Almost nine months have passed since Michael died. Sometimes it feels like a few seconds and other times it feels like he’s been gone a thousand years. I’ve attacked this new life that was forced on me. My nature is essentially aggressive. Hanging around waiting for things to happen isn’t how I roll. Throughout our five years of contending with Michael’s prognosis, I could feel myself living a dual existence-part of me was exquisitely aware of the importance of the present while another part was down the road, trying to imagine and prepare for life without my partner. I often thought of myself as living like Grateful Dead art, one foot in the moment, the other spanning a long stretch of time.I did everything I could think of to make the best out of this new life. I’ve had therapy and attend a grief group. I’m swimming regularly to recover the strength I lost while being a full-time caregiver. I’ve taken classes to stimulate my brain. When I want to cry, I let it happen. I’ve gone to the movies and bingewatched lots of tv shows.
I’ve journaled steadily and written dozens of letters to Michael to relieve the stress of missing him. I’ve taken two trips by myself to establish my independence. I’ve helped other people who are sick or grieving. I threw a big public event to honor Michael which drew 500 people and for which I prepared every exhibit. I curated his life and it worked. I adopted a rescue dog. I’m still a source of comfort and support to my kids and grandkids. I’m a good friend. I started this blog. And I’ve started the book that I want to write about what it’s like to navigate our pathetic health care system, and how we lived while going through our experience.
A lot of stuff, right? My therapist told me she’s never seen anyone try so many things and work so hard to try to get better. She said I’m not only turning over all the rocks and looking underneath them, but have actually gotten to the pebbles. And I HAVE been working on my mind and my feelings, trying to understand as much as I can about who I am and how I got here.
The cushion of my lifetime love has supported me. I’m not lonely for anyone but Michael. I still miss him every day. But I feel him around me and inside me, especially on those unpredictable difficult days that just happen. Music helps a lot. So it sounds pretty good, right? That’s what I thought too. I’m working my brains out. So the book. I started it about a week ago. I knew that important resources for it would include the medical records I’d saved since the initial diagnosis, and my journals, my steady companions since I was an adolescent. They would help me flesh out what I want to convey, not just facts but all the feelings that go along with this kind of journey. Since Michael’s death, I’ve been slowly re-reading those journals, hanging out in the ones from the ‘70’s which are somewhat embarrassing, but are also filled with the beginning of my love for Michael. Being immersed in those pages has been beautiful and wistful and comforting. Looking back at the initial stages of our relationship has been my pleasure. I’ve savored every page, note and letter. But for the book, I decided to haul out the ones from the mid-2000’s to the day of diagnosis and beyond.
I started reading. I was in the stable peaceful years of The Before. Before Merkel cell cancer. The events and ideas I was exploring were meaningful but primarily benign. Events involving the kids, ideas about aging, musings about the meaning of life.
Suddenly I started feeling very nervous, anxious. I got to the pages immediately following diagnosis. My breathing accelerated considerably and I could feel anxiety building in my core. Then I sensed panic creeping to the surface. I couldn’t believe it. I realized that if I kept reading I was going to be a combination of hysterical and paralyzed. I closed the journal. I felt like I’d been standing in the sea with my back to the waves. And an unexpectedly huge one had bashed into me and tossed me into that fearful place of wondering if you’ll drown or be able to get yourself together enough to make it back to the shore.
I managed to get out of the house and into the pool for awhile but I was seriously disturbed and off-balance. Why? With all the soul-searching and me confronting my feelings, was I suddenly in this uncertain scary place? Where was safety, stability?
The water was always a place of great comfort for Michael and me. Living in a landlocked part of the country was kind of a bad joke we’d played on ourselves. I was comfortable in that environment. So why the buffeting about and the sinking feeling? I went back home.
As I limped indoors I started thinking that I felt like I’d been in a war. I was flattened out. I know I’m still sad but this felt bigger than sadness.
I started thinking PTSD. And feeling kind of guilty about it. Comparing myself to people who experienced the horrors of war seemed arrogant. One death? Pitiful. Like hitting the couch with the vapors and being a drama queen. I found myself appalling. But then I started thinking, researching and reading. Remembering. What the original terrifying diagnosis felt like, and the first surgeries and subsequent treatments. The three month checkups. Always knowing that the stage of Michael’s disease made long term survival virtually impossible. Second opinions and endless research. Getting to the year anniversary of the beginning of terror. Arguing with doctors about scans and protocols. Fighting, always fighting. Being told that the survival odds had just increased and then a few months later, being told that cancer was back everywhere. Two or three months to live, maybe a year with treatment. More research, stretching across the country, questioning one doctor after another. Unimaginable emotional swings from despair to joy, from pain to bliss.
There is a big hole in the research about what happens to people taking these rides. Especially when they end. A lot has been written about grief. I hate a lot of it. Rules and timetables and steps that are put forth as givens. As a person who always felt like an outlier in life, I am left cold and annoyed. If I’d followed rules and protocols when Michael was alive, he’d have died sooner. I’m no more likely to follow the grief rules than the life rules. And there’s very little about PTSD and caregivers, who help their loved ones survive and then help them to their deaths. I know that the wild swings of the past few years have taken chunks out of me. Eroded me bit by bit. I don’t expect to ever feel the same as I did in The Before. And what I learned in this past week was that no matter how hard I try, I can expect to be blindsided by grief, terror and panic. I need to find ways to get through those times as best I can. People should know this stuff. We need more resources. Looking for them in the midst of pain is really hard. Here’s a link to an article that I found helpful, albeit the different circumstances.
I’m still living life one day at a time, mindful of everything Michael was willing to tolerate in order to wake up the next day. Trying to honor his tenacity with my own. Inch by inch.
This is where I lived for the last part of elementary school, right across the street from Horace Mann Elementary School, and through my high school years at South Shore. The high school art teacher, Miss Novelle lived in the apartment below us with her parents. I thought that was weird. I never could figure out where teachers belonged back then. Moving to this building put me into closer proximity to my friends. Fern lived around the corner and down the block on Jeffrey. My friends Judy and Brenda lived around the other corner to the south on Chappel. We were on 81st Street-right on 83rd Street was the famous Carl’s Hot Dogs where a buck bought the most delicious dog wrapped in greasy paper with fries, the genuine Chicago hot dog unmatched by any other. Bliss.
A lot happened while I lived at 2019 East 81st Street from 1963 to 1968. Looking back, I realize that the convulsions of the culture at large were the overarching backdrop for my own smaller drama, the drama of growing up. I well remember the events that had the greatest impact on my political views and social conscience.
I remember watching John Kennedy trying to explain the debacle that was the Bay of Pigs. I stood behind my father with my hand on his shoulder while we listened. I asked dad if there was going to be a war and he told me he didn’t know. That admission was terrifying, realizing that the grownups didn’t have answers that would provide a sense of safety and comfort. That was the beginning of having childhood stripped away. I was eating lunch at home by myself when Kennedy was killed. I walked down to Judy’s house to be with people and then we silently went back to school to begin the weekend of mourning. My baby cousin, only 21 months old, died of bronchiolitis while we lived there. My older brother and sister were gone, off to the Air Force and college respectively, and we’d suddenly become a family of 4 instead of 6 in far less cramped quarters. The current events were fearful and unsettling. Civil rights clashes were more pronounced and deadly.
In 1964, just before my freshman year in high school, three young civil rights workers were killed in Mississippi. The following year, Malcolm X was killed in New York. The Watts neighborhood was in flames in 1966 while the Viet Nam war escalated.
In 1968, the year I graduated from high school Martin Luther King and Bobby Kennedy were both assassinated. During the Democratic convention later that summer when I was seventeen years old, there were riot police on every street corner downtown where I worked every day. I took the Jeffrey 5 bus up and back every day and on those long rides, I thought very hard about patriotism and rebellion, right and wrong and seeded my future beliefs in that considerable time of reflection.
But I’m getting a bit ahead of myself. I was growing up in tumultuous times. Perhaps all the times are tumultuous. I kept a diary and then a journal starting at about 11 years old. I still have all of them. Although I wrote about school, current events and family, I spent a great deal of time writing about my friends and frequently, boys. I was somewhat flitty in my feelings, but from 5th grade on, I had a mad crush on a boy named Danny. He had dark hair and soft brown eyes. I remember liking to describe them as limpid pools, a phrase I’d read in some book. I was a singularly loyal person.
By the time I was 12, I was sure I’d love Danny for the rest of my life. But I was also pretty calculating. I knew very well that as kids, relationships and love came and went, often so fast that you barely knew they’d happened. I myself had other crushes, even while being internally devoted to Danny. I decided to spend my time becoming his great friend, hoping to make a transition to love some time down the road when the odds were better that it would stick. And so began my great campaign.
High school proved to be a challenge in discipline for me. After my freshman year, what seemed to be a deeply ingrained sense of anti–authoritarianism began to assert itself. I liked learning but the expected regimen for someone with my “abilities” wore me down. I gave up worrying about grades after my freshman year. They dulled my senses. I still read all the time, but not necessarily anything to do with homework. In my sophomore year, my smart and intuitive biology teacher, Mrs. Coleman had a meeting with my parents and suggested they look into sending me to the lab school at the University of Chicago so I could work at my own pace and have more control over my studies. That was financially impossible. So I skidded along in my honors classes being a relatively mediocre student with occasional flashes of brilliance. The system was grossly unfair. My “C’s” in my honors classes earned me a place in the National Honor Society which more rightfully belonged to a hardworking “A” student in regular classes. I was learning life lessons that would shape me down the road.
In the meantime, I was trying to do the normal social things. My first real high school date was with a guy named Denny that my male friends thought was great. We went on a hay ride where I was huddled into myself to ensure that no part of me ever touched a part of him. I pledged a sorority which made me acceptable and also somewhat ashamed of myself as I really didn’t believe in exclusive clubs. Eventually, I got my friend Fern into it with me. We had fun playing volleyball and also putting together a surprisingly sophisticated musical event called The Sing. I actually performed on a stage at McCormick Place.
I was lucky enough to see The Supremes, The Temptations and The Beatles. I had a penpal from Liverpool. I kept a close eye on Danny, finding ways to make myself his reliable friend, to become indispensable. By the time we were juniors, we were pretty close.
I dated his best friend, Rich, on and off for years, and we laughingly pretended we were like TV wrestling celebs, The Crusher and The Bruiser, who shared a girlfriend named Lil. I really liked my boyfriend but he knew nothing of my long, secret campaign to win Danny. In that junior year, Danny ran for student council president and I ran for treasurer. We worked together on our campaigns and I reveled in the time we spent alone strategizing. His parents had two cars which was unimaginable to me. One was a silvery blue Chevy Malibu. I stood in the third floor window, waiting for it to pull up in front of our apartment. I still remember the license plate-PD1502.
When we won our respective elections, there was a big social event at school during which the old officers would announce the new ones for the following year. We stood behind a curtain, waiting to be called. For a brief second, he held my hand and squeezed it. His hand was dry and warm. One of the exciting moments of my life. My birthday was at the end of May, right before the school year was over. I turned 16 on a Thursday and that Saturday, Danny, who was attending some school leadership conference, said he wanted to stop by and drop off a present. I got all dressed up for the 5 minute event. Talk about hitting me in my sweet spot. He handed me Sergeant Pepper, newly released and the stuff of my dreams.
That summer, my parents got kind of flush with cash. I guess that being four instead of six helped. My dad said I could either go to California with my mom and sister to visit family, or take a trip offered through South Shore to Expo ‘67, the world’s fair in Montreal. As if I had to think for a millisecond. Danny was going on that trip. A dream come true. We packed up and boarded a Canadian National train for what to me, was a long ride that could’ve gone on forever. Fern was there and a few other good friends. Even today when I see the CN logo, I’m flooded with great memories.
We had surprisingly little supervision. I think kids must’ve seemed older back then, because we were treated as if we were responsible. At least in my crowd. We stayed in groups of girls and boys in little apartments and all gathered to catch the Metro to go to the exposition. I remember wearing dresses and skirts which seems so impractical now.
The metro was always packed and when we arrived at the exhibits we wandered around together in a group, exploring and tasting exotic food. The first time I tasted tandoori chicken was at the Indian pavilion in Montreal.
One morning, we were all jostling to get on the train and there just wasn’t enough room for Danny and me. I could barely contain my excitement. A whole day alone with him. Six years of dreaming and finally, all my imagining was coming true. What a magical day. So innocent and sweet. We wandered around holding hands and never saw anyone we knew. A secret bubble. We walked and talked and by evening were ensconced in a gondola on a big Ferris wheel where Danny actually did the move-a fake yawn and stretch which wound up with his arm around my shoulder. That was it. A tender memory to relive over and over. The trip ended and we went home.
When senior year started, everything went on as if nothing magical had happened. Danny moved from one girlfriend to the next while I stayed with his best buddy for the most part. Then one wintry afternoon, he and I drove downtown to attend another one of those conferences that looked so good on what we still called a resume. The meetings were boring but I didn’t care. I was just happy breathing in the rarified air of just us two. On the way home, the snow fell hard and the trip took forever. We started talking about how strange the next year would be when we’d be apart for the first time in our short little lives. And the next thing I knew, he was telling me he had no idea what he’d do without me, and reaching for my hand he confessed to feeling that long-awaited word-love. I remember exactly what I was wearing that day, a loden green box pleat skirt with a matching cable knit sweater. Green right down to my tights.
We decided that we would attempt a sneaky romantic relationship and tell no one in case it didn’t work out. Our first date was at Due’s pizzeria in downtown Chicago. That involved a lot of staring and giggling discomfort. I was disappointed. I’d been waiting so long for this moment and it was far from memorable. The second date was just driving around and talking but we did make a stop at Carl’s hot dogs for a late night snack. When Danny drove me home, he was walked me upstairs and I stood expectantly at the front door, hoping for the long-awaited kiss I’d imagined since I was 10 years old. I can still see him in the hall light, wearing a light blue shirt under a slightly bluer v-neck sweater and a tan shearling jacket lined with cream-colored fake fur. Even today, I’m attracted to those jackets. Anyway, he said goodnight and I realized he was just going to turn around and walk away. I remember thinking, no way I’ve gotten this far and nothing’s going to happen. I grabbed the collar of his jacket and kissed him. It was a sloppy mess of scraped teeth, mushy lips and the taste of mustard, onion and bright green relish that make a Chicago dog a Chicago dog. And that was it. Danny moved back to the friendship chasm without a word and I was too embarrassed and proud to say another word about it. Senior year drew to an end and I went to prom with my same boyfriend while Danny had moved on to someone new.
That fall, I went my way and he went his. We stayed friends through most of college and as juniors finally were able to discuss what he thought was the impossibility of “us.” He told me I was a great friend but a little too challenging for him as a girlfriend. Oops. I could never keep my mouth shut. Yay for me.
We lost touch after college. Once, about 15 years ago, I found him online and sent him a birthday greeting-no way could I have ever forgotten his birthday. We exchanged pleasantries and then fell away again.
I’m glad I grew up when and where I did. The world around me was alive with ideas and principles and action. I lived in a multi-racial neighborhood and was always pushed to think about issues outside my little, personal space. While I was a normal kid with romantic dreams, I was also getting a broad-based liberal arts education which helped me navigate the challenges that faced my generation.
From South Shore High School, I was getting ready to step off into college where I would confront the choice of whether to stay in the mainstream which was where I floated in my high school years or to step outside and move into a space that was better suited to my independent spirit. That story is next in this abbreviated recounting of my life.
This is a before story, before my life with Michael which began at age 20 and is still going on, despite his death in May, 2017. Going back into these old memories is a welcome respite from the grief process. Innocence and simplicity. Treasures.
Last year was my 50th high school reunion. I was one of the key people hunting for classmates. I found Danny who’d been living abroad for many years. He wasn’t able yo attend the reunion. But a few weeks ago, while on a business trip in Florida, he arranged a layover in Chicago and asked if I could come up and see him. I did and along with our old friend Rich and a few other classmates, I finally saw Danny again, after 49 years. A wonderful and touching reunion. The Crusher, The Bruiser and Lil, together again. How great was that?