Dance Me to the End: Ten Months and Ten Days with ALS

by Alison Acheson

First, Marty. Short, five foot seven, quick on his feet, animated. Charismatic, even. Eyes like Buster Keaton. A musician who made most of his living from teaching guitar, occasionally bass or banjo, to local young people, or older people with ageing dreams, and groups of school kids. He earned the rest of his living with frequent gigs. He was well-loved in our community, and known for T-shirts with funny words or visuals, and quirky shoes.

there’s me. Not so quick on my feet, even clumsy at times, and not so animated. Recovering introvert, in truth. Writer. Writing teacher. Mother of sons. Sister of brothers. Former tree-climber. With a thing for the warmth of fires crackling or hissing at my feet.

savasana,

Shavasana (Sanskrit: शवासन; IAST: śavāsana), Corpse Pose, or Mritasana, is an asana in hatha yoga and modern yoga as exercise, often used for relaxation at the end of a session. It is the usual pose for the practice of yoga nidra meditation, and is an important pose in Restorative Yoga.  Shavasana Etymology and origins The name comes from the Sanskrit words शव Śava, "corpse" and आसन Āsana, "posture" or "seat". The alternative name Mritasana is from Sanskrit मृत mṛta, "death". The earliest mention of this asana is in the 15th century Hatha Yoga Pradipika 1.32, which states in the context of a medieval belief system that "lying down on the ground supine, like a corpse, is called Shavasana. It eliminates tiredness and promotes calmness of the mind."

How much time did I spend wishing things weren’t what they were?

Thank you for being a good friend, for listening and looking right at me. I know there are going to be people in my life who, when I tell them this, I’ll feel energy draining out of me. But then there is someone like you, and I feel energy coming in.

Was the physical so connected to the emotional that my eyes saw differently?

Days of ups and downs. These were just the early days; up and down down became a pattern. A new normal.

“What’s going to become of me?” he asked, for the first time. He would ask this at several points in the months to come.

Less than two weeks in and it was hard to keep secrets, yet hard to share and feel people leaning on me. At that point, it wasn’t so much something I could articulate as it was an awareness of Things To Avoid.

What could life ask of us not to take another for granted?

Later—she means after—all you’ll remember are the good parts

And, she says never turn down any offer of help

I was learning that dying and death does not fundamentally change people.

I so wanted to keep the team together. To play centre as needed, and goalie, and cheerleader. Mixing my sports and metaphors. Didn’t matter. I just wanted the team. But I couldn’t share anymore. In the name of protection, I couldn’t. I had to remember to keep things to myself.

I didn’t ask him why he hadn’t told me. He was giving voice to the things that scared him and had been scaring him, and I didn’t want to say anything that might stop this. I wanted him to feel safe telling me.

But they never told me the things that I learned from that handbook: that the rate of progression was equal to rate of onset (and the onset had been so quick). Or that smaller people (Marty weighed 140 pounds) just don’t live as long. Certain

Only 20 percent of people with ALS have a clear mind. Five percent have outright dementia. Three-quarters of people with the disease are somewhere between.

We were grateful for extensions of weeks, days, even hours, as the disease moved on.

One can need to be, and feel, many things at one time, all the time. I was learning that that is what, in part, causes the exhaustion of caregiving.

Maybe, for him, it was a moment of trying on the reality. I had that sense myself, so often. Is this us? Is this real?

ALS has something like cruise control—it sets it, and moves by it. If it starts out at 50 kilometres per hour, it progresses the same. Likewise, if it takes off at 180 kilometres per hour. Marty’s ALS must have been set at 250.

I came to recognize this theme of people—both in health care and in other spheres—making suggestions. In general, it wasn’t the suggestions themselves that were irritating, but the insistence, evidenced by the repeating of the idea, and the tone of having discovered the source of something akin to cure, when in fact the suggestions were not helpful, or seemed not to be based in our immediate reality. Later, I became better at recognizing genuinely helpful ideas, or at least the people whose thoughts were based in logic and in our needs. I also became better at recognizing the others, those with outlandish ideas, and I would head them off to the side, and leave them there sputtering. But I tried to keep open; after all, I didn’t know what was in Marty’s mind. It was never me dying, and I had to respect that. I was the side-man.

ALS never moves backwards. If you allow yourself—the patient—to experience exhaustion, there is no “resting up” that will restore you. For all intents and purposes, that time is lost. ALS

the part of the brain affected in ALS is often just not a good fit with these medications. The ALS brain does not accommodate many meds, truly, even sleeping meds.

Marty realized that for some months leading to diagnosis, reading had been a struggle of comprehension. But his ears were never not filled with sound.

This element of caregiving—tough conversations—made me ponder the complexity of being care-recipient. Tougher to receive than to give, came to mind.

There are types of work that are significant to who we are, work that simply must be done. Becoming human is a wonder-filled burden we carry. Moving from one age to another. Moving to the end. To leave loved ones knowing they are loved, have been loved, with as clean as possible a pain, might be a significant piece to this human work. Having time with the knowledge that one is leaving this place is some compensation for having to live with that knowledge. Perhaps time can be a gift. Another significant piece of work is to know one’s own soul. I suppose this would be that “Be at peace” or “acceptance,” that people speak of. How important is it? What of Dylan Thomas’s Rage, rage against the dying of the light? It has its place, too.

This is so individual. Loved ones, knowing the dying one is a rage-person, might appreciate the rage, the resistance to going; it might cause them to feel more loved. The beloved cared enough to fight. Rage might be as soul-building as peace and acceptance. The work would be to know one’s self enough to know how to build the soul. Whether by rage or peace, or mix, or... It does seem to me though that, regardless of beliefs of after-life or whoosh, away in the wind with you, there is a need to have—and to hold on to—one’s soul as one slips out of this place to wherever one is going.

naturopath

Naturopathy, or naturopathic medicine, is a form of alternative medicine. A wide array of pseudoscientific practices branded as "natural", "non-invasive", or promoting "self-healing" are employed by its practitioners, who are known as naturopaths. Difficult to generalize, these treatments range from outright quackery, like homeopathy, to widely accepted practices like psychotherapy. The ideology and methods of naturopathy are based on vitalism and folk medicine rather than evidence-based medicine, although some practitioners may use techniques supported by evidence. Naturopathic practitioners commonly recommend against following modern medical practices, including but not limited to medical testing, drugs, vaccinations, and surgery. Instead, naturopathic practice relies on unscientific notions, often leading naturopaths to diagnoses and treatments that have no factual merit. Quick Facts Alternative medicine, Claims ... Naturopathy is considered by the medical profession to be ineffective and harmful, raising ethical issues about its practice. In addition to condemnations and criticism from the medical community, such as the American Cancer Society, naturopaths have repeatedly been denounced as and accused of being charlatans and practicing quackery. Naturopaths are known for their frequent campaigning for legal recognition in the United States. It is illegal in two U.S. states and

Aren’t our bodies intrinsic? Psychological, emotional, mental healing—to my mind—was so connected to our body, that I believed one could work almost entirely on the body, and the emotional would follow. I’d done this in my own life. Just hauled my bum to yoga class for months, not analyzing the process, letting it happen... and it did.

When struggling for life, do you focus on health—meaning, do you listen to every piece of advice or information, and strive to act on it? Or do you simply—if I can say simply—enjoy life, what there is of it, and every last moment? And how might you interpret this? What does it mean, even, to use words like “struggle” and “enjoy?”

fricative

fricative /ˈfrikədiv / ‹Phonetics› I. adjective denoting a type of consonant made by the friction of breath in a narrow opening, producing a turbulent air flow. II. noun a fricative consonant, e.g., f and th. – origin mid 19th cent.: from modern Latin fricativus, from Latin fricare ‘to rub.’

I said that I was hoping maybe it would slow the process, or at the very least, give him a clearer mind—his mind was so foggy, and had been for months, we’d realized. He nodded.

I wasn’t falling apart emotionally. At least not on the surface. Care and lack of care could take surprising forms; I was so aware of that. Again, he said, “No.” Did he understand that it was my way to hold on? He seemed to.

As a caregiver, these two women began to visit my mind, heart, and soul regularly, sometimes separately, sometimes together. In my heavier months of caregiving, they just showed up without being asked, and stepped through the doorway—Martha with a look of superiority in her unflagging energy, and Mary with such accusation: What was wrong with me that I didn’t understand that love—simple love—had all one needed to get through? All you need is love. You don’t understand, I wanted to say. To both.

I found that point of acknowledging that this was an opportunity to show him what he meant to me. It was, to my mind, the highest calling of love: to care until the end. In Leonard Cohen’s words, Dance me through the panic ’til I’m gathered safely in / Lift me like an olive branch and be my homeward dove / Dance me to the end of love.

Let me feel our connection through this. Let me be there when he goes. Give me the good to remember, and to sustain through the inevitable pain. Yes, the panic.

there is so much that children miss—willfully so, perhaps—about adult connections and misconnections.

How could I not have understood those words? How anxious I was, anticipating not understanding. Ole had heard exactly what his dad had said to him. I’d heard mumbled sound. My right ear was partially deaf, but my left had no excuse. Somehow, I had to learn the flow to this, even as I resisted the whole. Could I?

MND handbook,

There are around 5,000 patients in the UK living with Motor Neuron Disease (amyotrophic lateral sclerosis), and many others shouldering the burden of their care. This fatal neurodegenerative disease leads to progressive muscle weakness and wasting, and there is currently non effective treatment. Managing these patients from their initial presentation, through confirmation of diagnosis and throughout their disease journey is challenging for all healthcare professionals. It requires a multi-disciplinary approach involving neurologists, general practitioners, palliative care physicians, specialist nurses, physiotherapists, occupational therapists, and speech and language therapists. Each member of the team has different priorities to effectively manage the myriad of symptoms and other practical difficulties, both emotional and financial, that the MND patient may experience. This book is a comprehensive guide to the complexities of care for the patient with Motor Neuron Disease, written by experienced members of a large care center. It has been specifically written and designed to provide comprehensive, easily accessible advice for all healthcare professionals involved in the care of patients with this challenging condition, including diagnostic, prognostic, physical, emotional, and practical challenges. The entire care pathway from presentation to diagnosis to symptom management and end of life issues is addressed in detail, but in a highly structured, easily accessible format that allows the reader to find practical answers rapidly. This book is an invaluable resource for neurologists (including those in training), neurology wards and specialty nurses, physiotherapists, occupational therapists, speech and language therapists, respiratory and gastroenterology departments providing NIV or PEG support, palliative care teams, and all healthcare professionals with an interest in MND patients.

Each piece of change seemed so big, but more frightening was how “big” seemed to be growing smaller, as each change thrust upon us became part of the new normal. Somehow the big changes had to seem small enough to be do-able.

one of the brew pubs Portland is known for, Burnside Pub.

I hoped they understood. I came to dread the shivery, shaky feeling of meeting people, talking with them, updating them if they felt it necessary, or felt they had a right... their right being their genuine care. I knew that.

What did it mean to be alone? Do we pick up the phone and call someone to join us? Or do we sit with it? Live with it?

I was beginning to feel that in addition to losing my spouse, I was losing a sizeable piece of my self, too. I wasn’t certain what that meant, at that point in time, or for the future. What piece? Maybe some last vestige of Mary? I could imagine her slim form, slipping through less than a crack in some doorway, out to the street, listening to the sound of a violin or a flute, some music only she could hear, and something she knew she needed to follow no matter what else was going on.

I was suddenly aware of a momentary sense of “settled.” These felt to be brief times of relief from the unrelenting change. Then, in the next moment, when I was helping him button his cuffs, there was a second when we caught each other’s eyes, and broke down, and held each other.

So we felt to be emotionally spiking throughout the day, mental convulsions.

Humour lifted us out of our day.

music became my drug of choice for grieving. It has that power.

I needed to be alone, away from him, to let grief pour, and do its ugly and necessary thing. But as time passed, days and weeks, he needed me to be with him more and more.