October 24, 2010

Helen Tweddle’s Birthday

Today I would characterize as a day of feeling sorry for myself. It is clear to me that I feel like crap, things hurt in ways they have never hurt before, and it seems to be a really fucking good idea just to quit. Of course, I don’t know what that means really, and certainly I’m not committed to suicide or giving up. It just feels like I’m hitting a brick wall over and over again; perhaps not a brick wall, but a spongy unforgiving wall of a future that does not want me to be in it.

Cycle 2 hangs on for dear life. Not only are all of my good friends and assistants firmly attached to the Judith they have known and served for many years, but they keep asking me in beautiful ways to resurrect myself as a familiar Judith. There is absolutely no maliciousness in this and I am not complaining about it. It’s just amazing how insistent and seductive is the demand that somehow everything get back to normal ASAP!

Today a leader in the area of early childhood education, a man who I respect deeply and who in the past was part of my original liberation from the institution, this man called out of the blue. He spoke of how I am needed around the BMX model of inclusion. Of course, he has no idea that I wrote about it yesterday and he was speaking in general terms in order to encourage me, but just the same. It’s like this insistent loudspeaker call to get up, get up, get up, get back on the horse.

Of course, there are other voices. My friend John McKnight, called in appreciation of my writing and at the same time acknowledged that there is death in every day and some day there will be the “death”.

This is of course a conversation I want to have with somebody. However, I am not certain which somebody I want to have it with. With most people I don’t want to have it because it sounds like I am being a sucky baby. I don’t want to have it with my friend who plans death rituals because she always makes me feel like she’s way too eager, like hovering and anticipating that moment when she can take over. Well, with whom do I want to have the conversation then?

Perhaps with myself and of course, through me, everybody. It’s always been that way. When Shafik had a stroke, he was allowed to die because he had always said he did not want to be uncomfortable and unable to participate. (Shafik lived with bone cancer for about 20 years.) I understand him completely now as the pain is relentless. Such a small thing and yet it consumes every moment in management, energy and thought. It is such a stupid little pain too. Almost non-existent and it seems like nobody could ever find it and tell me what it is, but it makes it absolutely impossible to lie or sit still happily for more than 20 minutes at a stretch.

I have formidable energy, WILL, a multitude of good friends and resources, and I live in possibly the richest and healthiest country in the world, and yet I cannot get myself born into Cycle 3, able to sit or lie down and BE with contentment and focus. Perhaps it’s way too early in the game, but I was never patient.

Can I actually imagine keeping myself healthy and my circle managing all the intricacies of my life with me living for years in pain, and being an artist – an artist of any kind – even a two page a day artist? It has been done. Person after person tells me of people who live day by day drugging and bandaging their painful parts going on and on. Do I not have a tapestry of Freida herself who painted and wrote her pain over and over again?

But I cannot simply die. It is too much of a failure. Somehow for me it is an absolute failure. I, who have learned how to manage multiple sensitivities and incapacities, predict and tune so that my body can continue, living cautiously even reminding myself month after month to “carefully” cross the roads that I love to slip down in my fast wheelchair – I have learned how to live and I do not want to die. But neither do I want to winge away in a bed as if I were literally lying on live coals, morphine or not.

Where is the open door, GOD DAMN IT?!!!!