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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

 

What This is Really About

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

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

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

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

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

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

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

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

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

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

 

My Little Existential Soulmate

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

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

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

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

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

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

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

Accidents, Shame and Lies

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

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

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

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

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

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

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

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

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

Crash-PTSD, Caregiving and Grief

D0E58473-66D8-4079-A188-F49C499850BBAlmost 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.B9555AF9-7057-4216-9DCD-4A6CA458EFF4I 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. E4AA6C8B-7B05-432C-ADBF-08D6658159F0So 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. 85DF1137-75E4-4C0C-A947-EAAB28FB1B4FBeing 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. 46481818-2AB8-44CD-96E2-83602B335A0E

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?270242BD-CD35-460C-ADF8-26FE2DA7A1120AB52D85-FC8A-4A19-8D8E-C6816EBF6B035B033881-D00E-4B52-AFA9-DD8C8AEFBAA1

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.6430417E-3DB3-4F57-AC35-083B819FCB9A

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.

https://opinionator.blogs.nytimes.com/2015/01/10/getting-grief-right/

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. 9CAEC0B3-AD74-40F2-97AE-8BDA884D7FBA

 

 

Take a Hike

FB46B0E5-655D-46B2-8C30-B9709C916809Recently, 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. 

 

 

Books, Downsizing and Life

1686B27E-C5F0-47B1-89DD-FE281DA9E965This 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.

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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 years7C113D4A-3738-487E-9A5B-E256912BF65DEventually 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.

B6CCAABC-913A-475A-ABDA-2A0B1A80309E 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.