Surprise, surprise -- I'm stuffed to the gills with pain pills after one of the most painful days in my memory, and I still can't sleep.
I'm going to struggle some with this post, mainly from trying to keep hyperbole out of it and hand it to you real. I also want my family to know that I did in fact get something out of going to D.C., which was absolutely beautiful. I was thrilled beyond measure to actually see the Capitol building, for instance. I watched a little girl fly a kite on the city common, walked through a tunnel of twinkling lights that looked so much like stars it took my breath away, got a picture of a genuine-article triceratops skeleton to send to my friend's little boy, who is bonkers over dinosaurs, and saw paintings so real they looked like they could tumble right off the canvas and into your lap. I had good experiences, and family time that I wouldn't trade for the world, especially since a REALLY BIG THING is slated to change all our lives very soon. A very good change, but a big and somewhat scary one nonetheless.
But unfortunately, a lot of my time in D.C. was spent in pain. A lot of pain. More pain than I have experienced in years -- and that is not hyperbole. I got off the bus and said, "My legs are strong, and I can do this." A bit later this changed to, "My legs are actually quite weak, but I can still do this." This then became, "I can't do this, but I'm doing it anyway." and finally, "I can't do this." When I realized I couldn't get us to the Museum of Natural History no matter how hard I tried, I sat down and wept. I wanted to -- oh, I wanted to SO MUCH -- but at that point I was forcing my feet off the ground by sheer will alone. My legs had stopped responding to my brain when my brain told them to move. My legs were just like, "You know what? Fuck you. Fuck you and that shiny red thing you walked in with. We hurt. WE QUIT."
I have never felt so ... disabled before. I've been disabled for my entire life, but somehow that fact never hit home like it did for me today. I sat alongside a path and said to my Mama and sister: "I just really don't like not being able to walk." And then I was crying. It was a beautiful day in D.C., meant for a fun family day-vacation, and there I was, losing my shit in front of God and everybody.
Now I understand why most people with my condition stop walking by the age of 25: walking hurts. Oh god, it hurts. I do yoga every day now, and walking still hurts. I take daily medication to make it easier, and it still hurts. Not just a little stiffness, not just a little discomfort, but shooting, stabbing, cramping pain that gets in the way of the things I want to do and interferes with my quality of life. There came a point during this day, when I had to grit my teeth and force myself to take step after step, when I would have happily surrendered the struggle and agreed --with zeal -- never to take another step for as long as I live. That's not hyperbole either. I was in agony. Mama and Biz gave me so many breaks, every block or half a block; every other bench, a random set of stairs, a convenient wall... and still I hurt, and it just kept getting worse.
And you know what? That makes me angry. That makes me sad. That pisses me off. That scares the daylights out of me. All I wanted to do was take a damn walk, for crying out loud! Instead I ended up all teary with impotent rage, envying ever jogger, every pedestrian who walked with ease. A kind of poison crept into my heart for a few minutes: I would look at these people and think, I hate you. And I hate you, too. And you. You can walk. You can really, truly walk, and I can't.
Maybe having these feelings makes me a selfish, horrible, self-pitying jackass. I don't know. All I know is that I have them, that I am at once saddened and frightened and angry and jealous. If I could pluck palsy out of my body and brain like reaching into a magician's hat and pulling out a rabbit, I'd beat it to death with my bare fists. I realize this sets me apart from some of my peers, who wear CP as a badge of honor and would never give it up. I would. I'd hand it over in a nanosecond for a chance to have just one stroll down a beautiful city street with my family, minus the PAIN!PAIN!PAIN! alarm going off in my head every time I put one foot in front of the other.
It's going to take me quite some time to come to terms with all that I'm feeling right now. I'm gonna have to cry some more. I might even have to slam a few doors, throw some things, and screech at nothing in particular. I'm confused and depressed, so if I seem off, that's why. If I don't seem off, please know that I'm still struggling and I'm going to need some help. You're allowed to ask me if I want to talk about it. The answer may vary depending on the day, but yeah. I also like hugs. And if you hug me and I randomly start weeping, please don't be alarmed.
I hesitated to even write that last paragraph, because those of you who know me know that I don't usually ask for help like this. And I don't want anyone to feel as if I'm surrounded by grenades that might explode any minute, or that I'm standing on a cyber streetcorner screaming, "Pity me!": I'm still Tif. Just check in with me once in awhile, yeah? This is a hard thing to go through and an even harder thing to admit, and I need a little help from my friends.
Thanks in advance,
Tif
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