Flip-Flop, Part IV: Disease and Its Take-aways
Michael J. Fox once said about his Parkinson’s, It’s the gift that keeps on taking.
The same could be said for Multiple Sclerosis. Like Parkinson’s, the rate of deterioration from MS can feel as torturously slow as Chinese Lingchi, known in the US as the “death by a thousand cuts.” A slice off the nose here, an earlobe there. No functional damage, just a frightful amount of bleeding. But then a nick to the spinal cord and instant paralysis. Blindness from a quick eye-gouging. A strategic thrust to the flank releases the contents of bladder and bowel. After five or ten minutes of this unbearable torture, the victim is mercifully dispatched by a slash across the throat. Those few minutes must feel more like ten eternities.
But from where I sit these days, dying of lung cancer can warp time until it seems to crawl at a snail’s pace. My mother has been fighting it since January and she is still with us, hanging on and hanging in. A month ago she was giving me the high sign to take her out on the patio for a cigarette and a few sips of coffee every afternoon. She used a walker to toilet herself in the en suite bathroom and could eat her meals unassisted. Now she is bedridden with a urine catheter, too weak to feed or toilet herself. Her voice is a hoarse whisper. Her thoughts and words are an odd mix of the real and the imagined. She can only refer to herself in the third person these days.
“Nancy,” she calls out, “How is Nancy doing?”
“You’re doing fine, mom,” we reassure her.
Mom lost her sense of time long ago in tandem with her short-term memory.
“Did I get any pain meds yet?”
“Yes, mom,” we tell her, five minutes after she has swallowed a cocktail of morphine and Ativan. Five minutes later, she repeats the question, and yet again, five minutes after that.
The warping of time agitates her more deeply than the cancer pain.
“Is it Friday?” she asks.
“No mom, it’s still Tuesday.”
She snorts in disbelief. “Still Tuesday? The days are so long, and the nights. What am I going to do with myself all night?”
“You’ll sleep through the night,” we remind her, “you don’t have to worry about that.”
“I’m ready to die,” she tells us, “I’m so bored. But I don’t know how to make it happen. Why don’t I die?” She is surprised to awaken each morning. “Am I still alive?” she asks, incredulous. “Why?” She has begged us to kill her on several occasions. Not because of pain, because her mind is ready to go yet her body is hanging on. We give her Ativan and morphine, and when that isn’t enough to calm her, a Thorazine suppository. When she finally relaxes into it, she says, “It’s all good the way it’s happening,” and drifts off with a smile on her face. The same kind of smile that appears when the nurse arrives with her scheduled pain meds every two hours. My mother, who rarely ever took a pill before in her life, has become a junkie eagerly awaiting her next fix. That makes us very happy. When she’s high on narcotics, she smiles and verbalizes her many hallucinations, laughing at the absurdity of it all. We’re glad she has pleasant moments in this altered state. And I have to admit that we are very entertained by the things she says. I’d never thought of my mother as a particularly imaginative or fanciful person. But ever since the narcotics, I’ve witnessed her sweet, naïve and wondrous take on whatever her mind has conjured. I am like Lewis Carroll taking dictation while mom, like Alice, tunnels through the rabbit hole.
The day before yesterday, mom told us it’ll be one more day. “Then I’ll be with Joe,” she stated. Joe is our late father, whom she divorced in the eighties and had not mentioned at all until that day. One of the nurses advised us to take it seriously, people who are that close to death seem to know when the end is here. But yesterday came and went, as did today. We cried a bit when she said it, but when mom didn't die, we shrugged and laughed. We bounce back more quickly, having become hardened to these false prophecies. In the many weeks mom has been in hospice, the nurses have warned us the end is near several times. From now on, when a nurse takes us aside and whispers that mom has taken a turn, we very well might nod and smile ruefully, but as soon as she leaves, roll our eyes and stifle our snickering. Yeah, not fallin' for that one again, chickie.
It makes me think about all those times the Apocalypse has been predicted, the dates coming and going with no consequence. Not to mention those tender stories about old couples who were married for 70 years dying days or even hours apart, the last surviving spouse poignantly described as having died of a broken heart, willing themselves to join their life partners in the Great Beyond. And then I look at my mother, who is doing a rather dismal job of offing herself through sheer will, or positive reinforcement (“I’m going to die tomorrow, dammit”), or behavioral changes via a cognitive therapy script (If I feel I want to die, and think new thoughts of dying, and behave as though I’m dying, then I will die).
Willing one’s self to die seems to be a purely romantic notion. Judging from my mother’s lack of self-persuasion, dying is just a lot of waiting and wondering with little say-so over when the body decides to shut itself down. It makes sense somehow when I think of it conversely. I never bought into holistic philosophy either, that one can heal one’s self of any illness by nourishing the body, mind and spirit into good health and peacefulness. Whether we want to be healed or want to die, our biological systems seem to have their own agendas.
Today, mom said she would like to be sedated into unconsciousness, she no longer wants to be awake. But considering that she has been taking enough narcotics to kill a draught horse and is still responsive, I have my doubts that it’ll be accomplished.
As for my siblings and me, we have lately begun tripping more lightly down the path of mom’s journey. We now realize what the drug-induced, existential question that mom sends out to the universe is all about.
“Nancy?” she warbles. “How’s Nancy doing?”
And we, chanting like a Greek chorus, know it is our job simply to reassure her that she is traveling her path with grace and dignity. “You’re doing just fine, mom.”
And she is.
Have you ever experienced any of the following financial struggles due to your MS?