“The hurrier I go, the behinder I get.” Lewis Carroll – Alice in Wonderland.
Down the rabbit hole indeed. Yesterday I was fortunate to receive my first dose of the Covid vaccine. Iwas a little anxious because I know there have been anaphylactic responses to these shots and had read about a doctor in Boston whose only known allergy was to shellfish. He experienced the anaphylaxis. My allergy. So I brought my epipen to the facility and after the injection, was observed for twice as long as most people. Luckily, I didn’t have any issue. Upon returning home, I began experiencing side effects, mild fever, headache, sore arm and fatigue. The good news is that probably means I’m having a proper immune response which made me glad as people over 55, whose immune systems are less robust, generally have fewer reactions than younger people. I’m hoping the supply will be available for my second round as there is still so much virus everywhere. One day at a time. And on a side note, it certainly was strange to see so many people in one place. I wonder what life will feel if we get to a new normal…
Sleep is a continuing problem for me and I’d hoped to get some extra time last night but alas. I woke early. I made a few swipes at catching another half hour, but my son’sname was swirling in my head, makingrest impossible. He’s been off in Peru for the past 10 days, working on a conservation project in the Amazon. I was really anxiousabout him traveling in the midst of a pandemic, not to mention all the potential hazards of being in such a wild climate during rainy season. This is not my first bout of parental angst as his work as a biologist has taken him far from home multiple times. And unfortunately, he’s had some brushes with animals, disease and accidents which have been really frightening. He’s been out of touch for days, on a river trip with no internet access. My mother, whose every negative thought was perceived by her as a portent of disaster, remains in my brain despite my best efforts to kick her out, along with that supposedly prescient contagion she put there. So when I was repeating his name in my head non-stop, I got up to try dispelling the sense of impending doom. I turned on my phone to see that he’d just sent me half a dozen textswhich included the one above, of a gorgeousgroup of macaws. Maybe that’s a positive twist on my mom’s cosmic fears.
Much relieved, I decided to eat exercise, eat breakfastand begin to tackle more of the inside tasks I’d left for wintry days when being outside for too long was untenable. MaybeI was still distracted by my sore armand headache. What I intended to do was put my many photos, which I’ve been sorting for months, into these archival storage units. My daughter had purchased them recently and I got spiffy colored ones with the goal of getting rid of large unwieldy photo albums.
Since my photos are in order by date, I figured this would be a piece of cake. Great space savers, that would mean I could cull more books, which despite multiple attempts to pare them down, continue to sprout like weeds.
Just as I was gettingready to start my task, I got a phone call from a reallydear old friend of mine who’d just undergone a series of significant medical tests. I was eager to talk with her. My friends and I are getting to that age when the transience of time is more up in our faces than it was in our youthful days. We’ve barely seen each other in the past year because of the pandemic. Her news was good and we lingered in conversation.
I grabbed a big binder to look for photos while we chatted, not remembering what was inside. And so my diversion from what was intended began. First out of the box was the photo of my high school sweetheart and good friend Rich, taken somewhere on the shores of Lake Michigan. That was the least unsettling moment of the day.
Next find was oneI didn’t realize I had. At the end of 2014, my mother had suddenly become violently ill with the flu and was unable to transfer from the hospital back to her assisted living facility. When she was admitted to the nursing home instead, there was little time given by her previous home to move out her things. In the midst of Michael’s illness and our attempt to get him into a clinical trial, I grabbed mom’s documents and photosin an essentially haphazard way and evidently scrambled some of her stuff with mine. I found myself looking at my pediatrician’s record of my life from birth to age six while a littlegirl in SiouxCity, Iowa. I saw the date of my smallpox vaccination and my polio ones. I learned that I turned my feet out as soon as I started walking. I remember my shoes, tight oxfords built up on the outside in an effort to correct that problem. That never happened – I still walk that way. I read about inexplicable rashes, trends in my sleeping and eating patterns, and when I reverted to wetting my bed. I know when that was – the first time my mother was hospitalized when I was four. An envelope labeled Renee’s first tooth was there, too, but it was empty. There was however, an envelope labeled Renee’s first haircut, December 1952, age 18 months. Quite a sight. Also stashed in these folders was my birth certificate from Chicago – 8 months later I was an Iowa resident.
I found my first grade class photo. Interestingly, I don’t remember my teacher’s name although I clearly rememberthe one from kindergarten. I remember all my teachers from Chicago. The child I remember best was Connie, the girl with long blonde curls who brought me a May Day basket when we were in this class together. In addition there was my report card from that year. Apparently I was a good little kid. Thinking of the long journey from then to now was dizzying.
Moving on I came to the Dennis repository. He was the guy I dated on and off for a few years in college, in between break-ups with my first true love, Al, and before my friendship with Michael turned into the romance of my life. I really liked Dennis, even loved him as a friend. I have a handful of photos of him.
We’d stayed in touch for manyyears after we’dbothmarried and had kids. He’d moved east and occasionally we’d see each other when he came back to Chicago to see his family. He started out as an architect and then became a veterinarian. He combined the two by designing and building his own vet clinic.I opened the stash of letters I’d saved from him and found a photo he’d sent of himself which had appeared in his local newspaper. Looking at this memorabilia made me so sad. His life which had seemed so full and rich went south. He got divorced, retired in his early 50’s and designed a home which he built himself in Costa Rica. But he regretted that decision, moved back home and tried to buy back into his old vet practice. They didn’t want him. I found out from his ex-wife that he committed suicide shortly thereafter, before meeting his first grandchild who was almost ready to enter the world. I was terribly saddened back then and again, as I revisited these memories.
I tried to stop there, going over to my photo albums to beginthe transfer from them to those storage containersbut I wanted to see what else was in that big binder. Next up was a stack of letters from me to my parents, written over a few years in the 70’s, right after I’d moved in with Michael. I was just shy of 21 when they started and they go on through the next three years. In my real adult life, which I feel truly begins when you pass thirty, I’d begun to see my parents through a different lens than the one I had when I was young. I knew that I’d carried a lot of emotional responsibility toward them that was inappropriate. We loved each other intensely but there were psychological boundary breaches that they were responsible for, not because of abuse or malice but rather because they were underdeveloped, more like peers than parents in many ways. My mom, whose health was always lousy, was in particularly bad shape back then. Two of my letters were addressed to her at different hospitals within just a couple of months.
Reading them was so depressing. I was either trying to bolster and support them, minimizing my own problems, and downright lecturing them as if they were my kids. I think we all wonder about our memories, what’s real, what’s embellished and what you’ve probably forgotten. This habit of mine, writing everything down, makes things much more clear and less papered over by the passage of time. By the time I got done reading those, I was in a decidedly sour place, not helped by my lingering vaccine headache.
I finally hung it up after I flipped to the next page and found this forgotten photo booth strip of my friend Fern and me. I think it was taken when wemet up in Chicago at Marshall Field’s on North Michigan Avenue in Chicago after not having seen each other for a few years. I was married, she’d lived abroad and although we’d known and loved each other so well, there was some anxiety about seeing each other again, especially for her. I remember her saying she was worried that I’d have some old married lady hairdo and betoo mature for the crazy stuff we’d shared. Another sad thing to see. Fern committed suicide in 1988, a few weeks before our 20th high school reunion. I knew she was teetering on the edge as she had been for years. The night before she died, I was urging her to hang on, come home and livewithMichael and me for awhile so we could help her heal. We’d been on this road for years. The last thing she said that night was that the worst thing about thinking about suicide was how hard it would be for the people left behind, and one more I love you. She was dead the next day.
So much forgetting anything done. I’d managed to make messes everywhere by pulling things out to sort in several differentrooms. I decidedto just leave everything.
Photos, comic books, CD storage bags, old comforters and computers, all just sitting there, even more disorganized than before. I went for a walk to reorient myself. Nature always helps.
I feel likemy pile of chores got higher, deeper, wider – take your pick. Turns out that what I thought were my inside things to do are more intangible than what I had planned. I guess there’s always more when you go down those rabbit holes. Michael would say, “ there you go again.” Yup. I guess if I’m anything that would be consistent. As Scarlett O’Hara said, “ tomorrow is another day.”
The past few days have felt so strange. Normalcy in government has returned at the speed of light. The detritus left behind by the previous administration is being swept aside by executive orders. Investigations are underway, ones which will hopefully lead to charges and prison terms. Monumental problems remain but there’s no doubt that after the tumult, uncertainty and chaos of the weeks following the November election, suddenly it’s a new or perhaps an old way of life upon us. I’m trying to get used to it. I’ve been mentally and emotionally ramped up for years. From 2012, the year of Michael’s cancer diagnosis through Trump’s election in 2016 followed by Michael’s death in 2017, I’ve lived on high alert. Like someone on guard duty in the middle of the night, looking for enemies in the dark. The rest of the Trump presidency simply exacerbated that fraught vigilance. Now I’m supposed to ease up. Return to whatever was before. Of course, almost four years ago, I was trying to shape a life for myself, much of which is off the table now because of the pandemic. I’ve been trying to be “normal” all day today, but with the odd sense of a deja vu shadowing me as I moved along. I decided to check back on my previous posts, feeling like I’d litigated this experience before. And voila. I found a post from a few years ago which explained me to me. My normal is the guard duty. The explanation is worth another visit.
The Hypervigilant Life – Fall 2018
I can’t exactly remember when I started leading a hypervigilant life but I’m pretty certain it began around age four. My mom needed a hysterectomy at an early age, just 32, and her hospitalization really scared me. My maternal grandparents came to stay with us to help my parents with their four kids, two under age five. I still remember how tightly my grandmother pulled my hair into pigtails with those little scrawny rubber bands. The pigtails stuck straight out of the sides of my head, making me feel like each strand was being pulled out at the root. So different from my mother’s way of doing them, arranging them slightly to the rear which always put less pressure on my scalp.
My brother Fred, who was eight years older than me, devised a brilliant plan to make me feel better. He would walk me over to the hospital, sneak me in and let me have a visit with mom. So on a warm day, off we went. I remember picking some pansies along the way and clutching them into wilt as we trotted along. Methodist Hospital, which no longer exists, was 1.7 miles from our house. That was quite a hike for a little kid. But we made it, me red-faced and dripping with sweat, just as I respond to hot weather today. When we got to the hospital, Fred was shielding me and pushing me behind heavy curtains, hiding me from the staff. In those days, little kids weren’t allowed to visit. Finally, we slipped into my mother’s room. She was lying in her bed behind the curtains which separated her from her roommate, and although she was surprised to see us, she seemed slow and drugged and just took our appearance in stride. I remember being afraid but she called me to come close to her. As I approached, she said, “would you like to see my scar?,” and lifted her gown to display a long vertical raw line up the center of her belly. I will never forget that sight.
During the next years, I remember lots of worrying. My household seemed to always be preparing for the axe to drop. My mom was sick a lot and that caused me great anxiety. I knew that we needed to be worried about money all the time. My dad wasn’t settled into a stable job. Mom didn’t like my dad’s family very much. Sometimes she didn’t like hers, either. I grew up steeped in superstition and fear. Some of it was just fabricated, some of it felt like tradition and some of it was real. My maternal grandparents had fled Europe after living there in desperate straits for years. My grandfather had been in an early arranged marriage when he was only thirteen, fathering a child when he himself was one. He divorced and married my grandmother, his first cousin. Strange days indeed. My grandmother told stories of hiding in an underground hole to avoid being raped or carried off by Cossack horsemen when she was a teen. After marrying my grandfather, she was soon pregnant. That first baby died of pneumonia during World War I, without his father who had fled to the US in 1913 – it was almost seven years before they were reunited.
After that there was the classic immigrant scrabbling for jobs and income. When looking through census records, my grandfather was described variously as a chauffeur, a carpenter and a factory worker. I knew him as a barber. My grandmother had eight live births and many miscarriages. Three of her children died before age 11, including 2 daughters who died within six months of each other. They were the dominant family in my life. I never knew either of my paternal grandparents- they died before I was born. My mother was hostile to my father’s sister Sylvia, and his younger brother Carl was close to her. They played no significant role in my world. But my mom’s brothers and their families had their own struggles and all their life trials were shared with me by my mom. I learned about stillbirths and mental disorders, polio and untimely deaths. I heard dark sexual secrets. By the time I was thirteen, I was used to analyzing all kinds of situations in terms of their potential disastrous consequences. Every experience was laced with the possibility of tragedy, accidents or misfortunes.
I was observing the behavior of the generations ahead of me and looking for an edge, an angle that would help me avoid some of the potholes ahead in my road. And more importantly, I needed to find my way through what is inevitable in everyone’s life, the unpredictable events that need to be managed, that are an expected part of living.
I decided that using my mind to anticipate, to develop scenarios, to prepare for as many possibilities as I could imagine was my best option. My approach to obstacles became simple – whatever the mountain that rose up in front of me, I would think my way over it, through it, under it or around it. I would try everything. I would be brave. I’d be resourceful. And I’d be ahead of the curve, ready to pounce, no matter which direction would be required. And for the most part, I think that my over preparedness has worked for me. Always being alert, at the ready, can be tiring. But the practice made me quick, responsive and stronger than I ever imagined I could be. I’ve lost a lot of people but I’m still here, still whole. My style helped me be a good advocate and I know that my hurling myself against problems certainly helped me in my most important job, helping Michael stay alive longer than anyone ever imagined.
Now I’m left with myself. I’ve always believed that that’s how we all are in the end. I’d hoped to enjoy the pleasures of my love with Michael for more years than we got, but I knew that we were likely to be apart in the long run. My habits that I honed over a lifetime are still in place although my focus is less intense than it was before. I worry about my kids and my grandchildren but I have more time to think about myself than I have since I was a very young woman. I’m facing my first significant surgery, which is pretty lucky considering my age. But I’m nervous, and as always, am trying to prepare for all possible outcomes like I always have done. But it feels very different to be planning only for myself as opposed to planning for my partnership. I’m in uncharted territory and I’m not sure what to expect of myself now. Will I be as able and as interested in caring for myself as I was for Michael, for my parents, for my kids? Some of the wind has definitely been knocked out of my hypervigilant sails. I know that what’s ahead of me is definitely the shorter part of my life. I’m not, nor have I ever been, the person with the goal of living forever. If anything, I was always somewhat fatalistic. As a college student, I clipped articles that I saved in an “apocalypse notebook.” And one friend in particular, would often greet me as the “angel of doom.” My family was and has always been annoyed by my frequent reference to what I always thought would be my early death. I suppose that was a reflection of what happened throughout my life, so many people lost at a youthful age. But on I’ve marched, pretty robust, but ready for what I always felt was the phone call that could change your life in a second. So I guess we’ll see what happens. Maybe I’ll go old school and use the skills that served me so well in the past. Maybe I’ll be a slacker or a crank. I really don’t know what the outcome of this next phase will be. Stay tuned.
In 1973, after recognizing that we wanted to live alone, Michael and I moved from the communal house on Washington Street into the first floor apartment of 705 East California Street. Just blocks away from our shared home, we’d found a neighborhood where we were comfortable. Our landlord, a graduate student, lived in the attic apartment above us.
But we made one more stop. Before we moved to California that fall, we spent the summer in a house on East Delaware. Our lease on California Street didn’t begin until fall. Some friends who were traveling that summer, sublet the Delaware house to us for next to nothing. I remember they had a waterbed which made me nervous, always worrying that one of our dogs would poke a hole in it. Our private time didn’t work out as well as we hoped as we always seemed to be hosting old friends, or relatives of friends most of the time. The company wore me out. We looked fairly organized in comparison to many of these aimless people who were moving from place to place, looking for a life. One came with a stray collie he’d found, appropriately named Wander, as he was always getting lost. The amount of hair he shed almost cost us our relationship with the folks who let us use their house as we couldn’t keep up with his mess. The arrival of August couldn’t come too soon.
When we started our life on California, we’d knowneach other for two years. We were platonic friends for the first eight months. I’d been in Europe for almost three of those, although we, mostly me, had maintained a feverish correspondence during my absence. When I returned, I had to disentangle myself from the onlyother person I’d ever loved, my first love Al, with whom I’d spent almost three torturous years of being together and breaking apart. That took some doing. Michael, who’d had multiple involvements with women, and was infinitely more experienced than me, was in love for the first time. During that first real year together we were surrounded by roommates. When we were finally alone, we began to discover the realities of each other, aside from the initial magnetic attraction that stunned us both the first night we met.
We were both taking classes at the University, trying tofinish our degrees after dropping out of school to pursue activism instead of academics. We both worked part-time at Record Service, an independentmusic store begun as an alternative to higher priced chains, which was started out of the Illini Union by people with whom I went to highschool. Ultimately as business expanded, the store had moved from the Union, to the basement of the University YMCA, and ultimately to a few locations in the heart of campus town. I had another part-time job as an office worker at a commercial bread baking company.
We were working to raise money for a communityhealth center which honored a woman named Frances Nelson, whose home was its initial site. I was on a committee called Medical Aid to Indochina during the Vietnam years. Both of us joined with a collective of people to produce an alternative community newspaper called the Prairie Dispatch.
We learned how to do everything to publish a newspaper except for theactual printing which we farmed out toa local press. Both of us wrote articlesand learned lay-out. I think my first two columnswere about the ERA and thecampus health center. We had press credentials and covered Richard Nixon when he delivered a speech in Pekin, Illinois.I learned how to develop pictures in the dark room on the second floor of our building. Michael would sneak in when the red light was on, knowing we’d have privacy for awhile.
We worked with a Vietnamvet named Tom who came back from the war in bad shape. He was arrested for stealing computer equipmentfrom the University throughan underground tunnel system. We raised money to get him an attorney who managedto get him a reduced sentence at a minimum security prison in southern Illinois. We were both engaged with activists from the Vietnam Vets Against the War, which we saw as a moral obligation.
Wewere working on lots of different issues, one of which included the environment. Michael initiated a feature called the “Junk of the Week” photo which he found by prowling around town with a camera. We hoped that highlighting the messes would raise consciousness. You might search for him in the photo below.
Neither one of us had any real idea of what we wanted to do with our lives. Michael ultimately became a full-time employee of the Record Service, which in timebecame his first career for 27 years. A political science major with a love of music, carpentry and fixing cars, he was along way from the future his parents had envisioned for him. His family relationship was toxic and I discovered that he had a well-protected inner hiding place where he retreated at the first ding of trouble. He lacked intellectual confidence which I found confusing. And he was a non-confrontational introvert with a hot temper. As much as we agreed on key issues, our styles were a total mismatch. I was well-loved by my family, certain of my mental prowess, extroverted and always ready for verbal joust. With no one else around, we developed friction and did a lot of bickering. I kept trying different jobs as we weren’t exactly financially stable. I worked at a bank for a time, first as a receptionist and then a foreign currency specialist. One of the officers told me I didn’t really belong there and to head back to more education. I also worked part-time as a social work aide at a middle school which was a tough go for me as the kids’ problems seemed insurmountable. A stint at the park district had me developing an employment program for teens along with a youth center. In my journals I write about being tired a lot. Little wonder.
We were really young. I was 22 and Michael was 24. Al had comeback into my life after a fewyearsto say he’dmatured and wantedanother shot at our relationship. I said no, but that was hard for me. I never didn’t love him – he just broke all my trust and I knew there was no way back. That in turn, hurt Michael who would alternate between withdrawing or being aggressively snotty and jealous. One day I was going with a male friend to hear a speaker who used to be head of SDS – on my way out the door Michael slung some verbal arrow at me which was so maddening I turned around to go back and yell at him, accidentally putting my hand through the glass door. Volatility had entered our cocoon. That scared me because I was done with that rollercoaster emotional life. Michael was defensive and insecure, saying if I wasn’t happy, I should leave. We lived in tumultuous times and we felt out of sync with everything. Luckily, that bedrock of friendship we’d built in our beginning, emerged in those dreadful volcanic times, and one or theother of us managed to re-center us again.
We’d each brought our own dog to ourrelationship. In those daysthere were no leash laws so we’d just let themout in the morning. One day, animal control found them. Our very strange neighbor, Jerry, owner of a doberman, pulled a shotgun from his house and tried to stopthe arrest of our pets. We arrived to the news that thedogs were in the pound and Jerry was in jail. Michael lost that famous temper of his and with an equally crazy friend, broke the dogs out along with all the other dog prisoners in the middle of the night, whereupon they created havoc at a neighboring chicken farm. Michael smuggled the dogs to Chicago where my dog Herbie was on the lam with my parents and his dog Harpo stayed with a friend. I was left to confront the police who figured out who must’ve done the deed as our dogs were the only ones who weren’t strays. I was left to talk my way out of everything as in truth, I’d done nothing wrong. Mellow Mike. Oh my.
So we went through a lot of our first growing pains as a couple on California Street. I painted the bathroom a hideous shade of pink. I started cooking and trying to knit. I made a scarf for Michael that somehow was nine inches wide on one end and three at the other. We traveled together and separately to prove we were whole and equal individuals. I still like that we did that. We never said the other one was “our better half.” We camped in Indiana and swam naked in cold lakes. I went fishing with friends in Minnesota while he went whitewater rafting in Wisconsin. Once when his father broke his leg, he went up to Chicago to help his dad in his advertising specialty business. It was lucrative but soul-deadening. I wrote him support letters and missed him desperately when we were apart, even when I wanted to strangle him sometimes. He was slow and I was fast. That never changed. We were always tangled together in our bed and sometimes I woke to find we were making love in our sleep.
I think the worst thing that happened during thatyear was thatafter we got the dogs back, Herbie bit our paper boy. His parents served me with a summons to appear in court. After wrangling with Herbie’s issues we decided that she wasn’t a safe pet and decided to bring her to the humane society. I couldn’t go because I was so devastated. I made Michael go. But I was beyond inconsolable and he went back the next day to retrieve her. When he came home, he told me she’d already been chosen as a watch dog for a farmer in a community about 30 miles away. I never really believed it – I thought he was trying to assuage my grief although he swore up and down that he was telling the truth. That was 1974. My younger sister had moved here to go to school. We were about move again in the fall and I had another part-time job coming up. I knew I was going to get a new puppy after I let some time go by. Michael and I were still exploring ourselves. We’d been living together for two and a half years. We still weren’t ready to make a lifetime commitment. Goodbye California Street. Upcoming for fall of 1974 was 909 East Oregon.
This evening, I watched thesolemn memorial ceremony honoring all those who’ve lost their lives, their families’ lives, to the still-raging Covid virus since last year. TheCapitol and the National Mall are fortified by thousandsof 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 emotionalmoment 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 madeof 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 administrationof who is generally agreedto 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 examplesof 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 experiencedthis pain. Even before the advent of the pandemic, life exacted its tolls from people. Illnesses, accidentsanddeaths. 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 willcontinue. Tomorrow we’re starting over. I think of the magnitudeof 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’mon 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 allthis 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.
I remember the first time I noticed lotsof 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 resentedmy 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 allfour 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 nevercomplained 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.
These were my twoprimary 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.
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 versionof 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 theplace was clean. I over-achieved. I did the whole working mom, staying ahead of the housework thing for many years. An organizedenvironment helped my brain. Life for me was comfortablethat way. I liked being in my soothing rooms.
By the timeour kids were gone, Michael and Ihad 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 ina 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 likethe dust I saw at my mom’splace all those years ago. Have I crossed the invisible line between being young enough to manageandold age when you can’t? Did my mom notice her dust and decide she just didn’tcare about it any more? Eventually, she stopped paying attention to otherthings 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 willlook 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 thelook 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 thedust. I’m sure I’ll get to some of itsoon. I don’t think I’m at thepoint 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 thanthe ghostsof 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.
Odd that the personwho comes tomy 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 probablyhad 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 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 moststressful 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.
Ilearned 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’tsuppose 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 personwho 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 efforttooverthrow 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 presidentialconventions, 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 Guardtroops 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’twon the popular vote in this country in decades. But this time, despite the anachronisticelectoral 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 thevirus. The ever-mutating omnipresentvirus. So much unnecessary loss of lifedue 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.
I used tobe 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, shewould tell me how annoying it was when we’d chatted a bit in the dark, and then I’d say goodnight, roll over and immediatelybegin 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 theexact 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 administrationfinally ends, the threads of life before the madness can be collected and pulled back into something resembling a more recognizable facsimile of democracy. It’llbe 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. Sometimesa 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.
Because I am so tired from the politicalstress, the pandemic and otherreal 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 manybooks as I want to and have abunch 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 readmore that are funny.Thethree above mademelaugh outloud. 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 mesad, 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 likeidea of having aspirit 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 withwhom I used to be very close. Our relationship ended over five years ago, leaving mewith 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 justwish I didn’t have to rememberall 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 onMarch 4th. I don’tunderstand 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.
So then I went downthese two science rabbit holes about which I’m completely unqualified to say almost anything. The DNA methylation is basicallyabout changes to our DNAcaused 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.
Forawhile this evening I was trying to rank my top five songs by TheRolling Stones, TheAllman Brothers and Little Feat. Why would anyonecare about that but me? And for my daily dance party which I’m substituting formy sorely missed swimming, I was thinking that JamesBrown made me move thefastest. 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 preparedfor 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.
The new year beganwith an icestorm. I’ve seenworse. Ones that caused power outages for a week with everything in the refrigeratormelting andsodden, lots of candles, flashlights, layers of clothing and fourfeet 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 thatin addition to the 140 Republican representatives in the U.S. House there are now a dozen plusU.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 beentogether for seven years when we started trying and felttruly ready. But it didn’thappen. 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 andshortly thereafter we gotlucky. We canceled all the fertility treatment appointments and waited to getthrough 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. Ourbaby 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 hecame 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 especiallyme, 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 theAldrich Guest House which was bothlovely 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 theroad from the Mississippi River and a few which made for a lovely stroll and view. The Galena Riverran 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 thefirst 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 museumsincluding thehome of Ulysses S. Grant whose hometown was Galena. Lots of pottery shopsand art galleriesfind their way to towns like this which draw touristswho are likely to spend discretionary income on one of a kind creations. Many places were packed with drool worthyitems. 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 aroundthrough 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 outof the Aldrich Guest Houseand into the dingier more affordableGrantHills 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 acrossthe table at me. I recognizedthe 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 comeup with anothergood memory for tomorrow.
On this afternoon of the last day of December, I’ve tried tofind an appropriate wayto assess this mostchallengingyear. 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.
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 eachpassing 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 March11th, 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 wedidn’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 quarantinefor 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, stupidityand 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 formany 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 inequitiesin our judicial system. I worried about the virus becauseof my age but in the end, I wentto the streets too. I’d spent a lifetime protesting and if I got sick, I knew that principles had to comefirst. 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 sonand I took a onedaytrip to the place in Michigan where our family had shared so many happy times. I felt revived from the privilege ofimmersing 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 toolong, at last there’s hope for a return to somekind 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 extendedfamily for the first time in decades. But it’s the rightthing to do.
And now winter is here along with more waiting. Waiting for January 20th whena sane man becomes president. Waiting our turns for vaccinations. Still wearing our masksand being careful. Grieving forso many dead and their surviving families. Trying to stay patient and hopeful for a chance at a wider life, while grateful forbeing fortunate so far unlike many others. Glad to turn the calendar page to 2021. Tonight there is the most beautiful moon. I’ll keep looking at the beauty around me. Find it whileyou can, where you can. That’s about as far as I go with resolutions. Happy New Year. And thank youfor journeying with me.
“For you I’d bleed myself dry.” Yellow by Coldplay
I know that so many peopledon’t have homes, not to mention the countless others who do have shelters, but daily, approach them withdread because of what’s waiting inside. The bones of my big oldhouse in early spring havealways been a welcome, heartwarmingembrace 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 homeafter our 32 day stint in the hospitalwas the single most frightening day of my life. I’ve bornechildren, 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 homeand mine as well.
My fear was matched by Michael’s confusion. He was exhausted, his days and nights mixed up and theomnipresent 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 anduncomfortable 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 thoselines as I did with myparents 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 thinkus through whatever is ahead. While Michael slept, I researched. And I considered the hypothalamus.
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.
We were on our own untilMarch 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’mpulling 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 forhim, 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 fora hospice recommendation but they thought he looked pretty good andshowed no new deficits. They recommendeda stomach feeding tube which Michael agreed to, stating thathe wanted to live. They think the first Keytruda infusion is holding the cancer at bayas 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 thetime 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 normalconversation 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 becausehe feels powerless but won’t see anyone if I’m not there. All technology overwhelms him. We try practicing cognitive skills with the newspaper. Thelast current event he can recall was that James Comey was fired. Scans are scheduledfor theend of the month. Henry is coming home before he leaves forGuam. I dread his grief. Michaeland 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 inme 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 amnumb. 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 the5th 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 withhim 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 eata 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 outdoorbasin 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 squeezingwhat 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 somegood daysin 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 comingfor 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 mewhy 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 timeand money given the overall state of affairs. Before long we were back in our old room, being greeted by the staffwe’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.
Thetest 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 wraphis mind about what’shappened. 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 noweach night that I still have him, I kiss him and hold him in my lapto savor the easy connectedness we’vealways 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 achewith loneliness in advance.
Every nowand 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 andwatching for death. So today, he drank a Boost and ate a bowlof 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 hesaid it hurt. He ate a few spoonsof applesauce and seemedlucid and understanding of what was happening but I know that will pass. I’m reluctant to start medicationas long as he is responsive. Finally, when he continues tomention pain, I give him morphine. A terriblefeeling, likeI am killing him. By the next day, he was confused again. The hospice nurse cameto check his vitals which were normal. He still has a ways to go. By the 23rd getting to thebathroom is too hard. I call the nursewho 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 nursecomeswith 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 brotherwho 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 turnedaway 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’veknown as the death rattle, amiserable sound. The drugs have improved.
May 28th, 2017 – 1:19 am – His heart needs to give out. And when it doesI 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.