Tag Archives: family

Little League Legend

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Sometime in the middle of my recent California cycling adventure, I wondered, what are we even doing, turning the pedals, for hours, every day?

The only thing I could come up with was extending our childhoods. We were men and women consciously choosing to be boys and girls of old.

Then, my peabrain shifted to my earliest memories of cycling in Louisville, KY in the late 1960s. When first learning to ride a bike, I remember someone, guessing an older sib, holding the seat and running alongside me until they weren’t. And then I remember swerving bigly, a few times right into metal mailboxes that dotted the edge of the road. Like Louisville’s own Cassius Clay, down goes Ron! Eventually, I swerved less and less.

My earliest, most vivid, fullblown cycling memory, was a year or two later, when I was dominating the kickball field at Zachary Taylor Elementary. It was this exact time of year, April, and Little League baseball tryouts were right around the corner.

Six or seven years old, my pals and I knew we needed a few hours of spring training before tryouts, so we laced our gloves onto some Louisville sluggers and laid them across our handlebars which we balanced precariously with balls bulging from our pockets. And then headed to a very nice, very large park, about a mile or two from our dented mailboxes.

Once we got to the park, we noticed the tennis courts sat under about 10 inches of water that had, until recently, been snow and ice covered. Maybe, we thought, as we took off our shoes and socks, we should splash around the courts a bit before officially starting spring training.

Within a few minutes, I sliced the bottom of my foot by stepping on a metal twist off beer top. The water turned red and I grew faint-headed. Someone hurriedly called my mom who lit into me. Since I’m the youngest of four, she was DONE with emergency rooms. On the way to get ten stiches, she got all up in my grill and said, “IF YOU EVER TAKE YOUR SHOES AND SOCKS OFF AND CUT YOUR FOOT AGAIN, DON’T CALL ME!” Which is pretty damn funny now, given how kind and caring she normally was. Everyone has a breaking point.

I think this was a Thursday and tryouts were all day Saturday. Even though Spring Training was cancelled on account of blood, I rallied, and showed up at tryouts on crutches. Shagging fly balls like a young Ken Griffey and even chucking the crutches and hobbling into the batters box to take some ferocious cuts like a young Andy Pages. A legend in both Louisville Little League history and my own mind.

Needless to say, the coaches were impressed with my pluck. I vaguely remember a bidding war breaking out. I told the coach that finally landed me that I didn’t want a bag, but if he could do something nice for my mom, like maybe comp her snow cones for the season, I’d greatly appreciate it.

The legend, with a scar on the bottom of his foot, fourth from the left.

Hotel California

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Friday morning, I woke up in Washington State’s capital, per usual. Then I leapfrogged from Tumwater Costco to Medford Costco to California’s state capital and M and C Griffins Sacto crib*, hemorrhaging large swaths of my lifetime savings at the pump as I migrated south.

I was asked to deliver a message. Which I did.

Gav,

Eat the rich.

Bobby

Saturday’s tuneup ride was a flat, fun affair alongside the Sacto and American rivers. Well, except for trying to stay on MGriffins wheel when he got frustrated by my pedestrian pacing.

Today’s drive begins shortly. Destination San Diego where a week-long circumnavigation of the County awaits. 16 other crazies. Different California Hotel every night. Mark scaring me a bit by saying the group is “interesting” then just smiling evilly as if words don’t do them justice.

Your humble blogger will do his best to match their crazy. It will be fun to meet new people, ride new roads, and to dry out under blazing, cloudless sunshine. If only I wasn’t so undertrained. Don’t tell the crazies I’m a lil’ nervous.

Raise your hand if you’d like me to blog San Diego County bike week. Okay, thank you, you can put your hands down.

Raise your hand if you’re a numbers person and will (somehow) be content to just follow me on Strava. Okay, thank you, you can put your hands down.

Raise your hand if you’re of the same mind as my sissy who often reminds me, “Ron it’s not all about you.” Meaning, not only do you not want to know anything about how next week unfolds on the roads of San Diego County, but you’re deeply regretting even reading this intro.

The “please, please, please blog SDC cycling tour” contingent carries the day. Congratulations to them and everyone whose lives are about to be changed by my reporting.

Remember, when it comes to the humble blog, “You can check out any time you like, but you can never leave.”

*If you ever get the chance to stay at Chez Griffin, take it. Bespoke hospitality marked by amazing food and conversation.

Postscript. If UCLA wins today, I’ll pick up the Crazies dinner tab. Oh wait, I forgot how much the drive is going to cost. Nevermind.

JJ For The Win

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JJ and I were having another meaningful convo in the kitchen recently, which has become Deep Convo Central since our lives have been turned upside down. We weren’t thinking the same about whatever it was we were batting back and forth. Finally, a little exasperated with your humble blogger, she said, “Dad, I can hold two opposing ideas in my head at the same time.” Touché.

That’s what my mind returned to when she texted me this picture yesterday. To explain more fully, a few days ago, I got her monthly newsletter which lately has been mostly, but not exclusively, a beautiful, heart-wrenching reflection on her grieving process.*

Dig this flavor flav:

“The last two years were marked by such a different version of the mom I had had for the first 28 years of my life. She was so sick, she was so burdened by her illness and her symptoms. That has been the version of her most readily accessible in my memory. That has been the version showing up in my dreams, night after night, adding salt to the wound. If I can only see her in my dreams, can’t they at least be happy? Can’t she be healthy? Can’t I have the mom from that green couch? I believe one day they will be happy. One day she will be healthy again and she will visit me at night and whisper in my ear that she loves me, whisper that she misses me, that she’s still with me, if in a different form than before.

I still don’t feel normal, I still feel all sorts of wrong, I don’t recognize many aspects of life right now, I have a limited capacity, I don’t ask as many questions, I don’t beep bop around town. So it goes I suppose. I have such a greater understanding for the people in my life who have lost a parent and the hard work they did and continue to do to survive it. This is truly such hard work. And also, when I look, I see a slowly but surely improving ability to do more things in the day, a desire to socialize a little bit more, and flickers of a self that I recognize. When I am in the space to see them, there are some beautiful corners of grief – richer friendships, increased empathy, and a deeper understanding of the things that are important to me.”

All sorts of wrong coupled with a warm smile. Two opposing feels. At the same time.

*I told her she should be writing books, not selling them.

The Winter Of Grief II

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

I’m 63 years 10 months old.

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

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

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

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

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

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

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

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

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

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

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

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

It’s Happened

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

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

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

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

It’s how we communicate.

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

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

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

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

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

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

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

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

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

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

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

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

Downdate

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A word I just made up. An “update” includes positive and negative developments. A “downdate” is a decidedly negative update. Here goes.

Lynn’s symptoms are growing in number and worsening. And she’s darn near non-communicative.

Since the MSA diagnosis, she’s been like a jack spinning so fast on a hard tabletop that you wonder when, oh when, will it stop.

I want to ride my trike. I want to go to the Y. I want to dodge the garbage cans and go from the back yard to the front in my wheelchair. I want to stand up on my own. I want to do it myself. I want to be normal. I want to live. And now that I’ve stopped caretaking, and can exhale, I wonder, who can blame her for her fighting spirit?

Now, though, the jack slows and wobbles. No more trike. No more trips to the Y. Alison said last night she held tight to a few garden tools, but no real gardening took place. It’s like this disease broke into our house, took every single thing in it, and then, not content, broke out a sledge hammer to destroy the walls. Now, I’m afraid, it’s going to torch the exposed wood framing. It’s relentless.

Since Lynn’s move to an adult family home five weeks ago, Alison and Jeanette have been amazing. Investing tons of time and energy. Ready to catch her as the wobbling worsens.

Lots of people continue to be amazing. Ebony, for example, is a hospice volunteer who comes twice a week to help Lynn shower. The last time she didn’t know I had slipped into the bedroom that is connected to the bathroom where she was helping Lynn. Ebony was so ebullient. She kept asking Lynn if the temperature was okay and continued talking to her like she was her own mother. She was having a genuinely good time aiding Lynn, and by extension, our family. Such humanity.

And Lynn’s friends. And their flowers. And cards. And visits. As a group, they are wonderfully unbothered by her decline. Like Alison, Jeanette, and me, they need her smile and probably wonder what they’re going to do without it.

A significant change is that Lynn is coming to grips with the fact that nature is running its course. And that her time is short. Her quality of life is such that she’s more okay with that now. One can only endure so much.

As for me, I’m living a double life. Monday, I had an amazing swim in a beautiful local lake. Tuesday, five friends and I were bearing down on Tenino when a herd of 50+ cows and calves, all the exact same white color, moved in unison towards the road to seemingly spur us on. That was surreal, and when combined with our idyllic weather, and the trees starting to show out, it’s tough not being able to enjoy my favorite time of the year with my favorite person.

When I get home from the lake and the group ride, the kitchen is empty. There’s no one to ask, “How was your swim? How was your ride?” So my autumnal joy is tempered by a void. My love of fall is no match for this loss of intimacy. Unlike Lynn though, I will be okay. In time.

On Dying

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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.

The Ultimate Litmus Test

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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.

Paragraph to Ponder

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Susan Rothchild in The New York Times:

“My son, Chauncey, died a few years ago of a fentanyl overdose. He was a brilliant, eccentric autodidact, an excellent farmer and chef, but he chose to work as a carpenter and plumber. He was not good at either job. Yet, when he offered to build my new bathroom, I said yes. Now every time I take a shower and see the dribbles of grout on the wall, stand on the still-unattached drain plate or get drenched using the hand nozzle with a mind of its own, I think of him. I will never get them fixed.”

Two Worlds

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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.