I was sitting in bed one morning last August when it felt like the earth shook. Moments later a text from a neighbour explained the cause and had me running to the back window. A massive tree on a lot next to ours had fallen. It completely filled our yard, coming just short of the house itself while destroying our one-day-old shed in the process. The tree also blocked Dion’s only entrance/exit to the house. I felt stunned, especially hearing that Dion’s Personal Support Worker had been where the tree now lay, less than a minute before.
Shortly before the tree incident, workers had begun to fix the siding on our house. It was a job that we weren’t all that excited about needing done, though understood was necessary. We thought it would be done in about a week, maybe two. It was not- mostly because the crew seemingly disappeared. In the meantime, we got someone to clear enough of the tree that Dion could get out and decided to escape to a movie. On our way there I had two difficult conversations on the phone- one trying to negotiate the covering of repair costs to our yard, and one attempting to track down the siding company. As I slid into a seat in the dark theatre, I began to cry.
After the movie, while still in the lobby, Dion looked at me and said he was in trouble. I asked a few questions and understood very quickly that “being in trouble” meant “get me to the hospital”. I got him in the van and drove to the emergency room. Though we didn’t know it yet, Dion had a very serious infection, one that would soon mean he could not move his body at all. Infections are no one’s friend but become especially scary when a person has Multiple Sclerosis. That day, even though he eventually recovered from the infection, was the beginning of Dion’s journey to Long Term Care.
I had what I believe was my first ever panic attack in the hospital that first week of Dion’s admission. It was nearly impossible to talk to the health care team and no easy solution was apparent. I remember repeating the only prayer I could muster, “Speed to save us. Haste to help us. Speed to save us. Haste to help us.” Stumbling out of the hospital, I saw my brother and sister-in law drive by. I hoped they saw me too. Moments later we were on the sidewalk together, me a crumpled mess. My sweet nephew handed me some Kleenex and a bottle of water with concern written all over his face. Together we came up with a next step.
What followed was a series of next steps, which included things like strong advocacy, hard conversations, and relentless prayer. After a battle to get Dion into a rehab program, we got word that he was accepted and to be moved the same day that I needed to get Cate into her new apartment. At the end of that day, I got into the elevator of Cate’s building and began to weep. I cried all the way home to an empty house. I decided to sit in that sadness and not try to escape it. In the morning I took a deep breath, relieved I managed to get through that first night.
There have been hundreds of nights since that first one. As August nears, I can’t help but reflect on this past year. It has been about living into the tension of so many things, embracing change both chosen and not, and weathering a spectrum of emotions. I have watched Dion adjust to Long Term Care, grieved that MS took him there, and felt relief that he has the support he needs. It is not how we imagined life to look at this stage AND it is our reality.
The tree got cleared. The siding on the house was eventually completed. Cate comes to the house with frequency, much to my delight (and actually will be living at home again in the fall until going to the UK in January). You might spot Dion speeding down the street in his wheelchair, as the lack of Covid restrictions means he can get out and about. My therapist continues to help me navigate all the change, as does Dion, Cate, my Dale team and a community of family and friends. Some days I am full of energy and ideas. Other days I am hit with waves of sorrow. Death has hit again and again. So has opportunity to listen to live music, eat really good food, receive and give gifts, and experience the embrace of loved ones.
There is a painting by a friend named Gil that hangs above the piano in our living room. It is pictured below. I stared at it a lot last August, especially as I was pleading for help. I felt like I was/we were stuck in the most turbulent part of the water. I couldn’t imagine the calm. “Haste to help us. Speed to save us”. I can’t claim that the answers came quickly, or that they were the ones I wanted. A way forward was made possible. I do look at that picture now and reflect on how different things feel a year later. There is nothing easy about this road. And somehow, it is also mysteriously good. For that, I am grateful.