This morning, on my final Lynn CaringBridge post, I wrote, “Lynn’s memorial is going to be lit.” The truth of the matter is I’m dreading it.
Largely because almost all of Lynn’s most special friends will be there, but she won’t be. What she would give to be able to look each person in the eye, smile, and hug them one more time.
If you’re at the memorial and wondering what I’m thinking it’s, “I really, really wish Lynn was here to see everyone whose lives she touched and to enjoy their company.” Remember, she loved parties.
Last night, Alison asked me how I’m doing. I explained that it all depends upon the level of distraction. Like most people these days, I’m pretty damn good at distracting myself from the permanence of the loss that I wrote about previously. Landman, estate executor details, Facebook reels, UCLA portal comings and goings, U.S. imperialism and related bullshit, etc.
When someone thoughtfully checks-in, like Ali, and I’m forced to stop and remember all that’s been lost, I’m immediately overcome by emotion. I cried in the kitchen.
For me, Saturday afternoon will not be lit. Absent any distractions, I will be a complete and total mess.
I’m approaching the event mindful of what basketball analysts say an offensive player should do when going against a fearsome shot blocker/rim protector. The inclination is to opt for finesse, maintain a safe distance, and lob something high arching up and hope for the best. Counterintuitively, the advice of the best basketball minds is to negate their strengths by driving right into them. Or as the kids say, “Getting up in their grill.”
That’s what everyone coming together Saturday afternoon is going to help me do. Get up in the grill of grief. Jumpstart it. Press “fast forward” on the process.
Prob, so much so, I’ll be fine Sunday morn. Right?
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.
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
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.
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%.
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.
“Starting January 1, 2020, Timberland Regional Library is no longer charging overdue fees on our collection materials. In addition, we are currently working with our system vendor to remove existing overdue fines. Why are we making this change while facing budget challenges? Research has shown that overdue fines act as an emotional barrier for many people and create a disproportionate financial impact on many in our communities. Library fines represent less than 1% of TRL’s overall revenue and data indicates that it is costing more in staff time to collect overdue fines than TRL receives in fines revenue. We’ve heard from patrons who have stopped using library services altogether because they can’t pay their fines, or they worry about being judged for being unable to pay. They’re not attending programs, accessing online resources, asking for help in finding a job, or utilizing the library in any other way that would enrich their lives. Eliminating overdue fines is a means to bringing people back into the library and supporting our communities.”
Don’t take advantage though.
“Patrons are still responsible for ensuring that items are returned by the due date. This Fines Free policy does not impact fees for lost and damaged items, those charges will remain on patron accounts. Items overdue for longer than 28 days will be considered lost, and patrons will incur a replacement fee for the item. Accounts with more than $10 in fees will have their borrowing privileges suspended until the item is returned or the replacement fee is paid.”
1) Have you noticed? Increasingly, bloggers are inserting numbers into post titles to increase readership and improve search engine rankings. “5” has replaced “3” for most popular number. “17” is trendy too. I don’t know why numbers increase readership and improve search engine rankings. I find it disingenuous at best and insulting at worst. As if all anyone can process anymore is a list. My one-time use of it here is sarcasm. I should start a movement. . . force a number into your title and we’ll refuse to read what follows. Who is in?
2) Imagine a world in which everyone reads and discusses books with people different than them. My favorite story from last week.
3) The Seattle Mariners are the best team in baseball when it comes to this.
4) Is this a trend. . . dad’s helping grown daughters who aren’t necessarily interested in their help? I’ve never offered unsolicited advice to my daughters. . . that’s an additional serving of sarcasm. One of my daughters’ friends laughed at her dad for sending her an article on “How to save and invest money”. Another “couldn’t believe” her dad mailed her bicycle to her at college, then assembled it during a visit. The “extremely large” bike box was difficult and embarrassing to pick up at the mail room. The two wheeler was used one or two times during the school year. This isn’t limited to dad’s and daughters. Parents often presume their young adult children want to save money, invest wisely, prepare healthy meals, bicycle, etc., etc. Maybe I should start a movement where parents let their young adult children know they’re interested in sharing different “lessons learned” if and when they’re interested. And then we’ll sit back and wait for our young adult children to ask us for help.
5) I’m filing this under “Sometimes I Amaze Myself”. I’ve done it again, I’ve come up with a brilliant idea. This one will enable me to extend my triathlon career for many more years. Based upon my swimming, cycling, and running training log, I have a very good feel for how fast I can swim 1500 or 1900 meters, how fast I can ride 40k or 56 miles, and how fast I can run 10k or 13.1 miles. That means all I have to do is guess how bad my transitions would likely be, and presto, I can spend a few minutes on-line on Mondays to see what place I would’ve finished had I actually shown up at that weekend’s races. This way I save tons of coin and race every weekend without swimming through seaweed or increasing my exposure to the sun. I “won” my age group at a few recent races.
When flying, I’m often impressed by the percentage of people reading. Mid-flight, on the return from FL, I walked up and down the center aisle. Interesting to survey people’s reading formats of choice. Like fish that don’t notice the water (Margaret Mead), it’s easy to forget we’re living in the midst of an Information Revolution that will alter nearly every aspect of our lives.
Among the readers, old school hard copy books held a slight advantage over Kindle and Nook-based electronic books. I only saw one other iPadder.
The transformation to reading electronic books will probably take a decade. Sometime relatively soon I’ll tell young people, “When I used to fly, the airlines provided every passenger warm meals on trays.” And “Before and after those meals, we read hard copy books, some that weighed a couple of pounds each.”
I’m a periodical junkie, so to this point, I’ve been using the Pad to read newspapers, magazines, and blogs. Yesterday, I purchased and began reading my first electronic book, The Joy of Less, A Minimalist Living Guide: How to Declutter, Organize, and Simplify Your Life, by Francine Jay.
Today, while reading The Joy of Less through the Kindle app, I came upon an underlined sentence which I of course tapped. Up popped this message, “Five readers highlighted this passage.” Had you been in the Toyota dealership at the time, you would have seen a look on my face that was equal parts shock and horror.
Stunned and creeped out by biblio big brother.
I could not care less about the passages other readers highlighted. A cardiac arrest was averted by the remainder of the message which said I could adjust the settings so that I couldn’t see others’ recommended highlights and also so that my own annotations would not be factored into the recommendations.
Done and done.
I suppose I should go along to get along with respect to the increasing popularity of social networking technologies, but for me, reading is intensely personal. My choice of material, my pace, my interpretations and internal dialogue. Don’t tell, but I sometimes get irked when the galpal reads outloud from the paper.
Are there really readers who want help figuring out what parts of a book are most noteworthy? Or is this feature a technological point of diminishing returns? Just because we have the technology to do something doesn’t mean it adds value. But again, since readers are free to decide whether to opt in, (awful cliche alert) it’s all good.
A lot has been written lately about the impact of electronic readers and the changing nature of book publishing. Traditional book publishers are understandably nervous. The digitization of music provides some clues as to what is likely to happen, like ever shrinking profit margins and the option of purchasing portions of books, but it’s still challenging to accurately extrapolate and identify clear winners and losers.
I’m optimistic that distinctive, clear, creative, insightful, engaging writing will still be rewarded with large, appreciative audiences.
Pressing Pause 