A Gnat's Quest(ions)

Ever since I learned the art of clowning, today has served as an important celebration for me—April Fool’s Day, a day long steeped in tradition, folderol, merriment and upending the status quo. What’s not to like about this? We can all use a little levity.

And for me, where I am now in this journey through life, levity is especially welcome. Why then this mix of sadness? 

Well, there is the obvious, I suppose.

“Surgery is not an option for you,” the region’s top surgeon in pancreatic surgery told me on Christmas Eve Day. Pressed, he forecast a life expectancy of three months if I chose not to pursue chemotherapy.

After one go-‘round with chemotherapy I decided to pursue it no further. That was three months ago. By rights, perhaps I should be dead by now. Instead, I sit here at my kitchen table and watch myself make question marks of blueberries. Questions swirl in my head.

How much time do I have left? Given the current Covid-19/Coronavirus pandemic, how much time does any of us have left? Does it matter? How much? 

Says Emily Dickinson,

A Toad can die of Light

Death is the Common Right

of Toads and Men—

of Earl and Midge

The privilege—Why swagger then? 

The Gnat's supremacy's the same as Thine.

In the big picture, it matters a hill of beans; makes as much difference for landed gentry as it does to the gnat.

Hoppy Saint Urho's Day with an Added Kick

St. Urho statue, Menahga, Minnesota

This the statue of Saint Urho before which Bryn and Dave prostrate themselves three times whenever they pass through Menahga, Minnesota en route to the Rufus & Maggie Marlow Family Reunion

HAPPY SAINT URHO’S DAY!

Lest we be remiss and skip the opportunity to celebrate the holiday with you, happy Saint Urho’s! Bryn’s grandfather (coincidentally named Urho) died today in 1963. Bryn had wondered if he, too, would die today. So far so good.Hope your day was hoppy.

24, AND COUNTING . . .

March 12 marked our 24th anniversary, Dave’s and mine. Not 24 years since we married, as that option was long unavailable to us, but 24 years as a couple. And 15 years to the day we married in Windsor, Canada.

These years have been rich and full of experiences and growing in love. We are grateful and blessed.

Adding my own twist to local history

EVERYDAY LIFE IN MIDDLETOWN

For a few years now Dave and Bryn have participated in a volunteer diary effort titled “Everyday Life In Middletown,” a Ball State University project documenting the experiences of area residents. This has proved a rewarding experiment in paying attention. Thinking about what to do with collected diaries from the period of his coming out, Bryn contacted University Archives and the Everyday Life in Middletown Project to see if they have interest in receiving these.  (Yes.) The recorded information has been too emotionally trying for Bryn to go back and put it in memoir format. Perhaps elements of it will see the light of day through this project. A number of people are involved in helping move the information from written files to searchable digitized files, and in organizing various related documents. In the future researchers may request access to this one man’s take on the coming out process in middle America.

[  KNOCK  KNOCK  ]

This past Saturday brought a surprise phone call from Bryn’s brother Steve, long estranged from him over Bryn’s having come out gay. Steve suggested a get-together that evening with him and his adult daughter Alyssa. We four shared a meal. At Alyssa’s request the brothers spent some private time talking together. Civil discourse. Polite. Some heartfelt exchange. Steve came close to making what might pass as an apology—”I want you to know I’ve always acted on what I thought to be right. Maybe I erred on the side of being too harsh.” Bryn, on the other hand, did not float the word ‘apology.’ 

The next day friends Kelly, Tish, and Sister Joetta, dropped by for a visit. Bryn said the day was tinged with gold for him:  his energy was up. the day was gorgeous. It was good to share time with friends and to feel that warmth in the household.

Dave and son Jeremy are working on building Bryn’s casket. Late into the project, Dave neglected to read the fine print that making it out of hardwood (red oak wood rather than lightweight pine) adds about 200 pounds to the weight of the finished product. (“Good thing I'm losing weight hand over fist,” Bryn says, “so that the final weight will be doable by my virtual pallbearers.” [Since we're planning on cremation, Bryn’s pallbearers will not have to shoulder any actual physical weight.]

 Recently Bryn’s pain has been managed well to the point he is able to be present to people and to what’s going on around him. He looks rail thin. His skin is yellowed with jaundice. Energy levels come and go, varying with the day. So, too, nausea and vomiting. 

VOMIT WITH AN ATTITUDE

Oh, there have been harrowing moments. Dave flying from one country stop sign to the next. Both of us hoping beyond hope that we'll make it home before it comes out one end or the other. This in the days before having emesis bags at the ready. This time (and another) when we made it home beforehand, if just barely. Last night it was vomit with an attitude, a very polite attitude that waited until we got home—after a modern dance theater presentation, no less—and having gone out with friends to a restaurant afterwards. This time the vomit came up patiently, having waited its time.

VOLUNTEERS WITH GRACE

Last week our visiting hospice nurse was Janice, a long-time former colleague of Dave’s when he served as hospice chaplain. Trading on their long-term friendship, Janice read Dave the riot act regarding his marshaling volunteers to help cook, clean and do other tasks so as to free him up for quality relationship time with Bryn. 

Dave took her words to heart. We now have a cadre of volunteers who have signed on, signed up and showed up to do household chores. We're so grateful to feel this extra-special level of support from family and friends.

HOW NOT TO DO IT

 This is a link to a video of a presentation Bryn made at a Ball State class. It was titled, "How Not to Come Out Gay in Delaware County".

NOT DEAD YET

      In phone conversation the other day, someone (here to remain nameless) in effect said to Bryn, “So, you're not dead yet.” No, to quote Mark Twain, rumors of my demise have been greatly exaggerated. Bryn is not dead yet. Still hanging in there. Happy for good days. Happy for good energies. Happy for you. Happy for what it means to be in touch with you and walking through these days together. 

Yosef, Bryn, Dave, Dave

HEARTS ON PARADE

One of the gifts of extended life review is the opportunity for people to visit—sometimes in person, sometimes through cards, email notes, letters, greeting cards. Friends from 25 years ago who were instrumental in helping me navigate the new and icy waters of coming out. In rolls the car with Pennsylvania plates and two men near and dear to our hearts. These and others, heart friends who, fast bound chord-to-chord, provided a trail marker, a clothesline in the dark, a snow fence to follow through the blizzard to find my way home. Yet others, friends of whom I have second doubts. (What are you doing here? We've not connected for years. Why now? What's in this for you? What's in this for me?) 

 Come one, come all, as long as I have energy. I keep learning what’s important here at the end of life is connection, reviewing the depth, breadth, nurturance, attitudes, feelings in all this. A visit with an estranged brother: curious and welcome all the same. Such a mix of feelings. Such gratitude underlying it all. Love.

Love,

Dave and Bryn

Been a Big Coupla Wheeks

Been a big couple of weeks here at Old Winters. Bryn’s sister Elayne and husband Jim spent a week with us, helped out as needed. They smoothed our path and shouldered responsibilities so we each could pursue individual goals, offered listening ears, understanding hearts.

 

sister Elayne, niece Rachel, nephew Gabe, Dave. Bryn, nice Cammie

Dave’s former wife Naomi, kids Jeremy, Jennifer, Martha & Brian, and grandkids Noah, Brennan, Charlie, Anna, Autumn (ages 12-6) spent Saturday, 15 February, with us. Houseful of fun, food, folks—Elayne’s & Jim’s youngest Gabe and wife Cammie visited, as well. 

Bryn was alert and aware, thankful for being present to the activities and individuals involved. He saw a personal wish fulfilled in his clown character Mumblecrust making a brief appearance, presentation and program for the gathering. For 40 years, the clown as served Bryn as teacher, mentor, instructor and guide. Especially poignant for him was the moment when Mumblecrust waved goodbye.

Mumblecrust

Life-long (if life begins at 20) friend Serge flew in from Toulouse, France on Thursday night to spend the weekend. Serge was the first person with whom Bryn ever fell in love; the two have remained warm friends ever since. In recent years he, Dave and Bryn have vacationed together. Dave and Bryn used Serge’s and husband Bladimir’s home as a honeymoon destination. This weekend we reminisced, reconnected and relived significant moments. Saying goodbye epitomized sweet sweet sorrow.

Bryn, Serge

 

 

 

 

 

Serge, Bryn, Dave

 

 

These last few weeks nausea and vomiting have been familiar visitors who arrive unannounced and don’t always stay long before ducking out, only to reappear in eight to ten hours later. But there’s no predicting their pattern. Bryn and his eldest sister Elayne reminisced and visited as energy levels allowed. At one point Bryn was seated opposite Elayne when nausea Adams calling. He grabbed the porcelain pail just in time. In a flash, Elayne was sitting beside him, cradling his forehead, patting his lower-middle back, crooning, “Let it come, it will be alright.”

This brought Bryn to tears. (This, or maybe the bitter acid taste in his mouth, or the fact that his sister had run toward him rather than away when he was at his weakest, most vulnerable, least prettiest.) “Elayne, you are the embodiment of our father’s love,” Bryn told her. “You and I both have strong memories of our dad taking care of us in such a way at such times. Thank you.”

 

Iso Papa and three of the grandkids, photo included in a Valentine's Day card from the kids

 

Each of the grandkids put together special Valentine’s Day greetings for their Iso-Papa, as they call Bryn . . . Among the memories they highlight: playtimes together, laughter, energy, games, caring for chickens and geese, woodland hikes, reading books. Photos were included, as well.

The weekend spent saying hello/goodbye to Serge gave me a lens through which to view my passing in and out of life. Three days with my first love, a lifelong friend. Three days to say thank you, to say I love you, I let you go. Three days and no say, really, over whether I would be present to the moment or racked with pain.

I wondered how I would handle this final farewell, saw it as a rehearsal for letting go all whom I love. My tendency: freight such moments with more gravity than they already carry. All my life I’ve tried to pile on too much. ’Had energy for accompanying Serge and Dave to the airport in Indianapolis, but not enough left over for an effusive display of grief and farewell at the gate where we parted. ‘Let Serge’s tears speak for him and me. Waved until he was out of sight.

For now, daybeds

A hospital bed now graces our living room. I’ll use it as a day bed/daytime headquarters, can still sleep in the bedroom next to Dave. He plans to sleep on the couch when I move to the hospital bed full time. Jaundice is showing in the yellow cast to my skin. Maybe because the bile duct is getting obstructed by the tumor. Made it to Ball State university theatre two times(!) last week—here’s a snapshot of Tish, Kelly, Serge, Dave and Bryn afterward.

 

Tish, Serge, Kelly, Dave, Bryn

 

Sobering News

Dear ones,

We’re feeling our way into the mixed blessing of modern technology. Assuming you have expressed an interest in getting this information, thank you. Your thoughts, prayers and warm well wishes are both welcome and felt. Bryn says he sometimes can sense an unseen safety net around him, buoying him up. We like to think that’s the web of connection making itself known. 

No promises as to how often we’ll post these updates: life is in flux and things are a whirl at the moment—we’re slow getting this first installment posted. That said, know that we appreciate your loving support.

Sincerely,

Dave and Bryn

Bryn

+ + +

At a glance:

October 2019.   Bryn feels unwell, can’t see any reason why. Throughout the month and the next one he sees the doctor several times and test after test comes back “all clear.” Except that is is not all clear and the pain continues. It started with the sensation of a knife stabbing into the base of the rib cage and being drug laterally across. Next the pain focuses on lower back, then middle-lower back, then gut, then lower back again. It ricochets  off off these three points, sometimes lighting up two or three areas at the same time. Since his doctor is finding nothing, Bryn seeks chiropractic treatments, hoping this will help. The pain continues to ramp up, as do the medical bills for (some expensive) tests that all say nothing is wrong. 

Over a given weekend the pain is especially severe. The doctor has no openings that Monday, so Bryn agrees to drive 45 minutes to a satellite office where he can see a nurse practitioner. She encourages him to get an ultrasound of the chest area. He refuses to throw more money down the rathole of tests that keep coming back clear. She bargains with him, “If I can find you a CT scan for under $400, will you have it done?” He agrees and she’s as good as her word. It’s a low-cost, low-res scan that will ultimately have to be repeated at high-res (and higher cost), but this is the test that comes back showing a suspicious growth on the pancreas. Thank heavens for nurse practitioners who listen to and are willing to work with their patients.

A high-res CT scan indicates the need for an endoscopic biopsy of the pancreatic tumor, Bryn’s first-ever surgery. He makes it through fine. That night the pain ramps out of control. “Take him to the emergency room,” Dave is told. Bryn refuses to go. He wants medicine for the pain, not a huge bill for a visit to the ER. Nothing doing. The surgeon’s fear is something may have gone dreadfully wrong and Bryn may die. Bryn counters that as pancreatic cancer carries a very similar prognosis it won’t make that much of a difference. He just wants something for the pain. Ain’t gonna happen.

Bryn survives the night. Dave calls Bryn’s regular doctor the next day. No, they won’t give out anything for pain since they didn’t do the surgery. Call the surgeon. Nope, surgeon insists Bryn go to ER. He’s just a once-and-done surgeon; pain management is the responsibility of the regular doctor. We call the regular doctor back. No, he didn’t make the referral to the surgeon. Contact the nurse practitioner. Meanwhile, the pain continues. Back to the surgeon who says, “Go to ER for a CT scan.” Sheesh.

In the end Bryn asks the surgeon to order the durn CT scan so as to avoid the ER charges. Bryn has the CT scan which shows the surgery went fine; he’s just in need of something for the pain. Even now the surgeon refuses. Pain management is not his responsibility.

Bryn can count on being up three or more hours each night with pain. Bed to couch, back to bed, back to couch, then soaking in a scalding hot bath, sleeping with a heating pad, making it through one moment to the next. Tylenol and Exederin within reason, pain a constant companion.

Ability to work is compromised. He misses more hours than he makes it in for. On Christmas Eve he meets with the top pancreatic surgeon in Indianapolis who delivers the news: it is inoperable pancreatic cancer. Chemo is suggested.

Bryn meets with an oncologist. She promises pain relief. And comes through for Bryn on the weekend the kids and grandkids and grandparents get together to celebrate Christmas. Bryn has a couple of days where he is able to be present to something and someone other than the pain. By Christmas Day the pain ramp way up again. Days continue like this...unremitting pain. A flurry of medical appointments. Surgery to have a port put in so Bryn can get started on chemotherapy. And still pain.

Then chemo. Not only pain, but nausea, diarrhea and other side effects as well. 

Bryn and Dave have some long talks about quality of life, the disease prognosis, goals for the time remaining. Bryn leans toward stopping chemo, asking for a focus on pain management, clarity enough to write a funeral oration, have some moments of being present to the grandkids, be able to put some of his affairs in order. He meets with the palliative care doctor, makes a cogent case for why he’s considering bowing out of chemo.

Says the doctor, “I don’t usually counsel any of my patients to stop chemo, but I’ve never met anyone quite like you.” The doc says he’s reviewed the chart, seen that no one’s promising chemo as a cure, says getting an additional month of life would be considered a good outcome. 

Bryn says he doesn’t care for an additional month if he’s going to be feeling as good as he has been. “This is not the quality of life that’s going to help me achieve my goals.” The doctor ups the dosage of pain medicine.

After further consideration, Bryn stops chemo after having had one round of it, signs on for hospice care. Has higher energy—four good days in a row, feels better in those four days than he has for three months. Makes progress on his funeral oration, other goals. Can finally summon energy for writing a little, talking on the phone, visiting in person.

Learns the hard way that energy is going to fluctuate. A hard day may follow a good one or not. No rhyme or reason. As word gets out, people email, telephone and schedule visits.

We schedule a photo shoot with a photographer who makes house calls. Have a lot of fun having our pictures taken.

Bryn and Dave caught in a snow globe

Bryn contacts Ball State University officials about their interest in accepting donation of his diaries and papers—a personal record of one man coming out gay at a unique time in the nation’s history. Yes, they’re interested in expanding the diversity of their holdings. And would you be interested in making a class presentation, review the story of your life? “Why, yes I would.” That presentation was on Wednesday of this week. It went well and Bryn enjoyed and appreciated the opportunity to share his story in this forum. As he was speaking one woman leaned over to Dave and whispered, “It looks like he’s in his element.” She was spot on. 

If we get a promised link to the video we’ll send it your way. Meanwhile, attached are a couple of proofs from the photo shoot. 

All this comes to you with gratitude for your support and caring and staying in touch. There is something to this unseen web, the cords of love that bind heart to heart to heart. I’m glad to be in it with you.

Thank you,

Bryn

Dear Boone Grove High School Librarian,

Dear Boone Grove High School librarian,

I feel rather sheepish coming to you this late in my life with an overdue book. OK, not overdue, stolen. A book I stole from the library 47 years ago when I was in eighth grade. My husband and I are cleaning house, setting my affairs in order. Today we started going through my books—I have a ton of them—and the race is on. Doctors tell me I have maybe two months left to live with pancreatic cancer.

One of the books I pulled from the shelf today was Wolf Brother by Jim Kjelgaard. I smiled when I found it, set it aside. I want to return it to you with my apologies.
Kjelgaard’s novel spoke to me back when I was a gay boy who did not then know he was gay. A goody two shoes, good church boy who worked in the library’s AV section, helping set up audio visual equipment for various classrooms. A bookish lad, shy, withdrawn, introverted, teased. Teased for what? For being gay, awkward, naive, stupid, foolish. For being a prick, a prig. A boy who identified with the main character in Wolf Brother.

It’s the story of an Apache youth who returns to his people after years in a white man’s boarding school. He gets caught up with a band of his people who refuse to remain confined to the reservation, choose to pursue freedom against overwhelming odds. The Apache are branded as cutthroat savages, hunted mercilessly. The boy earns the name Wolf Brother when he befriends a lonesome wolf cub and vice versa. This unlikely pair play an important role in the novel, come to each other’s rescue, are able to escape, eventually help carry hope back to the tribe. Wolf Brother serves as an example of how to make it through.

What spoke to me in this tale? Perhaps it was echoes of a boy who is on the outside, whose world is falling apart, who must find his way through tribulation and trial, anger and prejudice, make a way for himself and a life for those he loves.

Throughout my life is not Wolf who has been my totem, my spirit animal guide, but Bear. Bear came to me in a recurring dream throughout childhood. Time and time again he chased me around and around and around the garage at our house on Highway Two. It was always the same dream: me, running pell mell in terror, the bear hot on my heels. I would wake up sweating, panting, scared.

The dream came back to me after I'd come out as a gay man in mid life. Had left a wife and three small children, was living by myself in a ratty apartment in a building soon to be condemned by the city. Sleep was hard in those days. Eating was hard. Putting a life together was hard. Then Bear showed up to terrorize my night dreams.

I was angry, but had the wherewithal to say, I cannot go on like this. I will not. The next time this dream happens, I'm going to turn and face the bear. The dream came again with Bear chasing me around my parent's garage. As I ran through the pine trees I could feel its hot breath on my neck, slap of pine tree needles in my face.

I turned to face the bear, plunged my hands deep into its fur, yanked its face up towards mine. (My skin still gets goose pimples when I think of this.) I looked that animal straight in the eyes. It was me I was looking at. I was the bear. I was running from myself.

I realized I had always been running from myself.

I swore then to walk alongside Bear, rely on his power, strength, courage, wisdom. He has reappeared to me since. Never again in the dream chasing me. But whether in waking life or in the liminal world of sleep, I pay attention when Bear shows up.
After coming out I met and married a man whose animal totem Wolf is different than mine. Yet he understood and embraced the concept of an animal spirit guide. We share many similarities. Dave grew up on a farm in rural northwest Ohio; I grew up on a hobby farm in rural northwest Indiana. We share core values: simplicity, integrity, compassion. Value the unseen as much as the seen. Live without TV, cell phone and until recently internet connection. He's retired now after a long stint as chaplain with hospice. (I signed up for hospice yesterday.)

In partnership with this Wolf Brother of mine, I learned to live outside the rules of society. We made our way as two gay men in rural Indiana against blatant opposition from the legal system, religious system, society at large. In 24 years together our lives, our love has served as an example for others. They’ve told us so. I am grateful.

Grateful, too, for a story that spoke to me those many years ago. Grateful for the way I embraced the story, lived it, made it my own. My thanks to you for the lifetime loan of this book are long overdue.

Sincerely,
Bryn Marlow, Class of ’77
Boone Grove School
Home of the Wolves