unravel

What I realize today, this morning, is that the struggle of this year has been the way in which it all continuously unravels. Think of a beautiful rug or tapestry or canvas art you have worked hard to create. It has required dreaming and imagining, re-envisioning, and effort. It has taken tears and sweat and a part of your heart to create this wonder, and there is pride in its replication of all you hoped it would be. But then, this. The unraveling. It starts with a a single thread, inconveniently out of place, right at the edge of all that beauty. And despite the effort it required to create that masterpiece, it barely takes any effort at all to simply tug that single thread and watch the image dissolve. Disappear. Into…what?

Nothing. Gone. A memory faded, distorted.

That’s what this year has been. That’s what this year has done.

Unraveled.

A year ago yesterday we got the test results. Positive. And there was enough shock to catapult us well into 2020 without really addressing the implications. I know a part of me started a mental countdown in my head, with a close eye on his father for more signs. I started a spreadsheet, hilariously enough, thinking it would provide the smallest sense of control, being able to track his dad’s symptoms and his age at their onset. “53 y 2 mos: still employed, cohesive, coherent;” “53 y 8 mos: still employed, repetitive phrases ‘Look, okay…’”

We gauged this timeline against other data we had. His uncle, afflicted by the same gene mutation, still alive. His paternal grandmother, the carrier of the mutation, didn’t die until she was 63, but even then it was from pneumonia.

And a year ago, as we were watching his dad disappear, we appeased our fears with faith that thirty-plus years could be enough. For science, for research, for a solution, for us. Thirty-plus years could change the outcome of our tapestry. That’s even what they told us at Columbia. Maybe they’re trained to offer false hope, but we took it like it was genuine. “Science can accomplish so much in so much less time than before. Look what we did in the last 20.”

In the last 20 years, though, science never had to combat against a pandemic. Research never had to work around social distancing and travel restrictions.

Unraveled.

Something about the way COVID shut everything down in March left me thinking, “Does that still count? Does that diagnosis we got still count, if we are going through this now, too?” It’s like the loss of a loved one. The first big holiday you experience without them, you think to yourself, “Well I’m glad we got that over with,” and you forget it’s just the beginning of never having them there again. That’s how I felt with the COVID shutdown that struck in March. “This is miserable and horrible enough to supersede anything that came before it.”

But then we lost Big Mister. “58 y 3 mos: deceased, cardiac event.” And when you take that piece of objective data and add it to all the other pieces, you have a new number. A lesser number. Instead of 30-plus, you’re now talking 24 years and 7 months, to be exact. At least, that’s the number you would have had a year ago. Now you’re talking 23 years 7 months.

Unraveled.

I don’t know how to end this piece of writing in a better place of well being. A more gracious spot of understanding. Acceptance. I remember plenty of times a pastor or mentor or therapist used the metaphor of God weaving a tapestry, and how we can only see the bundled threads, knotted and twisted on its backside, while God is working on the masterpiece on the other. Yeah, I guess if at the end of all this unraveling, you are given a masterpiece, then what does it matter, how knotted the strings are by the end?

It still hurts, though. The knotting. The trimming.

When I look at my husband’s forehead and I know the tau protein is beginning to atrophy behind his brow, it hurts. When I watch him kiss our five-month-old daughter, tickling his beard against her cheek, I catch myself thinking, “I will tell her he loved her so much from the very beginning.”

What do I know? There are daily reminders that life is not granted for more than the day you are given. My son, pretending to be Hulk, resisting nap–this is a reminder. My daughter, smiling at me as I fold the fifty-ninth basket of laundry today–this is a reminder. Mister, telling me to take a bath, enjoy the water, “Do you want a seltzer?”–this is a reminder. Hound, her wet nose against my cheek when I fall asleep on the couch–this is a reminder. We are given simply joys in the midst of what feels like burdening chaos, piles of frayed thread at our feet. We are given simple tasks that bring us back to life because they must be tended to, and our eyes are taken off the thread and brought to the grace of the Weaver. Because to even have been given this burden of love has been a gift from Him. Boy, Baby, Mister, home. Who am I to pretend I weave best?

Unraveled.