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. :)
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 94 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. In fact, truth be told, we may have gone all the way in an empty Norwegian university swimming pool locker room. A few times. 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.
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.
A very good friend of mine has been “unlucky” in marriage. Three divorces. Although the first was so short, and he was so young, he doesn’t count it. A mulligan if you will. So, for all intents and purposes, twice divorced.
Of course, you and I both know luck has nothing to do with whether committed relationships endure.
After his last divorce, about five years ago, he looked in the failed relationship mirror, and really didn’t like what he saw, negative patterns of his own doing.
In no time at all, he fell hard for partner four. So hard, he turned to a therapist to avoid sabotaging it.
No dude in the history of dudes has ever told another dude everything they talk about with their therapist. But my friend has confided in me a bit about his therapeutic journey including his initial question of “Am I an asshole?” I could have saved him a lot of time and money by simply saying “No, you aren’t an asshole. Not even close.” But his initial question was his way of asking, “What’s wrong with me?” Which lead to, “What work do I need to do to avoid fucking up this relationship?”
Relationship Four really warms my heart. I asked him what explains his positivity and joy in this new relationship and without hesitating, he said, “We have fun together.” I herby submit that as a litmus test for any committed relationship.
I don’t know anyone over fifty who has pivoted as much as my friend. The key ingredients as I understand them—introspection, humility, vulnerability, and self-compassion. Inspiring stuff.
Fast forward to a text he sent this morning. And I quote, “And then to top the evening off, I showed M how I had spent the last five weeks secretly learning to swing dance to surprise her for her 50th birthday. Yes, that’s as much as I can manage after five weeks. I can’t dance! And I’m a slow learner.”
The low res video nearly brought me to tears. Just the two of them, swing dancing in front of a big ass swing band in a New York City club. It’s so beautiful. Because it represents so much damn growth. He’s prioritizing her happiness. And so the happiness comes back to him.
On my run this afternoon, I kept returning to the vid in my mind. And all the innumerable podcasts I’ve listened to and “think pieces” I’ve read that lament the problem of boys, and how to raise men, and how to teach masculinity.
My friend’s surprise swing dance is the most manly, most masculine thing imaginable. Because it’s the result of all the intrapersonal work he’s done.
I firmly believe the “boy-man-masculinity” discussion is completely pointless. Instead of asking, “What does it mean to be a man?”, we should ask, “What does it mean to be a decent human being?” Instead of obsessing about getting masculinity just right, we should shift our focus to the personal attributes we want all young people to embody, irrespective of their gender identities.
Especially how to be caring, kind, and selfless. I am incredibly proud of my friend for piecing together an equation that fosters those exact attributes.
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.
Recently, the Good Wife told me I am a conflict avoider. I told her I didn’t want to talk about it.
I may not communicate as much as she’d like, but my hilarious, nonstop comedy routine has to compensate. Doesn’t it?
We’re learning to work though conflict by assiduously avoiding “you” statements and instead saying how we feel and what we want. What the social scientists refer to as “soft skills”.
Here’s the relationship saving formula, just in case, in the distant future, any of you ever experience conflict with someone special. I feel ____________. I want ____________.
I shocked the Gal Pal last night when I voluntarily shared some of my innermost thoughts. I asked her, “Are you up to doing some active listening?” Half in shock, she quickly said, “Yes.”
“I feel bereft. I want UCLA to play better next year so I don’t have to go through another March Madness feeling so left out.”
After she thoughtfully paraphrased what I was feeling and wanted, and showed me real empathy, I felt a lot better.
Conflict avoider my ass. I deftly wield the softest of skills.
Dammit, I can’t take it any more. A few months ago the word on the street was Austin Reaves. Now it’s Travis Kelce.
Gerl, if you’re really interested in a long-term stable relationship, you gotta quit with the professional athletes, actors, and musicians.
Repeat after me, no public figures.
You need to find yourself a librarian who makes time for his grandmother on Sunday afternoons.
Granted, settling down with a normie may not be great for your art, but there are always trade-offs in life. If you want a family, find yourself a nice librarian and do your best to keep it on the down-low.
If asked what it’s like being married to me, I wouldn’t be surprised if the Good Wife borrowed from Janice Min who recently said of Netflix, “Everything was completely amazing up until it wasn’t.”
“If I had known that this drinking-glass situation and similar arguments would actually end my marriage—that the existence of love, trust, respect, and safety in our marriage was dependent on these moments I was writing off as petty disagreements—I would have made different choices.
I could have communicated my love and respect for her by not leaving tiny reminders for her each day that she wasn’t considered. That she wasn’t remembered. That she wasn’t respected. I could have carefully avoided leaving evidence that I would always choose my feelings and my preferences over hers.”
In one portion of my first year writing seminar, my students and I explore the concept of romantic love and the notion of “soulmates” more specifically. Next fall, in that context, we will read this essay. Eighteen and nineteen year olds don’t even remotely think about romantic relationships in Fray’s suggested terms because no one ever asks them to. In my teaching experience, when they are challenged to, they routinely rise to the occasion and reveal genuine maturity and depth.
More broadly, if you want to invite me to a dinner party, I would enjoy using this excerpt as a case study of sorts to engage other couples about the relative health of their relationships. It would be thrilling because it could go spectacularly wrong, but even then it would be revealing to hear people’s different perspectives on Fray’s telling of his divorce story.
Or I suppose, we can just keep talking about Elon Musk, the price of gas, and the weather.
The Good Wife and I are in marriage counseling, not because our relationship is bad, but because we want it to be better.
I deserve no credit for this, the GalPal has taken all the initiative. And therein lies one of the challenges. I think we should be able to improve things on our own if we carefully consider the different dynamics of the alternating peaks and valleys of our partnership. And then accentuate the positive and eliminate the negative. You know, easy-peasy, just use more of our brain power.
Now I know that assumption is terribly flawed. We can’t think our way to a better relationship, it’s much more about heart, and dare I say, feelings. If it has anything to do with intelligence, it’s solely emotional intelligence.
Our counselor diagnosed our main problem quickly in a way that resonated with both of us. Most of the time, when we try to resolve conflicts, one or both of us are too angry, or emotionally “flooded” or “unregulated” to show genuine care for one another and have a constructive conversation. We ignore the flooding at our own peril, proceeding to get more and more angry, and ultimately, saying hurtful things we inevitably regret.
One epiphany came when our counselor asked each of us to describe the physiological changes we experience during the initial stages of a challenging conversation. The GoodWife aced that quiz describing in some detail several physiological changes. The weekend warrior athlete who constantly assesses how his body is or isn’t functioning while swimming, running, and cycling, couldn’t describe a single physiological change; earning a donut hole on the quiz.
The point of physiological self-awareness is to make sure we only enter into challenging conversations when each of us is regulated, meaning sufficiently calm to engage in a kind and caring manner.
I wasn’t as embarrassed by my total lack of physiological self-awareness as one might think, more intrigued. How can that be? Why the hell is that? That realization has me now trying to get into some kind of touch with my physiological married self. To quote Bill Murray, “Baby steps.”
I think the answer to “how can that be” and “why is that” is two-fold. I had two great parents, three older siblings who I tried to watch and learn from, and an overall positive childhood, but there was no intentional or deliberate conflict resolution or social-emotional teaching or learning more generally going on in our house. Ever.
Nor was there any intentional or deliberate conflict resolution or social-emotional teaching or learning going at any of the K-12 schools I attended. Extra-curricular activities included. Sunday School and church youth groups included.
So it’s not entirely surprising that I failed the quiz.
By this point, my older sissy has stopped reading, thinking to herself, “Ron, it’s not all about you.”
It’s too bad she checked out because I know my experience is that of damn near every male growing up in these (dis)United States in the late 20th and early 21st centuries. We talk about “food deserts” in poor communities, but what about “emotional deserts” in every community, irrespective of economics?
What would emotionally intelligent parenting for both boys and girls look like? What do emotionally intelligent parents know and what are they doing that’s different?
How can educators, coaches, art and music leaders, youth pastors, anyone in youth leadership positions begin fostering emotional intelligence?
How can parents better partner with other adults in their children’s lives to help their sons and daughters develop some semblance of emotional and physiological self-awareness?
We need more attention and better reporting on these things. Meaning engaging and accessible stories that will educate and inspire ordinary people who only know what they’ve experienced. Stories that spark imagination, challenge the status quo, and foster new and better ways of relating to one another.
Pressing Pause 