30 Days of MD: Chasing and Redefining Independence for Myself

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by BNS Staff |

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Photo courtesy of Meredith Huml

Day 28 of 30

This is Meredith Huml’s story:

Independence has been a goal of mine for many years. I haven’t always chased after it in the healthiest manner. I need help in different ways than most people. I don’t like to make unusual help requests, or any request for help really. Requests for help often shine an incredibly bright and uncomfortable light on my differences, weaknesses, and vulnerability. And having muscular dystrophy means my needs and requests are constantly growing and changing as my body deteriorates.

Asking someone to pick up something you’ve dropped while shopping feels odd. I’m young, and sometimes the odd look I get before they oblige makes me wonder if they think I’m on some weird power trip, or faking, or just lazy. Asking a stranger for help after falling on the ground, with no one else around, can be scary. Asking for help up from the toilet, and realizing that this is your last time getting up by yourself, is humiliating and disheartening. It’s hard having to be more vulnerable, and it’s hard relying on someone else.

“Independence” has always been equated with happiness, a means to survival, a way to prove my competence, productivity, and ultimately worth. If I could be my definition of independent, if I could show people that I can do everything by myself, maybe I wouldn’t be such a source of anxiety and worry to those close to me. Maybe people wouldn’t look at me differently. Using independence as an adjective of positive characteristics, and the lack of independence as a negative, subtly suggests that those who are more dependent are less than or a burden.

Independence means something different to me now. It means having autonomy in choosing what help I receive and from whom. It means knowing when to ask for help so that I can live as independently as possible. That’s the kind of independence I’m chasing.

Muscular Dystrophy News’ 30 Days of MD campaign will publish one story per day for MD Awareness Month in September. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofMD, or read the full series.