Cancer Truths in the USA

Michael – post-biopsy – early 2012

Right now I’m participating in a fundraising effort for some old friends of mine, who’ve been coping with a ratcheted-up metastatic cancer. In other words, after many years of going up and down with remissions and lapses, this man’s prostate cancer has taken off again, accompanied by a new bladder cancer as a further complication. They’ve had some decent years during those remissions. Hard ones too. They’ve raised kids, lost parents and siblings, aged, had financial problems and lived their lives with the good and the bad parts that are normal components of life. Meanwhile that “indolent” cancer, a favorite oncologist word, decided for inexplicable reasons, that hanging out was over and rampage time had arrived. When that happens, a tsunami of problems is unleashed, from the awareness that abnormal cells are devouring healthy tissue, to the confrontation with mortality, to fear and grief and a cloudy future. All the medical data that is alien and confusing jump on the pain train. Every day these tough issues become constant companions. If you live in the USA, your bonus terror is the money factor. For the lucky people who have seriously deep pockets and the subsequent clear field to acquiring the best treatments out there, a rotten situation becomes a bit less daunting. For the poor and uninsured, they are at the bottom of the medical Mt. Everest. And then there are the rest of us, somewhere in the middle of the morass of the staggering weight of what’s next physically, emotionally and psychologically, coupled with the business model of the medical and insurance twins which have to be navigated whether you are capable or not. I know about this. I lived it for five years. Now five years out from Michael’s death, I still remember how terribly difficult our life was, trying to stay balanced between what we knew was important, us and our family, while living in fear of insurance denials, outrageous pharmaceutical costs and whether we could avoid bankruptcy. I am not making fabricating this truth.

A study published in the American Journal of Public Health in 2019 found that 66.5% of bankruptcies in the U.S. were due to medical issues like being unable to pay high bills or due to time lost from work.3 Even with health insurance, high deductibles and copays, plus job loss, impact Americans. Rare or serious diseases or injuries can easily result in hundreds of thousands of dollars in medical bills—bills that can quickly wipe out savings and retirement accounts, college education funds, and home equity.

Michael post-surgery, 2012

The photos above were taken two months apart. The top one was taken a few days before we got the biopsy results from the tiny lesion that had shown up on Michael’s cheek, the one under that little bandaid. Discovered to be the lethal cancer Merkel cell carcinoma, Michael required a lengthy flap surgery in which his parotid salivary gland and sixty-six lymph nodes were removed. That surgical procedure was to be followed by thirty radiation treatments to the closest lymph draining basin, in his head and neck, in the hope that any rogue cancer cells would be destroyed before spreading throughout his body. Two of his lymph nodes were malignant. Michael was 62 years old at the time, ineligible for Medicare. He had an HMO through his teaching job at the time. We were lucky – Michael had enough sick time banked to cover the last few weeks of school that he missed. We were able to come up with the maximum amount of out-of-pocket medical expenses because of that sick time and by canceling our planned summer vacation.

We were staggered by it all. Michael’s parents came from long-lived families, both of them living until their late 90’s. I always thought that I’d die first, the product of one of those family medical histories that included virtually every dreaded condition or illness. We were a lucky couple, still deeply in love after forty years and keenly aware that there would never be enough time to satisfy our desire to have more time together. The statistics about survival after Merkel cell had spread into lymph nodes were grim – fewer than 10% of patients survived as long as five years. Michael’s radiation destroyed his appetite by burning his mouth and throat, making eating a challenge. His skin was badly burned. We made it through the months of treatment and Michael, albeit thin and tired, determinedly returned to teaching in the fall. Slowly he rebuilt his strength and in November, a full body scan showed no evidence of disease. We went forward, trying to push our trepidation to the backs of our minds.

From November, 2012 through November 2013, we practiced living in the moment. Michael taught while I continued caring for our grandson. He saw his cancer surgeon every three months along with his dermatologist who both checked his skin for new lesions. The treatment protocols for his cancer stage had no further whole body scans, absent a recurrence of visible disease. I was always uncomfortable with this plan. If Merkel cell that had gone metastatic was so lethal, why no scanning when melanoma patients were scanned every three months? We pushed ahead. Michael, the class sponsor for his school’s seniors, was a chaperone who donned a tuxedo for their prom. We rescheduled our canceled trip from the year before and off we went. I sent him off to our biologist son’s field station in Panama for a trip alone together, which they’d never before shared. At our June appointment with the medical team assigned to his case, I argued vigorously for a scan. The protocol issue arose but I pointed out that protocols seemed a misnomer for an incurable disease. Finally they all agreed to a scan in November, 2013, one year from the last one. Waiting for scan results is one of the most nerve wracking experiences imaginable. Michael had his on a Friday, with a follow-up appointment with his surgeon the next Tuesday. But we received a call moving the appointment to Monday. An obvious bad sign, we met with the surgeon who showed us a lit-up view of Michael’s skeleton with cancer evident in eleven bones. He was as stunned as we were, convinced this was a new cancer. But a bone marrow biopsy confirmed Merkel cell and just like that we were moved from the cancer surgeon into the care of the oncologist, who we’d met exactly once the past June. He told us that absent treatment, Michael had two to three months to live. With a powerful chemotherapy cocktail, he potentially had one year. Michael rapidly departed from his job which was truly harsh for both him and his students. We got through what we thought was our last big family Thanksgiving at our home and in the beginning of December, he began his infusions. Still ineligible for Medicare, we began the cancer insurance process. Every treatment had to be approved by our insurance company, the ultimate arbiter of decisions. We quickly went through our out-of-pocket annual allowance, only to discover that chemotherapy was a “specialty drug” which by itself had a co-pay of $4500. Within a month, we’d used a year’s worth of the maximum amount of our required contributions, only to begin anew in January. Before you can blink, you suddenly find that you’re unexpectedly spending $15,000. In addition, the disruption of daily life, spending hours in the cancer infusion suites where delays are a matter of course, necessitates spending money on extra food because you’re too exhausted to cook. If you don’t have a big wad of savings, credit cards get used adding in more monthly expenses. All we wanted to do was focus on our lives together and Michael’s health, but money and bureaucracy quickly start demanding way too much attention. At the scariest time in your life, the business end of cancer gobbles up energy while increasing overall anxiety. This is health care in the U.S., the only modern country in the world without national health care. The psychological and emotional costs to patients and their families is immeasurable. I clearly remember thinking about the hideous school fundraisers like bake sales being required for necessities while having the defense budget overflowing with cash. The health care system is a bloated bureaucracy with patient care a line item, if that.

Michael’s cancer responded to chemo. You’re allowed a few rounds of misery, hair loss, fatigue and trauma. Then a scan is ordered. If there isn’t enough diminishing of the cancer, treatment can be halted by the physician, the insurance company or both. With enough cash, some patients can opt for a different treatment facility or if all the requirements for a clinical trial are met, more life can be available as part of a grand experiment. Qualifying for a trial isn’t easy, a fact we discovered when one of Michael’s remissions ended. Our local doctor thought he was eligible, but the principal investigator of the trial disagreed. Any semblance of control over options is dashed unless you have the financial resources to pay your own way. We wound up taking an incredible risk of taking an advance on Michael’s small life insurance policy through the school district. This required a document stating that the patient had less than a 10% chance of surviving two more years. Dealing with these business matters during such a crisis is surreal, not to mention cruel. But we decided to squeeze as much retirement time as we could into Michael’s healthy times because we weren’t going to have the future we’d hoped for so long ago. One of the worst parts of that plan was that if Michael unexpectedly lived to age seventy, the rest of that life insurance would be void except for a stipend that could help with funeral expenses. He worried constantly about leaving me broke if he lived too long. Absolutely hideous.

So we did what we could during the remissions which usually lasted a few months. We spent time with our family. Michael got to meet our second grandchild, to see our son complete his PhD and to watch our daughter get inducted into her university’s athletic Hall of Fame. We traveled to national parks, to the Baseball Hall of Fame, FDR’s Hyde Park and to the Civil Rights Museum, ticking off Michael’s bucket list items. We went to the Outer Banks and even made it to Puerta Vallarta. When the next bad scan came back, we hunkered down. Michael finally made it to Medicare which didn’t much matter as treatment options diminished. One suggested targeted therapy was $58,000 a month. The pharmacy gave us one 30 day supply under a special program. Michael’s body revolted against it with elevated liver enzymes and a terrible rash. We were relieved when he had to stop it as we had no idea how we’d have paid for it.

In 2015, declined by a trial with options shrinking, our oncologist applied for a new immunological drug being used in experiments with lung cancer and melanoma patients. We had no idea how he got it approved but Michael was failing and getting closer to death. Each infusion, every three weeks, was over $23,000. We were appalled, terrified and grateful because Michael was an exceptional responder to that medication, which bought him an extra year of life. By that time we’d procured the best supplemental Medicare insurance policy available which was covering that outrageous amount of money. We were able to do enough research regarding treatments, insurance and drugs for an almost impossible outcome, if not a cure. But the multiple levels of anxiety and stress are almost impossible to describe.

At the beginning of 2016, we got a new oncologist. Michael had a liver enzyme flare and had been taken off his expensive miracle drug. This doctor, who was observing that Michael was holding his own, wasn’t willing to re-challenge him with the effective meds to see if his enzymes would normalize. He was off treatment for that whole year, continuing to have negative scans. But he started behaving strangely at the end of that year. I knew something was terribly wrong and was begging for a brain MRI which the doctor felt wasn’t justifiable. At the end of January, 2017, I convinced Michael to go with me to the ER to get what hadn’t been prescribed. That brain MRI showed what’s most easily described as cancer meningitis, impossible to pick up on a CAT or PET scan. To me this was another example of opting out of a more expensive procedure according to the business model hospital management style. Although his immunological drug was finally prescribed along with hideous whole brain radiation, Merkel cell finally had its way. Michael died on May 28th, 2017.

Cancer can happen to anyone. In the U.S., the burdens placed on average families make coping with it infinitely more difficult than the already egregious task of losing loved ones. I was lucky to have Michael for longer than we thought. Of course we both wanted more time. And we both wished we hadn’t had the exhausting financial distractions complicating our emotions. I promised myself that I would try to be a helper as much as I could for others who are going through these tough times. Sometimes I can’t believe I came out on the other side of my most unforgettable painful experience. I remember all of it. Doing something positive for someone else feels right. The truth is, what would really be right is national health care, like that in other more civilized countries. If I figure out how to get it, I’ll let you know.

Happy Birthday, Fern.

I first published this post a few years ago. At the time, I was still adapting to Michael’s death, now impossibly, almost five years ago. For me, it’s not dated, though. I can never have a new experience or a new photo of either Fern or Michael. They live on in my memory, although Michael remains a mysterious daily presence in my life. When I think of unconditional love, I think of them first. Until I am no longer me or until I’m gone, I expect that I’ll be revisiting them every year. So here is my annual homage to Fern.

3C8CCC40-B76D-4D59-95A7-41A1A23B04A7Dear Fern(or Phil if we’re using inside jokes) 

May 14th. Another one of your birthdays. I start thinking about it in April, girding myself for the slog through all the challenging events that are emotional triggers for me from early May into early June. Now I have to contend not only with the hole where you belong, but with Michael’s absence too. I’m glad I never had the gift of vision to see the future, to know in advance that my biggest loves would be gone, leaving me here with memories so vivid and palpable, that processing your absence is still a challenge. Today I realized this 71st birthday of yours, and the anniversary of your death in October, will officially mark the sum total of the entire length of our relationship and a bit more. We knew each other for 30 years and now it’s 34 years since you’ve been gone. It’s hard for me to wrap my mind around that fact. I’ve already spent more than half my life without you. The truth is, I still remember so much about what we meant to each other, what we shared, the good times and the awful times.32C43330-A5C5-489C-BA0F-FBC53F71592F

I can close my eyes and look straight into yours, seeing your expressions which I knew so well. Often they were highlighted with your favorite color eyeshadow, Daffodil, a ridiculous yellow color you chose to go with your brown v-necked sweater which reminded you of one of your high school crushes. And those absurd glasses you wore, one pink pair and one blue, decorated with little rhinestones in the corners.  I can feel you. Your angst and pain, your frustration and anger. I still mourn you, all of you and am angry that you were victimized to the point that death became a relief for you. I remember those harsh realities. But I also remember laughing. Lots of laughing. 4ABA27D8-A985-4EC3-98EE-DDF770BE0367

I remember visiting your house at 8138 S. Jeffrey in Chicago. I lived in an apartment so being in a house was pretty impressive. You had a piano in the living room and you played Clair de Lune for me. We went into your bedroom that was all yours, unlike me who always had to share with my sisters. You had a double-sided chalkboard that flipped in circles and on it I wrote the “Personality Plus” program that I thought would help you be happy.
We bowled at the Pla-Mor bowling alley and ate at Carl’s Hot Dogs which was so close to where we lived. 8627576A-D3B6-418E-92D7-5A1AEFB216EB

I remember when we saw the Beatles at the Chicago Amphitheater. The joy and madness we shared, with Bobby Hebb of “Sunny” fame, and The Cyrkle who sang “Red Rubber Ball” as we waited impatiently for our idols. My loving Paul while you loved John was so convenient. We had no friction or jealousy and were happy to sing their parts in our endless harmonizing. 0C1F11C6-338D-487D-95E0-78C18DBD490B

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I remember sitting in the Woods Theater all day watching “Help” when they just re-spooled it for hours, instead of having to pay for each viewing. By the time we left we’d memorized most of the lines.12FA147B-0C0E-4BE0-8193-44E0CB9446FFI remember sharing the great adventure of our train ride and trip to Montreal for that magic summer world’s fair, Expo ‘67.

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I remember our three sarcastic little novels which I still have in my nightstand drawer in which we skewered everyone we knew and all the absurdity of high school. I remember reading our diaries to each other every night.223A0B6B-1B10-40EC-ABA6-273408276E2E

I remember March 20th, the day we anointed to mark how we felt about our crushes. I remember when at 15, we were smart enough to realize that we’d need a special perfect childhood day to conjure when things got too hard as adults. The details of that day have always stayed with me. That day is still my retreat. I feel it, smell it and hear it, with you by my side. Hot sun with friends by the lake, cinnamon rolls, shimmering pavement, burgers and fries, hearing Elinor Rigby for the first time. 

remember photo day at Comiskey Park, and Cubs’ games in the bleachers at Wrigley Field. I remember eating at the Shoreland Deli, Rib Hill and Seaway’s on 87th Street. I remember countless Black Hawks games, standing room only, and all the songs we wrote about our favorite players to Beatles tunes, memorializing your passion for Bobby Hull. I liked Doug Mohns.

We were both lefties which seemed to mean something. I don’t know why we thought that made us special and inevitable as best friends but that’s what we thought.  I remember our disastrous attempt at being roommates as freshmen in college and how we fixed everything later, after I moved out.0C3960C9-6803-4650-815D-414700168023

I remember when you pledged a sorority as I stood watching, understanding your need to do that, while never wanting to join you.  I remember you coming to be with me as I tried acid for the first time. You didn’t need any drugs – you were already naturally impaired. I remember so many of your emotional crises.53E6B120-1ECA-426F-81BB-1331FED3EBE2

I’d get phone calls from strange people saying you needed me to come and get you, and I always came. I talked you down from your latest ceiling and tried hard to be a mom you never really had. C77649E5-5E0B-497D-92D5-CAA7B3052E9F

I remember how we loved mocking Rosamund du Jardin novels. I remember your flying fingers at the typewriter, on the piano and eventually on your court-reporting machine. I remember how you came to rest your overworked brain when you hid out in the many houses I shared with Michael. I remember my visit with you in California, the year before I got married.F879509C-DA8A-4A5B-8593-40452FA78D51

We hiked in Muir Woods and bolstered ourselves mentally as we set off to live like grownups. I remember your life as an au pair in Europe and your marrying Omar and your not having babies. I remember taking a break from you after I felt you’d sucked all the life out of me.F161068C-51F2-4439-8031-8A87EE866C25

And then I remember forgiving it all and finding you, to be connected with you the night John Lennon died. I remember the first time you met my daughter. And the time we met after not seeing each other in a few years and your relief that I didn’t have a “mom” hairdo. We hopped into a photo booth that day, you making awful faces.

I have every letter you ever wrote me.

I have our class photos from elementary school and our high school yearbooks. I remember your life getting more challenging as mine was getting more solid. I wanted to make you better, to make you survive, and more than that. I remember our last conversation, when it felt like you might get back here from Utah, to come and stay with us so we could hold you up while you climbed the hardest of your internal mountains and memories. I remember you saying that the worst part about contemplating suicide was realizing how hard it would be for the ones you left behind. I thought we were speaking rhetorically.  I didn’t understand that as you told me you loved me that Sunday night, that you were saying goodbye. On Monday night, you were efficiently taking your life. As I slept. I woke that night from a terrible dream, a dream in which I was dying. I sobbed inconsolably in Michael’s arms as he tried to reassure me that I was alive and well. I know that was the moment you faded into the oblivion which had become your inviting sanctuary. It took two days for me to learn that. I learned everything I could from your Utah cohort. I couldn’t work or do anything for days. Eventually I rebounded from that torture. One night I dreamed of you, dressed in a red turtleneck sweater that made you look beautiful and exotic with your dark hair.976AF758-05C7-41AC-BB33-45ED1C907ED4

We went toward each other and when I put my arms out to embrace you, you went right through me and I knew that was a message. A message that you were where you needed to be and that was ok. I accepted whatever that dream was but I still miss you, always. I still think of what it would have been like to be old together. You were my family. I still can’t hear Beatles tunes on certain days when my wiring is in high gear and I dissolve into the familiar companionship of grief. And I go on. Who knows why? I’ve never been religious and I’m not the world’s most fanciful person. Still, I find myself wondering if somehow, you’ve bumped into Michael out there in the universe, who’s taking care of you like he used to help me do it when we were young. Wouldn’t that be wonderful? Maybe one day I can find you and we’ll be together for so much more time than we lost. Happy birthday, my precious, oldest friend. I hope I’m long gone before I ever forget you.

One More Time

My friend Jan’s 2006 Toyota Highlander with 300,000 + miles on it

A few weeks ago my next-door neighbor Jan told me she was sorry to be parking her new car, less than a year old, so close to my driveway. Her old Highlander just wouldn’t start any more and she said she was having it hauled away as a donation to a charitable group which might make it usable again. She wasn’t thrilled with her new car, but felt the old one had done more than its duty to her, so she was ready to adapt and move on. I made a mental note of it and proceeded to my own lists of things to do. However, I soon noticed that it not only kept being parked out on the street, but was being moved from one space to another, eventually winding up back in her driveway. Yesterday afternoon I wanted to give her a book so we met in the drive as we’ve been wont to do since the pandemic started. While chatting, I asked her what happened with the planned departure. She said she’d called a towing service who came out, were able to jump the battery and recharge it, leaving it completely serviceable. So now it’s going nowhere. She loves that old car and as we talked, we were suddenly off on reminiscences about our vehicle misadventures from our youth, when we drove cars that were mostly falling apart. I remembered one of ours whose floor was rotted out. We were stopped by a police officer for having a nonfunctional taillight. He took one look in that old white Nova and told us to drive it home and never take it on a street, ever again. Ah, youth.

My 1964 (?) Chevy Malibu
Hit in the rear end

I honestly can’t remember how many old junkers Michael and I owned in our early years together. Most of them were ‘60’s Chevrolets of one make or another, with an average cost of $150. The one I loved most was the silvery blue Malibu which we managed to keep running for several years. I remember driving it to Chicago before our wedding, absolutely certain that it wouldn’t break down on that trip. Which it didn’t. What happened to that blasé confidence that used to be my primary attitude? I still have confidence, but life has definitely made me more cautious over the years. Anyway…Someone smashed into the rear end of that car while I was driving west on Springfield Avenue. The culprit’s insurance payout was more money than we’d paid for the car so we pocketed the cash and tied the trunk closed with a piece of rope. As Jan and I talked, I suddenly remembered that toward the end of that car’s life, it honked every time I made a left turn. That memory elicited a good laugh. I started thinking about all the small memories tucked away in our minds, recorded forever but not always easy to access. Just how do we get them out of the layers in our brains?

Detail of the cerebellum from Self Reflected under multicolored light. Photo credit: Will Drinker and Greg Dunn

Dr. Greg Dunn (artist and neuroscientist) and Dr. Brian Edwards (artist and applied physicist) created Self Reflected to elucidate the nature of human consciousness, bridging the connection between the mysterious three pound macroscopic brain and the microscopic behavior of neurons.

The brain is composted of about 75% water and is the fattiest organ in the body, consisting of a minimum of 60% fat. Humans have the largest brain to body ratio of any animal, and the blood vessels in the brain, if stretched end-to-end, would be about 100,000 miles long.” Rehabilitation Institute of Chicago

Earth – NASA

According to multiple sources such as Scientific American and NASA, the circumference of the earth is approximately 24,901 miles. That means that if you circle the planet four times, you bank about as much mileage after that journey as what lays between our ears in our discrete rolled-up brain. That’s a lot of room for the incredible number of daily operations going on in there, not to mention the storage capacity of stuff like a car that honks at every left turn that was junked over forty years ago.

I think about the ways we paper over do many hidden memories. In my community, a local radio station has a slogan that drives me crazy. After a pedestrian example of a random daily childhood event, (most of which occurred within a time frame when I was already an adult,) a childish voice says “a simpler time.” Ha. When I was a teenager in the 60’s, I would arm myself with a bottle of baby oil which I’d slather over my body. Then I’d lie in the sun for eight hours, either at Rainbow Beach at Lake Michigan or poolside at the Thunderbird motel, which let you stay all day for a dollar. I’d come home with flaming red skin and blisters. After the pain stopped, I thought I was gorgeous. Was that a simpler time? Of course not. I was paving the way for full body dermatology checks in my adult life to catch skin cancers before they catch me. Life seemed simpler but really I just didn’t know any better.

A simpler time?

I’m not sure that the sentimentality of “simpler times” is anything other than an excuse for the escapes everyone would like to make when the world feels like too much. We pile all these innocuous respites on to our overwhelmed brains. There weren’t really simpler times. Just think, there’s a massive playground full of distractions right inside your mind, if you can only gain access. Loads of hidden memories lying there to provide texture to our current times with the layers of the past. Practicing my own brand of a little laziness seems to help me peel back some of those brain folds. Now that more tolerable temperatures are allowing me to sit outside without freezing, getting drenched or boiling, I plop myself in a chair, poke headphones into my ears and allow myself the luxury of listening to a random selection of tunes. I think it’s commonly agreed upon by the medical profession that listening to music is calming, reduces blood pressure and anxiety and improves memory and sleep. For me, it holds both evocative connections and triggers to people and to the past, unfolding long-forgotten events from ages ago that don’t often find their way to the front of my consciousness. I’m just usually too busy trying to accomplish all the tasks on my to-do list. Recently I’ve been thinking of what I’d like to experience one more time. Most of them are impossible for one reason or other. But I can find them in my head. Here are several of them, in no particular order.

I don’t recall when I became frightened of heights. But when I was eight years old, I could spend a few hours at Wicker Park pool, making round-trips from the water back up to the high dive, sailing over and over through the air with not a shred of fear. One more time.

Buckingham Fountain by Lake Shore Drive, Chicago

I’d like to feel myself cutting all my high school classes for an afternoon like I did back in 1967. Fern and I would be tooling down Lake Shore Drive in her brother Glenn’s black Buick convertible, sharing a sackful of White Castle burgers and fries, listening to WLS radio, our long hair blowing around while we laughed, completely unafraid of any consequences to our delinquency. One more time.

The only house my family ever owned, on 23rd Street, Sioux City, Iowa. After age 7, we lived in apartment buildings in Chicago.

I would like to be standing in the kitchen on 23rd Street in Sioux City, Iowa at age six, with my mom, right before bedtime. She would be getting my glass of warm milk and a sugar cookie, one that she’d made herself earlier in the day. The cookie dough was cut with a round glass, not a cookie cutter. This evening snack would be the last time I’d drink warm milk, as my older brother and sister had finally teased me so badly about still being a baby, that I never drank warm milk again. I don’t really remember how it tasted but I know I was always happy when I drank it. One more time.

Roger Federer

I would like to watch Roger Federer play tennis in person again. One more time.

Grateful Dead – Fox Theater, 1972
Fox Theater, St. Louis

I can’t remember exactly how many Grateful Dead or Allman Brothers concerts I saw in my life. I think altogether there were probably around twenty in total. Because Michael owned a record store for almost three decades, we were comped dozens and dozens of free concert tickets. We literally saw hundreds of concerts, some in small clubs, some in huge stadiums and some in elegant, dazzling concert halls. I can’t think of almost any famous group I haven’t seen, beginning with the Beatles, or any genre from rock to reggae, classical to jazz, R&B to country that I’ve missed. But that Grateful Dead concert at the beautiful Fox Theater in St. Louis, in the early months of my relationship with Michael is as vivid in my memory as if I’m just on a bathroom break with the music still pouring off the stage into an intimate, magical atmosphere, all my feelings elevated into a joyous few hours. One more time.

The cardinal lovebirds

While all these images and feelings tumble around my mind, I am still keenly aware that as the music plays on, I’m in the sanctuary of my backyard, the home of the birds and the bees who frolic in what can only be described as a fecund, lush atmosphere. I’m surrounded by mating creatures from the cardinals to the wasps producing babies in the air, to crawling critters in the grass and on the leaves of my plants. All the while the flowers are bursting forth with powerful sweet fragrances amidst trees heavy with blooms. Only recently I wrote about my four year wait for a kousa dogwood tree to flower, a tree I planted to honor the power of my endless relationship with Michael. This week its first blossoms showed up.

I looked up the origin of the birds and the bees as a reference in explaining sexuality to the young. The closest literary reference appears to come from the first stanza of an 1835 poem by Samuel Coleridge called “Work Without Hope.”

“All Nature seems at work. Slugs leave their lair—The bees are stirring—birds are on the wing—And Winter slumbering in the open air,Wears on his smiling face a dream of Spring! And I the while, the sole unbusy thing, Nor honey make, nor pair, nor build, nor sing.”

There is an irony, with me plopped into the midst of all this robust life-affirming and creating activity. I live in self-imposed celibacy because for me, there can be no other romance than my internal unending one with Michael. Listening to the memory-stimulating music that elicits one churning emotion after another, I am inundated with visions of the forty-five years I spent with Michael. So many one more times I’d like to have with him, some simply too personal to share. But there is one favorite baudy one that always happened during balmy days like these, when I’d be working myself to the bone, pouring the sweat that’s my famous summery trademark. When I couldn’t bear another lopped weed or a trowel movement, I’d stroll over to Michael, swiping at the rivulets dripping down my head and say, “Man, I’m so hot.” He’d look at me, smile and say, without fail, “You’re telling me.” Every single time.

One more time…on I go.

What Lasts

My daughter and son-in-law

Today I went to watch my eldest grandson play a soccer game. My daughter and son-in-law were there, after having enjoyed a rare date last night without their kids. My daughter shared an interesting anecdote that happened on their date, one that somehow feels like the glue that will hold together these slippery threads of thought that have been running through my head for the past few weeks. I’ve known they’re connected somehow but I couldn’t find the link. I’m going to go with this one that emerged from her unusual little story, the serendipitous kind that happens when you spend your life in your hometown.

My daughter and Michael.

At the restaurant where they were having dinner, a young man approached my daughter and asked her if she was married. She replied in the affirmative. He then inquired about her maiden name. My daughter replied that she didn’t have a maiden name, having kept the name under which she was born. She then asked him why he wanted that information. He in turn suggested her possible last name, which turned out to be correct. So how did he know it? He told her that when she walked into the restaurant, he recognized her face as that of his high school history teacher. Of course that was Michael. My daughter’s resemblance to her dad has always been obvious to family. But he’s been dead for almost five years, so this recognition was surprising. He then told her that her dad was his favorite teacher, which may account for the rapid identification. I just loved this story, not simply because of this long-remembered image of my teaching husband, still recalled by a former student long after Michael had left his beloved second career to cope with cancer. The story fit with my currently whirling mind. Recently I’ve been trying to analyze these big existential questions. What is a person’s legacy? What’s the most important contribution an individual can make to the world in the grand scheme of life? What really matters? In the end, most of us are tiny motes in an ever-expanding universe, existing for not more than a nanosecond, given the big picture. After we’re gone, will anything that we did have left anything lasting behind, for whoever or whatever is the future?

Petroglyphs from a road near Moab, Utah. They’ve lasted awhile.

Who am I at this waning time in my life? What am I leaving as evidence that I was ever here? I know that the diversity between human beings is so profound that when these thoughts are considered, the answers will be as far apart as distant planets.

Eventually the time will come when no one will actually remember Michael or recognize our child. He leaves behind his name, engraved on our local library and city building, both built during his terms as alderman. Also a scholarship in his honor which will be annually awarded to a high school senior who demonstrates commitment and dedication to a future in social sciences. As for me, I’ve been stimulated to think about these questions because of many little gnawing irritations of daily life which make me feel like Sisyphus, endlessly rolling my boulder uphill, only to find it back on the bottom to roll anew the next day. Of course I haven’t cheated death, supposedly the reason behind his punishment. But if I could’ve cheated death from taking Michael, I would have, so perhaps that’s the mythic connection.

My order number from Portillo’s, which stayed stuck to the windshield of my disabled car.

So how did I get started down this questioning road? My car, my mostly-reliable-for-17-years car, which about six months ago, started acting its age, was the impetus behind this thought process. The final straw was getting stuck in the drive-through line at Portillo’s, a Chicago hot dog joint where my vegetarian daughter-in-law just had to go because she was craving one of them. Periodically she needs one. And I was happy to oblige. In order to not waste gas in these times of high fuel prices, in addition to not wanting to pollute the air any more than I already do, I turned my car off and put it in park while waiting to order. A friendly young guy showed up, tagged the car window and electronically sent our choices into the building. I paid and then started the engine, ready to move along to the pick-up window. However, somehow my car refused to allow me to shift gears from park back into drive. I tried everything, jiggling the steering wheel, using all my power against the gear shift, turning the car off and on. My daughter-in-law joined in, thinking I was perhaps a little old for this task, but she couldn’t do anything either. I’m still pretty strong but looks can be deceiving. Soon our server realized we were in trouble, disappeared and came back with a burly young man. Okay. Have at it, I thought. I got out and he got in to show his prowess, but despite his burliness, nothing happened.

Annoying warning light that’s been flipping on and off in my car for weeks

I decided to call AAA, my emergency towing company, as the line of cars behind us managed to squeeze past, tossing us hostile and annoyed glares. Meanwhile, as we waited, our server brought our food which we ate. Might as well as we were going nowhere. Eventually the tow truck showed up and hauled us out of the drive-through while we sat at an angle, laughing and feeling ridiculous. After he pulled us out of traffic, he came back with a screwdriver and jiggled a small piece of metal off the gear-shift console, poked it in, wiggled it around and voila! The gears could move. He told me I could drive it as long as I didn’t stop but truly, relying on a screwdriver seemed kind of reckless for someone my age. So he towed the car to my mechanic’s place and left my key and a note in the dropbox as this of course, happened on a weekend. My son-in-law came to drive us home. I went inside to stew about my car.

Dad

I was thinking about my dad. He was a brusque guy who taught me all kinds of things about the world. His lessons started when I was about ten. I think I remember all of them. The car one was this: cars are a wasting asset. Wasting assets are stupid investments unless you have tons of discretionary income. Don’t buy new cars. (He actually bought a new Chevy Bel-Air once, but my older brother snuck my older sister out early one Sunday morning and they drove it into a viaduct. Totaled, no insurance.) I believed dad. I bought my 2005 Honda Accord when it had 50,000 miles on it. A reliable vehicle, I figured I’d drive it until it had rolled for at least 200,000 miles. I had more than that on my 1993 Camry, also bought used, which had lasted for fifteen years. I know that a certain amount of maintenance is required beyond a certain age, for every car. I know I haven’t spent more on repairs than that expected expense, and certainly don’t want to buy a car in today’s crazy inflated market. But things feel more challenging when you’re over seventy, single, with the decisions all being on you. I miss Michael’s input because he was great at working on cars and actually taught me to feel pretty competent. My kids want me to just get a new one so they don’t have to worry about me. I just can’t get there yet. This is what car life was like with Michael and me back in 1972 – how can I just fold now?

So my car’s been in and out of the shop, for months, quite inconvenient. But its not just the car. Everywhere I go, there are never enough employees. I spend a lot of time waiting. In lines. In stores with lots of people. Worrying about mask-wearing and when Covid will just do what it does. And this is just the small stuff. I’m losing track of how many people I’ve known who’ve died during the past year. I just lost my older sister. Too many people I know are getting cancer or having cancer or failing from their cancer. I know this is what happens as you age – more and more people will be gone. Against the backdrop of our mad political situation, where criminals are winning primaries to run for office, where old men are trying to rescind women’s autonomy over their own bodies, (which is only the beginning of the rights they want to abrogate,) where mass shootings happen every day and where war is blazing across the world? Did I forget to mention climate change? In New Mexico, one of my oldest and dearest friends and his family has had to evacuate their home, with fires raging all around them as they shelter nervously between the infernos. Where I live, the weather has been unseasonably chilly and incredibly wet, until a few days ago when it felt like spring. This week’s forecast, however is for blazing hot summer temperatures, expected to break records, accompanied by relentless winds which have been the characteristic of too many days. So, yeah. Basically I’m trying to understand what all this means, from my aging car, to the incomprehensible absurdity of a social rupture which has made me feel like all the principles I’ve held dear for my whole life, are being trampled by individuals I can’t begin to comprehend. I feel like I, and the rest of my generation is running out of time as our aging bodies get caught by inevitable disease and deterioration.

The other day, while submerged in all these thoughts, my daughter-in-law asked me what I liked best about my garden. I immediately replied, “Michael,” because it’s true that we worked so hard together for so many years to create a beautiful space. Every time I’m out there, I feel him in the most amazing visceral way. But later, I reflected on that question because I’m struggling to figure out what has meaning, what will last, what I’ve done to make the world a better place. I’ve donated my genetics to my children and theirs, which apparently is a good legacy because they are working their tails off every day, one to champion the rights of the least capable people in our society, and the other to save the planet, one bird species or land tract at a time. Michael’s DNA is of course critical to all that. I’ve got a cohort of young people who still surround me, evidently because I can offer them a beacon of hope in their own various turmoils. That’s meaningful.

View from my chair which I squeezed into my back hallway to observe my yard on one of those endless rainy days.

Still, I kept mulling over the question of what I love most about my garden because it was reverberating in me. I realized that so far this year, I’ve dashed around outside, clearing, digging, weeding, planting and mowing, only to rush back inside to avoid being drenched. I realized I haven’t really taken any time to just be in it, reflect on it at all this year. So I squeezed a chair into the back hallway the other day, simply to sit and observe my yard. I counted seventeen different bird species in an hour. My house wrens are back, choosing which box will hold their nests, chattering away, bickering with each other. I saw bluejays, mourning doves and cardinals mate within that short time. I was amazed by the startling white stripes on the heads of the white-throated sparrows. The rose-breasted grosbeaks showed up. I checked my yard birds list and realized I’ve recorded 47 different species who’ve visited to date.

Baltimore oriole
Downy woodpecker
My cardinal pair
Bluejay
Chickadee
Cowbird
Indigo bunting

I saw bees and wasps on the wing. So far I’ve only seen two butterfly species but last year was dazzling, with literally hundreds of pollinators passing through this space. I’m hoping for more joyous times this summer as the year progresses. And suddenly, I figured it out. What will last from me, my gift to my place in time, and given my successful perennial plants, my gift to the future, is a habitat. A habitat that is a haven for multiple creatures, many of whom are under climate duress. What I love with such intensity isn’t simply about my pleasure, but is my way of making survival possible for these miraculous characters, who find a way station in their lives right here, that provides sustenance for them and opportunities for reproduction to ensure the survival of their species. At least for a time.

Kousa dogwood over a plaque for Michael

I planted this kousa dogwood a few years ago because its mature posture reminds me of the way Michael held his body. I’ve planted a few perennials in the same space. My most recent one was an impulsive purchase, based solely on its name. I didn’t give a whit about its appearance – I just want it to survive. Even though it is astoundingly corny and so unlikely from my usually sardonic self. I’ve got a soft spot.

Michael’s ashes are in a beautiful box in my dining room. One day when it’s my turn, I want my ashes mixed with his and both of us strewn into our garden. Our habitat. Our honorable little corner of the world. My kids can toss some of us into Lake Michigan and have the rest of us blown into glass vases or paperweights or whatever. But as we blend into this ground, we’ll be what lasts as part of a gift back to this mad planet where we lived. I feel better. This works for me.

What Is Happening Here?

Me at the office of the Prairie Dispatch – 1973

On January 22nd, 1973, I was 22 years old. I was living with Michael, working at a regular job, going to school, writing columns and developing photos for a community newspaper with a decidedly alternative approach to journalism. My co-workers were activists who’d been anti-war, anti-racist, pro-women’s rights, pro-worker, pro-social justice and generally outside agitators. That day was historic because of the following decision by the United States Supreme Court.

Roe v. Wade, legal case in which the U.S. Supreme Court on January 22, 1973, ruled (7–2) that unduly restrictive state regulation of abortion is unconstitutional. In a majority opinion written by JusticeHarry A. Blackmun, the Court held that a set of Texas statutes criminalizing abortion in most instances violated a woman’s constitutional right of privacy, which it found to be implicit in the liberty guarantee of the due process clause of the Fourteenth Amendment (“…nor shall any state deprive any person of life, liberty, or property, without due process of law”). Brittanica.

I’d never had an abortion but I knew women had gone through the traumatizing process. I knew people who had dreadful back alley procedures with terrible health consequences. I knew women who’d left the country for their abortions, headed for abroad where this option was legal, where they’d be safer, but who had economic hardships added to an essentially difficult emotional experience. I don’t pretend to know all the backdrops for these unwanted pregnancies which at the very least, were not likely to produce happy families at the end of nine months. Given the additional layer of inadequate social services to assist those women who would be unable to adequately provide for those undesired children, the limited options for women to be self-determining in this most private situation, struck me as the height of hypocrisy for those clamoring for the rights of the unborn. Sacred in the womb but unsupported out of it? Appalling. And what if these sacred fetuses grow up to be gay, black, transgender or anything other than cisgender white people? Or voters who don’t support Republicans? Aren’t they next on the list of people whose rights need to be rolled back to the dark ages?

When I was older and finally pregnant, by choice with my partner of choice, I never had the tests available to a woman of my age, which could predict whether I might be carrying a baby who might have genetic defects. For myself, those tests were irrelevant because I knew I couldn’t terminate a pregnancy which I’d chosen to begin with my beloved husband. However, I never once judged any woman who made that choice for personal reasons which were none of my business. I never met anyone who took those decisions lightly. Not feeling able to care for a child for whatever the underlying cause was frankly none of my business. It still isn’t. And I don’t believe that choice should be in the hands of government entities. What law is there that controls the private decisions of males? I can’t think of one.

Photo credit – PBS

I simply can’t understand why who people love, and the way they love each other, absent brutality or child sexual abuse, should be of any interest to anyone. What effect does it have on anyone’s life? Why does it matter if it’s not interfering with the way these people intent in curbing the rights of others, have no personal stake invested? I don’t want to impose my views on anyone simply because their lifestyles don’t match mind. Truly bewildering to me.

Why is there a continuous assault on education? Why are people afraid to allow their children to read books that expand their views of the world? Why is “different” or “other” so frightening that anything other than one way, their way, is the only way? I feel that as a group, our populace is getting more narrow, less worldly and just plain ignorant.

How did math textbooks become a dangerous social tool that could corrupt innocent children into adopting what some believe are dangerous, lascivious lifestyles? Why is critical race theory, generally taught only at the college level, being denigrated as a tool intended to make white children feel responsible for what happened in the past? And is still happening in the present? History is written by the victors – I remember that statement. Is this backlash all fear-based? All I know is that it’s a bunch of half-truths at best and lies at worst.

A handful of controlling politicians are making an effort to disenfranchise huge swaths of the voting public. Three Supreme Court justices who dissembled in their confirmation hearings, stating that they believed that Roe v. Wade was established law, only to jump on board the first case they could to strike it down, are now angry that they’ve been outed as liars. The incessant yammering about states having the authority to establish their own laws hearkens back to the Civil War, which in actuality, seems to be a conflict that never really ended.

Religion is being touted in Congress as an American way of life. I thought these rigid constitutionalists understood that there was a separation of church and state, in addition to the fact that our three branches of government were supposed to serve as checks and balances on each other. Seems like muddy waters to me. The press is frequently referred to as “the enemy of the people.” Sitting senators and representatives whose statements have been recorded and played on television deny making those same statements. What seemed dystopian only a few years ago has morphed into the threat of an autocratic nightmare.

I was a teenager when Buffalo Springfield released “For What It’s Worth.” I thought it was provocative back then and spent a lot of time thinking about what it meant to be a patriot. To me it meant the right to dissent when the country was going the wrong way. All these years have passed, years of hope and dreams and years of despair. I didn’t expect to spend my “golden yearsfeeling alternately disappointed, angry and outraged virtually every day. What is happening here?

Coping With Death

Tomorrow is my older sister’s funeral. She died a week and a half ago from that lethal cancer, glioblastoma, the monster that attacks the brain. We’d been estranged for almost seven years, at least according to the accepted definition of what estrangement means – we hadn’t seen or spoken to each other within that time frame. My truth is that I’d been estranged from her most of my life. I never understood the gulf between us but I always felt it. In the early years of our youth, I tried to figure out ways to bridge the distance between us. Our parents had taught us that family was the most important thing, that we should all stick together in a united front against the world. I didn’t question that essential premise much back then, even though mom and dad were both involved in mucked up divisiveness in their own nuclear families. I believed what they told us and tried for a long time to emulate their principles which quite naturally evolved into mine. No matter how much I tried, though, the gap between me and my sister not only remained but widened. The five years’ age difference between us seemed longer than that, almost like a generation. She wasn’t an activist wrapped up in what to me were the critical social issues of our lifetime. While I was demonstrating and getting arrested, she was married and having her first baby. Although there were similarities between us in certain ways, we operated quite differently. She was extremely private and reserved while I liked to put almost any topic right on the table for sharing and analysis. Of course I deferred to her boundaries, as the invisible wall she lived behind was clearly demarcated, with my place definitely outside its secrets. Ironically, despite my own openness, her reticence kept her away from my most essential self as much as I was away from hers. Aside from the superficial aspects of life, we never really knew each other. For days I’ve struggled to remember shared experiences.

I can’t remember many positive ones. Once when I was about five years old, I went with her to the S.S. Kresge five and dime store in Sioux City, Iowa where we lived at the time. She wanted to buy Elvis Presley’s single Hound Dog which she could play on a small portable record player. After she got it, we went to a candy counter where you could peer through glass at brightly colored sugary confections. She got me a small white bag of what were called Michigan cherries, a candy with a hard exterior and a chewy inside. That’s the only concrete positive experience I can recall with her from my childhood. I remember we played school. She was the teacher and she was very strict. For my whole life I can remember her telling me to modulate my voice. I guess I was pretty loud. What is my most vivid memory is of me standing on the tall steps at the front of Hunt School, waiting for her to meet me so we could walk home together. She never arrived and finally I was the last kid standing there. I really don’t understand how I found my way home but I did. I remember descending the hill to our house which was at the bottom and seeing my family looking for me. After that I had a terrible abandonment fears. Every day I asked my mother if my teacher would be at school that day and if she would be home when I got home. Mom lied. There were a few incidents when my teacher was absent and I would become a cross between hysterical and catatonic. Then they’d call my sister to talk to me. She said I just stared at her silently while my eyes looked as if they would bulge out of my head. My mom had been hospitalized, which contributed to my anxiety, but that being left alone was something I never forgot. When I was older, it occurred to me that a ten year old might think if she left her five year old sister at school that perhaps that little kid would just disappear. That’s how I felt, that my disappearance would please my older sister.

Hunt School, Sioux City, Iowa

Our family moved back to Chicago when I was seven. My sister and brother were adolescents. Although I was scared of the move, I think it was much more challenging for them than me. The social atmosphere around us was more sophisticated than our Iowa world and there was significantly more wealth that was obvious to our struggling family. My brother became a real outsider while my sister tried hard to fit in. I knew bits about their lives and friends. My brother was wild and impulsive while my sister fretted and was depressed. Both were academically talented but there also was friction between them and my parents. They were probably angry about their disrupted lives. I was in a separate world with my younger sister, just two years behind me. I focused on her, doing everything I could to have her feel differently about me than I did about my increasingly alienated older sister. Eventually the top two moved out, leaving what felt like a more relaxed family of four. And my parents made it clear that they felt more comfortable with these new dynamics.

Me with my older brother
My brother’s wedding

We all gathered together for family holidays and picnics, seemingly like any other family. But establishing intimacy between all of us siblings never really happened. We knew about the events in each other’s lives but most of our group dynamics were at the surface level rather than in any depth. Eventually my sister’s marriage took her to Europe where my brother-in-law, a doctor, served in the military rather than going to Vietnam. When they returned, they wound up first in Iowa City and eventually across the country in California. We spoke on the phone but visits were infrequent. Meanwhile, my parents who lived close to me and my younger sister, began to experience physical problems. I was there for all of them as was my younger sister. I didn’t feel like a third child. I felt like a first-born with lots of familial responsibilities. As decades passed, my parents eventually relocated from Chicago to live in the same community as my younger sister and me. My dad was dead in less than three years after that move. I became my mother’s caregiver and unfortunately the authority figure she’d always had in her life, the first being her mom and the next, my dad. I hated that role and she knew it, but old habits are tough to break when you’re in your late sixties. She spoke on the phone regularly with my older sister and I know that she complained about me in the same way she used to gripe about my grandma and my dad. Ultimately the distance between my sister and me grew increasingly uncomfortable as I was selected as mom’s power of attorney. I’d jumped the chronological line, simply by default. California was far away from daily problems. Sometimes my sister addressed me as “Sissy” which I found passive-aggressive and demeaning. When Michael developed cancer on top of my mom’s decline into old age, my request to my sister for help was met with a coldness that was dreadful for me. The years up to my mom’s death were filled with disagreements as my sister tried to do her version of helping mom from a distance, a process which complicated my life when my proverbial plate was full. She mistrusted me and I found her “help” to be nothing more than interference. That’s when all semblance of sisterly feelings blew up, with the final result being her complete dissociation from me and my family, along with my younger sister. She cut my kids out of her life and never acknowledged Michael’s death. For me that was unforgivable. I remained in contact with her children who were adults and innocent bystanders to our messy breakup. They were the ones who informed me of her illness. I was terribly sad for her and for them and was immediately aware of how dire the trajectory of her illness would be. But in those years apart, I’d dealt with my own husband’s death along that of my brother and mother. Then there was the symbolic death of our sisterly relationship. I went to therapy and explored myself and my feelings, ultimately pushing back any impulse to try to breach our silence. I thought that any effort to do that would do nothing but create another false connection, one which would never meet my definition of a depthful relationship.

I was haunted by what to do during this terrible time for her. Finally, I recorded myself singing an old family lullaby which we’d all heard as children and which we all sang to our own kids. I felt that conversation would be useless. I sent that video to her daughter who would use her best judgment about sharing it with my sister. Despite her fragile condition, she was moved by my reaching out and with assistance, chose to send me a video response which touched on her current situation and our fractured past. But too much time had passed and her condition wouldn’t allow for really substantive rapprochement. As I wept, I was keenly aware that absent her dreadful disease, I’d likely never have heard from her. A harsh truth. The grief I’ve felt through these swiftly passing few months has been the grief for the “wethat never was. I’m not the first, nor will I be the last person to have been unable to reach sisterhood in my own family. My mind has been inundated with thoughts of the big issues, the meaning of life issues, the unknown world in our brains that with the impact of environmental issues, both social and physiological, make us who we are. Yes, who we are, despite some of our best intentions. Ironically my constant probing led me to a timely topic that has given me much to ponder during this sad time.

Image of brain connectivity – Psychology Today

During the years since I retired, I’ve taken a lot of classes, in person before the pandemic, and for the past few, online. I have a restless brain, always hungry for new bits of knowledge. Some discoveries have more impact than others. In recent weeks, despite these pressing personal, emotional issues, I’ve continued to Zoom in for sessions on cephalopods, the Etruscans, the history of pandemics and most recently, the development of the human brain from conception to birth. This last class will stick with me. Here’s an astonishing bit of information from what I learned in a brief hour:

“The making of the human brain from the tip of a 3 millimeter neural tube is a marvel of biological engineering. To arrive at the more than 100 billion neurons that are the normal complement of a newborn baby, the brain must grow at the rate of about 250,000 nerve cells per minute, on average, throughout the course of pregnancy. But it is not the volume of growth alone that makes the production of a human brain staggering to consider. The great number of functions that the brain reliably carries out and the specificity with which these are assigned to one or another type of cell or small location in the whole assembly are stunning in their complexity..” NIH

Billions of light years in the galaxy – Hubble telescope

Grasping the concept of a growth rate estimated at 250,000 nerve cells per minute reminds me of how I feel when I read about light years, string theory and black holes. I’m completely overwhelmed by these big ideas so outside my daily wheelhouse. Still, interesting statistics like the one about the growth rate of nerve cells in the embryonic brain somehow lead me back to the more common questions about life, perhaps not as huge as those like quantum mechanics, but nevertheless, profound. I wish I could understand why I have been so successful at building some remarkable lifelong bonds with people while being unable to do the same with my sister. How much of our inability to be truly close was pre-ordained by those billions of developments that transpired before we were ever born? Or is that totally irrelevant? I don’t have any answers right now and likely, I never will. I just have to continue to process and move forward. I do know this. Once I was the third child behind my two older siblings. Now they’re both gone and the sense of being the eldest which I carried for years, is now reality. I’d better make good use of the time I have left.

Farewell, Roberta. Peace to you.

Hearing My Young Voice

Fifty years ago I moved into my friend Michael’s apartment with the intent of turning our remarkable platonic attachment into a love affair. He was a bit taken aback as I stood on his porch with my suitcase. When he politely asked where I would sleep I announced, “in your bed.” We were together from that time until his death 45 years later, in May, 2017. The following is about one of my lucky finds that makes me glad I’ve understood the value of history.

My passport photo-1971

I know that there are people who in their deep desire to reduce clutter, have routinely dumped stacks of paper which mysteriously seemed to get taller despite their best efforts. I think I could repopulate vast naked forest lands with the sheer volume of utterly irrelevant documents, advertisements and catalogs which, regardless of my trying to do business digitally, still show up in their physical form in the mailbox on my front porch. My recycling container is full every week. I’m always imagining my castoffs, bundled together with innumerable thousands of others, floating on some giant container ship at sea, going nowhere but in wide circles. A scary thought in this time of climate change. On the other hand, I’m really good at hanging on to every scrap of paper that really means or meant something to me, my ancient journals, letters, love notes, which can instantly transport me to another time in my life. Reading the thoughts, declarations and perceptions of my twenty year old self is simply different than just remembering. I can’t change those words from myself or others to fit what my mind might prefer all these years later. Those are the facts of a moment in time. That’s why I like hard copies and paper trails. They can be destroyed, edited or recycled. But they can’t be unwritten as they were once, long ago. When emails and texts became the more dominant modes of communication, I printed plenty of those too. I’m not the least bit sorry.

Me with a pup in the countryside 1971

Some people don’t like looking back. Personally I’m a big fan of perusing the former iterations of me, all of which make an elaborate mental tapestry of how I got to here from there. Parts of what I read are humiliating. I don’t like seeing the me that I was in certain times of my life. I think the hardest times for me, aside from some childhood traumas which most of us experience in one way or another, were the years 1969 through 1971, from ages eighteen through twenty. I started college in 1968, just past seventeen years old, a little young after having skipped a year of elementary school. I wish that hadn’t been a popular thing to do back then when a kid showed academic talent. For me, that was a stolen year of my childhood. I could’ve used that time to do a bit more growing up. But I didn’t have much say in the matter. When I went off to college I was pretty clueless about what I was supposed to be doing there. I was ready to shed some of the more irritating pigeonholing that seemed to define most aspects of my social existence, but was cautious about moving off on my own. I’m not impulsive by nature. Although I’ve had my moments of taking an intellectual or emotional leap, more often I was thinking and weighing and deciding before I made my moves. That first year of college, I was part away at school and partly back at home. By the summer of 1969 I’d moved along a bit and decided I was going to try new things and new people and definitely, new risks. I felt pretty confident that I was more ready to move ahead after a year of floundering in my past.

Fall 1969 with Pete, the leader of my sensory relaxation group

That fall of 1969 was so much better than the previous year. My classes were ok, I was deeply engaged in my rapidly evolving political ideology and I was trying new things. I was the last person I knew to drink alcohol and try marijuana which both happened shortly after returning to campus. I signed up for all kinds of activities I’d never tried, pushing to get outside the expectations of my former life. I was having a pretty great time, meeting new people and dating. But then I met the person who ultimately shook me off my forward footing and helped me turn into the sniveling wretch I became for the next two years. Al. Our relationship didn’t start out that way. I was pretty dazzled by his wide-ranging intellect but initially, I wasn’t sure I was looking for a serious relationship. After a few months, he was first in professing his love, albeit with the qualification “for now.” I heard that qualification but ignored its implications. After a bit longer, I was hopelessly in love with that guy and convinced he was the real deal, my future partner. Bad signs were flashing in my head but I thought, like many innocent people, that with time, he’d get past his immaturity and realize that it was just fine to discover “the one” at an early age. I was so sure everything would work out that after months of resistance, I stopped being the last virgin I knew, positive that we’d get through the next few years and wind up together.

My journals from late 1969 through most of the summer of 1971 are absolutely cringeworthy. Page after page of despair over the yo-yo emotional disaster I called our relationship, which consisted primarily of painful breakups and passionate reconciliations. I did a lot of raging and crying to his stone-faced responses. We engaged in this awful cycle so many times that I became partially inured to it, dully holding on to the hope that eventually we’d get past all of the madness and be together and happy. I didn’t fully understand back then that after a while, that kind of instability and pain can deeply erode your soul. He saw a lot of other women while I dated one other person which was in keeping with who I’d always been. But somewhere inside me, I knew that I was in terrible shape and that I needed to do something to break the toxic cycle in my life. I wanted a big break and some distance to work on myself. Two girlfriends and I cooked up a trip to Europe which would take place in the beginning of 1972. I still had a couple of classes to complete but I was so worn out and frazzled that I didn’t care. So we made our plans. Al and I were still going through the misery of our cycling madness. But that summer at a wild hippie wedding which was classic for that era, I had the great fortune to meet Michael. Our electric instantaneous friendship was a game changer. I’d literally forgotten what a healthy progression in getting to know someone felt like. I was still hassling around with my feelings for Al and Michael had a girlfriend. But we started spending a lot of time together.

By October, 1971, my journal entries were sounding a lot less pitiful, more thoughtful and redirected from the maudlin despair of the Renee/Al saga to the Renee with a better future and a lot more self-esteem. The film “Say Anything” from 1989, had a character played by Lili Taylor, who composed weepy love songs for her dopey cheating boyfriend – years later she reminded me of myself in 1971. But back to the positive turn in the road. I recently read one entry where I described my renewed sense of faith in healthy relationships where trust and support were central components rather than paranoia and destructive behaviors. My connection with Michael was healthy and I was already a bit nervous about exploring anything more than what we had at that time. By the time I left for home and the upcoming Europe trip however, a few more months had passed and I was growing more certain that there was potential for something more than friendship between Michael and me. He came to visit me the weekend before I left to go abroad. I was positive I loved him but too terrified of mucking up our friendship to do anything about it. In transit to my flight from New York, however, and immune from any unsettling confrontations, I did the impulsive thing, calling him from the road, confessing my love and then disappearing into my travels.

We exchanged many letters and postcards during the time we were apart. Recently I came upon a letter which I wrote but never mailed, written on March 14th, 1972. Too nervous, I know, to take such a big aggressive step. I’m so glad I found it. Listening to my young voice echo across the decades is a rare treat. From my 20 year old self:

Dear Michael,

Today was beautiful, sunny rainbows in Geneva. Lakes, rivers and parks everywhere, it’s oh so clean and lovely. I really appreciate the warm weather, it’s been cold in lots of places where we’ve been; somehow sunshine is trailing us now. The best part of this place is “The Old City,” antique churches with walls of tiled pictures. Also there are swans, ducks, pigeons and seagulls everywhere – I’m getting way into birds here.

I need you really badly right now. I want to talk to you so you can help me sort out my feelings. I’m happy and content with this trip but there’s a lot on my mind and I think that the imminence of going home has something to do with my urgency for communication.

I’ve thought a lot about people on this journey, all kinds, and relationships. I’ve met so many different people on this journey and each one has added an extra shade to my perception of what it’s all about, and me in regard to it all. I’m so much more sure of myself, what I am, who I am and I don’t want to have to change again. There’s so much I left behind, I don’t know how it’s all going to shape up when I return.

Letters are generally an inadequate form of communication, but usually I can tell what’s behind the words. One thing’s for sure, Al’s gone, out of my big picture. I care about him but I never want to be with him again. God it was sick, wasn’t it? The Dennis business has had its ups and downs – interim Dennis, even through the mail, that all feels strange to me.

As you can probably tell, I’m beating around the bush or rather around my head. What can I say to you? I’m afraid to come back. It’s all there, whatever any of these feelings are, and I don’t know how I’m going to walk in and pick things up. I’m so afraid of you. I feel vulnerable and although I know you won’t hurt me, I’m anticipating trouble. It’s hard to describe.

I wish you could’ve gone through this trip with me. I’d really like traveling with you, I know it, we’d just sort of blend together. I want to love you very badly, mostly because I already do and the absurdity of it all keeps pressing on my head. I keep thinking how I’d love for you, me and the dogs to jump in the car and run away forever. Shit.

I keep feeling that I’ve made everything up, that I’m just fantasizing. I don’t know how I got into this mood, I don’t know why I’m telling you all this insanity, I think I’m lonely. Well why not just be honest, for Chrissake? Why should I try implying things when I can just tell you straight? What all this incoherent nonsense amounts to is actually very simple.

According to all indications, I’m most probably in love with you and by very easy calculations have been for some time. Unfortunately external circumstances were a problem and as a result, I never, or my feelings never, had a chance to know if we could work or not. At least I didn’t. I don’t know about you. So the explosion before I left and then dreamland. It’s crazy, I’m still having feelings for others but I’m hanging on the edge of a precipice, you, you’re stuck inside me, and I turn there, to that spot, all the time, at least when I’m experiencing something heavily, or when the pinch is on. What does it all mean? I don’t trust myself in this, or you in this, or this itself, I’m dying. Love at first sight, are you kidding me? Why aren’t you here, why aren’t I there, why did I leave and does it make a difference in reality?

Fuck, I want to sleep with you, dammit, do you understand? What a horrible thing to write, but it’s really true and at least it would resolve something. Michael, I want us to love each other.

I’m about to puke right now, this letter is insensible, unreasonable, hyper-emotional and full of sexual frustration. I wish I wasn’t political, this would be lots easier. I hope you don’t get pissed or upset, this actually is positive and nice somewhere beneath the turmoil. How do you say you love someone when the subject has been carefully evaded or concealed for so long? That’s why it would be better to talk, look and touch, clear the air, the confusion and figure out the real difference between fantasy and what’s really happening. I know you’re fucked, too, you keep trying to get it all down but you’re uncertain, unsure. What a drag. I haven’t heard from you for a while which may account for some of this…paranoia. If you can possibly tell me, what’s going to happen? Have a good spring vacation, please write to me in Frankfort before you split. See you in the beginning of April.

I love you, don’t be uptight about it. It’s just the same as it always was. Reny.

P.S. Say hi to Herbie (my dog)

So this was never mailed. I’m so glad it didn’t matter. The rest, as they say, is history.

A Big, Big Boy

My first-born grandson, shortly after his birth

I have no explanation for my feelings about being a grandparent other than that as with so many aspects of my life, I’ve always felt outside the mainstream. My own mother was a wonderful grandmother and in general, a kid-lover extraordinaire. I can’t count the number of times when she and I would be somewhere together, in a store or a restaurant, just anywhere, and she’d say, “look at that baby – isn’t she adorable?” She would be thoroughly engaged with the little stranger, trying to make a connection, to establish contact. I would be utterly disinterested. Why on earth would I care about some cute random baby? I had more important things on my mind. I never thought as I was growing up, that I needed children in order to have a full, rich life. And grandchildren? Not even on my radar. Stating those personal facts makes me feel like a social mutant. I know that for those people who all their lives have hungered for children, and the next generation after those, I must sound like a callous, insensitive person. I’m really not. I didn’t have any judgments about those who dreamed so differently than me. But that absence of interest in kids was my truth for a long time.

I wanted a partner. When I became involved with Michael in 1971, ultimately moving in with him in 1972, I wasn’t thinking about what kind of father he might be. I was thinking about him strictly as a companion for life. I wanted to be with someone who accepted me as I was, who would be with me through whatever the world tossed at us. I never wanted to be divorced. After our four year trial period, we decided to marry. At least I did. Michael, who was opposed to institutions, went along with my desire. Then we proceeded to keep doing what we’d been doing. A few years passed. Michael really wanted to start a family. I agreed, albeit a bit uncertain. But as the process took longer than we’d thought, my interest and focus grew exponentially. By the time our daughter was born when I was past thirty, I found myself more than ready to be a mother. Michael and I’d had ten years alone – we were both prepared for the changes a baby brings to your life. Then five years later we had our son. By that time I was determined to do the best parenting job I could, having found my own kids to be the most fascinating, challenging and important interests on the planet.

I’ve never forgotten that line from “Ferris Bueller’s Day Off.” Our kids’ lives seemed to speed by, leaving flashing images in our minds that ranged from initial toddling steps to tying shoes, from waving goodbyes on the first days of kindergarten to backward looks as we drove away from college dormitories. Jumbled in were soccer goals, three-point shots and volleyball kills, along with high school debates, musical performances and spelling bees. Laughing, crying, arguing and cajoling. Miserable and hilarious vacations. And lots of graduations. Then eventually, the kids moved along into their adult worlds and life went back to just Michael and me. We didn’t suffer from empty nest syndrome. We went back to the time before we were parents and easily remembered how to be those same people with added emotional layers and some gray hair. I was content. When our daughter got married I had no aspirations for that mystical grandparent thing. I’d heard plenty over the years about how great grandparenting was, all the goodies of parenthood without any of the hassles. If there is a biological foundation to desiring the further manifestations of myself in a new generation, I must’ve missed that gene. I think my daughter would definitely back me up when I say that I never once asked her when she was going to give her dad and me a grandchild. I’d thrown myself fully into loving my two kids and didn’t believe for one second that I would ever feel anything close to those powerful emotions with any kid of theirs. If that makes me weird, so be it. I still feel that ferocious love for them, as I do for Michael.

Eventually my daughter became pregnant and I was happy for her, worried about her and everything else that comes along with that huge event. That time of my life was interesting. The baby was due in September 2010, when I was approaching the end of my 33rd year at my job. I’d worked with the same people for those decades at our small public official domain. I was the youngest of the four of us and all of them were retiring at the end of 2009. I was left with a new staff, all of whom were significantly younger than me and I was having a tough time managing the new atmosphere. I was training everyone but feeling like the proverbial fish out of water. I had enough sick time and vacation time to get me to the 35 year requirement for a full pension, but was not yet old enough for Medicare. So after some long talks, our family agreed that I would retire in October to become the grandchild’s caregiver, with my kids’ only daycare expense being the coverage of my health insurance policy which I’d use until I became Medicare-eligible. So voila. My grandson was born in mid-September and I retired in October to become a full-time babysitter when he was seven weeks old. Welcome Gabriel.

I was definitely fascinated with this new little person and so glad I could relieve my daughter of the anxiety and sadness I’d suffered when I had to leave her with this random woman called “daycare provider.” I did a lot of crying in the driveway before I managed to get myself to work in those days. My kids were comfortable knowing that absent the unpredictable, their kid was going to be loved and unequivocally cared for during their time away from him.

But being home all day with an infant was a huge adjustment for me. I was going to be spending more time with this kid than I’d spent with my own after my maternity leave ended. I was accustomed to being out of the house all day, my schedule dictated by no one but me. I’d been a full-time working woman my whole life. I was also nervous. I hadn’t taken care of a baby in well over 20 years. I wondered if I had the internal resources to adjust to these big lifestyle changes.

As a member of the “adapt or die” club, I opted for adapting. Slowly I began to find my old skills. In addition, I decided to really focus on this little boy’s daily changes, because truly, the development process is a fascinating experience. I took countless photos of him to send to my daughter and son-in-law during the day. I also kept track of any new and exciting moment in his progress in scribbled notes which evolved into an annual birthday letter. As of now there are eleven of those to be opened on his eighteenth birthday. I did the same for my kids, a delightful surprise for them to read about those early life experiences buried somewhere in their brains. When Michael came home from teaching we shared precious time together. Both of us were pretty creative, enjoying inventing amusements for little Gabriel while also enjoying ourselves. Michael had wanted so much to have the family he’d missed in his own life. I’ll always be grateful that he got the bonus of being a grandpa as well as a dad.

I remember my mom always talking about the difference between coping with an irritable, cranky baby and then being with the ones who are easy to love. Gabriel was one of the latter. Sweetness and sensitivity oozed out of him. He was alert and responsive. As I relaxed in my new role, I just decided to do whatever felt good for me, optimistic that he would just do the same type of adapting as I was. I played him lots of music. One memorable afternoon when he was about 5 months old, I put a Leo Kottke CD into my player. That little boy laid his head against my cheek and listened to the entire album without moving. In time, I discovered Baby Einstein and all the new internet marvels that combined all kinds of music with shapes, letters, numbers and animals. But I’m a hard core rock and roller with roots in the ‘60’s and ‘70’s. I found flash mobs on YouTube with music that ranged from the Blackeyed Peas to Lady Gaga to the Beatles. We listened to Ode to Joy and The Four Seasons by Vivaldi. Gabriel knew that Itzhak Perlman had a violin solo in that last one. We read books, learned to play catch and strolled through the neighborhood. We played in the backyard with toy lawnmowers, kiddie pools and hammocks. In the winter we made his first snowballs and snowmen. And he grew and he grew.

I come from what I’d call a silly ditty background. My parents sang all the time when I was growing up, classical kid songs, movie themes and lullabies. I sang them to my kids along with a mix of my favorite tunes with ridiculous lyrics tossed in for fun. One of compositions for my little companion began with “Gabriel, the big, big boy, Gabriel who’s not a toy…” followed by a string of nonsense syllables. If he had a movie about his childhood, that would be its primary song. But time moved fast. The baby became a toddler became a little boy. I took him for his first haircut, and was with him for his first dip in Lake Michigan. Michael took him to swimming lessons and practiced bike riding with him. We started having lots of questions and teachable moments. Then Michael was diagnosed with cancer in the midst of those early times. With schedule juggling and a cancer remission, I managed to get Gabriel to the fall of 2013, when at almost three, he finally went off to the same preschool his mom and uncle had attended. By this time, my daughter was pregnant again and I hoped that I would be caring for baby number two in January, 2014. Sadly, Michael’s cancer came roaring back in November, 2013, just two months after Gabriel started day care. I only had one shot at helping rear a big, big boy before turning my attention to Michael’s dire circumstances which led us on an emotional rollercoaster for the next three and a half years.

We were so lucky that our daughter and son-in-law had established their professional careers in our hometown, enabling us to all be together as we navigated Michael’s illness and be close to the growing boys. When Michael was in his healthy moments, we stuffed in as many retirement-type trips as we could. When at home, and during treatments, we spent lots of time with the kids.

From the end of January, 2017 until his death that May, Michael’s health was in a steep decline. He was hospitalized for 32 days and I stayed with him throughout that time. Our children visited often, bringing our grandsons with them. Our youngest was too small to understand much about what was happening but Gabriel was apprehensive and full of questions. He wondered whether cancer was contagious, how you got it and whether he might have it too. The big, big boy was coping with life’s biggest challenge. We were truthful with him and age-appropriate. I thought he handled himself better than many adults who might find themselves in such a painful situation.

Michael always wore a bandanna when he exercised. During chemo when he lost his hair, he found them to be useful head coverings. Michael gave Gabriel one which he wore companionably. When Michael died, I gave Gabriel Michael’s favorite which he wore in solidarity with his beloved grandpa. The big, big boy indeed. Aged six and a half.

During the past five years, my relationship with Gabriel has deepened. I can’t quite understand if we always organically shared similarities or whether it’s more about my way of nurturing him. Likely it’s a combination of both, but the truth is we get along really well.

I took him to see The Nutcracker and to ride a pony. I’ve removed slivers from his hands. We’ve always had free flowing conversations but as he’s maturing, we talk about a wide variety of issues from his personal interests, school, other kids and video games to science, conservation and mythology. During the pandemic, aside from the times I spent with both my grandsons, he wanted more grandma time. And truthfully, so did I. His company is stimulating and he’s brought out the teacher in me. We’ve done art projects, worked on geography and have regular field trips into the country to hunt for birds, deer and murmurations.

Yes, I am the grandmother. But this guy who’s now eleven is tuned into me as a human being. I remember having had a rotten morning which I shoved away when it was time for our meeting. He stepped into my car, gave me a look and said, “you seem a little gloomy. Although that’s perfectly understandable.” A unique perception from a kid who can not only feel something but can find a way to accurately communicate about it.

One day in the not-too-distant future, his social and school needs will bring this incredible unexpected gift of weekly time to an end. I’ve broached this topic with him but for now he thinks that’s impossible. I know better but I appreciate his sentiments. He tells me that he trusts me completely, that he’s learned at least one third of his knowledge from me and that he sees no reason why he’d want to give up our time. Such is the beauty of youth. He’s already towering over me and there are demands and urges coming toward him that I know about while he’s just beginning to be aware of those changes.

Last week he told me that even though he knows I’m his grandma, he also considers me a close friend. So it appears that my attitude about not being a classic grandparent has evolved in a way that suits my temperament. I don’t see that Gabriel is a more welcome alternative to my two kids who still are foremost in my heart. But what I’ve built with Gabriel wasn’t what I expected. I’m trying to work my way into something similar with his younger brother who is a different personality. Gabriel says, “look grandma, you just didn’t get to take care of him for three years as you did me, so you need different expectations.” Maybe so. But I’ll still try. That Gabriel. The big, big boy.

If I Have to Live in a Movie, I Wish it Wasn’t “Network”

The film “Network” debuted in 1976 and was nominated for multiple Academy Awards. If you watch it, you’ll sense its prescience. An aging anchor with failing ratings blows his top on the evening news, leading to his popularity surge among his audience. The network appropriates his wild style and uses it as a kickstarter to its resurgence among its competitors. The lasting image from the film which made its way into the lexicon was the anchor, rain-soaked and raving, “I’m mad as hell and I’m not going to take it any more!” That line resonates with the public who in turn hurried to their windows screaming their frustration into the universe. Sound familiar? Our daily life has a remarkable resemblance to that moment in time. Over 45 years ago, the writing was on the wall…or in the screenplay. Definitely worth a watch if you’ve never seen the movie.

Photo by Screengrab

I haven’t done any shouting out my window but I’m certainly feeling overwhelmed by this mad world around me. I am definitely distracted. Uncomfortable. Cantankerous. Grumpy. Feeling scattered and somewhat powerless. I’m trying to remember what I learned in my class on Zen practices a year or two ago but the truth is, I wouldn’t say Zen is my natural state. Multiple situations, both global and personal, are distressing. I manage to find a few bright spots in this life but I’m definitely irritated. I’m obsessed with the word “umbrage.” I’m feeling umbrage about a variety of issues. In the midst of so many serious challenges I find myself appalled and offended by what apparently seems reasonable to others. So I’m going to unload a few of those and then squiggle my way back to a bit of good. I’ll begin with the soothing idea of forest-bathing, offered as an antidote to life’s stresses.

Forest Bathing
From the Global Wellness Institute

Forest bathing and forest therapy (or shinrin-yoku) broadly means taking in, in all of one’s senses, the forest atmosphere. Not simply a walk in the woods, it is the conscious and contemplative practice of being immersed in the sights, sounds and smells of the forest. It was developed in Japan during the 1980s, and in 1982 Japan made this form of mobile meditation under the canopy of living forests a part of its national health program. Researchers, primarily in Japan and South Korea, have established a growing body of scientific literature on the diverse health benefits.

My local arboretum – video from yesterday

I would be the last person to argue with anyone who suggests that immersion in nature is good for physical and spiritual health. I try to experience the ecosphere for at least a short time every day. But these forest-bathing websites recommend 4-day experiences, destination events which I think are totally impractical for so many people. Everyone doesn’t have the financial means to drive potentially hundreds of miles to the Adirondacks, say from the middle of Kansas, not to mention the time to drop everything in daily life. Isn’t going to a park for an hour or two just as therapeutic? Or at least, doesn’t it have to be sufficient if it’s the best you can get? Being at a spa for four days would be great too, if you have discretionary money to spare. Massages, hot rocks, pedicures and cleanses? Sounds great. But why does living a healthy life which relieves stress have to cost so much? Bigger questions, I realize, but I find these suggestions just so annoying and classist. A lot of folks would just settle for a day off work.

Fern and me -1967
Michael and me

This next article I read which truly annoyed me was from the New York Times. Grief is a part of the fabric that is me. I’m still grieving my friend Fern who died in 1988. I’m not incapacitated or unable to participate in life. But I feel her absence and I’m still sad about it. I miss her, always. And Michael? Anyone who has read one of my blogs knows that I am still Michael-bathing, my comparable forest-bathing experience, which I have magically twisted from a painful grief to one of solace. I have accomplished what I think is a healthy transformation from an initial zombie-like post-Michael absence state, to a dynamic relationship with the world, albeit a sometimes lonely one. Everyone simply cannot or will not, as in my case, fill an empty space with a replacement. In this world of sound bytes and one paragraph summaries, some of us are still in what we we’re in for the long haul. I’m sure the insurance and pharmaceutical companies are delighted to have an additional source of profits, even a narrow one from this new category of mental disorder. A guest author from the Washington Post, Devyn Greenberg, expressed her umbrage at this new definition of grief. Good on her. I’m sure there are some individuals for whom grief becomes a pathology. But this definition is just awful.

How Long Should It Take to Grieve? Psychiatry Has Come Up With an Answer.

The latest edition of the DSM-5, sometimes known as “psychiatry’s bible,” includes a controversial new diagnosis: prolonged grief disorder…

The new diagnosis, prolonged grief disorder, was designed to apply to a narrow slice of the population who are incapacitated, pining and ruminating a year after a loss, and unable to return to previous activities…Its inclusion in the Diagnostic and Statistical Manual of Mental Disorders means that clinicians can now bill insurance companies for treating people for the condition.

Washington Post

Opinion: Grief is love, not a mental disorder

By Devyn Greenberg

The American Psychiatric Association recently updated its bible, the Diagnostic and Statistical Manual of Mental Disorders. For the first time, this highly consequential guide categorized grief as a disorder when it is “prolonged” beyond one year. One year? Soon, it will be two years since I lost my best friend and father, Garry Greenberg, to covid-19. He was 68 years old. I think about him every day. I’m pouring coffee and I hear his laugh; I’m running and I think of something I want to tell him.

A starter home? Photo credit – Rocket mortgage

For a little more of my umbrage attitude, I turn at last to this incredibly annoying email I received yesterday from a woman who evidently has her own blog site on my platform WordPress. I’ll be honest and state with candor that I spend virtually no time on my website. I write my blogs, post them and move on. Now in my fifth year of writing, I’d say I haven’t looked at most other blog sites except for perhaps half a dozen times. Because of what I’ve written, I’ve made contact with other bloggers, several of whose sites I’ve subscribed to as I’m interested in what they say. I’m actually haunted by the absence of one British woman whose blogs disappeared not long after the pandemic began. I’ve never been able to reach her and fear that she might’ve succumbed to Covid. Anyway, I started writing my blog as an historic tool for my family to have in their future, long after I’m gone. I have an entire book on my site that’s a description of Michael’s cancer called “Be 278” in multiple chapters. I know that there are bloggers who have monetized their sites and who have products to sell. But there’s zero evidence on mine that would give anyone a clue that my interest in blogging is economic in nature. So imagine my surprise when this woman pitched her idea about advising potential homebuyers, who might not be able to participate in the housing market for their dream houses, to instead buy a starter home? On my blog site. I was appalled. I answered with an unequivocal “absolutely not.” I still can’t understand the tone deafness of whoever this huckster might be. How did she ever think her business model had anything to do with me?

Now I’m squiggling back to the good, as I mentioned I would earlier in this post. The awful images recently emerging from Ukraine have been gut wrenching. Within my means, I’ve made what financial contributions I can to relief agencies. But it feels so inadequate, as do many of my efforts to make a difference in the dark places in the world. So I found a small way to bring light, which I hope helps a bit. I’ve been researching Ukrainian artists, and so far, I’m sure I’ve only scratched the surface of how many exist. I’ll step outside my irritated frame of mind to leave these beautiful images from the Ukrainian painters. I hope the ones still working in Kyiv, Kharkiv and Odessa and sites I haven’t yet found, are still alive and creating. Peace.

Julie and Farewells

I wrote this blog in 2019. Julie died in March of 2020, barely a day before Covid took over our world. Today her memorial service was finally held, more than two years after her death. The intimate presentations by her husband and friends, punctuated by selections of Julie’s beautiful writing, was powerful. As I sat on Zoom, watching it all, I sobbed and intermittently looked into my backyard, watching birds fluttering around, listening to their calls as the mating season has arrived. How I miss my wonderful friend who loved watching the chickadees visit the bird feeder on her back deck. Rich chose a selection from a note I wrote her, which appears highlighted below, in his eulogy. I feel the same way today as I did back then. Goodbye, dearest Julie.

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I have a beloved friend named Julie. I’ve been lucky enough to have kept her in my life for about 50 years. We met in college. We were part of the revolutionary days of the late ‘60’s and early 70’s. We were anti-war, pro-women’s and civil rights and profoundly anti-establishment and anti-patriarchy. Julie was a warrior-poet. Erudite, well-read, sardonic and bitingly funny, she was my kind of person. She had the courage to head a slate of candidates who were running for office as an alternative student government at our university, with Julie as the chair. Everyone won but her. A more moderate male was elected to the spot which should rightfully have been hers. Hard times for women back then, despite some progress. Still hard times. I knew Julie before she married her husband Rich as she knew me before I married Michael. Today that seems almost as if we were friends in prehistoric times.

She was a few years older than me. I can’t find a couple of excellent photos of her from back in those days but I include a few blurry ones. She was very spirited and beautiful, along with all her intellectual firepower. Julie was a “townie,” born in the community where we both attended college. When she got involved with Rich who was a graduate student, she got a job and stayed in town while he was finishing his degree. They had a daughter who is few years older than mine.B9D44278-8654-4E14-BEFC-FD431D9CC944

When many of our friends made the post-graduation exodus to Chicago, we still had each other and I felt lucky that our two daughters, a few years apart in age, played in the same houses together. Eventually, Rich got a job at a college in Kentucky and they packed up and moved away. We wrote, frequently at first, and then less so. But it didn’t really matter. When we got together, we had one of those easy relationships that picked up where it left off, without any difficult transitions.7A32A9CD-FC31-46A3-95CE-D46E9B683E54

Eventually, they moved to Ames, Iowa where they still reside. They came back here frequently to Julie’s hometown for visits, her hometown where I still reside. Eventually her dad died which was a big deal because he was a department head at the University. I remember going to the memorial service for him which was crowded and blurry because of all the attendees. But I was there. As years went by, Julie’s mom ultimately needed living assistance and Julie moved her to Ames. Visits home decreased. Still we managed to stay in touch.A4A2FEE9-EEAA-4439-A1F9-962D0E1203C6

About 19 years ago, breast cancer showed up in Julie’s life at a pretty early age. It was one of the particularly nasty types, the Her-2 positive version which necessitated that she was blasted with treatment. She clawed her way through all of that and came out on the other side, for which all who loved her were deeply grateful. But about three years ago, cancer reappeared in her liver, the same breast cancer as the earlier one, with a slightly different mutation. How incredible that a cancer can lie dormant for almost seventeen years and then re-emerge in a new place and be so life-threatening. By that time, Michael had succumbed to his cancer and I was a free agent. Cancer can be such an isolating experience. I’d vowed to myself that I would make myself available to loved ones and friends who were going through treatments and hard times.

So I took off for Ames in fall of 2017 to spend some time with my old friends and give them support and empathy in their difficult situation. We had a wonderful visit and although we were uncertain about how effective the treatments would be, I hoped that I’d see Julie again. And that’s exactly what happened. She outlived her prognosis and actually did well enough to make a visit back here last year.

Other dear friends from Chicago joined us and we all were thrilled and hopeful that she would be one of those who’d beat the odds. She had such a good time that she talked about the possibility of moving back here and reestablishing a life in the town of her childhood. We continued to communicate and all seemed well. But suddenly things took a dark turn – the liver cancer metastasized and spread to her colon. An exploratory surgery unearthed too many bad spots splayed out everywhere and the only treatment  alternative was a “light” chemo, as if anything that toxic could actually be termed light. Her response was dreadful with her immune system getting hammered and making her vulnerable to virtually any opportunistic germ. Slowly she recovered from that.20E0A589-208C-4462-B286-AE351D8C92CB

During the US Open that year, she and Rich and I spoke before my personal favorite, Roger Federer’s, match on a Tuesday evening. We were all pretty lighthearted. But the next day, Julie began experiencing dreadful abdominal pain and was hospitalized. After scans and other tests, the doctors concluded that she had an intestinal obstruction which in the case of someone with her disease, was considered a death sentence. On September 7th, Rich sent out a note to family and friends saying that Julie had days to weeks to live and was being transferred to a hospice facility. He told people that if we wanted to plan a goodbye we were welcome to do that and transmitted a message from Julie expressing her gratitude for all the love she’d felt from those of us who’d been part of her life.09A932F1-D74C-4629-9C24-E21E3F828127

I sat stunned in my living room, not knowing what I should do. My knee replacement surgery was still pretty recent and an hours’ long car ride with my leg bent seemed like a terrible idea. So I decided to send Rich a note with the request that he read it to Julie who was being treated for pain while being fed through nasogastric tubing. I wrote this on September 7th, the same day I got this dreadful news.

My dearest Julie,

I have lain beside you in beds and on couches since we were so very young, when we were vulnerable and pained, and when we were angry and valiant, and  so “in your face,” to the assholes of the world. So I lay beside you now, in some ethereal form which should be wordless in reality, but is not in the case of you and me. I remember.

Hours of talking and sorting and handholding. Speaking of love and sadness and mysteries of this difficult world. Gales of laughter through the worst of times. The gifts of our language which we acquired on the journey of this life ring loudly in my head. Julie the poet. I could listen to you for hours and you listened to me, a master of graffiti, as we found the right word that would resonate for whatever was the urgency of the moment.

I have not left you and you will not leave me. Whatever are the crevices that our bodies hold for those who come along and somehow wriggle into the fabric of our person is the place I am in you and the place you are in me. Even when we are converted to ash or dust, that space for each other was settled long ago.

I wish you release from every type of pain. You’ve suffered better life’s challenges because your will came from a place of love. For as long as I am a corporeal being I will lift your banner and try to ease the pain of your dearest family. I treasure what we’ve been able to share in recent years, an affirmation of what is unbreakable and forever. I love you, Julie, for now and always. Thank you for being a gift in my life.

Renee

 

I thought this would be the last communication between me and my old friend and I was terribly sad. But as days went by, there were changes happening with Julie. She decided she wanted her feeding tube removed as it was interfering with her ability to feel close to people. That happened, and eventually, she progressed from a tiny amount of liquids to more solid food with no significant adverse effects. After days in hospice went by, she was able to have her IV pain meds replaced with other forms of delivery and got strong enough to get around without her walker. By September 23rd, Rich informed us that Julie was going into hospice at home where she could look at her own trees through her windows and have the comforts of her own space as she walks down the narrower road to the end of life.

People were invited to visit and on September 26th, I felt good enough to climb in the car for a seven hour drive to see my friend. That was a longer trip than I expected due to construction and traffic and I worried that Julie might be too tired to relate to me. And sure enough, within about 45 minutes of my arrival, her eyes were closing. So I thought I would give her what I could in silence and darkness. I must have a peculiar pheromone, one that my family calls my special sleep “juju” that acts like a sedative on most people. I climbed into Julie’s bed and she put her pillows in my lap, snuggled under a blanket and allowed me to gently massage her until she passed out. And I sat there for about three hours sending my quiet love and empathy to her as she rested.

The next day she felt pretty well and between appointments with hospice people and her daughter coming over, we chatted and talked about everyday life, old memories, death, cancer and everything in between. I slipped out for awhile to have lunch on my own and to give Rich and Julie some downtime and quiet space. I also wanted to find some sweets and fruit that the nurses were recommending for extra calories to provide strength. A lovely cafe with a bakery helped me feed myself and bring in treats that I hoped Julie would enjoy. We stayed up later last night, squeezing as much time in as we could get. But everyone feared that the full time company could prove too exhausting and that she might totally crash today. She said she felt better than she’d anticipated and we talked some more about the big ideas of life with a few light notes tossed in for fun.

Finally the time came to leave as I had a long drive ahead of me, and Julie was scheduled for the aspects of hospice that include visits. Time is a valuable commodity. So we had what might have been our final embrace. Julie is fragile but wept with strength while I held on to myself as I learned to do during all the practice I had in grieving Michael during his day by day decline. I have no idea how long Julie will stay alive or if I’ll have the chance to see her again. This time of my life, as is true for all of us who are aging, will be filled with losses. I feel as if chunks of my history are being carved out of the tapestry that winds out behind me. Of course I have the peculiar combination of pain and the gift of memory which I hope I retain as long as I’m alive. There’s doesn’t seem much point in being around if you know nothing of yourself. But for now, I hope that visiting Julie while she is still cognitive and aware was the gift I intended it to be. It was hard for me. I’m still too close to Michael’s death so I relive that time in moments like this. I’m not sorry I did it though. Love is love and love is pain and pain is love and all is a jumbled mess. At least that’s how I see it. F2153451-61A9-44B3-9B62-2C78E68D5684