#27: Where the Light is

Here is what happens in the darkness – things get lost, go unseen, disappear from sight and so, too, from mind. 

The last many months have been turbulent for me, taxing in ways that are hard to grasp when you are trying to stay anchored during a storm. 

I have been worn down and worn thin by this life, weary of Chris’ disease and this pandemic and, somehow, desperately lonely despite the love within my four walls and outside of them. Sometimes we can be surrounded by love and feel empty. We can mindfully count all of our blessings and still feel only cursed.

I looked for the light, and, even when I could see it out there, I wondered why I couldn’t feel its warmth on my face. After a winter of discontent, I seemed poised for a springtime crisis of faith. 

And then (and here is why we keep going, for the “and then”) the busiest weekend of the year on my hockey mom calendar came. Chris was busy with work. The NHL’s trade deadline was closing in, and so he was in the office all day, every day, the same weekend both kids had season-ending tournaments. In a span of three days, they had nine games between them in opposite corners of the city at rinks more than 40 kilometers apart.

I scheduled rides with friends to get everyone where they needed to be, and I managed, somehow, to be in the stands for 8.5 of those nine games. 

Our 7-year-old, in her first full hockey season, ended the year with new friends, happy memories and a desire to play again. Mission accomplished. 

Our 10-year-old, after a difficult first year of learning positions and changing the way he has to think when he’s on the ice, ended up in the gold medal game. His team didn’t win any tournaments during the regular season and now they had a chance to end the year on a high note.

Chris was at work. It was Sunday afternoon, and the trade deadline was less than 24 hours away.  

“Maybe you can just sneak out for the game?” I messaged.

When I showed up at puck drop from Willa’s last game, Chris was already there, behind the bench. 

The game was close. We were down or tied for much of it, but late in the third period we had a one-goal lead. Then, with 45 seconds left, the other team tied the game. It went to a shootout. We won.

The kids piled on top of each other in celebration. As manager, I made my way over to the bench so I could take a team photo. I stood there against the boards while the coaches handed out medals and watched as my husband, nearly three years since he was given 6-12 months to live, knelt down in front of our son. I saw him lift the medal up over Cohen’s helmet and around his neck. I blinked back tears as he locked eyes with Cohen to tell him how proud he was. 

And suddenly, after months of searching, there it was – the light.

All of the things I’d lost sight of in those dark months came rushing sharply, clearly into view. Chris walked by me as the team streamed into the dressing room, caught my eyes and nodded. He saw it, too.

Chris’ disease is not the quick burst of devastation we thought it would be. It’s a slow burn, and thank God for that, but that doesn’t take away the fear, the worry, the sadness. ALS stalks our every move, dares us to make plans, to settle into a new routine, to get comfortable in a new reality. It’s there, always, working its way through Chris’ body, wearing it down, waiting for its moment to pounce, to expose itself again, to show up and demand our full attention. 

In November Chris went on the road for work. I was nervous about the trip. His boss was nervous about the trip. Chris was not. Before he walked out the door, I gave him one order. 

“Your job,” I told him, “is to come home the exact same way you are leaving us.”

A few days later, I woke up to a text message that started with, “Don’t freak out.”

A year prior, Chris’ swallowing muscles had weakened to the point that he could not eat many solid foods. He was losing weight. He needed a feeding tube. He got one, and life, really, levelled off. We had time and space to adjust to this new normal, to grieve the loss of his ability to eat before another loss of function slammed into us.

A year later, around the time of his ill-fated trip, Chris started having more and more reflux. His atrophied esophagus meant that while getting food down was nearly impossible, keeping food down was becoming challenging as well. 

The morning I got that text from him, I was in Calgary. He was in Toronto during a Flames road trip. The night before, he ate too close to going to sleep and woke up choking on reflux and gasping for air. It was the middle of the night, and he was alone. Within a couple of hours he had chills and was shaking. He felt nauseous. His breathing was rattly. He sent a text to the team doctor and, together, they went to the emergency room.

He had aspiration pneumonia and a blood infection. He was in the hospital for a few days. In Calgary, I scrambled to book a flight, find friends for the kids to stay with and get to the airport. 

Chris responded well to antibiotics and after a few days, we were home. I ordered a wedge pillow so he could sleep on an incline and, one month later, as I packed my bags to take our son to a hockey tournament a three-hour drive away, it all seemed resolved. Until it wasn’t. 

A repeat of the month before left me waking our 10-year-old up at 3 am to ask if he could stay home with his sister while I took his dad to the ER nearby. I dropped Chris off at the hospital, drove home to pack a bag for my daughter, who had planned to stay home with Chris for the weekend but now obviously could not, and left for the tournament at 5 am while Chris was still in the emergency room.

Both hospital stays were brief and neither resulted in lasting damage to his lungs or his breathing. The lasting damage was to my state of mind. 

All I could see was the disease, the injustice, the losses. My mind swirled around the worst-case scenarios. My sleep was fitful, my dreams upsetting. I tried to remind myself Chris was mostly fine, that he’s a miracle, really. We found a medicine that solved the problem causing the reflux and resulting pneumonias. Life seemed to level off again. 

None of it mattered. I was sad and tired and angry. I wanted to be positive. I wanted to pull myself out of the darkness, but self-pity is like quicksand, and I was stuck.

We can search all we want for the light. We can’t always control when we find it.

I saw flickers during the subsequent weeks and months. I looked for them everywhere, but it wasn’t until I stood there watching Chris lift that medal over Cohen’s helmet that it flooded in, that I felt its warmth expand in my chest and soften my heart, that it revealed all of the things I had lost sight of. 

The reality of that moment, for me, was stark. 

Chris is supposed to be dead, I thought. I am supposed to be standing here watching some other dad put that medal around my little boy’s neck. I am supposed to be a widow who has to find a way to console her son when he climbs into the car, his cheeks still bright red, his hair still sweaty, and breaks down because his dad didn’t live to see that tournament win. 

Instead, Chris looked into Cohen’s eyes and told him, “I’m so proud of you. I loved watching you play this season.” Then he gave me a hug, hopped in his car and went back to work. 

This past weekend, more than a month removed from that day at the hockey tournament, the morning sun glittered on grass slowly turning green, and the birds chirped. The world outside brimmed with the distinct hope springtime brings. 

I stood at my sink in the bathroom, brushing my teeth. Chris stepped out of the shower with a towel wrapped around his waist and looked at himself in the mirror. He studied his chest, his arms, his shoulders, his biceps. I watched him, my eyes scanning his body quickly, covertly, as I’ve learned to do.

There was no vanity in him standing there, analyzing his physical self. There was only searching for new signs of his disease, of his mortality.

“My shoulders,” he said, turning his eyes to me.

“I’ve noticed that,” I said, referring to the bones in his shoulders that have become more prominent. 

I long ago made the decision to keep changes I see in his body to myself. There is no point, I’ve thought over the past months as I’ve rubbed lotion onto his back and shoulders, no need to rush him toward the inevitable. 

There is, we both know, no hiding from this. 

We stood there, looking at each other, thinking about the atrophy in his shoulders, about the slow and slight weakening of the muscles that control lateral movement in his remaining functional hand, about this disease that humbles us and terrifies us and breaks us, over and over again.

“I’m so sorry,” he said. “I say these things to you, and I scare you. I make you worry.”

“Stop,” I said. “I’m OK. You are OK. We are OK. We will be OK.”

There is fear in the unknown, yes. There is worry about the logistics of a life in which Chris is more disabled, a life in which he is no longer independent. In the depths of that fear, I worry am not strong enough for this disease, for this life. 

What I am learning, what I forget and fight against and then have to relearn again and again, is that the fear is useless.

Last week, as I raked up dead leaves and grass in my backyard, I listened to author and Franciscan priest Father Richard Rohr on Brené Brown’s podcast, Unlocking Us, and one thing he said stopped me. Faith, he said, to so many people, means certainty. I dropped the rake, walked inside and searched for a pen. I backed up the podcast and listened again, writing down his words. 

There it is, I thought. That’s my problem.

What I have is beautiful – my family, my kids, my life, my friends, a yard that needs raking, a body that moves at my will, a husband who has defied all the odds. 

What I want is certainty – a guarantee that I can keep all of those beautiful things, just as they are, forever and ever amen.

In that way, I am no different than anyone else, but my ability to ignore the universal truth that in life there is no certainty was shattered the day a doctor told us Chris had ALS. My beautiful things became more fragile, my grip on them more tenuous. I hold them close but with gentle hands, and, every once in a while, I am broken by knowing that I cannot will my love for my people into assurance of their safety, their health, their existence in this world. 

They are not mine to keep. They are mine to appreciate, to love, to care for, to celebrate, to enjoy, for as long as I have them. Then, someday, they will, perhaps, be mine to grieve. 

I cried standing in front of Chris in the bathroom that morning, and then I hugged him and we went about our day. I took the kids to baseball. He went to work to get ready for the first round of the NHL playoffs. His friends came over for a poker game, and we shared stories and jokes and laughter. 

I went to bed that night with my husband next to me. When I opened eyes my in the morning, he was still there beside me, still sleeping, still breathing softly. I heard the kids downstairs, dropping bagels into the toaster, warming up breakfast ham, talking and giggling together. The sunshine peaked through the blinds. Chris’ eyes fluttered open. We talked quietly and listened to the kids. He got up, went downstairs and made coffee. 

I lay in bed and marveled at it all. 

What I have, I thought to myself, is beautiful. 

Of that I am certain.

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