I’ve said before that I’m hardly the face or poster person of cerebral palsy. Just here to tell parts of my story, not presume anything about anyone else’s. However, my twenty-something years of lived experiences with a disability gives me some authority on the subject.
When I was younger I thought I was invincible. If I fell over, no problem. Slipped, tripped, no big deal. In retrospect, I thought my disability would “stay the same” since it’s technically not degenerative. I didn’t get “worse” but certain symptoms and attributes related to CP did. As I got older, my muscles got tighter, were less flexible. Felt very stiff. Fear crept in like a rising tide. I started to be afraid. Afraid of falling, crossing the street or even walking down the sidewalk. That being said, here’s some humble advice I’d like to pass along, especially to someone who’s also disabled and who may be reading this.
Take care of yourself. While I’ve had plenty of good days, I’ve had bad ones, too. Days where my body aches, feels tired and simply over it. I’ve learned that when my body needs some TLC, to listen and just give it. A hot shower. A massage. Resting under a heating pad. Stretching and exercising. That last one’s very important. Exercise. Stretch. Please. Even if you feel like it’s not making any difference. Even when you might feel like there’s no point. It is making a difference. There is a point. Promise. I’ll admit that some days I really don’t feel like stretching. Some days, I see no point. CP’s still gonna be there. Yes. True. CP will still be there whether I stretch or not. If I stretch, though, I feel better and walk better. Plus, in the grand scheme of things, stretching really doesn’t take too much time. Just a few minutes out of the day. I know, I know, the toughest part is starting. Once you do, it’s worth it. Try and look beyond that indifferent, apathetic feeling and just do it. You’ll feel better. Ok?
Push past The Fear. I’m familiar with fear by now. It’s held me back. It’s set me back. One hundred percent. Pushing past it is hard most of the time. I still try. It’s almost like my potential mobility is just out of reach and if I could just get past this one invisible mental obstacle, I’d be golden. It is mental. Why else would I be afraid of falling or tripping when attempting to walk across a room with my cane if there’s literally nothing in my way? Nothing to trip over? It’s in my head. So, I understand being afraid. I understand it well. Anytime you feel afraid, though, that you’ll fall or slip or injure yourself, try and push past it. Especially if you feel like it’s holding you back. Don’t let fear control or limit you. If you fall or lose your balance or trip, that’s ok. It’s ok! You can get back up. You will. All you can do is try. Try and give it your best shot. If you try you’re already halfway there.
Lastly, this one means a lot…
You’re NOT a burden. I remember going out with friends in NYC and having to take its disastrously inaccessible public transit. Which meant I needed to ask my friends for help. I felt like such a burden for needing assistance to board the subway train, get off, and navigate the stairs. Been there. Now, with more experience, confidence, and self-assuredness than that shy fifteen year old, I can tell you…. try and silence that voice in your head, the snide one that’s telling you you’re a burden. Guess what, that voice is WRONG. Severely wrong. I’ll repeat it as many times as I need to. You’re not a burden. We are not burdens. Far from it. Yes, some of us might need help getting around NYC’s subway system, for example. So what? Frankly, the subway system should be more accessible in the first place. That’s the real problem.
Looking back, feeling like a burden and all that anxiety about being left out and like I didn’t belong robbed me of so many enjoyable experiences and memories. I was really stuck in a protective shell. That fifteen year old never really did anything in high school. Showed up, did the work, focused, went home. That’s it. There wasn’t anything else. Now it’s all just a blur. Not saying I want to relive those years because I don’t. I wouldn’t want that to happen to somebody else. I’d tell them what I really needed to hear back then. You’re not a burden. You’re a bright light exactly as you are.