Wondering…

The weather is getting brisk. I’m still outside, wandering around, doing garden chores while stopping for frequent photo breaks as I observe nature’s endlessly interesting parade of activities. I’m really fatigued. The election needs to be over. I’m sure many people would agree with me. With the coronavirus still surging, and winter looking so potentially dangerous, the added stress of this political rollercoaster is too unsettling. We live in a time of short attention spans. I’m not sure if that’s because information is delivered primarily through short sound bites and social media or if it’s something else. But somehow, a virus is now being construed as either phony or a conscious agent actively attempting to limit personal freedom. The lack of a national strategy which could guide everyone is instead replaced by a leave it to the states free-for-all and misleading information. So much death. And more to come. The Trump presidency has in virtually every way, ground me into the dirt. I feel like I’m barely above ground.

I’ve never been a hero-worshipper. I believe politicians, athletes and celebrities are just people like everyone else. I admire some more than others, but in my life I think I’ve never been so overwhelmed by the mystique of any one individual to a point where I’ve blindly followed anyone. That’s what baffles me so much about the cult which surrounds Trump. I’m wondering what compels people to dismiss the obvious weaknesses and flaws of this angry, damaged person. I’ve never been able to do that. Tonight I watched the Pete Souza film, The Way I See It, his photographic history of his life as White House photographer for Ronald Reagan and the historic presidency of Barack Obama. I was certainly not a Reagan fan. I liked Obama a lot, but was not a worshipper of him either. Yet, when I watched this film and saw the contrast between the dark, manipulative Trump era and the bright empathetic Obama years, I yearned for that time. I feel like the future of my children and grandchildren is hanging on this upcoming election. I mean that literally. Without the restoration of decency, fairness and inclusion in government, not to mention the belief in addressing the safety and care for our planet, I am wondering what will be left to build on after the four years of destruction of civility in our civic dialogue, the degrading of our institutions and the venal cynicism that has emboldened the ugly underbelly of our divided culture to come forward with its prejudice and hatred. I remember the 2016 election night and am wondering if I can get through what’s ahead with the dual threats of voter suppression and intimidation, plus the refusal to commit to a peaceful transition of power. That is, if we are able to let this pandemic election play out to its logical conclusion with the admittedly greater task of dealing with the flood of absentee ballots. Yes, I’m wondering. Last time, Michael was still alive, the beginning of his final downward spiral less than two months ahead of us. The entirety of the current presidency has loomed over that great loss and my grief. I’ve been wondering all these years whether my adapting to my challenges would have been any easier, absent this Orwellian time. I don’t get to know that. I’ve already voted. I just need to claw my way through the next few weeks, prepared for anything. This year’s election falls on my son’s birthday. An auspicious event or a miserable disaster? I’m wondering how he’ll look back on this time.

All this wondering gets to be too much. So I head outside to be in nature. Today I was thinking that I’m not much different than I was when I was five, wandering around outside in Iowa with a jar filled with twigs and leaves, hunting for caterpillars and lightning bugs. Watching the bees disappearing into the depths of the flowers on the tall hollyhocks and waiting to see them come out, their bodies and legs laden with yellow pollen. As my nose would be after I stuck it in behind them to see what it felt like. I still find my solace out there, my eyes scanning my yard for an interesting event while I work and listen to music.

I track the last of the butterflies, drinking in their sustenance before heading off to warmer climes. I take photos of the flowers hanging on here, even though the temperatures have dropped dangerously low these past few nights, wondering when they’ll be gone the next morning.

I track the fall color of the big maple tree next door, taking the photos through my bathroom window and from the ground below. Soon the branches will be bare.

And I’m continuing my thinking, being buffeted around internally by the random songs on my perpetually shuffling playlist. I was digging up some unwanted volunteer spiderwort plants when the song “Georgy Girl” from a 1967 film sent me back in time to a day when my mother told me that song reminded her of me. The young heroine of the film was somewhat of an oddball bumbler who ultimately found happiness, but she was the last person I wanted to be. I couldn’t believe I still had that bad feeling tucked away, an old aching insecurity that’s part of my life’s tapestry.

The variety in my music has helped direct me to some more positive diversions that distract me from my nagging daily wondering. I’ve been watching documentary rock films from back in the day, which help evoke a more hopeful time although there are too many artists who were gone too early. Great music, though. Janis Joplin, Otis Redding, Jimi Hendrix, Gregg Allman. Oh my.

Woodstock was the first live performance in front of a huge crowd for Crosby, Stills and Nash. Years later, Michael and I attended one of their concerts when we were in our late forties. We had backstage passes and went in with the rest of the lucky people to greet the band. At the time, they were being managed by Peter Asher, once a member of the duo, Peter and Gordon, and brother of Jane Asher, Paul McCartney’s early girlfriend who appeared in A Hard Day’s Night and the movie, Alfie with Michael Caine. I walked up to Peter and immediately spouted all this information. He looked at me, a little stunned, and I reminded him that we were almost as old as he was and not in the usual younger crowd. So sometimes, the flow of memories is flush with nostalgia. We had some great times back in the days before Michael left the music business to become an educator.

Michael and me with Tina Turner.

Sometimes, I get stuck in a period from the past, instigated I suppose, by songs from that era. I was planting spring bulbs yesterday and found myself thinking back to a tough time when Michael was the social studies department head at his school. He thought that the fall schedule proposed by the administration didn’t make much sense and decided to offer his own more logical alternative. I remember asking him if he was sure he trusted the principal and assistant principal to be able to take what could be interpreted as criticism, albeit in a positive way. He was convinced that they were all in a marvelous collegial relationship. His reward for being pro-active was to be stripped of all his US History classes except for the one he wrote himself, Modern American History through Film and Music. So much for a master’s degree in the teaching of American History. He was assigned government classes for the rest of his schedule. I think he was in a bad mood for about three years after that wretched experience. And he wasn’t easy to be around. After a time, my patience ran out as he projected his darkness at home which I thought was unjust. I remember giving him an oral version of what my family calls, “a Renee special,” which is usually a letter filled with truth and bitter invective. He shook himself out of his rabbit hole and wrote me an apologetic note. I hadn’t seen it in years and out there in the dirt, was wondering where it could be after all these years. I never threw away anything Michael wrote me. When I dragged myself inside later, I went upstairs to my study to deposit paper in my winter filing pile which I’m saving for the cold days when I’m stuck in the house. I glanced over to the other side of my desk and saw a small blue notebook that I couldn’t quite place. Then I remembered that Id hastily grabbed on old over-sized purse when I had my brief getaway to Michigan in August and had hastily dumped out what I’d long ago left inside. Turns out it was a calendar which I’d probably replaced with one for the next year. November of 2013 was the month when we were told that Michael’s cancer was back and heavily metastasized. I was pretty overwhelmed back then. I picked the little book up and opened it. Tucked into the side pockets were a sweet email from my son dated May, 2008. And the apology note from Michael, both of which I’d obviously carried with me for years. I knew I hadn’t thrown it away. A sweet find brought to me by the interaction between music and that engine in my head.

So there’s the wondering and the fretting and fatigue from politics. Theres the glorious nature which makes life bearable. And all the music which is both balm and stimulus, which I flow with, in and out, forward and backward through my life. I wonder how much time will be left for me to ponder this extraordinary period in history? I’m going to keep wondering, I know. But I’m taking my own advice which I’ve told myself for a long time – better find a little beauty in every day. That may be all you get. Here’s some of mine from today.

Still on Fire

Despite my best efforts to deny the approach of fall, a week of chilly weather convinced me that the time had come to pack up my mental health kiddie pool. Generally I’ve always been a fall/spring person rather than a summer/winter one. My body runs hot so moderate temperatures are always my preferred choice. My desire to hang onto summer this year is certainly out of character. But that was before “the now.” “The now” is the pause of whatever passed for normal life in “the before.” Oddly enough, normal life in “the before” was still very much a work in progress for me, as I continued my attempt to build a new lifestyle as a single person for the first time in my adult life. The structures I’d put in place to manage my days have all disappeared. My daily swimming is over. My book club hasn’t met, even online, since before the pandemic. Travel is off the menu. My classes which met in person are online – no human contact there. I’m living a small life. For the most part, I am my company. That is, me and my ghost.

Other people have it much harder than me. I’ve had my garden for getting out of the house. I’ve taken full advantage of that refuge. Recently, I had bloodwork done for my annual physical exam. My doctor sent me a note telling me to reduce my vitamin D supplement as my level was getting close to the high side of normal. I wrote back, explaining that I was spending 4-6 hours in my yard every day. Lots of sun during this dry summer. We decided to test me again in three months after my indoor time returned to a more balanced schedule. Maybe then we’ll change my dosage. In the meantime, I’m plotting on how to stay outside as much as possible.

I cleaned out the fire pit I bought Michael years ago, re-chipped the area around it and have been collecting tinder and wood. I bought battery-operated lights to string around that space so I can use it at night. Like most of us who are following the guidelines for safe coronavirus behavior, anticipating the winter claustrophobia and planning ahead seems like a wise choice. My attempts to find manageable plans for myself to handle the inevitable lock-in are in keeping with what feels like a parallel undercurrent going on in me. My attempt to finish writing Michael’s cancer story is something I want and need to get out of myself. I started writing it in April of 2018. I wanted to share what it’s like to have an orphan cancer, what happens to a family, what people suddenly need from themselves, how to live with death in your face every day. I’m on Chapter 12, getting closer to the end of the story. But as I want to push off the inevitability of Covid winter, I find a million ways to avoid reliving the end of that story. I remember it. I think about it almost every day. But I still don’t like it and there’s part of me that dreads finishing. My cancer posts are the least popular of my blogposts these days. Maybe no one feels like reading dark stuff in the middle of a pandemic. Life is harsh right now but painful losses go on despite the overarching viral menace. I’ve certainly gotten mostly used to the finality of Michael’s death. But the peculiar sense of his presence which floats around me all the time belies that fact. Just like all the distractions I find for myself to avoid thinking about the long isolated winter ahead, I can write about almost anything else with ease. I think that’s your basic PTSD which is something you learn to manage as a new part of your life. I don’t think it ever really goes away.

I’ve spent a small fortune watering my plants daily, keeping the flowers alive so I can continue to attract butterflies and bees to the garden. I’ve gotten some new bird feeders to coax those who stay through the winter to come closer to my house. All my tricks are working.

But the inexorable signs of what’s to come are making their presence known. My plants are keeping up a good fight, but they’re withering as they’re supposed to do at this time of year. The riotous colors of fall deepen every day. I love them, as I always have, although sometimes, as I gaze up at the trees, I imagine that each time I blink, they’ve moved closer to their inevitable browning, falling and turning to dust. I still think they’re breathtaking and beautiful. In keeping with my belief that living in the present is best, I’ve decided to embrace this time like I did in “the before.” My yard is full of glorious hues. My favorite trees around town are also ablaze and yesterday I drove around to catch them in their prime.

Going with the flow of nature is the easy part. The outside world, despite my anxiety about climate change, still does what it does, despite my tiny efforts to control the bits of it within the bounds of my exertions. That part of life, detached from the political noise and my inner conversations is about its business, day in, day out. So far, at least, the day rises and the night falls. About that inner dialogue, though…

My books speak to me from their stacks, the ones on the table next to my recliner in the living room, along with the electronic ones that fit conveniently in my pocket. But most of the voices I hear during my days, come through my headphones, hour after hour through my Pandora playlists, virtually all music. I’m not eager to listen to podcasts as my children do, or even books on tape or Audible or whatever, which for me are better for road trips. At least as long as my eyes still work. And road trips aren’t happening right now. The rhythms in my ears, the lyrics, the memories, the exposure to new sounds and old ones I missed along the way, generate energy that keeps me moving, both physically and mentally. With so little social contact during these past months, I am talking mostly with myself. And with Michael.

I can’t remember the first day I started writing Michael letters after he died in May, 2017. From the beginning of our friendship in 1971, I had never experienced such a level of intimacy and trust with anyone, the kind that makes you feel you can say anything without ever being judged. What a marvelous gift which I took full advantage of, during those early months of getting to know each other. When I went to Europe for a couple of months in early 1972, I already knew that we needed to risk all that wonder by taking this mind-melding up a notch to the romantic. After telling him that during a phone call the night before I left, I poured myself into writing him letters the whole time I was gone. When I returned and moved in with him almost immediately, the flame was lit and burned for the rest of our life together. All these post-death letters, which now number in the hundreds, feel like they belong in a book, the title of which is “P.S. I Forgot to Tell You Something.In this quiet time, when I’m mostly with myself it’s become pretty clear that I’m still really with him. I feel him around me while I do the chores which were once his, while I lament the political state of this country, while I listen to the music, when I enter the sanctuary of our bedroom at night. I still need to talk with him. Instead of experiencing a lessening of my emotions toward him, they’re getting stronger. When I feel down or rattled, the essence of us, which I have no idea how to describe, surges up from somewhere in my gut and keeps me going. For the kids, he would say. You have to stay ok for our kids.

So here I am, muddling through all this, often likening my interior to that time when we stood at JFK’s gravesite, remarking on the eternal flame. Apparently that was a metaphor for us. Maybe that’s why concluding the cancer story has been so hard for me. How do I write about the end which exists on one plane, when it so totally doesn’t in the reality I now occupy?

I was out in the garden a few days ago when this song by Aztec Camera, “Still on Fire,” popped up. Immediately I was taken back to the mid 1980’s when it was released. Michael added it to his house favorites CD collection. We’d been together for years, had one kid and would soon have two. As they grew up, we all listened to that collection of dozens of songs and all of us really liked that one. For Michael and me, the title said it all. And here I am, on my own, still on fire. How lucky and unlucky.

Cancer: The Stealth Assassin Unveiled – Part 1 – Chapter 12 – Be 278

“When pale January lay, In its cradle, day by day, Dead or living, hard to say;” Alfred Austin

January, 2017. I begin the year with exhaustion and foreboding. The whole family is undone by Trump’s election which feels more like a Twilight Zone episode than real life. Our son has accepted a two year postdoc in Guam on the other side of the world. Our daughter is juggling her family, her job and her rage about the election. She is heading off to the women’s march the day after the inauguration. I am feeling out of gas and so much older. My knees are killing me. But mostly, I’m frantic with worry about Michael. His appetite is disappearing. He’s not drinking enough. I make him get a blood test which comes back normal except for his kidney function. I try to keep from nagging him but I can’t stop myself. He isn’t making sense to me. He exercises, wears himself out and doesn’t replenish himself. I bring out the Boost or Ensure which he detests, but he drinks enough of it to shut me up. He’s looking thin and old. He hasn’t had any treatment in over a year. I drive myself crazy wondering if his thyroid is out of control or if his cancer is returning. I feel isolated, lonely and afraid.

Our bird guy has been at a conference in New Orleans and is coming into Chicago on January 8th. We decide to make a weekend of it before picking him up at the airport. Friends are having somewhat of a reunion which will include watching the great rock film “The Last Waltz” on Saturday night. We plan on going to our favorite Greek restaurant in the city on Friday, stay at a downtown hotel and take in a museum on Saturday before joining our friends. When we get to the restaurant, I’m excited about eating my favorite dishes but Michael says he’s not hungry and can’t find a thing that looks appetizing on the menu. I am frustrated, bewildered and guilty as I’m enjoying my meal while he pushes gyros around on his plate. We head to our hotel and I can tell Michael is sorry that he’s agitating me. We settle into our room and re-establish our better selves. We make love that night and fall asleep quickly. When I wake in the morning, Michael is still out cold. I wait while time ticks by and after 13 hours, I finally wake him. My nerves are jangling but we push on.

We head off to the Field Museum which is his favorite and wander around for a few hours. He eats a small lunch and I try clamping my mouth shut about food. Eventually we move on to our friends’ home to watch the movie and socialize with people who haven’t seen us in awhile. As the evening goes on, Michael is virtually silent. There’s a big spread of Middle Eastern food but he doesn’t touch it. When I ask him why he isn’t eating, he says he doesn’t like that kind of stuff. My oldest friend comes up to me and worriedly asks why he isn’t eating. Eventually he picks at some fruit. I move grimly forward, while my insides quake with anxiety. The next day, we meet some of my family members for brunch. Michael orders a child’s plate which so unnerves me that I can barely focus on conversation. We leave early with nowhere to go. The weather is freezing cold. Our kid’s plane isn’t due for hours. I suggest we go driving through the neighborhood where he grew up to see if he perks up a bit. That works for a short time. We wind up at a bookstore where he finds a table and lays his head down. Then suddenly he pops up and says he’s going to nap in the car. I sit, stunned, having no idea what’s happening. Is this a reckoning for him after all the years of stress? Or is it cancer? I join him in the car and we go to the airport. My mind is whirling frantically but there’s nothing I can do right now.

We collect our son and decide to go to Michael’s favorite hamburger joint before going home. He consumes part of a burger and looks like he might pass out at the table. Despite the late hour and my not terrific night vision, I take the keys for the couple of hour drive back home. Michael is agitated about my potentially looking at my cell phone while driving but I shove it in my pocket and we silently drive silently. As the miles pass, I’m thinking he needs to be scanned immediately and figuring out how to push those tests up. When we arrive at home, the first thing Michael asks is where I’ve put my phone. I pull it from my pocket and he is instantly enraged. Always a hothead, this explosion is out of nowhere and we wind up putting distance between that night. My journal quote, “If I could, I’d get in my car, drive away and never come back.”

By mid-month, life feels utterly changed. Michael has for the most part, disappeared. He mostly sleeps. He goes out for short periods of exercise and comes back exhausted. I think he’s starving and dehydrated. He’s mostly silent or monosyllabic. He’s stopped doing most of his projects. His short term memory is terrible. I’m trying to understand him. I’m thinking brain tumor or Merkel cell all through his digestive tract. His affect is totally flat and he’s irritated by my prodding. In our forty five years together, we pull closer when problems arise. But not now. He’s lost a lot of weight. He had more blood tests which show nothing. We met with our radiation oncologist, he diagnosed cachexia, a starving issue that happens with cancer patients in treatment. He prescribes appetite stimulants and anti-depressants. By the time we get home, I know that diagnosis is wrong. Michael isn’t in treatment. I call our oncologist who orders a battery of basically every hormone in the body. She’s also ordered a scan in a few days.

Women’s March, January 21st, 2017

Meanwhile, I’m keeping track of the peculiar things Michael’s been saying or doing. I asked him to go to the movies with me – he said nothing looked interesting. I went alone and when I returned he said he didn’t know where I’d gone. He’s been forgetting to take his vitamins and other supplements. He argues with me about whether he’s had his Boost. He accused me of buying an incorrect dosage of Vitamin D and said they might be poisoning him. In the evenings he pops out of his seat and starts preparing to go out. When I ask where he’s going, he says it’s time for his walk. His sense of time has vanished. We went as a family to the Women’s March, bringing a chair for me to accommodate my bad knees. He wound up using it. On the way home, he was driving. We’d promised our grandsons Dairy Queen as a treat but he drove right by it. When I reminded him, he said he thought we’d meant a different ice cream place. Later I was making mashed potatoes. He suggested I go out to the garden to get fresh chives. In the dead of winter? I am beyond terrified. I’m also numb, angry, short-tempered. Without our usual connection, I feel unmoored, like he’s already gone. But from what? I can’t wait for the scan although I’m petrified. Out of the blue, he tells me he’s going into school to teach a full day in a colleague’s classroom, his holocaust unit. I can’t imagine him having the energy to get through it but I sleep in another room to make sure he gets a full night’s sleep before doing this herculean thing. At the end of the day, he drags himself home and collapses. I’m wondering if he was able to be coherent.

January 24th, 2017

What am I living? How did this darkness descend so quickly? Michael is like a zombie. He barely eats or drinks. He showers and looks his computer, but nothing else. Today I coaxed him into going to the grocery store with me, hoping he’d find something tempting to eat. He was slow and confused and couldn’t seem to remember what he was doing.”

January 25th, 2017

“I just looked at Michael’s hormonal blood work. Except for slightly lower testosterone, there’s nothing abnormal. I’n resigning myself to cancer. Today was his scan. He said that waiting for the dye to move through his body was uncomfortable and that he laid on the floor in the prep room. I try imagining what the nurses were thinking. He came home looking drained and passed out immediately. His last comment to me was that he wondered if he would ever have another day when he felt good. All he’s ingested today is one Boost – 360 calories. I feel so alone. He’s not gone yet but the past few weeks have felt so dreadful I wonder if I’m in a place from which I can never return.”

On January 27th, Michael starts taking an anti-depressant which acts as an appetite stimulant in older people. We head to the doctor’s office for scan results. They are NED, negative for disease. I am beside myself. The man I’m living with is not my life partner. The doctor orders an endoscopy. Michael is angry with me because I’m being negative and aggressive. I’m angry too. His passivity versus my aggressiveness is an old story. He is slow while I’m fast. When the issues are small that’s not been a terrible thing. But now it’s a disaster which is creating distance between us. I don’t care what the scans say. Something is terribly wrong and the doctors are missing it. He’s tired of my nagging. I’m tired of doing it. But he’s lost 14 pounds in six weeks. He goes away from me to sleep for hours. My energy is almost non-existent. Trying to drag him out of his silent rabbit hole feel too big for me. I feel like I’m already in mourning.

On January 30th, we are having another day of friction. I’ve been researching and am positive there’s something wrong with Michael’s brain. I waver between frustration, anger and guilt. I don’t want to frighten or upset him because he’s lost all perspective. He wants me to be quiet. By evening, we are in total silence. He departs for our bedroom while I stay downstairs. Thinking. I feel terrible. I believe he’s sick and I want to be kind and loving, not angry. So I go upstairs to find him sitting on the edge of the bed. I put my arms around him and apologize for my behavior, stating that I’m only trying to take care of him. I kiss him, tell him I love him and suggest that he go to sleep. I go back downstairs to watch the Rachel Maddow show to catch up on the outrageous news about Trump’s Muslim ban which is being protested at airports all over the country. Suddenly, Michael is standing in the doorway of the living room. He looks at me and tells me he’s feeling confused. He asks, “did you just tell me you’re leaving me?” I replied, “of course not,” whereupon he burst into tears. I pulled him toward me to comfort him and said he should drink an Ensure because he’s eaten so little, and that we should watch the news together which is what we’ve always done. I got the drink, we snuggled together on the couch and I resumed the paused program. After a few drinks, he looked at the screen and said, “what’s going on there?” I told him these were protests against the Muslim ban. He said wonderingly, “what’s a Muslim ban?” I explained while having an internal meltdown. My history-teaching husband whose awareness of current events is as natural as breathing doesn’t remember this big story ? I didn’t react but this shoved me over the edge. That night when we went to sleep, I was resolved that I was getting Michael into the emergency room the next day to get a brain MRI. I was done with whatever this process was that was producing no results that made any sense to me. The next morning, I called our oncologist and spoke to her nurse, telling her that Michael was disappearing and that I was taking him to the ER for testing. She agreed, but I remember her saying that we’d never get a brain MRI there. I replied, “watch me.”

TO BE CONTINUED…

Stretch Your Arms Out

Sometimes, just contemplating the vastness of the world as we know it is just too big. Add in the universe, and the little we truly know of it, and feeling overwhelmed is not only a justifiable emotion but an expected one. I know that some people never give the vastness of it all a moment’s thought. Lucky them. Then there are the rest of us to whom considering the magnitude of what’s going on out there can elicit responses ranging from mild concern to catatonia. I’d categorize myself in the frenzied thoughts crowd.

When Michael and I had been together for a few years in the early ‘70’s, he started calling me his little existential soulmate. I spent lots of time thinking about the meaning of life, the meaning of death, the meaning of everything, analyzing, turning things inside out and outside in, upside down. He was of a different bent, able to distance himself from the overarching big questions that I wrangled with regularly. He would always look at me and slowly intone his mantra, “ Mellow, mellow.” He was perfect for me, so relaxed that being near him was practically sedating. At least temporarily. I used to tell him that I wished he had a zipper in his chest that I could pull down so I could climb into his actual physical space, if only for a little while.

For the almost ten years we lived together before we had kids, my busy, questioning brain wasn’t much of a big deal. But then we had offspring number one, our daughter, who from an early age, was occupied not only by the meaning of life questions, but a skepticism that bordered on nihilism. Having a kid like that changed everything for me. I no longer felt like I could just indulge myself in this heavy thinking. I needed strategies. I wanted my girl to enjoy her life, to not worry all the time, to find joy instead of blasting through all the iconic moments of childhood when she was still so little. Like her asking me with a stern face, “ I want to know if there’s really a tooth fairy and you can’t lie.” “Santa Claus is a cartoon character – how can there be so many of them all over the place at the same time?” No illusions for this girl. And that was just the beginning.

My daughter was a most desired and welcomed baby. In addition to us, her doting parents, my sister and parents played a big role in her life from the minute she was born. Everyone was taken with this bright, engaged imp, but my dad was putty in her aggressive little hands. She was just months old when he was confronted by his mortality; a serious heart issue threatened his life after his having undergone five coronary bypasses only three years earlier. He was scared, angry and adamant that he wasn’t going to have another big surgery after the failure of the last one. I brought my little one to see him in the hospital. When we stepped around the curtain which divided him from his roommate, my daughter began shrieking with recognition and excitement. An astonishing performance from someone so tiny. My dad cried and immediately announced he’d changed his mind and was going ahead with treatment. We were all grateful.

Seven years later, dad had been diagnosed with metastatic bladder cancer and was slipping toward the end of his life. My parents had moved to our town a few years earlier so my kids were really intimate with them. Explaining his illness and treatment failure to my son who was under three was really difficult. That was not the case with my daughter who seemed to have a secure grasp on what was happening. She was unafraid and remained affectionate and loving to him, climbing carefully on his lap to avoid hurting him. I’ll never forget him embracing her and remembering from his deeply diminished state, the beautiful words from the Robert Munsch book, “love you forever, like you for always, as long as I’m living, my baby you’ll be,” as they snuggled together. On his birthday, barely two months before his death, we had what we knew would be his last birthday party. He stood alone for a moment, tears streaking his cheeks. My girl walked up to him and wrapped her arms around him and asked why he was crying. He told her he was terribly sad about dying and that he would miss everyone so much. She replied, “Well, you’re still alive and right here, right now, so let’s try to have the best time.” That was a stunning and unforgettable moment I never forgot.

Dad’s last birthday August 1st, 1989

So here we were with this bright, intuitive, direct little girl starting to question the meaning of life following the death of her beloved grandpa. And that’s the time you really begin to stretch yourself, both as a person and a parent. Not just to be helpful to your kid but to answer your own questions, to find substantive ways to make sense of a world that’s often dark and ugly. A place where despite doing your best, there’s so much challenge and disappointment. To make life meaningful.

The advantage to having your first child at thirty is that I had plenty of time to muddle through my own big questions to formulate some ideas that worked for me and that hopefully, might make sense to them. As my kids grew, I was able to formulate these cogent little maxims that I could share with them, things I could repeat over and over ad nauseam that might help them through the tough times. I can just hear them right now, saying, “I know, I know, I’ve heard you tell me this a thousand times.” Actually that would be correct. But I’m still saying the same things to myself as life’s process is exactly that – a mutable, morphing thing that requires the application of a skill set that makes it work for, rather than against you. I may have referred to them in other blogs but they’re worth repeating. And there’s one that I haven’t written before.

First, I believe that if you choose to do something, do it because you want to, not because you expect anything in return. That payback stuff should come from inside yourself, not from the outside world. Next, there’s the five year rule which means that when you’re feeling your worst, try remembering what you were feeling exactly five years ago. It’s pretty much impossible. As this moment will be hard to remember five years from now. Perspective is everything. One of my most favorite core precepts is this one – the people with the best lives are the people with the best coping skills. Life is always presenting situations which require coping, essentially on a constant basis. No skills, tougher life.

Angel of Marye’s Heights

Chronologically, my last theorem may be the most important one. I was in my 40’s when it dawned on me. Our family was on a trip that took us to Fredericksburg, Virginia, site of a bloody battle in 1862 when the Union Army assaulted an impregnable position on an elevated position called Marye’s Heights. Wave after wave of infantry were sent up the hill where they were mowed down by Confederate soldiers dug in behind stone walls above the embankment. When night came, the freezing field was filled with the bodies of the dead and wounded who were crying out for water. A Confederate sergeant was so moved by their cries that he, Richard Kirkland, with filled canteens and carrying a white flag, made multiple trips down the hillside, ministering to soldiers from both sides, risking being shot by everyone. The story was unforgettable and I took a photo of the statue which was surrounded by shrubs which were a natural barrier between the statue and the visiting public.

Lincoln the Lawyer statue by Lorado Taft.

When I returned home, I thought a lot about the difference one person can make, in the smallest way or the biggest, often at just a random moment. At the time, I was serving on my park district’s citizens’ advisory committee. A local park had a beautiful statue of a young Abraham Lincoln which was currently away being cleaned from the multiple acts of vandalism perpetrated by high school students who gathered around it on their lunch hours or after class to smoke or fool around as kids do. During our committee meeting, I brought out my photo from Fredericksburg and suggested that after the statue was returned, perhaps plants could be placed around it to create a natural barrier like the one in Virginia. The park commissioners agreed, the statue came back and the plants were put in the ground. Since that time, many years ago, there hasn’t been a single mark on that statue. Whenever I pass by I always think I’ve left one positive civic mark on my community which will last forever, whenever that may be.

Michael stretching out on our last big trip to Utah’s National Parks in October, 2016.

Which leads me to that last piece of advice I told my kids and which I still tell myself regularly. Stretch your arms out and turn in a circle. Whatever you can touch is something you can change, fix, help. The big stuff feels unmanageable, too complicated, too difficult. But what’s within your grasp is different. A lot of small efforts make you feel like you’re doing something positive to impact the world. They kind of kick existential thoughts to the curb. And what a relief that is in the hardest times. I think this idea has helped center my kids. I know it works for me.

I put on my red fist growing like a flower shirt this week to remind myself that it’s still my job to resist the madness of the political nightmare in this country. I voted in person – forget that mail-in ballot. I got my flu shot. I bought extra sandwiches so when the increasing number of unfortunate people ask me for money when I’m out and about, I can give them something healthy. I made friends with a woman who admired my garden. In an incredibly dry spell, I watered my plants and filled my birdbaths to make sure that all my critters survive. I pulled weeds. I read books and listened to music. I’ve reached out to friends who are going through hard times. I went to my Zoom classes, started Spanish classes online and brushed the dog. I took my grandson for a drive through for dinner and answered a million of his questions. All together, not bad for living in this dystopian universe which will end one day or not. It’s the best I can do for now and taken as a whole, keeps the darker thoughts at bay. You have to work at it, bit by bit. So far, it’s working for me. One foot in front of the other.

Septuagenarian

Almost seven decades in the books. Then I will become a septuagenarian. I wish I could reach back into my mind to know what I was thinking as I was paging through that book on the lawn in Sioux City, Iowa. As sharp as my memory is, I can’t get back there. Maybe one day there’ll be technology that allows us to access everything that’s happened in our consciousness, but like flying cars that’s still a ways down the road.

My dad never got to age 70. He used to talk all the time about how if you made it to that benchmark year, you could cruise along for a long time. Of course that’s what he thought. His father died at age 39 from congestive heart failure when he was only eight years old. His mother died when he was 29, she at the early age of 52, from the sepsis caused by a burst appendix. There’s no way of knowing how long she might’ve lived, absent that medical accident. My paternal aunt lived to be at least 90, from what I was told. My mother didn’t like her so she drifted away into a distant life. And as for mom.

She lived to be a nonagenarian, a person who lived into her 90’s, a stunning accomplishment for a woman who had both multiple chronic physical problems, a couple of cancers, diabetes, and numerous nickel and dime issues which eventually made her despise doctor’s appointments. Up until her late 80’s, she remained intellectually sharp, but her unresolved emotional issues which kept her more of a dreamer than her life experiences would have led one to imagine, didn’t exactly set a positive standard for how to accept the aging process. She either ignored her increasing physical limitations which usually led to more problems, or spent time bemoaning all the things she wished she could still do without putting in the physical labor to make more of those possible. So except for hoping that my mental faculties stay as strong as hers, I’m not wanting to wind up annoying my family in the way her unattainable dreams annoyed me. I think I’m more like her mother who was a sturdy peasant who had fewer physical problems and was pretty tough.

So here I am, taking a break from spreading mulch, headphones in my years, squeezing as much outside time into my life as I can before winter comes and I become a prisoner of the unrelenting coronavirus. On the cusp of this new decade, I’m trying to understand the best way to live whatever life is left for me. I can’t imagine the future right now. The daily angst over the politics in this country consumes a lot of my mental space. Every day there’s a new unbelievable story. I alternate between rage and terror, mostly rage. I spend a fair amount of time worrying about my kids, my grandchildren and their futures, wondering what this planet will be like if there’s no unified approach to climate change. If there are 4 more years of the Trump administration, I imagine a nightmare scenario of social progress dissolution and natural resources destruction that is unparalleled. When I’m at my most anxious, late at night, I find ways to distract myself so I can sleep. The other day, I started working my way through all the characters in Game of Thrones, family by family. When I was younger, fantasy was not high on my list of books or television shows. I was more likely to be watching the history channel or Trauma – Life in the ER. Dragons are a more attractive option these days.

The past 6 months of singular isolation have definitely altered the trajectory of what I had in mind for myself as priorities after Michael’s death. I wanted to write an autobiographical collection of stories for my family. I’ve gotten to my junior year in college in that project. I was also determined to write about the orphan cancer experience Michael and I went through for five years. That’s been much harder than I thought. As I plowed through all my journals written during that time, I’d get exhausted by the power of every intense moment, and would sit paralyzed as if it all was still happening. Which it sort of is. I’ve managed to get through Chapter 11 of that book which takes me to the proverbial beginning of the end – only 5 months left in his life and certainly among the most harrowing of them all. I know I’m going to finish that. Then there would be travel but that’s all a far-off dream at this point. I still have a to-do list that grows daily, but my desperation to stay outside has done some serious damage to the pace of accomplishment with those goals. Still, I’ve become a bit of a philosopher in that backyard and ponder the life out there as it relates to us scrambled humans.

In recent days, I’ve been forced to acknowledge the familiar signs of fall, the lime green hydrangea turning an ombre/pink while the pampas and zebra grasses develop their plumes. I do enjoy watching the sparrows land on them, swaying up and down as they nibble seeds buried in the fuzz. But I’m also coming to terms with the fact that the butterflies that I wait for anxiously in summer are mostly departed. I haven’t photographed any swallowtails in weeks. The painted ladies are gone as are the red spotted purples. I still see an occasional monarch straggler, along with plenty of painted ladies, cabbage whites and yellow sulphurs. One day soon they’ll all disappear.

All summer I’ve watched the behavior of these different species who’ve frequented the plants I’ve selected for their needs. Although I understand the pitfalls of anthropomorphism, it’s hard to not attribute some very human characteristics to them. Territoriality is real amongst these delicate creatures. Monarchs can be very aggressive with each other and towards other species. They almost always win their chosen flower, acceding power only to good-sized bees. The eastern tiger swallowtail is more docile and willing to share space within its breed. Painted ladies move as fast as hummingbirds and dart away quickly if they’re approached directly. The hummingbird bumps the zebra swallowtail off its desired blossom.

Pecking order. My garden is as socially stratified as the human world. To me, these power plays are as recognizable as all the human ones played out in societies everywhere, the disparities between the haves and the have-nots, the powerful, the less powerful and the powerless. Is it all about natural selection or survival of the fittest? Is hierarchy inevitable? Is my backyard just a microcosm of Darwinian principles? I guess this is what happens when you have a lot of time on your hands, staying outside as long as weather permits and pondering the connections between the drama of nature and its relationship with the bigger picture. I think about a lot of unanswerable questions. Certainly the nature picture is a prettier one than what goes on in the world at large where we ratchet everything up with the complexity of people. I guess I feel so helpless about so many out of control issues right now that all I can control is this environment I’ve developed around me.

Two male cowbirds vying for a female.
Pumpkin and Carmine, the primary cardinal mates.

I invite birds here by providing food and water. Insects appreciate my offerings too. These creatures exhibit the same dynamics as the butterflies. There’s a lot of pushing and jostling that goes on in the scramble for sustenance. For sex, too. I’ve seen male birds doing their display, albeit not as fabulously as exotic tropical birds. My son tells me that there’s a thing called mate guarding which essentially is a way of the male protecting its future progeny. Pretty functional and dull. But after endless hours of observing the behavior of Pumpkin and Carmine, my resident cardinals, I’d become fully convinced that they’re life partners. Hence, it’s not a stretch for me to have projected that they’re the avian version of me and Michael, mated for life and deeply engaged in raising their family. Go ahead and scoff and think that isolation has finally undone me. The thing is, I’m a good observer. These two are never far from each other. I saw them being frantic parents when their fledgling was threatened by a cat. I can identify them by their calls. So I looked it up.


By early spring, male cardinals have aggressively claimed their territories and will court and mate with a chosen female. Cardinals are predominately monogamous and will mate for life.” (Northern Cardinal, psu.edu.)

Pumpkin and Carmine on my backyard climbing structure.

These two spend a lot of their days near each other. Even more interesting to me is the fact that despite most adult birds ultimately shoo away their offspring to protect their own territory, Pumpkin has been hanging around with one of her kids. I’ve found this interesting and humorous as she often feeds her baby who is now significantly larger than her. I can relate.

But as with daily life in the human world, where life is packed with unexpected surprises that can turn our “normal” on its head, my cardinals’ universe is fraught with peril. All this bounty that I’m supplying for my butterflies, birds and beneficial pollinators has been a good thing, but there are opportunists who are also enjoying the treats, some of which includes my beloved invited guests. Recently, I’ve had an influx of rabbits, squirrels, possums and mice who’ve gobbled their way through my apples, pears, basil and of course, tomatoes. I really hate the stray cats who park themselves near my bird feeders, hoping to get lucky.

Even more disturbing are the nasty birds like the big, beautiful bluejays, the bullies of the backyard. And scarier are the Cooper’s hawks and the red-tailed hawks who are showing up here frequently, mostly looking for lunch or a mid-afternoon snack.

I try shooing them away, even though I admire their magnificence and fully understand the way things work in the world, where the strong survive and the weak are crushed. All I want is for my cardinals to be ok. So you can imagine my shock the other morning when Pumpkin emerged from the bushes for her a.m. bath, absent her beautiful fiery orange-red tail. Gone. Poof.

First I was terrified and devastated. Then I composed myself and started looking for an explanation. I discovered something I’d never heard of before – a fright or a stress molt, when a cardinal, threatened by a predator, loses all its tail feathers at once, apparently an escape adaptation. Something had threatened Pumpkin. Off with her tail. She can still fly. If all goes well, her feathers will grow back in 4-6 weeks. I’ve seen her every day since that first shocking moment, both alone and with Carmine and her unnamed baby. I’m hoping this incredible bird with her unusual creamy color survives her fright or her attack and live here for another couple of years.

But this was a sobering reminder of the fragility of daily life. I’ve been knowing this for many years. I’ve had more than my share of losses. With the stress of this Covid time, when the wrong choice can kill you, when we’re living in a country in which the elected leader is attempting to become a dictator, it’s the little things that give you a jolt into staying alert, into keeping up the good fight. Because life as you know it is an ephemeral thing and keeping it real while you’re in it is your job, your right and your privilege. From the little to the huge. That’s how I see it today. Michael would definitely agree with me.

Well, I Never…

A lot goes through your mind when you spend most of your time alone. I’d say I’ve seen other people for maybe three and a half hours total in the last 10 days. There was another potential Covid exposure in my daughter’s family which meant tests and quarantine again. Basically I live outside during the day. I work in the garden. I exercise. I listen to music all day. Occasionally I speak on the phone to a friend or my sister. I play lots of Words with Friends games online. I read books. And I think.

I’m often angry. Mostly about the political situation in this country, the terrible management of the coronavirus, the fractured condition of the society wrapped around me. I’m terrified about climate change which is escalating and wreaking havoc everywhere. I’m not sure I’ve ever felt such a long oppressive time with little relief in sight and the potential for a further downward slide. To top things off, my aged dog appears to be heading toward the end of her life. She’s not much of a companion as her first eight years were spent as a show dog which I glean was far from the life of a beloved pet. Never an affectionate animal, she’s warmed up during the last three years and is at least present. Having her go will be another challenge in this peculiar life.

The other day my sister asked me if I remembered the name of a French woman in literature who sat and knitted as her country contorted in revolution. I said, “you mean, Madame DeFarge? From A Tale of Two Cities? ‘It was the best of times, it was the worst of times?’” I surprised myself. I think I read that book in eighth grade. Maybe in the first year or two of high school. In any case, it’s filed in the literary reservoir in my brain. A few years ago, I took a creative writing class in the lifelong learners program for people over fifty. It’s a nice resource in my community called Olli. The instructor in that class began one day by reading 10 sentences which were the first ones in 10 different novels. I was able to identify all of the books. I guess that’s what it means for an author to have the gift of engaging a reader from the first page until the end. These books were all part of what I’d call the “necessary library,” at least for me. The point was to teach us how to do that. Out in the yard, kicking away in my pool, I got stuck on a beginning for the blog I wanted to write. I was having an internal conversation with myself, a pretty snarky one that had to do with my annoyance at a lot of comments people make to me about my life, my widowed life, that is. I get especially annoyed at the comments of people who are still married, who have no clue what it’s like to be without a partner, yet wax eloquent about how I should feel.

Maybe they believe charts like these, that there’s some orderly progression for widows. And maybe that’s true for some people. But not for me. While I was stewing away about this, what came to mind was me responding to some platitude with the preface to my remark being , “well, I never!” as in well, I never would have thought of that,” delivered in a tone dripping with caustic juice. I looked up the etymology of the phrase and found that it dated back to the 1830’s but I’m pretty sure I heard it in a movie or movies.

Their first quotation of “Well, I never” is from 1836 but I found an earlier one from December 29, 1832 in a short story called “Quite Beyond Belief” by Mrs. George Crookshank published in The Maids, Wives, and Widows’ Penny Magazine, and Gazette of Fashion(No. 10, Vol. I).

In any case, it works for me right now. So, here we go. Well, I never want to be the person who assumes that my perspective is suitable for projecting onto someone who’s making a statement about how s/he feels. I’m tired of being told that even though my best friend and love of my life is dead and that fact remains a central ache in my life, that I still have my memories. Or my children and grandchildren. Or my energy. Or my intellect. Or anything else. They’re not what I want. I want him. I don’t get him and I can’t have him. But that’s how it is. I didn’t ask anyone for a solution to my pain. I just have it. Is that too hard to understand? I don’t want to erase anyone’s feelings the way I feel mine are erased. I hope I can smack myself in the head first, before I do that to anyone else. I like the groove of this, well I never. So here I go.

Well, I never knew I’d find insects other than butterflies so interesting, especially the stinging ones. The blue-black mud dauber wasp absolutely adores the thyme in the garden. I walk among them and haven’t been stung once. They’re also good swimmers. I’ve fished several out of my little kiddie pool. And the bees. Back in the day, I was afraid of them and any other bug I couldn’t outrun. I’ll admit to jumping up and leaving my infant daughter on her blanket when a couple got to close to me. Now I’m worried about them and I’ve deliberately planted native species that they’re attracted to – recently one was so loaded with pollen, it weaved drunkenly in the flower petals unable to get aloft because of the weight of its gluttony. The weather here has been dry – watching them gingerly perch on the edge of the birdbath to drink interests me rather than frightens me.

Well, I never knew I’d be doing my scientific studies. When I was a kid, my goofy dad always used to ask us if we’d done our scientific studies at school. I liked science okay but I was more a reading-history type of student. I’ve been taking pictures of butterflies for years but now I’m applying the study of phenology to them, keeping track of when each species arrives and when they depart, and comparing that cycle from season to season, tracking the effects of climate change.

Well I never knew I’d be harvesting swamp milkweed seeds and getting ready to dry them and the gorgeous tithonia seeds which draw so many monarchs, painted ladies and hummingbirds. I’m getting in deeper with all this life around me, thinking about how to conserve more and waste less. I’m not reading books about how to do any of it. I’m just feeling my way along which makes things more fun. I’m sure I’ll fail at a lot of what I try but I don’t care.

Well I never thought I’d get as deeply involved with the yardbirds as I am now. My son, who is a bird biologist, paid me the ultimate compliment – telling me I’d created an incredible habitat for these magical winged creatures. So far the bird list I’m compiling has over 50 species who’ve visited and many who’ve set up shop. I love them, the hummers who are too fast to get any good photos, the house wrens, the catbirds and most of all, my resident cardinal pair, Pumpkin the gorgeous mutant creamy-chested female and Carmine the male. I’ve committed the ultimate amateur wild animal sin – named animals that will ultimately disappear and break my heart. They’ve been here for a few years already and their lifespans are brief. But I can’t help myself. They’re always together, I’ve seen them make babies and even rescued one from a prowling cat. And the fact is, they remind me of Michael and me. Pitiful but true.

Well, I never would just sit out there and only think about the birds and the bees and the flowers. I mean, I’m in a pandemic with no end in sight. I’ve already had a couple of Covid tests which were painless, fast and resulted quickly. I have no idea what the future will be. I’ve just spent years trying to figure out how to live in the present. So what’s the future? Right now and for at least a year, I think this is the future. Except soon it’ll be colder.

Well I never thought I’d start pricing outdoor space heaters. I was getting serious until I started realizing I wasn’t turning my yard into a year round cafe. Hunting for an outside heater is just a reflection of my anticipatory winter claustrophobia. I’ve always been able to get out in the cold times. The risk/reward equation isn’t looking too terrific to me right now. I’m not eating in restaurants and I’m not going to movie theaters. I’m not going to the pool or a gym. Being inside with too many people is too germy. What am I gonna do without my yard? I’ll still have birds but that’s about it.

Well, I never thought I’d have the time to go back and think about about a bunch of essentially irrelevant stuff but now I have time to burn. I’ve been thinking about how many song lyrics I have stored in my head from childhood lullabies to new tunes I’ve been picking up by listening to a lot of new artists and bands . I’m very proud of myself when the first note of a song by one of the recently discovered groups is instantly identifiable. I always wanted to continue growing my music repertoire. So then come lists – works in progress.

Favorite guitarists
Jeff Beck, Eric Clapton, Sonny Landreth, Derek Trucks, Leo Kottke, William Ackerman, Carlos Santana, Robert Randolph, Dickie Betts, Buddy Guy, Stevie Ray Vaughan, Neil Young, Duane Allman, George Harrison, BB King, Jimmy Paige
….

Best concerts
Robert Palmer – Quiet Knight
Paul McCartney – Indiana
Grateful Dead – Fox Theater, St Louis
Rolling Stones – Soldier Field
Keith Jarrett – Orchestra Hall

I’m still working on those lists. I’ll probably change my mind lots of times.

Well I never thought I’d be writing about every house I’d lived in, my favorite and most hilarious experiences, my top sexual moments. I’m time-traveling as I kick away in my little pool. Maybe when I’m all done, I’ll burn it all. I really can’t say right now. I didn’t anticipate doing any of this six months ago. Life is full of surprises and I’m going where my instincts lead me. Well I never will be something else before I know it.

Gone to Look for America

When I woke up this morning, I immediately recalled that it was 9/11. I still remember that morning nineteen years ago. Michael had already left for school. My daughter was away at college, attending a volleyball retreat for her team in advance of the fall season, at a lodge somewhere in the wilds of Wisconsin. I was scrambling around, trying to get ready for work while attempting to motivate my glacially slow son to get himself together so I could get him to school on time. I was listening to the Today Show in the background as I scurried around, in that time before Matt Lauer was outed as a misogynistic wretch. I set breakfast on the table before my kid and ran off for a quick shower. A few minutes later, there was a knock on the bathroom door. My son hollered out that a plane had flown into the World Trade Center. I yelled back that it was probably an attack by Osama bin Laden and that he should finish eating. I just knew it wasn’t an accident. When I got dressed and came out my son said he was afraid and wanted to stay home for the day. I told him we couldn’t change our habits because of potential terrorism and drove him off to school. Once at the office, I along with my coworkers sat glued to a small television set, watching the impossible unfold for hours. My daughter and my husband, away from news both called for details. This was one of those moments you never forget, like the Kennedy assassinations, the King assassination, the Malcolm X assassination. The Challenger explosion on live tv.

The first song I heard today was Simon and Garfunkel’s Gone to Look for America. As soon as it began, I started to cry. I wasn’t prepared to be weeping in my car. Maybe it happened partly because of this endless Covid isolation. I’m certainly feeling the effects of these past six months, so many hours alone, with no real end in sight. But it’s also the message of the song and its relevance to me after these 53 years. I was sixteen when that song came out and in today’s parlance, getting woke. I was thinking about civil rights and the Vietnam War. I was trying to understand that you could be a patriot and a critic of your government at the same time. The lyrics of that song spoke to me because I knew that even though I was a little younger than Paul Simon, he was evoking the obvious disconnect between what we were told was America versus what it really was.

A year later, I was off to college and swept into the counterculture movement with a strong political bent. I read a lot and got over any doubts I had about the validity of being a patriotic dissenter. Women’s rights and the environment were added to my ever-burgeoning recognition of everything I thought needed fixing in this country. That place in time wasn’t a temporary state for me, something I outgrew when I left school. To this day, I don’t expect to ever have the government of my country reflect my political preferences. Those are the same as the ardently held views of my youth. But I’ve learned to navigate life without getting exactly what I want and can live with that. Mostly.

Fast forward to 2001. That was a big year for me. Michael had left his business of 27 years to switch careers, acquire a teaching degree and a Master’s in U.S. history to become a high school social studies teacher. Although we’d been living together for 29 years, we’d been married for 25 and took off for an anniversary cruise to the Caribbean in the beginning of May.

At the end of the month, I had my 50th birthday. That was followed by a trip to Washington, D.C., courtesy of my son’s second consecutive appearance in the National Spelling Bee. Our daughter joined us and we had a wonderful time watching our kid come in third while enjoying travel through historic sites in the Virginia/Maryland area. Life was challenging but rich and good.

The summer passed quickly and suddenly, it was that dark, terrifying September morning. As was typical of me during any time of crisis, I read and watched everything. As hard as it was and still is for me, I can’t look away. I don’t like surprises. I wasn’t a fan of the Bush/Cheney administration and it didn’t take long for the “war on terrorism” to begin taking on political tones that raised my ideological hackles. I’m not a hawk by nature and the hawks were certainly leading the charge with what later was exposed as false intelligence and a profound generalized anti-Muslim bent. I was no fan of terrorism but what I saw was going too far. The tragedy of 9/11 was muddied by those subsequent years of endless war and an aimlessness which still drags on nineteen years later.

Eventually the Bush years came to an end and the Obama election burst forth like a rush of fresh air. He brought hope and promise though I knew that the odds of sweeping change would be obstructed by the complexities of our glacial, lumbering legislative process. His presidency would certainly not be like sweeping a magic wand over all the pressing issues facing this country and having the world turn rosy. But there’s no doubt that after eight years of George Bush, life for someone of my ilk became infinitely more livable than it had been for a long time.

In Obamas second term, a lot had changed in my life. I’d retired from my job and become a caregiver for my firstborn grandson. I’d moved my aging mother into my home. Michael had gotten diagnosed with his rare Merkel cell carcinoma. I was incredibly busy. But never too busy to ignore politics. I was frustrated with the Republican Tea Party and their obstructionism. I thought Obama had become too centrist although I understood he was in a tough spot. In 2015, I experienced three significant deaths and thought Michael was ready to go. He made a comeback and our family had the opportunity to focus on what was shaping up to be a wild election in the fall of 2016. There was Hilary Clinton, not my personal choice for a candidate but at least and at last, finally, a woman candidate. The Republican field was huge and pathetic. I read my journal from 2016 recently and despite Michael’s remission being the center of my focus, the Trump candidacy and its absurdity make frequent appearances throughout the narrative. I well recall the night of November 8th, 2016.

We watched the returns as a family. The hours passed and although the popular vote was clearly a Clinton victory, the antiquated electoral college system bestowed the presidency on Trump. From my journal:

November 8th, 2016

“I sit numb. It appears that by morning, there will be President Trump. A racist, misogynistic crude buffoon who has never served a minute in public office. He will be our representative on the international stage. His presidency will unravel the progress of years. Our Supreme Court. My god. What will happen to women and blacks, latinos, muslims and jews? What will happen to the planet?

Our family ached that night and kept on aching. Within a few weeks, Trump was sworn in and Michael’s cancer was manifesting itself in bewildering, confused behavior. One night in late January, 2017, Trump had announced his Muslim ban. I was watching the news when Michael appeared, upset and disturbed. He came and sat beside me and asked what was going on. I told him there were demonstrations at airports about the ban and he innocently asked, “what’s a Muslim ban?” The beginning of his end and the beginning of the death spiral of democracy as I and millions of others knew it. Throughout the next several months, watching my beloved husband fail with my children in despair beside me, we were all unable to stop looking at our phones, watching each unbelievable bit of news flash before us. To this day, I have wondered what Michael’s decline and ultimate demise would have felt like absent Trump’s appalling tenure as president. After he died in May of 2017, Trump still loomed, every day, each one bringing jaw dropping news stories.

There are numerous ways of describing Trump’s presidency. In this year, what I hope will be his last in office,we have the addition of the pandemic which he has mishandled from the beginning of its presence. He has lied and dissembled, essentially making himself responsible for the illness and deaths of thousands of citizens. He admires the behavior of dictators and autocrats. I truly believe he has damaged every institution he has touched during his tenure and that democracy has bowed beneath the weight of his reckless, narcissistic behavior. I’ve thought of how time has made George Bush look so much better to me on a relative scale. It brought to mind a photo we took in D.C. back in 2001.

“The Heritage of the Past is the Seed That Brings Forth the Harvest of the Future.“ Indeed.

If Trump is defeated, I think I won’t live long enough for the repair and recovery of this country, flawed as it may have been before he trampled it with his arrogant disregard for the Constitution. I feel that a huge swath of the population is suffering severe emotional fatigue from his relentless assault on the basic tenets of our society. So here we are. On the nineteenth anniversary of 9/11, considered the worst assault on our nation in history.

Until now. As I listened to Simon and Garfunkel this morning, I realized I felt just as desolate as I did when I was a young girl, trying to find my way through the murk of our wounded culture, trying to make my way to the America of my ideals. So I wept in my car. And then wiped my eyes, gave myself a good shake and vowed to keep railing on, doing whatever I can to make sure this president gets ousted from his job in November. So that the generations coming behind me will not have to spend their lifetimes looking for America.

The Realities of Remission – Part 2 – Chapter 11 – Be 278

*This is a continuation of Chapter 11 – Be 278, my story of living through an orphan cancer with my husband who died in May, 2017. All previous chapters can be found on this site. They’re hard to write so there are time lapses between them. 

1306575C-037A-4A48-B7E4-051367966C75The beginning of 2016. After the ravages of 2015, the devolution of Michael’s health from his excellent status at the beginning of the year, to his rejection from a crucial clinical trial, to his coming close to death before receiving the immunological drug Keytruda off-trial, we are astonished that he is still breathing. Somewhere in the midst of the terror, my brother, my mother and my treasured dog died. A long intimate friendship between our family and another came apart. I haven’t had any real time to process all those events. I am intensely focused on Michael and anything I can unearth to keep him alive. The winter holidays were so unexpected. Michael met with many of his former students who were home visiting, on winter break from college. He had lunch with his school colleagues and arranged some guest teaching days. He was still suffering from the toothache that had been haunting him since the previous September. He’d been on antibiotics several times in an effort to avoid any invasive procedures. Our friend Peg came from Denver for a visit.  After a whirl of events, Michael, a master of understatement, said he didn’t feel 100% and collapsed with fatigue. We were expecting yet another visitor, our dear friend Brian from New Mexico. Six months earlier, Michael’s body was carrying a huge cancer load. How much is still cruising around inside of him is our daily question. Between scans, there’s plenty of time to bounce between hope and fear.

Our son was temporarily home, soon to be departing for his field work in Panama, a critical part of his biology Phd. Michael has made a wish list of things he’d like to see before he dies. Having our kid finish his doctorate is right at the top of it.
1C824376-5300-402D-BF95-9B735BF37A87I’m trying to practice living one day at a time. Shutting my brain down is hugely challenging for me. I’m constantly reading all the latest Merkel cell research, trying to stay current in case things quickly go south. I haven’t gotten over my bitterness about Michael having been denied access to the clinical trial in St. Louis, which was  testing a drug essentially quite like Keytruda. The Barnes principal investigator was disinterested in us and his nurse was absolutely cold and detached, telling Michael to go back home to get sicker and return another day. On the anniversary of that rejection, I finally wrote to that doctor and his supervisor, unleashing the hostility that had been eating away at me during the last painful year. Here are a couple of excerpts from that letter. The following year I looked up the trial and found that this doctor had disappeared as the principal investigator. I hope I had something to do with that.
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To add to our worries, Dr. Zhang, our second oncologist in a year, informs us that he will be departing our cancer clinic in the next couple of months. He recommends that we continue with his old friend and colleague, Dr. Zhao. We hear this news with a mixture of sadness, fear and trepidation. Zhang has proven to be smart, a positive collaborator and a risk-taker, an important combination for a patient dealing with a little understood disease.

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His help in getting Keytruda off-trial in 2015 was daring. I thought of him as kind of a medical gunslinger. More adjustments ahead for us. As a pre-emptive move, I dash off letters of inquiry to other principal investigators of Merkel cell clinical trials to see what’s possible in case we run into trouble. I can scarcely believe my audacity in reaching out to these people. I tell myself that as the saying goes, necessity is the mother of invention. We move forward to the next appointment, living as well as we can in the spaces between blood tests and scans.

E81AA7BA-12F4-4F76-9767-39A960B09C6AOn January 15th, 2016, Michael and I went to Dr. Zhang’s office to be greeted with the bad news that his latest blood work showed that all three of Michael’s liver enzymes were astronomically elevated and that there would be no Keytruda treatment that day. Instead he was placed on a big dose of steroids to try to reduce the liver inflammation. Two more blood tests were scheduled along with another meeting with Zhang at the end of the week. We were completely baffled. Michael was taking antibiotics and pain meds for his toothache. Why was the doctor’s assumption that it had to be the life-saving Keytruda that was the culprit for the liver flare, rather than the other meds or a synergistic relationship between all of them? All the positive feelings about Michael’s incredible rebound seemed to fizzle away. I was filled with questions. What was certain was that steroids suppress the immune system, allowing an opportunity for the cancer to reassert itself. A nerve wracking time, to say the least. Dr. Zhang is not available for the next appointment so we meet with his colleague and our next oncologist, Dr. Zhao. The liver enzymes improved but she is convinced that Keytruda is too dangerous to administer again. My immediate sense of her is that she is a strictly “between the lines” type of doctor, which I view as a problem.

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We move into a waiting period. On February 1st, Michael develops a cold and cough. What was once an average illness now carries the weight of a terrifying episode. Normal, whatever that was, has disappeared. Dr. Zhang orders a liver scan for mid-month. When Michael’s cold happily resolves, we hit the road to Chicago to just feel like we are taking advantage of the fact that despite all the uncertainty, we are still together, alive. The rhythm of our comfortability and love kick in and we shove away the fears for a few days.

Mid-February brings the liver scan. Tapered off the steroids, Michael’s his enzymes are almost normal but the scan shows a mild diffuse fatty liver. His primary doctor has weighed in with the opinion that a liver which has a hard time metabolizing drugs can mean anything is a problem. We meet for the last time with Dr. Zhang who is afraid administering more Keytruda will bring on liver failure. With the virtual certainty of cancer returning, we argue for a moderate approach – trying a half dose of the drug, monitoring carefully for enzyme problems and quickly restarting steroids if there is a flare. Zhang agrees to this, provided we wait for a month to let Michael’s body rest. We agree and prepare for another trip in our quickly devised retirement. Off we go to Puerto Vallarta, Mexico in the beginning of March.

For what seems like an eon, I’ve been feeling as if I’m living in the Mel Brooks film High Anxiety. The tension of the past year has been unrelenting. In addition to the tremendous pressure of Michael’s condition and treatment, I’ve been trying to pay attention to my own health. A visit to my doctor brings the news that thyroid nodules which she’s been monitoring in me have changed in size and now require a biopsy. As my mom had thyroid cancer, this feels unnerving to me. In addition, my knees are incredibly painful with intermittent swelling in both the front and backs of them. I think everything is cancer. I terrify myself trying to imagine that Michael and I are simultaneously sick and in need of treatment. That actually happened to my parents in 1989 when they were both diagnosed with cancer within five weeks of each other. All my childhood fears associated with my mother’s constant health problems are being exacerbated by our current situation. I am trying hard to push all the negative thoughts away so we can live in the moments we have, yanking every second of intimacy and comfort out of them. I cast money anxieties away too, knowing that this accelerated and brief retirement is likely all we’re going to have together. Stoically we board a United Airlines jet in Chicago and fly southwest in early March.

We’ve chosen the type of resort where relaxation is effortless. The place is beautiful as is our room. We intend to do nothing but stay in bed, make love, read, eat, sleep, swim and repeat the same every day. We throw in a little sightseeing but mostly this time is to restore our drained energy and forget all things medical. Michael has a sore shoulder from too much baseball and volleyball and his achy tooth. I have my bad knees. But the forgiving water helps. We lounge by the pool, ordering drinks and lunch. I lie in the water, staring up at the frigate birds which cruise overhead. Michael reads and dozes. He looks healthy, regardless of what may be happening below the surface. We soak ourselves in the hot tub. For a week, we live in a fantasy.

Then it’s over. We are back home. Together we are solid and reenergized, but indeed, back we are looking at the realities before us. I have my biopsy which is thankfully negative. Michael takes advantage of being off treatment to have his teeth fixed. He also sees an orthopedic person about his shoulder and gets a cortisone shot which provides relief. We are approaching the end of March with blood tests and a scan ahead. Michael goes for long bike rides and looks like himself.  I am reading books and planning my garden. Soon our son will return from his field work in Panama and present his exit seminar for his PhD. He’s told me he’s dedicating it to Michael who will cry when he hears that. One of his goals was to live long enough to see Henry finish. Both of our kids have exceeded our accomplishments. Sharing in that together is priceless. Michael’s blood is essentially normal and remarkably, his scan shows what seem to be two potentially cancerous spots that are tiny. Conservative Dr. Zhao doesn’t want to re-challenge him with Keytruda until there is more disease. I am uncertain about this approach but decide to go with the flow. I am writing constantly in my journal. “Life is filled with such elevating joy and crushing pain. The poignance is too much.”

1714E259-0DD5-46BA-AA6E-759A3B17C0CAThe exit seminar is a success. We couldn’t be prouder of our kid. It’s the end of April. Our wedding anniversary is May 1st. It’s our fifth “last anniversary” which we count from Michael’s diagnosis. Will it be our last? Michael writes me a note to go with my flowers which says he’ll do anything to get another one. He’s already gone through so much. Watching him eat a hearty anniversary surf and turf dinner gives me such pleasure and satisfaction. He gives me a ridiculous Roger Federer satin pillow case as a gift. We’ve had a few great months. Next up is a trip to Memphis to visit the Civil Rights Museum and Graceland.
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Describing the reality of taking our very deliberately chosen trips is complicated. Always just below the surface is the awareness that we’re not going to live to a ripe old age together. I can’t say we are entirely without hope but that hope has small dimensions instead of unlimited vistas. As Michael needs consistent monitoring we can’t go too far away for too long. Choosing our destinations means evaluating what has been important in our lives, both as individuals and partners. We made it to the Rock and Roll Hall of Fame and the National Baseball Hall of Fame. We made it to presidential homesites and libraries, battlefields and major historic sites. We visited art galleries and oceans. The main thing now is to make sure that we see what we only want to share with each other. Every one of those places is obviously impossible. But in Memphis, the Civil Rights Museum is essential for us who’ve shared a lifetime of activism and belief in civil rights. And then there’s Elvis, Sun Records and the famous Memphis Recording Studio, another must for music lovers like us. There’s BB King and barbecue and a manageable drive. “We are excellent travel partners. Yesterday Michael said he felt like we were the only two people in the world sometimes, in a rhythm that isn’t shared with anyone else. We still have a glorious intimacy on every level, especially amazing given all his treatments.”

We both cry at the pain and power of the museum. So much dreadful history that we grew up with, watching on our televisions while we were kids and then the history of all the horror that came before we were alive. We cried at Graceland too, thinking of how this innocent gifted singer was basically eaten alive by greedy manipulators and a ravenous, insatiable public. We spent some time at the studios where so many young rock and rollers got their big breaks, rode a riverboat on the Mississippi, listened to live music and ate at Gus’s Famous Fried Chicken restaurant. Then as fast as it came, vacation is over and we are in scan week. I am working on managing anticipatory grief. A tall order for me. Michael is working his way through a list of life goals, some small and manageable, others daunting. Some days, he’s quiet and dark. He always had days like that. I try imagining the alienation he feels from his own body and bearing the constant weight of imminent death. We know other people who’ve died recently or who are in hospice. One minute at a time. Miraculously the mid-May scan is NED, negative for disease. Michael hasn’t had treatment since December. Maybe his immune system is still amped up from Keytruda. We’ll take it.

During this health reprieve, we decide that we may finally have the time to adopt a dog. Flash had been gone almost a year. A shelter was having an adoption event at a local pet store. I went to look around and instantly fell in love with a tiny black puppy whose older, larger and beautiful sister had been adopted in advance. I called Michael who was annoyed that I’d picked out a dog without him but he came to meet her and could feel my happiness. So he agreed. We named her Gracie and brought her home. She seemed smart and easy to be with but by the next day, I could see she wasn’t healthy. The shelter had arranged a first free vet appointment with someone with whom they had a contractual arrangement. We took her in Monday morning and were given antibiotics for a respiratory infection. I felt like there was something more and arranged for her to see our own vet the next day. After her exam, the our doctor said she thought that Gracie had a neurological problem and that it didn’t bode well, especially considering Michael’s situation. We had to relinquish her the next day, after a difficult battle with the original shelter. I think that episode drained away all my reserves of love for a pet. I’ve never felt the energy of real pet love since that puppy. But we still had our little window of opportunity. There was a black cocker spaniel at the Humane Society. When Michael was a kid he had one that looked almost exactly the same, Pudding, who was hit by a car and left a hole in Michael’s heart. I was neutral but wanted him to be happy. We were chosen as her new family and so we had Rosie. Michael was in bliss despite the fact that the Humane Society said she was five when she was actually eleven. He was in love. A day later, he developed a terrible case of shingles. I was immediately terrified. You get shingles when your immune system is suppressed. Was cancer coming right behind this painful condition?

The June scans happen. It feels like there’s not enough time between them but Michael is still stable, no change in disease load. No one on his care team understands this – the facility tumor board says, “more power to him.” I have convinced Michael to sell his music collection. We sold some collectibles when he’d gone back to school but we still had over 7500 pieces of vinyl and CD’s. I knew I couldn’t face the task of unloading them when he was gone. He entertained several offers and finally chose a buyer who owned an independent store in St. Louis. Our music room would be emptied in a day, come August. That was one of the most sobering acknowledgements of the future that we faced together. Tempering the moment however, was his announcement that he really wanted to buy a motorcycle with some of the cash. I’d made him sell his first one once I became pregnant so many years before, hoping to shrink the odds of my becoming a single parent. So I said, no, don’t be absurd. Then I forgot about it. The July scan came rolling around and was again clean. Impossible to fathom but we moved forward, spending time with our kids and grandkids, taking a day trip to Indianapolis and trying to feel normal. I spend time trying not to focus on thinking about everything Michael is likely to miss in the future. I watched my mom attend my kids’ events without my dad. I can hear her wistful voice saying how much he would have loved watching them play basketball, dad’s favorite sport. I push those thoughts away.

In August, we get back to our place in Lakeside, Michigan which is brief but wonderful. Before the next scan, we squeeze in a long weekend with dear old friends in Oconomowoc, Wisconsin. So much lake time. We feel otherworldly, living our best lives under the onus of his mysterious Merkel cell which is in a deep snooze. But we’re managing to enjoy ourselves except for the occasional times when we look too far ahead. Staying in the present must be easier for people who are more Zen than me.

Another clean scan in August. We decide to go for another big trip in September. I am obsessed with seeing the National Parks of Utah. And I want to share their majesty with Michael. So I make the plans, a flight to Denver, a car rental and then a big push through Arches, Canyonlands, Zion and Bryce. I feel nervous that it may be too big a stretch for us but how do I know if there’ll be another chance? The trip is set. Meanwhile, I get furious when Michael sheepishly sits me down to give me what he says is both bad and good news. I brace myself for hearing he’s found a new lump. Instead he tells me that he sold the music collection for more than he told me and has bought himself a used Harley. The good news is that he has money left over to give me. I try remembering that I shouldn’t want to kill someone who’s got cancer. Given the circumstances, I manage to put aside my anger, knowing that his need to feel this thrill again may be the last time he has for it. A Harley. Unreal.

We head west. The Utah trip is magnificent and grueling. Michael develops gout and a cough. I waver between awe at what we’re experiencing and anxiety about his health. Both of us are glad we did it.

Michael recovers from the respiratory infection slowly through October. We have a big event that month – our daughter is being inducted into her university’s athletic hall of fame. The whole family attends that event. A few weeks later, the Chicago Cubs, Michael’s beloved sports team finally win the World Series. Ticking that long-hoped for event off his list is a huge deal for him.

The national election happens and our whole family is stunned and grieving about Trump being president. Our son is getting ready to leave for a postdoc in Guam. But first there is another Thanksgiving and another scan. We get through the holiday, amazed that it’s our fourth since Michael was given only a few months to live without treatment which might buy a year. What a road we’ve traveled. The November scan is negative. December brings departures and family going in different directions for the holidays. Michael and I zip off to Starved Rock on our own for two days. Always magical, I take this happy photo of Michael at breakfast.

I am a little worried because he’s gotten sick to his stomach twice after eating his favorite seafood dish in the past few weeks. Maybe he’s suddenly allergic? Who knows? We are navigating the political situation, bumps in our kids’ lives and our own anxieties about his disease. Michael is featured in an article in our local newspaper which follows the course of his cancer journey. Both of us feel awkward about it. On December 31st, we have our New Year’s dinner at our favorite restaurant alone for the first time in years. Our family and friends are all dispersed. The service is unusually lousy and the food disappointing. We’re both somewhat disgruntled but we go home happy to be together to ring in a new year, even though it is fraught with unknown but expected challenges. Goodbye, 2016, the year of nerve wracking remission and joy. Just like life.

Back to the Lake


6C4EC75A-C246-4603-88D0-61969264C69DHere I am at age seven, standing in the grassy park that borders Lake Michigan at Rainbow Beach on the south side of Chicago. Except for our brief sojourn in Iowa from my infancy through 1st grade, I was born into a family of non-swimmers, who managed to stay out of the water despite being virtually  lifetime Chicagoans. I was always clearly a water person. Sometimes you wonder how you got to be the different one in the family. I remember my parents telling me they thought I was going to be an Olympic swimmer. That was naïveté talking. For them, my voluntary entry into the frigid lake was my first step toward athletic fame. I learned how to swim adequately in that cold water and then improved somewhat in high school, where we had a pool that I mostly disliked. I always preferred swimming outside. I know how to do all of the strokes but basically, I’ve got a decent, comfortable breaststroke in addition to being an excellent floater. I’d never win a race, even when I was young. But I have endurance and can last a long time in the water.

The laat time I did any real swimming was in the beginning of March when I was lucky enough to be visiting friends in Florida, whose subdivision has a pool. Lots of the residents down there like the air temperature and the pool temperature to be what feels like a bathtub to me. I was happy to have it to myself a few times on cool mornings. Covid was on my radar before I left for this trip but during my ten days away, the progression of infections was ramping up and I was terribly anxious when I returned home through two airports and as a bus passenger. I bought groceries and self-quarantined for days before having the courage to walk across the street to see my daughter and her family. Within a week, I cancelled a long-planned sisters’ trip to Alaska and hunkered down along with so many other older people who I darkly refer to as “the death group” because of our age and co-morbidities. For the first few months, the sameness of my daily life didn’t bother me much. I had my spring garden to think about and work in, I started babysitting for my grandsons and found ways to see a few people by parking next to each other and chatting through our car windows. I was really grateful I’d had both my knees replaced so I could take walks.  

As the weather heated up, I started having some issues. Going for long walks and returning home drenched was not my idea of a good time. I started missing the water. Desperately. I knew the pools, both indoor and out, were closed in my area until the end of July. I set up a little kid’s splash pool and a beach umbrella in my back yard which really made a difference in how I felt for awhile. But I found myself spending lots of time on the internet, looking for bodies of water close to home, places where I could feel safe from the virus and yet at the very least, wade and feel a small sense of submersion. In addition to longing for that physical sensation, I started running low on the rocks and pebbles I’ve been using for years to decorate brick pavers which I use to surround trees and create borders for my different garden sections. I found myself going out in the yard to scrounge them out of a few containers I use as yard decorations.

I haven’t much liked this version of myself. Lots of people are struggling with this stressful time. And certainly there are those who are facing much more challenging issues than me. I’ve not been enjoying this rather petty and selfish piece of me that’s erupted at this point. I’ve been thinking that feeling trapped without the physical release of swimming is just one piece of a bigger picture. When Michael died, I realized how hard it was going to be to not have human contact on a regular basis. I lived my whole adult life right up until his death next to a warm body. I know, lucky me. But going cold turkey has been hard for me. Being a person who plans ahead, I decided to budget a standing massage and pedicure into my calendar. Those contacts plus haircuts went a long way to not getting in the weird place I could go with no physical intimacy. Add in swimming and hugs from friends and voila – ways to stay sane. But basically, all that planning has been negated by the threat of Covid. I honestly don’t know if there will be a return to my previous existence. So now, I’ve had two significant adjustments in three years, along with the limits of travel these days. Which brings me back to the lake. While perusing social media and chatting with friends, I saw that some people, admittedly younger than me and so perhaps less vulnerable to the virus, were on the road. And what caught my attention was the photos posted of one of my favorite places on the planet, Lakeside, Michigan. 80079841-2D77-4BCF-A4A7-DED985A8547D

The first place we stayed at in Lakeside was a bed and breakfast place at the time, sometime in the late ‘90’s. After basically going on an extended family vacation with a close group of friends further north in Michigan, our son, our youngest child wasn’t enjoying the trips  much. When our friends decided to invest in a place as a group, we opted out to be able to address our kid’s needs. From then on, we took different trips as a family. But Michael and I always slipped away on our own for a weekend in Lakeside, right on the shore of Lake Michigan. That felt like home. The lake there has this magic illusory feeling to it. You know you’re at the shore of familiar waters but sometimes it feels like you’re on the edge of an ocean when the waves are up and the water is so, so clear. After a time, as the kids got into their teens, they wanted to join us for these few days and we needed bigger accommodations. We wound up a little way down the road at the Lakeside Inn, a rustic lodge listed on the National Register. No televisions, primitive decor and furniture, it’s a little island of detachment from the rapid pace of daily life. As Starved Rock became our winter destination, Lakeside was our summer one, with an occasional fall or spring getaway on the side.

I waffled up and back about going. Was it selfish and stupid to go in this uncertain time? Was I just acting like the type of spoiled person I find so irritating? And even more than that, was I ready to go back to a place that holds so many beautiful memories of my life with Michael? I haven’t been back there in four years, since the summer before he died. We just had a scant day and a half back then because we were taking what would be the last big trip of our lives, our Utah National Parks adventure shortly thereafter. The only photos I have from that time are of Michael standing in front of our two favorite restaurants in the next town east of Lakeside, him at the beach and one of our feet in the water. 

But I have photos of our family enjoying Lakeside going all the way back to 2003. There were times when it was just the four of us. We lay on the beach, swam, collected rocks and read books. Over the years we tried lots of different restaurants in the small towns that line the Red Arrow Highway, some wonderful and others awful. I remember spasms of convulsive laughter, mostly in the expensive places, when we were sharing the most entertaining words from the book Depraved and Insulting English. We played Spades and Hearts at night or Scrabble and Monopoly. Some of us were more competitive than others. I took my son’s high school graduation picture there. 8358DFBA-A396-4DE7-B830-152D4C183E91He convinced me that we should go back to Lakeside as he’s heading out west soon, and we’d have a chance for one more special time together. I made the reservations, worried that I’d get up there and cry the whole time.  I wound up doing my crying in advance. I looked through all the old photos with a combination of joy and love, nostalgia and pain. I got worn out but in a good way.

As the years passed, our family group went from four to five and eventually six. Three generations on the beach along with a couple of dogs on occasion. What I know is we had so much privilege and fun that eludes so many people. I remind myself of that all the time.

So off we went on our brief excursion. By doing the emotional work in advance, I was pretty relaxed. My son and I travel well together and we enjoyed our couple of hours drive, listening to music and chatting. We stopped at a cafe which made good sandwiches and then headed to the Inn. I was relieved to see that good Covid practices were being observed which also took away stress. After quickly checking in, we headed to the private beach, a bonus when trying to avoid crowds. The weather was perfect as was the water. I scavenged for rocks for a long time and finally got my body into the lake. We stayed all afternoon and into early evening.

We headed upstairs and drove over to a favorite burger joint for a takeout dinner. After a day of beach and driving we were tired and decided to call it a night. We headed back to our rooms at the inn. When I looked out my window I realized a glorious sunset was taking place. We dashed back down the 115 steps to get back on the beach in time to see the flaming colors shimmering on the lake. I was so glad. Who knows when I’ll be there again, if ever? We went back upstairs and watched an episode of a series we’d been sharing on Netflix. Then my son turned in for the night. I wrote for awhile and pondered how just a few hours away from this 5 month slog soothed my tired brain.

The next morning we ate our boxed breakfasts on the long porch that spans the front of the Inn. We decided to go back down to the beach for a few hours to soak in the last moments of our perfect excursion. No one was there but us. I think many people think mornings are too cold to take the waters. They don’t know what they’re missing.

 

We reluctantly tore ourselves away for the ride home. I felt tired but restored. My body was so refreshed by the water and the vista from the shore. The same magic I always felt and had missed so badly. Although the time was brief, it’ll hold me for awhile. As we drove along, I was thinking of the face of a young native girl whose photo hung in my room at the Inn. I was haunted by the  layered look in her eyes, which were complex, sad and moving. Life has always been challenging for everyone, long ago, currently and certainly, will be in the future. Perspective is everything.
66862282-F06B-46B2-9570-7BDF71894804 Meanwhile, I’m back in the routine of these past five plus months. But I’ve replenished my soul a bit and additionally, my supply of rocks for the garden project of the winter months.
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That’s What S/he Said

EACA145A-0CD9-4DA7-BEB2-3B042240D17BThe other morning, I walked into my house after working out in the yard. As usual, I was sweaty, my normal state once the temperature rises above 70• F. My standard complaint has always been the same – “man, am I hot.” When Michael was alive, he’d always answer that comment with the same response – “you’re telling me.” A part of me never believed him because I was keenly aware of my physical imperfections. But he really didn’t agree with me. I was lucky enough to spend decades with someone who always made me feel beautiful and desirable. What a great gift to leave me. On this particular day, my son was clacking away at his computer at the dining room table when I came in and spouted my “hot” line. I’ve told my kids what their dad used to say to me so I asked him for the proper reply to my prompt. He refused me, saying he knew the answer but that it wasn’t appropriate for him to say it. I got it. I can see where he’d think that was an off-color remark for a son to say to his mom, even though I was just testing his memory. I said I understood his point, then told him that some day when I wasn’t around any more, he’d still remember what those words meant to me. He looked at me and asked, “and what things did your mom say that you still remember?” I was surprised by the question and initially was at a loss for a response. But I’ve been thinking about this for days.

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The phrase “that’s what she said,” is an iteration of a British double entendre implying some sort of sexual behavior.  Through Steve Carell’s use of it multiple times in the television series, “The Office,” the expression became popularized in America. But that sexist humor isn’t the connotation that I’m intending in this reflection. Rather, I’ve been pondering what comments, bits of advice, suggestions or instructions stick in our minds as we traverse our lives. The words you never forget, out of all those spoken to you by your family, your friends, your teachers, your mentors. In my case, I’d also include lines from books, movies and songs in that collection of the words that resonate, long after they’re initially heard. I’ve been trying to think of what different people have said to me, words that have stayed with me, which pop up randomly in my mind. And maybe even more significantly, what have I said to others, my family, my friends or even acquaintances, that they still hear in their minds. Isn’t it true that we are composite creatures, made up of input from so many sources we can’t possibly distinguish what got integrated into our perception of self? I remember once I was walking along on a sidewalk, and coming toward me was a woman pushing a stroller with a baby aboard, somewhere between 15-18 months old. As we got close, the baby and I made eye contact which we held for about ten seconds. As I moved past them, I remember thinking that the little moment of recognition we shared is stored somewhere in that person’s brain. I was old enough to remember that brief connection. For the baby who hopefully grew up, my image is tucked away somewhere, in the folds of its brain. 

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But the words, though. My mind is packed with memories that I’m lucky enough to access regularly. If that ends, I hope I’m not alive. During this pandemic experience which I share with countless people, I’ve turned inward to reflect on my life. Having the ability to recall the places I’ve lived, literally strolling through physical spaces in my brain is fascinating. I’m reminded of the lyrics from the Beatles song “In My Life,” which is an example of the words that stuck with me over these 55 years since its release when I was just fourteen. As I’ve been sifting through my son’s question – what I remember of what my mother said to me, the aural landscape has gotten bigger. I’ve even given it a title – Ancestral Noise. What a surprising study I’m in right now. Both the presence and absence of verbal memories from some people who played a central role in my life, at least for awhile, is a mystery.

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For example, I can’t recall a single word my maternal grandfather said to me, despite the fact that I spent as much time with him as I did with my grandmother. I can hear her talking all the time. The insignificant comments of random and mostly irrelevant people that still ring in my head seem absurd. So I decided I had to codify some of them. Otherwise they’ll disappear when I do and although that’s inevitable to a large degree, my historian impulse is to leave tracks of myself in my little universe so that my children, grandchildren and whoever may arrive after them, will have some sense of what influences affected the me I am today. So here’s a sampling of what’s emerged from the verbal past. My ancestral noise.

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Mom. I thought about her first because she was certainly the most talkative person in my life, much like I am with my family. At first, I was hard put to think of anything but her stories, the growing up ones of hardship, her small victories over her rigid mother, her love story with my dad, her wretched ill health and her remarkable survival skills. But actual words? That took a bit of digging. Eventually, I dredged some of them out. The Dorothy-isms. “I always wanted to be a dancer.” Mom was always wishing she was something other than who she was. A way of being worth noting for me as her child. I didn’t want to do that. 
  “Never put anything in writing.” Ever paranoid, she believed in leaving no evidence which could be used against you (I guess I didn’t give that advice much weight.) “When I die, I’m never leaving you-I’m going to hover over you and protect you.” That one was interesting because the truth is, I starting protecting her when I was quite young. Everyone is entitled to the occasional illusion. “I could never survive the death of my child.” Another interesting memory for me, as I forced a tough decision on my conflicted family regarding this memory. When  my brother died, my mom was afflicted with dementia. I had never forgotten what she said. I was here with her providing care in addition to holding her power of attorney. I wouldn’t let anyone tell her he was gone. A controversy ensued but I prevailed.  All I could think of was her unnecessary pain and confusion as this lifelong dreaded event actually happened. She died a few months later. I’ve never regretted that decision. Maybe the most practical advice she ever gave me was to remember to be creative about keeping my marriage fresh over the long haul. Although that was impossibly sexist counsel, I did think a lot about putting my relationship with my husband first, as I wanted to be with him after our kids moved on. I implemented that philosophy. Not much sage advice after spending over 60 years with someone. She had a great sense of humor and could come up with  sarcastic zingers. But there’s nothing that earth-shattering resounding in my head from mom.
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Ironically, my dad, who wasn’t known for being particularly verbal, said a lot of things which carried me through different periods in my life. Parts of him were utterly childlike and ridiculous. He called the four of us kids “little drips.” “Wake up and go to sleep.” “Why don’t you dry up?” “How about taking a long walk off a short pier?” “What’s the matter with you-you got rocks in your head?” “Did you marry your teacher today?” “Did you do your scientific studies?” “You know your mother’s crazy, don’t you? I could go on. Maybe all these inanities stuck with me because mostly, his head was usually buried in a newspaper so his pronouncements were memorable. But there was serious stuff too. “You have to make a plan and stick with it even if you get offtrack for awhile.” An excellent piece of advice. “You’re going to be smarter than many people in life. The average American voter is uneducated. When you believe in something, stick to your principles and don’t back down, no matter what.” Those words are central in my daily life and always have been. “When it comes to financial decisions, you rarely hit the high or sink to the low. Aim for some reasonable goals and don’t look back.” He explained a lot about how the world works to me. He also called me names like con artist and weasel. I can’t fault him for that. I was a streetsmart kid. A squeamish guy, not as physically courageous as my mom, when he got cancer, he bravely announced that he would beat it “the way Grant took Richmond.” He only got through one round of chemo before quitting. Unable to confess that to my mom, he told me first and asked me to arrange his funeral. A young woman in my 30’s, I did what he wanted. Years later, I figured out how inappropriate a choice that was for me. I also remember how incredible I felt when, while home from college in my freshman year, I was the only person available when my grandmother called early in the morning, shouting that my grandfather had collapsed. I called the fire department and ran a mile through the snow to their apartment, winding up in an ambulance tearing down Lake Shore Drive in Chicago. No cell phones in those days, so I was on my own while my grandmother was sedated and I stayed with my grandfather, being his advocate at the tender age of eighteen. Later that evening when my parents came to the hospital and eventually took me home, my dad said, “do you realize you saved your grandfather’s life today?” I’ve never forgotten that moment. I also remember our verbal war when he threatened to disown my sister if she married a non-Jew. I told him he’d have to disown me too and reminded him that he was the one who told me to stand up for my beliefs. He found me very irritating back then.  Finally, my dad was a an avid lifelong Democrat. When he was annoyed with Republicans, he’d always say, “death to the vipers.” At my sister’s wedding rehearsal dinner, her husband’s family, who were mostly on the other side of the political spectrum, were treated to my dad’s pronouncement following a few cocktails, shouting out, “the only good Republican is a dead Republican.” Oh my. Those are my most prominent memories of my dad’s voice.

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I can hear my maternal grandmother’s voice frequently. An immigrant, she spoke decent English with some scrambled words like saying she was having her description, rather than prescription, filled at the drugstore. She was smart but illiterate, a product of a truly male-dominated culture. She didn’t see her way out of that. But she was sharp-tongued and used a lot of Yiddish phrases, most of them judgmental and demeaning. “Gey cocken offen yom – go take a shit in the ocean.” “Gey avek – get out of here.” “Momzer, schmendrick, schlemiel – bastard, fool and stupid, respectively.” When she thought something was funny, she’d say, “gib a kick,” which meant look at that. She told all of us grandchildren individually that each of us was the only person she could trust while she confided her complaints to everyone. She liked watching baseball because she thought the players were sexy, especially when they adjusted their protective cups. She paid attention to politics and I remember her muttering that Ronald Reagan was a stupid cowboy. She was a compulsive cleaner, plastic covering her furniture which was so sticky and hot in the summer. Perhaps her most famous line was – “you can eat off my floors.”

I barely remember any specific thing that my brother told me. He made up his own alphabet which I recall and I remember discussing world wars and predictions of what the future would look like in terms of superpowers – his money was on China. The only outstanding line I remember from my older sister was her always telling me to “modulate your voice, Renee,” because I was apparently too loud. My younger sister frequently told me that if I died, she would hurl herself into my grave. The sum total of these individual words from my siblings doesn’t sound like much in the overall scope of aural memory.


I can hear my friend Fern telling me she wanted her epitaph to be “she died smiling, if you know what I mean.” I hear my first true love Albert saying, “just for tonight, I love you.” That didn’t bode well for the future. Another boyfriend Dennis, told me that if I’d married him, he wouldn’t have wound up divorced and unhappy. That wasn’t true.

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I can’t begin to list all the things Michael said to me over the years, both romantic, sarcastic and funny. “The only place I belong is with you.” “No one has a face like yours-you with the face.” “You’re the smartest person I know.” “We are cosmically connected -I’ll be with you forever.” “Take a hike.” “Life’s a hard road.” “Would you mind removing your feet from my back.” “Everything would be perfect if you’d just stop talking.” “What seems to be the greatest single problem?” “Put a cork in it.” Michael is still so alive in me. The books, music and movies we shared helped us develop a code that bound us together inside and out. He may not be here, but my dialogue with him continues daily. He’s in my head.

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So what about me? What have I uttered that my kids will remember when I’m gone? I asked my daughter. Her response was, “run.” When she was driving me crazy as a young girl, there were times when I wished I believed in corporal punishment. But I didn’t. I found a benign way to express my hostility. I held her ponytail and told her to run. She was too smart to do it but it made for a memorable moment. When my son made me want to tear my hair out, I quoted a line to him from the wonderful film, Diner. I told him if he didn’t get a grip on himself, I’d hit him so hard I’d kill his whole family. Preposterous, of course. But one day with an uncooperative playmate, he repeated it to this sensitive child. I thought I’d have my kids taken away by the Department of Children and Family Services. Aside from a variety of movie lines that I adore, I do think I’ve said some things of worth to my kids. I told them about the five year rule, the premise being that whatever is happening right now, which feels so overwhelming, should make them stop and think of exactly what they were doing five years ago. Since they can never recall what that was, I remind them that five years from now, they won’t remember the intensity of this moment. Perspective is everything. I’ve told then ad nauseam that the people with the best lives are the people with the best coping skills. Everyone’s life requires coping and the better you get at managing, the better life will be. Lastly, I tell them that when you tackle problems in life, you want to be operating from a position of strength rather than one of weakness. Identifying what’s directing your internal responses and shifting from your worst skills to your best is always the right move. Those are the best examples of my attempts to provide a strategy for moving forward. Who knows how they’ll feel years from now, when I’m part of their history. Maybe they’ll only remember me walking around quoting Animal House saying, “you’re all worthless and weak.” I’d give a  lot to see the future, to hear them discuss me and declare, “that’s what she said.” Joining the ancestral noise of the past.   

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