Renee Rocks

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. 

 

 

Recently, I’ve been compiling a list of all the goofy phrases and inside jokes that Michael and I used to toss around. I remember  when our daughter went to college and started expanding her movie choices, she called us and said she was appalled to find out that half the lines we frequently threw at her were swiped from movies like The Godfather and Animal House. Gotta love the enlightenment of your kids. I’m hoping the list provides my family with laughter and great memories. Which brings me to the next subject.

Michael and I spent 45 years together. Today, I was stewing over the way I feel about the platitudes I get to hear from people about my grief process. Like never say never, one of my favorites. That’s the one I hear when I say I have no interest in marrying again. I’m told that in time, I’ll change my mind. That it’s too soon for me to know how I’ll feel in a year or so. When I say I know exactly how I feel, I get these knowing looks. I find this intensely annoying and presumptuous. What in the world makes a person think that grief makes you lose touch with the self you built over a lifetime? That pain makes you incapable of any rational thought? I find this attitude mysterious. I don’t attribute any maliciousness to it. I just think that assuming I’m missing something that others know is an error in their judgment.

I was the third of four children in my family. Birth order has multiple advantages and disadvantages. In my case, I felt three was a pretty decent spot. I got to watch and learn from my older siblings, in addition to my parents and their extended family. Dysfunction can be pretty glaring looking up from the cheap seats. By the time I was in my teens, I had a pretty good idea of what I didn’t want in my life. Sticking with the program I designed for myself was sometimes isolating and painful. But what I knew with absolute certainty were the following personal parameters for me: 1) I was never going to pretend I was stupid, even if it seemed that boys didn’t like the fact that I had  opinions and a lot of attitude, 2) I wanted whoever I was with to be a real friend and not just a love interest, and 3) I didn’t want a lot of regret in my life. If onlys and what ifs just don’t work for me. And I was lucky because I had those parts of myself figured out. Of the four kids in my family, I was the only one who never divorced. I consider that a good thing.

When Michael and I met in 1971, what happened between us remains as mysterious to me today as it was then. Mind melding? A collision of souls? I don’t know. With all the language at my disposal, I’ve never been able to pin it down. We had an instantaneous connection and intimacy. We became best friends. We were each involved with other people romantically. But as months went by, I knew we were headed somewhere different. I was terrified to try the transition from friends to lovers, fearful of losing a relationship that was magical and unprecedented. As I headed to Europe with two friends in the beginning of 1972, I called Michael and said, “guess what, I love you,” to which he replied, “far out.” Yup. And I left the country for a few months. Upon my return, we needed to disentangle ourselves from previous relationships. I showed up on his doorstep with my suitcase and announced that I was moving in. He asked where I’d sleep. I answered, your bed. And that was when our long road together truly began. I was twenty, he was twenty-two.

There were some tumultuous times. We were discovering each other and trying to figure out if we could make a lifelong commitment to each other. For a time, I was troubled by doubts. Michael’s response was to sell a catalog of his work, buy me an airplane ticket to California to see my oldest friend Fern, so I could decide if I wanted to stay with him. True friendship, the bedrock of who we were together. We got married the next year.

We grew stronger together with each passing year. And we grew stronger as individuals. Michael was a feminist and I benefited constantly from his support and irritating pushing. I think he’d say the same thing about me. We made babies and lived through failures and deaths and uncertainty. We had hard times and incredible joy. We were constantly amazed that we were never bored with each other and that our passion kept growing, right alongside that steady friendship which was our go-to place when times were tough. It hauled us through everything.  

And then Merkel cell cancer entered our lives. That wasn’t supposed to happen. Michael, whose youth was spent lifeguarding and doing water sports was a red haired guy with a family history of skin cancer. So he faithfully got checked every three months and had multiple growths removed, as did his parents. Nasty Merkel came fast and hard. His dad died at 98 and his mother is still alive. How could he have this dreadful prognosis of only a few months? Impossible. I became a researcher. Those few months he was given to live in 2013 turned into years as we pushed for treatments. Our years in tandem served us well, as we sunk in despair and then pulled each other up to be the best we could be with each other as long as we could. We made memories which cushion this time without him. He left me music, a mourning quilt made of his clothes and a heart necklace engraved with his writing. And stacks of notes and letters that surround me with love. 

So when I say I don’t want to be with anyone for companionship, it’s because I’ve already had the best friend and best love I can imagine. And I had it for a full life, not my whole life, but a rich, extended one. I’m not lonely, except for him. The rest of the time, I’m busy trying to find the most positive ways to finish off what’s left of my time.

Like compiling Michael’s humor and writing for our kids. Like writing this blog and the story of our journey through a rare disease. Like appreciating nature and music and taking classes and being a good mom, grandmother and friend. When I think of Michael watching me fend off unasked for advice from well-meaning people, I know he’d be pissed off and select one of his choice dismissive phrases and tell me to have at it. So I will.

Take a hike, people. I know what I want, thank you very much. 

 

 

This bookcase was built my maternal grandfather. I don’t know how old it is. When I was seven, it was the only bookshelf in our apartment. We had a set of World Book Encyclopedias, but I think they were stored on a built-in shelving unit in the living room.  Back in the 1950’s, there were no empty spaces on grandpa’s shelves. Now, it reflects my efforts at downsizing.

I believe in downsizing. I think living with less is a worthy goal, and I’d like a smaller carbon footprint. After 40 years in the same house, the accumulated stuff can get very cumbersome. After moving my mom three times and having to make decisions about her things,  I’d like to lessen the load for my kids. The idea of them grumbling about my treasures after I’m gone makes an unattractive picture. But my books. I could never get enough of them. I’ve already made multiple donations to libraries, books for prisoners and more. It’s getting to the place where the ones I still have feel essential to being myself. I don’t know if I can send them out the door. 

I love reading. As a kid my grandfather’s shelf with its limited collection was a magnet for me. I started with the top shelf, first book. When I finished that one, I replaced it and moved to book two. Eventually, I read them all and went back up to shelf one and started over. The books belonged to all of us, but I thought they were all mine. The constant re-reading I did became part of the family lore. I probably read each one a hundred times. Some of them were way too mature for me. Gone With the Wind, Peyton Place, Hawaii were all very instructive, albeit inappropriate. But no one stopped me. I liked mythology, especially The Iliad. Nature books, too with illustrations of birds, trees and insects. I read the World Books. My favorite volume was “D,” which featured beautifully painted pictures of all the dog breeds. I couldn’t let it go with the rest of them.

Books were my safety net. They shut out the emotional chaos of the world and didn’t require anyone but me. Acquiring them became my life’s quest.

When I was 8, I suffered a broken  nose in gym class. I was trying to avoid tumbling which I hated. When I tried to con the teacher out of doing forward somersaults because of bobby pins in my hair, he made me run to his desk to pull them out. I slipped and wound up face first right on the desk corner. I stood up, trying not to cry but I felt wet. Looking down I saw my white gym blouse saturated with blood. The teacher wiped me down and sent someone to get a sweater from my locker. I went back to class.

That day, my sister and I went to lunch at our aunt and uncle’s house. There was no lunchroom in our school. I was biting into a tuna salad sandwich on pumpernickel bread, sliced in triangles, when my uncle walked into the kitchen and said, “now that’s what I call a  broken nose.” I lost my appetite immediately. Later my mother came and took me to Dr. Weiss, one of the early villains of my life. He pressed and prodded, all the while asking if it hurt. I lied every time but he said that I needed to get it reset immediately, the next morning. I told him that I’d do it as long as I didn’t have to get any shots-no needles, to which he agreed. We left his office and  I cried and cried until my mom told me I could eat anything I wanted for dinner. We settled on a big bag of Tootsie Rolls. The next morning I drank some bitter potion mixed with a bit of orange juice and off we went to the hospital. Imagine my horror as the first event featured a gruff nurse who said I needed a “hypo.” Shorthand for a hypodermic needle. I cried and argued and told her about the doctor’s promise but alas. That was my first experience with bald faced lying by adults to a kid. At least the first one I knew about. The rest of the prep time I explained over and over about the promise but they stuck me anyway and as I counted backwards from a hundred,  I was a bitterly angry kid. When I woke, I had a cast on my nose held on by two elastic straps around my head.  I was hungry. I was in a children’s ward and it was dinner time and I could smell burgers and French fries on the trays being carried in to the other kids. When my tray came it had one measly rubbery square of lime jello. I was so done. The doctor came and said I needed to spend the night. An eight year old’s version of when hell freezes over came out of my mouth. They said I could leave if I could get to my dress which was hanging on the curtain rod above the bed. The dress was black with red, white and gray polka dots and I slithered my way into it for the win. When we came home, my parents told me I could sleep on the couch in the living room. I felt so special, utterly unaware that their intent was to protect my sisters from the expected disturbance from the drugged-out little patient. But even better, my dad had gone out and bought me a collection of books based on the films of Shirley Temple. And they were definitely all mine. I’m not sure if ever felt so special. I’ve kept them for 58 yearsEventually I became more autonomous and aware that my lust for books was unmatched by both my parents’ income and the space in our apartment. I discovered libraries, plowing through biographies, history and sports stories.

I read popular series of the time, kids’adventure books, mysteries, and animal stories that shaped my life choices as I grew up. I loved the Albert Payson Terhune books about the Sunnybank collies which had such a powerful effect on me that the dogs of my life were all that breed.

The Black Stallion books are still in my house. All those childhood books were a refuge from family problems, money problems and the limited lifestyle that my parents chose, perhaps by necessity, perhaps by inertia. They were my intellectual foundation that I built on and my endless reading forned me internally, page upon page, empowering me to believe there was a beyond, a future, a different space that I could reach by stacking up the words so high that I’d vault over the limits of my youth. I don’t really believe that I need the actual books any more,but I have a sense of loyalty to those tools which gave me the strength and courage to move beyond my childhood constraints. How do I downsize those pieces of my history? I don’t think I can and I forgive myself. I’d rather sleep on a pallet than give them away. 

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. 

Post script:

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?

These days my mind wanders. A lot. I’ve finished the eighth month since Michael died. During our 45 years together, it seemed that my whole life happened while we shared with each other. I was only 20 when we started. Remembering everything we experienced often overpowers me with pain that is physical, wrenching gut pain. Sitting with it is just too much. So off my mind goes to other places, seeking relief.

I don’t know why my memory has always been vivid, packed with detail, both visual and aural. I know that there are mnemonic tricks that you can use to train your mind to remember, essentially creating a mind palace to use as a tool to access information. I’ve never needed to do that. The inside of my head reminds me of those children’s pop-up books, the ones where each page turns into a 3D structure that you can walk through and touch. When I pull away from my thoughts of Michael and me, I drift into the before, my very early years and am suddenly in the midst of a different type of experience.

The picture above is of a restaurant in Sioux City, Iowa where my family lived from the time I was 8 months old until age 7. The Green Gables. We rarely went out to restaurants because money was always an issue but on special days, we went there. In my mind it looked so much bigger than the building in the photo but I know that my child’s perspective accounts for that. I remember my favorite food was their massive turkey club sandwich with real turkey sliced from the bird, juicy tomatoes and lettuce, and enough mayonnaise to ensure that my mouth always needed mopping as I ate. I dreamed of going back there but then realized it was better to leave the memories in place so they could never be altered by my grownup perceptions. 

In Sioux City we first lived in a rental on 17th street. We had a blonde cocker spaniel named Trixie. When she went into heat, mom muttered and grumbled, mopping up spots from the floor and eventually putting Trixie in a diaper. I was about 3 then and the diapers were from my little sister. Trixie bit me in my armpit and we got rid of her. In that space, sunlight came through the kitchen window and I’d stand still and watch the tiny pieces of dust moving through the air like tiny fliers. Fairy dust. We only lived there a short time. Eventually my parents were able to buy a house and 17th Street disappeared. 

This is one of the few pictures I have of our house on 23rd street in Sioux City. The photo was taken from the rear.

It was the only house my parents ever owned. It was big and hard for my mom to manage. My brother bred white mice in the basement. When they were born, I was fascinated by their naked pink squirmy bodies. We had bats in the attic. I can see my mom chasing them, brandishing a broom at a sheer curtain or the baseboard by the door that led to the attic. I am sitting in the kitchen, watching her press a glass into cookie dough, the round shapes pulling away and then laid carefully on a sheet for baking. I played outside all the time. We had neighbors called the Brewers and the Larimers. The dad in the Larimer family was a doctor. Their home and lot were really massive. Their kids  were Robin, Charlie and Janie. Robin was my age and was my first love. We played imaginary games in which he played the dual roles of noble fly and nasty spider. I was always the butterfly in distress, constantly in need of rescue. Thinking about that makes me laugh because I was a rugged outdoor girl with a sense of confidence. But we played it that way anyhow. The Larimers were Scottish and each summer they had a huge barbecue with bagpipers and what they called a weenie roast. Still makes me laugh. I had my first drink of orange soda pop at one of these grand events and was astonished by the carbonation bubbling up my nose. I liked milk.

I had a tricycle named Silver after the Lone Ranger’s horse with pink, green and white plastic streamers that blew at the ends of my handlebars. We had a new dog, a collie mix named King who was gentle and once came home carrying a baby raccoon in his mouth. My mom fed it strawberries which it pulled apart with its black, leathery fingers. We called it Mario. I can’t remember what became of him. I stayed outside as long as I could every day. My dad called me Chief Blackfoot which hurt my feelings.,My mom gave me jars with air holes punched in the lids for oxygen. I filled them with twigs and leaves and hunted for caterpillars which I hoped would cocoon and turn into butterflies like me. There was a tall stand of hollyhocks on the corner and I’d stand very still and watch bees disappear into the depths of their centers and wonder if they’d ever come out. When they did, if you stuck your nose in after they left, it would come out yellow, covered in pollen.

Once, there was a big flood in our town and my dad wrapped me in a rough blanket and carried me to the house on the highest ground where Mrs. Monroe, who lived there,  said we could stay until the water receded. The next day, I went with dad to find our car which had floated down the block and was stopped from disappearing altogether by a sturdy fence. Life was full of adventure.

 

This is a photo of Hunt School where I went to kindergarten and 1st grade. I really loved my kindergarten teacher, Miss Wyfles. My mom had surgery the year before I started school and I was very upset by the possibility that people could vanish from their proper places. Every day I asked my mom if Miss Wyfles would be in school and if she’d be home when I got home. And instead of saying maybe or usually, she always said yes. One day Miss Wyfles was absent. Evidently I threw such an enormous fit that my sister who was 5 and 1/4 years older than me, was sent for to talk me off the ledge.  She said my eyes were big as saucers and I was totally rigid. The first terror I remember. But I liked school. I liked my rug used for naps and the carton of milk we got before we slept. I remember our cloakroom-in the winter, the teachers were always reminding us to stand our rubbers up straight so the insides wouldn’t get wet. Those ugly black boots which had clips to snap together. I was glad when I finally got a pair of red boots. I also remember our air raid drills, thinking all the while that my arms probably wouldn’t do much to stop a bomb if it fell right on top of me. 

Once, my sister forgot me at school. I was supposed to meet her on the front steps so she could walk me home. Eventually all the kids had gone except me. I can’t remember how I figured out how to make my way but when I appeared at the top of our slanted block, people were calling and looking for me.They were so glad to see me and proud of me for finding my way.  I always thought my sister figured if she left me there I might never come home. That was the beginning of my being industrious and streetwise.

Sioux City didn’t work out for us. We were moving back to Chicago and had to leave King behind because he couldn’t live in our apartment. Robin took me to the big toy room in their house and said I could pick out any toy I wanted. I chose a metal horse with 3 legs. He kept some of our fish which he held in a bowl, alongside his siblings and his parents who waved goodbye as we all looked sadly out the back window of our car. After they faded from sight, I asked my parents if there was milk in Chicago and how you got to be the first car on the road.

There was a before. Remembering it helps with the now. Someday, there may be an after.

 

When I was younger, I remember having a conversation with my older sister about hard times that invariably appear throughout life. How do we handle them? What’s the go-to response when things get tough? She told me that she always relied on her body for managing the challenges. I was so surprised. For me, it’s always been my brain. I’ve always thought that by turning inward and digging deep into my mind that I could manage almost anything. Michael would watch me thinking and roll his eyes and say, “ more brains.” I think it’s a quote from a Night of the Living Dead movie. He referred to me as his existential little soulmate.

I think that’s a pretty fair assessment. A lot of people view space as the final frontier. For me, the space between our ears is the most mysterious and still relatively unknown place for exploration. In the past week, I’ve read two interesting articles about the brain. One was about whether or not there are structural differences between the brains of highly creative people and everyone else. The other posited that there may be a universal brain Wi-fi system that connects all of us. That when we get a feeling about someone and suddenly your phone rings and you hear that voice, it’s because of a transmission rather than a sixth sense. I’m really interested in all this stuff and figure I won’t live long enough to truly know all the answers about what’s in my head or anyone else’s. But there are some things I feel really certain about and I’d like to share them.

If you’re not constantly questioning and wondering, you run the risk of getting stale, thinking you’ve got all the answers. We live in a perpetually evolving state, inside and out. Getting too comfortable and taking anything for granted is a dangerous trap. Especially if you don’t like unexpected bad surprises. No one knows what’s around the corner or a phone call away. Staying plastic and flexible in your mind helps when life dishes you a piece of darkness. 

Then there are the tricks that I’ve worked hard to develop that always work for me. My two most annoyingly repeated pieces of advice, especially if you’re one of my kids, are the following: 1) If you want to have a good life you need to develop excellent coping skills. People with the best lives have done that because most of life is about coping. Poor skills=poor life. 2) There’s a 5 year rule. When you’re smacked down in a hole by a life event, stop and ask yourself what you were doing exactly 5 years ago today. I mean exactly. Unless you’re one of those unfortunate people with total recall, you won’t remember. Just like you won’t remember the monster you’re dealing with today, 5 years from now. Not in the same way, at least. Indeed, perspective is everything. It all winds up in the rear view mirror.

I have a few more techniques that help me manage the unmanageable. One is by making sure I look back and comb through my history and my experiences. Often, I find something back there that shines a light on the now, some nugget that drops a useable tool in my my mind that helps me navigate today. Stuffing all your negatives away is a good way to get an ulcer. Looking them over demystifies and normalizes almost anything. And there are little gems hidden in those memory banks.

Finally, there’s cutting whatever the monster is into manageable pieces. I saw this cartoon in a newspaper once-it was a giant ball rolling downhill and there were feet, hands, heads and other body parts sticking out of it as it swallowed everyone in its path. Don’t get sucked into the giant ball. I usually sit down and write about whatever is happening, working my way from the worst parts to the less painful. I look for tiny pieces that I can somehow manage and manipulate rather than letting myself get completely flattened by the weight of the pile. Baby steps take time but after awhile, the impossible becomes doable and little pockets of being okay reappear. A process that for me is a metaphor for life. If you only think about the whole, you get paralyzed. Find the small. A little bit at a time. The next thing you know, the ball can be kicked instead of swallowing you whole.

So, brains. I’m working on mine. It helps. My son would say, there you go again, being the itinerant lecturer, offering up advice without ever having been asked for any. Michael would say I’m trying to be the cruise director. Whatever. Brains. Think about them. 

 

 

 

I never was very ambitious. When I was a kid, I wanted to be an artist for awhile. But I figured out that having no idea what to draw or paint when looking at a blank piece of paper was probably a critical drawback. I was pretty much interested in every subject that came my way, with math and physics being the only ones that didn’t light my furnace. I spent a lot of time reading books. I also liked talking about politics. I enjoyed riding in the car with my dad, listening to news radio and hearing what he had to say about Mayor Daley and local officials like Ben Adamowski.  I used to put people like that on my lists of friends and crushes, which usually changed on a daily basis.

I felt pretty weird, at least in comparison to lots of the kids around me. My family lived in a neighborhood which was populated by a diverse mix, but as a young teenager, I mostly noticed that we couldn’t afford the clothes and lifestyles of the “coolest kids.” No overnight camps, Gant shirts or Weejun shoes for me.  It was hard to be an outsider looking in on that world. How to fit became my most pressing question.

My family had moved from Sioux City, Iowa to Chicago when I was seven. I was put in first grade, though I’d already completed it, but I assume that small town school was considered less than adequate.  A few weeks into the school year, a teacher showed up and said I was done in my class and moved me to second grade. The year after that I did three semesters in two. Same thing happened in sixth and seventh grade. I felt so afraid. I didn’t know where I belonged. Each time I felt settled, I was in a new space.

My older brother and sister were having a hard time. I could tell they felt like imposters. Changing  cities and schools in adolescence is so challenging. I knew they were sad and uncomfortable. I was trying to figure out how to avoid that and just be ok. But what to do about the uncontrolled changes? Where did I really belong? How about the people I called the clothes police? The ones who said, “where are your dress shoes,” on picture day? I didn’t have dress shoes. So I said I forgot it was picture day. When I wore the puke green ribbon sweater with the maroon skirt and a girl said, “that doesn’t match,” I replied, “It does now.” Aha.  I’d found my angle. I would embrace the role of being different. And I’d make it charming, funny, entertaining. I’d squash the fear of being an outsider, push away that square peg in the round hole feeling. I wrestled internally. I was the wrong size, I had the wrong clothes, but I’d be the right friend and develop some strong  armor to get by. And it worked. I figured out how to maneuver my way through my teen years, planning strategies, cultivating friendships, even getting elected treasurer of student council. I was the puppet master instead of the misfit. Pretty repugnant but successful.

When I went to college, I was barely 17. I had no idea what I was doing or what I wanted to do, but I was sure of one thing. I wanted to shed the persona I’d developed to survive high school and be just me. Whoever that was. Just me. A genuine, authentic self. I kept a magic suit of mental armor to protect myself from unexpected assaults, but I turned inward, trying to figure out who I was. It’s a task that takes a long time. Trying to understand what you want rather than what others expect is a lengthy process. The layers of behavior and attitudes that take years to acquire have to be examined and dissected – a confusing process. Often a lonely one. Finding my voice was easy on the surface because I had a lot of language. Years of reading gave me access to a bottomless reservoir for creating one-liners and developing a stinging wit. But there was more to authenticity than word games. Everyone can remember the things they wished they’d been able to say during particularly tough moments. They usually came hours later, in the shower, where red-faced and fuming, all the should’ves arrive, like pieces of lost baggage at the airport. I peeled away at my insides, walking through an interior landscape with boulders and rocks that needed peeking under and shoving aside. Through my 20’s and 30’s, I clambered around in there, looking for my real voice, my real heart and perhaps most importantly, my real principles. And over time, I began to realize that what came out of my mouth was starting to be integrated with what was in me. I stopped feeling a disparity between my internal and external lives. I had become authentic, although I periodically wondered if I was really me and not a fraud. Those masks we wear are hard to discard.

Eventually I felt I had arrived. Living in a place where I was all me all the time. In a bad spot, I had access to my most real self. I became my trusted ally. Authenticity helps make you fearless. The certainty of self-knowledge is what we have left when our lives convulse. When the unexpected happens, when the people we love die, authenticity helps in going forward into the opaque that was once translucent. I’m not going to give up this hard fought self I’ve become in my life. I’m still flexible and can grow but I have a true center. No matter what happens, I’m truly mine. To this day I don’t know exactly what I want to be, but I like who I am. That’s something.

 

 

 

 

I started writing letters to Michael almost immediately after we became friends. Back in 1971, there wasn’t much happening in the way of technology. Besides, I really loved stringing words together, trying to find the perfect ones to express the relentless deluge of verbiage that constantly rushed through my head. While sorting through piles of paper recently, I found an essay I’d written in college for a lit class-the professor commented that I certainly had a wealth of words. Indeed. I talk as much as I write.

Michael and I became best friends when we met in 1971. Neither one of us understood why. One of those instantaneous connections that is inexplicable. For 6 months, we spent hours talking late into the night and I wrote letters as well. Torrents of words that I needed to get out of me and Michael received them all. Sometimes I wasn’t sure if he was really listening, but mostly it felt like he was and when I was finished, I felt peace. After those months of friendship, I left for Europe with two friends. Michael was looking after my dog and he brought her to my parents’ place for a quick last visit before I left for good. My friends and I were driving to New York to get our flight,  and during those hours in the car, I was mulling things over and realized that what I had with Michael was more than friendship. I was pretty sure I was in love and when we stopped for the night in Philly, I called to tell him the news, and he replied, “Far out!” And off I went on my adventure for almost 3 months.

While I was traveling, I practically choked on all the things I wanted to say. I wrote Michael almost every day, in addition to filling pages in my journals. I recorded everything that happened, inside and out. And in each major city, I ran to the American Express office hoping he’d write me back. And he did. On a lucky day, I’d have a fistful of letters from him and my family. Truly a lost art. You could feel the writer in the paper. You could smell them as you pressed these precious missives up against your nose. I even wrote to my dog and she wrote me. That’s what we did for each other.

When Michael died, I started sitting through all of his papers and mine as well. And I found that both of us had saved every letter, every greeting card, every scrap and note that we’d ever written each other. So overwhelming and wonderful. How I missed our exchanges which stretched out over 45 years. What could I possibly do with all the feelings bubbling up inside of me?

The solution was relatively simple. I just kept writing to him. Right now I can’t exactly say how many letters I’ve composed to him since his death. I’m piling them up in notebooks. I know I’ll never get an answer from him. But the purging of all my churning thoughts remains the relief it always was. Some day I might publish the collection. Today,  I decided to share a particularly prescient one that I wrote him on July 10, 1997. I still feel the same as I did when I wrote it.

Michael

In my head I see your profile Because I’m next to you, as usual. Thinking of what we’ve done. Births. Surgeries. Deaths. Lies. Fears. Insecurities. Joy. Companionship. Passion. Tenderness. Excitement. Longing. Everything.

With more to come. It sneaks up on you. Year after year. The great love of your life, your best friend. The blurry lines between you and me and me and you.

I made the right choices. I did the best for me.

Right now our children are coming home from a trip. Haven’t seen them in six days or so. Haven’t seen you in four hours. I miss you more.

Will you be coming to sit on my bed in the middle of the night if you should die before me? The way my mother says my father comes to hers?

Renee

Who knew, right? I’m glad I didn’t.

 

 

 

 

 

 

 

 

 

 

 

 

 

I don’t remember when structure started. I guess you’re born into it. By the time remembered cognition begins, there are people around you, and spaces which encompass you, and rules about everything. The structure seeps into you, osmotically, unconsciously and suddenly you have made contracts. Sleeping at night, eating at given times throughout the day, trying not to get in trouble with your parents, going to school. And over time, the structures define your life. Clocks and relationships and jobs. Time for exercise, time for fun, downtime, leisure time,  Appointments for life’s little chores. Deadlines. At least that’s the way it is for most of us who operate within the social construct. 

A normal part of the aging process is for structures to mutate, for priorities to shift in malleable hierarchies. There’s a big difference between a baby, a kid, an adult, a partner, an employee or employer, a senior citizen, a person alone. Usually. Things get really different when most of the structures disappear. The price exacted by being mortal and vulnerable, the price most of us don’t want to consider on a daily basis. If we’re lucky the pace of change is glacial. Small subtle alterations  are constantly coursing through us, inside and out. Too many to count and many below our level of awareness. In essence, this is the kindest, gentlest way to proceed on this brief journey through life.

The past 6 years haven’t been like that for me. I left my job of 33 years and became a caregiver for my grandson. The plan was to do it for the next one as well. But life happened.  My mother moved in with me.  Michael and I were stunned by his cancer diagnosis.  I suddenly had three people who really needed me. My knees went from creaky to bone on bone. I had to move my mother into an assisted living facility. She was mean and angry and treated me like a criminal.

Michael’s cancer advanced. He had 18 aggressive chemotherapy treatments and we ran off to what we thought would be our last trip. He stayed strong and on the eve of another journey to spend time with Henry alone in Panama, a guys’ trip, I fell into kidney stone pain. I sent him anyway. Got through that part while living with what felt like a golf ball rolling around in my left kidney. Then a close friend died with his wife abroad and I went through what felt like a dress rehearsal for Michael, at my friend’s deathbed with two of his children. My mother got the flu and developed dementia. Into the nursing home she went.  The new baby arrived – Michael was so thrilled to meet him. Tristan Michael.

The cancer came back again. We had second, third and fourth opinions. We scrambled to get into a clinical trial and were turned away with the comment, go home and get sicker. Unfortunately Michael obliged. In 2015, the third in our struggle, my brother died in April and Michael hovered at the edge of death until he miraculously received Keytruda off-trial in June. Then my mother died in July, followed that same week by our dog, aged 14 and a half. My older sister and I, who were always a seeming accident of blood, cut ties permanently.  And lastly, the family of the old friend who died, fell away, our friendship doomed by an accident in time which left me in their private  space. Such a year.

In 2016, there were months of anxious peace and joy, each ordinary day exquisite in its normalcy. But always there was the underlying threat of disease and as the end of the year approached, it was clear to me that Michael was changing before my eyes. Last  year, we journeyed through our final time together, ending first with his death, and then the loss of a second dog a scant two weeks later. Five deaths in two years and two significant living losses. 

A short time after Michael died, I realized that all the structures in my life were gone. I am unemployed. My parents are dead. My husband is dead.  My children are grown. I have no schedule. That was lost while caring for Michael. I have nowhere to be. An amorphous life. The structures of my days have vanished. I am like an amoeba, somewhat shapeless, floating around in the soup. Such a strange feeling. Separated from any framework other than what I create. 

I’m trying to build structures to occupy. But I’m not sure what I want them to feel like. I bob like a cork in the water, somewhat buoyed by what was,  and yet knowing that going forward is what is required. My new grand experiment. Will I rejoin the social construct or live in the periphery in this amorphous state? I guess we’ll see. 

 

 

 

 

 

Most of my life, I’ve lived by a conscious decision to be unaffected by weather. I never saw much point in allowing my mood to be altered by something so completely out of my control. And I’ve been lucky enough to adhere to this idea, day in, day out. Until this week.

Tuesday was the first day of the second session of the grief support group I fought to get started at our local cancer center. Not having a group there was such an egregious oversight to me. I needed help which wasn’t there.  I’m determined to keep it going so no one else has to feel that no place exists to share the grief that accompanies death, especially with others experiencing the same feelings.

But this group was very different from the first one. Everyone in the first one was a widow.  I felt a kinship with those people and our exchange was open and freewheeling despite the best efforts of the social worker to have us follow a syllabus of a sort – the ones that lay out the stages of grief in order, as if we all will follow the same path like good little grievers.

This time, everyone in the group had lost a child. One was a 24 year old son who’d died of a rare kidney cancer. He’s been gone 2 years, but his mom is stuck in grief as fresh as the day he died in her arms. Then there was the couple whose son was working hard on his organic farm when a tree suddenly toppled over and crushed him to death.

I instantly felt like an imposter. After we became parents Michael and I had countless conversations about the fear of losing a child. And that was a constant, that neither one of us thought anything could fell us except that.  And here I was with these people who looked ghostly and nakedly bereft. The new facilitator had her grief sheet with her and turned to the father of the son who died in the freak accident and asked him how he would describe loss. The man stared at her and said, “I have no idea what you’re talking about.” She could have been speaking in tongues for all he knew or cared.

I tried hard that day. I summoned all my internal resources to try to provide something meaningful to these people. I moved chairs to sit next to one woman and asked if I could just touch her hand as she vented. I felt so weighed down by their pain. I can’t deny my own, but still. I felt selfish and small even though I understand that I’m entitled to my pain.

When I left the group that day, I noticed the grey sky. It’s been grey and wet, icy and snowy, frigidly cold. So many people are sick with colds and flu and I, with my still dreadful sleeping habits, am digging deep and hoping my immune system will help me fend all that off, while I babysit for my sniffling, feverish grandchildren and watch my kids plow through their fatigue and aches. And then I realized I hated the grey weather. It feels like an iron yoke on my back and I want to push it away and feel sun and put my toes in the ocean where life will churn around my ankles. So strange to feel that sensation.

I have no idea how to adjust to this new feeling. Oddly, it makes me miss Michael more. He was the one who constantly moaned about winter and grey and cold, lying under piles of comforters and afghans on his side of the bed, while I never needed anything extra for warmth. While I couldn’t care less about what was going on outside aside from practical issues. I was always very busy and occupied inside. And despite this new external load, this awareness of the oppressive weather and atmosphere, I am internally occupied. I am quietly tracing the curve of his chin, the length of his fingers, the breadth of his shoulders inside myself, in this grey cloak. I’m doing my grief in the nether regions now, amidst the grey, foggy places that never meant much to me before. My new angle on the world.