Be 278: A Cancer Journey

Chapter 1

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When I was a child, I remember the conversations at family gatherings when the adults invariably turned to the topic of health. Theirs, or that of friends and family. So boring. Endless droning about digestion, diabetes, heart disease and of course, cancer. My mother was especially talented at grisly descriptions of carbuncles, appalling surgeries, amputations and unexpected deaths. I tried to tune it out. All of this stuff had nothing to do with me. But the truth is, my mother was sick a lot, beginning in my early childhood, and continuing throughout my life. Anxiety about potential illness became my internal companion as the litany of problems expanded. My dad too, developed his own physical issues. By my late teens, I was always afraid.80BAEE96-21EB-462B-8C87-6B0D4AB33D3F

Personally I was healthy and robust. But my body felt like a land mine which could explode at any moment. I was afraid of sickness. Even a cold was a threat. I was sure I was destined to die young. I spent way too much time thinking about the fragility of life. So I worked on myself to stay grounded in reality.  Facts were facts. I was a decent athlete. I loved swimming. I had muscles. I started thinking I might make it past thirty. My interior conversations focused on survival. Eventually I developed hostility to the slightest physical problem that I developed. I figuC68053BF-2511-418A-8525-0A72CDF60EE3red burning hatred would douse any audacious bug that tried to get me.

When I met Michael and we fell in love, I was delighted to learn that he came from a crowd that had good healthy genes. Everyone lived to ripe old ages. I felt lucky to be with someone who’d most probably outlive me. He was big and strong and I figured I’d check out way before he did. My abandonment issues that were part of the constant fear from my mom’s illnesses receded into the background. I felt relief because no matter what happened to my parents, I knew I’d always have him. As we got older together, moving into our 40’s and 50’s, those gold-orange prescription bottles appeared on our shelves. We stood in front of them and laughed about the beginning of our inexorable decline. But aside from a few issues that Michael had, like a herniated disk or a torn Achilles’ tendon, we were still feeling pretty confident about our long range future. We were the boomers, after all. Destined to outdo our families at everything, including longevity. I referred to myself as sturdy peasant stock. In a former life I was the person sent to the Volga River with a wooden yoke across my shoulders, carrying back water-filled buckets on a ten mile trek back to the village. My now-aching knees held up well back then,  until menopause hit and stole away the magic of estrogen and smooth gliding joints. And Michael? He was referred to as The Beast. He was invincible. He could lift anything, build anything and play multiple sports. He was like a superhero. As a teenager, he lifeguarded for three years. He saved a Boy Scout who fell off a raft into rushing white water. He hauled me to safety when I got stuck in a powerful undertow in the Gulf of Mexico. On his first day of teaching, he resuscitated a young girl with a heart condition and kept her alive until the paramedics arrived. He “loomed.” Once, when three drunken college students bumped into me on a sidewalk and cursed at me, he made them stand in a line and apologize to me. When the neighbor kid took all his money and bought a beater car from a bad egg who was taking advantage of him, Michael went and returned the vehicle and got all the money back. An imposing man.  I was safe and secure. All my jangly nerves, tuned over a lifetime, settled in his sphere. He was my omnipresent sedation. But there were some issues for both of us which stemmed from our youth.C30236C5-3E44-4A55-92E5-9C59CAB81B56

We grew up during the years when being outside without sunscreen was the norm. We both suffered terrible burns. He was a fair skinned guy with reddish hair, the son of a blonde and the nephew of a carrot top. I was pink and white, but toasted myself regularly and had multiple blistering episodes. Being red or tan was supposed to be healthy. People looked better with a tan. We used baby oil and Bain Du Soleil to deepen our color. Coppertone and Sea and Ski were applied mostly for aroma. A history of skin cancer ran in both our families. Michael’s heritage was worse than mine as his parents had more leisure time spent sunning on vacations and living in Florida. His father was stationed in Hawaii during World War II and tanned constantly. They began developing basal and squamous cell carcinomas in their 50’s. When caught early, those cancers were rendered harmless by excision. Both his parents had regular dermatology appointments and were frequently treated with liquid nitrogen for pre-cancerous lesions and/or mini-surgeries. Eventually, the more dangerous melanoma showed up on his mother’s body twice, but the tumors were removed before they had a chance to metastasize from her skin’s surface. His parents were well into their 80’s when these cancers became a commonplace occurrence.

In my family, there were a few basal and squamous cell tumors which were dispensed with easily. But then, my older sister developed melanoma. Hers was caught before it spread but Michael and I realized we’d better get serious about having our skin  checked on a regular basis. We both had numerous moles removed and were monitored every three to six months. We believed that the thinning of the ozone layer that occurred during our lifetime allowed for more ultraviolet ray damage to our tender major organ. Which is exactly what the skin is-a delicate organ. We laughingly called our regular doctor visits slice and dice appointments. I had one cancer and many pre-cancerous lesions burned or removed. Michael’s problems were almost always malignant. Our doctor prescribed numerous topical treatments for him to try fending off what was likely to become cancerous. We applied them to his face, back and chest which looked macerated and gory for periods of time. But we felt like these were manageable problems. We were being vigilant and cautious and felt that as long as melanoma could be avoided or treated before it got too aggressive we’d be ok. The price we had to pay for our careless youth wasn’t as bad as it could have been.14379BC9-2EC8-4137-9992-B8383B690986

The spring of 2012 was a good time for us. We’d lived together for forty years by then. The struggles of young couples in sorting themselves out were far behind us. We were among the fortunate people who’d fallen more deeply in love with each year we spent together. Our first ten years were spent on our own so we had plenty of time for wonderful, carefree adventures. When our children came along, we were ready. We savored our family life, through the great times and the bumpy ones. Mostly we felt lucky that we had healthy, successful kids who were really decent people that grew up to care about the world. When they moved on in their lives, we didn’t go through an empty nest period, but rather returned to those first ten years’ of couple practice and picked up where we left off, truly reveling in each other’s company. Life is never perfect but our little cocoon was a happy place. One night in February, 2012, we were in our bedroom getting ready for sleep when I noticed a small reddish-blue blemish on Michael’s left cheek. It was tiny and unremarkable except for the fact that it was new. We looked at it with a flashlight and magnifying mirror and decided that if it was anything at all, a basal cell carcinoma was the most likely diagnosis. He’d had many of those before. But we were cautious. Both of us had our regular dermatology checks coming up, mine in March and his in April. I suggested that we switch appointments since he had a new lesion but he said he didn’t think that was necessary. And he noted that as long as he didn’t have melanoma, he wasn’t going to be worried. So we left our appointments as they were.

At this point in time, Michael was teaching high school government and history classes. In his 50’s, he’d walked away from his partnership in a music store that he’d built for 27 years. With the advent of big box stores like  Best Buy and free music downloads from the internet, business was shrinking, frustrating and depressing. Michael had spent years as an alderman in our community, as the plan commission chairman and as an active participant in a variety of community service programs. But he was looking for something new and felt his political science bachelor’s degree was relatively useless. So he went back to college, took 30 undergraduate education hours and became certified to teach secondary school. Eventually he went on to graduate school for a Master’s in the teaching of US History. And he found his vocation. He literally ran to school every morning. He was usually the first one in the building. He took on the classes assigned in his department and eventually wrote his own class, Modern American History through Film and Music. A blend of all his favorite loves in one blaring classroom. He worked constantly, coming home late afternoons, resting for a bit, and eating dinner before retreating to his “cave” where he happily tweaked and refined his units with total intensity. I worried about his long hours but he was truly happy. I had retired from a thirty-plus years job as a public official. I was a certified professional but mostly loved having a flexible job working with one of my best friends who made sure I was comfortable and able to mother my kids without pressure. When she retired, I worked awhile longer, but when my daughter became pregnant, I left work to care for her baby, hoping she’d never have the early years day care woes that I went through as a young mom. In addition, we’d moved my elderly mother, who’d made it through her dictionary of diseases, into our home to care for her as she became less able to fend for herself. Life was good.1F481BF7-EBA9-4512-9B56-9BDD14ABD9CA

On April 17th, 2012, Michael went to his dermatology appointment and his doctor examined the new small blemish on his left cheek. She said she was 95% sure that it was a basal cell carcinoma and performed a biopsy immediately. Michael came home with a small band-aid and the usual instructions on how to keep his wound clean and ensure that it would heal with little scarring.  

By this time I was sixty and Michael was sixty two. We’d begun to have conversations about mortality that go along with moving into the decades that suddenly feel older. My father, who died at a disappointingly early sixty-seven used to talk with me about how if you were lucky enough to avoid serious illness in your 50’s and 60’s and make it to seventy, you could often just cruise for awhile and be ok. His own parents had died at thirty-nine and fifty-four. So amazingly young. Both he and my mother had developed cancer  just weeks apart in 1989. His was bladder, hers was breast. I remember the phone calls coming into my office informing me of the malignancies. I remember it was then that I realized we were all one phone call away from our lives turning upside down. A week after Michael’s biopsy, he was teaching. I was upstairs with my grandson, trying to get him down for a nap. My cell phone was in my pocket on vibrate. When I looked at the incoming number, I realized that it was the dermatology office. I slipped out of my grandson’s room and in a whisper, answered the phone. I heard our dermatologist’s voice and felt a surge of fear. She told me I needed to sit down. My instant thought was “melanoma.” But then she said I needed to get Michael out of school immediately because he had an appointment with a head and neck cancer surgeon in two and a half hours. I said, “What in the world is this?” And I heard the words, Merkel Cell Carcinoma. Unlike what we’re led to believe, melanoma is not the deadliest form of skin cancer. That title belongs to Merkel Cell which was what Michael’s biopsy showed. Time being of the essence in this case was a classic understatement. She told me she had hope because it still seemed early based on the size of the lesion. She’d never had a Merkel Cell patient in all her years of practice. The rare bird, one of the orphan diseases. At that time, there were about 1500 cases diagnosed per year in this country. I hung up the phone, contacted Michael at school and ran to my computer. I’d heard of this disease which most often struck people who were elderly or who had compromised immune systems from a friend whose father had the disease. I remember her telling me that the website she found about it was so terrifying she could barely look at it. Michael arrived quickly from school and we sat and read together. At that time information was scant because so few people got the disease. Those who did and whose tumors metastasized had a limited lifespan. I remember looking at a small chart in a blue box that analyzed data on about 2600 patients gathered over several years. At the bottom it stated that 277 were alive 5 years after diagnosis. I turned to Michael and said, “You need to be 278.” We were now the people whose lives had been upended by the one life-altering phone call.

 

 

 

 

I Don’t Understand

C181EC38-5127-4EB0-A331-281FBF237A8BI was reading about Stephen Hawking in the aftermath of his death. By all accounts, the genius of our time. And he said some pretty interesting things. He was an atheist. He believed in multiple parallel universes. He said that the greatest enemy of knowledge is not ignorance, it is the illusion of knowledge. After thinking about all of his theories which are so outside the box and  the definitions of “normal,” I realize more and more that I don’t understand anything.

2C615950-F1C0-423B-9134-0E769CFCF9B3As I moved away from Hawking, I stumbled across an article about some studies being done by a British psychiatrist, psychotherapist and research fellow which posits that human brains are connected by an “interbrain” which is quietly collecting information that ultimately accounts for “sixth sense,” deja vu feelings and those “I was just thinking about you” moments that we all have at one time or another. Maybe that accounts for some of the constant traffic I feel in my mind.

4667923B-F65C-4340-B2AE-2B49BBCFE075Then I read about spiritual vortexes which are part of New Age concepts. They liken certain geographical locations with high energy centers comparable to a vortex like a physical whirlpool. Except that when people are in those places, the energy from them has a powerful effect on creating internal peace and harmony while realigning spiritual forces that feel chaotic and disintegrated. I went to Sedona last year, the embodiment of that type of place, and though I can’t speak to the efficacy of these forces, I can say that the majesty and beauty there do impart perspective and deep thought when trying to figure out your place in the world.

There are lots of thinkers and dreamers trying to make sense of our complicated universe. Maybe one day the technology will exist that can explain or measure what is now inexplicable. The stuff that confuses us about what’s real or imagined. What are dreams and what are not? What feels unsettling and yet somehow comforting? What is possible and what is fantasy?

So what does any of this have to do with me?

5FBD80A9-0D9B-4AA4-B960-062E9B70644AMy beautiful azalea hasn’t bloomed yet this spring. The weather has been spectacularly unpredictable. Two days ago, five inches of snow fell, covering all my emerging flowers. I have lots of greenery but no blooms. A series of unexpected family events caused me to cancel a trip to Florida twice. Apparently toes in the ocean are not my destiny at this time. My forward trajectory to the one year anniversary of Michael’s death took a few side trips. But now I find myself staring down at the month of May which is heavily loaded with my “firsts,” those days which will be the ones without my partner of 45 years. Plus other May days which are emotionally loaded.BA20BC12-84CC-4698-862F-6BA39E89AE46May 1st is my wedding anniversary. Last year was our 6th last anniversary. Since 2012, we’d approached each one as if it was the last. And finally the last one came. A more difficult day than I could have imagined because Michael had a mini-stroke that day and for a brief time didn’t know my name. That was hard to manage. Then mother’s day arrives, followed quickly by Fern’s birthday which always leaves me feeling bereft, even after almost 30 years since her death. We were supposed to be old ladies together, rocking on a porch somewhere, singing Beatles songs and reminiscing about seeing them live when we were thirteen. But alas. 14801FD6-F6E7-4E39-B03B-10DAA2F4C705My birthday comes ten days after Fern’s and then in four more days, the first anniversary of Michael’s death. His early June birthday and father’s day top off the emotional minefield of my upcoming calendar.  

I’ve been working really hard on myself this past year. I’ve read many books about cancer, grief and recovery. I’ve been to therapy and support groups. I had what was seemingly a big closure event celebrating Michael’s life. EDCD392D-F52F-4446-9971-74991CB664B6That magic one year anniversary that is talked about in death and grief literature is almost upon me. And the thing is, I don’t feel much different than I did right after Michael died. I still feel married. I feel his presence around me every day.

I’m very busy. I’ve taken classes, gone on trips, made new friends and kept old ones. I swim frequently every week. I’m planning my 50th high school reunion with former classmates. I’m writing every day, either in a journal, in transcribing Michael’s many notes and most importantly, working on the book which I hope will benefit others who wind up having to navigate cancer and our impossible health care system. And to top it off,  I’m still writing letters to Michael which are like the running conversations we had about life, family, politics. He doesn’t respond but I feel better after unloading all my thoughts.75D11CE1-A19B-44F7-A226-853A56170089He is still with me. Sometimes, on a difficult day when I feel like I’m sinking, I get this astonishing sense of inhaling his presence and being lifted from a downward spiral. I feel buoyed and my confidence reasserts itself. The feeling is overwhelming and reminds me of the relief I’d feel after a bad day when I’d come home and be with him and share my experiences in safety and comfort. I have transformative dreams where his touch or his words waken me and I am thrilled with what’s happened and feel better for days. I love being in our home and especially in my bedroom at night. I’ve never experienced the urge to leave this place and be somewhere which isn’t loaded with memories. I’m not lonely for anyone but Michael. I’m not seeking a companion to fill his space. But for his absence, my life feels as rich and full as it always did. And with these mysterious and powerful connections to him, I am left wondering. How much microbial and genetic information did we exchange through our 45 years together? What parts of me became so physically altered that he is still truly part of me? What do I conjure subconsciously and what is left of his energy that stays in my space? Is he in a parallel universe that brushes up against mine intermittently? Are the wavelengths of what we shared still reverberating all around me? Am I a spiritual vortex that exerts energy which draws people or their vestiges into my swirling center? Question after question after question.BCF418C4-13F9-40B3-9DB7-047F2F64C98C

I still sleep on my side of the bed. The soft duck that Michael shared with my grandson is  ensconced there. When Michael got his dreadful prognosis of 2-3 months to live in November of 2013, I bought two big body pillows to stuff into what would be his empty spot. I use them but not as much as I thought I would. I read at night and listen to music before I sleep. Sometimes I meditate. I love to look at the photos of Michael which smile at me near my bed. Right before I go to sleep I send him a mental message asking him to drop by for a short visit. Sometimes it happens and mostly it doesn’t. 52A158F9-869A-48C3-B37C-3ED60D2998AEI feel comfortable in this process I’m following. I feel real to myself. I know I’m still directed to the world I inhabit and am engaged in life like I’ve always been. But exploring these new interior places in my own way and trying to figure things out suits me. My greatest pleasure is my certainty in myself. Not caring how I’m perceived by others is truly liberating. I only have to answer to myself and the principles I adhere to in my personal journey of what I hope is honesty and integrity. And I honor the life I built with Michael and my family. That journey continues. But I truly don’t understand so many things that I wish would be factual and concrete. My son-in-law says the technology isn’t here for what I want to know. So I’m just accepting the way it’s going for me and I won’t be intimidated by expectations of any sort. I don’t understand a lot. That is certain.  But right now, nobody else does either. We conjecture away and try to find a place to just be our own true selves. Our places are not all the same. That’s where I am as my first year as an unexpected widow is coming to a close. I’ll cry a lot in the coming weeks. But I’ll still be questioning and wondering and living. And Michael will still be here with me. Although I don’t know how that’s happened. C5C7CDCE-97D0-49CF-BC0D-BE2A772F3F34

My American Journey

Student Gun Protests, Washington, USA - 24 Mar 2018Today, I obsessively watched every minute of the March For Our Lives television coverage. I cried while I listened to the brave speeches of young children who bore witness to what had happened to their classmates and their schools. I watched John Lewis march with young people in Atlanta and remembered his face as he bled for Selma. I realized that my American life as I chose to live it was flashing through my memory, decade by decade. When the DC coverage ended, I joined my children and grandchildren braving the blustery wintry elements at our local march. I wished my husband was alive to share in the experience with us. I spent most of the day mulling over how I got to this place. 8D0EE441-7987-4D61-9E47-118B3287898AWhen I was a little kid, my school had air raid drills. We all lined up in the hallways, sat down, bent in half and put our hands over heads. Sirens wailed and after a period of time, the practice ended and we went back into class. I remember thinking that I was pretty certain that my arms would offer little protection if an atomic bomb landed on top of me. I never forgot feeling threatened from that vulnerable age of six and I suspect that most of my peers haven’t forgotten either.6315DA5A-6A71-4E5B-B30C-2D886FF2C75A

In the early 60’s, I felt tremendous fear during the Cuban missile crisis. We had a black and white television set which was fairly small and sat on a folding chair. My dad was usually parked in front of it and I liked to stand behind him and lean on his shoulders, asking questions and trying to understand what was happening in the world. When Kennedy addressed the country, I could feel the tension in my father’s body and I asked him, “Dad, are we going to have a war?” Imagine the terror of an eleven year old hearing the response, “I don’t know,” from the person whose job is to protect you from harm. Earth shattering. I never forgot that day, either  And then, slightly more than a year later, Kennedy was dead and it seemed that the whole world was falling to pieces. We watched television from Friday through Sunday when I saw the shooting of Lee Harvey Oswald as it happened on live tv. I had an overarching sense of terror and insecurity. I hated those feelings. I wanted to do something, to give myself some tools that would create a sense of self empowerment in what felt like a wobbly, unstable world. 03CBA8BF-540F-49B7-A42E-60921D84B071I became a news addict in my early teens. I’m not sure if I’d heard the expression that knowledge is power but I was relentless in gobbling up information. I watched Walter Cronkite and Eric Sevareid who emitted intelligence and calm to me. I read the now defunct Chicago Daily News and the Chicago Sun Times. I don’t think my parents ever brought a Tribune into our home. Too conservative. 

 

The Civil Rights movement was unfolding in front of me. My racially mixed high school stimulated conversation and conflict. The Blackstone Rangers, a local gang, were making inroads into our neighborhood. Courthouse DemonstrationAnd there was Vietnam. The draft. Finally it was 1968, my senior year of high school. King was assassinated and then, Bobby Kennedy. I was seventeen years old and my country was on fire. Young people rose up. At the Democratic convention that summer, the downtown street corners near my job were patrolled by police in riot gear. I was wondering if I could love my country through the madness of events swirling around me. Everything was so wrong. Violence was everywhere and people in power were sending my friends away to fight in a war that made no sense. After living through that wild Chicago summer, I started college in the fall. My brain hurt from thinking so hard all the time. I separated myself from my high school life and moved to the left politically. I joined with many others to actually do something to try changing the direction of current events. School wasn’t as interesting the student movement. I was all in.9FFCEAC2-E5CB-4D92-9362-8DB399E8DE3FI spent the bulk of my college years participating in demonstrations, reading and educating myself in more depthful ways than what I’d experienced in high school. I found my niche with fellow students who saw injustices and were bent on fixing them. I worked in a bookstore that sold books that exposed the seamy underside of our government. I went to Washington, D.C. to participate in anti-war protests. I was at the one in the photo below at which over 10,000 people were arrested and held in RFK stadium. I escaped there but the following week, I was arrested in my own student union during a sit-in at a Marine recruiting station. I faced disciplinary action by the university. We had a few moments to defend ourselves and my dad wrote a letter to present on my behalf, thanking me for opening his eyes to the fact that our government was spying on its own citizens and was corrupt. My charges were eventually dropped. But I actually had an FBI file. When my husband and I applied to see our files under the Freedom of Information Act, we received heavily redacted documents which led us to wonder who among our friends were actually spies. Truly unsettling. Anti War Protest 1967For me, those formative years permanently altered the course of my thinking and my life. The movements that I poured my energy toward are still unfinished, except for Vietnam, which after long years, finally ended. That is, unless you count all those soldiers permanently mourned and the ones who survived, bearing the weight of their service in what became such an unpopular war.

The civil rights’ and women’s movement have made strides but there is still a long way to go. Now we have #metoo and Time’s Up. Not to mention the travails of the LGBTQ movement. For me these are part of a long continuum that require endless commitment.  My mind and heart are in the same places they were 50 years ago. Some days I feel exhausted by the repetitions of history. Now there is another youth movement rising, the one I saw today, with the horrendous burden of trying to save their own lives at home, in their schools and in their streets. I feel solidarity with them and want to show my support for what will invariably be a long and protracted struggle with power deeply entrenched in the halls of our government. I don’t have the same physical strength I had when I was young but my mental and emotional strength is alive and vibrant. I want to share it with those people that I saw today and help them in the days ahead. I’m worn by the seemingly endless battles. But as the saying goes, dare to struggle, dare to win. There will always be wrongs to right. My American journey continues. I continue.

 

My American Journey

Student Gun Protests, Washington, USA - 24 Mar 2018Today, I obsessively watched every minute of the March For Our Lives television coverage. I cried while I listened to the brave speeches of young children who bore witness to what had happened to their classmates and their schools. I watched John Lewis march with young people in Atlanta and remembered his face as he bled for Selma. I realized that my American life as I chose to live it was flashing through my memory, decade by decade. When the DC coverage ended, I joined my children and grandchildren braving the blustery wintry elements at our local march. I wished my husband was alive to share in the experience with us. I spent most of the day mulling over how I got to this place. 8D0EE441-7987-4D61-9E47-118B3287898AWhen I was a little kid, my school had air raid drills. We all lined up in the hallways, sat down, bent in half and put our hands over heads. Sirens wailed and after a period of time, the practice ended and we went back into class. I remember thinking that I was pretty certain that my arms would offer little protection if an atomic bomb landed on top of me. I never forgot feeling threatened from that vulnerable age of six and I suspect that most of my peers haven’t forgotten either.6315DA5A-6A71-4E5B-B30C-2D886FF2C75A

In the early 60’s, I felt tremendous fear during the Cuban missile crisis. We had a black and white television set which was fairly small and sat on a folding chair. My dad was usually parked in front of it and I liked to stand behind him and lean on his shoulders, asking questions and trying to understand what was happening in the world. When Kennedy addressed the country, I could feel the tension in my father’s body and I asked him, “Dad, are we going to have a war?” Imagine the terror of an eleven year old hearing the response, “I don’t know,” from the person whose job is to protect you from harm. Earth shattering. I never forgot that day, either  And then, slightly more than a year later, Kennedy was dead and it seemed that the whole world was falling to pieces. We watched television from Friday through Sunday when I saw the shooting of Lee Harvey Oswald as it happened on live tv. I had an overarching sense of terror and insecurity. I hated those feelings. I wanted to do something, to give myself some tools that would create a sense of self empowerment in what felt like a wobbly, unstable world. 03CBA8BF-540F-49B7-A42E-60921D84B071I became a news addict in my early teens. I’m not sure if I’d heard the expression that knowledge is power but I was relentless in gobbling up information. I watched Walter Cronkite and Eric Sevareid who emitted intelligence and calm to me. I read the now defunct Chicago Daily News and the Chicago Sun Times. I don’t think my parents ever brought a Tribune into our home. Too conservative. 

The Civil Rights movement was unfolding in front of me. My racially mixed high school stimulated conversation and conflict. The Blackstone Rangers, a local gang, were making inroads into our neighborhood. Courthouse DemonstrationAnd there was Vietnam. The draft. Finally it was 1968, my senior year of high school. King was assassinated and then, Bobby Kennedy. I was seventeen years old and my country was on fire. Young people rose up. At the Democratic convention that summer, the downtown street corners near my job were patrolled by police in riot gear. I was wondering if I could love my country through the madness of events swirling around me. Everything was so wrong. Violence was everywhere and people in power were sending my friends away to fight in a war that made no sense. After living through that wild Chicago summer, I started college in the fall. My brain hurt from thinking so hard all the time. I separated myself from my high school life and moved to the left politically. I joined with many others to actually do something to try changing the direction of current events. School wasn’t as interesting the student movement. I was all in.9FFCEAC2-E5CB-4D92-9362-8DB399E8DE3FI spent the bulk of my college years participating in demonstrations, reading and educating myself in more depthful ways than what I’d experienced in high school. I found my niche with fellow students who saw injustices and were bent on fixing them. I worked in a bookstore that sold books that exposed the seamy underside of our government. I went to Washington, D.C. to participate in anti-war protests. I was at the one in the photo below at which over 10,000 people were arrested and held in RFK stadium. I escaped there but the following week, I was arrested in my own student union during a sit-in at a Marine recruiting station. I faced disciplinary action by the university. We had a few moments to defend ourselves and my dad wrote a letter to present on my behalf, thanking me for opening his eyes to the fact that our government was spying on its own citizens and was corrupt. My charges were eventually dropped. But I actually had an FBI file. When my husband and I applied to see our files under the Freedom of Information Act, we received heavily redacted documents which led us to wonder who among our friends were actually spies. Truly unsettling. Anti War Protest 1967For me, those formative years permanently altered the course of my thinking and my life. The movements that I poured my energy toward are still unfinished, except for Vietnam, which after long years, finally ended. That is, unless you count all those soldiers permanently mourned and the ones who survived, bearing the weight of their service in what became such an unpopular war.

The civil rights’ and women’s movement have made strides but there is still a long way to go. Now we have #metoo and Time’s Up. Not to mention the travails of the LGBTQ movement. For me these are part of a long continuum that require endless commitment.  My mind and heart are in the same places they were 50 years ago. Some days I feel exhausted by the repetitions of history. Now there is another youth movement rising, the one I saw today, with the horrendous burden of trying to save their own lives at home, in their schools and in their streets. I feel solidarity with them and want to show my support for what will invariably be a long and protracted struggle with power deeply entrenched in the halls of our government. I don’t have the same physical strength I had when I was young but my mental and emotional strength is alive and vibrant. I want to share it with those people that I saw today and help them in the days ahead. I’m worn by the seemingly endless battles. But as the saying goes, dare to struggle, dare to win. There will always be wrongs to right. My American journey continues. I continue.

 

Resilience

FABDE0C8-B9CA-4F75-B122-CC5F81CB6582This is Rose, my maternal grandmother. She’s holding her third son, my uncle Harold. Grandma had eight live births and as many as five miscarriages. Three of her children died, one at two, another as an infant and the last at age ten. The latter two died within six months of each other.  She once miscarried outside in the snow, in front of her apartment building.

Her husband was my grandfather Sam. He’d been married in his early teens to a deaf mute girl with whom he had one son, Benny. Ultimately that first marriage was annulled. Subsequently he married my grandmother who’d moved in with his family after her mother died. Her father had remarried and his new wife wasn’t fond of Rose. My grandfather’s parents, her aunt and uncle took her in, and soon after, Rose married Sam. Yes. My grandparents were first cousins.  

They lived in a town of several thousand residents called Wyszkowa, Poland, not far from Warsaw. About half the citizens were Jewish. An uneasy friction existed between them and the rest of their community. I know that my grandma’s father was a tinsmith who at one point worked on the roof of the tsar’s summer palace. So he was a skilled laborer. But most of their friends and neighbors were scratching out a living and were essentially poor. Frequently Cossacks raided their town and my great grandparents dug a deep hole in the ground where they hid their daughters to protect them from assault and rape. My grandparents, along with my grandmother’s siblings, all wanted to go to America to begin a new life.

Sam left Poland in 1913 when he was nineteen years old. He and Rose had an infant son. He hoped to send for my grandmother, his son Benny and their boy Robert quickly, after he found a job. But World War I intervened. My grandmother stayed in Poland for seven more years. Their baby Robert died of pneumonia during the war.  Rose and Benny survived. She finally made her passage to the United States on the SS Rotterdam in 1920. E470C512-6546-49EC-962C-399AFCECADE8I’ve often thought of what she must have felt on that journey. Her baby was dead. She hadn’t seen her husband in seven years. She was packed into steerage with what was undoubtedly a wide and confusing array of unknown travel companions. She spoke no English. She was illiterate. She grew up in a society that, like many, viewed women as second-class citizens. Being Jewish, she was accustomed to being treated as other, with great prejudice. But like so many before her, she stepped off into the unknown, equipped with her native intelligence, a good deal of superstition and no idea what the future held.AFEE9248-8CED-49C1-B98F-4608855080D7

Seven years is a long time to be apart. My grandfather, although not particularly attractive, was evidently a ladies’ man. That meant little in terms of his marriage. My grandmother became pregnant almost immediately and spent the next decade and a half conceiving. While not caring for her babies, her primary occupation was cleaning and cooking. She was masterful at both those tasks, much more so than parenting. Her life experiences eroded her emotionally and the sustenance she provided her children lacked a strong emotional component. My mother often said she couldn’t remember her mother ever saying that she loved her. Rather, as the only surviving female child, she became my grandmother’s unwilling accomplice in making sure that the house was so clean, you could “eat off the floors.” The ability to cook was the legacy which benefited those of us in subsequent generations.  

While she walked her challenging road, grandma learned to speak English, albeit with errors. I remember her saying she needed to get a description filled at the drugstore. Minor and  entertaining mistakes. She paid attention to politics. All her sons were soldiers in World War II and her youngest son went to Korea. The family members left behind in Poland all vanished in the holocaust. My mother remembered a frequent exchange of letters between my grandfather and their relatives prior to 1940. They were written in pidgin Yiddish and my grandparents would enclose one or two dollars in those sent back home. During the war, all communications ceased.

 

My grandmother was bitter. In restrospect, I understand why. I can’t imagine what it felt like to be as powerless as she felt. Nor can I understand what grief she experienced after having three children die. And the rest of her family who disappeared into the anti-Semitic void. My mother remembers her hollering loudly at my grandfather when he left to help single women in their apartments, a euphemism for his philandering. He did nothing to help her evolve or develop. She was smart but had no method of entry into a world that could enrich her life and offer relief from the relentless cycle of child rearing and housekeeping and grief. Being unable to read must have constantly made her feel “less than” – less than those around her who were benefiting from life in the land of supposed opportunity.

My mother was the frequent object of her rage. As the only other female in the household, she was the person over whom grandma had a modicum of power. Their relationship exists in my memory as an endless argument, over everything and nothing. I was on my mother’s side. She told me of a childhood where she felt subservient to her brothers. That when other children played, she came home from school to scrub floors and run to the shops for food. I resented my grandmother on my mon’s behalf and hated the sound of their incessant arguing.F056C811-78E3-48E4-9F51-A283AAC17D8BThe photo above shows my grandmother scrubbing away. She spent a lifetime cleaning, in her rooms with the furniture covered in thick plastic that made you sticky when sitting on it. The photo below shows the wear of the years of childbearing and cleaning. A20906DF-7B12-4AB8-88C3-C5DEE6D6D65AMy grandfather had a variety of jobs, as a laborer, carpenter and chauffeur. Eventually he became a barber which was his last career. Their children grew up and moved out, leaving them in a fractious but lengthy marriage which lasted over 60 years. They watched grandchildren and then great grandchildren enter the world. Here they are at my brother’s wedding in 1964.4F277931-A772-46C7-A976-E966DC1A6DF0 In 1968, they joined my parents in celebrating their 25th wedding anniversary. 23AFD220-FEFA-47FD-970C-75669ABE54C6The following year, my grandfather’s health failed and ultimately he was diagnosed with kidney cancer. He died in the spring of 1969. My parents moved my grandmother into their apartment but the tension between her and my mother was untenable. After less than a year, she moved into her own apartment. She got herself a job, taking care of old people as she put it, although she was in her seventies. When I’d come home from college, we’d visit her and sometimes I noticed that she was practicing writing the alphabet on lined paper at her kitchen table. She looked through magazines and newspapers. I knew she was smart but embarrassed by her lack of education. So sad.D2181F02-2AEB-4F87-8951-538862CA63F6

I was moved by her efforts and realized more and more about how small a world she occupied while living under the archaic rules of the old country, despite having lived in the U.S. for over 50 years. Eventually, at her advanced age, she found the will to become an American citizen, memorizing the requirements,  taking her tests orally and finally earning her right to vote. She watched the news and had strong opinions about politicians. She despised Richard Nixon and called him a liar. She spat the name Ronald Reagan, “that cowboy.” She hid her Social Security money in her freezer, wrapped in aluminum foil. When I married Michael, we laughed as she gave us “cold cash” as a gift. She told all of us grandchildren individually that no one understood her but the person in front of her face. She was a classic emotional manipulator. But she was more loving as time passed. When she kissed me, she’d bury her nose in my cheeks and neck and inhale the smell of child. She bought dresses for the girls and nice shirts for the boys. A76B2697-95B8-49DF-82EB-8B4BB23703E1She usually wore what were called “ housedresses.” They were a cross between a nightgown and a muumuu. Comfortable. My mom said my grandfather was tight-fisted with money, but Rose was generous. As years passed and she eventually became less mobile, my mother and my uncle Jerry, her youngest son, brought her groceries and took her out of her apartment for a meal or a visit. Family events were always a thing when I was young. Usually, we all got together weekly. Grandma or Bubba, as we eventually called her, enjoyed her time with the great grandchildren immensely. As she aged alone, some of her harshness faded, her jagged edges smoothed by time and distance from her early struggles. She was physically strong and healthy for a long time, needing virtually no medication or surgical interventions. She was somewhat vain and was mad for shoes which she bought in the wrong size because she didn’t want to admit that her feet had gotten bigger. She still cooked delicious food and maintained a caustic tongue.

Eventually, I recognized her and admired her as sturdy peasant stock, a woman of great resilience. Imperfect, certainly, but with the ability to scrabble her way up out of immeasurable suffering and still giggle lustfully at baseball players on television, eat heartily, and laugh with abandon. The next photo was taken the day before my grandmother died. She was at a Fourth of July gathering at my uncle Jerry’s house with my cousins, his wife and my parents. My father must have taken the picture. 19C50101-3430-4E32-82BB-E32DF7C3DA90That night when my parents drove her home, my mother told me that Bubba turned to her and said, “Wasn’t this a beautiful day, daughter?” They walked her upstairs. The next morning, my mom called her several times and when she didn’t answer, my parents drove to her apartment. They put their key in the lock and when they opened the door, the chain lock was still in place. They saw her lying on the floor. She’d died sometime during the brief hours between the evening before and the morning. It looked like a fast death, likely a heart attack or a stroke. She was 89.

My grandmother lived long enough to meet my daughter. Altogether she met twenty grandchildren and great grandchildren. She and my mother both lived a long time. They were incredibly different except for their shared resilience. They both overcame difficult young lives, albeit with different problems. As is common for those children whose parents treat them poorly, my mother was incredibly indulgent to me and my siblings. I often say I’m a victim of being overly loved. Not a joke. So I here I stand. These women are both gone. I think of Rose and wonder if I have the resilience that she passed on in a harsh way to my mother who handed it more gently to me. I hear both their voices in my mind and remember many different stories that are part of our family lore. I am the widow that they were, looking down the road wondering what and how long is ahead for me. Resilience is my mantra. Materially, I don’t have much left of either of them. But when my mother died and I was sorting through her things, I saw that she’d saved my grandma’s favorite housedress and often wore it. I couldn’t part with it. It’s probably about 50 years old and in great shape. As resilient as those women.AA36C6D4-987C-4D58-AB5B-85A2BD4D43B6 

After

7FF42FA6-2AE3-4911-A7DB-785F5AD7B1CC

Is there any new thought?
Is there any new feeling?
Is there any new wonder?
Is there any new curiosity?
Or has it all been done before,
With only the slightest nuance of difference
Separating ourselves from all the others?

You said you never fit anywhere.
I said I felt the same.
But we fit with each other despite frequent battles waged.

And now you’re gone
But for the space I am nurturing inside me,
Where we will stay together,
In the wonder of how no time would contain us.
We stretch into the unknown and disbelieved.
Because being apart is impossible and joyless.
I never knew joylessness
In the before.
I am still interested and curious, full of wonder and feeling.
But I am joyless.
Except when I huddle into the thick web inside me which is the fabric of our fit.
And I want to stay there.

Always and beyond.
I walk out here among those who are more like me than not, but still I don’t fit.
I am still with you as you said you will always be with me.
I believe you in a way that defies rationale.
I don’t care.
I’m going to do this my way.
I hear my voice clearly.
And I see your eyes. Looking at me in that way.
Still that way.

In the after.

 

Best Road Trip Ever (Every Word in this Story is True)

Oral histories are very cool. But I love the written word. When Michael died, my kids realized that our stories and experiences were deposited in my head and they asked to know more about what we shared before they showed up. This is one of my favorites. I hope you enjoy it. 

136FB2B6-495C-4A0F-911C-EAF00F22A084In the December cold of 1974, we were in sore need of a vacation.  I’d been in a paranoid state. We lived in a small white house on Oregon Street near some railroad tracks. The rumble of freights in the night and the squeaks of the rails frequently woke me. Michael the train lover slept through everything.

I was paranoid in our house. I always felt like someone was watching me. Our idea of window treatments were cheap bamboo shades, virtually transparent. Michael was always soothing me and saying I was imagining things, but one morning I woke up to let our dogs out and saw human footprints in the snow all around the perimeter of the house. The next night people were visiting, playing cards and chatting. My friend Fern was staying with us and was taking a shower when she suddenly burst through the bathroom door, saying there was a face looking at her through the  window. Everyone leapt up and ran out the door but me and my frightened friend. They caught the peeper by the tracks, hauled him to the front yard and called the police. The guy was quite penitent and promised not to return, Michael was in a barely controlled rage, and I was a mixture of terrified and righteous because I’d known all along that we we weren’t alone. Getting out of town felt like a necessity.

 

We had this old green Ford pickup truck. I don’t remember where we got it. Vehicles came and went with casual frequency. The truck needed work. But this baby was going to haul us all the way to Fort Myers, Florida, where Michael had been a few years before. He said there was the most beautiful campsite really close to the Gulf. We were both water lovers and thought this would be the perfect adventure, our first long trip in our young two year relationship. And a welcome relief from the stress. Michael, who was experienced at fixing cars, worked at Earthworks garage, night after night. The truck would be finely tuned and perfect for our adventure. Solenoids, alternators and carburetors tumbled through my head like word salad while car parts floated in containers on the kitchen table. In addition to the top notch mechanical repairs, Michael decided to build his own camper top out of wood. He painted it bright red, and added a couple of custom windows. Truly deluxe. Eventually he felt he’d done everything so we loaded up camping gear, food and our dogs and hit the road. E05B79A1-0898-4F8E-ACA2-2C7F17F38AAA

Back in the day, scraping together enough cash to take a road trip meant having about a hundred bucks, an urge to blow out of town and a fun destination in mind. Plans were fairly vague. Good company was the critical factor. We were eager to get to our destination, so except for a few bathroom and picnic stops, we decided to drive straight through to Florida, about a 25 hour trip. We took turns driving, sleeping, chatting and reading. Now and then we could pick up a radio station. No tapes, no CD players, no IPods. Day turned to night and then day again. The air warmed and though bleary-eyed, we excitedly pulled into Ft. Myers to make camp.

Suddenly, the truck started making really scary sounds. We managed to get to a gas station. Back then mechanics actually worked in gas stations and after awhile, they informed us that the truck’s engine block was cracked. A total loss. What a moment. Michael sprawled on the lawn near the station, staring up at the sky, close to catatonic. I, always brimming with great ideas, borrowed a phonebook and starting looking up parts shops, hoping we could strip out all Michael’s improvements and raise some cash to help us with the next phase of the trip. Loaded with camping gear and two lively dogs, we needed a vehicle. Tough to get with our meager funds. It didn’t take long to figure out that we’d need to swallow our pride and call our families for help.36E422A3-8E9E-4136-AF35-0886734DE606My parents, although far less financially well off than Michael’s folks, were more generous and infinitely more understanding. At the time, my dad worked for The First National Bank of Chicago which miraculously had a branch in Ft. Myers. He wired us $500, which we picked up and took directly to the closest used car lot. A classic experience. A tall middle-aged man named Jim, a toothpick spinning in his mouth at a pace that equaled his chatter, started walking us around his little lot, extolling the praises of the great deals he had for us. He really wanted us to buy this Oldsmobile Toronado. When he popped the hood, the engine was painted bright orange. We could only imagine what rust lurked underneath and felt helpless and confused. Vehicles in our price range were scant and we had dogs and gear to consider.D0F10567-4C5F-4CEF-806C-32B9188EE8E8Suddenly Jim remembered that he had a Chevy pickup with a camper top in the back, newly purchased from a family of migrant farm workers. He hadn’t even had a chance to spruce it up but at $450, it sounded like a dream come true. He pulled it up  and we took it for a quick spin. We didn’t exactly have many options so within half an hour, we bought it, drove back to the dead Ford, transferred our stuff and our dogs into the back and resumed our road trip. Yup. Just like that. That blue Chevy truck. One of the best moves we ever made. Here’s a photo of it in its long lasting glory.849566A4-EFA6-47BC-AD9F-482B105CD594So, problem solved. We took off for our beautiful campsite, determined to continue our trip and not let some setback wreck our good time. We headed toward the Gulf. The campsites were on a wooded side of the road. Michael was having trouble finding the location. He swore it was “right here.” But right here was nothing but concrete. To quote the immortal words of Joni Mitchell, “they paved paradise and put up a parking lot.” You  could begin to feel like the stars were aligned against us. We were exhausted. A long drive. A dead car. A nonexistent campsite. What next? I still remember our youthful determination. We were getting our trip no matter what the obstacles. We saw a police car and asked where other campsites were located. And he told us something that hadn’t made the news in Illinois. Evidently, the hotel/motel associations in Florida had figured out that camping was cutting into their profits. There was a new set of regulations that effectively banned camping, likely aimed at young people like us who were turning their beaches into hippie eyesores up and down the Gulf Coast.

What despair. We had no idea what to do next. Eventually we headed north to Sarasota, where Michael’s grandmother lived. He was more familiar with that area. When we showed up on Grandma Ruth’s doorstep, she took one look at us, said, “wait here,” came back with $100 and told us to get lost. Unforgettable. We got creative. We drove to a YMCA and asked if we could park our truck around the side of their building at night. They said yes. Sweet relief. Off we went to Lido Beach, where there was a bathhouse for showers and the beautiful white sand and turquoise water of our dreams. We ate peanut butter and jelly sandwiches, or baloney and cheese, laid on the beach, played with the dogs and read books. At last, our slice of paradise. Here’s a photo of Lido.901594E5-2541-443D-BF29-BC53371C3C8EThat night we drove back to our parking space next to the Y. We piled into the back of the camper with the dogs, cracked the windows and went to sleep. Scant hours later, we were roused by knocks on the back window, accompanied by flashing red lights and fast-moving heavy footsteps. We opened the door to the sight of police officers shining flashlights in our faces. They were looking for a fugitive and thought we might be hiding him in the truck with us. After they went through everything, they left us alone but we were so shaken by the idea of an armed felon in our new backyard, that we got back in the front to drive to a place which was better lit and not likely to draw attention from law enforcement. Our next choice campsite was the Southgate Shopping Center in Sarasota, still pretty close to Lido Beach, with the bonus of having easily accessible bathrooms when we woke up in the morning.81594AF3-7C66-419D-AFEF-D098C3F5440BWe finally went back to sleep in the parking lot of this mall. When we woke the next morning, we found the public bathrooms, walked the dogs and made our breakfast on our little Coleman stove on the back gate of the truck. People came and went, running their errands, doing their shopping and looking at us with a mixture of curiosity and revulsion. By this time we were really enjoying ourselves. We were wearing our “outside the norm attitude” with pride. We knew how to make lemonade out of lemons.

We lasted three nights at the mall before someone informed the police who politely asked us to pack up and leave. That day was rainy. We went to a Dunkin‘ Donuts and treated ourselves to sugary delights and spent the afternoon reading Raymond Chandler mysteries and trying to figure out where to go next. By this time, we felt like guerilla warriors on a mission to squeeze a decent vacation out of corporate America on the cheap and love it to bits, no matter what the obstacles. Where could we camp and be left alone by the authorities? And then it dawned on me. The one place you could park 24 hours a day and be unnoticed. The airport.C44A28E2-0AA2-4A4E-84C9-B6FB599FFF25

A perfect location. Bathrooms. Constant traffic. No one would notice us. With great relief, we drove there and parked, close enough to the terminal so we wouldn’t have a long hike for the bathroom and far enough away so no one paid us any attention. The airport was close to several beaches so we sampled many of them. The relaxing days passed until trauma once again descended on our trip. About the dogs….

Mine was a border collie named Ribeye and Michael’s was an Irish Setter named Harpo. Ribeye was the smartest dog I ever owned, easy to manage, well-trained, an intellectual dog that Michael always accused me of favoring over a “dog dog.” Harpo was another matter. A “dog dog” all right. No intellect to worry about with Harpo. He was nice, sweet, handsome and dumb as a post. In the days before leash laws, we used to open the door in the morning and let the dogs out. After a bit, we whistled and they came back inside. At least Ribeye always did. Harpo, who seemed to be missing his sense of direction, often disappeared. He wore tags with our phone number, so eventually we would find him, miles from home or perhaps a few blocks away, having wandered into the wrong yard and plopped himself down, spent from his travels. And that is exactly what happened at the Sarasota airport one morning, when we let them out. Ribeye returned and Harpo didn’t. Poor Michael. How he loved that absurd dog. We ran through the parking lots, searching, calling his name. There was a highway not far from where we were parked and we had visions of him crushed on the side of the road. Sarasota was a busy city with lots of traffic. We felt terrible. Suddenly I remembered that we’d been listening intermittently to what could be described as an indie rock radio station. Between songs, there were announcements for happenings and events that seemed to be directed at the “alternative” community. And only a mile from the airport there was New College, possibly a place where some kind student types like us, might find a dog with out-of-state tags and call that radio station to do a public service announcement. E5C61F9D-8FB0-48FB-8F54-5EB2CD4BA597

I got the call numbers from the radio, went into the airport, found a phonebook, phone booth and voila! It happened just like I thought it might. Someone on campus had found Harpo, called it in to the radio station and within a few hours, he was ensconced in the back of the truck with Ribeye, snoozing as if nothing traumatic had ever happened. Which it hadn’t, at least to him.

By this time, we felt like maybe we’d pushed this trip to its limit and decided to head home. We had almost no cash left and enough experiences to last awhile. We headed north, with fingers crossed that our “new” truck had enough life to get us back to Illinois.

Things went swimmingly, mile after mile until we reached Kentucky. Then those awful  thunking mechanical noises started. We managed to get to a Chevy dealership at mid-day. Michael figured out that we had a bad alternator. This place had some dead vehicles in the back and the office people said he could go back there and look around to see if he could find a replacement. Off he went with his tools and fairly soon, came back, triumphant, alternator in hand. We asked how much they would charge for it and were told 10 bucks. Which, if we paid in cash would leave us nothing for the rest of the trip home. Michael asked if they’d take a check. The person working said that the only person who could decide to accept an out of state check was the owner of the dealership. Okay then. Can we speak to the owner? Sorry. The owner went home and is taking a bath. Well, then. Michael went outside and swapped out the alternators. He came back in, hoping that the owner had returned from his midday soak. But, alas. We went back outside and although I tried to argue him out of leaving, Michael’s infamous short temper had finally asserted itself and he said he was leaving and hoped I’d join him. I got in the truck and spent the next hours craning my neck, looking behind us, waiting to be arrested for stealing the alternator. Michael was bemused as I imagined myself in prison stripes, trying to explain everything to my parents. We arrived home safely with this absurd vacation tucked into our memories. It became the stuff of our personal lore and we often thought about what a great time we had, despite every ridiculous event that happened. I guess the most important thing we learned was this trip was a metaphor for our life. Lots of wrenches unexpectedly thrown into our innocent plans, which we navigated without ever coming unglued. Best road trip ever, best life trip ever. 

 

What This is Really About

91307041-1C8A-4055-A4A6-93DDF3273B9DThese days I spend a lot of time alone. I need the space and I enjoy it. For a seemingly social, friendly, engaged person, I’ve always had hermit tendencies. When Michael was alive, we were often hermits together. We each had our own interests and spent lots of hours, next to each other,  but pursuing individual activities. In a way, I guess that made me a good candidate for my unexpectedly early widowhood. In elementary school in Iowa, and I think in Illinois as well, there was a place on our report cards that said: Makes good use of time. I always got a positive check in that box. I think that for the most part, I am making good use of this new time, despite the absence of my big, crazy guy who isn’t sitting in his proper place in our living room. Perhaps too much use of my time, especially brain time.

774C4BC5-199A-480C-9473-8A7F5C50866FWithout the interaction of other people, my mind has been running amok. I’ve been taking classes, swimming, writing this blog, writing a book and archiving Michael’s writing. I had my DNA analyzed and am in contact with relatives on my dad’s side of our family for the first time. Somehow I’m now actively involved in planning my 50th high school reunion, coming later this fall.

7D1EA6D6-0EC9-4B1D-943A-0C0A85D4539BI’ve seen every movie nominated for best picture this year. I watched my tennis hero, Roger Federer win the Australian Open, live, even though he was playing in the middle of the night. I’ve managed to watch almost every Olympic event, although I’ll admit, I read whenever curling is televised.

And speaking of reading, I’m doing lots of it. Online reading, books, and for the first time in a long while, magazines.  I’m still checking out current cancer research. After conquering the medical websites and learning that I could understand what I thought was beyond my skills, I’ve gotten used to paying attention to where research is going. I’m trying to do art, crossword puzzles and to discover something beautiful every day. I’m moving along at a pretty fast clip, always aware that counting on unlimited time is a concept I put behind me when Michael received his miserable prognosis. Living in the now. Despite the somewhat frenetic pace, some of my activities have built-in periods of stillness and quiet. Listening to music relaxes me and I’ve learned to do ten minute meditations to make sure my head doesn’t explode.

My biggest personal assignment has been rereading all the journals I’ve written since I was a young girl. Reliving your life in undeniable black and white is a challenge. I’ve been embarrassed, surprised, ashamed, proud, emotionally moved and everything in between. Sometimes I can only read them in small doses as I try to digest how I got to where I am. I remember a lot, but understanding many relationships I had and how they changed or disappeared over time has been stunning. Although recognizing that I have the same key problems as I did 45 years ago is disheartening,  I know that my skills at dealing with them have improved.  I wrote only whatever I felt was necessary back then, so there are gaps in time. What was once one way, somehow became another way. I’m missing pieces of documentation which might help explain things better. I know that having saved this stuff is a good thing. But sometimes I feel weary doing so much contemplating of my insides.

But here’s what this is really about.ADB1F59A-2931-4F95-A8DB-50B3335F749C I am a political person and have been for as long as I can remember. I don’t exist in a void. What happens in the culture around me and the broader one of the world affects me. I don’t occupy a small mental space. No matter what the circumstances of my little daily life, I’ve always thought about the bigger picture. Where do I fit? What can I do? When the issues felt too big, I made up my mind to stretch out my arms and spin around-whatever I could touch I would try to improve. I tried to break the big picture into manageable pieces, so I could feel like I was making some kind of contribution, that I could be a positive force to combat some of the negatives in our society. Negatives too numerous to squish into some little blog post.  Family illness, personal crisis and even death have never stopped me from paying attention to what’s going on out there. I’ve never understood how some people manage to stay in their bubbles, detached from anything that doesn’t immediately affect their daily lives. I feel like everything affects mine. One of Michael’s favorite lines about me was that he’d learned that as long as there was someone somewhere who was oppressed, abused or troubled, that I would be too. So I have an overly developed sense of empathy. I guess that made me a drag sometimes. Oh well.

I’m reading what I wrote over 40 years ago. “The totalitarian forces of this society have created fear and madness in the individual and in the mass. Our red, white and blue bicentennial year, ostensibly a celebration of 200 years of freedom is a black comedy extravaganza. Those people up there, at the top with their power and the money, celebrate in their joy of self-delusion.” Thud.

I don’t feel any differently today than I did back then. In fact, I feel worse. The toxicity of our social and political climate is overwhelming. Each day is crazier than the previous one. For a long time I’ve wondered if it would’ve been easier to have Michael die if Trump hadn’t been elected. I think so and thinking that is just mind boggling. I’ve never felt like any president has been my idea of perfect, but obviously everything is relative. The lunacy of this administration and the flood of over the top stupidity and narcissism feels like sitting under an elephant. It’s hard to breathe. The most recent high school massacre and the response from the NRA, the Trump administration and the absurdists on the right have booted me over the edge. The idea spread by bots or whoever the hell they are, that the kids who’ve been galvanized into action about automatic weapons are paid actors enrages me. The systematic gamesmanship in the political arena is abhorrent. The crowd of actors is up at the top, the Romneys and Rubios and all the other hypocrites whose principles morph at the drop of a hat. Not that I ever thought they had real principles. These political hacks are nothing but expedient, always. They are for sale, twenty four hours a day to the highest bidder. Am I jaded? Yeah. That doesn’t mean I’ve given up the fight. It just means that I’m not a fool.

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I worry for these kids. What will be left for them? Can they sustain the energy to keep up the fight? Ending Vietnam took years. Civil rights remain a problem. Our environmental strides are being cast aside. I can’t even begin to talk about women’s rights, the unending siege. Watching people like Wayne LaPierre be applauded for their primitive world views makes me despair. The cultural divisions are so deep. I want to stand with these kids. I want to keep pushing back. But I’ll admit, my anger is getting worse and so is my frustration. I saw Black Panther today. A unique film with unusual vision. Many positive social and political messages. The film’s central themes felt optimistic.4B8B6A74-6E07-41AF-A43B-77C925F469AF

There are people out there who are hopeful. I wish they’d drop by and hang out with me.  Before my rage and bitterness eat me alive. That’s what this is really about. If Michael was alive, he’d feel the same way and know that yeah, as long as there is this much wrong, I’m going to be one angry, hot mess.B46BB441-8D3A-4586-BA6E-85F224254E82

 

My Little Existential Soulmate

8EA445BF-10CB-433A-98DC-38194A3AF5DDI found this nickname in an old greeting card from my husband while going through all of our treasures after he died. I’ve been trying to downsize and organize. During my mom’s last few years, I had to move her three times, from her house to mine, from my house to assisted living and finally to a nursing home. Sorting through her things was really hard. You’d think her possessions  were reproducing themselves in the night. Truly annoying. Stuff is stuff. You don’t want resentment over “things” to muck up your feelings. So when I started looking around my house where we’d lived for forty years and considering my pack rat partner’s stashes, I got busy fast.

The five years of Michael’s illness permanently altered the way I perceive time. We lived from scan to scan and appointment to appointment for years. Long range plans fell away. Moment to moment, day to day became our norm. So faced with the seemingly herculean task of shedding the piles, I’ve felt like I’m racing time. I don’t want my kids to go through what I did. So I’ve been sorting, donating and tossing at a pretty rapid clip. But while I’m trying so hard, I’ve found myself mired in my head, with each task creating internal conversations as I weigh what’s important and what’s not.

I’ve never been much of a materialist. I’m not fashionable. I drive old cars. I care more about how my house feels than I do about furniture or matching dishes or window treatments. My garden looks much better than my living space. I do like books.My guilty pleasure. But I’ve parted with almost all of them. We used to have two rooms with floor to ceiling bookshelves, all full. Now one room has none and the second has only one small shelf. The books I still have are now put in bags to go out the door as soon as I’ve read them. The only ones I’ve can’t part with have strong sentimental value. But as I push myself to get through this process, I feel that existential self breaking through my task-oriented behavior and often find myself just stumped and pondering. Just sitting.  Instead of working my way through each room, scooping up what’s irrelevant and making progress, I’m distracted. The worst impediments to my progress are both physical and psychological. They’re my journals and notebooks of fiction and poetry that suck me in, slow me down and leave me pondering the meaning of life. Just like I always did. The reason Michael called me his little existential soulmate.5A121C05-889B-4AFA-BF8B-DB5E103812BE

E9AA20DB-53BA-477C-BEF6-7C811C4F08F5I’ve got these nuggets going back about 55 years. Crazy, huh? I get to read my growing up. I can see myself at eleven when I was busy deciding who was my best friend and which boy was the cutest and smartest. But even then, I was trying to figure out what life was and where my place should be. I was always a little detached from whatever was going on around me as I tried to find a reason for whatever was happening. I was interested in big ideas. I couldn’t decide if that was cool or not. Even then, I had the feeling that most people felt comfortable gravitating to the median. I never felt that way. But being outspoken and somewhat noncompliant was expensive. My pages are filled with the clash of social norms, the desire to fit in and my natural tendency to deviate from the acceptable. These themes are consistent as I sink into the pages of the past. And I guess it’s not a surprise to find that trying to resolve my inability to just be quiet and fit in remained an issue throughout my life. I developed what I called my internal armor so I could survive the inevitable backlash that you incur when you push against the flow. I remember one incident in particular that really stuck with me. I was in an advanced placement English class with a brilliant, prickly teacher named Ms. Annan. She had a PhD but chose to teach high school and she taught with an iron hand. I think I learned more from her about critical thinking than I did from any other instructor in my life. But she ticked me off because she was so definite and right all the time. We were reading Lord Jim in her class and discussing symbolism. I remember that she had specific ideas about the use of the word “white” throughout the book. In the school lunchroom before her class, some other students and I were discussing alternative points of view in contrast to her opinion. So we went charging into class and when discussion opened, I raised my hand and offered up what my mates and I thought. I still remember her looking at me and saying, “Well isn’t that interesting? Is there anyone else in the class who’d like to support Renee’s point of view?”  The time after that question felt like a hundred years. All that lunchtime bravado was left at the table. My face burned. Finally one guy got the nerve to give a lukewarm endorsement to my, (our?,) theory. I never forgot that moment. I was 15 years old. And I realized I had no tribe. I was a one person show. Which was problematic. Because I really believed in team play. I always thought that numbers meant influence. Being one was so much harder.

Reading myself through the years is wrenching. I spent a lot of time trying to team up, partner up, all the while recognizing that even a teeny deviation from what was expected of me often brought a powerful sense of isolation and disappointment. The worst part was that I felt unseen. On the surface, I could tell that people made assumptions about who I was without doing much digging about the underpinnings of what they saw. I often felt empty. But I presented differently. I wound up with a lot of imbalanced relationships. Often, I was the only person who recognized that uneven status. And there was a dominant part of me that didn’t want to wave my hand and say hey! You’re not getting me. I wanted the recognition to just happen.

Growing up is hard. Sometimes it never happens. People just enlarge and march along without ever probing their depths. That’s been challenging for me. I always want to know more and I think everyone else should want more too. But that’s not very realistic. I’ve chewed on these ideas my whole life. I’ve read page after page, my frustration spilling out, both with myself and others. Getting into a comfortable spot has always been a challenge. I’m not sure that I even really want one. There’s something about comfortable which for me implies stagnation. If I’m not always poking around, trying to think of every angle, I think I might stop growing and adapting to what’s tossed at me every day. I know everyone doesn’t feel that way. They work hard to get into a safe, stable spot and develop a framework that fits over everything. And what doesn’t fit organically can be molded or twisted into that system that makes life explainable for them. And for whatever happens, there’s always an answer. For me there are always more questions. Life keeps me on my toes and I can’t find any configuration that doesn’t require adjustments to the unpredictability of life.

So what does this have to do with my piles of stuff? Well, first I don’t have my soulmate any more. He wasn’t as existential as me but he was accepting and willing to travel all the crazy roads my brain led me down. So that constant supportive resource is gone except for what I believe will be his permanent presence that remains with me. The knowledge that eventually there really was a place for me, and that someone really was always looking below the surface was my anchor. Now I depend solely on my internal resources honed over a lifetime. And that’s ok. But everything takes a lot longer without having a sounding board, so my haste to deal with the concrete, like what needs to be pared down in my house often slows to a crawl. Even as my list gets longer and my need for speed continues to spark my engine. I guess, in time, I’ll figure this out. Or not. And if I don’t, I forgive myself in advance. Life’s too short to be wasted on worrying about stuff. So it’s ok that I didn’t get rid of one single thing today. 

Accidents, Shame and Lies

774EAC62-6381-40ED-8249-A0B7652302F7Accidents have two essential definitions. 1) An event that happens by chance or that is without apparent or deliberate cause, and 2) An unfortunate incident that happens unexpectedly and unintentionally, typically resulting in damage or injury. In truth, I think much of what happens to us in life is accidental. The tiniest, most insignificant twist can change the trajectory of your life path, often without acknowledgement until further down the road, when you recognize that things might have been different, absent one event or because of another.4AB105E6-5CC1-4761-997B-7CC5E377C21D The totaled car in the photo above was the only new car my dad ever owned. A blue Chevy Bel-Air. A dream fulfilled. Dad was quite a character. Before he settled into his grownup career in his mid-40’s, he floated from job to job, sometimes working two at a time. He never finished high school, having quit to take care of his family, his father dead when he was only eight.  He worked in factories, as a credit manager, a traveling salesman and an insurance agent. And he hated insurance. He thought it was a criminal conspiracy to take advantage of the poor. Sounds about right. He found it overpriced and unfair, even as he sold its products and tried to collect premiums. He hated that job. When my parents moved to live near my family, my mom told me she found a box in their basement filled with uncollected premium bills. Irrationally, he rejected the industry that employed him. In any case, he didn’t buy any auto insurance for his new ride. 424AF375-AF41-4197-BC6E-534731E5228FThat decision had multiple implications. My mom never learned to drive. Having insurance for her was a non-issue. When my brother was old enough, he got a driver’s license. How he got away with that is a mystery. No insurance is no insurance. I suspect my dad gave him a testosterone pass, figuring that the two family males would somehow ensure that competence was a thing, and accidents wouldn’t happen. When my older sister turned 16, my brother decided to take her under his wing and give her a chance at the independence offered by a car. Early one Sunday morning, while the rest of us slept, the two of them slipped out of the apartment with the car keys, so he could give her a driving lesson. They weren’t gone long. My sister was anxious and crashed into a viaduct. So much for the new car.

I was about 11 years old. I have vague memories of the anger and angst that this event elicited. I remember the yelling and the crying consuming that day and then the silence. The family needed a car. My younger sister and I were still in elementary school, one which had no cafeteria. We lived too far away to walk home and back to school at lunchtime. Mom was working downtown and dad, who worked in the neighborhood, would pick us up, drive home, make our standard lunch of either scrambled eggs or salami sandwiches, and drive us back to school. Our poor little coronary arteries. In any case, a vehicle was mandatory.

So dad had a friend, the mysterious Mr. Fruchter. According to public records, he ran a half dozen five and dime stores which eventually were absorbed by larger concerns like S.S. Kresge and Woolworth’s. But my mom always implied that he and my dad, who grew up on the west side of Chicago and liked to play poker and go to the racetrack, were a tad shady, with connections to a dark cultural element.

I’ll never know their whole story. What I do know is that Irv managed to provide us with a temporary vehicle, a nice black hearse. DB01EBB2-BDE9-469B-94FF-847E79C39344Yup. Dad would come to our school and pick us up in one of these babies. At the time, I was innocent enough to think this was a great adventure. I’d hop in and pull down one of the little jump seats and ride away in all my glory. I had no clue that this vehicle usually carried a coffin in the rear. The difference of style, the size, the fancy interior made me feel special and I innocently took it in stride. In retrospect, I can imagine what my mom, older brother and sister felt like, driving around in this monster. But the hearse was just a temporary experience. After a while, the beneficent Mr. Fruchter again came to the rescue with a Plymouth Fury, a car my dad drove for the next 10 years, one he grew to love and which he treated as his baby. All this was pretty benign until I grew up and approached driving age. By that time, my brother and sister were young adults. He was still a driver – my sister never attempted to get a license until much later in life. So there I was, faced with the mistakes of my older siblings which would provide the blueprint for my dad’s attitude toward me driving.  I took driver’s ed in school and passed the class. But dad refused to help me practice. 30E0FD35-4D99-4BB7-AF46-225CBAC8993C I was going to be relegated to the ranks of those with no license, no wheels, no freedom. I was so ashamed. I hadn’t done anything wrong. The cost of insurance and the bad judgment of my siblings was going to make me an outcast, different from my classmates who were already cruising around, many in their own cars, others in their parents’ vehicles. I’d skipped a year of elementary school, so I had the advantage in senior year of high school of being only 16 almost until graduation. I could hide behind my age. Sometimes I had the nerve to ask a friend if I could try a spin in her car, but after a block or so, the fear that I might have an accident, that there was no insurance to cover me, was so overwhelming that I stopped asking. I hated the feeling. Weak and powerless. When friends volunteered to lend me a car to do something, I started to lie. Didn’t have my glasses. License is at home. Too tired. Ugh. I was heading off to college without the most basic card in my pocket, humiliated and guilty. Also ticked off. Helplessness was my least favorite feeling.

The good thing about college was that you really didn’t need a car. Mostly anywhere you needed to be was within walking distance. And I knew people who had cars. I never told anyone about my lack of license. I just slid along trying to figure out how to fix this by myself. In my sophomore year, I fell madly in love. With Al,  a guy with his own car. A doctor’s kid. He had insurance, on multiple levels.  We had a tempestuous romance, on and off, on and off. The summer after that year, we both headed home to Chicago for jobs. Then the unexpected happened. An accident. My boyfriend blew out his knee. I can’t remember exactly how it happened but he was confined to his house. He lived near the lake in a bustling neighborhood with lots of traffic. I took the bus after work and headed to his place to hang out. After a few hours, I got up to leave, wanting to catch the bus and get home before dark. But he had a better idea. I could just take his car and keep it since he couldn’t drive anyway. That way I could have a lot more visiting flexibility. The Hornet. A really ugly boxy car-his was a flashy neon blue.IMG_5911I still remember the terror in my body. Couldn’t he see my chest hammering up and down, my heart practically bursting with fear? He just assumed. Normal people know how to drive. No big deal. Take the car and go. Keep it for days, maybe even weeks. My embarrassment was boundless. So boundless, in fact, that I was willing to risk anything to stay hidden. Seven years earlier, my sister hit a viaduct. And now I was in this space and too ashamed to admit I wasn’t “normal.”

So I took the car. I had the audacity to take those keys and with virtually no practical driving experience, ease into traffic, hoping I’d be able to pull off this feat without crashing or getting arrested. And I made it. All the way to my waiting parents who were beyond appalled at my recklessness and deceit. I stuck my chin up in the air and defied them. I felt so free. I built that feeling on the incredibly shaky foundation of fear, humiliation and lies. What a load. I didn’t know how to get out from under it so I embraced it. And suffered internally. But whatever. I took my younger sister and we piled into the car and cruised the neighborhood. We laughed with glee. I was going to break the cycle of the oppressed female relegated to dependence. Sort of. Eventually I returned the car to Al, who got better. Anyway, we were in one of our breakups.

But I was intoxicated by driving. So one evening after work, I stole my dad’s keys, like my brother before me, and took the Fury from behind our apartment. The Plymouth was a much bigger car and felt unwieldy. As I drove around, I couldn’t gauge it’s width and eventually scraped a parked car. And to my shame, I sped away, quaking in fear. I was so wobbly in traffic that within minutes, I was pulled over by a cop. Through a mixture of sincere hysteria and excuses about breaking up with my boyfriend and a misplaced wallet, I talked my way out of a ticket and limped home to face my father’s wrath. No more driving that summer.

I headed back to school for junior year, still license-free and trapped by the emotional quagmire I’d created for myself. I had a few more driving opportunities in other people’s cars, still lying and feeling terrified. My relationship with Al continued its rollercoaster status. That summer I stayed in town instead of going home. That summer, I met Michael.

I’d heard about him for years through mutual friends but we’d never crossed paths. One night, we both showed up as wedding guests at a crazy all night party. We had an instantaneous connection. And we began to build on it steadily, spending a lot of time together and finding trust. After 6 months, I realized that I’d found whatever a soulmate is supposed to be. A few months later, we were living together. The weight of all my shame and lies lay like rocks on my spirit. For the first time in my young life, I felt safe enough to confess all that I’d been hiding for years, from the kid white lies to the driver’s license saga,  and everything in between. What immense relief. My 21st birthday was coming. On that night Michael handed me what appeared to be a jewelry box. When I opened it, there were car keys inside. He’d scraped together $150 to buy me a car. A white Chevy Impala. He was going to help me hone my driving skills and take me for my driver’s license. Free at last, from the whole wad of accidents, shame and lies. The great irony-on the first day of owning my car, Michael was driving it and someone slammed into it. Totaled. So totaled that we got more money than he’d spent originally. Enough to buy me my first real car, the one that helped establish my independence. The car I loved. Like my dad’s first new car, a blue Chevy. Bliss.67CA5CE8-5FD5-4937-B0AF-7D011AFD4E3926644815-d7af-42e8-bf73-130e1f22f156.jpeg