It’s Happened

A large part of the rationale for the move to the Adult Family Home three months ago was that I could recover, and therefore Lynn and I could heal and get in sync, and spend whatever time is left as positively and peacefully as possible.

I am not in a good place, but a much better one. Way, way less stress. FuFu, Alison, and Jeanette, among many others, have saved me.

As a result, for the last two months, Lynn and I have enjoyed my visits. We look at photo albums. We listen to music. I tell her about my day. We loop the hood.

Most of all, we touch. I hold her hands and massage her calves. She hugs me tightly as if she’s not going to let go. We press our foreheads against each other. I caress her head as she falls asleep. We kiss.

It’s how we communicate.

I’ve never partnered with someone who is dying, so I’m improvising. All the time. What to say?

Last week I kneeled on the floor next to her hospice bed as she cried before napping. I told her I loved her and that she was okay, which of course, was untrue. Then I told her how sorry I was for what she’s experiencing. And that she’s been fighting it every minute she’s been awake for a few years and that was why she was completely exhausted. And that I wanted her to Rest even if that meant being alone. I told her how much I am going to miss her. More tears.

Then I told her she wasn’t alone and wouldn’t be alone. That she is bearing the fruit of having built such a caring and loving family.

We have had a much more intense relationship than you would probably guess. Intensely good most of the time, intensely bad some of the time.

I told her I was skimming an old Apple Note I wrote from when we were in marriage counseling five or six years ago. And how my one regret is all the time we wasted being mad at each other. I asked her to forgive me for being so stubborn and selfish. More tears.

I suspect she wanted to say something similar, but I was okay with her not being able to because I wanted to take most of the responsibility for our epic, sporadic struggles.

Even though we wanted to at times, I told her we never quit, and that was something.

In hindsight, we probably wasted 10% of our time together being too mad at each other to thoughtfully interact. Even though we learned to repair things, 10% of 38 years is almost four years! What we would do to have four years back.

More than Lynn, I accepted that we were never going to coast conflict free like some couples seemingly do. That the heartache was part and parcel of the intense intimacy. Again, in hindsight though, I wish we had far fewer, less intense conflicts. Fewer days where we couldn’t even talk to one another.

My unsolicited advice. Don’t take whatever committed relationships you’re in for granted. Be as proactive as you can. Trust one another enough to talk about what lies below the surface so that resentments don’t build up. Learn to listen and get more comfortable probing your partners’ feelings. If possible, by yourself, or together, enlist the help of a professional to learn to have fewer, less intense conflicts.*

Most of all, don’t assume you have many years and decades left, because you may not.

*LOL, I’m gonna get slammed for that wee bit of hypocrisy. :)

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.

The Ultimate Litmus Test

At the end of life, how does one know whether they’ve lived a good life or not? More personally, how will you know if you have? How will I?

Many of us live as if professional reputation, material wealth, and social status are the key ingredients, but watching The Good Wife get closer to the end provides an altogether different litmus test.

Which is this. Have you been a good enough friend, to enough people, long enough, that they’re there for you at the end? Or has a certain self-centeredness and peripatetic life left you mostly alone?

You’ll only know which of these is the case if you die slowly. Some of us will go quickly like a friend of mine who fell over dead on his bike in Italy last summer. Although he didn’t have time for the “close friend” litmus test, his memorial service provided positive clues to a life well lived.

Based on the “close friend” test, Lynn has lived an exceptional life. Unfortunately though, she’s unable to take solace in that knowledge. Because like many of us, she’s incredibly hard on herself.  My unprovable hypothesis is that the built-in feeling of inadequacy began at birth with Lynn wondering, “Why didn’t my mom want me?” Almost certainly, it didn’t help when 45 years later she contacted her birth mom only to learn she still didn’t want any kind of relationship.

Consider the last 48 hours. Yesterday, Lynn participated in a zoom call with her four dear college roommates. “Participated” meaning listened intently and smiled throughout. Today, an hour before Pastor Carol was coming by with communion, Susan texted to see if she could pop in. I said she could join Lynn and Carol, Carol happens to be Susan’s pastor, and the three of them visited for over an hour. I could go on and on. Lynn’s support network has blown my mind. She is being loved and supported by so many people none of whom are the least bit phased by her worsening symptoms like her loss of voice.

Some bring art, some bring pictures, a lot bring food. In the end, they just want to be next to her. And to see her smile. When we’re without her smile there is going to be a painful void in a lot of people’s lives, not just A’s, J’s, and mine.

I intend on honoring Lynn’s eventual legacy by prioritizing friendships even more.

Sorry

Owe the Slo-mo Turtle* an apology. Of sorts. One day last week I was running around baby Cap Lake when I had an inconvenient epiphany. Of sorts.

After pulling the plug on the run, I did what I almost never do. I pressed pause and sat on a bench by the lake to gather enough energy to scale the 4th Street bridges. And I reflected on all the things I do every day to extend my life, like run, lift weights, and eat vegetables. I don’t do those to consciously extend my life as much as I do to improve the quality of however much time is left.

But still, it’s hypocritical for me to be critical of the SmT for doing everything in her power to beat back MSA’s progression. Yes, it does make it harder to care for her, but I’d have the same inclinations if I was in her shell.

Because there’s no way to control for all the variables, and there’s no counterfactual, I don’t know whether her efforts are having any real effect. I see them more as grasping at some semblance of normality.

Today the SmT fell asleep while eating lunch. Afterwards, Hospice Audrey, a very nice PLU grad, came for a visit. We talked about sleep among other things. The SmT is bothered by sleeping way more than normal. Audrey encouraged her to listen to her body. As I repeatedly do.

She’s not good at that. She’s choosing to crawl into the ring with twenty-something Mike Tyson.

All of us are trying to delay the finale. Aren’t we? All of us fight inevitable decline in some combo of small subtle ways and larger more dramatic ones. Don’t we?

Sorry SmT, upon further thought, we are more alike than different.

*Another nickname for the GalPal inspired by her morning routine.

Trying To Keep It Real

Newish ritual. When Abigail comes at 8p during the week, I take advantage of the evening light and walk towards the co-op and then down the Garfield Nature Trail, popping out on West Bay and up West Bay back to basecamp. A serene 2k. All while whittling down the podcast queue. Since starting this ritual my sleep score has risen a bit. Cowinkydink?

The last “evening walk” pod was an interview with a male family therapist who explained men don’t learn to be vulnerable. Dude, not an original insight, but one that trigged one in me. While listening to him it dawned on me that The Good Wife wasn’t being vulnerable with me about her worsening condition and finite time. At all. And that, as a result, I wasn’t feeling very connected to her. Just the guy who helps her in and out of bed and the wheelchair. The bloke who cooks, cleans, and keeps her calendar.

And so I told her that, and said, “What gives?” And she deflected, saying I wasn’t being vulnerable, which was humorous because I had just defied my gender and communicated a heartfelt feeling. And I told her that too. And she was silent for awhile. And then.

She talked about my first marathon back-in-the-day which went by our street at mile 21 and how I had dropped out and didn’t even make it to there. And how I felt so bad for failing A and J. That it was a perfect opportunity to model toughness and I blew it. And how my beating myself up stuck with her. And she said I always praised her for any toughness she showed. And that if she’s tough now maybe she’ll slow down the disease’s inevitable progression.

Ah shit. Any chance of rewinding the tape? Of a do-over?

I told her I didn’t think toughness would slow down the atrophy, but that it most certainly would make it more difficult for us to connect.

Then she went deeper. Talked about being afraid of dying. About questioning lifelong religious assumptions. About specific anxieties tied to what will happen to her body upon dying.

Which allowed me to return to the old familiar fold of closest confidant and best friend.

I thanked her for her honesty and encouraged her to think about dying as a natural process that happens to her beloved plants, animals, all aspects of nature. To think of it as falling asleep, but not having to wake up.

I said it would be unbearably sad alone, but that she’ll be surrounded by people who love her dearly. People who are much better off having known her.

Right now, I’m the oldest and wisest I’ve ever been, so I don’t expect any of those words to ameliorate her end-of-life anxieties and fears.

But maybe, hopefully, a little.

Why Not?

Inner peace is elusive the more we try to control others. True contentedness results from relinquishing control over other people’s thoughts and behaviors.

That’s what I’m in the process of learning. Am I half way? Who the hell knows. All I know is I will never arrive at the Total Acceptance train station.

When Lynn was diagnosed with Multiple Systems Atrophy and the symptoms started taking over our lives, I had unusual clarity about what I wanted to provide her in whatever time was left. I said to her, “I want this final chapter of your life to be as calm and comfortable as possible.”

As it has turned out, what I wanted was totally irrelevant. Her thought process was completely different, saying through her actions, “I want to ignore this diabolical disease to the best of my ability and maintain as much normalcy for as long as possible.”

Which makes caring for her so much more difficult. She’s always been uber-considerate and kind to a fault. Now though, her preternatural consideration is getting squelched by widespread atrophy. The lack of dopamine in her brain is wreaking havoc on her body and mind. I have to remind myself she’s not making a difficult situation more difficult on purpose. It’s brain chemistry.

A few examples. Six months ago or so, after dinner, I was able to say to her, “I’m going upstairs to read in the bath. I’ll be back down in one hour. Sit tight until then.” One fall night while I was decompressing in hot water, the bathroom door slowly opened. “What the hell!” No one else was home. Lynn entered on all fours. She had wheeled herself to the base of the stairs, gotten out of her wheelchair, and crawled up the stairs and across the t.v. room into the bathroom. Because she “wanted to see what the upstairs looked like now”. It wasn’t pretty getting her back downstairs.

A couple of nights ago, she appeared in my peripheral vision as I was watching basketball in the office. “WHAT are you doing?!” “Crawling.” “Why?!” “Why not?”

“Why not” is her philosophy.

Yes, you’re right, her stubborn resistance to the disease’s progression is better than giving up on life, but man oh man, I wish I could get her to accept the ways her body is failing her. At least a little bit.

But I can’t. And the more I accept that she gets to decide how to live out her final chapter, the better for both of us.

Who are you trying to control? How? When will you throw in the towel? The sooner, the better.

 

Maybe I’m Buddhist

I’m listening to a personal finance podcast series geared towards the retirement set. It’s about how to think about your legacy or how others will remember your brief time on this planet.

I appreciate the fact that the host emphasizes positive, non-material contributions to people and places.

But in starting to think about my potential legacy, I get stuck on this question. Isn’t any consideration of legacy the byproduct of ego? Put differently, I suspect the better we manage our ego, the less concerned we’ll be with our legacy.

Again, I turn to my sissy who occasionally reminds me, “It’s not all about you.” But what if she’s only partially right. What if NONE of it is about me?

Odds are a few people will remember me for a little while. And then I’ll be forgotten. Probably like you.

It’s at this point that Dan, Dan The Transportation Man loses it and calls me a real downer. And I tell him I prefer the term “realist”.

Deciding I don’t know or care much about my legacy, I quit the podcast series midstream.

Are You ‘Misliving’?

William Irvine’s The Guide To The Good Life is an attempt to reinvent Stoicism for the 21st Century. Irvine argues that everyone should have a philosophy of life that includes specific strategies for achieving their primary objective(s) in life. Absent an intentional plan, at the end of life, people will regret that they have “mislived”.

Put differently, one should live intentionally, not spontaneously. He acknowledges few people do so mostly because of the “endless stream of distractions” that keeps them from clarifying what’s most important. And he made that point before social media and streaming television both exploded.

If pressed though, I’m guessing Irvine would acknowledge rewarding times in his life when he acted spontaneously, when he said yes to an unexpected invitation or adventure.

I wonder if the answer to the dilemma of just how intentional to be in planning one’s life lies in the tides, meaning there should be some sort of natural ebb and flow between intentionality and spontaneity.

The older other people and I get, the more set we become in our daily routines. Losing some of our youthful spontaneity, we should carefully consider the improvisors’ dictum of always saying YES. Okay, “always” is unrealistic, but what about “more often”?

A LOT of my acquaintances and friends have died lately, almost all of them from cancer, a scourge we may be sleeping on amidst the endemic. Being my age, their deaths have got me thinking about my own.

Despite not having an explicit philosophy of life, if I die sometime soon, and have time to reflect on my six decades*, I wouldn’t at all think I had mislived. Quite the opposite. I would be grateful for all the meaningful friendships; all the socially redeeming work; and all the fond memories of things including athletics, traveling, and especially family.

Lately, I’ve felt a deep and profound sense of contentment for most everything including my new and improved health, our home, and the natural environment in which it sits.

That very spiritual sense of contentment doesn’t have to conspire against saying YES to new invitations and adventures does it? To continual growth?

Presently, I’m most interested in personal growth. Professionally there’s nothing I feel a need to accomplish. My plan is to spend my remaining days learning to listen more patiently and empathetically to others—whether the Good Wife, my daughters, you, my students, everyone. That could easily take several more decades. Guess I should keep exercising and eating healthily.

*meaning not on my bike :) 

We’re Too Optimistic?

That’s AC Shilton’s sense in “Why You’re Probably Not So Great At Risk Assessment”.

Shilton closes this way:

“Our brains may sometimes be too optimistic. While that isn’t always bad (going through life thinking constantly about every bad thing that could happen isn’t healthy either), in a situation like this, your brain could expose you to unnecessary risk.”

AC Shilton’s bio* says she’s a two time Ironman finisher and a chicken farmer, so what’s not to like, but I think she gets this wrong. Most people’s challenge lies in the parenthetical note—constantly thinking about worse case scenarios.

Where’s that essay?

Coronavirus deserves attention and we should beat it back through proven mitigation strategies. But I’m not going to fool myself. I’m four months closer to dying than pre-pandemic. Could be skin cancer. Could be someone texting while driving who takes Blanca and me out this afternoon, could be heart disease, could be a tree during tomorrow’s run in Priest Point Park.

I use sunscreen, I wear a mask when inside or unable to maintain proper distance, I eat healthily and exercise regularly, I use seatbelts; but I’m not going to fool myself. I am going to die. The humble blog will be no more. Guessing whether ‘rona or one of the other myriad possibilities is gonna get me, it ain’t even close.

*Screen Shot 2020-07-02 at 10.23.36 AM.png

On Mourning

Conventional wisdom is sometimes wrong, but when it comes to mourning, it’s correct. Everyone mourns differently, some inwardly and quietly, others with much more feeling. Some mourn briefly, others for extended lengths of time. There is no right way to mourn, the key is to respect everyone’s individual approach.

At the same time, the recent passing of Kobe Bryant, the other eight victims of the helicopter crash, and also Leila Janah, have me thinking more about death.

Intense grieving for the likes of Kobe and Leila makes perfect sense given their relative youth, 41 and 37 years old respectively. In that same spirit, one of the most sad passings I’ve ever observed was that of a friend’s 7 year-old son. We are understandably most saddened by people who do not get to experience the full arc of life.

And yet, Kobe, Leila, and my friend’s son left the world a better place. Leila, for example, founded a company that . . .

“. . . employs more than 2,900 people in Kenya, Uganda and India, creating data for companies around the world that need to test numerous artificial intelligence products, including self-driving cars and smart hardware. The company has helped more than 50,000 people lift themselves out of poverty and has become one of the largest employers in East Africa. . . .”

And as we’re learning, Kobe’s imprint was also large, most significantly off the court through his parenting, writing, and support for technology startups, young athletes, and women’s professional sports.

My friend’s son’s legacy was less public, but still profound, a lasting impact on his family, classmates, and community. Until cancer appeared in his blood, he was pure joy, a natural peacemaker.

To me, the saddest deaths are those of people who do not leave even some small sliver of the world better off. People whose words and actions didn’t console, inspire kindness, or help others be more humane. Those are the passings we should grieve the most.