Author Archives: Ron Byrnes

What Now?

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My best friend took her last breath Monday afternoon surrounded by Alison, Jeanette, and me. It was peaceful and we’re relieved she’s no longer suffering. However, even though we had a long time to prepare for this, we don’t know how we’ll pick up the pieces seeing that she’s left a Grand Canyon-like hole in our family.

In the middle of the five last hours we spent bedside, Ebony, a Certified Nurse Assistant, who helped Lynn shower twice a week, joined us around the bed and held her hand. She only met Lynn three months ago, but she loved her like Abigail, Olga, FuFu, and all her caregivers did. Ebony talked about how loving and special she was and all I could think is how Lynn connected with all these women while at her absolute lowest point.

There’s no humanly explanation for that.

Blessed be the fact that MSA never broke her spirit. A few days ago, when a former caregiver came to visit, it didn’t matter that Lynn had stopped eating and drinking, she lit up, and flashed the smile that warmed people’s hearts.

A friend forwarded this message today from Lynn’s former student Miriam.

Her last of a lifetime of selfless acts was donating her brain to science. If you want to honor her memory please consider a gift to the Brain Support Network.

A favorite poem of hers.

The Winter Of Grief II

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My mom was 64 years 10 months old when my dad died from a heart attack while driving to work in Tampa, FL.

I’m 63 years 10 months old.

I wish I could go back in time and interact with my mom with the wisdom gained from what I am experiencing. It’s not that I wasn’t compassionate, it’s just that my compassion would be on a whole different level.

One painful insight that I’d bring to our relationship is the knowledge of how the person’s life lingers and how the trail they left offers constant memories which both deepen and lengthen the grief.

For example, today, after visiting Lynn I went through her collection of papers and books from the last few years. A literary tower balancing precariously on the piano bench.

And I stumbled across the attached picture. The crossed out “2020” speaks to some procrastinating, but I love how dang aspirational her list was. Ward Lake laps, haha. The “Oregon hill” is McKenzie Pass which I raved to her about after each of my ascents.

“Surf in Gull Harbor current” meant kayaking to the mouth of the harbor then riding the current into the harbor. Sometimes in the boat, sometimes not.

“Hike a lot” unchecked. “Hike Mt. Eleanor” unchecked. Fuck, why didn’t we go on more hikes?

The wisest thing anyone has said to me during this ordeal was a hospice chaplain who said don’t focus so much on Lynn’s mortality that you ignore your own. That was piercing. And stuck.

I wonder, what if things were reversed and Lynn had to interact with my material wake. Would she take the seven iron out of my golf bag and hold the grip seeking some sort of cosmic connection? Yeah, I think she prob would.

Here’s what I think about my own mortality. Lynn had just over four years left when she cobbled together her “Summer Fun” list. I’m guessing she assumed she had more than four summers left. I know I did.

I do not want to save up for the future, to put things off, to assume a long, healthy future.

One of the simplest ways I’m doing that may seem silly. These days, my uniform is t-shirts and jeans. I have about 10 t-shirts, some that I like to wear more than others. And I have one fave, that I used to reach for and then stop and say to myself, “I should save that for next time.” Now, I look for it and wear it whenever it’s clean. Because of Lynn.

Without being morbid, take your mortality seriously. Don’t wait. Hike. Cycle. Be on or in the water. In your favorite t-shirt.

The Winter Of Grief

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What the hell am I going to do when I can’t make Lynn smile anymore?

My go to when her lips are barely moving and no sound is coming out is to say, “Not so loud.” She likes that one.

Six months ago, I had a whole morning routine featuring her, the Slo-mo Turtle. That got pretty elaborate with the log she lived on, her forest friends, and all kinds of silliness delivered with the staccato of a nature documentary. That routinely got not just smiles, but guffaws.

Early in the week I told her I got stuck in the driveway waiting for a gaggle of Garfield Elementary students to walk by on their return from downtown. And how some of the umbrella-less boys were drenched. The former elementary teacher smiled widely at that image.

What a difference a week makes. Today, I needed Jeanette’s help to get her to muster a slight smile.

She is not in pain and was quite peaceful when I left. But she’s waving the white flag.

We’re at mile 26 of the marathon.

Money, Money, Money

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The O’Jays > Abba, but I digress.

I dig this story, “Gift to help cover tuition for students in lab medicine” for a few reasons. Mostly because the donors wanted to remain anonymous. Such a refreshing choice in this “look at me” day and age. I also like how targeted and thought out the gift is. There will surely be positive ripple effects. And of course, the recipients’ gratitude is heartwarming.

Then there’s this. “Michael and Susan Dell donate $6.25 billion to encourage families to claim ‘Trump Accounts’”. Not anonymous, and a very unfortunate name, but a staggering amount that compensates for both of those things.

Both are interesting in the context of this The Nation pod, “Liberal Philanthropy and the Fight for Democracy“. Sentence-long summary, “As powerbrokers of the elite, liberal philanthropists are averse to challenging ‘the systems that spawned them.'” One does not have to be as far left as the typical The Nation reader/listener to conclude that we’re far too dependent on the capriciousness (and ego) of the oligarchy for the infrastructure and safety nets we desperately need. What we need is the the dependability of a more progressive tax structure.

Yours truly just sold some AAPL purchased in 2011. The initial investment was small, but the shares appreciated over 2,000% in the fourteen years, resulting in a large sum. Which I will now gift to several nonprofits.

In revealing that, I’ve violated my fave philanthropic move, remaining anonymous. And, I’ve also sidestepped considerable capital gain taxes.

I can live with those demerits because I do not aspire to be in any pantheon of modern-day philanthropists. My aim is simpler. It’s to honor the memory of those who’ve been generous with me and to transmute the incredible luck I’ve had as an investor into tangible contributions to the common good.

“Keep Your Hand On That Plough, Hold On”

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Science has no answers for Multiple Systems Atrophy. Some day it will, but until then, I lean heavily on the humanities for sustenance.

Ian McEwan is on my Mount Rushmore of writers. Presently, I’m reading his most recent novel, What We Can Know. The main character is a former academic caring for her husband who is suffering from Alzheimers. I marvel at McEwan’s ability to evoke that world. A hyper creative, all-world imagination that deeply moves me.

Then, a week ago, I stumbled upon a Robert Plant/Saving Grace Tiny Desk concert. Plant’s voice, at 77, is more bluesy and folksy than rock and roll. Major props to him for continuing to create. And for moving me. Deeply.

Lynn’s hearing is about the only thing M.S.A. has spared. So I shared this song with her. All I know to say to her now is, “Keep your hand on that plough, hold on.”

Matthew, Mark, Luke, and John, all them prophets dead and gone
Keep your hand on that plough, hold on
Never been to Heaven, but I’ve been told the streets up there are lined with gold
Keep your hand on that plough, hold on

Hold on, hold on
Keep your hand on that plough and hold on

Mary wore three links of chain, every link was Jesus’ name
Keep your hand on that plough and hold on
The only chains that we should stand are the chains of hand in hand
Keep your hand on that plough and hold on

Hold on, hold on
Keep your hand on that plough, hold on
Hold on, hold on
Keep your hand on that plough and hold on

Hold on, hold on
Hold on, hold on
Hold on, hold on
Keep your hand on that plough, hold on

It’s Happened

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A large part of the rationale for the move to the Adult Family Home three months ago was that I could recover, and therefore Lynn and I could heal and get in sync, and spend whatever time is left as positively and peacefully as possible.

I am not in a good place, but a much better one. Way, way less stress. FuFu, Alison, and Jeanette, among many others, have saved me.

As a result, for the last two months, Lynn and I have enjoyed my visits. We look at photo albums. We listen to music. I tell her about my day. We loop the hood.

Most of all, we touch. I hold her hands and massage her calves. She hugs me tightly as if she’s not going to let go. We press our foreheads against each other. I caress her head as she falls asleep. We kiss.

It’s how we communicate.

I’ve never partnered with someone who is dying, so I’m improvising. All the time. What to say?

Last week I kneeled on the floor next to her hospice bed as she cried before napping. I told her I loved her and that she was okay, which of course, was untrue. Then I told her how sorry I was for what she’s experiencing. And that she’s been fighting it every minute she’s been awake for a few years and that was why she was completely exhausted. And that I wanted her to Rest even if that meant being alone. I told her how much I am going to miss her. More tears.

Then I told her she wasn’t alone and wouldn’t be alone. That she is bearing the fruit of having built such a caring and loving family.

We have had a much more intense relationship than you would probably guess. Intensely good most of the time, intensely bad some of the time.

I told her I was skimming an old Apple Note I wrote from when we were in marriage counseling five or six years ago. And how my one regret is all the time we wasted being mad at each other. I asked her to forgive me for being so stubborn and selfish. More tears.

I suspect she wanted to say something similar, but I was okay with her not being able to because I wanted to take most of the responsibility for our epic, sporadic struggles.

Even though we wanted to at times, I told her we never quit, and that was something.

In hindsight, we probably wasted 10% of our time together being too mad at each other to thoughtfully interact. Even though we learned to repair things, 10% of 38 years is almost four years! What we would do to have four years back.

More than Lynn, I accepted that we were never going to coast conflict free like some couples seemingly do. That the heartache was part and parcel of the intense intimacy. Again, in hindsight though, I wish we had far fewer, less intense conflicts. Fewer days where we couldn’t even talk to one another.

My unsolicited advice. Don’t take whatever committed relationships you’re in for granted. Be as proactive as you can. Trust one another enough to talk about what lies below the surface so that resentments don’t build up. Learn to listen and get more comfortable probing your partners’ feelings. If possible, by yourself, or together, enlist the help of a professional to learn to have fewer, less intense conflicts.*

Most of all, don’t assume you have many years and decades left, because you may not.

*LOL, I’m gonna get slammed for that wee bit of hypocrisy. :)

Paragraph To Ponder

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From The New York Times.

Confronted with allegations that they had cheated in a course and fudged their attendance, dozens of undergraduates at the University of Illinois Urbana-Champaign recently sent two professors a mea culpa via email. But, according to the professors, artificial intelligence had written the emails.