Tag Archives: writing

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.

Trying To Keep It Real

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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.

Slow Learners

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Us Democrats.

Did you see the story about the Mad King and drug prices? Here’s an overview from (cough, cough) Fox Business News.

“President Donald Trump used the story of an overweight friend getting weight-loss medication at a much lower cost overseas to illustrate why he’s working to cut prescription drug prices for Americans. 

Speaking to Fox News’ Sean Hannity earlier this week, the president said one of his ‘slightly overweight’ friends purchased what Trump called a ‘fat shot’ in London for significantly less money than in the U.S.

‘He called me and he said, ‘Hey, strange thing happened. I just bought a drug, same company, same plant, same everything, everything was the same. In one case, I paid in New York $1,300 and in London, I’m paying $88,’ Trump recounted. ‘He said, ‘What’s going on?’”

I heard multiple Demo opinion leaders rip the MK for flippantly using ‘fat shot’. They probably preferred “weight control injection”.

More important is what Fox left out of its own reporting on its own interview. At the end of the story, the MK smirked and added, “I told my friend, it’s not working.”

Demo opinion leaders were appalled. How dare the MK call his friend fat. They were genuinely upset. Uncouth. Not presidential.

I wondered, were they asleep from 2016-2020?

The Mad King’s secret sauce is the contrast with all the politicians who came before him who said exactly what they thought everyone wanted to hear, not necessarily what they were thinking. And his contemporaries who regularly measure their words too closely to connect with anyone.

People dig the Mad King for saying things no one else will. Telling his friend his “fat shot” was not working harkens to the middle school nature of my friends’ group text.

Sometimes I wonder whether some Demos have had their sense of humor surgically removed. Telling his friend his fat shot was not working was rude, crude, and funny. People like that it’s unexpected and not at all presidential. That’s the point. That the Demos still don’t get.

Some Demos are trying to get it by using the “f” word more often. I agree with Michael Adam’s take on that.

“I think that in the case of the Democratic candidates … the swearing reflects their sense of crisis,” said Michael Adams, a lexicography expert and author of the book “In Praise of Profanity.”

The Mad King’s calculus is “If all of your peers are trying to appeal to the largest possible audience, do the opposite.” Talk like and to non-elites, who greatly outnumber the humorless, and too polite for their own good elites.

Why Not?

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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.

 

I Drive A Tesla (E)

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Hi, my name is Ron, and I drive a Tesla.

I’ve labelled this “explicit” because DanDanTheTranspoMan is the last person in the room with some semblance of clean cut, Midwest values. And he doesn’t like it when I write like George Carlin talked.

I bought a red Model Y with a tow hitch for the two-wheelers two years ago. The frictionless purchase process makes you wonder why anyone ever subjects themself to the conventional dealer experience. Brilliant.

And it’s outstanding transpo. Utterly amazing. There are are innumerable things to criticize the CEO (in name) about, but those who criticize the cars are being disingenuous.

Two weeks in, I somehow avoided a crash in Bend, OR as a result of one of the computers which stopped the car much more quickly than I could’ve. I also dig how it silently and ever so smoothly and slowly creeps in and around parking lots and in inner city Oly. With the home charger, it’s always ready for a good time. And it’s a fast motherfucker.* Rest assured, I’ll never be pinched in entering the fwy.

Of course, there are a few downsides. The insurance costs. The automatic wipers have a mind of their own, so much so, I have to manually set them. Oof, and most especially, the depreciation.

Oh, and I almost forgot, there’s the enriching of one of the most loathsome of the 8.062 billion people alive today.

And the increasing grief that comes with being associated with him. Which just recently started with this winsome greeting from a fellow driver, “You fuckin’ douche bag.” I told friends, I didn’t recognize him, but he obviously knew me! And yesterday, a woman on the other side of the road flipped me the bird.

Normally, being a modern, sensitive guy and all, these “greetings” would leave a mark. But these are not normal times. Both times I was picking up prescriptions at the pharmacy for my ailing wife. Caring for her has changed me. What constitutes a problem keeps getting redefined. The bar, for what gets to me, keeps getting raised.

The other day, on a cycling reprieve, I got soaked in much more rain than I had anticipated. I thought to myself of the revered philosopher, Jay-Z, and his “99 Problems” treatise.

Ninety-nine problems, but a bitch ain’t one
If you’re havin’ girl problems, I feel bad for you, son
I got ninety-nine problems, but a bitch ain’t one – hit me!

I’ve got ninety-nine problems, but being soaked, cold, and filthy ain’t one I thought to myself.

Maybe that’s why I laughed to myself when the rando woman flipped me the bird yesterday at the Fifth Street circle.

Then I thought I should probably prepare for the next encounter and the next. My plan is to channel the restaurant or Airbnb owners when they get scathing reviews. Something along the lines of, “I am sorry my car purchase has angered you so much. But thank you very much for your feedback. Please know I will take your middle finger and/or invective into consideration as I work to be a better person.”

No doubt my mix of zen and humor will disappear if and when my car is vandalized. If I parked it downtown with any regularity, there’s no doubt that would happen sooner than later. I have a $1k deductible, so fuck you in advance.

So maybe I should trade it in for something more socially acceptable. Which of course, doesn’t solve the larger problem. Still, in prep for that possibility, please let me know which carmakers you approve of so I may avoid offending you in the future.

*Now that DDTTM isn’t over shoulder, I feel freed up.

People Are Cheering Fifteen Percent?

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My writing about my family’s experience with Lynn’s Multiple Systems Atrophy has resonated with a lot of people here and on our CaringBridge site.

A recurring theme is they appreciate the “honesty”. And how I sometimes use humor to lighten things. And many of my readers, like me, are also “on the back nine” and so final chapters are more relevant than if I had a younger, hipper readership.

Honestly though, the “honesty” feedback perplexes me because I feel like I’ve only been able to paint about 15% of the picture. There’s way more that I’m leaving out than I am including.

But maybe, everything really is relative, and people are used to even far less transparency?

Of course, it’s impossible to perfectly quantify how much someone lets their readers in. Just know, when you listen, read, or watch anyone’s story, there’s always way, way more to it. Always.

Why aren’t you and I more forthright with others? More vulnerable? More honest especially about what’s most difficult. And about our related, negative emotions?

As a male, I have the excuse of not having been encouraged to communicate my emotions growing up. But I’m sure that’s true for boatloads of women too. And so that’s a lousy explanation that really doesn’t get at my reticence to be more honest.

Another explanation that I’ve touched on previously is not knowing how to be more honest without compromising others’ privacy. Hell, the picture I included with the last post, I got in trouble for it. Because it was a “tender moment”. Which is exactly why it was such a good picture. So there’s that. Lynn didn’t want me to share her tenderness with you. So what’s a writer to do?

Maybe, if I outlive her, and the odds in Vegas are that I will, I’ll be freed up to paint far more of the picture. Even 16-17%.

Women For The Win

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My wife’s debilitating illness has given me a front row seat to a profound gender dynamic. A dynamic that informs today’s mostly mindless discussion of masculinity.

First, even before we dive in, let me muddy the water a little. Some men, albeit small in number, are superseding the ways males are typically raised.

Cases in point. When we moved into the new crib 11 months ago, Travis, unannounced, showed up with dinner for us on the first, exhausting night. A few weeks ago, Michael dropped in with (amazing) carrot cake and two loaves of Wagner’s (amazing) cinnamon bread. Allen (okay, sure with Patty’s help) baked dinners and drove over hill and valley to lighten our fall when I was teaching. Brian fills Lynn’s hummingbird feeder and repairs her recumbent.

National Public Radio ran on oddly common story on it’s website last week about a dying woman who needed lots of home care. A female friend of the woman ended up singlehandedly providing most of it until the very end.

I would’ve placed the odds of the woman’s key caregiver being female at 95%.

Almost exclusively, my wife’s female friends have taken action. The men in our orbit, on the other hand, have almost always offered sympathetic words. One close male friend recently sent me an email in which he said, “Let me know if I can do anything to help.” That, as it turns out, is the male default. It’s safe. A way to maintain distance. A sure-fire way to not be too bothered.

To my “one close male friend” who I hope isn’t going to read this, I need so much help I don’t even know how to start articulating it.

Most women, in my recent experience, don’t wait around for a guidebook on how to help, content not to receive it. Instead, a larger proportion of them move towards people in need.

Joan heard Lynn say she wasn’t enamored with the industrial gray plasticware I purchased on-line for her. So she showed up one day with much spiffier tumblers. Vivian routinely shows up unannounced with soup and gets down on her knees and huddles with Lynn when her body shuts down. She doesn’t really bother to email or text, she just appears at the door.

I watch Little Chris during one of her regular visits and tell her, “Man, you are so skilled and comfortable at meeting Lynn exactly where she is. It’s a beautiful thing.” She proceeds to tell me that when she was in high school, she cared for a housebound woman every day after school for a few years. And how formative that experience was. I don’t know if Little Chris had a brother of similar age, but if she had, I’m 95% sure her parents would not have suggested him for the job.

We expect girls and women to be nurturing as if they’re somehow uniquely built for it. We give boys and men a pass in the form of exceedingly low expectations. And so most males don’t develop that wonderful female instinct to act. Not to wait to be told how to help, just to show up. To look ailing people in the eyes. To hold their hands. To help them get undressed and dressed. To feed them. To console them. Until the end.

More men will be more hands-on caregivers when we expect boys to be more nurturing. Absent that expectation, women will continue do the vast majority of kind-hearted caregiving.

What a Life

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Anyone out there? Anyone? Yes, still alive. Do note however, that I did not go so far as to say, “Alive and well.”

But there’s enough negativity in the air without me adding to it, so today I’m all unicorns and rainbows.

I just wrapped my semester of teaching first year writing and a course titled “Multicultural Perspectives in Classrooms”.

I’ve only told the inner circle, of which you are now a part, that it might have been my last rodeo.

So let’s fast forward to Grace, a first year writer, and the last day. Grace is a black belt in tae kwon do. In her paper on social infrastructure, she wrote beautifully about her tae kwon do studio where she grew up and now teaches.

There are two types of students, those genuinely seeking an education and those simply wanting certification. The later sacrifice curiosity for figuring out “what the teacher wants”. Other “tells” are how they tune out their classmates and focus intensely on grades. Not their fault I have to remind myself. Our factory model of education tends to socialize students to prioritize product over process, but I digress.

Grace was all education from the beginning. Her eyes locked on mine from the jump. Near the end of the last class, an informal day of peer editing small groups, she asked, “Do you have any more advice for us?” I thought that was sweet, since I understood her to be saying she didn’t want our time together to end.

Flashback. December 1993. Guilford College. Greensboro, NC. The end of my first college course, a small senior seminar. I waxed philosophic for probably ten minutes using as many ginormous words as I could muster. Reminding my students of all they had been blessed to learn under my tutelage.

At the very end of the sermon, a hand. “Ah,” I thought, “Josh is going to thank me for changing his life.”

“Dude! You have a pierced ear!” Josh’s observation inspired his classmates to chime in on why the hell I had never worn it to class. Things quickly spiraled down. In the end, no one thanked me for the sermon or for changing their lives.

Back to Grace. Still haunted by Josh, in response to her question I said, “No, not really.” The look of disappointment inspired me to add, “Well, just keep doing exactly what you are and you will flourish.” Weak, I know.

An hour later, I was making a quiet get-a-way. As I entered my car and looked across the parking lot to see if I could pull out, there was Coleton, Hudson, and Lily walking side-by-side in my direction. All three of my first year writers smiled at the surprise interaction. I lowered my window and asked whether Coleton, wearing short sleeves in December, ever gets cold, and we made some more small talk. I had no idea they were friends outside of class, a class whose theme was “The Art and Science of Human Connection”. Obviously, they had connected. “My work here is done,” I thought to myself.

During that final week, after recycling a quarter century of paperwork, I texted the Good Wife, “My take-away. I’ve done a lot of good work. For a long time.”

Then Makida, a talented young writer from Ethiopia, wrote me. “I wanted to let you know how grateful I am for the incredible impact you’ve had on my first semester. It’s been almost six years since I had a teacher who made me love learning as much as you have; my 7th-grade chemistry teacher was the last, and he has always been a special figure in my life. You remind me of him in the best way, with your encouragement, kindness, and ability to bring out the best in your students.”

And Jordan. “Thank you for providing a space of enlightenment and discomfort for my brain this semester. I feel as if I had the ability to grow a lot.”

And Emma. “I’ve had a hard time putting my appreciation for you and your class into written words. This was my last semester at PLU, and I feel so grateful to have had a chance to learn from you before my undergraduate journey came to an end. I typically struggle in humanities classes because I’m not a very talkative student; but something about the way that you structured your course made it easy for me to participate and engage. You have an accepting and approachable energy that makes your students feel comfortable having brave conversations in class. . . . I’ve taken a lot of difficult classes at PLU, but none of them challenged me in the ways that this course did. I came into this semester thinking I knew a lot about education from my mom, but I never realized just how much there was to learn. You said on the first day of class that the skills we would learn in EDUC205 would be useful in many different careers and areas of our lives. While I still don’t know if I’ll ever teach, I know that I’ll use the lessons I learned in your class to make an impact on the world in some way. I think that regardless of their vocation, everyone should take a class like this. The multicultural introspection and reflection that I experienced was more valuable to my career as a physician than any biology course I’ve taken in my time at PLU.”

These messages made me want a do-over with Grace, but it was too late. In hindsight, my advice to her and her classmates would have been to pursue work that does more than provide economic security. Find work that enables you to make a positive difference in others’ lives. Work that enables you to express your values. Work that is mutually rewarding. Do that, and you won’t consider it work.

How To Be More Honest?

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Having blogged for a decade plus, I run the risk of repeating myself. But maybe you’ll forgive me if I come clean about it.

In September, 2018, I started a post titled “What We Get Wrong About Honesty” this way:

That it’s mostly telling the truth to others. But being honest with one’s self is a more essential starting point, and because we lack any semblance of objectivity, far more difficult.

None of us are ever completely honest with ourselves.

Especially as a writer, I want to be more honest with myself, and by extension, my readers. I suspect that starts with more honest internal dialogues.

My older sissy said something seemingly innocuous to me awhile back, that I can’t stop replaying in my head. I was telling her I want to really improve my freestyle swimming, but it’s hard given the years of imperfect muscle memory. I explained that I had checked a book out of the library that broke the freestyle stroke down and had watched lots of youtube vids.

I thought I had made a convincing case that I wanted to improve, I for sure had convinced myself, but when I came up for air, she offered this brutally matter-of-fact reply, “No, you don’t.”

Staggered by her honesty, I forget what came after that.

As soon as I regained my footing, I realized she was right. My efforts to improve were superficial at best. I hadn’t worked with a coach. I hadn’t used video. I hadn’t committed to the drills that help improve one’s catch.

Despite saying I want to improve, my elbows still drop, I still slap the water, and I don’t rotate nearly enough. My stroke is a mess, but that’s not the point. The point is, with no coach, with no video, with no commitment to drills and going slower to eventually go faster, I should stop lying to myself about wanting to improve. I should just accept that my stroke will always suck.

Of course, my shite freestyle doesn’t matter, at all, but the all important question raised by my sister’s “No, you don’t” is what else am I lying to myself about? Surely, lots of stuff of far more consequence.

I may never have high elbows, but can I learn to be more honest with myself, and by extension, you? I don’t know. But I think I’ll try. Just don’t tell my sister.