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.
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.
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.
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. :)
Baby (whoo-hoo), where the hell is my husband? (Whoo-hoo) What is taking him so long (whoo-hoo) to find me? Oh, baby, where the hell is my lover? Getting down with another? (Whoo-hoo, yeah) Tell him if you see him, baby, if you see him, tell him, tell him (He should holler)
Why is this beautiful man waiting for me to get old? Why he already testing my patience? I only fear he’s taking time with other women that ain’t me While I’ve been reviewing applications Wait ’til I get my hands on him, I’ma tell him off too For how long he kept mе waiting, anticipating Praying to the Lord to give him to my loving arms And despite my frustrations
And he must need me (he must need me) Completely (completely) How my heart yearns for him Is he far away? (Is he far away?) Is he okay? (Is he okay?) This man is testing me, uh-huh, uh-huh Uh, help me, help me, help me, Lord I need you to tell me
Baby (whoo-hoo), where the hell is my husband? (Whoo-hoo) What is taking him so long (whoo-hoo) to find me? Oh, baby, where the hell is my lover? Getting down with another? (Whoo-hoo, yeah) Tell him if you see him, baby, if you see him, tell him, tell him (He should holler)
I’m doing lonely acrobatics, unzipping my dress at 2 a.m. And I’m tired of living like this He must be out there getting ready, tryna fix up his tie Uh, huh-huh, uh, hello? This where your wife is Wait ’til I get your heart going, I’ma turn it up too For how much I’m ’bout to love ya, no one above ya Praying to the Lord to hurry, hurry you along Baby, I intend to rush ya
And he must need me (he must need me) Completely (completely) How my heart yearns for him Is he far away? (Is he far away?) Is he okay? (Is he okay?) This man is testing me, uh-huh, uh-huh Uh, help me, help me, help me, Lord I need you to tell me
Baby (whoo-hoo), where the hell is my husband? (Whoo-hoo) What is taking him so long (whoo-hoo) to find me? Oh, baby, where the hell is my lover? Getting down with another? (Whoo-hoo, yeah) Tell him if you see him, baby, if you see him, tell him, tell him (He should holler)
T-t-t-t-tell him I’m mm, tell him I’m mm with the mm, mm, mm Tell him I’m kind, tell him I’m 5’5″ Tell him I got brown eyes and a growing fear That if he doesn’t find me now, I’m gonna die alone, so can he Uh, uh, uh, uh, uh, hurry up here, sir? Uh, uh, uh, uh, uh, uh-huh, uh-huh, uh-huh, huh I want it, want it, want it, want it, want it
I would like a ring, I would like a ring I would like a diamond ring on my wedding finger I would like a big and shiny diamond That I could wave around and talk and talk about it And when the day is here, forgive me, God, that I could ever doubt it Until death, I do, I do, I do, I- Is he about it, ’bout it, ’bout it? This man is testing me, uh-huh, uh-huh Uh, help me, help me, help me, Lord I need you to tell me
Baby (whoo-hoo), where the hell is my husband? (Whoo-hoo) What is taking him so long (whoo-hoo) to find me? Oh, baby, where the hell is my lover? Getting down with another? (Whoo-hoo, yeah) Tell him that my grandma said it, tell him grandma said it (Your husband is coming)
I would like a ring, I would like a ring I would like a diamond ring on my wedding finger I would like a big and shiny (ooh) diamond (yes), diamond (yes) Diamond (yes), diamond (yes), diamond (yes), oh Where is my husband? (Ah)
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.
After my last musing, SW, a close friend, texted me, “Please be more specific. I’m curious just how crazy you are.” Which made me smile.
The return text, “Where to begin?”
But then, I pressed pause. And thought about self compassion. And how I need to muster more of it given this most challenging chapter of my life.
And so I started to think about both sides of the ledger, the “irrational” and “rational”. The irrational mostly consists of what most objective observers would conclude is poor time/money decision-making. Meaning, I regularly do things that I could pay others to do for far less money than my increasingly limited time is worth.
But sometimes I just like popping the AirPods in, cranking up the Biebs, and washing my car in the driveway. Or washing the windows. Or cleaning the house. Which brings a documentary to mind about Japanese elementary schooling. When asked why young Japanese students clean their school at the end of each day, one Headmaster said, “Cleaning creates a calm and gentle spirit.” Love that. Sometimes there are less obvious, less tangible benefits to laboring yourself.
Without detailing the “rational” side of the ledger, suffice to say, there would be many more entries. In retrospect, I think I’ve done an extremely good job picking my parents, picking my in-laws, earning, saving, and investing. The first two highlight the role LUCK has played in my life. I wasn’t anywhere near perfect with respect to the other three, but I have made disproportionately more thoughtful decisions than thoughtless ones.
In my early twenties, when I was gifted some money from my parents for the first time, I had this deep-seated impulse to make the most of it. As an educator, I knew I’d never make bank. As a result, I educated myself about investing, and as our assets grew, we assiduously avoided lifestyle creep.
So much so, that family and friends get infinite amusement from teasing me about being too frugal for my own good. Yeah, I admit, often I am, but we still have lived posh lives, even by Western, late 21st century standards. And what my “friends” always fail to mention is that I’ve done a very good job growing our assets and taking the long view.
Which means now, we can pay for 24 hour care for The Good Wife without losing sleep. Which is a real blessing and one of the clearest indicators that my rational side has more than compensated for my irrational quirks.
For SW, here’s a lil’, lil’, on the quirk front. Yesterday, I traded in the Elonmobile for a new rig. I concede, I have a car prob, specifically, churning through them. The new rig comes in eight colors. I ended up with only my fifth or sixth fave color because it was the best deal I could find in Western Washington. By about $3k. I consciously told myself, configure the rig in whatever way will increase the odds of keeping it longer than my sad (sick) average. So I got the top trim, points for that. But deduct the same points for settling for a bottom-half color.
Also, SW, I spent way too many hours watching reviews, thinking about alternatives, and alternatives to alternatives, and then ultimately, interacting with dealerships.
Now, my “friends” are ripping me for being an ICE ICE Baby again. Mr. Fossil Fuel. A retrograde. To my many critics, take a number. Two of my fave “new car” texts today were, “He is milquetoast and has completely given up.” And “Your car matches UCLA’s performance” which was just mean.
Shifting gears, pun intended, I aspire to be more like my mom and wife, meaning way more generous. I took a baby step two weeks ago when I gave Olga a $3,000 (the money saved on the dud color?) bonus for being such an amazing help with Lynn over the last year. Because she lives check-to-check, it was like I had given her $30,000. As tough a Russian-Ukrainian woman as you’ll ever meet, at least on the surface, she broke down in tears.
So, forgive me if I cut myself some slack. Savings to soften the devastating blow of MSA. Savings to help the hijas and lighten others’ burdens. Savings to enable Olga to breath a little easier for a few months.
Just not enough savings for a bitchin’ colored rig.
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.
At the end of life, how does one know whether they’ve lived a good life or not? More personally, how will you know if you have? How will I?
Many of us live as if professional reputation, material wealth, and social status are the key ingredients, but watching The Good Wife get closer to the end provides an altogether different litmus test.
Which is this. Have you been a good enough friend, to enough people, long enough, that they’re there for you at the end? Or has a certain self-centeredness and peripatetic life left you mostly alone?
You’ll only know which of these is the case if you die slowly. Some of us will go quickly like a friend of mine who fell over dead on his bike in Italy last summer. Although he didn’t have time for the “close friend” litmus test, his memorial service provided positive clues to a life well lived.
Based on the “close friend” test, Lynn has lived an exceptional life. Unfortunately though, she’s unable to take solace in that knowledge. Because like many of us, she’s incredibly hard on herself. My unprovable hypothesis is that the built-in feeling of inadequacy began at birth with Lynn wondering, “Why didn’t my mom want me?” Almost certainly, it didn’t help when 45 years later she contacted her birth mom only to learn she still didn’t want any kind of relationship.
Consider the last 48 hours. Yesterday, Lynn participated in a zoom call with her four dear college roommates. “Participated” meaning listened intently and smiled throughout. Today, an hour before Pastor Carol was coming by with communion, Susan texted to see if she could pop in. I said she could join Lynn and Carol, Carol happens to be Susan’s pastor, and the three of them visited for over an hour. I could go on and on. Lynn’s support network has blown my mind. She is being loved and supported by so many people none of whom are the least bit phased by her worsening symptoms like her loss of voice.
Some bring art, some bring pictures, a lot bring food. In the end, they just want to be next to her. And to see her smile. When we’re without her smile there is going to be a painful void in a lot of people’s lives, not just A’s, J’s, and mine.
I intend on honoring Lynn’s eventual legacy by prioritizing friendships even more.
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.
Pressing Pause 