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. 

The Crush

EBFE9E25-64F8-4CC3-8140-2F4CCB1FB610This 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 closer 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 north on Chappel. We were on 81st Street-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.

7E47F54D-CAFD-4B41-9E8D-945A2F521F7CA lot happened while I lived at 2019 East 81st Street. I was eating lunch at home by myself when Kennedy was killed. I walked down to Judy’s 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 become a family of 4 in less cramped quarters.

I was growing up. 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. So 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.

 

 

For the most part, high school was fraught with the common experiences most teenagers walk through as they grow. I liked lots of my classes and teachers, but felt insecure and stupid in others. The external world was tumultuous and bled into daily life. I was keenly aware of civil rights issues, Vietnam, music and  marijuana, or herb as one friend called it. Sex, too. No one told me much about it, but my body was awake. Although I had a pretty liberal social conscience, I was personally very conservative. No teenaged pregnancies for me. Some of the boys teasingly called me polar bear because I was so cold. On the other hand, my friend Marc with whom I had spirited conversations about the state of the world, said he liked me so much that he’d give me a hundred yard head start before he shot me during the impending race war. Looking back, I’m glad I grew up where I did, in a multi-racial neighborhood which was a microcosm for the issues of the day. Who I am now is a direct result of that time and interchange. Breadth of knowledge and depth of understanding are legacies from that place.

In the meantime, I was trying to do the social thing. 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 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 and we laughingly pretended we were like TV 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.

EA588F6A-DC39-4C4A-8374-CE1B0B1FF73BThat 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. EE557BE5-46D6-401F-A318-36EC9BADCB35

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 and confessing 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.

0451ccaa-8d8a-464c-b683-3c37cf747a42.jpegWe 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.

This is a before story, before my life with Michael which began at age 20 and is still going on, despite his death last May. Going back into these old memories is a welcome respite from the grief process. Innocence and simplicity. Treasures. 

 

An Accidental Memory Palace

42EEA069-C9DB-43A5-9E0E-F4EFCA78B37BThese 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.

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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.

(C) 2003 Gateway,Inc. 

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. 

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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.

 

This Old Home

33867462-1CC2-4C78-BC57-51C4F18299AAThis is a photo of my house which was taken in 1916. The people standing in front of it were the original owners who built it in 1893. The wraparound veranda is gone except for one small portion over the entry steps-the numbers above it are still here and made of wood. Along with everything else about this place, I love them.

I acquired the picture one day when a man who was about my age now, knocked on the door and told me that his father, who’d lived here as a boy, was near death and felt the photo should stay with the house. What a generous act on the part of a stranger. It’s been hanging in the living room ever since that day.

When Michael and I started looking for a place to buy in 1978, the market was tight and interest rates were high. What became our house had been used as three apartments since the 1930’s. When the depression hit hard, no one could afford to take care of such a large place. The current owner was involved in settling an estate with the heirs of his business partner who’d recently died. He needed to sell three of their jointly owned houses to pay off the heirs’ shares. When Michael and I went to see the house, the renters of the first floor weren’t home. We climbed to the second floor and walked through the two units upstairs. I still can’t pinpoint the reason I knew we had to have it. There was nothing particularly attractive about the rooms or the shared bath-rather it looked like a lot of work with faded wallpaper and dingy floors. But I wanted it desperately and Michael, always indulgent,  went along with the utterly irrational idea of making a bid without ever having seen the first floor. Inspections? Bah!

The man who owned the place was a dapper, diminutive European man who wore seersucker suits with a handkerchief in the front pocket and beautiful two-toned shoes. He was reluctant to let the house go as he’d hoped to demolish it one day and build an apartment building on its large double lot. Though not a coffee drinker, I must’ve met him every day for a month, to listen to his life stories and frustrations, using all my persuasive powers to melt his opposition and sell it to us. And eventually he did, on a balloon contract at an exorbitant interest rate. He was quite annoyed when I filed the contract with the County Clerk-he scolded me for not accepting his handshake as his bond. And suddenly we were homeowners. When the tenants’ lease on the first floor expired, we finally got to see the first floor which was our apartment for the first three years we lived here.

We scraped wallpaper, painted, stripped, sanded and varnished floors. We were thrilled. The walls seemed to exude warmth and good feelings. We spent long hours talking about what might’ve happened within these rooms, trying to understand what made the atmosphere so homey. 

 

Three years after moving in, we got pregnant and took over one of the upstairs apartments to make room for the baby. We rented the remaining unit to friends – when baby number two came along, we took over the entire place.

We spent a lot of time learning the history of the house. I have the original title which dates the land back into the 1700’s. The title includes the original owners’ wills which surprisingly,  show that their personal possessions were auctioned off to their children. We met the man who added indoor plumbing and two bathrooms in 1918. He said they cost a full year’s wages. We knew his children, two of whom were local lawyers and one who was an Olympian. When their family sold the house, the local candy shop owner was the next purchaser. We found the names of renters, too. All neatly compiled in directories in our local library. Microfiche revealed  newspaper stories about who fell down the cellar stairs and how all the residents died. We found out that the original name of our street was Market-the residents petitioned the city council to change it to Broadway because they didn’t like the implications that “market” brought to mind. One day, a man who came to our garage sale told me he’d attended a beautiful wedding in our parlor.830EC811-454F-481D-B807-6A9B4990EBCC

And so our relationship with our home became more fulsome and complex. We were sharing space with everyone who came before us and began to compound that history with our own contributions. Our children grew up here and after leaving, came back to the place where so many of their life events happened. Learning to walk, playing in the yard, nuzzling pets and sleepovers were regular events. So were fighting and laughing and crying. The ball banged off the basketball hoop in the driveway. A hammock was strung between the apple and pear trees. Michael built a tall multi-level climbing structure in the backyard.

Listening to music and watching movies and taking furtive steps into the adult world everyone is so anxious to join happened under this roof. Our kids’ friends called our home a refuge space where comfort, treats, a sympathetic ear and big hugs could be found. A house of acceptance and no judgment. The people who came wore many colors and no one thought about it. Michael, whose childhood home was a cold and empty place, reveled in the warmth which I know has seeped into the walls and floors. We enriched the surrounding ground with trees, shrubs, flowers, vegetables and herbs. An ecosystem happened outside that meshed with the inside. A home with many flaws, not for everyone, but perfect for us. Every time I drive down my street and see it waiting for me, I’m always happy to go inside.

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The stairs are harder for me now. The house is too big and too much to maintain on my own. Suddenly I have hired helpers. I’m toying with ideas about how to manage as I age along with this stoic refuge that’s weathered so many years. Such a sturdy, reliable place. I hope to stay here until the end of my life, in the space where the walls continue to send out the vibe that drew us here. Where in certain lights at different times of day, the ones that I love still appear in the shadows and years of memories play in images on these wondrous old walls. 

 

 

Dor and Hal

A31DC57A-8992-4F72-ABED-CC72BB49876DOn January 23, 1943, my parents were married. Today would’ve been their 75th anniversary. My mother was nineteen and my dad was either nineteen or twenty, depending on which document is correct. A pair of babies. Neither one of them had a great childhood. My mom was the only surviving female amongst her siblings and as such, was treated in the classic second class style for girls by her immigrant parents. Not much was expected from her in terms of life accomplishments.  In addition to going to school, she was responsible for a slew of household chores which included daily floor scrubbing, errand running and bearing the brunt of my grandmother’s rage at her life. The middle child in a group of boys, she felt incredibly uncomfortable as a sexual object amidst her brothers and step-brother. She got little support from my grandmother who lived the barefoot, pregnant life of a superstitious first-generation immigrant, smart but illiterate,  frustrated and devastated by the deaths of three children. She asserted what power she had  over her primary target in the household, her sole surviving daughter. My mother told me my grandmother never told her she loved her in her entire life.

My dad was another first generation American child whose very early years started out promising but quickly devolved into depression life. His father, who worked as a commercial photographer toying with ideas of double exposure,  died at 39, when my dad was eight years old. He had an older sister and younger brother. In keeping with the idea that boys would be the family standard bearers, he took on the responsibility of trying to take care of his mother and siblings. His first job was pulling a wagon through the streets of Chicago, selling apples. As finances became more dire, he quit high school after his sophomore year so he could work full time. My parents both had powerful native intelligence, but neither had a shred of guidance or attention paid to their potential. They were street kids who learned how to bluff and act tough. My mom’s toughness ran deeper than my dad’s. Inside they were still little children, perennially stuck in those spots because their grownups were overwhelmed by life and never understood parenting, beyond making sure there was food and a roof. Neither one of them saw a toothbrush until they were old enough to understand that people actually took care of their teeth.

They were introduced by my mom’s older brother and it was one of those things. They were married in less than a year. My mom wore an ice blue dress with a little jacket and open toed shoes though her feet froze and were soaked that night. My dad had a suit that he got from somewhere. They received $80 and spent two nights in a hotel. My dad was my mom’s first and only lover. I don’t know about him. He was way too shy to talk about those things with me. After the honeymoon they moved into my mom’s parents’ house and went to work. My mom’s job was short lived as my brother was born in November of that year. They stayed with my grandparents for over eight years, finally moving to Iowa when I was a baby. My older siblings were eight and five. My dad was hoping for a new beginning working with his brother-in-law, his sister’s husband, selling farm implements and water conditioners. He was on the road a lot, while mom stayed home and tried to manage the children and the bill collectors.  That part of their life helped them feel independent, on their own at last. But ultimately, my mom, subservient to my dad’s older sister, found life was even less attractive there than living with her parents. We all trundled back to Chicago when I was seven, moving into an apartment on Cornell Avenue on the south side of the city, right around the corner from my grandparents who lived on 78th Street. 1F20B17A-E979-4100-985F-8ACAFDF732DD

Life was always financially bumpy and my mom was sick all the time. I spent a lot of time visiting her in hospitals, thankful I looked mature enough to pass the age requirement for getting into her room.  My dad held several different jobs before finally getting his toe in the door at the First National Bank of Chicago in his mid-forties. He finally found his niche and advanced professionally, despite no education or credentials.

All those years were tumultuous. My younger sister who’d come almost two and a half years after me, made four siblings who were crunched into a two bedroom apartment with our parents. As I watched from the advantageous third position, I realized that though my parents were truly loving to each other and all of their kids, there wasn’t the expected boundary of adult and child between us. In retrospect, it felt like a mostly benign but often wacky frat house with no one in charge to really steer the ship. My parents were scared of a lot, and trained us to be as afraid as they were of so many life experiences. My older sister ultimately referred to their behavior as life on the couch.,They clung to each other amidst the uproar and the scary and I realized that the best role for me was to be ok and figure out life for myself. The first time I jumped off a diving board they were positive I’d be an Olympian. Finding realism kind of started there. Through it all, their love was palpable and despite their childish behavior, I worshipped them and modeled my future desires on having big love like them. I just wanted to make sure I got to be an adult first and to make sure I married another one.

65328148-B2D8-4E24-A5CD-AC74DF70BDF7Luckily, I got that part right. When my dad died at only 67, my mom soldiered on and made it to almost 92. She never entertained remarrying and was wistful about his absence for the rest of her life. My own path seems a repeat of hers, with Michael having died at exactly the same age as my dad. That part of the story is unfinished. Although, in my heart, I suspect that once you get the big love, there doesn’t seem much point in settling for anything less. Happy anniversary, mom and dad. I hope the two of you are out there somewhere, connected forever and that, mom, you’ll see that dad was never serious about Ava Gardner. I miss you two crazies.