#22: Searching for Myself

Yesterday morning I sat in the sliver of sun that streams into one corner of my living room. I wanted to read, drink my coffee, feel the warmth on my face. I wanted to take deep breaths and center myself for the day ahead. I wanted time and space to still my busy mind, so I sat down, pulled a blanket over my legs, took a sip of my coffee, opened my book, exhaled and started to read.

One paragraph later I stopped. It felt useless. My spinning mind knew the stillness wouldn’t last, and it refused to focus. It waited for the inevitable interruption, and within minutes it came. I put my coffee on the windowsill, tucked my bookmark into the same page I’d pulled it from, abandoned my blanket, my sliver of sunshine, my hope for solitude and, in one of the million tiny ways I do each day, myself.

Another day full of tasks awaited me, of helping the three people in my orbit. Most of the time, I go about these jobs cheerfully, knowing I will find space for myself once the back door closes and they are all off to school and work — a walk with friends, some time reading or writing. Most of the time, my jobs as mom, wife and caregiver don’t weigh me down, but for the last week I’ve had a hard time finding myself in my own life.

Yesterday I woke up and laid in the silence of my room as the sun rose outside my window, gradually spilling in between the gaps in the blinds. I should get up, I thought, but then I mindlessly scrolled on my phone for 40 minutes until the kids opened the door and climbed in bed with me, one lying on my belly, the other tucked in under my arm. They were happy and smiling, and outside a beautiful spring day was dawning. I got up, brushed my teeth, washed my face, looked in the mirror and thought — these two things were for you, clean teeth, clean face. These actions, so mundane, such a basic requirement of life, felt significant enough that I noted they were things I did “for me.” That should have been my first clue that I was nearing a breaking point.

I walked downstairs, took out the food scale and the Vitamix and started measuring and weighing Chris’ meals for the day. I pulled my notebook out of the cupboard and calculated calories as I added things to the blender — 180 calories for almonds, 180 calories for hemp hearts, 200 calories for coconut milk, 37 calories for orange juice. Each meal needs to pack 1,000 calories in the lowest volume possible to prevent reflux. Chris gets 3,000 calories each day through his feeding tube and another 1,000 calories by mouth — 4,000 calories required each day so he doesn’t lose weight. I take out the pill grinder and a bowl and crush the medicine I give him through his tube three times a day. Along with food, Chris can’t swallow pills, and it once took him 10 minutes to drink 30 millilitres of liquid Motrin. I pour hot water over the powder to help it dissolve faster. Rushing this step can cause a clog, which means another problem I have to fix, another fire I have to put out, another mess I have to clean up.

“Mom, what’s for breakfast?”

“Mom! Where’s the iPad?”

“Mom, I spilled!”

“Kels, I need a shoe tie!”

“Mom, what’s for supper?”

“Kels, can I get my medicine?”

“Mom, Cohen is annoying me!”

“Mom, can you help me reach this?”

“Kels, can you button my cuffs?”

“Mom/Kels! This is broken/I can’t find that/Can you help me with this/Do you know how to do that/Will you be home for this/Can I go do that/Can I get a quick favour/Could you fold the laundry/Would you do this/We need to do that ….”

When Chris got home from work later that afternoon, I knew I had crossed this sort of invisible threshold that exists when a person spends so much time doing for the people around them that they feel like an afterthought even to themselves. By then I had typed many of these words and, though that often helps me feel better, I couldn’t find the ending and the clarity that usually comes with it. I’d been short with the kids, and I felt tired in my bones, so I knew I needed to do something else. I stepped outside in the bright March sunshine, but as I picked up my rake and started working I still couldn’t find a way to appreciate the day in front of me. Minutes later Chris stood in the open doorway and asked me if he could have lunch, and I sighed. It was not a sigh that said I’m tired or sad. It was a sigh that said I’m annoyed. Worse yet, it was a sigh that said I’m annoyed with you. I dropped the rake in the grass and went inside, obviously stewing and ready to take it out on whatever (the rake) or whomever (my husband) was in my path.

I crushed more medicine, dissolved it in water again and thinned his food for easier syringing. Then I sat next to him at the table, pushing his lunch directly into his belly while I cried. I was not mad at him, but there he was, an easy scapegoat. How much he needs me is not his fault, having one hand and a feeding tube is not his fault. None of this is his fault, and none of it is mine either. That doesn’t make it any less exhausting, any less painful, any less frustrating.

I am not the perfect caregiver, just like I’m not the perfect mom or the perfect wife. These requests, these needs, play on an endless loop in my days. And yesterday, for whatever reason, I hit my capacity. Maybe the slow and constant accumulation caused the burnout, maybe it was pandemic fatigue or caretaker fatigue or regular mom fatigue. Probably it was a combination of all of that. And, maybe, it was also the date on the calendar.

Three years ago today I had a stroke.

I am no stranger to grief anniversaries, but, this year, this marker of trauma has brought existential questions it has not before. I approach most of my emotions these days with curiosity, a quizzical wondering. “Huh,” I find myself thinking after realizing some new emotion is cycling through my heart and mind, “isn’t that interesting?”

Yesterday morning, as I stood at the counter dividing the blender-full of food into three glass jars, one each for breakfast, lunch and dinner, my mind swirled with thoughts about my stroke and my life and my weariness. I stuck my coffee in the microwave for the first time that morning, and I sought out that sliver of sun for a few moments of my own. The window faces the east, and the bit of sunshine that comes in this one small corner of my house each morning is, I know, fleeting. Just like the time I’ll have to enjoy it, I thought, lifting my face to the morning rays.

I sat in the sunshine and thought about my stroke. I wondered why, this year, its anniversary feels so heavy. Last year on this date I felt joyful to be so alive and healthy, immeasurably grateful that the universe spared my life so I could be here to take care of Chris, so that my kids didn’t have to deal with their dad’s illness while grieving the loss of their mom or even the lingering effects of her stroke. I felt grateful that I am healed, that I am better and that I was so lucky. I still feel all of those things, but this year there is another layer — one, I think, of being lost in the fray.

As expected, my contemplation was interrupted within minutes. Willa wanted to play cards, Cohen wanted me to text a friend’s dad to see if he could play outside and Chris came in from the front room to say he was ready for breakfast. I got up, still considering my reaction to this grief anniversary.

I thought about it as I filled syringes full of food and pushed them through Chris’ feeding tube. I thought about it as I reheated my coffee for the second and third time. I thought about it as I played a game of Crazy Eights that I promised to Willa the night before at bedtime. I thought maybe writing would help, so sat down at my computer, and then I thought about it still as I abandoned the cursor, blinking on a blank page, to tie Chris’ shoes. Finally, I sent the kids downstairs for screen time so I could try to pin down all of the thoughts swirling around my unsettled mind.

Now the house was silent. Chris was at work, the kids were downstairs immersed in their own distractions, and the quiet served to amplify my thoughts. The low hum of curiosity that had accompanied my morning tasks was replaced by a steady drumbeat of questions, by a clenched throat and burning eyes.

If I am silent about this anniversary, I wondered, will it pass unnoticed? Has my trauma, my own reckoning with mortality, become a non sequitur, forgettable in the midst of Chris’ illness? From there my mind jumped — have I become forgettable in the midst of Chris’ illness?

“What are you doing for yourself?” friends ask. “What does self care look like for you?” my therapist wonders.

Where am I in this life? How do I find myself? How do I protect myself? How do I hold on to myself?

I typed those four lines, hit return and stared at the screen, tears spilling down my cheeks and into my lap. I often don’t know how to make space for myself, to find where I exist outside of ALS and taking care of my kids and Chris. On my best days I feel honoured to fill these roles. On my worst — like I did right then, in that moment — I feel suffocated by them.

The life of a mother can cause these feelings. The life of a caregiver can cause them as well. What happens when you are both? How do I take care of myself when the reality of my life is that in my family I almost always come in fourth place? How do I make sure I am looking out for myself even as I look out for the three of them? I tried to force an answer, but it wasn’t there. The only thing I felt staring at my screen was the same heaviness that had been weighing me down for days.

That heaviness didn’t let up when I walked out into afternoon sun, and it still hadn’t let up when Chris came home and asked for lunch, when we snapped at each other, both feeling protective and defensive of our own daily burdens.

I finished giving him his food and went back outside. I was, as I told a friend later, taking out all my anger on my yard. “Rage raking,” I wrote to her, “is definitely a thing. I think I have blisters.” Sweaty and still stewing, I went inside to put on short sleeves. Chris was standing at the kitchen sink. He looked up at me.

“Hey,” he said. “I’m sorry for not giving you more grace in that moment. Do you want a hug?”

I nodded yes, sobbing again.

He put his arms around me, and the heaviness lifted some. I wiped my eyes, and we went outside. I finished raking, more calmly this time, and he played catch with Cohen, while Willa stood behind him calling balls and strikes. We talked to our neighbours and the kids rode their scooters. Later, Chris and the kids walked down the street to the field by our house to play baseball with friends, and as I sat on the front step reading I heard Chris yell excitedly. I stopped reading to listen, to be sure I heard right. I didn’t think Chris could yell anymore. He struggles to project with his voice now, so I thought maybe I was mistaken, that it was someone else. I sat there, still as could be, and it came again — Chris’ voice, happy and sounding every bit like him, along with Cohen and Willa laughing, and with those sounds came the perspective that had eluded me for days.

My husband is here. He can take the kids down the street and leave me to sit on the step with my book. He can play baseball. He can yell. He can hug me when I feel sad.

I still didn’t have the answers to those questions that swirled in my mind earlier in the day. I don’t always find a way to take care of myself. I get lost in the shuffle. But as I sat on the front steps, my mind finally quieted and one thing seemed clear — maybe the most important thing I can do, in the absence of the answers, is to keep asking those questions, to keep finding the sliver of sun and lifting my face to the warmth and remembering myself. Because if I do, then that part of me — even if some days it’s as small and fleeting as the morning sun through my living room window — will never go totally dark, will never slip completely away in the busyness of taking care of everyone else, will never be silenced. There will be witness in the asking, the wondering, in knowing that those questions matter, that I matter, that while I am intensely proud to be Chris’ wife and Cohen and Willa’s mom, that I am honoured to be a caregiver and an advocate, that I am not just those things, that I can take up space in this life, too.

I may not always know what that space looks like, but yesterday it looked like grieving a stroke at 34 years old and reflecting on how, when it happened, I naively thought, “This could be the scariest thing that ever happens to us.” It looked like acknowledging the fragility of life and feeling angry at how early and often I’ve had to learn that lesson. It was remembering how scary it was to not be able to stand up for a week, to know I had to leave the hospital with one of the arteries that winds its way through my spine and into my brain still torn, to use a walker for two months and to live with the fact that my neurologist doesn’t know if my previous stroke makes me more susceptible to another in the future.

It was recognizing the fear of something like that happening to me again, now that my husband has a terminal illness, and the exhaustion from the constant hum of worry I’ve had for the last year about getting Covid and dying and leaving my babies here with a dad who is sick and no mom. It was acknowledging the pressure I feel to stay healthy, the anxiety that surrounds any twitch or pain in my body, the tears that flowed when I tweaked my back two weeks ago as I crumpled to the floor and said one thing over and over in my mind — I cannot afford to be hurt.

And, last and hardest for me to vocalize, it looked like admitting the personal cost of this new life of mine, the way Chris’ illness has rewritten how I think about the future, my own personal goals, my plans, my hopes. It was acknowledging the things I’ve already had to give up, to let go of, to grieve, because now I have two life goals that trump all others — keeping Chris alive as long as I can and guiding my children through this massively unfair hand they’ve been dealt.

As I unwound all of this in my head, Chris came home. He was thrilled to be outside playing baseball again, I could tell, but felt dehydrated and needed some water. This time I got up, happily, to help him. We stood on the deck as I pushed water through his tube, and I thought about our winter, about the fear and sadness as his swallowing deteriorated, the worry that his voice would keep getting worse, the adjustment to his feeding tube. It had been a hard many months, but there we were, standing on the deck in the warm sunshine. We made it through another winter, lived as a family of four to see another change of seasons, to tune all four bikes for more family rides, to be playing catch and raking the yard, to have even the luxury of small squabbles healed by strong hugs.

Chris headed back to the field for more baseball, and as I listened to the three of them yelling and laughing, the heaviness of the last days evaporated completely. I took a deep breath of warm spring air and, again, tipped my face to the sun.

There will be more winters, both literal and metaphorical, I thought, but if we hold on, if we keep pressing, we will come out on the other side.

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