Category Archives: health

Scheffler For The Win

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Not the fleeting kind that ends in hoisting a trophy. The real “meaningful life” kind.

Scottie Scheffler, the world’s #1 rated golfer, is winning more tournaments than anyone else and just asked at one of the most honest and provocative sports pressers in recent memory, “What’s the point?” You don’t have to be a golf junkie to watch/appreciate it.

Maybe his perspective is even more impressive than his game. He somehow knows fame is fleeting. And ultimately, unfulfilling. Especially compared to family.

I quit competing in triathlons after conducting a mental exercise. I thought to myself that if I truly committed to consistent training, age group wins at decent races were possible. And qualifying for the Kona World Championships. And these best case scenarios didn’t move the needle nearly enough for me to continue racing. I concluded, “What’s the point?”

There is one convincing reason for aging weekend warriors to keep entering races. Races provide many the needed motivation to train.

Back in my earliest triathlon racing days, I integrated swimming, cycling, and running into my life to the point that I regularly do some combo of all three each week*. Thus, that rationale doesn’t hold for me. I get “out the door” without signing up for anything. But, I suspect I’m an outlier in that respect.

*Haven’t swam in July yet. Father/Mother, forgive me, for I have sinned. My excuse is I’m allergic to something in the lake. And it seems like a crime to swim indoors in July.

Two Worlds

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Public and private. All of us behave a little or a lot differently whether we’re in public or not. In extreme cases, people live “double lives”.

The dichotomy between Lynn’s public life, by which I mean when friends and family visit, and private one, where I’m the only person around, is so glaring that it got me thinking.

Specifically, I’ve been pondering why she’s not just okay when friends and family are around, but especially smiley (and today, extremely giggly) and physically better than normal. There’s a wonderful lightness. I guess it makes sense learning what we’re learning about the importance of close interpersonal relationships to our overall health and well-being.

But man, the whiplash that comes when friends and family leave is intense. And disorienting.

When home alone she pops boosters between timed meds and her body is off and on, and when on, she’s bored, and she struggles with any sense of purpose. There’s a heaviness.

Why am I telling you this? Not sure. Maybe to help you mentally prep for this phenomenon if you’re ever a primary care giver. Or maybe I’m letting you in hoping for some sort of connection.

Last night, I had an epiphany. A tough one that I was hesitant to share with Lynn because I expected a negative/defensive reaction.

I told her I had an observation I wanted to share with her. “You have a restless spirit.” There, I said it. Fortunately, I was wrong, because she didn’t argue the point. She listened carefully as I told her I missed her, that it felt like all of her time and attention was taken fighting her Multiple Systems Atrophy. That there was no time or attention left for me.

That I felt more like an employee than best friend.

Most people confined to a wheelchair and unable to do hardly anything independently watch a lot of tv and read. Since Schitt’s Creek ended, Lynn doesn’t watch tv and her reading glasses, despite repeated trips to the optometrist, aren’t working well enough for her to read much.

Thus, when alone, if she’s feeling okay, she’s in constant motion searching for something to do. Anything to do. Or she’s laid out on the couch waiting for her meds to kick in. The only time she’s not on the move is when her body completely quits or she’s asleep.

Our convo, mostly about how dying is scary and spiritual malaise, deepened. She cried and said she didn’t know “I loved her that much”. I took in what I think was her deeper message, “I didn’t know I’m that lovable.” I told her lots and lots of people love her.

I told her I was having a hard time dealing with her restlessness and with her constant MSA fight. That caring for her took all my energy, that there was no leftover energy to just hang. And that it would be really sad to spend our final months or years together not really together.

Case in point. Saturday and Sunday nights I throw dinner together for the fam and then sit at the kitchen island with my own dinner while one or both daughters join their mom at the dining room table. Hell, during the week I do it too, leaving Lynn to eat by herself. Yeah, you’re right, I am a lowlife.

While I am a lowlife, I probably deserve a few points for being vulnerable and risking the convo. Sadly, in part, I risked it because soon we won’t be able to have back-and-forth conversations of that sort.

But not being especially centered myself these days, it’s really tough to take on her anxiety about dying, her exasperation at MSA’s relentless progression, and her general unease and utter restlessness. Especially given the cost that restlessness is taking on our friendship. For now.

Postscript: We ate dinner together. Afterwards, there was more slow dancing in the kitchen. The roller coaster keeps rolling.

How Is It Playing?

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According to “insiders”, that is the Mad King’s default question. Not, what is the right thing for the common good, how is it playing?

Cut to John Gruber:

“Having an ignorant conspiracy nut lead the Department of Health and Human Services is angering and worrisome, to say the least. But it’s also incredibly frustrating, because Donald Trump himself isn’t an anti-vaxxer. In fact, one of the few great achievements of the first Trump Administration was Operation Warp Speed, a highly successful effort spearheaded by the US federal government to “facilitate and accelerate the development, manufacturing, and distribution of COVID-19 vaccines, therapeutics, and diagnostics.” Early in the pandemic experts were concerned it would take years before a Covid vaccine might be available. Instead, multiple effective vaccines were widely available — and administered free of charge — in the first half of 2021, only a year after the pandemic broke. It was a remarkable success and any other president who spearheaded Operation Warp Speed would have rightfully taken tremendous credit for it.

But instead, while plotting his return to office, Trump smelled opportunity with the anti-vax contingent of the out-and-proud Stupid-Americans, and now here we are, with a genuine know-nothing lunatic like RFK Jr. as Secretary of Health and Human Services. God help us if another pandemic hits in the next few years.”

Of course, as we’re already seeing in places like West Texas with a measles outbreak, the public health threat isn’t limited to a possible pandemic.

In Sickness and in Health

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Shout out to Redmond, WA and Hong Kong for the recent ever-so kind and encouraging words. Words that have inspired me to share this post from the other blog writing I’m doing just for friends of Lynn interested in knowing how she’s doing.

Just as there are two distinct Lynn MSA stories to tell, there are two distinct ones that I could tell about myself as primary caregiver.

When you tell your own story, you run the risk of making yourself into a hero. Of emphasizing all that’s admirable and slighting the inevitable messiness and selfishness. This story is hella complex with contrasting personal histories all mixed together with psychology, mental health challenges, emotion, and spirituality.

Thus, the Reader’s Digest version.

Lynn’s predicament is way, way worse than mine, but I’m as unhappy as I’ve ever been. Lynn’s only advantage is that her challenges are obvious to the steady stream of people who visit. People mostly look past me, assuming I’m fine, which I try telling myself I am.

But that’s bullshit. I’ve never experienced anything remotely this challenging. And I don’t feel like I can tell the whole story to anyone because who would have the capacity for the whole damn thing? Simpler to say “fine”, “okay”, “hanging in”, “coping”, “keeping my head just above the water”. I’m a five tool player when it comes to keeping people at a safe distance.*

The sad fact of the matter is I have had to sacrifice everything that brings me joy, especially social connections, in service of Lynn’s daily needs. I have been housebound for exactly a year now. Except for a daily shortish run, ride, or swim. Without those physical activities, I don’t know where I’d be.

I also don’t know where I’d be without our two health care assistants, my two daughters, and Lynn’s closest friends who keep showing up for her, and by extension, our family. People keep making meals for us even without the Meal Train. People are praying for us and sustaining us with flowers, fellowship, and love.

Still, I recently told Lynn I don’t know how long I can carry my half. And feeling abandoned just at the idea of some alternative arrangement, she broke down. And for now, to make a very hard thing even harder, things suck between us.

Hearts will soften and things will improve. They always do. But this challenge will not lessen. I feel overwhelmed almost all the time. I am no match for this relentless disease. But doing the best I can for her. Today at least.

Postscript: I have caught a second, or is it third, or fourth, or fifth wind? And hearts have softened and we are back on track. For now.

*a baseball concept for a player that excels in all five key areas: hitting for average, hitting for power, running speed, fielding ability, and throwing arm strength

Sorry

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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.

Uphill Finish

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On a website called “CaringBridge”, I’m writing occasional updates on the Good Wife’s Multiple Systems Atrophy for a growing list of family and friends from near and far.

What follows is this week’s CaringBridge update.

One of my favorite bike rides is super challenging. And hella scenic. The boys and I, starting near Widgi Creek Golf Course in Bend, Oregon, spend the morning climbing up to Mount Bachelor and then midday circumnavigating it. It’s 85 miles in total, but when it comes to the day’s nutrition/hydration/grit, I prep for 72ish because the last 13 or so are all downhill, sometimes even with a tailwind.

I wanted to live out life with Lynn just like the Bachelor ride. Spending the final segment, having real fun, aimless, with the wind in our (fading) hair, enjoying ourselves, without much effort. We saved money, I unplugged from work, and Century Drive stretched out before us.

In my warped/idealized vision of unreality.

Now, I’m so sad to report, our collective ride is ending not with a grin inducing downhill, but with a major climb. Into a headwind, with plummeting temps, even hail. Think Italy’s Stelvio Pass.

If I had known we’d have to confront a hugely challenging curveball at some point in our story, I would’ve chosen an earlier chapter. Fo sho. But wasn’t given the option.

There’s too much to do to feel sorry for myself. I can and do feel very sorry for Lynn though.

One of Alison’s friends from high school died recently at exactly half of Lynn’s age.

That tragic event made me appreciative of the length of our ride, but I’m still extremely sad about Lynn’s daily challenges.

In short, things are going from rough to rougher. She’s sleeping more, her voice continues to fade, and her body completely shuts down about once a day.

But her mind and loving spirit remain intact. And for that, we’re grateful.

On Hiatus

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Since the beginning of the humble blog, I’ve strived to write authentically. Because of her right to privacy, that’s gotten more and more difficult as my wife suffers from a debilitating illness.

I am trying to care for her and am completely overwhelmed. But I don’t feel I can write about it. Maybe at some point in the future. Probably at some point in the future.

For now, in addition to caring for my wife, I’m planning to teach beginning in September. I don’t think I can do right by my wife, my students, and you.

Thank you for reading me and especially to those who took the time to comment from time to time.

Is this the end? I don’t know, time will tell. I’m trying to not plan the future as much, and instead, to live in the present.

Peace out.

Let Me Take Care Of It

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‘member when I said one huge advantage of the new crib is the time I’ll save maintaining the much smaller yard?

The truth of the matter is, I kinda like yard work because the results are immediately visible, the exact opposite of my efforts to educate the next gen. Or my efforts to contribute to the common good more generally.

Right now, I’m bouncing back and forth between the old, still unsold house, and the new one. Yes, as a matter of fact, it does take real muscles to lift the mower in the back of the hatchback.

Yesterday, post shitty weather, I hit the Nature Park hard. There were an infinite number of brown pine seeds, leaves, branches, weeds, overgrown shrubs, but they were no match for me. First, blow. Then recharge batt. Then, pick up branches, pick largest weeds, toss pine cones over the outfield wall. Second, trim bushes front and back. Third, take recharged batt and blow a second time, moving bush clippings, leaves, and pine cone seeds into yard. Fourth, suck up said detritus while mowing with bag (verus the usual mulch). Fifth, pick up small branches that mower missed. Sixth, blow again because you can never blow enough.

It looked like like a million dollars. Or more.

A friend in North Carolina referred to “Mow, blow, and go” guys with derision. Screw that. It’s all about mowing, blowing, and going as fast as possible. Get the heart rate up and don’t let the perfect be the enemy of the pretty good.

Maybe when I close the classroom door for the last time, I’ll start a lawn business. Running between two houses is fun, but I imagine running between 10 would be 5x as fun. I’m workshopping names, let me know what you think. I saw a sign/advert yesterday while cycling for Lawn Boys and immediately thought of “Lawn Boy”,” a “take that” to that evil woman at Burgerville. Or maybe,”Mow, Blow, and Go”? Catchphrase, “Let me mow, blow, and go for you.”

The best part of this plan is I’ll have to buy a pickup truck. Well, that and what the GalPal is going to do when she sees my sweaty self get out of the truck after a long day of mowing, blowing, and going. Hubba hubba.

Pro Proximity

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I’m sorry, but as a professor I have to sporadically use unnecessarily complex words. Like “sporadically” in place of “once in awhile”.

More illustrative of this professional obligation is the term “dialectical dilemma” which is when two seemingly conflicting things are true at the same time. Por exemplar, I annoy people*, you annoy people, people inevitably annoy one another, a little or a lot, some of the time, or nearly all of the time. It’s just baked into our daily lives. We give and we get.

Social scientists keep learning about all the ways close interpersonal relationships, or more plainly friendships, are essential to our well-being. Especially as we get closer to senior discounts.

So what are we to do? We annoy each other, but need each other.

Some people choose to live in remote settings where they’re way less likely to interact with others. Thus, they’re way less likely to be annoyed, while simultaneously giving up the substantial benefits of social interaction.

To each is own of course, but I’m convinced we should embrace the risks of being annoyed by living in closer proximity to others. Put differently, we should design our lives so we have to interact with others on a regular basis. Knowing our feathers are going to get ruffled.

Zillow has a cool feature called the “Walk Score” for residences. Our old home had a Walk Score of 0. Our new one has a Walk Score of 65. From the country to the city we go.

One day last week, the Good Wife tricked me bigly. “Do you want to weed the front together?” she asked. I knew I was looking especially fetching, but that was a shameless come-on if I ever heard one. I pictured us rolling around in the dirt. Maybe? Instead, once I got into full tree trimming and power weeding mode, she announced she was going inside.

Then. It. Happened. It turns out we live on a major bike route. Someday, if you bike from downtown Olympia to the Westside, you will go right by our house. In an hour, 15-20 cyclists went by. Of all sizes and shapes. After a kitted-out BTorian passed on his mountain bike, he turned back and said, “Is that Ron Byrnes?!”

A little later Suzie, the owner of a downtown art gallery stopped on her ginormous Specialized e-bike. And we talked and talked and talked. She asked me when I’m getting an e-bike, which in hindsight, prob shoulda prepared me for the Burgerville bullshit.

And then Burke, from two houses down came over, and we talked. About how middle schoolers care about one thing, peer relations, and therefore will say ANYTHING to preserve them.

Long story short, in one hour I spontaneously interacted with more people than I did in eight years at our Nature Park residence. Which is good for me, because I’m an introvert.

So six miles and 65 points later, I’m damn near a social butterfly. A slight exaggeration, but don’t hate me because you ain’t me.

*Last week, when I was in too big of a hurry, I may have left my Costco cart against a curb in the parking lot instead of returning it to the cart stand. A women in a minivan slow rolled right by me, GLARED at me and then WAGGED her finger at me as if I had just run over a kitten and a puppy. It was so over the top, it didn’t have the intended effect. Instead of feeling shamed, I felt amused and amazed that I could annoy her that easily.