When I was diagnosed with an untreatable fatal disease two months ago (bulbar-onset ALS), I had the sensation of stepping off a treadmill. There were/are the expected existential thoughts brought on by the imminence of death, but alongside that I became aware of a delightful silver lining — so much didn’t seem to matter anymore! I could say no to so many things I’d never wanted to do in the first place! Having a fatal disease was the perfect excuse for not mowing the lawn, or cooking dinner, or taking out the trash (though I am perfectly mobile and strong). Maybe I could even dispense with taking strenuous exercise and vitamins. I had the feeling I was being lowered gently, by many kind friends and acquaintances, into a deep well.
Two months out the view is quite different. I might be closer to dying, but I’m not dead yet and, were you to see me on the street you wouldn’t peg me for someone close to death. There is no definite prognosis, but I could be around for years. And those years won’t be spent languishing on a settee like an opera heroine waiting for death to take me. Life is more difficult now — it’s hard to talk and swallow — but it is also mostly the same as before. It turns out I haven’t been given carte blanche to blow things off. I still have books coming out that need to be promoted. I still have taxes to pay. And habits of self-maintenance die hard, so I’m still exercising and choosing not to eat ice cream for every meal. The idea that I am “clinging” to life doesn’t feel like the right description, as I’m living as fully as ever, certainly more appreciatively than ever.
I was a hospice volunteer for a few years, and in that time I witnessed several people dying. I learned that it’s rarely easy to die; it requires focus and often solitude. Even in the face of serious illness and pain, it’s hard to let go of loved ones — and life itself. That used to surprise me, but no longer. We’re alive, and mostly happy to be so, doing what we can, until that final breath.