Dreams, Fears, Hopes, SDR

Two

Me sitting down wearing a red dress with a red heart necklace. I'm smiling and posing with a cup of cookies-n-cream ice cream. I'm sitting in front of a window with the blinds down.

Happy Valentine’s Day! Well, here I am. It’s been two years since my SDR surgery. Yes, it’s unbelievable. Though, time tends to do that. Move forward.

It’s been a tough couple years in terms of all the recovering, physical therapy and personal training. Like I’ve said, SDR recovery takes work. Discipline. Even so, I don’t regret it for a second. I’d have the surgery again in a minute. That’s true today and it was true immediately after the surgery when I was in a ton of pain and incredibly weak, weaker than a calf. Having SDR was a tough decision but ultimately the right one. I feel like I repeat that phrase more than a mantra, but it’s true. The toughest decisions I’ve made, especially the really scary ones, have turned out to be the ones I don’t regret.

Honestly, right now I’m struggling to figure out what I want to say that’s any different than what I said on my first anniversary of SDR. Or any other day I talk about the surgery, really. I’m still grateful and thankful. Still proud of myself for going full speed ahead with everything mostly on my own. I had my wonderful support system, of course. The final decision about having the surgery? That was mine. You know, without the final approval of my parents. It was them and their decision-making when I was little that got me here today. Now it’s all in my hands. Scary as hell, sure. Also cool. Gives me just a bit more autonomy.

Or authority, maybe? After all, I’m the one with CP. Living with it and dealing with it every single second of every day. My support system experiences it differently. None of them have CP. They don’t know what it’s like. Not completely. How could they? They’re not in my body, so it’s an impossibility.

However, my support system is my loved ones. They all have feelings about the CP, I’m sure. At least I hope they do and they don’t just look beyond my disability. That can be harmful. Obviously. Like those weird euphemisms and phrases… “differently-abled,” or “handi-capable,” or “different-ability.” What is that? No. Say disabled. It’s not a bad word. And “seeing beyond” my disability is not only unrealistic, but also erases a huge part of my identity. Not my entire identity, no. But a huge part of it. We know CP isn’t all of me. It’s very important, though.

I weighed some options of what I wanted to do to commemorate this special day, my two-year anniversary of SDR. I decided to do another walking video. Not posting it here for a few reasons I won’t list. I haven’t even had a chance to film it today. Oops. Got busy and all. No big deal if I don’t post the video today on the actual anniversary of my operation. It’s not like my walking is going to change much from today to tomorrow or the days after that. I want to film a video using my crutches outside. I told everyone that I walk with my cane exclusively inside now. Walking with the cane outside became a safety issue. We all know safety comes first. Admittedly, at first I felt a little weird about the possibility of posting a video, like I was perpetuating something negative. Inspiration porn or whatever. I guess it’s different if I’m the one posting the video, with consent. You know, as opposed to someone else posting the video without my consent. To benefit non-disabled people and allow them to use my situation to feel better about themselves and their own lives, ones without the presence of disability.

Now I don’t see what the big deal is to take a video of me walking with crutches outside. Everyone in my life knows I use them. Beyond that and perhaps most importantly, I think anyone who uses mobility aids should use the one they feel the most comfortable and happy with. It took me a while to accept that using crutches doesn’t mean I’m going backwards or anything. The crutches give me a lot of freedom and confidence in my mobility. Freedom and confidence should be celebrated. Plus, I don’t want my crutches to feel left out. They should be filmed, too! That was a joke (a bad one). An aside: I don’t consider myself very funny. Maybe I’m wrong. Who knows. I guess sometimes I say funny things and people laugh. But I’m no comedian. You get the point. Moving on.

Important note: my walking videos aren’t about “overcoming CP.” Perpetuating that narrative isn’t my intention. I’m not going to do it. I don’t want to. There are so many things wrong with it. For instance, the aim is not for my disability to be overcome, the aim is for me to be included. Included and considered in an ableist world not built for disabled people. There are huge barriers all over the place and not just in lack of general accessibility into buildings via ramps and elevators (in other ways, too). How about lack of access in healthcare? Lack of access in the workplace? Think about it. Let’s say I’m applying for a job. Do I disclose my disability or not? I can’t hide it. Still, though, do I disclose? If I say I’m disabled, it might work against me. If I say I’m not disabled, it’s like I’m hiding something. If I decline to answer, it’s like I’m avoiding something. That’s just me, though. And it’s a hypothetical. Other people might have different thoughts and experiences on that. Point is, yes, I fight back against barriers….but instead of non-disabled people saying over and over how I’m inspiring for fighting back, how about they don’t put up ridiculous barriers in the first place? Access should be a right, not a privilege.

Marking my progress and sharing since SDR makes me happy. We all should do more things that make us happy, am I right? That’s all.