The past few days, friends on social media started posting the first photo they took in 2020 and the last. Some were heartwarming — the friend whose first photo was of her pregnant belly, the last of her adorable baby boy. Others were silly, a play on the stresses of a hard year, and some heartbreaking — photos of people who started the year with someone they love and are ending it without them.
I opened my phone, curious what my first photo last year was. I scrolled back through the months and found it — Chris kneeling on the ice, Cohen and Willa on either side of him, all three of them smiling up at me.
I know I am supposed to look at this photo and feel only gratitude. Because I could have taken that same photo again yesterday if I’d wanted to. I could have walked down to the rink at the end of our street and told Chris to pause his game of shinny. I could have huddled the kids around their dad, and snapped a photo to bookend the year.
I know I should fully feel the miracle of it all. Chris is here. I have him. I hug him. I tied his shoes and sent him off to work this morning, but every time I see a photo of his smile I am reminded of all that we lost last year. A lost smile is not a death, but it is grief and, lately, I’ve been mired in it.
Lately, as the world has retreated again, I have done the same.
My pulling away, my slow spiral into the darkness, has been evident in my terse tone with my husband, my lack of patience with the kids. Anger and bitterness overcame me gradually, like quicksand, slowly pressing in from every angle, suffocating me without my noticing.
I blamed it on sadness. I blamed it on fear. I blamed it on exhaustion. Worse yet, I blamed it on the people around me, the ones I love most.
You don’t know when the darkness is coming for you. Sometimes it’s obvious, barreling down on you like a tornado, fast and furious and destructive, leaving you sitting breathless in its wake, decimated and stumbling through the debris.
And other times it’s the quicksand sadness, and you don’t realize it’s overcoming you before it’s too late. Then you are left fighting to free yourself in slow motion, knowing if you flail you’ll only sink faster.
I can handle the tornados, the days when the sky doesn’t seem as blue as it should, when every step is painful, until you give in and let the storm rage. Those days lift, often as quickly as they descend, and I am well-practiced in seeing them, respecting them and moving on from them.
The slow-burning sadness, though, is harder to spot. My first step into the darkness, I know now, was the day of Chris’ swallowing test. I was so focused on what the test would allow us to do — schedule his feeding tube placement — that I didn’t think about what it would do to me, to him, to us.
I kept sinking as the days passed, as I tried like hell to find foods Chris could eat safely, as I held our kids during panic attacks, as I laid awake at night thinking about what Chris might lose by morning, as I scraped food into the compost that he ate the day before but couldn’t manage the next.
I sank harder still when we walked into the hospital to have his feeding tube placed and they told me the rules had recently changed again, and I couldn’t stay. Deeper down I went as I walked away from him after a rushed goodbye, as I sat in my car heaving with sobs, as I drove home and listlessly cleaned the kitchen before giving up and going back to the hospital to sit in the parking lot for hours waiting to hear if he was OK.
And while I sank, I stopped seeing the joy. I missed the little moments happening all around me, the ones that awaken the heart and shine light in the darkness. In these last weeks this disease has knocked my feet out from under me and drained the gratitude from my heart.
ALS has grabbed hold of Chris’ body and stolen parts of it it away, and it’s done the same to my spirit.
We came home from the hospital with this new life, one that was supposed to feel better but just felt like something I didn’t want, another part of the life I love taken away from me, another change I had no say in.
And then one night I was pulled completely under by a conversation with our son. He was tucked into bed but restless, wriggling all around under his covers, tossing and turning.
“What’s going on bud?”
“Hmm. Seems like something is on your mind.”
“No. Nothing. Well, maybe, I don’t know.”
“I think you’ll feel better if you say it.”
“Well, do you think Daddy will have a long life or a short life?”
I had no good answer. Because that’s my question, too, the one that plays through my mind in every quiet moment. Will Daddy have a long or short life? How long will he be able to drink his morning coffee? How long before his tongue gives out and his speech is slurred? How long before another small change in his body turns into the landslide of loss we experienced after I noticed that crooked smile back in April? How long do I have left in this home that I love so much, one that I would never leave but that cannot accommodate a wheelchair?
And, mostly, how long before the bottom falls out of this new, very tenuous “normal” we are trying to settle into?
I buried my face in Cohen’s dark brown hair, and answered as honestly as I could.
“Oh, buddy, I think Daddy is going to have a long life. And what I know is that we have a very healthy Daddy right now who can safely eat all the food he needs and who can play shinny with you and cuddle you and play video games with you and laugh with you.”
I called Chris up to Cohen’s room, and he tried to reassure us both. But he doesn’t know the answer, either. And so that night, awake in bed, I played back the timeline — in April, I noticed the crooked smile; in July the nasally speech; in August he told me about the double swallowing; in October and November, choking and adding foods daily to the list of things he could no longer eat; in December, a feeding tube.
It was so fast. Fast just like his hand, and it shattered my deeply-held belief that this drug would mean no loss would ever again come as fast and furious as it did with his hand.
I went about my days. I learned how to feed Chris, first with cans of formula, then with food I made. I filled the advent calendars and bought Christmas presents and listened to the music that normally fills me with so much joy. I started journaling in a way I never imagined — chronicling every calorie and gram of protein and fat I was putting in his body so he could regain the weight he lost when eating got so hard.
And then, on our anniversary, I watched our wedding videos and heard Chris’ clear voice and saw his big smile in realtime, and then I was flailing, losing all I’d gained in my slow climb from the quicksand. I wanted to look at pictures of that day and be able to remember all the joy without the pain in my chest that now constantly accompanies it. I wanted to have a nice dinner with my husband, but now he eats through a tube. I wanted to toast with a glass of good wine, but even that has become hard for him.
I wanted our life to be easier. I wanted to feel less helpless. I wanted to silence the low hum of sadness constantly playing in the background of our life.
This isn’t the journey we hoped for on that freezing-cold Minnesota day 13 years ago, when we promised in sickness and in health without understanding what it could mean, when we rode the high of love untouched by tragedy. That girl in those wedding videos had no idea. She didn’t realize what was coming, how strong she’d have to be, how much life would hurt, how little say she would get.
I watched her smile and laugh and look at him, and I remembered who I was all those years ago when we got married. And I thought about who I was in the days after Chris was diagnosed, and who I was a year ago, six months ago, last week. I remembered the things I’d written down and the things I hadn’t. I remembered all the hope and all the sadness. I remembered how this has all felt. And I realized that in the last weeks, as Chris’ swallowing went from difficult to impossible, as he had a tube jammed into his abdomen, and I started feeding him through a syringe, and our life shifted, yet again, in a way I never asked for, that I let ALS take the one thing I can control — my state of mind.
Because here’s the truth — being positive is hard work, choosing joy is hard work, optimism is hard work, hope and gratitude are hard work. And I have been too tired, too distracted by just surviving, to do that hard work.
One day, hopefully soon, I’ll wake up and feel just a bit lighter, but until that day comes I will remember who I am — a person who chooses love, who sees the joy, who feels the gratitude. I will remember that when this darkness starts to lift, I will pull myself up again.
On that day I will open my eyes and look at him next to me in bed, and my heart will swell with the gratitude of having him rather than crumble from the fear of losing him.
Soon, I will look at him and think only — he’s still here.
He can still hug you and hold your hand. He can still laugh with you and pick the kids up from school and watch movies with you. He can kiss your lips and rub your back and push the hair from your forehead in the morning.
This year, just like last year, he is still here.
After a year that took more than it gave, he is still here, and that’s more than enough.