Choices: dying, living and the parts in between

Disability, like an accelerated microcosm of life often requires people to make choices, to determine what is given up, what is left behind, what is willing to be sacrificed. And what used to be a slow, life process decided by the advancing of age where a person determines over years to stop a particular activity now must be made in a year, or in months, or weeks.

Today, S., a friend of mine is having a section of her brain removed. She goes in knowing that she may wake up and still be able to speak or she may wake up and have lost all of her reading, writing and speech ability. But this is the choice she makes to achieve what she wants, that chance of more of “a type of life,” And no, perhaps not the exact same life she had before; but enough of a life that it beats a few months of off and on vision and reading while a tumor grows inside.

She was the one who taught me that loss isn’t the same as death or defeat and that choices are better made and lived with in regard to quality of life, than left in the care of someone who doesn’t have to live the outcome. When I was a teen a friend had to have a second heart transplant. I visited them, I thought I understood what had gone on, but I didn’t; because I wasn’t in a space where I would have to risk my life or quality of life to make those choices. Now, I think I do.

I am on what I call “the down slope” which means my linguistic skills are decreasing, and, for example, I haven’t had a steady heart beat for two weeks. This means some sort of intervention is in my future. And I will have to move ahead and make a choice. In the same way, my four health crashes in the last eight days have started me wondering about viability and a colostomy bag. And once I return from Japan and am to be evaluated on swallow function I will have decisions about how to eat and stop losing weight. These aren’t exactly decisions you WANT to make. But back when I believed that I was a ‘victim’ to my medical condition, and I focused only on what I was losing, looking ever backward, S. came and showed me that in choosing I was taking hold of my life, or the quality of my life. And that in deciding what to sacrifice (like: ideas of dignity, of what is “intolerable,” ideas of the self), I could, no, not be in control, but not be a victim either. I was taking personal responsibility: I have assisted showers so I DON’T break limbs or go stinky, and I have routines to insure I DON’T get gangrene in my feet. And if I do get gangrene, then I will choose to have it cut out and find out how to live on from there. This is the gift that S. gave me. That “terminal” isn’t waiting on the sidelines, but going on full of fierceness by both living a day to day highest quality of life and by facing and making the decisions to defend that life, as much as possible.

I have to believe that S. will awaken and will have speech or will over time regain her speech and her language skills and much or all of her memory. That she will remember me, and that she will recover, be it across a week or a year, the ability to communicate to me. And she will do it while I still have enough of that capacity left myself so we can connect again.

I want, I need to believe that the future is more than watching one friend after another face the future, and live with a leering smile before dying. Dying, while I live. No more. No more friends dying, but friends recovering and coming back so I am not alone to carry the stories they told me; the lessons about disability which made me believe that laughter and sick jokes IS a form of resistance to human biology gone haywire. And that it is possible to live with death, death in your body, your systems and yet keep on living, keep on being YOU.
I guess this is what I wanted to tell you S.: You healed me. People want a miracle, but it was a series of words that rippled in me like waves in a pond. They turned me so I stopped looking back and started looking ahead. I stopped thinking only about dying and thought about the days of the life I had and how to live them. I embraced the mundane and the joys of a nice smelling soap because of you. I bought strange Halloween objects because of you. Yes, the death inside us is both terrifying AND a joke. And that I don’t know if I will ever be able to tell you directly any of this, but it is because of you I can say it. So come back, and let us be pranksters again, irreverent childish imps while time stands still for us. Because time isn’t borrowed, and death isn’t averted but it doesn’t have to be accepted either. So if you can, come back.

I’ll be waiting as long as I can.