How a Recent Fall Was a Vital Wake-up Call for Me
Sometimes we need wake-up calls in life.
They are near misses that tell us we need to make a change, approach a problem differently, or alter how we interact with others. These can take the shape of a car crash that tells us we need to pay attention and get more rest, or a family member who nearly loses their life to an illness, which tells us to value them more.
My wake-up call was a fall that could’ve been a lot worse. It told me that it’s time I start relying on other people and not so much on my own strength. Change is hard, especially when you have Duchenne muscular dystrophy, because this condition changes all the time. But we have to move forward and face our problems one step at a time.
A few weeks ago, I was attempting to sit back down in my power wheelchair after using the bathroom. Typically, I raise my wheelchair up high enough so I can push forward from it and stand. From there, I simply do my business. Because of Duchenne, I don’t have the strength to get up from a lowered seated position on my own, so when I need to sit on the toilet, I need help getting up.
In that instance, I was able to get off the toilet on my own by pushing up on my wheelchair armrest. But as I lined myself up with the power chair cushion to sit back down, my leg hit one of the foot plates, which I hadn’t lowered all the way. It caught me off balance and hurtled me face-first toward the wooden floor.
To my horror, I also discovered my forehead hit the toilet seat on my way down and was dripping blood on the floor. Thankfully, it was a minuscule cut. But the repercussions in my life were much greater.
Even if I can do something, like using the bathroom on my own, that doesn’t mean I should do it. It could work out OK nine times out of 10. That is, until it’s the end of the day and I’m tired and I misstep. I was lucky this time, but the next fall could spell a broken bone or worse.
I realized after this near miss that I need to limit my risk of falling as much as possible. That means swallowing my pride and asking for help every time I use the bathroom. It can be awkward at times, but if it’s between putting myself in a precarious position and asking for help, I will always take the latter.
Just two Sundays ago I had to ask a mutual friend I didn’t know very well to help me stand up in the stall and use the bathroom. I didn’t have to stress about whether I was going to fall. It was surprisingly a relief to get that assistance. Of course, he had no issue with it. The only problem was the one I’d created in my head.
In a way, this fall helped me accept that I needed more help and that it was fine to ask others. As I wrote in my previous column about the Duchenne conference in Orlando, Florida, I shouldn’t rob the joy others receive when they help me.
But there’s another issue with my asking for help: I need someone to ask. Lately, I’ve relied on neighbors, my roommates, and my aides that come in the morning and night to lift me out of my chair to use the bathroom. Even so, there are other times when I’m alone during the day. I’m actively searching for someone who can close that gap so I can be covered at all times.
I know a solution will present itself, as it always has, but not without a little work. I’ve called nursing schools to see if there are interested students who might want to work with me and gain some experience. And I hope to get the state to pay caregivers for more hours.
For now, the solution has been inviting friends over to work from home with me or visiting my parents when they’re home or at their office.
I wish it hadn’t taken such a scary fall for me to realize I need more assistance and go through with asking for it. But that’s what a wake-up call is for. It’s time to change some things so I can have the best quality of life 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, and are intended to spark discussion about issues pertaining to muscular dystrophy.
About the Author
Nayra Gad
Thank you for sharing your experience and this inspiring message!
Rebecca Hastings
There is a toilet seat that attaches to a toilet and has electric power to raise you up. My husband has OPMD and has same issue getting up. Another product I found is a free standing electric seat/chair that sits over the toilet. Reach out if you want more info.