The Art of Dying in a House Full of Love
Updated: Mar 1, 2022
The Loss of Steve
It takes nine months to grow a baby, start a life, and braid the threads of personality and the intricate inner workings of a human being. I've talked about how Steve's ALS journey was akin to a fatal car crash, but rather than dying instantly, the impact on his body and brain lasted nine months. But now, I look at it differently. The last nine months have been his reverse-birth.
Tuesday, January 25th, was a flurry of activity at Cory and Steve's house. People were coming and going; friends brought food, wine and hugs (Mike and Teresa, Mike in an apron carrying a tray of food as he has done every Tuesday for months). We had just moved Steve up to their bedroom the night before. Good friends and neighbours worked tirelessly dismantling the hospital bed, hauling it upstairs, and then heaving Steve up in a wheelchair. We took turns sitting with Steve in the hallway as Cory and her designer friend Justine created a perfect little hospice space (if that's even a thing). They had flowers, dim lights, fresh sheets, and a candle that said Balance on it. Steve could no longer get out of bed as he did the day before. Twenty-four hours was a lot in terms of progression. Apparently, de-growth can happen just as fast as growth.
We had entered a phase that was simply about making him comfortable. We were no longer navigating the steps to the bathroom, or to the thermostat (he could still be himself and turn the heat down) or coming to the table for a feed as we did just days before. That morning, his palliative care doctor came to the house. Steve's brother, Kevin, Cory, and I sat and listened to the words: a few days. He hadn't even examined Steve yet but he could see from across the room that life was on its way out. Each of us asked questions. Mine went something like this: "Maybe this is a dumb question, but what does lung failure look like?" And with gentle compassion, the doctor looked at me and said, "He will stop breathing." Right. He will stop breathing.
The doctor then had a few questions for Steve before listening to his heart and lungs. He asked him if he was comfortable, to which Steve drew two thumbs up. We laughed and told the doctor that he had just received the highest level of enthusiasm. We were used to one thumb consistently erecting from the palm of his hand multiple times a day, but two? I so miss Steve’s thumbs up response.
For the rest of that Tuesday, we all took turns sitting with Steve, holding his hand, and patting his forehead with a cold cloth. I don't think any of us really thought it would be that night, but when can one ever know the exact moment a breath will not repeat? We can't.
But like when a woman's water breaks before a baby's lungs fill with air, a person close to death shows us that the inevitable is close. None of us are medical doctors, so it was up to google, the memory of doctor visits, our 81-year-old retired nurse aunt, and pure instinct. The last thing I said to him was, You're okay, we're all here. You're okay.
If Steve read this, I know that he would say that I'm writing his story like a dramatic thriller. He'd tell me to chill out and tone it down. But in fact, he incited drama everywhere he went. Drama can be a good thing. The kind that pulls you in and wraps you in a bear hug with strong hands and a kiss at the nape of your neck. The type that lures the attention of an entire venue to watch him dance in the middle of the room. The kind that produced deep-fried turkeys every year to which he'd yell: "Well, alright!" as he presented the bird on a platter. His voice, body, and spirit were show-stopping whether he was making a toast, telling a story, or playing air drums to Temple of the Dog.
His disease was rare, and it was dramatic. The speed with which it took to take him down was dramatic. That Tuesday was dramatic. His best friends, Wightey, Brownie, and Rusch arrived from Ottawa with Wavy Lays and Chablis for my sister. They had barely dropped their overnight bags before I rushed down the stairs, yelling their names (they do have first names) to come quick.
I watched as Cory held him, kissed him, and told him how much he was loved. We ran from room to room to check on each other, to make 100% sure Cory and Steve's four kids were okay. We shared the experience of his departure through incredibly tight hugs and unabashed tears. His brother Billy and his wife Sheridan, his brother Kevin, my brother Scott and his girlfriend Marisa, my aunt Aud, and my husband Gary are all huddled nearby. It was dramatic in how deeply connected it made us all. The next morning, sheets and blankets covered every couch in the house (another BFF, OB, had arrived from Vancouver late at night) as more family trickled by the hour.
He connected us as he connected with people his whole life. Since Steve passed, I have received messages from nurses who gave him Radicava this past summer; one who told me that he impacted her life unlike any patient she'd ever had. RBC bank tellers grilled Gary as he made a deposit a few days after Steve passed, "What happened, how did it happen, when exactly? How is his wife? The kids?" I've had DMs from people all over the place with stories and outpourings of sympathy for a world a little less bright without him in it. He connected to extended people in the same way he did with his best friends. He spoke to Brownie on the phone every single day for years, giggling, crying, whatever the moment demanded. He was deeply, genuinely interested in the human experience, which made him a good listener and a big talker.
With me, though, he always knew the information. Cory and I have been connected at the hip and heart since our mom died, and when they fell in love, Steve knew that I was a package deal. It makes me giggle to think that he struggled territorially to give me a spare key to their first apartment. And because Cory and I were so close, Steve and I didn't necessarily need to establish our own thing. There was love and respect, no doubt, and pure fun and aligned outlooks, but it was more of, "I already know everything, so, if you need me, I'll be over here." That was until this disease rendered him vulnerable, and he let me take his hand, kiss his cheek, and care for him in whatever way my sister asked me to, for months. It was like all the admiration we'd always had for each other was in a bottle of chardonnay, and one day, we popped it and got drunk on how much we could be mutually vulnerable, like real blood family.
Steve's actual blood family is massive. And Irish. And fun and beautiful, and they lost their youngest sibling. I think about his mom all the time. She has outlived her baby.
I'm sorry, Steve, but that IS dramatic.
You know it. I know it.
So, like when a baby is born, we cry and rejoice with waves of emotion. Sometimes we do the same when someone passes. The night Steve died, the crying was a given, but the rejoicing was an unexpected sidebar. Our celebration was the inevitable response for having ever known him at all.
Steve, you went out as you danced at weddings; you hypnotized the room to your gaze, taking our breath away as you drew your last one. I can safely say none of us will ever be the same.
How dramatic is that?
Stevie's crew watching over Cory for Steve.