Downdate

A word I just made up. An “update” includes positive and negative developments. A “downdate” is a decidedly negative update. Here goes.

Lynn’s symptoms are growing in number and worsening. And she’s darn near non-communicative.

Since the MSA diagnosis, she’s been like a jack spinning so fast on a hard tabletop that you wonder when, oh when, will it stop.

I want to ride my trike. I want to go to the Y. I want to dodge the garbage cans and go from the back yard to the front in my wheelchair. I want to stand up on my own. I want to do it myself. I want to be normal. I want to live. And now that I’ve stopped caretaking, and can exhale, I wonder, who can blame her for her fighting spirit?

Now, though, the jack slows and wobbles. No more trike. No more trips to the Y. Alison said last night she held tight to a few garden tools, but no real gardening took place. It’s like this disease broke into our house, took every single thing in it, and then, not content, broke out a sledge hammer to destroy the walls. Now, I’m afraid, it’s going to torch the exposed wood framing. It’s relentless.

Since Lynn’s move to an adult family home five weeks ago, Alison and Jeanette have been amazing. Investing tons of time and energy. Ready to catch her as the wobbling worsens.

Lots of people continue to be amazing. Ebony, for example, is a hospice volunteer who comes twice a week to help Lynn shower. The last time she didn’t know I had slipped into the bedroom that is connected to the bathroom where she was helping Lynn. Ebony was so ebullient. She kept asking Lynn if the temperature was okay and continued talking to her like she was her own mother. She was having a genuinely good time aiding Lynn, and by extension, our family. Such humanity.

And Lynn’s friends. And their flowers. And cards. And visits. As a group, they are wonderfully unbothered by her decline. Like Alison, Jeanette, and me, they need her smile and probably wonder what they’re going to do without it.

A significant change is that Lynn is coming to grips with the fact that nature is running its course. And that her time is short. Her quality of life is such that she’s more okay with that now. One can only endure so much.

As for me, I’m living a double life. Monday, I had an amazing swim in a beautiful local lake. Tuesday, five friends and I were bearing down on Tenino when a herd of 50+ cows and calves, all the exact same white color, moved in unison towards the road to seemingly spur us on. That was surreal, and when combined with our idyllic weather, and the trees starting to show out, it’s tough not being able to enjoy my favorite time of the year with my favorite person.

When I get home from the lake and the group ride, the kitchen is empty. There’s no one to ask, “How was your swim? How was your ride?” So my autumnal joy is tempered by a void. My love of fall is no match for this loss of intimacy. Unlike Lynn though, I will be okay. In time.

How to Grieve

I don’t know. It’s been almost four months since my mom died. And this week, another gut punch via telephone. This time it was news that my wife’s former campus pastor who through three decades of friendship became a second, spiritual father of sorts to her, had died.

We are especially fortunate to have a foundation of friendship at times like this. After listening to and empathizing with my wife, she asked how I was adjusting to my mom’s death.

I told her I’m failing miserably at striking any kind of balance because it seems like I can either regularly stop and think about the permanence of my loss and be overcome with sadness or succumb to avoidance by filling my day with activities that distract me from thinking about her passing almost entirely. There has to be a large middle ground, I just haven’t found it.

Meanwhile, last Wednesday night I was sitting alone at an outside table at Vic’s Pizza while my wife went to the bathroom and gathered silverware and napkins. A three year-old boy at the table right next to me sized me up and then pointed right at me and said to his mom, “Does he have a mommy?” “Don’t point,” she curtly replied. When my wife joined me a few minutes later, he said to his mom, “He does have a mommy.”

Carol Byrnes and JSwanson would’ve laughed heartily at that and I love the image of them laughing together even though they didn’t know each other.

Besides a lighthearted story, I have one grief-related insight to share. More accurately, I have one end-of-life-related insight from Richard Rohr’s book Falling Upward: a Spirituality for the Two Halves of Life. “Death,” Rohr writes, “is largely a threat to those who have not yet lived their life.”

Carol Byrnes and JSwanson lived full lives. May you and I do the same.