At the suggestion of some friends, I started a TikTok account a few months ago. These friends know how passionate I am about helping others learn about empowering those of us with disabilities. They suggested TikTok might be a platform to get my message out to masses of people. Although getting results in terms of followers and likes on my videos has been slower than I hoped, I am making progress. And I am learning valuable things along the way.
It was through watching TikTok videos that I learned how to make homemade vanilla. I have also found other great recipes, hacks for cleaning and organizing, and skills to help me manage both my physical and emotional health. Some people have told stories that have made me laugh out loud. Some others have shared experiences that I would not wish on my worst enemy. But the thing that I have enjoyed the most in my TikTok journey so far is hearing the various perspectives of other folks with disabilities. In all kinds of ways, watching those particular videos have a way of making me feel like I am not alone.
Therefore, I pay attention when someone with a disability presents an idea that I had not thought of before. This morning, as I was waiting for my caregiver to arrive for their morning shift, I scrolled through TikTok for a few minutes. I came across a video by a woman whose handle is Seeingblind 101. Her bio says that her name is Cindy and that she is on TikTok to help anyone with a disability. She certainly helped me.
In the most recent video that she posted; she was talking about what she has been going through lately. She is blind, and she talked about how, in recent weeks, she hasn’t felt very motivated. She has been kind of apathetic about achieving her goals. She also stated that every so often she gets frustrated it takes her so many steps to accomplish the same thing that other people can do in about five seconds. She made the point that she wasn’t depressed exactly, but it was a struggle for her to get things done. She talked about how much she values her independence and that she is never going to stop trying to be as independent as possible. She mentioned compassion fatigue and how she understood sometimes people get totally exhausted when they care for others. Then, in a way that completely blew my mind, she put all of that together and labeled what she had been going through as “independence fatigue.”
When I thought about my own life and what my mindset has been like in recent weeks, I can totally relate. The term makes sense. I have been told by several people over the years that, because of my disability, I expend a whole lot more energy doing the day-to-day things I do compared to people in the typical population. Cold weather also means there is significant spasm in my body and those spasms increase my pain. Additionally, because Spring Break is coming up, most of my college student caregivers are going on vacation. That means I have spent a whole lot of time recently practicing getting myself in and out of bed and doing other things on my own that they would typically help me with. I will be fending for myself for a few days without them when Spring Break comes. I know that there are many things that I am capable of doing on my own. That doesn’t mean they are easy, or that I am not scared of what could potentially happen if things go wrong.
I never want anyone to feel sorry for me. Everyone who knows me well knows that I do my best to embrace my disability every day. I would not change my circumstances for anything because, although disability does not define me, it has significantly shaped who I am. There are also aspects of my disability that suck. Plain and simple.
In my quest for independence, I often get tired. It is a relief that I can now put a name to that particular state of my mind and my body. Periodically, I experience independence fatigue. I am not usually a fan of labels, but this one fits.
It makes me feel like I am not alone.