I often feel like it’s hard to come up with the right words to talk about all the complexities of my thoughts I have surrounding my disability. As a lifelong disabled person, that seems kind of crazy to say. Sometimes, I will hear someone say something and think, yeah that’s what I’ve been trying to say for years! It’s not that it’s some big, earth-shattering thing. Often, just a simple phrase.
Recently, I was watching a show, and one of the characters had a disability. She said something like, “I’m always trying to prove to everyone around me that I’ve got this under control.” I thought to myself, “Yes, I can totally relate!” That is what it feels like to me.
I think we can all relate to that in some way. Often, we go around and present our best selves, stuffing away all the ugly and hard, right? We want those around us to feel like we’ve got this under control. The trouble is, we often don’t. Life is messy and hard. Also, it can be joyful and enjoyable. A mix of feelings, often intertwined with each other.
Part of it is, we don’t want to burden those around us with our troubles, because we know of something difficult that they are going through, or we don’t want to come off as complainers who need to get it together. So, when asked how we are doing we say, “I’m fine!” Followed up by, “how are you?” often met with, “I’m fine, too!”
Having muscular dystrophy, it’s hard to find a balance between not keeping all your frustrations bottled up, while also trying not to seem like a downer to everyone around you all the time. There could probably always be a complaint, or a frustration due to the lack of muscle strength that can make even the littlest things a huge or impossible task. Most of those frustrations are kept to myself. I must find ways to process all that daily frustration.
In a lot of ways, I do feel like I have things under control, as far as management of daily routines, but in some ways, it feels like I totally don’t. Now, and into the foreseeable future, a lot of what happens regarding my disability is out of my control. Some days, I’m able to neatly put those scary feelings into a little box, and other days I can’t get away from those thoughts of “what does tomorrow hold for me?” Will it be the day I can no longer walk or do certain things independently that I’m used to doing?
The truth is, none of us knows what tomorrow holds, disabled or not. We are all facing challenges in one way or another, that’s for sure.
Living humbly courageously with a progressive muscle disease can be challenging. I don’t always feel so courageous when forced to face those difficult realities. I have come a long way in accepting my reality, but that doesn’t mean that it doesn’t terrify me. It does, and it can be difficult to relay those thoughts to someone who isn’t faced with those same realities. I have many people in my life that do try to understand though, and for that, I am so grateful.
Until next time …
Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.