The house is quiet and dark. The window is open, and the breeze is cool on my face. Summer is giving way to fall, and I pull the blanket up to my chin.
These nights, when the air is crisp, have always been my favorite for sleeping. But this night my mind is restless, and it won’t quiet.
Willa wakes up and wants to cuddle. I squeeze her tiny body, take off my sweatshirt and hand it to her. She wraps her arms around it and buries her face inside. I stop in Cohen’s room and brush the hair from his face and kiss his forehead. And then I go back to bed. I climb under the covers, and I kiss Chris goodnight once more. He tells me he loves me and quickly his breathing turns steady and rhythmic.
I stare at the ceiling and listen to Chris snore softly and think about being sad.
I am sad. I have been sad for a long time now, but in the last few months my sadness has evolved.
When Chris was first diagnosed I was sad in a desperate, panicky way. The kind of sadness that takes your breath away and sends you spiralling into anxiety attacks, the kind you try to talk yourself out of, the kind you still believe might go away.
Over time that sadness quiets and settles into your bones until it’s a part of you, just as much as the color of your eyes and the sound of your laugh.
This, I have realized, is a sadness born of acceptance.
When I was younger and had never experienced real trauma or loss, I remember listening to people describe how grief never goes away, how your sadness is always there. I remember feeling heartbroken over this notion of abiding sadness. But now I get it. My sadness is mine, it tells my story and holds my love and my fears and my hopes. In some strange way, I actually feel protective of it. It is a part of me.
Now that sadness is my constant companion it doesn’t mean I don’t throw my head back and laugh. It doesn’t mean I don’t play with my kids and love how the September breeze feels coming through the window at night. It means that some days I cry in the shower, and some days everything I do and every experience I have just feels richer and fuller and more beautiful. Most days it means both.
I spent the summer feeling pretty shitty about my sadness. When Chris’ smile changed I felt like, ok, this is it. Now it’s starting — the beginning of the end of my life as I knew it. Last year I talked often to my friends about how, when Chris kept going through all those precious, miraculous months with no progression, we were in a bubble, focused on the present and not worrying about what could be in the future. I worked hard to embrace that mindset, floating along in that bubble where I could let myself believe that ALS might never change our life any more than it had.
And then one day Chris’ smile was crooked, and my bubble burst and I fell, hard and fast, from the high I’d been living on. The bubble was gone, I told myself, for good. Never coming back. Now the hard stuff was going to start.
I’ve been in that space for a few months now. It’s not been a good place to be. It’s full of wallowing and self-pity and anxiety and not showing up for today because you’re too worried and sad about the future.
Then a couple of nights ago, I finally watched “Gleason,” the award-winning documentary about former NFL player Steve Gleason and his wife Michel and their first years after his ALS diagnosis.
I want to pause here and say that if you want to be inspired by the strength and resolve of the human spirit, watch this movie. It’s on Amazon Prime Video and a host of other streaming services. Steve and Michel are incredible people — last year Steve was awarded the Congressional Gold Medal for all he has done to help the ALS community — and you will be better for the perspective they will give you. Click below to watch the trailer.
It took me months to get myself to watch it. I knew it would be hard, like looking into my own future. I sat on the couch next to Chris and cried for the entire 111 minutes. Sometimes hard, sometimes silently, sometimes while simultaneously laughing.
I watched Steve lose every aspect of his physical body. I listened to his speech turn from crisp and clear to slurred and hard to understand to completely gone. I watched his wife, with a newborn baby on her hip, feed her husband and suck the spit and snot from his nose and mouth so he wouldn’t choke on it and try to lift him up when he couldn’t stand and press as hard as she could on his chest to try to help him cough up mucous. I watched her cry. I saw the sadness in her eyes. The fear, the love, the acceptance, the exhaustion.
I saw them become parents as Steve lost the ability to walk and talk and, eventually, breathe. I saw how quickly ALS ravaged Steve’s physical self. I also saw them keep going and keep evolving and and keep loving.
And then I looked at Chris, his body still so unchanged, sitting next to me. I watched him stand up and turn off the television when the movie was over, walk to the fridge, drink a glass of water, brush his teeth, and climb into bed. I felt him put his arm around me and run his fingers through my hair. I listened to his voice comfort me while I cried. I felt him squeeze my hand and kiss my forehead.
And I knew then — we are still in the bubble.
Completely and totally in the bubble. How stupid of me to convince myself otherwise. How selfish, really, to wallow in my own sadness when he is here and doing everything he always could, save for smiling and tying his shoes.
Chris is 17 months removed from a type of ALS that has a 6-18 month life expectancy. He is a miracle. He is a beacon of hope for the entire ALS community. No one, ever before, has had a better shot at beating this, or at least living with it rather than dying from it, than Chris has.
This week was the 19th anniversary of the 9/11 terrorist attacks, and I spent some time thinking about the people who went to work and didn’t come home, the ones who left messages to the people they loved, trying to find sufficient words to say goodbye.
Yesterday, Chris’ mom, Linda, should have turned 69 years old. I thought about everything she missed when she died of suicide that February day almost nine years ago, when her first grandchild was just 6 months old and her second was months from being born. One day she was here and the next day, she just wasn’t.
And, again, I am reminded how lucky I am.
If someday I lose Chris to ALS, we will have spent our time in the present, planning and talking and understanding, grieving and accepting. We will have done it together, before we have to do it apart. Chris will have spent his final years, however many he ends up getting, writing his legacy in the profound way only someone who knows their time is limited can.
We will have made so many mistakes along the way. We will have fought and been insensitive and still hurt each other, but we will have never stopped trying to be better and kinder and more present and more compassionate. I know that no matter how desperate things will have been at times, love will have always risen to the surface.
When I think about my life in 10 years, I don’t know if Chris will be by my side or not, but I do know I will be able to look back and say — that was so hard, but we worked so hard and we did our best. I know that this horrible disease will have served to make our lives more beautiful and more profound.
I also know that in 10 years, in 20 years, my sadness will be there, too. It will keep me company and sometimes hold me down and sometimes propel me forward and sometimes force me to sit in the quiet and feel all of it. It will be there, and I will be grateful for it, because my sadness will be how I know that I lived.
In the words of Steve Gleason, recording himself as he watched his infant son Rivers, now a 9-year-old boy, wiggle around in his bassinet, “It’s not gonna to be easy, but it’s gonna be awesome.”
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By Kelsie Snow
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