Linda hand-fed me yesterday when I woke at 10:30 pm. Our plans of exercise, or an evening out, like all the plans this week put on hold. I was too weak to hold up my head, or use my arms. It was my first meal in many days. I was, after two hours, strong enough to be up for a few hours.
Monday night I thought that this was going to be the best summer since 2008. The edema was going away and I was wheeling again, I had worked up a schedule in my head on the amount of practice wheeling and then my first 5K in years, I guess. Then up to a 10K.
I went to sleep thinking I would wake up a few hours later, but I woke up 12 hours later, the Beacon care worker for the day having not come Friday either. A week gone by but I have just a few hours experienced in it, otherwise paralyzed or sleeping.
They talk about the weakness and sleep needed toward the end. Is that it, or is it from the dehydration, the lack of food, a couple meals for the whole week, and no IV. Will I wake tomorrow to find I have slept another 15 hours, and have 6 hours up or back to having my 12 hours awake each day? The only way is to lie down and take that chance.
Sometimes you can do everything ‘right’ and still end up getting weaker and weaker. If you have seen Porco Rosso’s the film by Ghibli (subtitles recommended!!, UK version best), you will know what ‘A pig’s gotta fly’. It means that for some, you are what you are regardless of how the world spins. And you know it because you carry the weight of it. It feels like a burden when I am immobile, sometimes it is your curse, but when you fly it is what makes you complete. To compete, without reserve, is how I fly.
It was good that I went from Epee Fencing to Wheelchair boxing. I was used to getting hit, I didn't know that I needed it, wanted the challenge of high speed chess of the mind and body with a penalty of a bop to the nose or lips. It is who I am.
My parents didn’t come to my basketball games, even though I played on three teams at the same time. “You’re not from our family line,” they said to me when I woke before them every day to practice for an hour by myself in the gym. “There are no athletes in our family tree.” I was a stray dog. Good at nothing but still going back for more.
After the ball of my knee ground into inside kneecaps, and I couldn’t walk, or sit, and woke from pain every night. Marfan’s made my body hurt, as the muscles were slowly stretched apart for every day and every minute from puberty until now. That’s just the way I grew. Too tall, one side longer than the other. And after the knee operations, the doctors said, “Be very, very careful because we cut away so much muscle, if anything goes wrong, there isn’t enough to repair.” So I did downhill skiing and ran, and ran, in the morning, in the middle of the night around and around the Rose Bowl (3 mile course). “Don’t know where she gets it from…” my mother said, and my father shook his head at my ‘waste’. I hated myself because what I had been taught, and the thoughts banging around inside of me meant that the love, attraction, and how it made me feel, knowing myself as well was what my parents, my school, my community, and my God hated about me most of all. When I felt that way I ran. In 110 degree heat I ran.
A 10K used to be my daily ‘slow’ warm up before the later run of 18K or 25K or a sprint of 5K or 8K. I ran, went to uni, worked, ran, slept, got up in the middle of the night and ran and then slept the rest. Every day. I had no significant talent. I was going for ‘qualifying’ times.
I have run tens of thousands of laps, I have cycled thousands of miles in triathalon training. “What is possible?” Is all I wanted to know. “What IS possible?”
I found that in trying to find out, I ran into no shortage of people who told me what was ‘impossible’. Strange people who delight in other's failure. I also learned I am the best coach for understanding my body movement. The US 10K champion also had a leg 1.5 inches shorter than the other. I am used to biking dozens of miles to get to basketball games, playing then biking home. I never quit, I never failed to show.
I probably am equating sports for something, and I really don’t care, all I know is that I will always be the person striving to gain the highest endurance and putting out the highest personal energy in any training or sports room. I plan, I practice, I try. If I fail or not is never as important to me as being there, as trying.
I will fly again. This girl has got to fly.
5 hours ago