In the last couple of years, since my ALS diagnosis, I’ve lived two parallel lives. One was the life I’d always been living as a writer in which I devoted my mornings — and often beyond — to writing, followed by taking care of business, running errands, exercising, socializing with friends, reading, watching MSNBC, eating gourmet meals made by Paul, dancing with my old college classmates, and still saying yes to almost everything. The other life I was living was a small stream in a gulley running parallel to that regular life, and that was the life of a person with a fatal disease which was causing my body to weaken, so I had to find “workarounds” to get various things done, and I had to visit doctors’ offices, clinics, and infusion centers. The two lives ran their courses side by side without intersecting much.
In the last month or two that has changed. The disease has progressed and impinged on everything I do, slowing down every operation so it takes twice as long, or more. Most of my activities require help (though right now I’m here writing alone). I no longer say yes to everything, and it is no longer possible to compartmentalize and pretend I’m normal (whatever normal means). My two lives have converged and, though I’m trying to resist this identity, I have become mostly a person with ALS. Perhaps there are good reasons to be able to compartmentalize, but I think my use for compartmentalizing is over. I am a person with only one life which has probably always been the reality I haven’t recognized. The lines from the oft-quoted Mary Oliver poem, “The Summer Day,” keep coming to me: “Doesn’t everything die at last, and too soon?/ Tell me, what is it you plan to do/ with your one wild and precious life?”
As many of you know, I plan to end my life by invoking Death with Dignity, the law in Oregon that allows people who are expected to die within six months to take their own lives by swallowing — or injecting into a feeding tube — a combination of lethal medicines. I have never known anyone who has done this personally, although shortly after we moved into our current house our neighbor’s husband did the same thing. He had both Parkinson’s and dementia, and he took things into his hands before he would be too helpless to do so. Though we didn’t know him, had had only had one conversation with him, the day he took his life was intense for us. We knew what was happening, and saw friends coming to the house to witness his passing. There was an energy in the air that reached us.
As much as one might want to die, it isn’t easy to convince the medical community to allow you to do so. You cannot simply decide to depart when you have been given a fatal diagnosis. Two doctors must sign off saying you are unlikely to live more than six months. The medical community — and I am not speaking of individuals, but the profession at large — would like you to live as long as possible. It is their goal to support and sustain life, so they usually offer another “fix” for your symptoms rather than facilitate your attempt to slip away. Additionally, doctors, understandably, do not want to be sued for malpractice because of prescribing a drug for death if a patient might live longer than six months. How can they know for sure? Obviously, they can’t, especially with a disease like ALS, in which a patient can decline very quickly or live for years. It will always be an educated guess. I do not fault doctors for being cautious about this. They must do a very delicate dance with the law, just like the doctors who would like to perform an abortion on a pregnant woman whose life is in jeopardy but are prevented from doing so because of our laws. I suppose I understand why the law stipulates a time frame for Death with Dignity, though I think there is a big discussion to be had here about whether we should give everyone the prerogative to end their lives whenever they so choose.
But for me, now, I have been wishing that the signing off weren’t dependent on the numerical measures of my strength and breathing capacity. I wish I weren’t trying to portray myself as weaker and more incompetent than I am (which is pretty weak and incompetent already!). I wish my doctors would say to me: How do you feel about this? Do you find your quality of life to be acceptable? Are you ready to go? But that is not what they have learned to do in medical school and in medical practice. If they can keep people alive longer, they have the impulse to do so. However, they are also, first and foremost, empathetic human beings. My doctors and I understand each other and are trying to work this out together. Despite the constructs of medicine and law, I sense we all have the same goal in mind.
Still, I have felt it necessary to be my own advocate and to push strongly. No one else is going to be a cheerleader in helping me toward death. My husband and son and friends and extended family support me, but I have to be the motive force. I have felt myself working against the strong gravitational pull of social norms. The norm of simply moving forward, pushing on, sticking around, putting the next foot forward. The norm of the status quo — which happens to be staying alive.
It isn’t only a social pull. With all living creatures, myself included, there’s a strong cellular call to remain alive and adjust to whatever reduced conditions arise. I am thinking about how lizards can regrow tails they’ve lost, how new neuronal connections grow in the brains of people who have had strokes, how animals everywhere are already adjusting to climate change to enable the continuation of more generations. There is a biological mandate to survive, to propagate your species, whatever that species is. The urge to die, Thanatos, is an anomaly among living creatures.
I came into the world slowly, biding my time. A false alarm sent my mother to the hospital on Christmas, but I stayed in utero until three weeks later on January 15th, which seemed like an auspicious time to arrive. 😊 My current plan is to exit on that same date. I know that plans are often made and broken. This is especially true with those who request Death with Dignity drugs. Thirty percent of people who request the drugs in Oregon never take them. I do not think that will be the case with me, but who knows.
See you next week!