It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Sunday, January 13, 2008

I Wish There was Some Way to Impress Upon Kids who Have to go Through Absolutely Horrible Torturous Therapy...

that I now choose to do absolutely horrible torturous things to myself by my own free will. That really, when they are 20 or 22 or whatever, they will be oh so incredibly thankful for all of that suffering. There isn't anything anyone could have ever said to me whether it had been a physician (I think I am in the minority here in that I have mostly had positive experiences with doctors. I've very rarely been treated like an "object") or some random 20 or 22 year old college student who had CP. You'd think if "your own kind" tells you things that it might sink in. Nope. Not when it comes to absolutely horrible torturous therapy. It would not have worked, I guarantee it. I can see myself at 10. "So what. So I am going to be thankful when I am older. I don't care. I don't want to do this. I don't want to do this!" There is one really bad thing that comes out of tons of therapy. I spent so much time alone with adults, I never really learned how to interact with my peers. But the rest I think is good, for the most part.

There was one thing that I once said to a 10 y.o. kid who I think was an incomplete quad (I'm not allowed to know, HIPPA) that I think actually got through to him. I was playing UNO with him when it was time for him to go to PT. He kept looking at me like I was supposed to stop the CNA from getting him out of bed and into his wheelchair. So I said "What are you looking at me for? I'm not going to stop her. When I was younger I had to go to physical therapy, speech therapy, and occupational therapy, and I didn't want to go. Nobody cared. Nobody's gonna care that you don't want to go either." That is what a 10 y.o. needs to hear. I'm sorry it sucks, but too bad. It doesn't just suck for you, it sucks for everyone else too. Not, you'll be glad you did it when you're older.

Why am I thinking of this now? Well I can think of 2 things that utterly shock me. The first is that as late as high school my PT would put me on the treadmill backwards going 0.5mph. I b!tched and moaned. She said too bad, it's good for your glutes. I go to the gym semiregularly now and I like walking backward on the treadmill. It's not just good for my glutes. Since I am going at such a slow pace I can concentrate on kicking my abs into action which in turn both decreases my waddle and straightens me out. I LOVE that I stand so much straighter now. I spent 22 years hunched over and only 6 months straightened out and I can't believe how crappy I felt when I got depressed and stopped going to they gym. OMG how I love being straightened out. It feels SO GOOD. Also, now that I can walk backwards at 1.0mph I really have to hold on. I kind of push down like if I was using parallel bars and it really works out my lateral delts, which is good because I haven't really concentrated on that area.

me, 3 y.o. on a pony w/my trainer & a volunteerFor Chanukah my mom gave me horseback riding lessons. That is my most favorite thing to do in the whole wide world. I rode from when I was 3 until I was 16 and the divorce lawyer got my horseback riding money. It's been 6 years since I've really ridden. I suck. I've almost completely lost my form. I'm leaning to the right so much that I feel almost like I might slide off one day. It's a complicated mess of CP reasons why I'm leaning so much, but I used to not really lean. It took years of being tortured by my trainer to get me to not lean all that much.

[This picture of me was taken in 1988, when I was 3. I scanned it in for a school project & I think I look cute, so I added it.]

This new trainer is either going easy on me or is not as good. I was just getting in the shower when a light bulb went off. "I know what to do to stop leaning! I need to ride without stirrups." Oh how I HATED riding without stirrups. I spent at least 3 months straight spending probably half an hour riding without stirrups 1-2X a week. Oh how I b!tched and moaned. When you are riding without stirrups and lean as much as I lean, you don't just feel like you are going to fall off -- you do fall off. If you don't want to fall off, you stop leaning so much.

When my trainer wanted to be really mean she would put my horse on a lunge line (kind of like a really long leash that attaches to the saddle) so I didn't have to worry about my horse running me straight into the wall, take away my stirrups, make me drop the reins, make my horse trot, and then say "Put your arms out, and pretend like you are juggling. Juggling helps you learn how to sit up straighter. I wouldn't put my arms out. "I am going to fall off," I whined. "You are not going to fall off," I got. "I don't care how long I have to stand here, I'm not helping you get off until you do it and you can't get off by yourself."

Now I am going to go to my next lesson and tell my new trainer that for the last 10 mins I want her to help me get my feet out of the stirrups. I am flabbergasted. I even want to juggle too. One step at a time though.

I feel better both physically and mentally doing these things. I know that I need to "torture" myself now more then ever, or I won't be able to survive my life. I don't mind torturing myself. Surviving my life is worth the sacrifice. How do you tell that to a kid though? I have peers who have CP who are just fed up with everything. They've had enough of everything so they just flat out quit and sit on their butt all day. It's a shame.


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