Dreams, Fears, Hopes, SDR

World Cerebral Palsy Day 2021

Me sitting at a wedding reception in a red dress, smiling. My hair is partially down and I’m wearing silver hoop earrings and red lipstick. My logo is in white in the bottom left corner.

Well, it’s that time of year again. Today is World Cerebral Palsy Day. I usually like to take this day and reflect on how far I’ve come and if my relationship with my disability has changed. Or if it hasn’t. For the record, I think both instances are ok. If this relationship changed as frequently as the weather, that’d be fine. Or if my perception of being disabled hasn’t changed since last year, I don’t really see anything wrong with that. Even if I had a somewhat negative view of my disability at times (this is a hypothetical) that would be ok, too. Being disabled isn’t always easy. In fact it can be challenging and frustrating. Not whining. Just being real.

My journey of reconciliation with my disability has had its ups and downs. Seems especially true after having SDR. As you might imagine, those early days of recovery/rehab were extremely difficult and very painful. I got frustrated. Sad from feeling behind because I had to prioritize my health and wellness over other personal goals. Of course, the surgery was well worth it. And everything worth it is hard. We know that by now. Obviously the surgery was beneficial and dramatically improved my mobility, otherwise I wouldn’t have gone through with the whole ordeal to begin with. Point is, here I am now, over a year and a half after having SDR and with no regrets. What a journey it’s been! I’ve learned far too many lessons to count about myself. Like appreciating possibility. Or the chance that things will improve, that I’ll live a life with better mobility, with ease of chronic pain and discomfort. Or hope. Just when you think a door has closed, something pushes it open again. In my case, that something was SDR. It gave me more hope than I could’ve possibly imagined. More hope is always a good thing.

The dichotomy of disability as something inherently bad or inherently good isn’t useful. At least for me. In reality, my perception is far more complex than that. So really, I think the dichotomy is clearly incorrect. Why? Because I have good days. Days I can get through without too much fatigue or pain. Then I have great days. Days where the fact that I’m disabled can drift to the back of my mind. For a minute or two. Cause really, it’s always there. I’m just able to push it to my subconscious. How can I explain it… if I’m sitting down in a chair, I honestly have to remind myself that I’m disabled and it affects my mobility. It’s like sitting down evens the playing field. I don’t have to think or worry about about walking and walking with crutches because I’m sitting down. It’s when I finally stand up that CP pushes itself into my consciousness. You know? The voice in my head literally says oh yeah. The CP. Not saying that the absence of disability equals a great day. My CP is never absent. Obviously. So it’s not the absence of disability. It’s the absence of worry. Anxiety. Any day with less worry or stress about being disabled or The Fear or about falling properly if I do fall….that’s a great day. Then occasionally I’ll have Awful days. Yes, Awful. With a capital A. Days where I’m so tired and in such pain that I’m convinced my legs will fall off. Or I’ll have pain in my back from sitting up too long. Or my muscles feel so physically tight that I have to stretch just to relieve the sensation (reminder, please stretch everyday). Days where I get callouses on my hands from holding onto the crutches so hard or where my arms ache from holding up my body weight if I’m standing still for too long (note to self: try not to stand in one spot too much. Keep walking. Even if you have to walk in circles). Or if I have no choice but to wait on a long line for something because my freaking stubbornness prevents me from asking to be moved to the front so I don’t have to strain standing still. Wouldn’t be special treatment. It’d be an accommodation. Many confuse the two. Let’s be clear: I’m not asking to be treated like royalty. I’m asking to be accommodated. Most people have no idea how difficult it is to stand in a damn line. It’s one of the most exhausting things I can possibly do. So you’d think I’d ask to move to the front of the line but I usually don’t. Maybe it’s fear of backlash. Probably. You’d think being me meant I wouldn’t be worried about what a stranger thinks of me or says about me but it’s not that simple. Maybe I’m more assertive in theory, not in practice. Have to work on that. In a perfect world I’d go to the front of the line and not give a damn. It’s true that if you push me hard enough, I push back. Guess that’s something. I hope so.

Tangent over. Where was I? Right. Compartmentalizing disability is just misrepresenting it. To do so would be doing someone like me a disservice. Just like my recovery from SDR is a journey, being disabled is too. Yes, life with a disability can be hard. As hard as it can be, it can be beautiful too. Alright, I don’t mean to be too cheesy but it’s true! Seriously. Whenever I have a particularly difficult day or few days or week, I remind myself to breath. Smile. Eat a chocolate bar or something. Life is hard enough in general. If we don’t try and balance it out with some joy (like hope, that often brings joy), the world would probably be a really dark, insufferable and unbearable place to be. Who wants that? I don’t. I’m only here once so I think I’d rather enjoy the ride. Am I right?

I wanted to wear something green in honor of this day but I don’t really own anything green. Hopefully this blog post will suffice. So, to all those who observe this day and to those who do not: Happy World Cerebral Palsy Day. If you’re reading this and you’re non-disabled and/or had no idea what the heck World Cerebral Palsy Day even is and that yes, it’s a real thing, now you know. And hopefully you learned a little something more today. We all benefit from more knowledge.