Author Archives: Ron Byrnes

Downdate

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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.

Localism Is The Answer

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Increasingly, it’s obvious that the more “plugged in” to the news, the more “on-line” one is, the worse their physical/mental/spiritual well-being because media algorithms know that outrage is the surest way to attract and keep eyeballs, and thereby sell advertising. As a result, outlandish opinions dominate. And once you and I are sufficiently outraged, we can’t unplug.

So if you and I want to maintain whatever sanity we have, we should intentionally tune out the news. Learn to leave our phones behind on occasion. Step away from our keyboards. Not watch as much t.v., or more likely, stream television clips.

Ignorance may in fact be bliss, but it also empowers those in power, because the more uninformed people are, and the more apathetic, the more free elected officials are to do as they please.

So what are we to do? Localism is the answer. Or a variation of the popular phrase that you no doubt remember, “Think globally, act locally.” Instead, maybe we should, “Think locally and act locally.” I’m advocating for a type of grassroots accountability, starting with ourselves and then branching out to where we live, trusting that if we do right by those we’re in closest relationship with, our county, state, country, and world will be okay in the long run.

So, in this way of thinking, we don’t get embroiled in fighting about national policies or current events. Instead, we recognize that our attention and energy are finite; consequently, we focus on being better partners, parents, and friends to those we live with, next to, and near. We go to the farmers’ market and initiate conversations with those closest to us.

Recently, someone, on-line ironically, asked a great question that gets to the heart of localism. They asked, “Do you know the name of the person that delivers your mail?”

I don’t. Why? Because I’m usually on my computer when she visits each morning.

Clearly, I have a ways to go.

My Phone Is Now Obsolete

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My “friends” like to bust my chops for buying and selling cars too often. And yet, they give me no credit for my seven year old iPhone. The whole lot, consistently inconsistent.

One of my besties visited last week from CA. While in the kitchen, he glanced at my ancient iPhone XS Max on the counter, smiled, make that laughed, and asked, “Do you still keep it in a tube sock?”

“What the hell are you talking about?”

“When you first got it, you used to keep it in a tube sock!” followed by more guffawing.

Damn if I hadn’t repressed that memory. It started to come back. Walking into Department meetings slinging a tube sock on the table next to me. Too bad I can’t rewind that tape. Had to have been the phone before the ancient phone and I vaguely remember waiting on a proper cover. Still, hard to live that down. Damn his very good memory.

I just watched a vid of tips and tricks to customize the brand new IOS 26. Only one problem, IOS 26 only works on 11s forward. Tim Apple, what are you doin’ to me, a longtime investor?

Yeah, it’s probably time to upgrade, but I don’t like being pushed. I wanna jump into the new tech pool of my own volition.

The AirPod Pro 3 reviews are smashin’. I will get those despite the 2’s still being fine. The bonus being that will give my “friends” more fodder.

Paragraph To Ponder

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From an article titled, “In Yellowstone, Migratory Bison Reawaken a Landscape“.

“Tens of millions of bison once roamed North America, grazing on grasslands, forests and plains, from the Great Basin of Nevada to the Atlantic Coast. It is difficult today to imagine the size of herds that are no longer seen; Lakota oral histories gauged herd size by the number of days it took them to pass.”

No mention of North Dakota State football.

Just How Loco Exactly?

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After my last musing, SW, a close friend, texted me, “Please be more specific. I’m curious just how crazy you are.” Which made me smile.

The return text, “Where to begin?”

But then, I pressed pause. And thought about self compassion. And how I need to muster more of it given this most challenging chapter of my life.

And so I started to think about both sides of the ledger, the “irrational” and “rational”. The irrational mostly consists of what most objective observers would conclude is poor time/money decision-making. Meaning, I regularly do things that I could pay others to do for far less money than my increasingly limited time is worth.

But sometimes I just like popping the AirPods in, cranking up the Biebs, and washing my car in the driveway. Or washing the windows. Or cleaning the house. Which brings a documentary to mind about Japanese elementary schooling. When asked why young Japanese students clean their school at the end of each day, one Headmaster said, “Cleaning creates a calm and gentle spirit.” Love that. Sometimes there are less obvious, less tangible benefits to laboring yourself.

Without detailing the “rational” side of the ledger, suffice to say, there would be many more entries. In retrospect, I think I’ve done an extremely good job picking my parents, picking my in-laws, earning, saving, and investing. The first two highlight the role LUCK has played in my life. I wasn’t anywhere near perfect with respect to the other three, but I have made disproportionately more thoughtful decisions than thoughtless ones.

In my early twenties, when I was gifted some money from my parents for the first time, I had this deep-seated impulse to make the most of it. As an educator, I knew I’d never make bank. As a result, I educated myself about investing, and as our assets grew, we assiduously avoided lifestyle creep.

So much so, that family and friends get infinite amusement from teasing me about being too frugal for my own good. Yeah, I admit, often I am, but we still have lived posh lives, even by Western, late 21st century standards. And what my “friends” always fail to mention is that I’ve done a very good job growing our assets and taking the long view.

Which means now, we can pay for 24 hour care for The Good Wife without losing sleep. Which is a real blessing and one of the clearest indicators that my rational side has more than compensated for my irrational quirks.

For SW, here’s a lil’, lil’, on the quirk front. Yesterday, I traded in the Elonmobile for a new rig. I concede, I have a car prob, specifically, churning through them. The new rig comes in eight colors. I ended up with only my fifth or sixth fave color because it was the best deal I could find in Western Washington. By about $3k. I consciously told myself, configure the rig in whatever way will increase the odds of keeping it longer than my sad (sick) average. So I got the top trim, points for that. But deduct the same points for settling for a bottom-half color.

Also, SW, I spent way too many hours watching reviews, thinking about alternatives, and alternatives to alternatives, and then ultimately, interacting with dealerships.

Now, my “friends” are ripping me for being an ICE ICE Baby again. Mr. Fossil Fuel. A retrograde. To my many critics, take a number. Two of my fave “new car” texts today were, “He is milquetoast and has completely given up.” And “Your car matches UCLA’s performance” which was just mean.

Shifting gears, pun intended, I aspire to be more like my mom and wife, meaning way more generous. I took a baby step two weeks ago when I gave Olga a $3,000 (the money saved on the dud color?) bonus for being such an amazing help with Lynn over the last year. Because she lives check-to-check, it was like I had given her $30,000. As tough a Russian-Ukrainian woman as you’ll ever meet, at least on the surface, she broke down in tears.

So, forgive me if I cut myself some slack. Savings to soften the devastating blow of MSA. Savings to help the hijas and lighten others’ burdens. Savings to enable Olga to breath a little easier for a few months.

Just not enough savings for a bitchin’ colored rig.

Un Poco Loco

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I need help testing out the idea that I’m unique in that I’m keenly aware of the fact that a lot of my behavior around saving money is irrational. And yet, despite that keen awareness, the same irrational behaviors endure.

Most people, I think, are resistant to labeling any of their behavior irrational. They are convinced they’re entirely rational. Right?

I also have a strong suspicion that the outliers like me who are in touch with their irrationality are better at remedying their behavioral quirks. Correct?

Why, I wonder, does my money saving lunacy endure despite its obvious irrationality?

She’s A Poet, Does She Know It?

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Yes, of course I’m all caught up on the Taylor Swift-Travis Kelce engagement story. Here’s my fave part of the paper of record’s story of the impending nuptials.

“I’m just there to support Travis,” she said of her trips to the games in the interview with Time. “I have no awareness of if I’m being shown too much and pissing off a few dads, Brads and Chads.”

On Dying

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Great title, Ron. What’s the opposite of clickbait?

The rollercoaster that is living with and caring for someone with Multiple Systems Atrophy careened down to the bottom of the track Tuesday late afternoon/early evening. Lynn’s body shut down. And I couldn’t understand a word she was saying. This was late into a long two-day stretch without our normal a.m. help. So I wasn’t in a good place, and Lynn, of course, was in a much worser one.

Then the 5p meds and my amazing dinner kicked in and she bounced back enough to ask, “What would you do?” And so, I told her.

“I’d probably give up. It’s hard to know for sure, but yeah, I might throw in the towel and let nature run its course. You’re way tougher than me. Which is kinda ironic isn’t it, since I often said you were too damn delicate? Yeah, in the end, you turned out to be way tougher than me. Maybe I have some Erwin Byrnes in me.”

Then I told her that a not inconsequential subset of people on the MSA listserv choose death with dignity or they voluntarily stop eating and drinking. Because they want to assert some modicum of control over the downward spiral.

In the past, after reflecting on her mom’s decision to stop eating and drinking in her final two weeks, she’s said she’d do the same someday. That time is not now, but her will to live isn’t what it appears on the surface when she flashes her golden smile. Her will to live is gradually flagging. Hence her question, “What would you do?”

Last night J asked her if she enjoyed visiting with her college roommates online and she surprised J by saying, “Not really.” Having eavesdropped on the conversation, I intuitively knew why. Because she will not be giving a toast at either of her daughters’ weddings. And she will not be traveling anywhere. The roommate’s normal catching up was a painful reminder of things lost and how her world keeps getting smaller and smaller. Of course, they didn’t intend for that, and they didn’t realize it because of . . . the golden smile.

Lynn’s question, “What would you do?” prompted me to think even more deeply about her daily life. Yes, I am a complete mess right now, but I’m going to get better. And I’m going to renew my passport next year, and I’m going to catch up with you hopefully, and add lots of events to my calendar that I’ll look forward to. I am bullish on the future.

What does Lynn have to look forward to? Or maybe, more immediately, what brings her joy? Me, especially when I’m okay enough to joke around. The labradude appearing suddenly under the wheelchair. Picking dead leaves off the tomato plants. SchittsCreek with the hijas. Saturday lunch with the gfriends. Always, Saturday lunch.

For me, I don’t know if that would be enough. If I was her, I’d feel almost entirely like a spectator of others’ lives, not an active participant. I’m not sure I’d feel enough purpose to keep fighting through all of the adversity. To be so damn dependent upon everyone for everything. Again, she’s starting to wonder if it’s enough too.

Whether to passively live as long as possible or more actively speed up the dying process a little or a lot is a deeply personal question upon which reasonable people disagree.

One thing I know for sure however, is that everyone who is dying slowly, should get to decide for themselves what to do, if anything, without any outside pressure. That’s why I keep telling Lynn my probable throwing in of the towel doesn’t matter. That she gets to decide how to live out her ninth inning. Which is one important factor in the move to an adult family home. She will be cared for by pros, not a shattered, amateur, impostor of a caregiver.

In saying I’d prob let nature run its course, I also shared my way of thinking about death which took shape following my dad’s sudden death when I was 33. At first, I was mad at the world that I’d never get to find out where our newly evolving friendship was headed. That he didn’t get to hold Jeanette. That so much promise was cut unfairly short. Then, somehow, I consciously pivoted to celebrating our nascent friendship and all the positive memories I had of him growing up.  

My intentional approach is “choose to celebrate” all the positive memories instead of being eternally upset that the movie cut off before the ideal end.

I told Lynn not everyone lives 64 years. And not many people have as fulfilling a 40 years (38 married) as we’ve enjoyed. I told her that, eventually, I will be okay, largely because of all the positive memories we made. She seemed receptive to my quirky thinking, but I can’t be entirely sure. Equally possible, she thought, “How did I get stuck with a bonafide whacko?”

I just don’t think we can do both simultaneously, we have to choose one or the other. I choose to celebrate. Is it a panacea for softening the blow of loss? Does it speed up the grieving process? No and probably not. Is it better than the alternative? Of being mad at the world? Of staying mad at it? Most definitely.

The Ultimate Litmus Test

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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.