Sometimes I got angry at my parents for overdoing it when it came to accommodating my muscular dystrophy as a kid. Usually this anger was directed inward, other times I made it known what I was feeling. Take for example, the elevated toilet seat conundrum.
One day I came home from high school to discover that our back bathroom now had one of those screw-on plastic toilet seat elevators. They’re designed to boost you up a good six inches to make standing up from the toilet much easier.
This made me furious for a variety of reasons.
1. They assumed I needed this and didn’t ask me first.
I’m nearly 100% sure my parents had never actually seen me get up from our bathroom toilet, or any toilet for that matter. I could still get up from the toilet seat just fine. They never asked me. Rather they assumed I needed it and just bought the thing, which I promptly detached without even trying it.
2. They second guessed my reaction, put it back on and said, “Just try it first!”
So I tried it. I knew it wasn’t going to work because it hand handles that would impede me being able to position myself to stand up. The thing slid around and actually detached while I tried to position myself. It didn’t work and actually could have resulted in me falling on the floor if I wasn’t careful.
3. It felt like an insult.
It honestly felt like they were saying to me, “We don’t think you can do this anymore” or “The way you get up from the toilet is not the best way” or something along those lines. It made me feel like I had no control over how to deal with my own physical issues. I felt like they were saying, “We know how to deal with this better than you do” even though they really had no idea.
4. It brought the future screaming into the present.
Even at that age, I knew that things would be more difficult in the future. However, until that moment, I’d felt like difficulty was still pretty far off. Seeing this special toilet seat immediately turned “something that will happen eventually” into “something happening right now.” Cue the anger/frustration/grief.
I know now that my parents’ actions were coming from a place of love and caring. I also know they had no idea how to deal with helping me when I needed it or even knowing when I needed help. They tried to jump the gun and stay ahead of the curve, but it ended up frustrating me and them. In one sense I think they needed to experience my reaction to this toilet seat as a way to learn how I wanted to deal with muscular dystrophy.
It wasn’t until after this incident and a few others that I finally was able to verbalize to them “If I need help, I will ask for it!” and they actually believed me.
After all, if I got to the point where I couldn’t stand up from the toilet by myself, what was I going to do, just sit there forever?
What I wish my parents had done:
1. Sat me down prior to buying anything and asked me if there was anything I was having difficulty with that I could use some help with.
2. Accepted my likely answer of “No, not right now.”
3. Then they could have said to me, “Okay, if there’s ever anything you thin you do need, then just let us know.”
4. If they ever felt compelled again to help me out without asking, repeat from step #1. ESPECIALLY if there was no potential physical danger involved.
Eventually we got to this point where they knew I’d ask and I felt comfortable asking but it didn’t have to be this sequence of frustrating assumptions and encounters that just resulted in them wasting money on things I wasn’t ready to use yet, physically or mentally.
Side note: I never did end up using one of those special toilet seats, by the way. It became easier for me to scoot onto an adjustable office chair and stand up by bracing my knee against a cabinet. After years of doing that I started using a wheelchair anyway.