Next week a surgeon will cut into my husband’s abdomen. He’ll put a tube down Chris’ nose and blow up his stomach like a balloon, and then he will slice through it and stick a tube from the outside in, blow up another little balloon in that tube so it doesn’t come out of Chris’ stomach, stitch around the opening in his skin, and, just like that, Chris will have a feeding tube.
Next week we gain some things — a better quality of life for Chris, no more worry about him losing weight and less worry about him choking or aspirating and getting pneumonia.
But as the four of us sat around the Thanksgiving spread at the dinner table last night, Chris coughing on the one bite of roasted carrot he tried to eat, Willa rubbing his arm, Cohen crying into his dinner plate and me feeling sadness down in my bones, it was never more clear that, next week, we lose some things, too.
This week I have been grieving those losses. I have been dragging myself through existence, forcing one foot in front of the other.
This week, I am shedding parts of this life I love.
With a deliberateness I’ve grown used to, I will lift them from my heart with great care and turn them over in my hands — these things that might be small in the scheme of it all but are dear to me nonetheless. I will look at them and be grateful for them and cry for them. I will spend time with them, and then I will start moving on from them. I will separate these parts of me from my present self, and, as I start to reimagine my life without them, I will mourn.
I will wrap them in my love and put them away, up high on the shelf of things I have loved and lost, things time or fate has taken from me, things I will never forget but have to let go of in order to keep going.
I am so careful in this carving away, diligent to take only what’s necessary right now, leaving behind as much as I can, even if that means repeating this process again tomorrow or next week or next month.
Taken from the whole, these parts of me are so fragile, and their excision leaves me feeling the same. Each time, I emerge from the shedding a bit more broken, a bit more fractured, another piece taken from the whole of me, another part of my life tucked carefully among the remnants of my previous self.
Sometimes I set aside time for this and other times I move through my life, grieving in motion. I look up from the bathroom sink and see my own sad eyes staring back at me in the mirror. I cook dinner as my tears fall, sizzling in the frying pan. I get in the car after going to the grocery store and find I’m squeezing the steering wheel so hard my hands are shaking. I start laughing, really laughing, and then my head catches up with my heart and suddenly I feel betrayed by my own happiness.
Chris’ swallowing started changing in August, and last week, just three short months later, I stood in a room with a speech language pathologist and an X-ray technician, watching Chris swallow different consistencies of food and drink mixed with barium so they could see what was going wrong.
What was going wrong, I could tell immediately, was everything.
I saw her body language. I heard her quiet mutters. I saw the water, the nectar, the pudding, sloshing down his throat. I saw so much of it staying there even after his swallowing had finished. She turned on the microphone and spoke into the room where Chris was failing a test he could not control.
“That’s it,” she said. “Thanks so much.”
She stood from her chair and said to me, “It’s too dangerous for him to swallow any solids. I can’t take the risk he would aspirate the barium.”
We moved into another room, and she showed us the images. Every part of his swallowing is affected, she said. I’m putting in an urgent request for feeding tube placement, she said. His tongue is weak, she said.
For the first time in more than a year, I cried in one of Chris’ appointments. She got up to look for tissues. Chris squeezed my hand to reassure me.
“It’s ok,” he said. “I’m ok.”
I heard myself apologize for my tears while in my head one phrase played on a loop — with the tongue goes the speech, with the tongue goes the speech, with the tongue goes the speech.
I cried all the way home, and then I cried for an hour once we got there. I splashed water on my face, went to get the kids from the friends who were watching them and managed to get there and back before I retreated to my bathroom, locked the door, slid onto the floor and cried again.
All day, I cried for his voice, for his laugh, for the comfortable cadence of conversations with my best friend, for the stories he tells, for how he sounds when he tells me I’m beautiful and for the way his Boston accent, lost long ago after living in Syracuse and St. Paul, reappears when he’s had too much to drink .
His voice, I thought was the extent of my sadness. The feeding tube we want. We knew his swallowing was bad. We know it will get worse. I was grieving his voice, not his swallowing.
But the next day I was making a taco for our son and warming a tortilla on a skillet. Chris walked by and said, “Oh, that smells good. I wish I could eat that.”
And these other floodgates opened, ones I didn’t know held so much sadness behind them. I had spent so much time focusing on his voice I had missed the growing swell of sadness about food. About cooking for Chris. About having meals with Chris, about watching him enjoy things he loves and making him things he loves. I thought about date nights and dinners out, things I hadn’t realized were changing because we aren’t going out right now, anyway. I thought about all the meals we had shared in our 15 years together, about how we fell in love in quiet conversations over countless restaurant tables.
I thought about how much I love cooking for my family and how that has all changed now. I thought about how much Chris loves good, crusty bread and medium-rare filet and juicy, fall-apart brisket and lobster drenched in butter and fresh sweet corn on a summer day. I thought about how at parties we’ve gone to where they have someone shucking oysters Chris ends up on a first-name basis with them because he stands there the entire night slurping down as many oysters as he can. I thought about how he loves vegetables so much he’ll eat raw green beans and how he devours Sour Patch Kids and Swedish Fish like a little kid and how spicy food makes his head itch. I thought about sharing popcorn with him on the couch and sitting on the porch on a sunny summer night with beers in our hands and taking family bike rides to our favourite ice cream spot.
And then I thought about how at Thanksgiving dinner I told the kids, “This makes us sad, and it will always be sad that Daddy can’t eat food he loves, but as time passes we will get used to it,” and how Cohen, with his glasses lenses covered in tears, said, “I don’t want to get used to it.” And how this all makes me want to crawl out of my own skin because today the skin I’m in feels claustrophobic, like there is no oxygen, no fresh air, and I’m suffocating.
I know that’s not true, that what I really need to do is shed not this skin but this part of me. Because even though that shedding leaves me a bit more fragile, something else happens, too. My other senses — my sense of joy, of beauty, of grace, of love and compassion and gratitude, are heightened. After each loss, I return to a life that is richer, deeper and more beautiful than it was before.
So instead of flailing in my sadness, I will ground myself in it. I will breathe it in and appreciate it and be gentle with it. I will respect it and what it’s telling me. I will let it change me.
Each time I have to cut away the parts of this life that I don’t get to keep, after I have cried until my eyes are swollen and red and I’ve said goodbye to things I cherish, I know I will rise up. And someday soon, once this swell of sadness has passed, I know I will loosen my grip on the steering wheel, take a deep breath and sing at the top of my lungs.
"When the silence isn't quiet, And it feels like it's getting hard to breath. And I know you feel like dying, But I promise we'll take the world to its feet, And move mountains, Bring it to its feet. And move mountains. And I’ll rise up, High like the waves. I’ll rise up, In spite of the ache. I'll rise up, And I'll do it a thousand times again." - Andra Day