Independence. It’s a word that can take on so many different meanings.
Something you will hear when listening to the current fight within the disability community is that we are fighting for our independence in many different areas. Why? Because independence is important to living a confident and fulfilling life. There are many ways in which our independence can be taken away from us. There is also always someone who would be grateful to have independence in areas we take for granted.
For me, I am fighting to keep walking, which of course provides a great deal of independence. It’s something many take for granted.
Each day, I sit up in my bed independently, and I’m grateful. Every single day. I thank God that I still have this ability. I swing my feet down to the ground and take a deep breath. I pray that I will be able to stay on my feet without falling, and I give thanks for the continued ability to walk, even if it is laborious.
Then, the intense focus begins.
Every single step, focused. When walking, if I take my focus off every step, even for a second, my right foot will catch, and I will trip and fall. When I fall, I’m likely not getting up on my own. At least not without crawling to the nearest surface where I may have a slim chance of hoisting myself up, depending on how badly I was injured in the fall. Luckily for me, most falls result in a few hours of rest, icing, and some soreness for a few days, although I have fractured my foot and my knee in the past from falls, and dealt with concussions.
I am not trying to be a hero by continuing to walk. I have nothing to prove to anyone, and there is also no shame in accepting the help of an assistive device. At this point in my life, I am an ambulatory wheelchair user. A common misconception is that those who use wheelchairs cannot walk at all. Of course, that is sometimes the case, but certainly not always. For me, I can still walk short distances in areas I am familiar with, where I can grab onto certain things for support.
There is a lot of mental planning that must go into each day. I don’t mean only planning daily activities, but rather planning how I will get out of certain chairs, or from one place to another. Are there stairs, is there a railing, or a curb? Mentally assessing the pathway. Is it crowded? Even the slightest bump from someone can easily send me to the ground. Constantly planning my next move before it happens. It can be a lot of internal stress.
If you were with me, you would never know all those thoughts are going through my mind! But they are constantly. Going out independently in public is something I must give a lot of extra thought to.
Driving. So much independence comes from being able to drive. Many living with neuromuscular disease do not have this opportunity. Again, I’m grateful. I often talk about how, in the water where I exercise, I don’t feel disabled. I feel free. That’s how I feel when driving too.
Adapting to stay as independent as I can is my goal. It’s important for those of us living with disabilities. So much of what happens because of our disabilities is out of our control. I can choose to focus on areas where I’ve lost independence, or I can choose to focus on all the things I can still do. Sitting around feeling sorry for ourselves is a dead end. We are only wasting time when we do that. It’s very easy to fall into that trap.
Accepting that my independence may start to look a little different is something that I need to continue to work to embrace. Even typing that sentence makes me a little uncomfortable because I know it’s not going to be an easy thing to do. Having a lifelong disability, I’m very aware of what lack of independence, physically speaking, looks and feels like. Take time to stop and appreciate even the smallest things you can do and be grateful. All these things are a gift.
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.