Koinonia (koinonia) wrote,

When I was a kid and we lived in England, I used to sit on the stairs a lot.
Not that the stairs were anything special. Grey carpet, the sort that feels like burlap and white painted wood. There was a rail on one side, but none on the other.

There was a landing, and a window, if you stretched and strained. You could get a glimpse of the front yard, and the cul-de-sac in front of the house. More often than not, all you could see out the window from the landing was sky, at my eye level.

I used to sit on the stairs, and whisper to myself. Stories and poems and sometimes..just words. Words that I read somewhere and never used. Places that I had never visited and wanted to go to. Amiens Cathedral. Tangiers. Benares. I also used to recite things that I'd memorized from one place or another. The first stanza of "Recessional" from Rudyard Kipling. A single quatrain from the Rubaiyat of Omar Kayyim. A single verse from the Bible.

It wasn't really hiding per se. Not in the sense of avoiding people. It was a chance to sit and go through the contents of my brain. Pick out the things that I wanted to keep, and discard the things that I felt no longer had use. For instance, after a while I decided that Santa Claus was very likely *not* real. Not that he wasn't a very good idea, but that if he really existed my mom would be in a much better mood in the morning.

I also decided that the Easter Bunny was probably not real though to be honest I had a lot smaller emotional investment in the Easter Bunny than I did in Santa Claus. There were always the lovely Easter Lilies that came from church every year, stretching their green stems upward, the creamy fragrant blooms like the ivory trumpets of the angels. The story of the Resurrection. Somehow, it wasn't so much the story of his death and suffering that I resonated with as the story of a Jesus so unearthly as he stepped from the tomb that Mary Magdalene thought he was a gardener.

I think, secretly I was very sad when the Catholic Church decided that she and the woman who had fallen were not the same. Not that I don't think that Mary Magdalene wasn't his disciple and someone to be respected. I always wondered how it was that the Gospel represented Mary of Magdala as someone that Jesus had cast seven devils out of *and* she was the woman who washed his feet with her tears and wiped them dry with her hair. Rather I loved the story of that woman washing his feet and drying them. I could believe that someone who loved him that much would give up everything to follow him. I could believe that someone who didn't give a damn what anyone else thought would be able to vibrate perfectly to his message.

Anyway..my path's taken me a long way from those stairs. A long way from the place I started from. I still remember the words, though. I remember the first verse of the poem. The quatrain. And the Bible verse. They stuck, like so many bright pebbles in a maze, when so much has fled.

I had a lot of dreams on those stairs. I wanted to be things that in retrospect I probably never could have done. Not in the way that I thought I could. But at the same time..if I'd tried, who could say? I might not have been the world's first handicapped ballet dancer. I might not have been a gymnast. But I don't know what I might have been.

I feel bad sometimes. I think that my life is almost over and that I haven't really done anything with it. I've floated from thing to thing. I've survived things. Sat on the stairs when I probably should have done things.
But my life's not over yet. Maybe the reasons why I do things are different now. I don't do them because I'm going to change the world. Or to become famous. But I will do them because I love to do them. Or because I know that this one thing is the right thing to do.

It's really easy to be angry. I was really angry for a long long time. I am not saying that I'm not angry now. It's just a different sort of anger.

You see..back then in the bad old days, people looked up to doctors a lot. When they said that something had to be done, then it got done. It didn't matter if they were right or wrong, they were doctors. And they decided a lot of things for me. No..they decided *everything* for me. They clipped the muscle that kept me crosseyed. I was later very grateful for that, but at the time I was three. I was too young to understand what was happening and why I couldn't see. I couldn't understand why they tied my hands. I couldn't understand why I couldn't go home and why it hurt.

And that not understanding kept going. Gathering strength. Through eight surgeries. Eight times, doctors told my mother that I needed to have something done. And she agreed. I hated her. I *hated* her for deciding things like that for me. How could she do that when every time that they did something it hurt so bad. During surgery and recovery, everything stops. Everything else shuts down. You're living from moment to moment. You're engrossed in the elemental fight to survive and to endure. You have to put everything else aside.

After that, you go backward. Everything you knew how to do you have to learn to do again. The world is spinning on, but you're not. You're stuck while you learn again how to get in and out of bed. How to get on the toilet. How to tie your shoes and get dressed. You learn how to use the crutches and the braces that the doctors proscribe for you and you struggle against all the times when your muscles just say 'no'. It's like walking through mud that comes up to your knees. It's slow, and it's slippery and it's *boring*.

It takes two years after every surgery, to be ready once more to pick up your life again. That's just..getting out of that emergency spot. Learning how to live again. Getting back into the flow of things. Starting to catch up. And if you have surgery again during those two years, you have double to catch up on. These aren't any statistics I cribbed from a book. Just what I've learned. Maybe other people are faster. Good for you.

I know now..that my mom was doing the best she knew how to do. She was carrying a huge burden of guilt. She felt that it was somehow her fault that I was the way I was. She was on her own, a military wife with three kids, and two of them probably got shafted on attention with her because she was always dealing with my handicap. I don't hate her now. I love my mom..she's a strong woman. But there are still some things that she really doesn't understand.

She said once..that she felt that Melinda and Trish got cheated of attention because she spent so much time with me, doing things. My therapy and my surgery and my doctor visits. Going up to UCLA to let them take films of me pushing a toy cart around so that that they could study them. Letting them do experimental surgery to make me better and straighter, and dealing with what happened when the experimental surgery turned out to be a waste of time. But Mom..spending time with my handicap isn't the same as spending time with *me*. I know that you were doing the best you could, you were stressed and guilty and yeah, Melinda and Trish got less because my handicap took more time. But I'm not my handicap, Mom. I got cheated too, because after a while I felt like I *was* my handicap. I felt like I was going to be nothing but a burden, and a handicap my whole life.

In a wierd way (yes there is a point to this) I used to feel justified in dreaming of becoming a ballerina. Or a gymnast. Didn't people say that this was America, and you could be anything you wanted? Wasn't I doing everything I was supposed to do. I was cooperating. I wasn't screaming and getting mad. I was cheerful and I was there for my surgery and my therapy and my braces. I deserved to be cured. I deserved to be a ballerina. I mean, that was the point, right? You worked hard, and you did what you had to, and you earned the things you wanted.

That's not how it worked though.

When I turned sixteen a very kind and thoughtful man who also happened to be a doctor told me that cerebral palsy was forever. The brain damage would never get better. I would always be handicapped.

I can't tell you how angry I was. I was cheated. Maybe it seems asinine now. That I believed so implicitly in being good and working hard. Or that I didn't understand that Cerebral Palsy was brain damage. I rattled off that it was a birth defect nearly every day of my life, to people who had the guts to ask me what was wrong with me. I almost never misinformed people.

I couldn't stop crying. I hated the world. I wanted to die. I wanted someone else to hurt the way that I hurt. I wanted someone to understand that I'd done everything right, so what was it all *for* if I wasn't going to get better? I even tried suicide a couple of times.

It just seemed to get worse and worse. I stopped caring. What was I doing it all for? I slid through school, doing what I had to to get by. Things just spiralled down and down for years. I even got married while under the influence so to speak.

Cancer came in the form of an abdominal tumor that turned out to be fibroid and benign, thank God, but I learned from it. I went to therapy. I'm still learning. Still trying to put things together again. It's been a longer stay on the stairs than I've ever had before. I don't know if I'm ever going to be the girl that I could have been. But I'll be whatever it is that God makes of me. Even if I don't see God in the same way that my mother does.

I'm tired now. I'm running out of steam. Writing this stuff is hard. Because I don't want it to be a catalogue of blame. It's meant to be an excision. Telling the truth and letting it go. Maybe if I can get it out there I can get rid of it. No more the kid people used to ask "is she retarded."

I don't even know if this is the way to do it. But it's the tool I have at the moment. And so to everybody else in the Sekret Crip Cabal, I say Goodnight. May you never hear anyone say to you ever "You have to work harder than they do, to be as good as they are."
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