u/llemonjuiice

Last night me and my family went to go see my brother’s symphony performance. One of the people working the event was using a cane. When we found our seats she waved me over and told me that she saw the person who was using a cane “running around yesterday with a heavy camera” at the marching band event yesterday. My heart immediately sank. She said that they have a term for those people (she works in the medical field), and I saw her show my brother her phone with giant text saying histrionic personality disorder. My brother told me that there’s so many people who fake disabilities as if it was a common thing. All of this really upset me. I was just silently crying for half the performance. She called me selfish and a bitch when I responded to my brother’s question about which piece was my favorite with “I don’t know, I couldn’t pay attention.” I just couldn’t believe that she would be the type of person to say that. She’s been such a huge advocate for me with my disability. Those types of comments are why I constantly worry about what people are thinking about me in public. It’s what I worry about when strangers ask why I need a wheelchair, it’s why I catch myself acting more disabled than I actually am when transferring from my wheelchair. Because I don’t want people to say those things about me. Who knows, the guy I heard joking about me not being disabled when he saw me stand could’ve heard those same things that my mother said from his mother. I think she believes that she’s defending me somehow by saying what she said about that person. I don’t know how she came to that conclusion. Though it is on me that I didn’t tell her how this all hurt me when she asked. I was really upset and I probably would’ve started sobbing if I opened my mouth haha. I really wish I had the ability to walk away from conversations. Whenever we disagree on things I’ve learned to just give up on debating her because I never win and it just causes so much more conflict and stress. She caught me texting my friend about what she was saying (because I know that there’s no one in my family that would care to understand my side) and got upset at me for saying “horrendous” things about her. As if I was lying. I don’t know how to end this post. I just want to feel like I’m not overreacting or something.

Recently, I went on a beach trip with my family and stayed at a cottage. It was mostly accessible, with a ramp and a large bathroom. Usually when I’m at home, I don’t use any mobility aids, but at that cottage, it was easy to just stay in my wheelchair the entire time. It felt soooo wonderful to be able to carry my things around, go wherever I wanted in the cottage whenever I wanted, and to not rely on others for help. But my mother, looking out for me as always, sort of insisted I use my forearm crutches for the second half of our stay, and so I had to rely on others for almost everything again.
The immediate shift back to dependence just sucked. I had the thought that it would be so so great if I could just use a wheelchair 24/7, instead of just when I left the house. But I know that I would lose my already limited ability to walk if that was the reality. That last bit was further emphasized when I went to the Cure SMA conference this past week. I was reminded how lucky I was to even have my ability to walk when I saw how the majority of people with my disease relied on motorized wheelchairs. It’s just really frustrating to know that to really have that feeling of freedom again I would have to give up on the abilities I have worked for in all of my years in PT to maintain.
I just wanted to rant to someone about this because it’s been on my mind lately, and I’m not sure that my abled bodied friends would really understand so here I am