years to relinquish my reins, it was much harder during the onset of my disease. Being a kid, I didn’t want to be assisted with writing or steadied as I walked down stairs. I didn’t want to lose my independence. 

I first regained some of my lost independence when I received my wheelchair. That day, nothing could remove the ever-expanding smile from my face. Adrenaline coursed through me as my newfound mobility made me feel light as air. Freely maneuvering around in my electric wheelchair had me feeling like a baby bird taking flight for the first time. I was finally free from begrudgingly depending on others to wheel me from point A to point B. I could once again keep up with the energetic children in my neighborhood. I find it funny that wheelchairs are often connected with a lack of independence because for me and most others with mobility aids, it’s the exact opposite.

It’s common knowledge that the first few years of adulthood are a 24/7 learning curve. Making mistakes and learning valuable life lessons consumes more of our time than any TikTok dance routine. I’ve witnessed my friends enter and graduate from college and work late hours at their jobs knowing that these stages of adulthood will never be a part of my reality. Nevertheless, there are still ways for me to utilize my maturity and be independent within my realm of capability

For the last 16 years, my mother has managed all things medical for me, from organizing paperwork to calling doctors. Over this last year, I’ve helped lighten her load 0.01% by taking on the role of ordering my own medication refills. I haven’t quite mastered this fine skill but I do enjoy even this small responsibility for my own medical care. There are occasions when I need my mother’s veteran experience — like when my refills are out and a phone call to the doctor is required.

“Independence” has a broader meaning in the disability community. One person with a disability may possess physical abilities the next person may be limited in, causing their experiences and levels of independence to differ. 

It is important to keep in mind that independence is not a competition and shouldn’t be compared. We need to focus on the things we can do instead of our limitations. 


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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