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.
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?
Who knew, right? I’m glad I didn’t.
My mom and I had a long turbulent life together. Not much different than many people’s lives. I knew she really loved me. She was affectionate and funny and on my side. She was more like a friend than a mom. For a long time, I didn’t know that wasn’t a good thing. I don’t think there was a boundary in our relationship. In my teens, I took on whatever she tossed into my lap, inappropriate confessions, dark secrets and her never-ending physical problems.
I started recognizing that I was more like her mom than she was mine in my late 20’s. My frustrations grew, burgeoning through the years and finally, becoming intolerable when my dad died at 67 in 1989. I still remember what happened when my dad decided to quit his chemo after only one round. His scans were all stable, but he was a finicky guy and some of the incumbent side effects of treatment were just more than he could manage. We were outside the hospital and he sent my mom on some fake errand so he could tell me that he wasn’t going to continue the struggle, and then told me to make his funeral arrangements and to get the best deal. Damn funeral industry.
I did it. Never batted an eye. I’d just turned 38. I was married with a full-time job, two little kids and a husband with a herniated disk. But I took the lateral pass from him and became the power figure in my mom’s life, the third in line behind her mother and him. My mom never learned to drive. I called my new life Driving Miss Dorothy. Over the years we had many clashes as I alternated between my responsibility to take care of her and my deep desire to feel parented. For 25 years we wrangled with this confusing mess, a tangled knot of love, resentment, grudges and betrayals, real and imagined. Looking back, I don’t know how either of us survived.
But then, the love always hung around. Mom always told my sister Cheryl and me that she’d never really leave us. That even after she died, she’d be hovering around, watching over us all the time. An idea truly in keeping with the little girl she was at heart, a street-smart, tough little kid who survived so much against tall odds. Despite her challenges, she made it into her early 90’s.
During those 25 years, my mom lived on her own until her late 80’s. Then she started having scary little accidents, like forgetting to turn off a stove burner and taking the wrong insulin at the wrong time. The whole family who lived here in town held a group meeting during which we decided that she needed to move into my house. I had the most space and was getting ready to retire. And although we had friction, no one wanted to see her in a nursing home. She needed to help us out financially to build handicap-accessible bathrooms for her, but eventually we did it all and in she came. Downsizing her from a two bedroom duplex was difficult but we managed to surround her with her most precious possessions so she was comfortable. Sadly, we continued to clash and then Michael was diagnosed with his wretched cancer. Plans were made to move her into an attractive assisted living facility where she remained for two years.
Then in December 2014, mom got the flu. And for whatever reason, the little hints of dementia that had been coming and going for a few years locked in place during her hospital stay, making it clear that she didn’t have the executive skills to live in assisted living any more. The time for the dreaded nursing home arrived. It was the third, and ultimately the last move for her. The assisted living facility gave only a small window of time for us to remove all her things. This move was different. She’d have a roommate. Her beloved mahogany bedroom furniture would have to go, the bed where all her babies were conceived and where she wished to die. Thankfully, she didn’t feel that loss.
This last move was the ultimate invasion of her private space. If there was ever any question of who the power figure was, who the mother figure was, that was asked and answered. Michael’s cancer was surging. I had very little time to devote to clearing away mom’s things. Stuff was stuff. I made a valiant attempt to redistribute treasures given to her by other family members so no one would feel slighted. There was no way we could all be together to sort things out. I was like one of those authors who tell you to hold an object in your hands and if you feel nothing, get rid of it. I felt virtually nothing but desperation. Until I found the one thing that could stop me from my rapid and ghastly task discarding of a lifetime in just a few hours.
There were two mahogany bureaus which held clothing in her bedroom. They were transported from her apartment to my house to the assisted living center without ever having been opened by anyone but her. They needed to be emptied. Mostly there were just clothes. But then there was one of those drawers, the kind usually found in a kitchen or a desk, with piles of small random items in no particular order. THAT drawer. I started working my way through the piles, Handkerchiefs, nail clippers, safety pins, ribbons. Empty sachet packets, tiny address books, a random footie. But then there was an envelope labeled Gertrude’s hair. Gertrude was my mother’s young sister. She had two, Norma and Gertrude. They both died. Norma was about 6 months old and may have been a SIDS baby. My mom told me she was taken out of the house in a suitcase when she died. An unforgettable childhood trauma. Gertrude or Gittel had rheumatic fever and developed a hole in her heart. The type of thing that would almost never happen today. My mother adored her. she waited on her and combed her hair, brought her a cooked chicken leg, and spent lots of time with her. But eventually she weakened and died. One of mom’s most vivid memories was kissing her cold cheek. She talked about it her whole life. When I saw that envelope, I couldn’t believe it. My hands shook as I ripped it open. Nothing, not even a strand inside. I moved on. Suddenly there was a baggie, bulky. Inside I saw another handkerchief, wrapped around something else. Like Russian matyroshka dolls. Another envelope labeled Gertrude’s hair. And there it was. A long shiny braid, with curls at the end, a rich auburn-brown. The color reminded me of my daughter’s hair.
I stood and held it for a long time. I realized that for 78 years, my mom had carried this braid with her from state to state, city to city, house to apartment, apartment to apartment. I was profoundly moved. I knew about the love, I knew about how much my mom wished she had a sister. But I never knew about this most intimate talisman that she held close from childhood. Her own mother, a truly difficult woman, must have gone mad when her daughters died. And although my mom had terrible hostility toward her mother, a part of her must have always understood that these losses broke her. Mom always said the one thing she could never stand was for one of her children to die before her.
I display that hair, that love, that history in a labeled shadowbox in my home. As my mom slipped further into dementia in 2015, my brother died in April. I used all my power as her executor, to convince the family not to tell her. I couldn’t see any reason to thrust that pain on her. As Michael got sicker, she said, maybe if Michael dies, you and I should try living together. I gently reminded her that we’d tried that already and she asked if I kicked her out because I couldn’t stand her. We both laughed.
She died in July after suffering a broken hip. She’d become very sweet in her final months and I was glad to be at peace with her as Cheryl and I sat with her during her final hours. She was always afraid she might die alone, as her mother did. That didn’t happen. She never asked about any of her things, her furniture, her mementoes. She was in a very small place. When I closed her eyes for the last time, we took care of the necessary business, and I left the nursing home. Mom floated right out the door with me and I feel her in my house all the time. When you open the door to her bedroom, somehow the scent of her still wafts out through the walls, despite her being gone from that space for over four years. And her little sister is here, too. Although I don’t understand any of it. Which is ok.
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.