Category Archives: health

What’s Wrong With Me?

Posted on by
7

Maybe the answer is as simple as my wife, Lynn, is aging at warp speed due to her Multiple Systems Atrophy, a rare degenerative neurological disorder for which there’s no cure. But one thing gnaws at me. Compared to most caregivers, I have so many more resources. So, what’s my problem?

Physically, I am healthy. Not all caregivers are.

Most significantly, we can pay for her care without undue worry. That includes two health care aides who work weekdays. It’s not cheap. Together, they account for about 45% of Lynn’s total care. I am also fortunate to have two helpful daughters who I team with on weekends. Their help equates to about 10% of the total, meaning I fly solo the other 45% of the time.

Also, there are numerous friends and family who love Lynn and are supporting us in myriad ways. Especially my niece and sister, who, like clockwork, fly to Seattle from Salt Lake City and Northwest Indiana, drive down to Olympia where we live, and rent a place for five days every three months. My niece is an ace physical therapist, and when she visits, she works with Lynn almost non-stop mostly making accommodations to our house and improving Lynn’s routines.  

Then, there’s Kris, Marybeth, and Joan, who show up every Saturday at noon with Lynn’s favorite lunch from the local deli. They talk, and talk, and talk. And giggle. And garden. And inject much needed levity and normality.

Also, there’s Susan, who brought dinner over this week despite her dad dying, in Seattle, at age 98, a few days ago.

Then, there’s Vince, who knocks at the door, hands over amazing Ziploc bags filled with wonderful produce from his garden and jets. Kevin sends UberEats gift certificates from SoCal. And similar to Susan, Michael, Dan, Mary, and Travis show up with food and good cheer. And Monica. And a few of my daughters’ friends who I have never even met. If I stop long enough to reflect on these random acts of kindness, they bring me to tears.

Altogether, Lynn’s CaringBridge website has 114 people from other neighborhoods, states, and countries who are reading my manic/dorky updates, praying for us, sending supportive messages, and ultimately, seeing us from afar.

And despite this all-world support, I’m completely broken. So again, I wonder, what’s wrong with me? Why am I shattered. Emotionally bereft. Socially toxic as a result of not a short fuse, but no fuse. Why have I not just hit an MSA wall, but been completely crushed by one?

How about an anecdote to give you a feel for my sadsackness. First though, let me summarize how my work colleagues talk about me. In short, they say they most appreciate my poise, thoughtfulness, and calm demeanor. LOL.

Lynn decides to make an ice cream cone. To get the cone, she has to get into a cupboard in the smallish laundry room. She ends up repeatedly moving her wheelchair forwards and backwards in the tight space. Fast forward a few minutes. Part of the door frame lies on the ground. There’s ice cream all over the floor. And counter. The ice cream container fared poorly in this ordeal too and is now too crumpled for the top.

Because you’re rational, you’re thinking, “Big shit. The door can be repaired. The floor and counter quickly and easily cleaned. The container and top? Come on bruh, get real. Altogether, minor trade-offs for Lynn feeling a wee bit independent.”

But what you’re not factoring in is the cumulative effect of this type of experience hundreds of times over. Combined with other, way more substantive challenges, that have completely chipped away at my reservoir of patience, kindness, and humor.

I lost it, yelling, “WHY DIDN’T YOU ASK ME TO MAKE YOU AN ICE CREAM CONE?!” And then stayed Mad. Yes, you’re absolutely right, a complete and total overreaction.

There are two ways I could pivot from here. The more obvious one is to ask the question on most people’s minds, what can/should I do to better manage my anger and heal more generally? Or more specifically, when the hell is Ron going to find a good therapist? Sorry sports fans, I’m choosing the second, less obvious one, where I ask, what exactly has been MSA’s toll on me? Buckle up.

The losses are overwhelming because the challenges are multilayered. Some hard, others harder, two especially hard.

Hard

• We can’t do the ordinary day-to-day things we always took for granted because they were so easy to do. Things you mostly like still take for granted because they’re still easy for you and yours to do. We can’t go out to dinner. We can’t go for a walk. Or for a lake swim. We can’t go to Victoria for the weekend. In the end, these small things are the lifeblood of intimate friendship. Gone.

• We can’t plan for the future. Before MSA hit, we never made the time to make a list of fun future activities, but it’s still hard to come to grips with the fact that there’s nothing to look forward to on our calendar. The four of us will not be going to Spain or hanging in an Alderbrook cabin anymore. Hope for fun in the future. Gone.

Harder

• It feels like my second global pandemic with all the lockdown rigamarole. Since returning from a cycling trip to Bend, Oregon on June 1, 2024, I have been completely housebound because Lynn’s so dependent upon her meds, her bathroom, and her hospice bed. I’ll spare you the details, but her digestive system is completely whacked, meaning even day trips are too difficult to tackle. Spending a few hours at Alison’s apartment in Seattle recently felt like an international trip.

For fourteen straight months my daily routine has been the same. I wake up and wait for Lynn to ring my intercom doodad which I can’t wait to chuck in the trash. Then, absent our healthcare aides, I help her with everything, pretty much non-stop. Because MSA is like a demented dimmer switch that someone’s slowly turning, she needs more help each month, meaning my breaks have grown increasingly short. And ultimately, insufficient. Lynn mistakenly thinks if I could just get away for a few days I’d be fine. I tell her I don’t need 4-5 days, I need 4-5 months where I don’t have to cook, clean, or care for anyone. At all. Any meaningful flexibility of movement. Gone.

• We’ve had a modern marriage meaning we’ve split the work pretty evenly. Now, I’m wilting from the pressure of having to do everything I’ve always done plus everything Lynn always did. Among other things, she used to help with groceries and she did the bulk of the cooking, and all of the laundry, and half of the housework. And she called the service peeps. Now, it’s all me, all the time. I cook every meal, clean the kitchen every night, do the dishes, the laundry, take care of the trash/recycling/compost, vacuum, take care of the yard, stay on top of our personal finances, and ended up having to partner with a CPA to close Lynn’s parents’ estate for which she was the executor. That old energy saving division of labor. Gone.

Hardest

• Overwhelmed by her symptoms, Lynn has lost the ability to perspective take. She’s always been uber-caring, but now, not so much. Here’s what I wish she’d say, “I’m really sorry for what this disease has taken from you.” I’ve tried to understand this change. All I can come up with is her life is so hard, there’s not any psychic energy left for anyone else, even me. Whenever I try to express my profound sadness, she tends to take it personally, gets defensive, and immediately starts talking about her own feelings. Instead of doing the only thing that creates connection, asking follow up questions, and genuinely probing for more insight. I want her to say, “Tell me more so I can understand even better.” But it’s not going to happen. Because of MSA. Curiosity and perspective. Gone.

• I am the loneliest I’ve ever been. There’s two parts to it. The first is I’m disconnected from my friends. Because, remember, I’m housebound. On top of everything else, I keep Lynn’s social calendar. I organize friend visits for her almost daily. But ironically, I almost never see my friends. Not to mention, meet anyone new. Zilch socializing.  

On top of that, right now, my connection with Lynn is tenuous at best. We’ve always enjoyed an intense physical connection. Now, MSA has doused those flames. The mind is willing, but the body is not. Which saddens both of us greatly.

We don’t have in-depth conversations either. The other day I told her about an article I had read about “anchor offs” which you can see from our deck. These are destitute people living on boats anchored in Budd Inlet. I summarized the article, explained how they prefer the water to the streets, and . . . nothing. I’m sure she was thinking about what I was saying, she just couldn’t communicate her thoughts. She doesn’t really maintain eye contact either. So, it’s like playing tennis against a wall instead of with another person. Mark told me Lisa got a real kick out of his story about the 30 mopeders who passed us on 113th on a recent ride. I was a little jelly. Lynn isn’t able to ask about where I’ve cycled or how it’s gone. Post ride, I think to myself, she’ll never have any feel for those two hours of my life.

A few weeks ago, I told her I was thinking of buying a house in Bend. I wanted her to say, “You’re crazy” or “Cool, which ones are you considering? Show me.” Ultimately, like with the “anchor off” story, I was looking for connection. But there was none. If a convo happens in the forest and no one is around to hear it, does it make a sound? Deep-seated, profound connection, built over decades. Going.

Scheffler For The Win

Posted on by
3

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

Posted on by
3

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?

Posted on by
Reply

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

Posted on by
5

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

Posted on by
2

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

Posted on by
5

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

Posted on by
3

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

Posted on by
1

‘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.