Grief upon Grief

Photo credit: Getty Images

This evening, I watched the solemn memorial ceremony honoring all those who’ve lost their lives, their families’ lives, to the still-raging Covid virus since last year. The Capitol and the National Mall are fortified by thousands of police and military members to ensure the safety of tomorrow’s inauguration after the assault on Congress January 6th. Rumblings of potential incidents still stir, but for a brief time, in addition to this potent emotional moment in Washington, other cities and states paused to light buildings, skies and whatever other impactful symbol they could find. A nurse sang Amazing Grace and a gospel singer sang Hallelujah. Unless your heart was made of concrete, the grief of the past year poured out of your eyes. So much loss, so much pain, so much yet to come.

St. Louis Post Dispatch: Editorial : Worst. President. Ever.

But of course, it’s more than Covid. The despair of living under the administration of who is generally agreed to be the worst leader this country has ever had, no mean accomplishment I would add, has also been a grievous experience. Truly, if I was to go biblical, I’d say he was the embodiment of the seven deadly sins. Don’t they sound right?

Pride, greed, wrath, envy, lust, gluttony, and sloth.

I’ll just let those words sit there by themselves. I could enumerate countless examples of them all. But that’s not really the point. Rather, it’s pain of the heavy toll he’s exacted through personal behavior and policies that have been like an endless daily lashing. Waking up each morning for four years wondering what the latest dastardly new phenomenon will start the day. For me and countless others, it’s been bearing up while feeling shredded, feeling as if progress has not only stopped but been racing backwards. For my generation, the young protestors who decades ago were trying to fix the inequities of all that came before us, the troubling question was, how did this privileged white man, arrogant, bellicose and vile come from the same time as we did? He is a caricature of a plantation owner who used states’ rights to convince people to fight the first Civil War when the truth was it was all about power and slavery. Yes, tomorrow he is going away. But he has damaged this society. That burden of grief won’t disappear overnight. I can’t remember what it feels like to not be appalled every day.

For me, the election of Trump was a scant two months before my husband’s cancer roared out of remission in its ultimate iteration, claiming his life in May, 2017, only a few months after the inauguration of this nightmare of a leader. So there I was, swamped by the grief of losing my partner of 45 years while encased by the grief of the abomination of this presidency. I’ve wondered many times in these blogs, which I started writing as a memoir of our lives for our children, if becoming a widow would’ve been easier absent the bigger picture of the political horror. I’ll never know.

I’m hardly the only one who’s experienced this pain. Even before the advent of the pandemic, life exacted its tolls from people. Illnesses, accidents and deaths. Job losses, mental illness, family splintering. Hunger, homelessness, hateful prejudices. Loneliness, poverty, despair. On and on it goes. Grief upon grief. I don’t know how long this miserable cycle will continue. Tomorrow we’re starting over. I think of the magnitude of the problems facing the new administration. I think of the ongoing worldwide struggle with the virus, with hunger, with climate change. I want to be hopeful. I’m on the short end of my life’s rope. But I care about the future for my children, my grandchildren. And all the children and grandchildren everywhere. And the earth. So tonight, I just let all this awful grief pour out. I’m not naive. There are hard times ahead. But let’s banish the extra weight of this dreadful time, these dreadful people and push this giant glob of unnecessary pain into the garbage bin of history where it belongs. Start over tomorrow. As the saying goes, “dare to struggle, dare to win.” Deep breaths. Fresh beginning.

Dust

My grandmother Rose, cleaning.

I remember the first time I noticed lots of dust on the shelves in my mom’s duplex. She was in her seventies. I didn’t say anything but I was stunned. Despite the fact that she deeply resented my grandmother’s incessant cleaning, and her undesired assignment as meticulous co-conspirator, begun when she was a young girl, in her adult life she’d continued the tradition of having a spotless, organized living space. “You could eat off my floor” was a favorite quote of my grandmother’s, who clearly derived self-worth from her efforts. I thought it was pitiful that such a smart old lady had such a limited view of herself. My mom’s brothers were let off the hook in the domestic responsibility arena, in keeping with the sexist tradition of her upbringing. My mom not only sustained the constant cleaning, she did it all herself. Maybe when all four of us kids were younger, there were occasional messes. But I only remember the essential order. The primary reason she did virtually everything was based on her unconscious modeling of her mother’s behavior, never probing herself to understand if it was what she really wanted. My dad read the paper and did virtually no chores other than participating in the family’s weekly trips to the laundromat. Where she diverged from my grandmother was in her determination to never inflict her abuse on her children. In that effort to save us from repeating her oppressed childhood, my siblings and I didn’t do much to share the housekeeping burdens. I have some awfully guilty memories of watching mom scramble to iron my school gym suit on inspection day mornings. In retrospect, she reminded me of Edith Bunker from the famous television show “All in the Family,” which exposed the truth of many social disparities, including the chasm between women and men on the domestic front. My mom could return home from a major surgery and within minutes, be cooking the evening meal after changing her clothes while dad lay on the couch watching the news. He wasn’t abusive, just unconscious. She never complained about the inequitable division of labor while I was growing up. Although really smart, like my grandmother, she opted to live in the traditional constraints and boundaries of her mother’s world. Although I, along with my sisters, was encouraged to get educated, I don’t think she gave much thought to our potentially professional futures which might diverge from her own limited life. College was a bonus but a husband was supposed to be the primary provider. CareersI think what she hoped for us was a safe haven, with more financial comfort than she had. My grandmother never worked outside her home. My mom was employed a few times for a year or two when our circumstances were dire, but her health was problematic and truthfully, the paradigm of being provided for was her preference anyway.

My grandmother, mother and sister-in-law at a holiday gathering.
My grandmother wearing her favorite house dress, and my younger sister, 1978.

These were my two primary women role models. My grandmother was a tough, physically strong, but bitter person, who wasn’t by any stretch a snuggly warm matriarch. Her life was hard and painful. She had eight live births, with five surviving children and as many as ten miscarriages. I don’t know if she loved my grandfather. He wasn’t an impactful character in my life – I can’t remember a single word he said to me. I do remember him sitting at the table, head down, scooping fried eggs into his mouth, while she paced behind him, serving more food while simultaneously berating him. In her very clean apartment where you could eat off the floor. My mother was happily in love with my dad, saving her hostility for her mother with whom she argued fiercely every day. Their morning conversations were maddening and I was strictly on my mom’s side, begging her to hang up the phone. In our very clean apartment where you could also eat off the floor. Neither one of them drove a car. They both ran hot and no matter how warm the weather, worked in these little house dresses called “shmattes,” old country slang for rags. They weren’t really rags, but the name stuck. They never wore shorts, both too vain to let the world see the smattering of spider and varicose veins on their legs.

Mom wearing a house dress I bought her.
Mom, again in that favorite dress, with my daughter.

My life was really divergent from theirs in ways I can’t count. Although I did marry and stayed married until my husband died, I always worked, up to and including my years as a parent. I can’t say that the distribution of domestic labor in my home was exactly equal, but my husband cooked, washed dishes, did laundry and was an active parent. My high energy made a difference in who did the most work as I was an early riser, out of the house before anyone else had stirred, returning home with the shopping done before anyone got downstairs.

I ran hot too but wore shorts and tank tops while I worked. All that observation of cleaning as I grew up reared its head when I settled into my married life. I wanted an orderly house and worked hard to replicate at least a version of how mine was back then. None of this “you can eat off my floor business,” but aside from letting my kids be self-determining about their own rooms, the rest of the place was clean. I over-achieved. I did the whole working mom, staying ahead of the housework thing for many years. An organized environment helped my brain. Life for me was comfortable that way. I liked being in my soothing rooms.

By the time our kids were gone, Michael and I had settled into a pleasant routine. He did most of the cooking. We shared cleanup. We each did our own laundry, although we swapped chores if necessary. We worked outside together in the garden. Everything worked well until his sickness disrupted our routines. When he died, I knew that my interest in cooking and cleaning would disappear. The food part wasn’t any big deal. But I wanted to have a clean house without doing all the labor. I’d found a great helper when Michael was sick but she’d moved into a different job out of town. After a few trials, I finally found a good match for me and indulged in a bi-monthly couple of hours deal that left me with only the most essential work. Trying to figure out a strategy on living alone for the first time in forty-five years was a challenge. I had my swimming. I scheduled a massage for myself every six weeks so I wouldn’t go crazy without human physical contact. I signed up for classes and joined a book club. I did pretty well for almost two and quarter years. Then along came COVID. Suddenly all my self-care plans were out the window. I’d hoped for the social distancing to relent after a few months but we all know how that turned out. I continued to pay my house helper for about 5 months without her ever coming here. My comfort level about having her in my house when she was living in a large family wasn’t going to work. So it’s been months since I’ve had any help. My house is too big for me and was hard to keep up with even when I was much younger. At seventy, it’s more than a full time job. I’m not moving because my kids live across the street. Quite a conundrum.

So dust. Now I have dust. Just like the dust I saw at my mom’s place all those years ago. Have I crossed the invisible line between being young enough to manage and old age when you can’t? Did my mom notice her dust and decide she just didn’t care about it any more? Eventually, she stopped paying attention to other things which were in striking contrast to her other meticulous habits. Is that what I’m looking at right now? I really can’t answer that question today. Maybe as vaccinations become available, six months or so from now, I’ll be able to resume the activities that were part of my pre-pandemic life. Maybe the drudgery of dusting will look pretty good if I run out of activities to keep myself occupied. When I was examining one of my dusty bookshelves, I got involved with an interesting mental journey through my life as a reader. I have a few little kid books but lots from my earnest teen years. Ages ago, Michael and I donated hundreds of books to downsize our possessions but there are still plenty on the shelves.

My first mythology book. The Beatles and Black Beauty. Romance novels, music and my first foray into James Joyce.

The books that shaped my political ideology, magic realism and lots of history.

I barely got through one small bookshelf in my house. I still love the look and feel of these books that took me back to places in time which I haven’t visited for awhile. I’ll never have the time to re-read them when I can barely consume the new ones I’m plowing through right now, in the present. Despite that reality, I’m not ready to give them up.

I haven’t forgotten about the dust. I’m sure I’ll get to some of it soon. I don’t think I’m at the point where I can ignore it, willfully or not. Ironically, its presence dusted off some pretty terrific memories that I’m glad bubbled up from years past. I still have more than the ghosts of my mom and grandmother to remind me of the sense of control and order a clean house provides. I didn’t save much from either one of them. A piece or two of old sentimental jewelry along with cards and notes from my mom. My grandmother was illiterate. But I have their two house dresses, their shmattes. Not ready to let those go either.

Overload

Margaret Annan

Odd that the person who comes to my mind at this moment is Margaret Annan. She was my teacher for an advanced placement English class I took as a junior in high school. I probably had no business taking that class, as my anti-authoritarian attitude toward organized education, had taken hold a few years earlier as a freshman. I didn’t like how school worked. I had intellectual talent and was placed in demanding classes but I consistently underperformed. I’ve written before about how my weighted mediocre grades allowed me to maintain a grade point average that was worth more than that of a student in “regular” classes. I thought that was morally wrong. But Miss Annan’s class was another matter. This highly educated woman demanded a level of engagement and academic performance that stood apart from other teachers. She was notorious for shredding what you thought was great writing, returning papers to you covered with red skulls and crossbones, pointing out the most minuscule of grammatical or sentence structure errors. Class discussions were sophisticated. Her certainty and iron opinions challenged me – I wanted to argue with her and fight for my own point of view which rarely, if ever, turned out as well as my fantasies about ensuring that my interpretation of Lord Jim was better than hers. That woman gave my brain a real workout. In the end, I credited her with teaching me more about critical thinking tools than anyone else in my life. I still practice the skills I acquired as a 15 and 16 year old under her intense tutelage.

The University of Chicago

Margaret C. Annan Undergraduate Awards in Writing

“The Margaret C. Annan Undergraduate Award in Writing is given annually to recognize excellence in creative writing by third-year students in the College. Recipients are selected by faculty from the University’s creative writing program and English department through a competitive application process. Annan, who taught for many years at South Shore High School, received her PhB in 1928 and her AM in 1933 from UChicago. She died in June 1993.”

Yes, Miss Annan was who popped up first in my head during these most stressful times. I’ve recently realized that my head is so jumbled, that I’ve been regularly making errors in my increasingly vituperative social media posts. She wouldn’t approve. I’ve fallen back on her critical thinking lessons many times before. These little errors I’ve been making are signals that my usually contained irrational side is mucking up my hard-won rationality. The dizzying political events of the past week have obsessed me. I try to stop reading, stop watching, stop listening, but I can’t. I’ve spent a lifetime trying to use my mind to overcome being buffeted around by emotional turbulence. I grew up in a home where feelings ruled. On the good days that was just fine. On the bad days, not so much.

I learned how to think my way through anything life tossed my way as I evolved into adult life. I didn’t want my kids to be as unsure of daily life as I was, never knowing what version of their parents would be waiting for them in the morning. I developed strategies for helping all of us navigate the world, inasmuch as anyone could, given the uncertainties which face everyone. I think that my greatest strengths which grew in me were patience and perseverance, necessary antidotes to the ferocity and rage that are deeply rooted in me.

Look at my sweet-faced mom. She sure doesn’t look like a vengeful, grudge holding person, does she? After a hard early childhood as a victim of all kinds of abuse, she remained an undeveloped little kid throughout her life in many ways. She was smart and also incredibly fearful. But she was a passionate, loving mother, often missing the boat on teaching her kids skills for managing problems, far from being courageous, yet fiercely loyal, often to the point when it was clear that as her child, not mentioning any issue that came up between one of us kids and our loved ones, was a wise choice because she would never be objective. When her own granddaughter, my daughter, was rude to me when she was a kid, I never told my mom, fearful that she would be so on my side that she’d damage my family for me.

So is that intensity genetic, or learned, or both? I don’t suppose that I’ll ever know the answer to that question. In my adult life, I’ve also wielded ferocious loyalty, to my husband, my kids and my friends. I also had that rational approach and that patience working in tandem with my volatility. I’ve trusted my instincts and considered the consequences of my actions. But I think my balance between my head and my heart has taken a real beating during the past four years. Michael’s long, turbulent illness and ultimate death, encapsulated within the toxic presidency of Donald Trump, has pushed me far outside the bounds of whatever is considered patience. I’ve never in my life felt like anything politically as much as an outside agitator. I’m a protestor. I have been since I was a teenager. My most recent one was a Black Lives Matter event last summer in the midst of the pandemic. There were many others along the way. My eldest grandson was a baby when our family took him to his first act of civil disobedience.

These images from last week have crystallized my fury. As a person who demonstrated in the streets of Washington, D.C., feeling the full weight of police and the National Guard, chasing us with billy clubs as we opposed a wasteful war, watching an overt violent insurrection effort to overthrow the results of legitimate election has wiped away all shreds of my tolerance. All this violence sowed by the endless narcissism of an unqualified, amoral crook, who managed to tap into and solidify the fringe elements of the right wing, in the midst of a pandemic, has finally overloaded my carefully developed intellectual control. I am furious and unforgiving. Today, I watched impeachment proceedings in the U.S. House of Representatives. During the run-up to the presidential conventions, I could’ve lived with Bernie Sanders or Elizabeth Warren as the Democratic candidate. Biden won so that was that. To hear him and his family characterized as that of a crime boss, as if that was truth, was enough to make my head practically explode. Joe Biden, the moderate a crime boss? Spare me. One Republican representative after another talked about healing. No acknowledgement of the “Stop the Steal” movement propagated by this evil man. No condemnation for his urging of violence to restore him to his throne, tossing out the votes of millions of their fellow citizens. I heard people say that radical liberals, whatever that means, enlisted their socialist friends in Hollywood to foment the hostilities that divide this country. Robert DeNiro, Madonna and Kathy Griffin were named in that preposterous statement. My young grandsons have more astute perceptions of reality than some of the idiots who are forever on the Congressional record, leaving proof that they will be remembered as having substandard intellectual firepower.

I am fearful about the inauguration on the 20th. I’ve read that there will be 20,000 National Guard troops to keep the event safe. That number is the equal of two army divisions, more troops than are deployed in this country’s far-flung international involvements. How far are we from democracy right now? Who knows? There are still people who believe that Biden’s victory was illegitimate. I think more violence is on the way. The truth is that Republicans haven’t won the popular vote in this country in decades. But this time, despite the anachronistic electoral college, the victory is clear.

I don’t envy the new administration. The multitude of issues, coupled with the deep socio-economic chasms in this country are unimaginable. And the virus. The ever-mutating omnipresent virus. So much unnecessary loss of life due to what I believe is the unconscionable mismanagement of dealing with it by the Trump administration. No one knows what the long-term ramifications of this disaster will be, personally, emotionally and economically. What is the new normal? Beats me.

So far, I’ve been one of the lucky ones who hasn’t experienced a serious illness or death from Covid. My heart hurts for all the suffering families trying to adapt to the concept that a microscopic organism, the proverbial invisible enemy, rapidly altered their lives forever. But today, I have high anxiety. My son, a bird biologist by trade, has taken a high-risk job in Peru for a few weeks at a time when travel isn’t advised and when the U.S. border will be soon be closed to permanent residents trying to return from abroad unless they can prove they’re negative for Covid. As the virus rages throughout the world, evidence supports the fact that at least 50% of cases are transmitted by asymptomatic people. If my kid is lucky enough to stay at least seemingly healthy, the risk remains that he could get stuck far from home, totally isolated. I feel afraid and helpless, even though I know that those whose last contact with their loved ones was via a tablet or through a window, have already lost what I’m only dreading. In the end, this long stressful four years has put me in a rigid place, governed by my vengeful nature. I don’t want to know anyone whose views differ from mine. I don’t want to engage in healing and dialogue with them. I feel like a cornered animal, ready to lash out at anyone who threatens my safe space. I always tell my family and friends that I play on one team. That’s always been true. And now I feel that more than ever. The overload has won. I expect more violence in the coming days which has been stoked by the madness of Donald Trump. The seamy dark underside of this society is out in the open and unafraid to act. I won’t forgive anyone who enabled this multi-pronged nightmare we are living through right now. They helped instigate what is most definitely a clear and present danger. They are all complicit. I am done with tolerating them. Done.

Thoughts in the Night

I used to be known as a morning person. From infancy through my young adult life, I went to bed early and rose with the birds. Aside from Michael, I spent more time sleeping in a room I shared with my younger sister than anyone else in the world.

As we entered our teens, she would tell me how annoying it was when we’d chatted a bit in the dark, and then I’d say goodnight, roll over and immediately begin the rhythmic breathing associated with sleep, as she lay there, trying to pass out. My ability to sleep was one of my favorite things. I used to lay face down, back to the world, not waking until morning. I never used an alarm clock. When I shared my bed with Michael, I’d sometimes wake to lovemaking. He’d lie awake next to me for hours, choosing to wake me before my internal clock did, so he could finally attend to his own circadian signals and fade into his own cycle, closer to daylight. After some time passed, we adapted and inched closer to each other’s preferences. Not long after though, babies disrupted our schedule. My son, who didn’t sleep through the night until he was five, changed my sleep patterns forever as I always had one ear, which in my mind, looked like a radar dish, turning constantly, alert to any noise.

I can’t pin down the exact time I started pushing the bedtime later and later. One reason I did was from a desire to have more time for me and what I wanted to do. I was keenly aware of how big chunks of my day were allotted to obligations, work, kids, cooking, cleaning and later, a ton of caregiving required by my parents starting in my mid to late thirties. Michael, always a late night person pushed his limits for years. When he got sick and ultimately retired, the change in our daily time requirements made us both willing to stay awake into the wee hours with very little structure left to worry about. Ultimately we reversed schedules with me doing crazy stuff like watching Roger Federer play live tennis in the Australian Open, with day swapped for night. Something about the silence, the darkness, was calming for me. No sounds but the ones I chose. During the last months of Michael’s life, I was constantly wakened, sometimes hourly. I stayed close to him in a curious state of semi-consciousness, during which the most irrelevant ideas and thoughts intermingled with the most profound. After he was gone, I tried to return to a more traditional routine. I failed. I think I’m hopelessly addicted to the deepest part of night. I’ve found my way to consecutive hours of sleep but I’m sure my circadian rhythms are permanently altered. Perhaps my life will be shorter. Thinking of some of the degradation I’ve seen as people begin to fail and become so much less in old age, I can’t say that frightens me.

Last night when I was turning in for the night, or the morning depending on your point of view, I was anxiously thinking of the senatorial runoffs of today – Georgia On My Mind by Ray Charles was my last post on social media. As I sit here at 1:24 a.m., I am joyously celebrating what appears to be a double Democratic victory, what is essential if real legislation is going to be accomplished during the post-Trump four year debacle. I scarcely know how to imagine that once this administration finally ends, the threads of life before the madness can be collected and pulled back into something resembling a more recognizable facsimile of democracy. It’ll be a complicated haul. But an incredible relief.

My night life is not however, always focused on such weighty issues. I read, I watch television, I knit. Sometimes a song or an article starts a cascade of thoughts that are just entertaining or thought-provoking. My mind is like a playground – I’m never bored. Today, Stairway to Heaven came up on my Pandora feed and that started a train of thought. I always liked Led Zeppelin but that song had become the joke that people shouted out at the end of other artists’ concerts, trying to get an encore. Truly, it’s a great tune. Hardly an earth-shattering thought but there it is.

Seth Phillips, known from the Instagram account
DUDE WITH SIGN, SETH PHILLIPS

Because I am so tired from the political stress, the pandemic and other real life matters that require too much concentration for writing a cohesive piece, instead I’m simply going to mention all the things which crossed my mind in recent hours, mundane or not, as I made my way through another unquiet night in my head. First is my confession that I’m one of the legions of followers of the Instagram account, Dude with a Sign. They’re not always funny, but sometimes they’re just perfect and I can use the laugh.

And then my mother was fluttering around. I can’t figure out why my mom had such a powerful, distinctive scent, so strong that I still smell her in my parlor which was once her bedroom. When I open the door, it’s just like a blast of Dorothy, amazing since she hasn’t lived there in eight years. On New Year’s Eve, my family gathered at my daughter’s house. She inherited my parents’ breakfront which I’d wanted badly, but I didn’t have the right space for it. Somehow the conversation turned to mom and my son-in-law mentioned that the inside of that cabinet still smelled like her. Odd though it was, I opened the doors and stuck my head inside and instantly, she wafted into my nose. So weird. I always wished Michael had such a special aroma. I can smell his deodorant, Old Spice Sport, but that’s not organic. Thankfully, he exists in me in different ways.

I’m not reading as many books as I want to and have a bunch loaded onto the Kindle app I use on my phone. Supposedly the average American reads twelve books a year, but other estimates indicate that actually it’s more like four. I’m ahead of those numbers but I’m behind my own goals of at least three a month. I think it’s because I’ve spent so much time obsessively reading political articles during the Trump era. I hope I can fix this once this administration is actually gone, which will still take some time.

Speaking of books, I think I need to read more that are funny. The three above made me laugh out loud. Generally though, I tend to read non-fiction that’s pretty serious. I think I figured that with limited time to learn, I should chuck the lightweight stuff. I’m trying to read more novels. If they make me sad, that’s alright. I’ve decided there’s value in reading anything that evokes feelings, whatever they may be, happy or sad. Better than coming up empty at the end.

I like idea of having a spirit animal and picked a dolphin for myself years ago. They have big brains, speed, compassion and playful joy. Sounded perfect. Then I decided I needed a bird too. I selected the albatross which can fly for thousands of miles, live on isolated islands and mate for life. Excellent. But tonight I realized I have no land animal. Seemed like an oversight. I’m still thinking about that.

Today is the birthday of a woman with whom I used to be very close. Our relationship ended over five years ago, leaving me with a bitter taste as I felt used and discarded by her, and ultimately her whole family. Sometimes things change because they run their course. I get that. I just wish I didn’t have to remember all of their birthdays. In fact, I remember an absurd number of birthdays, clinic numbers, telephone numbers, addresses, driver’s licenses and on and on. I remember that two kids in my second grade class were both born on March 4th. I don’t understand why these irrelevancies are parked in my head. There’s not much I can do about it. Michael always told me that if I started developing dementia or Alzheimer’s, I’d just be like a normal person. Gallows humor, I know.

DNA methylation
Horizontal gene transfer of the algal nuclear gene…

So then I went down these two science rabbit holes about which I’m completely unqualified to say almost anything. The DNA methylation is basically about changes to our DNA caused by any number of factors, both external and internal. Thousands if not more of these alterations are happening in our bodies daily. These processes are connected to epigenetics and essentially, can be responsible for lots of internal degradation if you’re unlucky. And then there’s the connection to aging which is a whole other matter. The horizontal gene transfer subject sounded like a really cool idea to me. I was thinking about microbial exchanges so that I could imagine that surges I feel for Michael are really happening because parts of his actual biota are now part of me. On further examination, it seems that this process has more to do with causing certain bacteria to become more resistant to antibiotics. Further along, the article got into the topic of genetic engineering. I liked my idea better.

For awhile this evening I was trying to rank my top five songs by The Rolling Stones, The Allman Brothers and Little Feat. Why would anyone care about that but me? And for my daily dance party which I’m substituting for my sorely missed swimming, I was thinking that James Brown made me move the fastest. So now everyone knows that tidbit in case you have a dance party of your own in the works.

All of these wanderings while I spent hours this evening, anxiously watching election returns and analysis, worrying about the crazy election certification process scheduled to unfold tomorrow. I’m hoping there’s no violence in Washington but I’m prepared for anything. Soon January 20th will come with its inauguration. Maybe I’ll get my Covid vaccine. Then I can pick up the writing of memories I’m supposed to be leaving for my family. Somehow it’s now 3:16 a.m. I’m hoping to be asleep by 4 after reading another chapter or two of my Isabel Allende book. Not my favorite genre, magic realism, but engaging and well-written. No more thought from this night.

Out of Here

The new year began with an ice storm. I’ve seen worse. Ones that caused power outages for a week with everything in the refrigerator melting and sodden, lots of candles, flashlights, layers of clothing and four feet of water in the basement. After a crazy long extended warm spell I was okay with this, looking at it as an opportunity to take some cool ice photos and stay indoors.

Today, however, I woke to the news that in addition to the 140 Republican representatives in the U.S. House there are now a dozen plus U.S. senators who are going along with our mad king’s insistence that our national election was stolen from him, despite his having lost by more than seven million votes. His pathological mental disorder has bewitched millions of supporters. The politicians are another matter. Except for a few acolytes who are remarkably stupid and uneducated in the matter of democracy, I view the rest as cynical gameplayers positioning themselves as the heirs apparent to the legions of ignorant, selfish citizens who apparently wouldn’t recognize an autocratic coup attempt unless they were personally locked up. I’ve been furious and stewing all day. I don’t believe this movement has any legitimacy, but the turmoil and division sown by this loser who will ultimately be facing criminal charges is the new politics, not just the ugly underbelly of this society.

Back in the ‘60’s and ‘70’s, during many anti-war and civil rights demonstrations in which I participated, there would be plenty of jeering hecklers whose favorite slogan was “America, love it or leave it.” Their version of patriotism versus mine. I’m willing to admit that after the past four years, getting out of here has made being an ex-pat sound more and more tempting. Not that I can actually go anywhere in the midst of a global pandemic. Nor am I certain that anyone wants spare Americans. New Zealand is a long swim away. After a sour day of choking on my fury, feeling ineffectual and not accomplishing much of anything, I finally thought of a way out of here. A little time travel works. So back I went to the fall of 1984.

Making a baby took Michael and me more time than we’d anticipated. We’d been together for seven years when we started trying and felt truly ready. But it didn’t happen. Our doctor suggested we stop worrying about it, take a vacation, and come back to see him after a few months. After a relaxing trip to Colorado, we returned home and shortly thereafter we got lucky. We canceled all the fertility treatment appointments and waited to get through the uncertain first trimester. I remember how nervous I was because I was never nauseous. Both my mom and older sister talked about being unable to eat and throwing up all the time. Given my robust appetite and about one second of wooziness, coupled with my parents’ superstitions and comments like, “if you prepare too early, you’ll curse the baby,” I was pretty anxious during my first trimester. After that time passed, and I felt as safe as anyone whose life is about to get very different, I was all in as a mother. I read everything about babies and child rearing and thought a lot about what I did and didn’t want to do as a mom. Our baby girl was born in late August, 1981. I was thirty and immediately totally obsessed with this little thing.

Michael was thrilled to be a dad, especially because he came from a family which lacked deep connection and intimacy. We decided that we weren’t going to let being parents change our lifestyle but rather, that we’d fit our little nugget into everything we did. After some fiascos which were entertaining in retrospect but nerve wracking in real time, we realized that were some places a baby just didn’t fit. In addition, after almost ten years of being just us, we thankfully recognized that we needed time alone to just be with each other and recharge our relationship. After the first year or so, we got weekly babysitters, and even better, were lucky enough to see my parents on a regular basis, where they eagerly lapped up all the time they could get with our highly entertaining, impish kid.

The one hurdle we couldn’t leap, most especially me, was spending a night away from her. I couldn’t understand how people could have a kid and then almost immediately leave the awesome responsibility of its care to someone else. I marveled at those people who could just pick up and leave for a weekend without fear or guilt. I also felt pretty superior to all of them in my devotion to mine, if I’m being honest. Eventually, though, after countless nights of being up with the winner of the double ear infection contest, and being shoved to the edge of the bed, I was desperate for alone time with Michael and some uninterrupted sleep.

Finally, in October of 1984 when our baby was already three, we planned a trip to Galena, Illinois, a quaint historic town a short distance from the Mississippi River. We drove up to Chicago to leave baby precious with my parents. Driving away, I was riddled with anxiety about her feeling alone and abandoned. Nothing like a little projection. One of life’s pitfalls. After about an hour’s drive, we made a pit stop, an excuse for me to call my girl with reassurances that I wasn’t really out of touch. She was so busy playing, she barely said a word to me. So off we went, slipping back into the familiar groove of just us two.

We stayed at the Aldrich Guest House which was both lovely and intimidating. Our previous travels were a mixture of camping and motels which were very private. The cost of this place was way beyond our normal budget. Sitting around a breakfast table with people who actually stayed in these accommodations on a regular basis gave us an impostor-ish feeling. That part actually turned out to be just fine, as both of us could manage small talk with strangers. And I did get a recipe for delicious buttermilk/raisin bran muffins that were a family hit for many years.

Our room was a little harder to relate to with its elaborate brass version of a Louis XIV canopy bed, lace-trimmed sheets and a turndown service which included fancy chocolate truffles on our pillows with a side table of coffee, tea and biscuits as a bedtime snack. We were surrounded by beautiful antiques and were sure we’d either break something or shred the bedding.

Cedar Bluffs were just down the road from the Mississippi River and a few which made for a lovely stroll and view. The Galena River ran right through the middle of town – we crossed a walking bridge to get from our residential area to the beautifully preserved downtown area with its quaint shops, its touristy ones and a remarkable number of historic restaurants, many of which were ethnic and had been around for years.

We wandered, schedule-less for the first time in years. We spent a lot of time in cheese and wine shops, tasting our way through lunch as a way to get more time sightseeing, and as preparation for gorging ourselves at dinner. One night we ate outside in an Italian rooftop cafe called Vinny Vannuci’s, with soft candlelight and lots of chianti. I hadn’t been muddle headed in a long time. After one more unnecessary call to my parents, we swooned our way back to the canopy bed where we stayed for a long time.

We hit all the history museums including the home of Ulysses S. Grant whose hometown was Galena. Lots of pottery shops and art galleries find their way to towns like this which draw tourists who are likely to spend discretionary income on one of a kind creations. Many places were packed with drool worthy items. I was drawn into a jewelry store filled with local designs and antiques. I couldn’t take my eyes off this blue topaz ring in a setting straight out of the late nineteenth century. But baubles weren’t on the to-do or to-buy list. Our second night we had dinner at some crowded place where the wait staff burst into operatic arias as they delivered your meal. Average food but an unusual experience.

We trekked around through town one more day, checking out old houses, an ancient jail and generally being aimless. I feel like that trip was a demarcation point of sorts, a reminder of what our life had been and an adjustment to the notion that one day, post-child or even children, we’d go back to this type of living again. A re-set. And a good one.

We checked out of the Aldrich Guest House and into the dingier more affordable Grant Hills Motel where we felt more comfortable. One more kidless night which we took full advantage of before heading back to life which would be the norm for years to come. We were happy and sated in every way, our kid had a great time with my folks and all was good.

Regular life was quickly re-established and soon the winter holidays were upon us. One night, Michael, the gift master, shoved a little box across the table at me. I recognized the name of the jewelry store which had the ring I coveted.

I was utterly baffled. We were together the whole time. How could he possibly have gotten this for me? I opened the box and found myself staring at a ring I’d never seen before. He’d written down the name of the store and after returning home, had called the owner and described what was not the blue topaz, but instead this antique amethyst which he’d immediately purchased, received by mail and hidden until late December. I was so moved by his impossible sweetness that it was years before I told him I’d wanted something else. Of course I no longer did. I’ve been wearing this ring for over 36 years now. He surprised me with several more rings throughout our life but this one has layers of meaning. I don’t expect to ever remove it. Not while I’m breathing.

Well, that worked. While I dug out my photos and composed this, my blood pressure dropped and I was distracted from politics even though more madness erupted from the day’s news cycle. I’ll come up with another good memory for tomorrow.

Retrospective

My first photo of 2020 – January 1st.

On this afternoon of the last day of December, I’ve tried to find an appropriate way to assess this most challenging year. I began January with hope and determination. The photo above is the little city lake where I would go to cry in the early morning in the last months of Michael’s life. I could be there now without crying. I continued to be inspired by his valiant struggle for life, planning two trips to keep myself moving forward, experiencing new places, being brave.

January
January
January
January
January

I had a trip planned to Florida late February to early March. My sister and I were supposed to go to Alaska in May, the trip of a lifetime. I was counting down what I hoped would be the last months of the heinous Trump presidency, which for years caused me incessant rage and fury that wasn’t getting any better. Fire was decimating Australia. I stayed up late at night so I could watch my beloved Roger Federer play in the Australian Open which didn’t go very well. I lost my mother’s wedding ring when I used a gift certificate for a massage in a place which had no lockers. I couldn’t stand the idea that it was gone and finally, after two miserable days, it was found in a corner and returned to me by the therapist who was so kind and concerned. Then there was this letter which I wrote to Michael as I’d been doing since his death.

February 1, 2020
Hi baby,
Wanna hear about my PTSD? While I sat in line today at a stoplight, I watched a guy in his car touch his mouth, his nose, his eyes and his hair in under 30 seconds. There’s this coronavirus going around that started in China. With people like him, a lot of folks could contract it in no time. Population control. I haven’t been able to stop watching what people do to spread contagion since you got sick.

I guess I was being prescient. A few days later….February 4th, 2020
Hi baby,
Ugh. What first? I’m really sick. I have almost 101 degrees fever. Deep, painful cough. Too much Australian Open, not enough sleep, exposure to germy kids. It’s been over a year since I’ve been this sick. Pushing my luck. Part of me cares. Part of me doesn’t. It’s your sister’s birthday. I wish she was dead instead of you. You weren’t mean like me. Whatever. Tonight Trump gave his State of the Union address. It wasn’t surprising but it was hideous nonetheless. He wound up giving Rush Limbaugh the Presidential Medal of Freedom. Because he’s got stage IV lung cancer. It was announced hours before the speech. But he faked surprise. Hideous.Trump trotted out token black people, a token hispanic. What a charade. In my whole life I’ve never experienced such a schism. Living among the brownshirts.God I miss you. This is really hard. And lonely.

February 6th, 2020
Dear Michael,
I am so sick with this flu. I’m just finishing my third day with fever and an incredibly painful cough. It’s been a long time since I felt this terrible. When I looked around the house for medicine to help with symptoms, everything had expired and Elisabeth had to drop some off. All I’ve done is sit on my ass and stare at television. I’ve missed two classes, a historic preservation committee and all my swimming. I did it to myself. Too much Australian Open and no sleep for two weeks. Wore myself down. I guess I could die from this. But I don’t feel as terrible as that. Not yet.
I hope you’ll be around if I do.

February 10th, 2020 – Dear Michael, Tonight I watched Trump feeding red meat to his base. Did I tell you he was impeached? Still in power but furious. He told the crowd that Obama should have been impeached and still should be. The crowd applauded loudly and chanted “lock her up” about Nancy Pelosi who tore up his lying state of the union speech. The political world is mad and dystopian. My senses of taste and smell are virtually gone right now. I hope they come back.

So did I have Covid back then? I’ll never know if it was that virus or a different flu which got past my vaccination. I felt awful for a few weeks. I delayed and shortened my trip to Florida, leaving for Naples on March 1st. The first day there, I stayed in my nightgown and rested, fearful that I’d blow my recovery. But I was lucky to be there.

With each passing day, my friends and I were getting more alarmed by the news of the virus. They decided they were going home to Wisconsin. I had no clue that I, who normally swam five days a week, wouldn’t see a pool for the rest of the year. When it was time to go home on March 11th, I was terrified. Two airports and a bus ride packed with university students returning to my hometown. My sister picked me up at the bus station and we didn’t hug each other. I had a house full of masks, sanitizing wipes and hand sanitizer left over from Michael’s last days. I put on a mask, went grocery shopping and then into quarantine for two weeks. Next, I canceled the trip to Alaska. Although we’d bought great insurance, there was one bit of fine print – everything was covered but a pandemic. We got some money back but lost a chunk. I guess rich people absorb those losses better than us peons. When I came through all that, lockdown had arrived. My grandsons were in Zoom school. My son, a biologist working in Panama, made it back to the states the night before the border closed. New routines began. Groceries delivered and sanitized before coming in the house. If I saw a friend, it would be from a distance. My kids were my bubble. And wasn’t I the lucky one to be living right across the street from my family? My daughter had the most people exposure due to her job, an employee of the federal government which was having a terrible national response to the virus. I watched Cuomo of New York and Dr. Fauci rather than the president. Trump using the spread of disease and deaths as a campaign platform which drove me crazy. Narcissism, stupidity and no empathy. What a combination. An election year. Mad weather events. Anxiety about the world and so many suffering people. I went outside and photographed my small life, worked in my garden, helped my family and tried to help friends. Life was still happening, albeit strangely. I gave what I could afford financially and tried to support people struggling with depression. There were suicides. I wept at too much tragedy. Miraculously, I could carry on. I remembered that my daughter called me a cockroach when Michael was dying, able to survive anything. I was dubious and careful.

Spring arrived, allowing for outside, socially distant get-togethers. The welcoming dirt of my garden and outside labors. The political news was still awful as was the virus raging away while huge numbers of people ignored it and did as they pleased. Maddening. Infuriating. I wanted to move to New Zealand.

I got through another wedding anniversary without Michael. Then Mother’s Day, my old friend Fern’s birthday, gone now for many years, and then finally my birthday. The next day, George Floyd was murdered in Minneapolis. People poured into the streets to protest the continuing racism and inequities in our judicial system. I worried about the virus because of my age but in the end, I went to the streets too. I’d spent a lifetime protesting and if I got sick, I knew that principles had to come first. So be it. Masked up and went with my family.

Summer. The presidential campaigns, more virus, more outside, more solace in nature. I read, watched television series, wrote blogposts and letters to Michael. I watched Pete Yorn play free livestream concerts on Instagram. I was constantly looped into the news cycle, afraid to look away.

I set up a kiddie pool and umbrella to help manage the heat and to pretend I was swimming.

We celebrated the Fourth of July, fervently hoping for a return to democratic norms in the fall election. Birthdays were celebrated too. My son and I took a one day trip to the place in Michigan where our family had shared so many happy times. I felt revived from the privilege of immersing myself in Lake Michigan, where I’d learned to swim,even though it was only for a few hours.

The next thing you know we are barreling into fall. Life feels so the same every day even though disruption is everywhere. The death toll keeps rising. People are hungry and broke. I write letters for political candidates and donate what I can to help the campaign for a return to sanity. I’m teaching my oldest grandson state capitals, cursive and homonyms. My son and I babysit for the boys to give my daughter and son-in-law a break from the work/home school grind. I drive into the countryside frequently, and also to a beautifully landscaped basin which attracts waterfowl.

Finally the election arrives. On my son’s birthday. Although watching the returns is anxiety-ridden and the ultimate results take too long, at last there’s hope for a return to some kind of normalcy. That is, if we can survive the mad king, the conspiracists, the crazed acolytes and the virus which is the plague. We have a low key Thanksgiving without our extended family for the first time in decades. But it’s the right thing to do.

And now winter is here along with more waiting. Waiting for January 20th when a sane man becomes president. Waiting our turns for vaccinations. Still wearing our masks and being careful. Grieving for so many dead and their surviving families. Trying to stay patient and hopeful for a chance at a wider life, while grateful for being fortunate so far unlike many others. Glad to turn the calendar page to 2021. Tonight there is the most beautiful moon. Ill keep looking at the beauty around me. Find it while you can, where you can. That’s about as far as I go with resolutions. Happy New Year. And thank you for journeying with me.

Cancer – The End – Chapter 13 – Part 2 – Be 278

“For you I’d bleed myself dry.” Yellow by Coldplay

I know that so many people don’t have homes, not to mention the countless others who do have shelters, but daily, approach them with dread because of what’s waiting inside. The bones of my big old house in early spring have always been a welcome, heartwarming embrace until that day, March 4th, 2017, when I made the turn into the driveway, that same turn I’d been making since September, 1978. Bringing Michael home after our 32 day stint in the hospital was the single most frightening day of my life. I’ve borne children, taking on the weighty responsibility of guiding them from total dependency to adult life. I steered both of my parents through cancers and ultimately their deaths, carrying the yoke of decision-making about their ends of life as I simultaneously became an orphan. But nothing compared to the magnitude of being solely responsible for shepherding Michael through what remained of his life. We’d talked ourselves to exhaustion and grief so many times through the previous five years, making decisions and plans, clinging to each other in our bed, sobbing, sweaty, passionate and stricken, until we finally passed out from our inability to relate to this inconceivable reality. On this Saturday afternoon, Michael wasn’t going to our bedroom, but rather to the blue room, a place of total disarray except for his hospital bed and my recliner which I’d jammed through the doorway. Just a few months earlier, the blue room walls were lined with floor-to-ceiling oak CD racks along with a big shelving unit for vinyl albums. Michael had built all of those racks and adhered them to the walls. However, just a few months earlier he’d sold his music collection and all the racks but one along with it. The walls needed patching and painting but we hadn’t gotten to finishing that task yet. Now, despite its bedraggled condition, it was his home and mine as well.

My fear was matched by Michael’s confusion. He was exhausted, his days and nights mixed up and the omnipresent food issues a constant source of friction. Trying to clear his ropey saliva made him throw up every calorie I could get into his body. He was constipated and uncomfortable and I needed to help him. He tried to stay within the dignified boundaries we all take for granted in life. But he was too limited. I had to cross all those lines as I did with my parents but this situation was so much more painful. He cried, feeling there was so little left of his former self. I took comfort in knowing he’d forget some of these miserable moments, his degradation. What about me? Those first few days at home were almost ritualistic in their repetitive chores. The caseworker at the hospital dropped the ball with home health care, so it was just us. Sleep, wake, toileting, showering, eating, nausea and more sleep. Michael was still a big man who pushed his walker so fast I was afraid he’d fall flat on his face and that I’d never get him back up. I gave my frequently unwanted help. My bone on bone knees were killing me. We struggled forward. He was still in active treatment and too close to the inflammation from radiation to know if anything had helped. So far, he’d been too tired to figure out how to lower the bars on the side of the hospital bed. I still had control and realized I’d better transcend my emotions and think us through whatever is ahead. While Michael slept, I researched. And I considered the hypothalamus.

From the Endocrine Web

I was no scientist. But I understood the significance of that piece of the brain. The link between the endocrine system and the nervous system, it regulates the most essential functions of our bodies and hormones. Appetite and weight, body temperature, emotions, memory and behavior, along with the sleep-wake cycle and the sex drive. Plus it manages the pituitary gland which in turn controls the thyroid, adrenal and sex glands. Michael’s hypothalamus had been cancer’s feast. Its every single function was damaged by disease. I wondered if any of it could possibly recover. When I was rational, I remembered all this. When I wasn’t, I was just clawing my way through the hours. But I knew my Herculean efforts were not enough.

Michael with Rosie

We were on our own until March 8th when home health care finally showed up. The nurse was only prepared for an intake interview. Michael was supposed to have a blood draw on the 6th. Now more waiting. The doctor was trying to see if he could get another Keytruda treatment. The ineptitude drove me crazy. Lost in a bureaucratic nightmare. I was trying to do physical therapy along with basic care. Michael was crabby and angry. He’d yell at me about the way I was getting his pants on and tell me to go away. I’d lose my mind, yell right back and then feel horrible. As my former coworker used to say, I was on my last nerve. The nurse weighed Michael who was down to 179.4 pounds. He was at 201 when he entered the hospital. How could I get him to eat? I decided that fresh air might help. He picked up his walker and started going out on the front porch. So many stairs. I tried to stop him. He threw the walker aside while I grabbed his shirt. He reeled around angrily and plunged back into the house, almost keeling over. He has no idea what he’s doing but has rage that he’s so much less of himself. His vision is blurry. He can’t understand the television remote or his phone. His memory is shot and his impulsivity is active. Will we both survive?

Elisabeth comes over when she can to help, trying to coax him into eating something. Henry is up and back between Panama, home and Guam. Michael won’t see anyone else. But the lonely cycle was awful. Like Alzheimer’s with a side of cancer. I knew the cancer would take over eventually. I couldn’t fathom the possibility of living this way for an extended period of time. I was feeling empty and exhausted, forgetting the substance of our relationship. What a wretched way to end our life together.

March 10th, 2017 – The reality of this is that I’m pulling Michael through all of this. Absent my presence, he would already be dead. He has no appetite and would neither eat nor drink without my constant prodding. He is disconnected from reality and has no energy. Can any of this recede? Can I get him to the next scan? Does it matter? There’s no cure for this disease. Just buying a little time. That’s the truth. Getting to the actual business of dying isn’t easy. Not for him, me, the kids, anyone. I need a plan. How do I help my kids? What can I do with what’s left of me?

Days go by in a blur. Sometimes Michael seemed lucid and we talked about death and hospice but then he’d forget. Sometimes I wondered if I’d remember how much I loved this man when he’s being so angry, frustrated and nasty. I didn’t make the food tasteless and I didn’t give him cancer. Every so often we’d have a normal conversation but then he’d ask when we’re going home. I needed to stay hopeless. Early in the morning when I knew he’d stay asleep, I drove to Crystal Lake Park and cried for about 15 minutes. Then I’d go to Steak and Shake to buy two chocolate milkshakes. I’d doctor them up with an entire Boost and lots of whey protein. I’m hiding calories from him, noting that somehow sipping from a straw is better than chewing.

On March 15th, we go to see the doctors. I was prepared for a hospice recommendation but they thought he looked pretty good and showed no new deficits. They recommended a stomach feeding tube which Michael agreed to, stating that he wanted to live. They think the first Keytruda infusion is holding the cancer at bay as he has no pain or other tell-tale symptoms. But he needs another one. We scheduled an appointment for tube insertion on the 17th. That night, Michael tried to use his computer for the first time since early February. It wasn’t too awful but he cried, saying he didn’t feel comfortable anywhere. We go the interventional radiologist for the insertion of the feeding tube but are astonished that his weight is up to 189.4 pounds. He takes his coat off but the gain is real. So we decided to postpone. On the way home, he said that he wasn’t hungry but he ate half a cheeseburger, a few french fries and the bulk of a milkshake. I feel like I’ve won the lottery.

The rest of March is a blur. Michael is awake more of the time but that mostly means he has space to be frustrated or confused. He says we should go to the lake or the zoo. We’ll be having a seemingly normal conversation when he suddenly asks if he has an oncologist. Home health care finally sends physical therapists, occupational therapists and social workers. He’s mad at me because he feels powerless but won’t see anyone if I’m not there. All technology overwhelms him. We try practicing cognitive skills with the newspaper. The last current event he can recall was that James Comey was fired. Scans are scheduled for the end of the month. Henry is coming home before he leaves for Guam. I dread his grief. Michael and I cry together. In his lucid moments, he remembers that he is the primary cook in our household and asks what I’ll eat when he’s gone. He also asks what I’ll do when he’s dead, tells me he wants me to find partnership, and that I have too much life left in me to be alone. I tell him he’s fucking crazy. Then he suggests that we move to Oregon where suicide is legal and kill ourselves together. I am numb. The tests will tell us what, if anything, is still ahead. I dread hearing that we’re out of options but I’m getting ready for that.

March 23rd, 2017 – I have no idea what will be left of me when this is all over. March 28th, 2017 – Michael wakes me at 4 am to talk. He says he’s disappearing and that I need to help him make plans. He’s trying to remember if he got a Phd, that he’s having trouble remembering. I give him a Valium so he can go back to sleep. March 30th, 2017 – Henry leaves for Guam tomorrow. Everyone is so sad. When will he have to come back? I’m waiting for Michael to finish his scan right now. Our radiation oncology head nurse walks through the lobby and tells me I look radiant. She must be out of her mind.

On the 5th anniversary of Michael’s original diagnosis, we get the news that more tumor has shown up along his spine. The oncologist thinks that his spinal cord is being compressed and that he should be admitted back into the hospital. For me that might be easier, but I refuse. Michael isn’t in pain and is still functional in all excretory systems and movement. I think he’d completely break mentally if he goes back there. Home is where he wants to be, strange as things are, so here we stay. We decide on another ten rounds of radiation to the back and a Keytruda infusion. If it kills him, so be it. He’d rather go down trying. I’m absolutely sure of it. In this time period, one of our oldest friends comes to sit with him for about an hour while I go to the store. Aside from him that one time, the family and the medical people, he sees no one. Some days, he is terribly short-tempered. He yells at our oldest grandson who is afraid and wounded. This just won’t do. I explain that he owes that little boy an apology which he manages while crying. Later, that sweet boy tells me he knows that cancer has corrupted grandpa’s brain. This is the little one I cared for from 7 weeks to age three. He is like oxygen for me.

April consists of changes. Michael wants me to lay with him in our bed. I’m afraid to go upstairs – so much danger, so many steps. We’ll try the couch first. Meanwhile treatment begins starting with radiation coupled with Keytruda in the middle. It’s a lot. Michael will have had 78 radiation treatments, 20 chemo treatments and 21 targeted and immunotherapy treatments. Unimaginable. He shows more fatigue but manages to eat a chocolate chip ice cream cone and a cup of french onion soup after the third round of radiation and and one infusion. We go to the outdoor basin we love in the middle of town to sit outside for a bit, even though technically, someone in home health care can only be home outside of a medical facility. Who cares? We’re living in tiny moments and squeezing what we can from them.

April 11th, 2017 – Last night we slept in our bed. Michael is thinking of his death. I was nervous and aware of every movement and touch. Should I be doing this? Living up until the end? What happens when I’m alone again? Am I alone already, for all practical purposes? The pain is excruciating. April 17th, 2017 – This morning I went to run a few errands, fairly certain Michael would be asleep until I came home. When I returned I could tell that the downstairs shower had been used. I was afraid he might’ve left the house and ran upstairs where he was lying in bed, dressed. He was very teary and told me he was dreaming that I wasn’t coming back and was very afraid. Just like when this whole thing started in January. What a huge responsibility.

We get some good days in the end of April. Sometimes Michael gets food for himself, small amounts but still showing interest in staying alive. He spends time with his grandkids. He left the house on his own for a few minutes which scared me. He cried because of his shortcomings. Cancer as a shortcoming. How unreal perception can be. He told me he was trying hard to think about me but that he mostly thinks about himself. He’s never experienced a death close to him. He can’t believe it’s possible. No frame of reference. I just hang on. Doing the spring chores, working in the garden while he sleeps, wondering who I’m going to be when this ends.

May 1st. Our wedding anniversary, over 4 decades ago. In 2012, we thought we’d had our last one. But here we are. The nurse is coming for a blood draw. I am chatting away with Michael in the living room while I straighten up when I glanced at him and thought his expression was strange. He asked me why I was yelling at him and said he had no idea what I was talking about. I went to him and started asking questions that let me know if he was in a short-term memory loss state. He was looking intently at my mouth. I asked him if he knew my name and he said no. I called the oncologist’s nurse saying I was thinking he’d had a stroke. I called my daughter who came here – Michael didn’t know her either. I asked him if he knew his address and he stumbled trying to enunciate something. Within minutes I was throwing a bag together before the ambulance would arrive. The ER was mostly ok. A quick CT scan showed a possible TIA but he’d need a brain MRI. They ordered tons of random tests, most of which I refused. I felt like they were wastes of time and money given the overall state of affairs. Before long we were back in our old room, being greeted by the staff we’d left almost two months earlier. They understood why I was refusing so many orders. Elisabeth came and stayed awhile. Then we were alone again in our space, waiting for the MRI. Ten hours after we arrived, the nurse came for him and I tried to close my eyes. Twenty five minutes later, the nurse came back and told me the tech refused to conduct the test because Michael had vomited. I knew he immediately that he’d tried to clear his saliva and brought up his meager dinner. The next thing I knew I was deep in the bowels of the hospital, being led to the MRI room. I was almost certain Michael would be ok and we needed to verify what was happening in his brain. The technician was sure he’d vomit in the machine, aspirate it and die. He said if I wanted it done, I’d have to stay and watch. I explained everything to Michael who seemed to sense the situation and said he’d be alright. An utterly inappropriate and surreal experience but there was no one around to refute it, so there I stayed and watched the test, heart in my throat.

The test results were bad. There is evidence of a TIA and indications it wasn’t the first one. No one ever told us that whole brain radiation could be a precursor to a mini-stroke but does it matter now? There is also spinal disease progression in two places, one new. Our oncologist says if he can maintain his current status for two weeks she’ll try another Keytruda infusion. But he hears that as having two weeks to live. All of our friends working on the cancer floor come to see us. And then we go home. He goes to sleep while I sit exhausted and paralyzed by sadness. We don’t go back upstairs.

Michael cannot wrap his mind about what’s happened. We talk and cry – he calls me his baby, like always. But this isn’t like always. He doesn’t have the energy to do what’s required of him nor the resignation to accept that this long struggle is coming to an end. A decision to call the treatment off will be mine. I think and think. When I tell him it’s ok to let go, he says, “no it isn’t.” He asks me if I’m jumping ship on him. I realize that this won’t be like the goodbyes in the movies. I’m going to make the call on hospice care. Henry comes back from Guam. Michael has just enough left to be able to communicate with Henry who plunges in to help with things like showers and shaving. Elisabeth visits frequently. By mid-month, it’s clear that there will be very little time left. The final decision comes when Michael who still insists on using the bathroom at all hours of the night, stumbles and falls into the shower. Without Henry, I could never have gotten him up. Virtually the next day, while both kids and I are right next to him, his next attempt to get up fails while the three of us manage to keep him from hitting the floor. I realize that hospice is mandatory and call to make the arrangements. He thankfully, is not in any pain except for psychic stress, which impels him to keep trying to move despite eating and drinking nothing. The rest of us are suffering while parts of us feel awed by his tenacity in holding on to life, even one as dreadful as this one.

May 12, 2017 – And now each night that I still have him, I kiss him and hold him in my lap to savor the easy connectedness we’ve always had since our first day. And burrow into his neck and breathe and hope that in whatever place he’s in, he feels me as he always did and finds comfort. I ache with loneliness in advance.

Every now and then, Michael remembers food and drink. By the time I get it to him he’s either forgotten about it or is unable to manage it.

May 17th, 2017 – It’s not every day you sign your husband up for hospice. Almost two years ago, it was my mom. No more doctor’s appointments or ER’s or bloodwork. Just waiting and watching for death. So today, he drank a Boost and ate a bowl of cereal. Said if he didn’t he’d die. Then he had an awful stomach ache. We try conversing. He said the first thing he thought of Henry was that he was so nice. That Elisabeth had spirit. That I was smart and when he looked at me he saw “my girl.” I told him that no matter what happened it would be ok. He said, “no it won’t.” May 19th, 2017 – M. told the hospice nurse that he still had a lot to do. But he can’t do anything. Tonight I got him to give our oldest grandson his pocket watch with the flashing red light that he so loved to play with – Michael said he loved him. A good memory for that sweet little boy. Our oncologist called and gave me her cell phone number. She’s worried about me. I know how much harder things will get. I’m very afraid. But no nursing home. Not as long as I can take it. May 20th, 2017 – I think of how many years I’ve thought of Monet painting his wife’s death face. Abd now here I sit, looking at what will soon be Michael’s. Both images will be seared into my brain until one day, my brain will blessedly let go. He wakes and says he doesn’t feel good. I explain that he hasn’t been ingesting food or liquid. I offer some and he refuses. I ask if he knows what’s happening. He says, “I guess I’m dying.” I told him I thought so too and that I couldn’t stop it. He’s cold and pulls the covers over his head. Later he is alert. He wanted Henry and Elisabeth. He hugged and kissed them and said he didn’t particularly feel like dying. Everyone cried. He had us call his old friend Brian so they could say they loved each other. We played some music and sang. Everyone was happy for a few minutes. After awhile, he got tired and the kids left. My chair is up against the hospital bed. I keep my hand on his or vice versa. No alone feeling.

May 21st was an unpredictable night. His stomach growled and he said it hurt. He ate a few spoons of applesauce and seemed lucid and understanding of what was happening but I know that will pass. I’m reluctant to start medication as long as he is responsive. Finally, when he continues to mention pain, I give him morphine. A terrible feeling, like I am killing him. By the next day, he was confused again. The hospice nurse came to check his vitals which were normal. He still has a ways to go. By the 23rd getting to the bathroom is too hard. I call the nurse who recommends a catheter. Michael touches my face that day. By the next one, the 24th, he is agitated. An aide comes to shave and bathe him and the nurse comes with the catheter. No more jumping up for the bathroom. It is my birthday. My sister arrives after not seeing Michael for weeks. She’s amazed that he looks so normal. A tearful goodbye to her brother who met her when she was a teenager. I’m getting birthday greetings and my old friend Joanne drops off enough cake for an army. All I can think is, don’t die on my birthday which finally, finally ends.

My kids and I hold the vigil. By the 26th, the nurse can’t find any blood pressure. His breathing is diaphragmatic. He’s not supposed to be here but yet he is. We watch in wonder, in disbelief, in despair, in awe. We, who know him best, sense the last desperate attempts he’s making to not let go. In the badly named “fight” which people call cancer, he is the ultimate warrior. Frightening and unforgettable. My dad quietly turned away from life. This is a whole other thing. On the night of May 27th, my kids go into the living room to crash on the couches. I am in my recliner, waking to administer the meds which will stop what is now called end of life secretion sounds, but which I’ve known as the death rattle, a miserable sound. The drugs have improved.

May 28th, 2017 – 1:19 am – His heart needs to give out. And when it does I have to claw my way through the hospice nurse coming and the funeral home taking him away in a body bag. I know I have to go to sleep now. I’ll hold his hand like I have been each night. This is going to end. My pain is limitless. I haven’t forgotten any of the bad. But I remember all of the good. My best friend. My considerate and exciting lover. My safe place. Those big shoulders and the arms wrapped around me. My hand holder in the movies. The one who knows me better than anyone ever did. The one who never judged me. All of it leaving with each gasp, each twitch beside me. The emptiness ahead. My starving body missing touch. I’m going to try sleeping. I could wake up to the wasteland. I’m going to try sleeping. I’m supposed to survive. 4:28 am – He is still breathing. Just now I thought he tried to verbalize something. Oh what is happening in there? 4:37 am. More meds for breathing. 6:40 am. Michael died in my hands. I run to wake the kids so they can kiss him while he’s warm. They go back to the living room. He’s gone. I make the calls. I stay with him through the next parts. The kids think I should leave the room but I don’t. I was able to kiss his cold lips and face. I didn’t know I could do that. 8:08 am. I am a widow. I am no longer a caregiver. For the first time since 1989 when my dad died.

Cancer – Now What ? From Partner and Caregiver to Widow – Chapter 14 – Be 278

“Maybe I’m Amazed– Paul McCartney

Of course I can only speak for myself. I’d turned 65 four days before Michael died. Nothing, not the grief, the anxiety, the fear, the fatigue, the terror, the love, had made me forget to do the management of getting myself on Medicare and a supplemental insurance plan. I’d also taken care of organizing all the documents I’d need to separate my beloved husband from the bureaucratic details of his life. All that was missing was his death certificate. Life, at least mine, had prepared me for how to do these things that so overwhelm people in their most dire moments. I’d had more than my share of illness and death, up close and personal, since I was a little girl. I started being afraid of death, of being alone and abandoned, when I was about four years old. That’s the demarcation point from feeling safe, when I’d remember my mother’s first lengthy hospital stay, which unnerved me so badly that I was terrified of leaving her for school, always worried that my regular teacher would be absent, and that when I returned home, mom would be gone. I wrangled with those fears all through my childhood and had plenty of practice surviving losses from the time I was twelve. Deaths of a baby cousin on my twelfth birthday, family suicides or attempts, along with the loss of my grandfather happened by age eighteen. Then mom, who’d stayed unhealthy most of my life got cancer. She survived, but I was really insecure. My emotions were too big and unmanageable. Somewhere along the way I developed an intellectual override skill that allowed me to transcend that internal chaos so I could function. My gift and my curse. I was often observing my behavior while I was in it, like a reporter at the scene of a crime. Fortunately, the ability to detach didn’t destroy my ability to be fully engaged, though, making me a curiosity, even to myself. Michael came along when I was twenty. Longevity seemed to be the genetic legacy on both sides of his family. I felt lucky to have fallen madly in love with someone who’d cry at my grave. As they say, the best-laid plans…

Mom and dad both got cancer in 1989. She survived hers while dad’s disease progression was only three months long from diagnosis to death. I was thirty eight. Dad had a simple world view – you were born, you grew up, married, worked, had a family and died. He was only sixty seven when he disappeared. Back then, I thought that was a full life. Fast forward to 2017, when Michael died at the same age. Those ensuing years had significantly changed my perspective about lots of things, most especially what “old” meant. In 2011, my kids threw me a huge 60th birthday party, so well-attended that I had to help them pay for it. A multi-generational event, I still felt young, vibrant, well-loved and deeply ensconced in a diverse supportive community. A scant year later, I was facing the probable loss of my seemingly invincible partner, diagnosed with an orphan cancer, rare and virtually always lethal.

During those next five years of cancer life, Michael and I grew closer and more intimate than ever. Always aware that his clock was ticking away, we were determined to squeeze as much time together as possible into whatever we had left. Our world got very small as we focused on each other and our family. We traveled when we could, sharing special experiences and making memories for me. We lived through some terrifying moments. When things improved we proceeded with our plan. During that time, my mom, my brother and my dog died. I became estranged from my older sister. In quiet moments, I’d ponder my future when Michael was gone. But except for notes to myself, relegated to the silence of my journal, I pushed straight ahead. During the last four intense months of Michael’s physical devolution, however, staying in the present became more and more challenging for me.

March 17th, 2017 – Here I am degrading by the day. I have no life. My body feels dreadful. What is a reasonable length of time to keep trying? For both of us? March 21st, 2017 – Sometime it’s all I can do to keep my head from exploding. March 24th, 2017 – My heart is so broken. Too much loss, too much loss. Will I just die? Anything is possible. March 30th, 2017 – Will I ever have a life of my own again while I’m still healthy enough to enjoy it? Another trip? Another class? No clue. April 13th, 2017 – Lying together in our bed although I’m so afraid, of now and the future. Thinking of being sad, being lonely. Trying to imagine the emptiness of future holidays. A big blurry future. April 17th, 2017 – Thinking of the future as little as possible, but still. What will my life be like? How many more years do I have? Will I be able to travel? How will it be to function by myself without the cushion of knowing I have someone just for me? April 22nd, 2017 – Michael and I always wanted to take a long train trip. We never made it. Will I do it on my own? April 24th, 2017 – Life is passing by. I live in tiny chores. I know I’m doing the most significant thing in my life. But what about that train ride? A new city. A beach. Anything but here. Just for a little bit. May 14th, 2017 – I’m exhausted. I feel ill. How will I get through this? What’s on the other side? May 16th, 2017 – How will I re-enter the world? Hello everyone. I decided to give over my whole life to Michael for the past 5 years to squeeze whatever I could from our time? Now I’m alone. Any room for me?

And then he was gone. His oncologist immediately told me I was at high risk for death from the previous months of physical and emotional degradation I’d endured. I was so exhausted. I missed lying in Michael’s arms but I slept in our bed. I was going day to day. I needed lots of silence inside of me. But Henry was returning to Guam so we attacked some of the heavy chores that I couldn’t do alone. Within a week, we’d emptied Michael’s closet, his drawers and the tall shelves above his desk. I thought I’d faint from fatigue, while I struggled with the sense that I was rapidly throwing his life away. He wasn’t his stuff. But it felt terrible, only one week gone which felt like forever.

June 3rd, 2017 – I miss his brain when he was whole. I know we said all the important things many times but he wasn’t himself for weeks before he died. I can tell that parts of me were adjusting inside. But I still had his body and I could care for it. I could hold him and feel his warmth. I’ve had what there is to have from love. How far will I have to go without intimacy? Where will the peace come from? June 4th, 2017 – I can hear Michael’s voice. But I can’t feel him the way I can feel my mother. Maybe that’s because he was so psychologically damaged when he died. Will the real him be released somewhere into the ether? Otherwise, it will be me in a quest to conjure him for the rest of my life. June 5th, 2017 – Happy 68th birthday, my beautiful boy. The first of many special days when I’ll feel a hole by my side. My empty hand. The perennial ache. All structure and landmarks are out of my life. Cancer and caregiving have been my structures. Nothing to go back to now. I have to reimagine myself from the scraps left behind. Feeling daunted. We knew there would never be enough time. But you’ll be with me forever. You promised.

The days passed. I filled them with small activities. I’d decided that Michael’s celebration of life won’t happen for months. I wasn’t ready, nor was I interested in anything traditional. I was going to curate his life as an exhibit, with music and a slideshow and no speeches. What I show will speak for itself. I returned to the pool and realized I had months of hard work ahead to recover from my de-conditioning. I saw my doctor. I’m wasn’t dying. I made an appointment with the orthopedic surgeon about my knees and was informed that I had to wait a year before replacement. Apparently grieving people don’t recover from surgery as well as happy people. So I hobbled ahead.

In mid-June, I began sorting through the monumental task of how to plan for the December event, my hours accompanied by Michael’s IPod music of 2502 songs. On our road trips we listened to these all the time on shuffle, so I was certain I’d never heard every song. Now I was determined to hear them all. And suddenly, lifted by the music, the Michael of before came flooding into me like an avalanche. As I swam my laps, his face bobbed before me like the disembodied Cheshire cat from Alice in Wonderland. His presence was everywhere, a luxurious comfort, a warm velvet throw, an interior volcanic eruption, a primal comfort which was somewhat like floating on a waterbed. I was astonished but grateful. Whatever alchemy was at play worked for me. I released my thoughts in a torrent of daily letters to Michael which I title “P.S. I Forgot to Tell You Something.” Or, “I’m in Love With my Dead Husband and It Feels So Good.” There are hundreds of them.

I made regular appointments with a therapist. I spent time with my family. I went out to see the solar eclipse. I saw the movie Wonder Woman, the first film in months. I began to have lunch dates with friends. I dreamed that I had a tattoo – I woke from sleep and drew it as I dreamed it, a cosmic message that defined Michael and me. I, always a needle-hater, went and got inked.

I was still in passionate love with my husband. I found my way to that every night when I entered the cocoon of our bedroom for so many years, the shrine as my daughter laughingly called it. Often, I woke with my heart pounding, convinced that my vivid intimate dreams were real. Who’s to say they’re not? Each night, I found myself calling out his name into the darkness before I fell asleep. I am completely unashamed of myself. In September, I planned the longed-for train trip to Glacier National Park, on my own as an independent woman, albeit a slightly crippled one. To my horror, the west was a blazing inferno that summer and the south was drenched by hurricanes. A scant two days before departure, I canceled the Glacier trip and re-routed myself to the Flagstaff-Sedona area, a spiritual place where I could establish my balance and be brave, striking out on my own and living the full life Michael wanted for himself, for us both. I found that a well of strength I thought was gone was still alive in me, buoyed by the powerful, mystical bond we shared for so many years. I never thought about things like eternal love. But evidently such things do happen, much to my somewhat baffled mind. Apparently this was going to be the foundation of my life as a widow. As the song goes, maybe I’m amazed.

That December of 2017, I held Michael’s event at our local Civic Center. I knew it would draw hundreds of people from all the parts of his and our life, family, old friends, his music business family, our political life, his teaching career and a wide generational swath of those who’d found a warm, loving safe space in our home through the years. No speeches were made except for my short interview with the local television station.

Three years have passed since that event. I’m still writing Michael letters although not every day. I still call out his name every night before I sleep. I started my blog on January 1st, 2018. I had no clear idea of what I’d have to say other than at some point, to write the book Id called Be 278, the words I spoke to Michael after reading the dreadful survival statistics on that Merkel cell cancer website when he was first diagnosed in 2012. Sprinkled through my website are the 13 previous chapters of this tale that I needed to share. To honor Michael, to help anyone feeling alone during their cancer times, to illustrate that we all share common bonds and that we who survive, can live at our best despite the grief that never leaves us. I got to Glacier eventually, along with having other rich adventures during these past three and a half year. Covid has been a damper but I hope to get to the other side to resume my fuller life. Michael is still with me, sometimes so ablaze I can barely draw air. I’m forever grateful that we found each other. And so, finally, I lay this story down and go back to the more joyous tales of the past and the new ones of today and hopefully, tomorrow. Until later, my love.

Minutiae

When I wake up in the morning, I usually check the weather forecast before I do anything else. I can think about how to dress for the day, whether I’ll be in or out, pretty mundane stuff. Since the pandemic started, I pay more attention to weather than I did before. I’m lucky that I don’t suffer from seasonal affective disorder and mostly don’t care if it’s sunny or gray. These days, though, I’ve been pushing for as many hours as I can get outside. I like the inside of my house but with other options so limited, the freedom of open space means a lot. I saw a winter weather advisory posted for tonight, snow and possibly ice, with temperatures hovering around the freezing point. I’m alright with cold but as I age, the idea of crashing on a slippery sidewalk doesn’t seem as benign as it once did. So I layered up and headed out into the cold just in case I don’t get out tomorrow.

I headed over to what once was a dirty creek that runs through the middle of town. Called “The Boneyard,” back in the old days, you had no clue what might be dredged up from that stream, which eventually was transformed into a lovely basin surrounded by a nice walkway. Lots of waterfowl, turtles and fish can be found there, along with miniature waterfalls cascading over rock formations and naturalizing plants as accent features. Right now the water is low after a relatively dry summer and fall. I was annoyed to see how much plastic and garbage had been thoughtlessly discarded into the stands of wildflowers along the shores of the water, not to mention what’s floating on the surface. Do people tune out all the conversation about the current threats to nature and the importance of conservation? Evidently.

In addition to these tables, benches dot the pathways that encircle the basin. The large apartment complex on the west side of the lot is only a couple of years old. I was disappointed when it was built. The ambience of the site is disrupted by its presence, especially at sunset when even in the midst of an urban area, you could be treated to a broad vista of color now blocked by the sight of brick walls. Business concerns instead of aesthetics. Back in April of 2017, this place was the last outdoor, natural setting Michael experienced before dying the following month. I don’t think he would’ve liked the building either. But life goes on and there isn’t much that stays immutable.

When I’m out and about, I’m always noticing changes in the community. Right now, there’s a strange combination of closures of places that have been around for years, along with new construction. A vestige of my job. I hardly ever think of myself in terms of the work I did for over 30 years. Although I had a profession, I was more about who I was than what I did. Still, a big part of my time was spent as a commercial property assessment official, responsible for determining the value of the buildings and land for every business structure in my city. Getting those numbers right meant establishing a fair and equitable way of determining local property taxes which are key in supporting critical community services like police and fire departments, schools and the park district. Those taxing districts are about as close as people can ever get to knowing how their tax dollars are spent. The habit of noticing what’s happening out there is still a part of me whether I’m conscious of it or not.

The above photo is of a really ugly building that occupies almost an entire square block in the downtown area of my city. An empty building and a vacant lot had been sitting there, an eyesore for a long time. So I guess it’s good news that there’ll be a new revenue source, finally, even though it’s so close to the street that I can’t see room for an inch of green space. Just east of this place is what’s called an historic neighborhood noted for its old school unique houses. I suppose design and architecture are a matter of preference. It would seem I’m not into your average rectangles and such.

More my style.

When I started writing this blog three years ago, my primary purpose was to create a history of both Michael’s and my life, both individually and together, as a gift for my kids and theirs. The avid interest we both shared for history, along with my long-delayed desire to write just for the love of it, finally coalesced in the new space I found myself occupying six months after his death. Current events and random impulses have frequently shifted my focus away from my original intent. What some might view as critical moments in the combined history effort have been sloughed off to the corners of my mind, popping up intermittently only to recede again as I get distracted by another thought. Minutiae. In the end I guess we’re all just the total of small moments in time, which taken together, make our lives. All this thinking about buildings and my job reminded me of something I did for awhile back in the early 80’s that I haven’t thought about in ages.

This house, constructed as a private home by loving parents for their artist daughter, eventually became the home of our local county historical society. And for a time, I volunteered as a docent there, my primary role being the person who explained the customs of the early 20th century in this mansion with its ballroom, butler’s pantry and its twenty two rooms to visiting classes from local schools. After our history lesson, the kids were seated in the formal dining room at the long table where I served them cookies and lemonade before they departed. I have strong visual memories of the house, its wallpaper, the large copper kitchen sink, and especially the blue and white tiles around the fireplace, painted by the daughter who eventually occupied the house with her husband until the Great Depression changed their fortunes. I believe the tiles were painted in 1907. Her other work, primarily china which she fired in her own kiln on the third floor of her house, has mostly vanished.

Thornburn School, ca. 1900

I hadn’t thought about that little slice of life in a long time. I did a lot of different things back in the 1970’s, when I was floundering around in my work life, my only true anchor being my relationship with Michael. I worked for a time on the top floor of this old school building which housed the local park district offices. I was the assistant office manager for a program called the Youth Employment Agency, which attempted to place teens in paying jobs during summers and after school. Under the park district auspices, I also worked to develop a youth center, a safe drop-in facility with activities and programs to deter juvenile crime and provide support for kids in borderline crisis situations. These jobs remind me of squares in the virtual quilt of my life, smallish but nonetheless part of how I came to be the current me.

Back when Michael was getting ready to run for his first crack at public office, I remembered that I too was on the ballot. For a couple of terms I was an elected precinct democratic committee person, a representative for the Fifth Ward, one of seven in my town. I think I knew the names of virtually everyone who lived within my jurisdiction and many of those people personally as well. I kind of forgot that I played a pivotal role in local elections, was Michael’s campaign manager, treasurer for a few other campaigns, and that when Michael was a city council member, he recused himself from voting on my salary for my job as a city assessment official. More life details that have slipped to the back of my mind.

I unearthed these rulers the other day – they’re left over advertising treats for one of the school fundraisers I headed up when my kids were in elementary school. I think Michael had plans to do some creative art project with them. I next recalled that I volunteered to head up the all the major annual fundraisers at my kids’ school, like the Walk-a-Thon, the Chili Supper and the Teachers’ Special Projects fund. Those events were a lot of work while holding a full-time job, parenting a couple of kids, being a wife, a daughter, a sibling and a friend. Huh. I just haven’t thought about that stuff in such a long time. I was on the school site-based management team and the hiring committee for a new principal as well as working for the PTA. An activist parent. But as the times moved along, so did I along with the memories of those days. At least those ancillary events which my kids were too young to recall. So now they’ll know. Absent this musing time, when I’m having this opportunity to cruise along, driving around in my car, listening to music, looking at the place I’ve lived for over fifty two years, letting my thoughts wander, I’m not sure I’d have unearthed these random parts of my life. The minutiae. Maybe that’s all we really are in the end. I’m going to have to get cracking if I’m going to have the time to dig through this decades-long stash of experiences. An interesting journey, to say the least.

Gray Sunday Ramble

For the most part, today has been an indoor day for me. Although it’s almost mid-December, I’ve spent most of my pandemic time outside in my yard and garden. Temperature-wise I run warm. When I’d complain to Michael that I was really hot, he’d always reply, “ you’re telling me.” That’s one of the lifetime gifts he left me. But aside from chasing rotund squirrels away from my bird feeders and admiring my unexpectedly vibrant snapdragons which refuse to die, I caved into the cold temperatures and stayed inside.

I’m actually ducking what is my most pressing personal assignment that I started last night, writing the final chapters of my story of Michael’s disease. I’ve reached the last few months of his life. I need to finish. I wanted to write it for two primary reasons. One is to honor the remarkable effort he made to stay alive in the face of an incurable cancer. A friend of mine recently reminded me that he’d had a dermatology appointment during Michael’s treatment. The doctor told him that he never knew of any patient who’d survived more than six months after being diagnosed with Merkel Cell carcinoma. Michael got five years. My second reason for writing is to inform other patients of what is possible that seems impossible, as well as to tell the truth about what life is like during the most challenging time a family can face. I pore over my journals, not that I don’t remember everything with utter clarity. Yet, the progress is painfully slow and halting. Last night I eked out two paragraphs. This morning my mind was again unready. Partly that’s because I’m doing what I said I wouldn’t do when I started this blog – self-censorship. I think that’s because of feeling like times are so oppressive due to the pandemic that I don’t wish to add extra pain to an already difficult psychological moment. Then there’s just the weight of the loss which is my daily companion. I’m promising myself to complete this writing before the year ends. In the meantime, I let my mind roam this day, from one random thought to another.

I surprised myself this morning with a random memory while in the bathroom getting ready for my day. While standing at my sink washing, I suddenly remembered a scene from the film Atlantic City, a movie starring Burt Lancaster and Susan Sarandon, made in 1980 and directed by Louis Malle. I think I saw it twice. A particularly unforgettable moment was observing Susan Sarandon bathing in her sink next to her window while Burt Lancaster watched from across the way. I have no idea why that image popped up in my head. Just a flash of visual memory. I’ll never understand how that works. Random phrases from movies and books that get stored for no reason that I can recall.

Last night as I scrolled through the guide on my television I saw that Back to the Future was listed. I immediately was mumbling “flux capacitor” to myself. I wonder how much space in my head is occupied by phrases and visuals that are now part of me, although totally irrelevant to my daily life. Ah well. Another thing I’ll never understand. A byproduct of my preparation for the day’s musings made me laugh as I stood in front of my mirror, not looking remotely like the erotic Susan Sarandon. Years ago when we remodeled our bathroom, Michael placed the medicine cabinet at a height suitable for his 6’4” frame. I told him that was great for him but that one day I’d need a ladder to see myself. That day is approaching fast. Maybe staying away from mirrors is a good plan for the future. There’s something to be said for shrinkage.

Today when I came downstairs, my son was in the kitchen. I started a conversation quickly because soon he will be off to another exotic location for his biology field work . I guess I want to stuff as much verbal exchange as I can into these moments before I go back into silent quarantine mode. He turned to look at me, noting that my morning energy level seemed to be eleven on a scale of one to ten. I think that’s a fair assessment. Ever since I was little, when my eyes snap open, I’m going at full speed in my head. I’ve never been a person who needs a slow transition from sleep to wakefulness and I don’t ever drink coffee which might make even me too much for myself. The fact is that when my energy level wanes too much, I’m not sure I want to be around any more. Full speed is what suits me although I understand I can be an unnerving companion. When my longtime friend Joanne and I attended twice-yearly classes for our job, she had to sit away from me when we took exams. She said my intensity made it hard for her to focus. Oops.

I had a lovely and very random experience yesterday. Last year after my knee surgery, I was waiting to see my orthopedist when I recognized a woman I hadn’t seen in over 40 years. Shed dated a very good friend of mine with whom I’m still quite close. We had a nice conversation, exchanged contact information and became friends on social media. We are like-minded and have had a virtual dialogue going on since then. She sent me a message yesterday saying she was going to drop off a 2021 calendar for me that was made by her friend who enjoyed nature photography. I never heard her arrive – the calendar showed up in my mailbox with a warm message packed with well wishes for the winter ahead, and an invitation to hike the farm country where she lives near a beautiful nature preserve. So kind and neighborly. The serendipitous moments in life can be really special.

So tonight was a holiday celebration with my kids, grandchildren and sister. I’ve been so lucky to get through these months of social distancing, able to see my family, with no one getting the virus despite some exposure and subsequent testing. I’ve been able to assist with the kids and provide emotional support to everyone. But I’m one of those moms who was happy to relinquish cooking to my more gastronomically engaged husband except for my few specials and holiday treats. After he was gone, I ate more like a kitchen novice than an experienced cook and was delighted to mooch meals from my foodie son-in-law when I could. In the past year or so, and especially during lockdown when my son was unexpectedly here a lot, my submerged food mothering skills have made somewhat of a comeback. I have so many memories of my mother and grandmother’s signature dishes. I still want to give my kids those homey comforts in addition to making some memories for the littles. So I hit the kitchen today to make a mouthwatering, tender brisket surrounded by soft sweet apricots and onions which just melted in your mouth. And cookies. My son-in-law made butternut squash soup, homemade bread and potato pancakes with fresh applesauce.

Sometimes I’m shocked that I can still make stuff that tastes good. My mom gave up cooking when my dad died and for years, we all pined for our favorites from her. When she decided to try again, her cooking mojo had disappeared and we were all sad though we didn’t tell her. Tonight’s meal was fun and delicious. I need to remind myself that it’s more about family fabric than the food and to stop being so lazy.

In other news of the minutiae of today, I’d been really excited that Roger Federer had regained control over his signature design from Nike and was releasing a new group of hats through his current clothing outlet Uniqlo. I went online the day of the release to find the website crashed and a note which later explained that the entire worldwide stock had sold out in ten minutes. I guess I’ll have to wait for the next batch.

Uniqlo advertisement

Lastly, on this most meandering of days, I added another rock and shell-decorated paving brick to my collection. I’m intending to surround all my garden beds with these when I feel like digging trenches in the spring. I hope they’ll be here long after I’m gone. So that’s it, people. Just a gray Sunday ramble. I forgive myself for not being profound every day. Breaks are important for your mental health.