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I realized then that it was indeed the physical thing of tears.
The ways the body can betray. The ways the body can nourish.
Pieces go. We go in pieces, if we don’t go all at once, it seems. We grieve in pieces, too.
“What is going to become of me? I’m just going to wither away, aren’t I.” I put an arm around him as if that would stop all withering. “I don’t want to wither away,” he said, and then repeated it. “I know,” I said. “I know.”
What were her last words to him. What were his words to her? Was there anything sustaining in those words? Why does she feel she’ll never see him again, never hear his voice, never feel his arms around her? She can’t put hers around him. How can this be? She lies in the darkness unable to move, stricken.
One night, Marty didn’t want to have to climb the stairs at all. So much so that he proposed to sleep alone downstairs. I persuaded him to do one more night upstairs in the room we’d shared for sixteen years, one more night to bring closure. To ponder what it is to walk down a hallway, and climb down stairs one last time under one’s own roof. What is it to know that an entire part of your home will no longer be part of your life? Not sure why I needed that night, and he appeared not to. But he did humour me with one more trip up the stairs.
Was this healthy on my part—this refrain of last time sounding though me? I didn’t know. I only knew I needed to slow time as much as possible, and needed the one extra night. To pause. Some Mary gesture—to sit and listen. Then time again to move with change.
Why was a goal met less so when it was not shared?
it was as if his brain could not keep up with his reality.
How to twin the now and what’s to come. Or how to do one, and then the other.
When should someone give up? When should someone expect others to do for? How judgmental was I being? Should I have offered? Why was there a twinge within me of feeling badly that I hadn’t offered? Why would I have offered? How to recognize when someone needs help. Yet if they ask for it, surely they need it. Where are all the lines between two people, in communication, miscommunication, expectations, helping, being helpless, understanding?
Big Things in relationships: a sense of being seen (do you see me?) and heard (do you understand what I’m saying? or at least hear?). Maybe it was just that.
expiry
expiry /ikˈspī(ə)rē/ noun 1. (Brit.) (Canadian) the end of the period for which something is valid • the expiry of the patent • [as modifier] an expiry date. 2. (Brit.) (Canadian) the end of a fixed period of time • the expiry of the six-month period. 3. (Brit.) (Canadian) ‹archaic› death.
It seemed to answer the issue at that moment; but that moment shifted. As did the issue. Tectonic plates.
Then I experienced the elasticity of love. I needed to see and feel anew that elasticity now. Caregiving demanded elasticity.
I’d believed there was no dignity with this disease—although it is an admirable thing to try to hold on to it in spite of that knowledge. In that lies the dignity. It was necessary to hold on to the belief in the possibility that one could create as much dignity as possible.
It can be hard to read the face with ALS. On every level, my ability to read him was deteriorating, too. When some piece of timing worked, I was grateful.
Tuesdays With Morrie, and I read about an ageing man, academic and pontificating.
Fifteen Dogs by André Alexis.
I had the feeling, at that moment in the specialist’s office, that if I did indeed articulate Option 2, I would also have to explain, interpret, and that would make me the Bad Guy. Did I misjudge? There were so many times I had to be Bad Guy that I was reluctant to blunder into yet another. The task of judging my husband’s cognitive capacity was a challenge. He was not so impaired that he couldn’t feel manipulated, and then resentment. When he embraced something, showed enthusiasm, I stepped back.
When I was tucking him into bed, he said, “I’m scared.” “I’m scared, too,” I said. My mind worked through what it needed to, returning to a passage in a book I’d read, about how to drill down to the nature of fear, rather than simply accepting. About how to narrow the defining of fear, as opposed to some general scary shit thing that would seem too big to live with. “What are you afraid of?” I asked. The question stopped my own tears. “Pain,” he said. That was still too big. But I’d learned not to open possibilities with my questions. I attempted to clarify, beginning with the most innocuous:
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we were now past the point of ever being able to have an in-depth conversation. True it had been that for some weeks now, but thoughts take time to catch up. Which was just as well. I could only handle so many thoughts at a time. At times, many times, I’d like to turn off my mind altogether. I focused on the mental images I played through my mind, reminding myself who he was, the images that kept me human. Midnight picnics would keep us human.
You had to know how such a smile appears to recognize it; the slightest pull at the corners of his mouth. Possibly just in his eyes, and that was how we translated it, his boys and I. My mind was getting used to looking for objects, details, quick stories, to make this smile come. To achieve some light in those eyes.
the constant levels of need, all of almost equal tending, and sorting out that “almost”—what should be done now, what could be put off.
Was I doing what I should be, and was I doing it correctly?
This new thing was just big. It looked as if it had Stuff to Figure Out. Sometimes—more often now—my brain was just tired of Figuring Out.
What are the acts and rituals we have throughout our days that result in a consistent strengthening of our selves? Or at least maintenance? My morning coffee. Thinking time. Walking. Simple things that are easy to take for granted.
I began to talk again, to put our net back in place, with the words I muttered all day, half to myself, half to him. I was mistaken in thinking that my chatter had no value, that it bored him. It was a mistake I would not make again. I had to remind him I’d never let him fall. He was in tears.
Some monstrous pang made me want to crawl back into the minutiae of the day, as it was the only way, too often, to keep moving.
I felt a strange sense of victory—as I did each time I confronted something that terrified me. Even if I’d never had to seriously consider the existence of certain things. Such as catheterization. I knew that if I had, it would have terrified me. Yet there I was, an expert.
He texted, I talked. I asked him what was in his mind, about this. Two weeks earlier, he’d managed to speak and say, “I can’t talk,” as his reason for wanting not to be alive. Now he texted: I can’t do anything.
But still. I couldn’t shake the feeling of despair. Under all was some serious doubt that I had what it would take to get to August. Months of broken sleep. Sometimes I questioned how I was thinking. If I was thinking.
Pretence was a luxury I did not have; in order to care for him, I needed to know what he was saying. My anxiety-stoppered ears needed to hear. What would it take to open them, I wondered, frustrated with myself.
Hurt was what preceded this anger in me. How could I be doing what I was doing, all I was doing, and this was his response?
Again, I was left pondering Marty’s reality, and what it meant to be dying. And the nature of ALS, and specifically, his ALS, with its cognitive impairment. No one explained that, or even talked about it. In Clinic visits, it didn’t come up—not for his perspective, or for my part in his life. I had to feel my way through it.
With many visitors, I came to recognize the role I subconsciously stretched to, that of a sort of docent. Docent of illness, ALS, grieving, mourning. Learning the difference between grieving and mourning helped me to navigate this in a small way. The difference guided me to distinguish between the private and the public.
Dr. K and I talked together in the main room. He didn’t seem to feel it was time yet. He even said something about me not being ready. Was I? Was I not? He advised me, though, not to count calories. Feed Marty when he was hungry. Medicate as much as needed. Now is the time for comfort, Dr. K said.
My own sadness was so deeply in my bones; I knew that someday I would have to try to come to an understanding of what it would take to ease the sadness out of my own self. And what, now, would it take to ease his? It did not seem possible. Those podcasts? The television? Maybe just me staying close by?
The tenderness felt fragile. I found myself thinking in tiptoe, not wanting to frighten it or roar it away. The feeling wrapped around all of us there in that house. In the end, I was glad this had somehow found us, washed over us, taken away some of the shadow stuff in its tide as it washed out and away in the days after he was gone. But still, the shadows were there, the sadness. The sadnesses.
To have some grace. What is grace? I grew up with the word. When I let my gut define it, I feel that grace is an openness, a softness, a kindness. Something merciful. There’s another good word. Dictionaries use the word “unmerited” to describe the definition that is concerned with grace as divine assistance. That word makes me pause, because it takes “grace” to another level. Unmerited. To me, that speaks of reaching more deeply even into whatever resources I may have had and not had. I did my human best. But it was lacking. I knew that. I like to think sleep would have helped, that it was
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How did I grow so overwhelmed that I couldn’t come up with this most obvious boundary? The sense of being overwhelmed cut off so much rational thought—even the most ordinary.
I’m being facetious because humour is necessary to my well-being. But really the ability to take on new roles is imperative—to slip in and out of either Martha or Mary and to suspend judgement on which is more significant or needed. Maybe there’s even a beauty or a particular love to ass-wiping, something I’ve missed.
I scribbled words in the middle of the night, as an image of childhood musical chairs came to me: you are left holding in your hands whatever you had at the moment the music stopped. Whatever you have built of your life at the moment you receive diagnosis, there it is. Your basket of food with which to create your last feast. You can’t go back into the garden to gather more. But out into the wilderness. That’s how it seemed to me. We collect experience, we connect with others, we build laughter and soul and home—so that when we need a foundation and a shelter, it will be there for us. But if
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Patti Smith
Patricia Lee Smith (born December 30, 1946) is an American singer, songwriter, poet, painter and author who became an influential component of the New York City punk rock movement with her 1975 debut album Horses.
Quick Facts Background information, Birth name ...
Called the "punk poet laureate", Smith fused rock and poetry in her work. Her most widely known song is "Because the Night", which was co-written with Bruce Springsteen. It reached number 13 on the Billboard Hot 100 chart in 1978 and number five in the U.K. In 2005, Smith was named a Commander of the Ordre des Arts et des Lettres by the French Ministry of Culture. In 2007, she was inducted into the Rock and Roll Hall of Fame.
On November 17, 2010, Smith won the National Book Award for her memoir Just Kids. The book fulfilled a promise she had made to her former long-time partner, Robert Mapplethorpe. She placed 47th in Rolling Stone magazine's list of 100 Greatest Artists published in December 2010 and was also a recipient of the 2011 Polar Music Prize.
“Love each other, motherfuckers!” Everything depends upon that, and maybe that alone, at the end of the day. Forget the white chickens and the red wheelbarrow. It’s not an inactive or quiet love. There’s an active doing urgency—even anger—to Smith’s words. Love one another so fiercely it begets its own energy.
I told him I’d talked to an estranged friend. That the friend had shared how much he’d cared for him. I told him the plans were going all right for the service. I told him we’d be all right. We really would be. (Would we? I questioned.) Really, we would be. I told him I loved him. I told him his voice and words would be with me.
That’s when I realized: My spouse was gone. But my marriage was still with me. My marriage was with me until I decided it wasn’t. That was in my control. This thought strengthened me. It hadn’t come to me before, not like that. Would the thought have come to me, without pushing myself to see him like this? Perhaps not. I have discovered that when I pushed at life, things opened in strange ways. I did not know that before all this. Application!
I was so aware of the difference between a grieving person who has lost a beloved suddenly, shockingly, and someone like myself, who has already been grieving for months, who has had more sleep in the past three days than in the past three months, who is no longer in a state of panic.
I feared touching the chunky plastic of the shower chair, but I did; how I’d wrestled with that damn thing, how often it had had me in tears. I could still see my husband’s thinned body on it, his deflated muscles, the paper thin of his ass cheeks, his slackened face, smile gone into lines, lines pulled. But without that chair, all would have been harder. The chair had allowed him to lie back, to sink into it, and have those times of some pleasure-of-sorts. Moments of something that looked like peace. As I said goodbye to these pieces, I attempted to imbue them or bless them or... there was no
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Now life would go back to change at its usual pace, which was, for the most part, much slower. The tortoise is always the happier of the tortoise and hare. But it was forever changed.
