I guess I’d better start paying attention to the government debate over a new physician-assisted suicide bill. It wasn’t a thought I was expecting to have today, but there it is.
For the past few months, I’ve been undergoing tests to definitively diagnose a suspected inflammatory autoimmune disorder; the last of the test results came today and the news sideswiped us.
ALS. Amyotrophic Lateral Sclerosis. Lou Gehrig’s Disease. Early on in this diagnostic journey, it had been ruled out, by no less than 4 neurologists and a rheumatologist. Nope, not ALS, they said, or multiple sclerosis, or muscular dystrophy. It’s a myopathy, they said. Divided on whether or not it was something called polymyositis, they were. Not great, but manageable. I’d rolled it around my tongue until I was comfortable with it, read the good, bad and ugly about it, joined a support group and prepared to get on with life. A different life, but it would still be a good one. We made plans for retirement—we were going to buy an RV and travel North America.
So when I went to the neurologist this morning, the worst news we were expecting was that the muscle biopsy, the most recent test, was inconclusive and we’d have to repeat it and be back in a bit of a holding pattern.
Then it would be an afternoon with an East Coast friend, and a final offer on the motor home we really wanted and what should we have for supper and all the ordinary things that make up an ordinary evening.
The neurologist was kind, and delivered the news sensitively. I don’t know if it made a difference. I felt my husband’s hand on mine, felt the sharp intake of breath, felt his body start to shake. It wasn’t something he’d typically even be in the office for, but he was anxious to hear that definitive result and I was glad he was—not for me, but because I couldn’t imagine telling him this news myself. I cried, and asked how long although I knew the doctor couldn’t give a number and I knew that ALS patients average 3 years post-diagnosis, one of those random facts retained from reading about a well-loved city councilor who’d succumbed to the disease years before.
The day, the day that was to be such an ordinary day. How does one describe the day they receive a death sentence? Not one glimmer of hope (well, there’s Stephen Hawking, but I don’t think I have the brain power because surely that’s what powers that man), not a chance this time of a differential diagnosis. He’s sending me to see an ALS specialist in Vancouver (“he” being the neurologist, not Hawking); he said “I hope I’m wrong” but I know he cannot be, the science is there. The ALS specialist visit is for the drug trial, the drug that may help maintain a better quality of life in these early stages. That’s all.
The day, the day that was to be such an ordinary day. It’s passing in a haze, a jumble of emotions. Angry, angry “they” said no it couldn’t be this horrible disease. Angry, angry at ourselves for daring to plan a future, as though planning could tempt some fates to punish us for our excitement. Sad, so sad. So many tears. So many “I love you’s”, as though the end was tomorrow. Our dreams crumbling around us, no more than dust on the baseboards.
And the calls, the calls to family and messages to friends. To my father in Newfoundland, a taciturn man not given to displays of emotion. He broke down, crying, talking about how I’d been sick as a baby and had something referred to at the time as a “second lining” in my stomach, and I’d passed it while in his arms and he knew I would be okay and he wished he could just tear this sickness from me now.
I’m exhausted, but afraid to close my eyes because when I wake up, I have to face the reality again. I’m focused on keeping it in the forefront, lest I somehow forget, even for a minute, that my life is irrevocably changed. I see the heartbreak in my husband’s eyes, and I am afraid for him and wonder what he’s going to do now. If things progress as expected, his retirement will be celebrated with my death. Our Newfoundland dog is ten. From a very long-lived line, he may actually outlive me. Those are the things that banging around my brain. I am sad. I am afraid. I have so much left to do. I want to finish my horror novel. I want to finish a couple of e-cookbooks I’ve been working on. I want to finish a lot of things. Reality is hammering away as I struggle to surface from the surrealism of it all—forget those season hockey tickets. Forget that RV. Forget another orange cat someday. Start counting lasts-last time to visit out-of-town friends. Stop thinking about the next-the next house, where we’d live once our traveling days are done. I’ll die in this one. Down another rabbit hole-I won’t die in this house, I’ll die in assisted living, in a hospice, with my body twisted and ravaged by disease. How long will that take? How much can I take?
And the question yet to be answered, the biggest question. I’m not scheduled to die tomorrow. I have a few years. That can seem like an eternity, it can pass in a flash, but it’s still the same amount of time. I know that in the next few days I need to unfreeze myself, to make the most of what time I have, no waste.
And there’s the question, the one yet to be answered: How do I live while I’m dying?