When my body betrays me

By: Keisha Greaves

How do you cope with a diagnosis that has no cure and slowly but surely changes your life experience?

I take it day by day, in hopes that one day there will be a treatment for this incurable disease and I can get back to the person I was once. I have Muscular Dystrophy, a muscle disease that weakens the muscle within the body over time and the body begins to shut down. The body begins to feel weaker in the arms and then from the neck all the way down to the feet. For some, it takes away the ability to walk up and down the stairs, to get dressed on their own, and to raise their arms up and down with complete function. Others start to need mobility aids, such as a cane, walker, crutch and some eventually end up needing a wheelchair. 

Prior to my diagnosis, I would go out to clubs and bars with friends, travel, drive around on my own, maybe go grab something to eat, and go to work. I miss those days. Sometimes I feel like I am grieving the person I once was. Now I have to make sure a place is wheelchair accessible before I go and I need special accommodations when I go to a restaurant or travel somewhere. My wheelchair are my legs and I need it to get around and to enjoy my life. But I have gotten used to it, of course it still has its challenges. Now I am in a wheelchair, before I wasn’t. It would be easier if I had an accessible vehicle van to get around in. 

Having muscular dystrophy has caused me to rely on my family, friends and caregivers to maintain my daily life. When I fall on the floor and I am unable to get myself back up, I have to hit my lifeline button to call the fire department and EMT to help me up from off the floor. When that happens, I feel helpless and upset, like my body betrayed me. Why me? Why do I have Muscular Dystrophy? I turn to TV shows to put me in a better mood or chat with others in the disability community to get the support and comfort I need. I am part of some awesome groups on Facebook such as Living with Muscular Dystrophy and Living with Limb-Girdle Muscular Dystrophy, and I also follow hashtags and people I have met on Instagram. When I was first diagnosed with Muscular Dystrophy, I felt incredibly supported by these groups because I was not sure what the future held. What was going to happen to me? It was scary, and once I became part of the Muscular Dystrophy Association, and reached out to others on social media, I felt that connection. It made me feel like I was not alone and they understood that and made me feel like, “Ok, I got this.” 

The COVID-19 pandemic has definitely affected me. I am a person at higher risk because my Muscular Dystrophy causes me to have breathing and respiratory issues, so I have to take things slowly, and be extra cautious having my caregivers coming in and out and receiving packages. I have to spray everything down. My caregivers have to wash their hands, put on hand sanitizer, wear gloves and a mask. I haven’t gone outside past my parking lot since March. Maybe soon I will feel more comfortable to take a stroll further, to a store or something like that. I haven’t felt comfortable doing that because I am fearful of not knowing what I am bringing back, if I go outside. I have been super paranoid about it and I feel like Coronavirus is out there waiting for me. I am hoping that soon I will feel more comfortable to go outside and at least, go up the street and get some more fresh air. I want to get my life somewhat back to normal, but with this pandemic, I am not sure how back to normal it will get... 

Muscular Dystrophy is a part of me, but it isn’t who I am. After being in denial for years, I realized that I had to come to terms that this diagnosis is here to stay and this is something I cannot control, like the current pandemic. I wake up each day not knowing what the body wants to do, or wondering if it is going to cooperate with me that day. I wake up each day and take things day by day and make it through the day, most times without having a fall.

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