One year ago today we sat in that small, white room, and an EMG technician whose name and face I can’t remember told us he thought Chris had ALS.
One year ago today I found out my husband was dying.
One year ago today was the worst day of my life.
I’ve often thought about what this day would feel like. Early on, before all the hope of the trial, I thought on this day Chris would be near death. I thought he’d be unable to walk. I thought he’d be breathing through a machine and eating through a tube and a shell of his physical self.
I thought how hard it would be for him to be dying during the summer because Chris loves summer. To be sick and dying and trapped in your body when the sun is shining and the birds are singing and the breeze is sweet and the grass is green and needs cutting — something you love to do — would be an extra degree of cruelty.
Later, when we knew the hope of the trial but also knew Chris had a 1-in-3 chance of getting a placebo for the first six months, I wondered if he did make it to one year, what would he have lost? How sick would he be? Would he want to stay?
In our most desperately sad moments I managed to tell him, through heaving sobs, tears pouring down my cheeks and soaking my lap, that while I just want him here and it doesn’t matter to me what that looks like, I will understand if he ever gets to a place where he just can’t be here anymore.
And then, when we started to believe we were seeing results, when we started to think he was getting the drug and that it was working, I started to think we’d get another summer. I thought how I’d buy him a new bike and the four of us would ride through Confederation Park and stop at the playground before turning for home. I thought how we’d bike down to West Hillhurst and get ice cream at Made By Marcus and lie in the grass together. How he’d mow the lawn and pull the weeds and wash the cars and at night after the kids fell asleep we would sit on the porch in the sun and read and talk. I started to think we would get those long Calgary summer evenings, side by side, and that he would be here and so very whole for at least one more summer.
And then, as the months passed and Chris stayed the same, I thought that on this day we would have a big fucking party. We would celebrate and we would see only positivity in a future that was suddenly, maybe, somehow, ours again to have.
Then, as the calendar turned to a new year and things started to remind us of “last year at this time,” the world got sick and we stayed inside. We watched and read and wondered how it would all end up. And then one day Chris’ smile was crooked. His big, beautiful, brilliant smile.
And suddenly I was right back to day one, in that white room, holding the trash can, ready to vomit from the fear and sadness. And as the party went by the wayside because of the state of the world, so too did our hope that this drug would be our end-all, be-all miracle.
He was sad but he didn’t want the world to know, and at night in bed I would whisper to him all the reasons to hope, to stay positive, to be grateful. He would squeeze my hand and tell me thank you. I’d tell him I love him and roll over and bite my lip and wait to hear his soft snoring before letting my own sobs overcome me.
I was sad, too. Scared, mostly, but also sad. Sad because that smile was the first thing I noticed about Chris 15 years ago sitting across from him at the Whitehorse Tavern in Allston, Mass., when he fumbled his way through our first meeting.
I was interning at the Boston Globe, and Chris had just started covering the Red Sox for the paper. I was there with my summer roommate, Adam Kilgore, who went to Syracuse and so knew Chris from college. A couple of hours into story after story about drunken college exploits and Syracuse’s student newspaper The Daily Orange, Chris had seemingly forgotten I was even there when he looked across the table at Adam and said, “So, Kilgore, are there any hot interns?” Adam, clearly more socially aware than my future husband, put his arm around me and said, “You mean besides Kelsie?”
Chris made a feeble attempt at recovery, but it was no matter — I’d already seen that smile and those blue eyes, and I was a goner.
And so I laid in bed last month, listening to him sleep, grieving that smile and the life and future that I associated with it.
I could stop this post right there. I know I have plenty of reasons to be angry and bitter and just plain sad. I could say this isn’t fair and be done with it.
But that’s not the end of this story, and isn’t that the very reason for this post? Here I am, one year later, writing about my husband so very much in the present tense.
Last week he rode that new bike that I bought him down the hill to have a beer with some friends around a fire. The next day he led us on a bike ride along Crescent Ridge and over the river and back up the hill, then returned to his makeshift office in our son’s bedroom for zoom meetings and conference calls. Last night, before he went out to cut the grass, he gave our daughter a bath and read her a story and tucked her in.
This day might not be all that I hoped it would be a few months ago, but it is so much more than I could have ever imagined it would be 12 months ago.
There might not be a party, and Chris might be the proud owner of a new crooked grin, but one year removed from the worst day of our lives, what we do know is that Chris is already a miracle.
And that his story — our story — isn’t close to over.
And neither is our work.
Sharing our story, all the good and bad, has been a conscious decision. We want you all to see this disease, to learn about it, to know it. We are so incredibly grateful to all the scientists and doctors who spent years developing the drug Chris is getting. But as I’ve said before — only 1-2 percent of all ALS patients can get this drug.
We have to keep raising awareness and raising money to fund research and end this disease. We fight for our family and for all the others, for our children and for their children.
And so on this one-year anniversary of the worst day of my life, I hope you’ll join us in our #TrickShot4Snowy challenge.
Inspired by the late, great Pete Frates, who helped launch the Ice Bucket Challenge, which propelled ALS into the forefront of public discussion for the first time, we are aiming to set another wave of awareness and fundraising in motion by doing something Chris has always been so good at — playing.
We are challenging everyone — old, young, everywhere in between — to show us your best trick shot, make a small donation at www.calgaryflames.com/snowystrong, post it on all the social media outlets you use and challenge your friends and family to do the same.
Together, we can end ALS.