Category Archives: Spirituality

Paragraph to Ponder

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Via LOliver by way of JByrnes:

“There is so much to tend to, hold, be with, feel. May you find so much gentleness for your own process. May you let your humanity unfurl, over and over again. May the grief and hurt wrapped up in facing the world be held by your own willingness to look. May love soften the hard edges. May light soothe the dark places. May you return to your own heart’s knowing and trust what it whispers to you. May you let yourself do all of this so imperfectly, that imperfection a reminder that you are a human being, figuring it all out for the first time. I’m with you.”

Early evenings, like a lot of the time that I care for Lynn, I’m on the move. Making dinner, getting her fed, eating myself, doing dishes, cleaning the counters, taking out the trash, vacuuming the hardwood floor.

Activity blunts the grief. But I pressed pause Monday evening and it rushed in.

I stopped cleaning to dance. In the reflection of the oven, I saw the real dancer watching me. When I try dancing, she just smiles.

And now, the dancer pushes her wheelchair away from the table so that she can move toward the pretend dancer.

“You want to dance, don’t you?” Bigger smile. I expedite things by wheeling her into the kitchen. Where I help her up and embrace her. We slow dance like first-time junior highers slowly swaying back and forth.

But dammit, it’s The National singing “I Need My Girl”.

The refrain rips through. “I need my girl. I need my girl. I need my girl.”

My girl has no clue I’m crying.

May love soften the hard edges. May light soothe the dark places.

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.

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.

 

Paragraph to Ponder

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From a longer piece titled “Things I Want to Tell My Mom on Mother’s Day” by Jeanette Byrnes.

“When I developed severe OCD in 8th grade, you found me a therapist immediately. You explained to me what was going on in my brain. You explained that my OCD was separate from me, and that having OCD wasn’t my choice. You helped me make sense of a debilitating mental illness at the tender age of 13. As OCD made my world smaller and smaller, you fought it with me, tooth and nail, every day. For a year you took me to therapy, you did my homework with me, you wrote me notes of encouragement, and you sat on the floor with me as I sobbed, tortured by my brain chemistry. These were some of the most painful days of my life, and you were my safety. You made a terrifying experience less terrifying. You gave me the tools I needed to recover. What a gift you gave me.”

Where would she be, I wonder, if her mom hadn’t sat on the floor with her?

Maybe Not So Great An Idea?

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In light of my most recent example of knuckleheadedness, a faithful PressingPauser was moved to write me. “. . . let me discourage you from jumping off a bridge into polluted water.  This is in the category of photoshopping a picture of oneself dressed up like the pope.”

“More a reflection of feeling trapped,” I replied, “than just my baseline stupidity.”

Caring for my ailing wife day in and day out also has me daydreaming about taking some walks. I’ve been spending some of the rare quiet moments researching the Appalachian Trail, the Camino, and the Te Araroa. With a small backpack and no fixed timeline.

Mostly what I long for is what Jeanette wanted Saturday evening after watching Alison’s high maintenance pup for a week while she was in Chicago. No responsibility.

Nobody depending upon me for anything. For a long time. In the hope of healing.

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.

I Feel You Joe

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“Biden plans to resume campaigning,” the lead article on the New York Times website right now reports, “as more Democrats urge him to quit.”

We know how this ends. With him quitting. But man, I for one salute his stubbornness because whenever everyone tells me to do something, like find a therapist, I instinctively don’t want to do it. And the more they push, the more I resist.

Maybe that’s human nature more generally?

There is one notable difference between Joe and me though. My knee-jerk contrariness does not threaten the future of our democracy.

Human Decency Wins Again

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Life downtown means interacting with the Walking Wounded. Regularly.

Two times in as many weeks I’ve happily been ignored while next up in the grocery store check out line.

Both times the cashiers showed exceptional care and kindness to the down-and-out people in front of me. With no concern for the rest of us in line.

The first time the cashier explained that he knew the customer and always took extra time to do right by him and his guide dog. Although he didn’t need to, he also thanked me for my patience. I wish I had the presence of mind to thank him for taking his time to see the troubled person and for honoring his humanity.

A lot of people who are caring and kind normally aren’t especially either one when it comes to the homeless. Which perplexes me. It’s almost as if they’re offended by their poverty, addictions, and mental health issues. How dare they be poor, addicted, schizophrenic.

No one likes encampments in public spaces or personal property crime. But if we have to be angry, maybe we should direct our anger at ourselves for not making any more headway than we have in solving the crisis.

Granted, it’s a vexing, multi-faceted challenge. I suspect progress depends on more of us following the lead of patient, kind-hearted grocery store cashiers.