A text from David in late October:

Bad news. Some of the rain is coming in the basement.

It had been pouring and the wind was bending the trees sideways. We had a trip planned and thought, well, leaks are a pain but at least we will be out of town while things are repaired. We texted our neighborhood handyman and asked him to open up the wall with the water intrusion so that things could dry out, and scheduled a roofer for the next day.

a depressing picture of the water damaged stairwell in a basement

Spoiler: We are still not at home.

It took a full month for anyone to find the leak. Every day we had more people out to look for the source — a dozen roofers, a few contractors, and, eventually, the architect that renovated our house years before we bought it. Everyone was stumped. I started dreaming about shingles and flashing and insulation.

Unfortunately, while looking for the leak, we found evidence that it hadn’t started with the recent rains. It had been happening for years and that water intrusion had allowed mold to grow in our basement and on some sheathing.

In late November, five weeks after we found the leak, a general contractor and a mold remediator visited together, determined to do whatever it took to find the problem, including taking part of the house apart. That’s when they found the issue — a contractor during the 2017 renovation had cut a corner with some flashing above the kitchen. Finally, an answer.

The repairs and remediation started and were progressing according to plan, but today we found out that the levels of mold in the basement indicate that there is still more work to do. We had hoped to be home by January 15th. It looks like we won’t be back until after Valentine’s day.

Right around the time that we found the leak, the primary schools near us started having more outbreaks. Our region has had short and fairly mild Covid waves so we took Khalil out of school for what we assumed was a week or two to protect his precious lungs.

Oh. Have you heard about Omicron?

And here is the thing. We are so very lucky. These repairs aren’t cheap, but we can cover it, even with the unknown insurance coverage. We can afford short-term rentals. We have jobs that allow us to bounce around Eastern Ontario as rentals become available.

But, like so many people — basically everyone right? — we are exhausted and sad and just ready for life to be normal again. There have been so many hard days in these last two years. In the hierarchy of pain (including my own), a leaky roof is pretty minor. But still, this is hard.

Back when I was first sick, in 2011, I survived on hope. The hope that as soon as I was healthy, I could go back to my life. I told myself that the pain wouldn’t last. I wouldn’t always ache and feel so fragile. As soon as thinking is natural. It’s easy for David and me to do it now. As soon as Khalil’s back in school, as soon as our house is liveable, as soon as Covid cases are lower, as soon as the first flower comes this spring.

In the hospital shortly after getting sick in 2011

When I was diagnosed with Ehlers Danlos Syndrome in 2014, and learned that I would, in all likelihood, feel very sick for the rest of my life, I had to reckon with the loss of the life I had been holding my breath for.

I grieved and cried and, eventually, started writing a daily reminder at the top of every journal entry.

This, too, is a day of my life.

I watched a lot of bad TV that summer. I curled up on my old thrift store sofa covered in birds and seashells and closed my eyes through vertigo and nausea and, when I could move, taught my big-headed dog, Ben Nevis, how to fetch a sock. And I reminded myself that every silly, painful, nothing day was one of the days of my life.

Laughing with my sister Heather on the bird sofa in 2014

And I think about that now, in these years of hard season after hard season. These are the days of my life.

Many years after first writing that sentence for the first time, I’m looking at the idea with some curiosity. Where do we even get the idea that real life is found in the parts that are easy? What evidence is there in the history of all of the people who have lived that our days should be without suffering? Being a person is living a finite number of days, many of which will have not insignificant pain. What’s the role of hope?

There is a Galway Kinnell poem that I have had taped on my wall for nearly a decade now. It’s called, fittingly, Prayer.

Whatever happens. Whateverwhat isis is what I want. Only that. But that.

When I can release my fixation on improved circumstances, I am able to notice the beautiful moments that I have nearly every day.

It’s not only the suffering that steals my finite time. It’s also the regret and the delusion that life is supposed to be easy. There has to be a way to hate my own pain and the pain of others without expecting it to be different. To rage against the dying of the light without expecting to succeed. To wish that it all hurt a little less but not get stuck in the wanting. To work for justice despite the reality that we will never finish.

Maybe that’s what I can hope for. That I can want what is. That what is good and true and beautiful will continue to be, at least on occasion, louder than what hurts.

Jessica Slice writes about disability, poems, and waterfowl

Whatever what is