We sit together in the neurologist’s cluttered little office. Winter sunlight struggles through mangled blinds, pooling on the tall, teetering stacks of books and papers that cover every surface. It feels like we’re at the bottom of a canyon.
“Did you know?” She says. Halting words, each an effort.
Eight months of injuries, doctors and tests have culminated in a final, devastating verdict. She is dying; slowly cocooned by the creeping death that is ALS.
I will myself to meet her eyes, knowing I’ll see my fear reflected in her face. Helplessness. Hopelessness. I imagine them swallowing us whole.
She struggles to sit upright in the wheelchair. Her face, once bright, is now hollow; her curly red hair, now limp and grey. I help her to sit up, then tuck the blanket around her legs and feet. She’s always cold now.
“I think we all thought it” she says, “we were just afraid to say it out loud, make it real, you know? It was my worst fear.”
“I know.” I close my eyes as the room seems to spin in a single, quiet revolution.
“I hate this,” she says, “if I was a dog they would put me to sleep. I wish there was a pill I could take…” her words trail off.
“Can I please have a hug? I really need a hug.” Carefully wrapping my arms around her, I hold on. We are too numb for tears.
Six months before, she’d developed weakness in the index finger of her left hand. Doctors put it down to arthritis, but within three months, it had spread to her arms, legs, and back. One day she tells me that it feels like she’s forgotten how to walk. She later suffers several catastrophic falls that leave her cut and bruised and terrified to walk, even with a walker. Now, she can’t even defecate without help. Muscle atrophy has left her unable to speak clearly, and swallowing is so difficult that she often chokes on food, making mealtimes terrifying. Her future is crushingly predictable: eventually the muscles around her lungs will fail and she will no longer be able to breathe. The cruel reality of ALS means that throughout her physical ordeal, her mind and senses will be unaffected. She will always be completely aware of what is happening to her body, able to feel everything, from the constant cold in her immobile limbs, to the aches of being unable to change her position.
My mother is an amazing human being. She experienced an often terrifying childhood in war-time England, survived Scarlet fever, endured the grief of losing two children to late-term miscarriages, suffered spousal abuse, was divorced twice, and yet despite so many tough experiences-perhaps because of them-she truly appreciates the good in her life. She doesn’t think of herself as a victim; she is a fighter, proud of who she is and all that she has overcome and accomplished; travelling the world, raising her children, starting new careers.
She is a gutsy, compassionate and wonderfully funny lady. …
Now, all she wants to do is die.
ALS has stolen her mobility, her hope and worst of all, her dignity. Her doctors expect her to fight, but never once ask her what she wants, focussing instead on extending her life: prescribing breathing machines to push air into her lungs and feeding tubes to push food into her stomach. They don’t seem prepared to deal with a patient who didn’t want those things. My mother doesn’t want those things. She simply wants to die, at a time of her choosing, at home, with her family around her.
If I can do nothing else to help her, I will try and give her the dignified exit she has asked for. She deserves nothing less.
In my search for options, I learn that because assisted suicide is illegal in Ontario, the only other options for terminally ill patients who want help to die are barbaric at best: refuse food and water and essentially starve yourself to death and/or refuse a breathing machine until your blood oxygen level drops so low that you suffocate.
In the end, my mother makes the only choice available to her. She chooses to refuse.
In the days that follow, despite everything she has lost, the reality of having made her own choices, in having had that final and crucial say in how her life would end, in regaining some of the control that this horrible disease had taken from her, she has
reclaimed her dignity.
On the last day she was able to communicate, my husband and I are at her hospital bedside trying to be upbeat, hoping she won’t realise that we are hovering; helplessness and despair radiating off us in waves.
“What did she say?” My husband asks. Mum’s speech has been reduced to grunts, eye rolls and weak movements from her valiant right hand.
After a moment, I realise that she is saying “Bugger off!”
In disbelief, I meet her gaze and see her eyes twinkling with unexpected humour and in spite of it all, I begin to laugh. I understand, you see. I understand that we have to stop hovering, to stop treating her like she is already dead. Despite the horror and the helplessness, she wants us to remember that she fully intends to die as she has lived: on her own terms. With dignity.