Hot damn kids, real internet today. Now, the only problem is your intrepid reporter is completely shelled. Not enough strength in my fingers to type much.
Ride report could be titled “Teamwork Makes the Dreamwork”. The first half of today’s ride felt like a ride through the set of Breaking Bad. I was half expecting to see Walter’s and Jesse’s RV around every bend. And I coulda used some cocaine!
Once we hit the highway, the Bay Area Boyz drilled it. All. The. Way. In. They make them tough in NorCal. When Griffin was repairing a flat, Blair told me he once did 300 miles in 20 hours. LOL. If it wasn’t for the BABs, I would’ve ended up as half-melted roadkill. Massive pull after pull that Griffin and I took full advantage of all morning.
It was in the mid-90s at the finish
Dunno if I can recover in 18 hours. Probs need more like 18 days.
And so it goes.
The Michiganders check out a desert dragon. Frickin’ Griffin. The Kind of Flats.Drug of choice. Shoot that potassium straight into my veins.
“On Thursday, a woman named Sharon from Minnesota called into C-SPAN’s ‘open forum’ to express her despair about the cost of living. ‘I’m 65 years old. I’m legally blind. I’m on disability. I went to my doc, and I lost 28 pounds in the last year. I did not need to lose 28 pounds. I did not try to lose 28 pounds. I lost the 28 pounds because I cannot afford to eat anymore,’ Sharon explained, speaking clearly even though she sounded near tears. Because of Trump administration cuts to the Supplemental Nutrition Assistance Program, and the high cost of groceries, gas and electricity, Sharon only allows herself $65 a month for food.”
Everyone once in awhile, a reader enlightens me. This especially poignant example is from Richie, who I had the privilege of teaching and playing noon basketball with in Greensboro, NC back in the day. If Richie was just a little taller he would’ve been an NBA point guard instead of a distinguished social scientist/author.
“I have gone to the big protests (Hands Off, No Kings, with casts of thousands), and now for many months I have been spending Tuesdays, from 12-1, with a group of 20-30 protesters, at an intersection in Friendly Shopping Center, outside Senator Thom Tillis’ Greensboro office. We all hold signs, some of which are easily read as people drive by, especially when they have to stop for the light, and some of which may not be so easy to read depending on how much text there is, and how fast the car or truck is going. On a typical day, many drivers honk their horns in support, many give thumbs up, and some roll down their windows and thank us for being there. For every 20-25 such indications of support, there will be one person who gives us the finger, or thumbs down, or yells at us to “get a life” (at which point I usually remark to whoever is standing near me that they used to yell ” get a haircut”j.
Some of my fellow protesters — mostly but not all, older, mostly white — go to another protest on Thursdays, on Wendover, on a bridge over the road, where it is probably harder to read the signs, and no one stops to converse.
I doubt that the weekly protests, or even the big Hands Off or No Kings protests, change people’s minds. Rather I think they remind people, including politicians, that many Americans (and, today, people attending the Olympics) are outraged by what is going on. They remind people who do not like what is happening that they are not alone, even in the reddest of states. For me personally, I rarely think I am changing anyone’s mind. Mainly I consider it a form of therapy. It.makes me feel better, that I am not just phoning our awful Senators and congresspeople (which I sometimes do), or giving money to causes that I support, but doing something that might in a small way contribute to the extensive evidence that people are horrified at who we have become.”
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. :)
Increasingly, it’s obvious that the more “plugged in” to the news, the more “on-line” one is, the worse their physical/mental/spiritual well-being because media algorithms know that outrage is the surest way to attract and keep eyeballs, and thereby sell advertising. As a result, outlandish opinions dominate. And once you and I are sufficiently outraged, we can’t unplug.
So if you and I want to maintain whatever sanity we have, we should intentionally tune out the news. Learn to leave our phones behind on occasion. Step away from our keyboards. Not watch as much t.v., or more likely, stream television clips.
Ignorance may in fact be bliss, but it also empowers those in power, because the more uninformed people are, and the more apathetic, the more free elected officials are to do as they please.
So what are we to do? Localism is the answer. Or a variation of the popular phrase that you no doubt remember, “Think globally, act locally.” Instead, maybe we should, “Think locally and act locally.” I’m advocating for a type of grassroots accountability, starting with ourselves and then branching out to where we live, trusting that if we do right by those we’re in closest relationship with, our county, state, country, and world will be okay in the long run.
So, in this way of thinking, we don’t get embroiled in fighting about national policies or current events. Instead, we recognize that our attention and energy are finite; consequently, we focus on being better partners, parents, and friends to those we live with, next to, and near. We go to the farmers’ market and initiate conversations with those closest to us.
Recently, someone, on-line ironically, asked a great question that gets to the heart of localism. They asked, “Do you know the name of the person that delivers your mail?”
I don’t. Why? Because I’m usually on my computer when she visits each morning.
Great title, Ron. What’s the opposite of clickbait?
The rollercoaster that is living with and caring for someone with Multiple Systems Atrophy careened down to the bottom of the track Tuesday late afternoon/early evening. Lynn’s body shut down. And I couldn’t understand a word she was saying. This was late into a long two-day stretch without our normal a.m. help. So I wasn’t in a good place, and Lynn, of course, was in a much worser one.
Then the 5p meds and my amazing dinner kicked in and she bounced back enough to ask, “What would you do?” And so, I told her.
“I’d probably give up. It’s hard to know for sure, but yeah, I might throw in the towel and let nature run its course. You’re way tougher than me. Which is kinda ironic isn’t it, since I often said you were too damn delicate? Yeah, in the end, you turned out to be way tougher than me. Maybe I have some Erwin Byrnes in me.”
Then I told her that a not inconsequential subset of people on the MSA listserv choose death with dignity or they voluntarily stop eating and drinking. Because they want to assert some modicum of control over the downward spiral.
In the past, after reflecting on her mom’s decision to stop eating and drinking in her final two weeks, she’s said she’d do the same someday. That time is not now, but her will to live isn’t what it appears on the surface when she flashes her golden smile. Her will to live is gradually flagging. Hence her question, “What would you do?”
Last night J asked her if she enjoyed visiting with her college roommates online and she surprised J by saying, “Not really.” Having eavesdropped on the conversation, I intuitively knew why. Because she will not be giving a toast at either of her daughters’ weddings. And she will not be traveling anywhere. The roommate’s normal catching up was a painful reminder of things lost and how her world keeps getting smaller and smaller. Of course, they didn’t intend for that, and they didn’t realize it because of . . . the golden smile.
Lynn’s question, “What would you do?” prompted me to think even more deeply about her daily life. Yes, I am a complete mess right now, but I’m going to get better. And I’m going to renew my passport next year, and I’m going to catch up with you hopefully, and add lots of events to my calendar that I’ll look forward to. I am bullish on the future.
What does Lynn have to look forward to? Or maybe, more immediately, what brings her joy? Me, especially when I’m okay enough to joke around. The labradude appearing suddenly under the wheelchair. Picking dead leaves off the tomato plants. SchittsCreek with the hijas. Saturday lunch with the gfriends. Always, Saturday lunch.
For me, I don’t know if that would be enough. If I was her, I’d feel almost entirely like a spectator of others’ lives, not an active participant. I’m not sure I’d feel enough purpose to keep fighting through all of the adversity. To be so damn dependent upon everyone for everything. Again, she’s starting to wonder if it’s enough too.
Whether to passively live as long as possible or more actively speed up the dying process a little or a lot is a deeply personal question upon which reasonable people disagree.
One thing I know for sure however, is that everyone who is dying slowly, should get to decide for themselves what to do, if anything, without any outside pressure. That’s why I keep telling Lynn my probable throwing in of the towel doesn’t matter. That she gets to decide how to live out her ninth inning. Which is one important factor in the move to an adult family home. She will be cared for by pros, not a shattered, amateur, impostor of a caregiver.
In saying I’d prob let nature run its course, I also shared my way of thinking about death which took shape following my dad’s sudden death when I was 33. At first, I was mad at the world that I’d never get to find out where our newly evolving friendship was headed. That he didn’t get to hold Jeanette. That so much promise was cut unfairly short. Then, somehow, I consciously pivoted to celebrating our nascent friendship and all the positive memories I had of him growing up.
My intentional approach is “choose to celebrate” all the positive memories instead of being eternally upset that the movie cut off before the ideal end.
I told Lynn not everyone lives 64 years. And not many people have as fulfilling a 40 years (38 married) as we’ve enjoyed. I told her that, eventually, I will be okay, largely because of all the positive memories we made. She seemed receptive to my quirky thinking, but I can’t be entirely sure. Equally possible, she thought, “How did I get stuck with a bonafide whacko?”
I just don’t think we can do both simultaneously, we have to choose one or the other. I choose to celebrate. Is it a panacea for softening the blow of loss? Does it speed up the grieving process? No and probably not. Is it better than the alternative? Of being mad at the world? Of staying mad at it? Most definitely.
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. 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.
Pressing Pause 