Stunned : The Sneak Attack

F7A6DA44-FC95-44D2-B2D9-4548BD64EBC8So you’re going along, leading your new life, adapting to the fact that your partner of 45 years died and has been gone for over a year. And you’re really working your tail off at building positive experiences and living the way you want and facing reality like a totally evolved adult. And then, wham! Without even the tiniest hint, you are instantly stunned, bowled over by the fact that your person is never coming back, that you will never lay eyes or hands or anything else on your lover, your best friend. Now how the hell does that happen?02CEF7AF-D36C-467A-BC3D-CA77AE540A77

I get it when you suddenly hear a song that was meaningful in your relationship or you’re looking at photos that bring back memories. Then the progression of remembering turns to wondering why and what if, and there’s some kind of logic there. Something you can understand. But this minding your own business, thinking about what you have to do today thing, when there’s no direct stimulus that would reasonably help explain the sudden shock and desolation is pretty unnerving. And unfair, I might add. Ambushed. What a dreadful feeling.

I’m always trying to face things head on-that’s my style. The first thing that popped into my head when this most recent hammer dropped? A few quotes from one of my favorite books. When I read it years ago, I had no idea how apt these two passages would be for me at this stage of my life. 79CF08FC-802F-4930-96E6-D07511B17509

“..The girl raised her eyes to see who was passing by the window, and that casual glance was the beginning of a cataclysm of love that still had not ended half a century later.”

“She was a ghost in a strange house that overnight had become immense and solitary and through which she wandered without purpose, asking herself in anguish which one of them was deader: the man who had died or the woman he had left behind.”

Although the words move me and reflect me, for now, they won’t do for providing solace and a path forward. Instead, I find myself pursuing a different direction. I’m thinking about the phrase “taking the waters,” and how that applies to me at this point in time.AEE72E81-3510-4819-9F9F-2834E6C7D078

Taking the waters is an ancient concept, positing that immersing oneself in mineral springs, pools and the like would provide healing and rejuvenation. The practice and reference can be found in literature from multiple cultures and eras. For me, water has been a go-to place since I was a child. And now, I’m looking back to where that attraction began and contemplating that comforting reliable space. 

28B5CAFE-276C-48CF-851D-87BC81BD9CCBI discovered swimming when my parents moved back to Chicago from Sioux City when I was seven. Lake Michigan was inexpensive entertainment. Our spot was Rainbow Beach which was relatively close to our apartment. We carted lawn chairs and blankets to the grassy area west of the beach. No one in my family was much interested in the water but me. My mom wore a bathing suit but my dad sat on a chair wearing long pants and sometimes, even a lightweight sport coat. They’d both grown up in the city on the edge of this gorgeous lake but were too busy scrabbling to live to spend any time near the water. Back in those more innocent days, a kid could go alone from the park down to the water and that’s what I did. I stood watching the swimmers carefully and copied their movements as best I could. What a glorious feeling. The lake was really cold but I didn’t care. I’d stay in the water until I pruned and my lips turned blue, excited when my uncertain movements took me from one spot to another. I was hooked immediately. I didn’t care about the stinky, rotting alewives that lay along the shore. Whatever happened to them wasn’t going to happen to me. Most of my early water time happened in that lake. Occasionally, my parents took us on an excursion to a city pool. I remember going off the high dive at the Wicker Park pool, an almost unimaginable feat when I, whose fear of heights is now legendary, would do almost anything to enter the water.

In high school, swimming was a component of PE class. I remember we wore swimsuits made of a material that felt  rough, that the suits were baggy,  and that you got either a red or blue one, depending on your skill level. I didn’t love our pool or the class. What I did love at that time was summer, when a nearby motel allowed people to pay a dollar a day to spend unlimited hours at their outdoor pool. Before I had a summer job, I split my time between The Thunderbird Motel and Rainbow Beach. My skin was bronzed and my hair turned auburn.B3997346-691F-4378-A3A7-B3400CB44F47In those formative years, I just loved what I loved. As I evolved from child to young adult, I started a deeper thought process,  probing inside myself, trying to understand what I felt and what I wanted. I was seventeen when I went to college. I had no inkling then that I would spend the rest of my life in this university town, a place plopped in the middle of corn and soybean fields where the only body of water was a skimpy little creek filled with widely varying and questionable items. I’d left my lake behind. But in time, I found the pools, first the ones on campus and then, the city pool, the one destined to become the pool of my life. The water continued to be a source of peace and lightness for me. As I swam along, slowly and steadily in my classic tortoise style, my hurt, my rage, my confusion and even my positive feelings went quiet. I can scarcely describe how unusual the internal drifting stillness felt, so in contrast to the relentless focus which is my dominant mental state. I began to learn that my water time was my meditation time, a state of mind that was more organic to me than I imagined.

But I am getting ahead of myself. At twenty, I met my husband, a water person like me. We roamed together, looking for swimming spots. We skinny dipped in gravel pits and farm retaining ponds. We found lakes a few hours from home and emerged from them with green slime caught in our toes. As we moved further into our life, our travels expanded and there were hotel pools, more lakes and finally oceans.

We glided in the waves of the Atlantic and Pacific. We spent countless hours in the Gulf of Mexico and swam with the wondrous creatures of the turquoise Caribbean. We carried our lovemaking into these waters, surreptitiously joining with each other under the surface. We managed a few pools as well. These were rapturous moments that sway in my memory. Unforgettable.

When we joined old friends and their families in a communal camp setting for several years, I swam the lake while Michael helped the kids with the water sports. I don’t believe I ever rode the jet skis we rented. Occasionally, I rode in the boat to spot the people who were water skiing or tubing. I canoed once.  And I sat or stood on the dock to help the little ones learn to fish or skip stones. But for me those sweet summer vacations were about the swimming, usually by myself.

For many years when winter break began, we took our kids to Starved Rock State Park, a place for hiking and watching bald eagles, if you were lucky. For me the lodge there had the critical main attraction, a large indoor pool, a hot tub and a sauna, completely glassed in so that while you swam, you could see nature scant yards away. One amazing December day, we arrived with a blizzard minutes behind us and as I swam lap after lap, I watched the snow fall steadily, piling up in great white heaps while the warmth of the water embraced me. These were trips we shared with our children, telling stories, breaking news, relaxing and tightening the bonds of our little family unit. As they grew older, sometimes we went alone. But we also expanded our crew to include girlfriends, and eventually our son-in-law and grandchildren. We went there in the midst of Michael’s chemotherapy. And it was the last healthy trip he had the month before his cancer ran amok. I’m not sure I’ll ever be able to go back there. I think I prefer to have the memories from those times remain encapsulated. I often wondered why I was the only person in the pool in the morning, up and back, up and back, not understanding why people hadn’t figured out this lovely feeling they could have so easily. I was lucky. That book is closed.

But the pool of my life is none of what I’ve described. Our local pool was called Crystal Lake. In my mid-twenties having a car and a job allowed for mobility. Crystal Lake was a lovely city park with mature trees, playgrounds, the lake, bridges and pavilions. The pool was further north and built in a depression in the land. Surrounded by trees and prairie plants, with street sounds muffled by the landscape, it was easy to feel that you were far from an urban area. No hustle bustle here. The pool was an oasis. I started attending with a couple of women friends who worked with me. I swam the most, my friends doing a few laps  while I stayed in the water. Eventually, Michael joined us there periodically. He was a beautiful swimmer but lazy – he’d do a few lengths and then snooze on a lounge chair. When he got too warm, he’d rejoin me. What a treat to hold each other in the midst of a work day. The good life. Every summer I looked forward to the Memorial Day opening. Over time, my companions came and went. I kept going, every day unless the skies opened and lightning interfered. I swam through my first pregnancy in that pool. I was so enormous that the lifeguards were terrified I’d go into labor on their watch. They had a baby betting thing going, trying to score cash off my giant belly. That didn’t happen. But my babies did arrive eventually and they learned to swim at Crystal Lake Pool. When they went to day camp, they swam there a few times a week. Some of my friends moved away and new ones joined me. Michael, too, along with my sister and my mother, who sat on the side, dangling her feet in the cool water. We had family picnics there after work on hot evenings. I can see us sitting under one of the umbrella tables, plum juice dripping down the kids’ chins, going from the baby pool to the big pool, my shoulders sore from catching my little jumpers who were never bored after doing the same activity a hundred times. I remember when I made my daughter take a stroke clinic which she hated but did anyway, developing into a talented swimmer. Watching her go back and forth was almost as much fun as doing it myself. Eventually  I joined the park district citizens’ advisory board so I could stick my two cents into any conversations about aquatics. Our parks director was more about parks than water. I wanted to advocate for investing in a community pool. Finally, the time came when the pool malfunctioned and it was time to tear it out, to start over with a new type of aquatic center which was more modern, with the bells and whistles that would attract more patrons and perhaps, break even financially. I was shell shocked even though I knew it was coming. Thirty years of life had gone by and that pool was part of my peace and joy. I mourned.

In time, I realized that fitness was a year round necessity and finally joined the indoor aquatic center so I could swim year-round. I acclimated because that’s what you do in order to survive and in time, was grateful to have a facility that I could use regularly. But my heart yearned for that feeling of swimming outside and escaping all the noise, both internal and external.

When the new outdoor aquatic center finally opened after almost 3 years, I went to check it out. I felt overwhelmed and alienated by all the noisy buckets, bells and slides meant to attract families and be more current than the old fashioned pool design I’d known for so long. I decided that the indoor pool would do and that except for spending time at the new Crystal Lake with my grandchildren, I’d keep my distance from this zooey place. But circumstances change. When Michael’s cancer came roaring to life last year, I stopped swimming in January and stayed by his side until his death in late May. He needed me and I needed to know that I’d done every last thing I could for him. I also wanted every single second that was left to us. When he died, I was whatever is beyond fatigue and exhaustion. After a few weeks. I realized that I needed to start moving before my body turned to total mush. I hadn’t realized how much muscle tone I lost during those months. Although I was always moving around and sleeping so little, the lack of regular exercise had caused all round atrophy. My doctor said that for every week of exercise that I’d missed, I’d need three weeks to begin to recover my strength. Suddenly I was looking at a year of weakness, something I’d never considered. Adding to the dilemma was my overwhelming sadness and grief.

If I went to the indoor pool, all the people that knew about my life would be waiting with sympathy. I knew that instead of working out, I’d be spending my time trying not to cry most of the time. I decided to go back to the outdoor pool, hoping to swim in privacy, not having to talk with anyone. The first couple of times I arrived for lap swim were disastrous. Friends I hadn’t seen in a long while were there and they all knew about Michael. Everything I tried to avoid was happening anyway. In addition, I couldn’t believe how weak I felt-every stroke was an enormous effort. I finally decided that the safest thing to do was to swim in the middle of the afternoon, when the pool was filled with screaming kids and I could disappear into the chaos while seeing virtually no one I knew. I thought it was a bit humorous that for so many people who had children and grandkids, that being around them during pool hours was like doing hard time. After a few weeks, I did bump into some friends, but not often. More importantly, I grew stronger, physically, mentally and emotionally. By the time Labor Day weekend rolled around, traditionally the last days of the outdoor season, I felt strong enough to go back indoors and pick up where I’d left off before Michael got so sick. And that’s exactly what I did. Over the fall and winter months, I reinstated my routine and faithfully moved on with my recovery.

But as spring approached and summer loomed, I found myself thinking more and more about wanting to swim outdoors. Taking the waters came into my head. I remembered how great it was to backstroke, looking up at the sky and the clouds. Watching hawks, turkey vultures and herons sail overhead as they moved toward the lake and scanned the ground for food. Dragonflies hovered constantly and bees droned along, attracted by the beautiful flowers and landscaping designs that surround the deck area. My pool pass needed renewing and I opted for the outdoor pass in addition to the indoor one. I’ve been going for a few weeks now. And indeed, I’m taking the rejuvenating, healing waters. As I glide up and back, I’ve been astonished to find powerful visual memories emerging, unelicited, from deep down in my body. I see my children, my daughter in a one piece suit with a single ruffle, diving off the side into her dad’s arms. I see my son, toddling gingerly through the kiddie pool, his arms uplifted, making sure someone was always nearby to grab his hand. I see my friends, laughing, joking and gossiping as they lay on the chaises, lazily watching me move along. I am powerwalking with my adult daughter in the shallow end, my sister nearby. I am telling a work acquaintance to stop talking to me about business when I’m in my vacation mode.

And I see Michael everywhere. I can see him diving. Swimming a whole length underwater and popping up right next to me. I can see the way his hair parts after swimming the crawl. Him smiling at me as he watches me swim length after length. I can feel how he pulled me toward him and walked around the water with me, clasped together in one of our happiest places. And I can see how much he loved being able to be there with our kids and the little boys, an experience he feared he’d never have. I don’t feel sad. I feel embraced. Every vision has a light quality to it, a shimmery glow that makes me smile, that brings comfort. My whole life happened at this place. My youth,  my life partnership, my friends, my babies, my family. It looks different but it’s in the same physical place and how I feel while immersed is the same drifting meditative sensation that I’ve had while swimming, always. The sneak attacks will come again. There can be no doubt of those ambushes as my love for Michael remains so alive. But I’m going to take the waters, whenever I can. To carry me through until the next time.C1AE13CC-EC17-4AA4-A294-EF805853D238A62360BA-E69F-44A6-82DD-65184A5C82D14A9A9C22-2B80-4943-B05B-977FAE59ECBE

 

 

 

 

Cancer’s Final Invoice -Redux.

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Merkel Cell Carcinoma slide

FD7E82AB-78D1-48DC-BB04-EE9D6BA96E9BYears ago I had a friend who was describing some symptoms that her mother had been experiencing for several weeks. I listened carefully, recognizing that they sounded very similar to those my dad had before being diagnosed with bladder cancer. When she finished talking, I gently and carefully suggested to her that what I heard was sounding a lot like cancer. She looked at me rather nonchalantly and said, “we don’t get cancer in our family.” I was really surprised. She was smart and thoughtful and in a blink just dismissed the most non-discriminating killer on the planet as a possible cause for the nagging problems. Within a year, her mother was dead from her bladder cancer, after putting off appointments over and over because cancer wasn’t part of their history.

Cancer is the original equal opportunity employer. Cancer isn’t sexist. Cancer isn’t racist. Cancer is nondenominational. Cancer doesn’t care what you believe about life or death. Cancer doesn’t care about your looks or your smarts or your interests. Cancer just is. Cancer can fell anyone, no matter your strength or your attitude. Cancer isn’t a fight. At least not a fair one. When people die from cancer, they’re not losers. They haven’t lost their battles. They’ve just been overcome by an elusive, stealthy biological mystery,  that in their cases, had no true known answer to its mutable abilities. Cancer is endlessly surprising. As cognitive beings, we naturally search for answers and reasons for what we can’t understand or what we didn’t expect. Everyone gets to decide what’s best for them. We found our own way through cancer.

96D70F2B-E855-445E-8DE9-44914E2041B8Michael knew that skin cancer ran in his family and was vigilant about using sunscreen, seeing his dermatologist every three months and attacking any suspicious spots by excision or medications. My big, strong husband, who was everyone’s hero, was felled anyway. Cancer liked his body and his immune system couldn’t do a thing about it. Cancer started growing and played a 5 year cat and mouse game with my guy. 

 

We knew from the initial diagnosis that the likelihood of him surviving his orphan cancer was small. Reading the Merkel Cell website the day of our life-changing phone call was grim. We had an instant flash of recognition-our world was forever changed. 

Both of us, different in so many ways and virtually identical in others, got ready fast, an especially tough trick for Michael who always moved slowly. The big joke between us was him saying, “Would you mind removing your feet from my back?” as I blazed past him. But he knew this was different and that speed was mandatory. We learned everything we could and followed best practices, with multiple medical opinions from the top experts in their field. We had a genetic analysis of his tumor tissue. He tried one treatment after another. I wrote every principal investigator of every clinical trial I found on the Clinicaltrials.gov website. About half of them answered me and they consulted with each other about our case. We realized they were doing their best to brainstorm for a viable solution to this disease. But there wasn’t one. Michael had eighteen rounds of a potent cocktail of chemo drugs. Over 5 years, he had 75 radiation treatments.

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For 45 of them he wore a molded facial mask which was then bolted to a table to keep him still while he was blasted with rays. He took shots to support his bones which weaken during treatment. He tried a targeted therapy, aimed at a genetic mutation.  His skin erupted in an astonishing rash that covered his back and torso and eventually elevated his liver enzymes. Just as well, as the drug cost was astonishing and economically prohibitive. 

His tiny skin cancer jumped into his lymphatic system, and over time, showed up in bones all over his body causing an agonizing spinal cord compression. More and more skin lesions popped up on his head, his neck and his groin. We went to Barnes in St. Louis to try to get him in a clinical trial for one of the new immunological drugs. He was rejected, an unconscionable decision that was impossibly hard to absorb. Eventually our local oncologist was so desperate, he applied for the drug pembrolizumab or Keytruda, which was magically approved because of Michael’s terrible prognosis. 

 

And suddenly, within less than two weeks, the tumors began to disappear. He was to be a miracle responder, one of the small number who manage to wind up in the success cohort. Within a few months, he was well, normal even. All through the various treatments, he’d had positive responses which gained us months that we used as a compressed retirement. With the prospect of death always threatening in the background, we chose to spend lots of private time together, traveling and making memories which would sustain me. We spent as much time as we could with our family, reveling in the everyday moments, a dinner, lounging in the afternoon on our kids’ back deck, going to movies or just reading in the same room. 

 

B13ABF34-FC07-4571-BF78-79477F587E9BSuddenly it seemed anything was possible. But after 6 months of treatment, Michael had a profound spike in his liver enzymes. Our doctor felt compelled to stop treatment. I argued vociferously against this as he was taking other medications which could have caused the liver issues. Knowing that his disease could get active at any time, the doctor thought we should do a challenge to see what would happen. The next thing we knew, he was gone, the second oncologist we lost in a few years. So we started over with a new one. 

Each oncologist has a personal perspective and I knew right away that our new doctor was a more cautious individual than the previous one. She was opposed to taking the risk of a challenge and instead recommended continued scanning every three months. The year 2016 was treatment-free and we cautiously continued to make the most of our time. But any moment when Michael was ill, whether with a cold or a dreaded case of shingles, I was alarmed at what I saw as a failure of his immune system. By December of that year, his behavior was getting a bit peculiar. I was frightened and in January, we had two doctor appointments and scans which indicated absence of disease. I couldn’t believe it. Michael was behaving oddly and changing perceptibly. After 45 years together, there are the things you just know. After a scary night less than 4 days after receiving a clean scan, I called the oncologist in the morning to say I was going to get him into the ER for a brain MRI, the one test he’d never had. The doctor said that those tests were hard to get in emergency,  but I was absolutely determined and used all the trust we’d built over the years to get Michael to go with me to the hospital. By the end of the day, we had the test results which showed a brain cancer presentation that could only be likened to meningitis. The doctors said he had central nervous system lymphoma. I knew they were wrong. I fought back because I knew it was Merkel cell which is what it had always been, from his first biopsy to his last. Most people with that metastatic disease just didn’t live long enough for the medical professionals to see what the disease looked like in the brain. An average lifespan following his diagnosis was 4 weeks. Most people go directly to hospice. But Michael had triumphed before. He chose a combination of awful whole brain radiation and Keytruda and managed to survive for 17 weeks. 

After a long hospital stay of 32 days and nights together, we managed to get home. For years, we’d discussed how he wanted to die. First and foremost, of course, he wanted to stay alive. But absent that option, he wanted to die as undiminished as possible, not wasted away to a shell. And he wanted to be in his home, out of a medical venue, in the space where we’d led our lucky life. He sadly wondered if he’d ever have another good day, one in which he could feel okay.

0AAAA8DC-AA00-4681-B881-7D9032E97B4AHis desires became my mission. With endless encouragement, prodding and the most ingenious protein shakes I could concoct, we stayed at home and for the most part he still looked strong, with good color, not wasted. One lovely April day, we managed to get across the street to our daughter’s home to spend the afternoon, to sit together with our grandchildren and go back to our own house, content with that feeling of normalcy. Our son who was abroad, working on a postdoc, managed to stop his work and get home so he could share the last days of Michael’s life. He died a year ago today, peacefully, quietly and unwillingly, with me beside him, holding his hand.

 

I will always wonder about the might-have-beens. There were so many steps in our journey when a small adjustment could have made a difference. I used all of my powers, intellectual, emotional and persuasive to push things outside the box of standard medical care. I learned more about cancer and medicine than I ever dreamed would have been possible for me, always a wordsmith, never a scientist. I don’t know what could’ve happened, if only. All I know is that cancer ultimately presented its final invoice to us, the price being Michael’s life which he lived and loved so well.

This past year has been full of many different experiences for me. I’ve been out in the world and also by myself. A lot. I’m deep inside myself exploring, probing and searching for my own answers, for a way to live that feels right for me. I remain in love with Michael. I expect I always will be. We had a bond that could withstand everything life tossed against it.

62786F4C-875C-43AD-A5ED-358C3A8EDBC4One of his favorite movies was The Ghost and Mrs. Muir. He watched it almost any time it appeared on late night tv. The story is one of a widow who occupies the home of a sea captain who’s died, but insists on being in his house with her, as if she’s the invader of his personal space. Of course, this isn’t a perfect metaphor for what happened to us. But I often feel that we will be in our home together, until it’s my turn to be done with whatever lies ahead of me.

5A5C3770-748B-4982-A38F-C56A43C28E3AI didn’t know I could survive a minute, a week or a whole year without Michael. But here I am, still alive and evidently destined to go forward. So I will, holding him in my heart and feeling the buoyancy of his presence which shows up unexpectedly and fills me with sensations I’m learning to accept as my new normal. As Eleanor Roosevelt said, “You must do the thing which you think cannot do.” That’s exactly what I’m doing. The magic that Michael and I built helps me. One minute, one week, one year. On I go, on we go. I miss him every day. 383C8BD5-7519-43B3-9909-11B8EAB09702Almost another full year has passed since I wrote this blog post. I still feel virtually the same as I did back then. I remain in love with Michael and I’m still mystified by the incredible connection that lives on between us, though he’s been dead almost two years. I’m still thinking away. And I’ve learned some things about  cancer and what it can and can’t do. I wanted to share my reflections in the hope that they’ll help someone out there who’s having a similar experience. 588B47DC-0391-43D5-8936-603D3FDDCD23

First, my interest in the biological underpinnings of cancer has stuck with me. I still read a lot of scientific articles and have taken a number of science classes in the past year. Molecular biology had a big impact on me. I recognize that Michael’s cancer was a remarkably successful organism. That may sound odd, but the truth is, it managed to adapt and survive multiple forms of treatment and roar back stronger time after time. More than ever, I understand the complexity of trying to cure a disease that’s alive and mutating constantly. Knowing that no matter what a person’s attitude and strengths may be, there are some creatures that survive no matter what, changes the way you think about cancer. People who die from cancer aren’t losers and didn’t do anything wrong with their attitudes. They’re just overmatched. Individualized treatment seems to be the only real solution and in American medicine, that’s a heavy lift.8F672C05-FA0F-4E64-811B-97D37F4B5431

Secondly, for some of us caregivers, the trauma of the illness and death process leaves a state of mind that can only be likened to PTSD. I see the vestiges of all those desperate days in myself. I have sleep issues and still find myself stunned to realize that Michael is really dead. I can roll over in the night and wake myself, worried that I might be disturbing my guy and then remembering he’s gone. I’ve turned into somewhat of a germaphobe. I was so worried all the time about some random infection that might hurt Michael. So I’m always looking at how people sneeze or cough into their hands and touch surfaces, wanting to spray everything with Lysol and carrying Purell everywhere. I wonder if I’ll ever stop doing this neurotic stuff.ADC07A75-250B-4C9F-8CDE-D00D9FD655D8

But there is the upside. Learning to live in every moment has stuck with me. I’m much better at keeping my perspective and not getting bowled over by the small stuff. I’m more mindful about how I choose to spend my time and with whom. I don’t want to waste any of it. I want to be the best version of myself. I spend time with my family. I spend time trying to take care of my friendships that have proved sustaining and meaningful. I appreciate nature every day. I garden in my attempt to create habitat for lots of animals while donating beauty to my surroundings. I read and I listen to lots of music. I try to learn something new and every day. I’m politically and socially engaged and I share my views and feelings in multiple ways. My life isn’t empty – it’s just less full.7578FEB1-9A01-4010-A91F-91D74DC3D6B7

I didn’t know what I’d be like without Michael. After 45 years together, I’m keenly aware that there’s not enough time in my life to ever experience anything that will ever approach the magnitude of what we shared. But I’m making an effort to compile our stories and share them with our children and their children, the ones here and the ones to come. Our saga is rich, and while we will wind up as dust mixed together in our garden, our history will live on. I’m satisfied with that assignment I’ve given myself and it motivates me to work even on the saddest days. I’ve made it through our anniversary this month. Upcoming are my birthday, the anniversary of his death and Michael’s birthday. They’ll be hard but easier than last year. The magical and inexplicable presence I feel with me every day helps. As a pretty grounded, realistic person, I never imagined I could feel such an ethereal companion. But whatever. As Michael frequently said, it is what it is. The good news is I’m finding a way forward that has brought quality to my life. In the end, there is life after cancer robs you. Who knew?4A803B2C-7361-471A-9AC1-416E2D2FBE16

 

This Was Last Year – My 67th Birthday Happy Birthday to Me

7AD03FC1-BEF4-444F-B390-3F2B63EB698EIt’s my birthday. For some reason, birthdays have never meant very much to me. I know about the day I was born because my mom told me that story over and over again. She and my dad were living with my grandparents. She went into labor during the day when my dad was working. My grandparents didn’t have a car so they asked their neighbor Vern if he could drive them to Michael Reese Hospital in Chicago. Vern was nervous and driving fast so inevitably, he was stopped by the police. After they assessed the situation they wound up providing an escort for poor Vern and my mom.

Mom was in heavy labor but there was no chance of my arriving in the car. She told me she had an hourglass-shaped uterus and her kids got stuck in the narrow part. As her third baby, I was no exception. As she struggled away, the doctor, hardly dripping with my empathy, sternly looked her in the eye and said, “Dorothy, do you want to have this baby?” Evidently she complied. The other part of that day that she spoke of most often was getting wheeled to the nursery and looking for me amongst all the squalling infants. She said I was sound asleep, naked with a rashy rear end, elevated and ignored. I guess that was a sign of things to come.8454AA56-59F7-453A-BBE5-7F89995ECA25

There are no birthday photos of me in those little pointy hats with the elastic chinstraps or cakes and balloons. I know there were acknowledgments of my early years because I remember being told to make a birthday wish every year. I always wished I would get my own horse. After awhile, when it was clear that was never happening, I stopped the wishing part and evidently relegated the birthday to a lower echelon than big deal. 07ECB78A-81AA-4F62-A717-25C8C397F942

I did have a 13th birthday party. I think this happened because we lived in a Jewish neighborhood where many kids were having bar or bat mitzvahs that year. I had a light blue dress with white threads sewn into flower shapes on the bodice. I felt very grown up. I expect that was the point although no ceremonies were involved which inducted me into adulthood.

 

I also had a sweet sixteen at a restaurant called Jenny’s. I do have photos of that one. I got really nice gifts, felt included in the often unattainable cool crowd, and was happy to feel part of the social world around me. That made up for the scrabbling my family always seemed to be doing to cover the most basic needs.

So, this birthday. Why bother thinking about it? I was never daunted by the passing years. On occasion a birthday meant something. I was excited when I was able to vote. I never cared about being able to drink legally because I rarely drank, but still I felt legit. Given the lifestyle of my late teens and twenties, I noticed when I hit 30 because all my peers thought we’d be killed during the revolution of our youth, if not by the establishment, then perhaps by all the drugs we tried.

There was one birthday in 1989 that felt weighty because both my parents were diagnosed with cancer that year. Simultaneously Michael was elected to our local city council and promptly collapsed with a herniated disk that required surgery in the midst of all the other chaos. That year followed the emotional havoc of 1987 when my dear cousin committed suicide and 1988, when my beloved Fern took her life. Those three years made my world tilt on its axis. I was never the same after those traumas.1C91002F-578A-454B-9BAC-9788B7FE6A60

So I sailed on through 40, 50 and 60. My kids decided to throw me a big surprise party for the 60th and invited everyone they knew who’d been connected to my life. The surprise part went away when all those invited said they were coming and the kids needed some help paying for all the refreshments. Ha.

But that 60th was my last birthday with ease. The next year, Michael was diagnosed with cancer. Every second, every minute, every day was important as we wended our way through the miasma of disease and treatment. That’s when I really started learning how to live day by day, instead of just spouting off about it. Every morning when I opened my eyes and saw Michael breathing was better than any birthday. He would always say, I woke up so it’s a great day. I don’t think I’ll ever forget him saying that. 779F1F0B-C2A7-405C-9DD7-DFEB6E4AA3A4

Last year, May was a downhill slide for him. On my birthday, I sat holding his hand as he lay quietly, mostly comatose, me pleading with him silently, please don’t die on my birthday, please don’t die on my birthday. And he complied, dying four days later on what I believe was my brother’s anniversary with his first wife. May is such a full month in my family.

So, why be spending so much time thinking about this birthday? I suppose it’s because I will be 67, the same age that Michael was when he died, the same age that my father was when he died. What a strange coincidence. I learned that not everyone will really  live to be very old, unlike what we’re told  by countless articles and television commercials. Some of us will be gone tomorrow or the next day. No one really knows what may happen any second. And that’s probably a good thing because when fearful times come, no amount of anticipation can ever truly prepare you for the hit.

So on this birthday, just in case,  I’m taking time to notice what this age means for me. I’m mindful that my body feels and shows wear that didn’t used to be here. A graceful adjustment to those changes is a challenge.  But I can still swim four or five days a week and while in the water, I’m still as able as I ever felt. I’m aware that my mind is as keen if not keener than it’s ever been. I feel intuitive and wise. I’m still quick verbally and can think on my feet. Michael wrote that an early death would mean missing Alzheimer’s. I can relate.

 I’m still a political creature. I recently read a description of the French writer Octave Mirbeau which said, “Above all, he was a tireless campaigner for the causes of truth, justice, and the downtrodden—a man with very advanced ideas. A fellow novelist once said of him that every morning he got up angry and then spent the rest of the day looking for excuses to stay that way.” I chuckled when I read that, reminded of my own daily rage. I’m glad my youthful inclinations weren’t merely a phase but rather a foundation for my life.

As parts of me decline, I’m gaining ground in my head and my knowledge is expanding. I’m grateful for insatiable curiosity that has a life of its own even as I remain angry and frustrated that I didn’t get to have Michael until we were both ready to die together. If that time would ever have really arrived.  I never stop wondering or exploring even on the days when I cry at the drop of the proverbial hat or at a note of one of the zillion songs that remind me of him.

 

 

Then there’s the gratitude. I’ve been incredibly well-loved. I had a wonderful partner who was busy worrying about how to comfort me as he faced his own death. The same guy who sold a catalogue of music he’d built for starting his own record store 42 years ago, to another person who also wanted to start a store. He did that so he could buy me a ticket to fly to California to visit Fern where I could decide whether I wanted to commit to our relationship or walk away. Yeah, that happened. All around me are the manifestations of that love which kept growing, despite everything and anything, which lasted until his death and is still burning alive inside me. He said he’ll be with me forever and I believe that. How lucky am I?

 

 

Then there are my two children who are as close to me as children can be to a parent. They trust me, value me as a person. and they love me deeply. With all the twists and turns life takes while you raise a family, I got one that’s real, deep and substantive, another precious lucky gift when such things can often turn out so sadly. I even have a wonderful relationship with my son-in-law and am lucky to have two healthy grandchildren. I know so many people who hunger for these things in their lives.

 

 

I have my sister and sister/cousins who provide a web of support from wherever they are. And I have other extended family with whom I’ve managed to maintain caring relationships.

 

 

And then there’s my chosen family, comprised mainly of young people who were part of our family life through ties with my kids or other random connections. They rejuvenate me and keep from floating off into old people land. They enrich me by sharing their lives with me and continuing to be part of my world as they grow and develop their adult lives. If I was religious I guess I’d say I was blessed. Mostly I just feel fortunate. I’ve been able to cast a wide net which makes for a stimulating world.

 

 

I love my beautiful, old beater of a home. I feel as good in it today as I did when we moved here 40 years ago. The rooms literally vibrate with warmth and comfort. That it could be this way after Michael died here is testimony to the endurance of love. A few harsh months didn’t diminish what makes a home for years.  And there is my beloved garden. After hurling myself at this vast space for so long, it is my gift to everyone who sees it. I never get tired of looking at its beauty, even though I know the weeds may kill me and I’m likely to fall over in my flowers while I attempt to control the chaos of the life that pushes out of the ground without my permission.

 

 

I’m grateful for all the music I listen to daily. When I was working, I carried a notebook around for the last several years, noting what I wanted to do when I retired, that I didn’t have time for while being busy all day. Listening to whole albums that I loved was on that list and I’m elevated by doing that again.

I have dear, loving friends, some who’ve been with me for practically my entire life,  and others who are new or newly discovered. They help me navigate my days. I rarely feel lonely and when I do, it’s only for Michael.

I’m grateful for books, movies and art. I’m grateful for Netflix and hunky Jamie Fraser whose fictional character reminds me of Michael.  I’m grateful for my sense of humor, twisted though it may be. I’m grateful for the travel I’ve been able to do, not as much as I wished for, but certainly more than most people on this planet. I’ve been stretched intellectually and emotionally by being in different places and most importantly, I’ve righted my balance with the perspective gained by moving around.

 

But maybe most of all, I’m grateful that I’ve arrived in my full self. I am mentally and emotionally fearless. I feel unintimidated. No one scares me. Truth is my friend. And that makes life easier. Stripping away the phony rules of behavior is wonderfully liberating. There’s a lot to feel good about in my life. I know that if I still made birthday wishes, what I’d want this year is as unattainable as my horse. So far no one has found a way to return Michael to me. But in honor of his joy in life, on I go, hoping to remember always,  that he gave everything he had to wake up one more day. Not trying to do that makes me feel less than. I don’t like that feeling.807A9F37-6CE6-4892-B4DE-26A80F69445C

So happy 67th birthday to me. Maybe I’ll live longer than this year. Maybe not. But I’m acknowledging this time and this self that is me. I’m good with that.

Life Circles

 

I never knew my dad’s parents. They died before I was born. This wasn’t unusual. Many people grow up without extended family. My parents didn’t know any of their grandparents either.938EEA46-7260-4505-8367-07EB4D6EB620 However, my mom’s parents were always part of my life. I loved them.  But they weren’t the type of people who had much input into how I grew up. They were immigrants with limited ideas that didn’t seem particularly relevant to their current time. Although they were loving, they weren’t engaged with more than the most basic parts of my world. Food, a new dress and banter around a kitchen table. Aside from that, they didn’t have much to offer to me, a child of the 60’s. My grandfather died when I was a freshman in college. My grandmother lived long enough to meet my firstborn child. We appreciated and loved each other but their deaths weren’t earth shattering for me. 

When I became a parent, we traded visits with my mom and dad, us driving to see them while they took turns coming here. But they were getting older and life became more complicated. When my daughter was 5 and I was pregnant with my son, my parents moved from Chicago to live near my sister and me. They’d both experienced significant health issues, and running up and back to the city was becoming more and more challenging as my life got busier with kids and work. Having them close meant that I could more easily take care of them as they aged. 

They arrived just before I had my son. I had three months’ maternity leave and another month when I was able to take him to work with me. He was a happy, luscious baby and my parents were entranced by him. My mom said, he’s a good one – I’ve seen a lot of babies and I know. They offered to watch him during the week while I worked. Although anxious about their health, I was relieved to have him in a safe, loving environment. The early months of my daughter’s life entailed three different caregiving settings and I was worried and stressed about her all the time. With my parents here, I was able to nurse my boy on my lunch hour, call and check on him as often as I wanted, and be generally relieved that he was so adored all day. 

But during that time, my mother was hospitalized with newly developed diabetes and my father declared he could take care of my son by himself. I found this astonishing as I couldn’t remember my dad ever feeding and changing a baby in my life. He managed it. But I didn’t want to burden them with the responsibility so I found alternate care. My folks were beside themselves and so emotionally distraught that I let him go back to them. They managed to stay well until he started day care at about 14 months old. He was with them for just over 10 months. 

We spent regular family time together and my parents were babysitters and overnight hosts on numerous occasions. My mom, so perpetually girlish, played dress up, fabricated amazing fanciful stories, and read lots of books. Dad took everyone out for dollar pancakes and made sure no one got injured during adventure games. My kids were lucky to have so much extra attention. They were having the extended family that I’d had, but with greater intimacy with my parents than I’d had with my grandparents. It was lovely.  Sadly, a scant two years after they moved here, mom and dad got cancer within 5 weeks of each other. Our world changed overnight. My mother survived her breast cancer but my dad succumbed to his bladder cancer in under 4 months. My daughter was 8 and my son was just shy of three years old. 

Both my kids were traumatized. My daughter was older and able to reason things through, to understand and accept our explanations about cancer and death. My son’s experience was different. He was too little. He couldn’t make sense of anything.   He’d never been a great sleeper and for the next several years couldn’t sleep through the night. He wound up in a little nest on the floor by our bed, always reaching up with his hand to make sure we were there. He was terrified of death. He argued incessantly about the unfairness of having no company in his bed, despite being surrounded by a myriad of plush companions who “weren’t humans.”

When he was six and more cognitively aware, we got him help so he could work on the fears that had started when his grandfather effectively disappeared. In his world, my father had vanished with no real explanation.  After some time, he learned self-soothing skills and eased into a more normal schedule. The bond he’d built with my parents went forward with my mother. 

E563E987-A54D-45D7-96F3-98F20AA4B5A5.jpegAs he grew older, he maintained an intimate relationship with her and considered her a confidante and a person of trust. He never went through the phase of distancing himself from her like so many young men transitioning to adulthood. He always spent time with her, eventually returning all her caregiving with nurturing of his own. As she aged and became more limited in mobility and cognitive function, he visited her with his movie camera to interview her and save her memories. He took her out to breakfast, her favorite meal,  and wheeled her outside through the parks and our campus community, singing and chatting with her, tucking sprigs of lilacs behind her ears and making her convulse with laughter. I marveled at his consistent devotion and often wondered about the connection that was created during those early months when he spent all his days with my parents. Would his relationship with them,  and most particularly my mother,  have been the same, absent that shared living time? Who knows? On the eve of her death, he came to say goodbye. As I watched them, I was powerfully moved by the depth of the extended look they shared and I felt the passing of the powerful emotions between them. I’ll always remember that look. I know that he still misses her every day.

I spent my career in a small intimate office working with three women for over 30 years. They were a few years older than me. When they turned 65, they all retired. I stayed on and helped train the new employees, but I was the classic fish out of water and had no idea how I’d get through another three years until I became eligible for my pension. Then my daughter became pregnant. I realized that I had enough years to retire as long as I had income to cover the costs of my health insurance until I was Medicare-eligible. That amount was significantly less than the cost of day care for an infant. A perfect solution for everyone. I chose to provide my daughter the same gift my parents had given me, the ease of going to work without fear for the baby. 

I retired in October 2010 and began caring for my grandson when he was seven weeks old. The adjustment was greater than I anticipated. I’d been working since I was 15, always having a job as I went through my older high school days and college. Except for maternity leave, I’d never spent all day every day with my children except on weekends. My days with Gabriel were long and challenging,  but I fell deeply in love with my grandson. My husband did, too, coming home after teaching, snuggling into naps, reading, playing and singing. My mom, who was in her late 80’s and growing infirm, moved in with us. Our son, who was working on his PhD, spent half his year living at our house. We led the multi-generational shared living situation that had been more common in previous generations.

The rhythm of our life came to a dead stop in April, 2012, when my husband was diagnosed with rare Merkel cell cancer. He got through his initial surgeries and treatments and had the summer to recover before returning to teaching. But we knew we were living under the threat of an incurable orphan disease. Meanwhile, I managed to continue to care for my grandson with a bit of schedule juggling. We hoped I could keep him until he was 3, a good age to start to day care and learn socialization. He was the bright light in the midst of our fear and anxiety. I was sad to see him move on to preschool in August of 2013. 

Michael’s health seemed stable. By that time my daughter was pregnant with her second child who was due in January. I would have a few months off and then begin caring for the new grandchild in February, hoping to give him the same care as his brother. But life threw us its worst curve in November of that year when Michael was diagnosed with widespread metastatic disease. We were told that absent treatment, he would have 2-3 months to live. All plans vanished. Michael began chemotherapy in December after wrapping up his teaching career. My daughter and son-in-law secured a daycare spot for the new baby as I intended to devote myself to Michael’s care and become his medical advocate. We made plans to move my mother into assisted living as I could no longer divide my attention between her and my husband. The big question was whether Michael would tolerate his medications and stay alive long enough to meet the new baby. I felt like I was living my parents’ life with Michael teetering on the edge of death and my young grandson facing the same challenge as my children had.

Michael defied the odds. He responded well to treatment and was here to meet his new grandchild. And Gabriel got older, past the time when my son could make little sense of what was happening to his grandparents. As he did, his cognitive skills grew and although we kept details of Michael’s cancer from him, he understood that grandpa was sick. For a few years the ups and downs of Michael’s health didn’t interfere with Gabriel’s daily life or his emotions. He felt stable. His grandpa took him to swimming lessons and helped him practice riding his two-wheeler. On the bad days, they curled up together and watched kids’ shows and movies on television.

All that changed in January, 2017 when Michael’s cancer first subtly, and then with a roar, returned and affected his brain. After a few bewildering weeks with tests that came back negative for disease, I dragged him to the ER to get to the root of the problems. A brain MRI unearthed widespread cancer, like a meningitis of the brain.  We wound up staying in the hospital for 32 days and nights where Michael opted for brutal treatment that offered little hope for survival. While he struggled on, the hospital room became the place where the grandkids saw their grandfather. And it was weird there. He slept a lot and was barely communicating. I tried to be normal but was incredibly distracted. Their visits were short, scary and unsatisfying. 

Somehow, Michael survived those grueling weeks and we returned home. He wasn’t the same person, although for a few weeks, he regained enough strength to go across the street and visit the kids in their home. But he was confused and frustrated by the cancer advancing in his brain. One time, he was short tempered with Gabriel who was just being a normal, talkative 6 year old boy. I admonished Michael who was immediately regretful. He apologized to Gabriel. That little boy said he understood that grandpa didn’t mean to be harsh and that he knew the cancer had corrupted his brain. An unforgettable moment. As days passed, Michael gave Gabriel his pocket watch which he’d always loved because it had a cool red light that was fun to turn on and off. When he got it, he said he understood that this was unexpected gift that would always be a memory for him. 

In late May Michael died at home. That afternoon, our family gathered and Gabriel asked for the bandana  Michael wore during chemo and the one which he always wore in camaraderie. We all began to grieve and make our adjustments. 

During this past year, I have been operating on several planes. First, there is my personal journey about the death of my best friend and lover who was with me for 45 years. Then there is the view from my internal observation deck as I stand at the edge of my inexorable  physiological diminishing. This  has been an interesting challenge as my body changes and I face the fact that my best physical years are behind me. I would like to be graceful about this transition although I wrangle with my expectations for myself and the expectations of others.  

Then there is my role as mother to my grieving children. Although they’re adults, they need to share their feelings about what for many years was our tight knit foursome that stood against the world. Michael was a huge loss for them and now, I embody not only myself, but the institutional memory of our family. They were always aware that nothing lasts forever. But for a time, it seemed like Michael would. 

And finally, there are my grandsons, and most particularly Gabriel. I worry about Tristan for whom Michael’s death mirrored my son’s experience with my father. He was too little to understand what happened aside from knowing that grandpa was sick. One day he was just gone. For awhile, he looked for him and he can still identify him in photos. But I have no way of knowing how this death will manifest in him until he’s older and more able to express himself. 

But Gabriel. He remembers everything. He lived with us for almost three years, every weekday for most of his waking hours. As he helplessly watched Michael slip away, he was alive with awareness. Suddenly vulnerability entered his life. He sounds like an old guy sometimes when he says things like, life just isn’t the same without grandpa and that everything has changed. He recognizes mortality, his and everyone else’s. Thankfully he has the verbal skills to express his feelings but it is daunting to stand in the face of his questions and fears. Trying to be truthful while providing comfort is hugely challenging. What do you say to a fearful child who says promise me you’ll never leave me? He’s smart enough to consider what might be inherently dangerous. Those things are to be avoided.  He’s also thinking about a career which is both safe for him and which may allow him to understand why some people survive cancer and others don’t. He likes to share private time with me so he can speak his worries and feel my presence which he associates with safety and security. If I cry, his face crumples with fleeting looks of fear, the desire to comfort, and the hope that I will emerge on the other side, smiling, just being grandma. Quite a learning curve. 

The sweetness and tender, open love of this sensitive child lays across my shoulders as both a curious balm and a heavy weight. He reaches into the parts of me that are still for giving to others. And because he is needing so much reassurance, I dig deep to assuage his vulnerability. If I live long enough, will he and I replicate the relationship my son had with my mother? Her old age doesn’t appeal to me because she was so physically limited and eventually dementia appeared. Could a bond with a grandchild make that work for me? That all remains to be seen.

I often feel I’m stretched beyond my capacity. Needing to be okay for the ones who love me can be a heavy load. I’m trying because it’s my nature to give. But probing around my insides is a necessity and more pressing right now. Balance is always hard. 

Life feels like overlapping circles. Sometimes I don’t know if I’m leading my own life or my mother’s. Our similarities are obvious and profound. Of course there are vast differences as well. She lived for another 25 years after my dad died. She wasn’t very motherly toward me and instead required a lot of care and support. But she remained a wonderful grandmother. I don’t know how much time she spent in deep introspection. That wasn’t her way, despite her astute perception about other people. I suspect I will keep paying attention to everyone, while trying to deal with myself and attempting to stay as even as possible. 

I’m still exploring life on my own. I have so many questions and interests which range from mundane to obscure. Managing my time and trying to be a mindful mother and grandmother are important to me. But often I’m left wondering about the inexplicable sensations that push aside everyday challenges and are so unexpected. Why do certain pieces of music make me feel that I’m breathing in the essence of Michael, filling me with peace and contentment? What is that about? I have no idea. As he often said, it is what it is. Wending my way through the density of all the layers, mine and everyone else’s,  is my ever morphing daily mystery. I’m trying to live life to the fullest, to leave the best of me with those I love.  Inch by inch….

The Soul of a Garage

I’m not really sure what a soul is – the dictionary defines it as the spiritual or immaterial part of an animal or human, regarded as immortal. Or, the embodiment of something else, like being the soul of discretion.

For a lot of my life, soul was about music, Aretha Franklin, Otis Redding, James Brown, Van Morrison and too many others to name. But as I’m kind of science-y and am interested in the brain and the tenets I learned about matter and energy being converted rather than being destroyed, I’ve come to think that soul is endless possibility and whatever people perceive it to be. And that perception varies widely from person to person.

Lately, I’ve been spending a lot of time in the garage. That’s mostly due to my bad knees which are overdue for intervention that exceeds the palliative kind. I deferred dealing with them while Michael was sick over those many years, always worried that he might need me while I might be unable to help if I was recovering from surgery. That turned out to be true. Although, in truth, he would always look at me, bemused, knowing that me volunteering for surgery was as likely as me volunteering to be shot out of a cannon. Yeah. I don’t like medical stuff, at least in relation to myself.
Last year when he died, I finally caved and went to see the orthopedic surgeon. Imagine my surprise when he told me I’d have to wait for knee replacement because studies showed that grieving people don’t respond well to that procedure. A surgeon who wouldn’t cut. Amazing. So I tried some different injections, but bone on bone knees just really need to be fixed. I’ve gotten used to the pain and the creaking. To cope, I’m chock full of self-help ideas that keep me active. One of my best ones was deciding that potting plants while seated in a place where dirt doesn’t matter much, would solve some of my problems. Hence the garage. I sit in there, working from a chair and it’s turned out to be a good choice.

But the garage was always Michael’s domain. I had some gardening stuff stored in it and because he was orderly, I always had room to park my car inside. But aside from going out there to chat with him or help when he needed an extra pair of hands for a project, I really wasn’t part of that space.
As these spring weeks have gone by, I’ve been in there for a couple of hours every day. And I started looking around. So many tools and gadgets and boxes and unfinished projects. After awhile, I started feeling inexplicable sensations that would just suddenly appear, washing over me or surging up in me. And I would be left with incredible emotions, sometimes sadness, sometimes elation, sometimes anger and often, frustration. Just so random and unpredictable.
But I’ve started figuring this out. I’m thinking that although we don’t normally attribute spiritual qualities to inanimate objects, it appears to me that I’m absorbing the remnants of Michael that are apparently embodied in the garage.
He loved being out there. Throughout our 40 years in the same home, I casually accepted and grew to depend on Michael’s multiple interests and talents that he employed to keep our big old farmhouse in mostly one piece. He taught himself carpentry and was a decent auto mechanic. Over the years he acquired lots of tools for both inside chores and yard and garden work. While living together I never really stopped to marvel at the fact that he never found a challenge that he didn’t meet with an idea. He just did stuff.
Things weren’t always tame or smooth. When he was frustrated, his famous temper would rear up and even in the house, you could hear things being heaved around out there, accompanied by a string of expletives which mostly made me and my kids laugh.


He’d be out there pounding away, sawing, measuring and using his ridiculous collection of clamps that ranged from teeny to enormous.
All our shelves were built in that garage. The ones for books, the spice racks, the CDs and the vinyl ones. His display cases for his hot sauce collection and his buttons and music memorabilia. The long coat rack in our back hallway was built there.
Boxes of keys, doorknobs and cellphones are on the workbenches, saved for the myriad of projects he wanted to build for use in his classroom. His fishing gear, slalom water ski and his beloved bicycle are sitting in their places. His ancient backpack, sleeping bag and our camping gear are there. An unfinished cornhole game for our grandchildren leans against a work table. The bolts are so big I think it’ll last a hundred years.


All his canning supplies are there for his annual tomato, salsa and pesto creations. Then there was pickle making, corn relish, cucumber salad and who knows what else as he varied the vegetable and herb gardens every year.
And there are branches that he’d cut. I have no idea what the plan was for those. Our daughter’s first little rocking chair is up in the rafters-I know he intended to refinish that one day. Then there’s the wood. Wood in all shapes, lengths and sizes. The love of wood was a real thing for him. He made a beautiful drafting table that he used for drawing his abstract pictures. A few hours in a lumber yard was a favorite pastime.
So what does all this mean? I’ve come to believe that the garage is holding parts of Michael in its walls, in the tools, in the varied sports gear and the hobbies evident there. When I sit there, the essence of him is in there with me. The garage has soul. Last year I was too raw to notice anything out there. I’d feel Michael’s presence in our house. The sensation of what that is defies all my words. When we moved in here, we both felt that good things had happened in this space. And now the spirit of him and us and our family has joined what came before us. I wondered if going through the end of his life and his death in this our safe cocoon might change the way I felt about being here. But that didn’t happen. This is still the place with all the good vibes.
And the garage has them too. As some of the haze of grief recedes and my sharpness asserts itself, instead of feeling less of Michael, I feel him more. My awareness of the breadth of his skills and talents is often breathtaking. I admire him more than ever. He wasn’t just about teaching or public service or even being a loving husband, father and friend. Some people lead tiny lives. His was big and adventurous and the essence of him has rippled out and still occupies physical space.
My garage has a soul. Being in it is being immersed in my life partner. What an unexpected gift. I add it to my pile of treasures from our shared life.

I Will Speak Out

 

407FF0AD-61C8-4EFC-9B8F-005DFF3DF2E7For you with the well-meaning intentions.

I won’t be robbed of my voice.
I will not be told what I’m supposed to feel.
I will not be told what I’m supposed to do.
I will not be told what I should expect.
I will not hide myself to make life easier for you.

Keep your platitudes.
Stop trying to comfort me.
You are afraid.
Or you think you know things that you don’t.
I don’t care what happened to your friend or your sister or your mother or your daughter.
Don’t tell me that whatever happened to them will happen to me.
Stop telling me about what time will do for me.
We, we humans, are not all the same.
You don’t know me as well as you think you do. Or as well you want to.2812C729-7025-4CB5-9937-145DC997CD28

I know me. I swim inside myself and I have been in here for decades. And I’ve been busy. Figuring me out.
Find the courage to look at the me that I am right now.
You can’t predict anything.
You can’t tell me what will happen.
I am what is, right now.
And right now is all that matters because tomorrow is anyone’s guess.

Right now song lyrics pierce my heart.
Right now I want to show the new best thing to my partner who is gone.
Right now I am brimming with stories that I only want to tell one person who is gone.
Right now when I worry I want to lay my head on the chest of my best friend who is gone.
Right now I remember powerful moments of passion for my absent lover who is gone.
Right now I want to talk about my children and grandchildren with my husband who is gone.
Right now I want to sit in a movie theater or a concert venue with my hand entwined with his as it always was. But he’s gone.
I want to talk about the news with my person who shared my views. He is gone.
Right now I know that I am uninterested in trying to fill the void left by my partner, my best friend, my lover, my husband. Who was all of those in one body.
Stop telling me what might happen.

I don’t care what you think.
I am still in love with the same person I loved for all the life that came after my teens.
And I’m in my mid-sixties. I’ve earned my wisdom.
I don’t care what you think I should want.
More importantly, I don’t care what you hope you’ll want if you become like me – the person whose person is gone.

What you want or need is not what I want or need. I never want to be the person who offers what is my version of your truth.8DA44C4A-CA87-4AA2-AE6E-EED244C2267A

I’m reading a book called Mad Enchantment, a book about art.
And that title describes what I feel for my person.
Still. An inexplicable magic that lives on unembodied.
And I think it will for always, until I die too. Mad enchantment.
If you’ve never felt this, I’m sorry. But I did. And no one gets to dilute it. Don’t believe it if that’s what you need to do. But this is my reality, not yours.
You don’t get to steal this from me.
With your good intentions.
Just be quiet. Or go away.

Expectations and Dogs

83A1B9C6-0304-4F8F-A023-F3A4498D752FI have been pondering the expectations I have for myself at this point in my life. Wondering which ones stem from my core and which ones I derive from cultural norms, at least norms as I perceive them through reading, conversation, and the overall seepage of daily technological input.

I remember some kind of quiz in which you described yourself starting from the most general category. Eventually you would add more refined adjectives to give a stranger a picture of yourself. My initial category was human being. Next was woman. Sometimes I was woman first. Daughter, sister, friend. Political entity. Girlfriend, lover, wife. Mother. Caregiver. Animal lover. Intellectual, confrontational. Passionate, questioning, psychologically daring. On and on. As I think myself through all these iterations and concepts, organically I wind up separating my life into time periods. That seems logical. As we evolve there are natural age demarcations in development that go along with growth. Some psychologists measure growth by decade. Early childhood, the first ten years, then the march through adolescence and the teens and finally the 20’s and onward.

Right now I am a widow in my sixties, coming up on the famous one year mark since my husband’s death. I don’t know how that one year got to be a societal thing. Wait a year before making any important decisions. Why a year? That’s just a sliver of time. What’s the magic in those twelve months that renders anyone more or less able to think or act?

I haven’t done anything that seems to fit the cultural expectations for this first year. My doctor’s advice was  to sleep, rest, eat healthy and exercise. Make no demands on yourself.  Well, I exercise. I’m working on the other parts of her advice. But the journey through Michael’s illness changed the way I feel about time. The high energy level I’ve had my whole life has slowed a bit and will inexorably become even slower as I age. So I’ve lived at a rapid pace this year and though there are times when I sit and relax, my inner furnace is blasting away and compelling me to move ahead with anything and everything. I no longer feel I can count on the tomorrows that used to feel they would roll out forever. My insides say, do it now. And I’m listening.

Somehow while thinking all this through I’ve wound up pondering my life with pets. Sounds strange, but they are metaphors for periods in time. I find that as I’ve moved through life, each companion reflects what I knew about myself, what I expected within the context of the duration of their lives. Thinking of who I was when they lived seems more relevant to me than the “one year rule.” So I need to give them their due.  They are windows into why I am this person at this moment. In at least a little way.

Early childhood. The expectation that it was our normal to share a life with pets.

EE81D9D7-1BF3-4BF5-9562-BB0E5428D463 Our home always had animals in it. We lived in Sioux City, Iowa at the time of this photo. I’m in the stroller. During those years we had a golden cocker spaniel named Trixie. I have no pictures of her. I remember her being unspayed which meant that while in heat, my mother had a lot of extra work to do. I was at the floor level with Trixie who wore diapers like me. Evidently I pushed my relationship with her because she bit me in my armpit and was given away. We moved houses and along came the next dog. King. Here I am with my arm around him. Of course, he was the family dog, but for me, that sweet face defined all my future pets. He shaped my vision for all my animal companions. The collies. Loyal, gentle friends who wanted to do what you needed them to do. Who looked in your eyes and felt you. Michael always said I liked intellectual dogs who thought like me. An astute observation. I wasn’t about playing ball and teaching tricks. I was about bonding and interacting. 5CDE10E5-649F-4948-8155-C6CC907AC49FI remembered  his gentle nature my whole life. When we moved to Chicago where we’d live in an apartment instead of a house, we had to leave him behind. My first big heartbreak with a pet. But not enough to stop the emotional risk we all take when we commit ourselves to loving someone who will likely die before us. A key lesson learned. And one which set an internal expectation of the cost of love.

In Chicago, my brother worked in a pet store and from age seven through my teens, we had a variety of critters, turtles, birds, cats and a few puppies who always outgrew our limited space. At seventeen, I graduated from high school and went off to college. I promptly got a dog which I smuggled into my dorm room. Arby grew fast and I deported her to my parents who eventually gave her away. My mom said she lost five pounds trying to walk her during the first week she was in Chicago. 

I needed a pet for me. When I finally moved into an apartment, my boyfriend at that time and I went to a friend’s place where we each chose a puppy from a large litter. His was Frankie. Mine was Herbie, named for the philosopher, Herbert Marcuse. She represented my ascent to independence. I was ready for the responsibility of my own animal. My relationship with the boyfriend was troubled. My relationship with Herbie was wonderful. A meeting of the souls. We slept curled up next to each other. She was what I wished for in a pet and I believe she reflected my values, loyal, attentive, unwavering. I was acting out my relationship expectations with a canine and figuring out what I needed. She accompanied me into my life with Michael. In the photo below, she’s the one lying with her head between her paws. Her one surviving puppy Tubby from a two puppy litter, is to her left. 0FDB93EA-C889-4C11-92B2-A482BF60D40AMichael and I were living communally at the time with a total of six people, four dogs and a cat. But Herbie and I still had our private thing. One night after arguing with Michael, I went to lie in my bed. Herbie came into the curve of my body as she’d done since she was a baby. Michael came into our room to talk and reached out to me. Herbie snapped at him. He was terribly disappointed. In the end, she remained a one-person dog. When we moved out on our own, she became aggressive toward strangers and bit our paperboy. I knew that keeping her was selfish and socially irresponsible.  So I gave her up. Michael took her to the Humane Society. I was so devastated, I sent him back the next day to get her. He was told she’d been taken by a farmer in a nearby community. I never really believed it. But I learned that I was growing up. Instead of having it all be about me, I recognized that I had community responsibilities. That was a leap for me. Instead of thinking only of my own needs, I was stretching out into a wider world view. I couldn’t just stay a kid, clutching my stuffed toy. I was part of a bigger picture and I needed to act accordingly. I was moving into a place I still occupy-it’s not just about me and I don’t think it should be. A new expectation for myself.

Michael had his goofy Irish setter, Harpo, but I couldn’t stay dog-less. We saw an ad for border collie pups at a farm outside of town. We drove out and were shown into a big barn that was swarming with adorable fur-balls. I sat down while they climbed in and out of my lap, romping, tumbling and sniffing. In the end, I chose the one who stayed the whole time. Loyalty, so high on my list of priorities was written all over this little one. I named her Ribeye after a debacle  with steaks that I wanted to remember forever. When we drove home, she vomited in my lap. To this day, I say you never know what true love is until you’ve gotten personal with someone else’s vomit. And so began 15 years with the smartest dog I ever owned. 

 

 

Ribeye lived for 15 years. As my life transitioned from Michael’s girlfriend to his wife, from random short-term jobs to the one that lasted the bulk of my adult life and finally into motherhood, she was part of our daily world. And her sensitive, responsive behavior changed the tenor of our household. She was so psychologically tuned in to us that she shook when we argued. Her distress made us modify our behavior. She was an animal who parked herself in front of you and made deliberate eye contact. Unwittingly, we were being trained for parenthood. We had to think about her needs. We recognized that she needed gentle treatment. And as we adapted to her, her own behavior  was extraordinary. She could walk beside us in downtown Chicago without a leash. She exhibited anticipatory behavior, watching us for subtle messages that conveyed what we needed from her. I honestly believe that caring for her made me an aware parent. Michael’s Irish setter who also lived to be 15, died a year before her. For a time, we remained a one dog, one child family. When I was 8 months pregnant with my son, Michael appeared one afternoon with a surprise, an eight week old springer spaniel puppy he’d named Manfred. Adorable, wild and crazy. Definitely not an intellectual dog.2DFE93E2-9DCD-44D9-A4D3-A931582FACC3 His presence added to the general chaos of a new baby, the adjustments of our older child to her sibling and Ribeye having to handle a lively interloper. It was a lot. I was now in my 30’s which I felt was truly the beginning of my adulthood. There were many demands on my time between family, work and home. I wanted to be the best I could at all those things. As the kids scrambled through the house and Michael and I juggled our multiple roles, Ribeye advanced into old age. I saw her become painfully arthritic and realized that it was my responsibility to determine whether she was having a quality life. This was a truly grownup obligation whuch required an emotional stretch. I remember weighing the moral choices of letting her decline further or making the call to euthanize her. I wound up choosing the latter. That day was a watershed event, a true passage for me. I didn’t handle it well. And I was permanently changed by it. My priorities were shifting. My desires were no longer first. I learned what it meant to evaluate intellectually and to manage my emotions. That time was the groundwork for my future. A scant year later, Manfred died at only 3, a victim of a congenital brain lesion. Losing three dogs in three years was astonishingly painful. We decided to take a break for awhile. Our daughter had a parakeet and there were guinea pigs and aquariums. Months passed. I felt the weight of maturity. But the absence of dog sounds were loud in my head. We thought about getting a cat although I never was a feline fan.   When my son was under a year old,I made a secret trip to the humane society, just to look around. Back in those days, there was a puppy room, which beckoned me despite Michael’s insistence that we continue the dog drought. When I was drawn in, despite a feeble attempt at resistance, there she was. Another collie puppy with alarmingly large paws. And I jumped immediately and went home to face the wrath of my husband who felt victimized by me making a choice alone. Sydney Rose.

 

 

She was our real family dog. My son grew up with her from babyhood into his teens. She was the pet who did it all for everyone. She played ball, went for walks and went to work with Michael occasionally. She snuggled with everyone and was smart, calm and sweet. Another dog who could sit leashless without concerns. For me, there was no “mine” with this animal. She was ours. I wasn’t needy with her. Those days were over. I was a responsible adult with dependents who required that I look at their concerns before my own. I loved her but I’d developed realism that was lasting. We enjoyed great years with her. But when her decline began, I was aware earlier and emotionally stronger. I took her to the vet’s office alone and held her in my arms, speaking quietly and soothingly as she left the world. I had taken another leap in my personal growth and my expectations for my behavior. With Ribeye, 15 years earlier, my vet said she’d be better off without my frantic hysteria. Not any more. I’d figured out how to live better, wiser and tougher.

We were again without a hairy beast. One Sunday morning I was skimming the pet section of the newspaper when I saw an ad for reasonably priced collie pups in a nearby town. Michael and my son were both doing schoolwork when I meandered into the study and mentioned that there might be an interesting pet prospect just 20 minutes away. I suggested we go have a look. I can still see the sardonic expression on Michael’s face as he said, “Right, we’ll go have a look.” When we pulled up to the address in the small town I saw a majestic collie sitting regally on a concrete stoop. This dog looked like the ones I’d read about as a young girl when immersed in the writing of Albert Payson Terhune. Lad: A Dog. The people opened their front door and a frantic looking female surrounded by her litter came running outside, looking desperate. I was immediately repelled because I knew we were at a puppy mill, but I couldn’t take my eyes off the gorgeous little things. Because I was a mom, I let my kid pick this animal. I wanted a female but he was stuck on a boy who never left his side. I remembered how I’d felt 30 years earlier when Ribeye stole my heart by being the loyal one of her litter. So suddenly we had Flash.

 

 

I was just past 50 when we got him. My daughter was away at college, my son was leading a busy high school life and Michael was preparing to start his new career as a high school teacher. Someone told me that in your life, a particular pet can be whats’s called your heart dog. I never heard of it before but I believe that’s what he was for me. My kids were past their most dependent years. Michael and I were in a stable strong relationship. I was increasingly unencumbered by caring much about how I was perceived by the world. I was ready to have this loving, intelligent companion who spent a lot of time with me. He was really loud and idiosyncratic. He needed daily walks and preferred to have his bowel movements anywhere but in our large fenced yard. Whatever he wanted was fine with me. Every morning I was as regular as any mail delivery person could ever be. I went out in all weather and felt like I was beautifying the neighborhood as people slowed their cars to call out what a beautiful animal he was. Those times together were joyous. I felt I was right where I was supposed to be.  I’d fully arrived in my life and was brimming with confidence and certainty. I loved my life and was smitten with this animal who embodied the liberation I felt. When he’d tangle himself around a tree, he’d look at his leash and retrace his steps and move on. I was as proud of him as I was of my own kids. When I think of the preposterous nicknames I called him, I can scarcely believe my own absurdity. For ten years, he lit my world. Then life changed.

My elderly mother needed help and moved into our home. I retired and started caring for my grandson full time. And then Michael got sick. Eventually, Flash’s loud barking became the soundtrack to my difficult days. He drove me crazy. I didn’t have enough of myself to go around. In 2015, my brother died in April. Michael was terribly ill and beginning an experimental treatment, barely hanging onto life. Then my mother fell, broke her hip and declined rapidly. She died on July 25th. I’d realized Flash had a slight cough and 4 days after my mom’s funeral. I took him to the vet and asked her to start testing. I didn’t want to leave without a diagnosis. All it took was blood work and a chest x-ray. His lungs were full of cancer. I held him in my arms and he was gone within a minute of being administered the euthanasia drug. An era of my life ended with him. So many people had disappeared from my life. When Flash died, I realized that the losses I’d experienced had changed the way I felt about animals. I was beaten down.  I didn’t expect to recover those feelings.

Surprisingly, Michael got well for awhile and in 2016, we decided to try for an animal again in this window of opportunity. After a disastrous adoption of a puppy who turned out to be congenitally ill, we wound up with Rosie, a black cocker spaniel. Michael had grown up with one which he remembered lovingly. We were told that Rosie was 5 by the humane society but she was actually 11. Michael loved her. I was indifferent to anything but what he wanted. Less than a year later, Michael died. Rosie was gone a scant month later after suffering from lung problems.

 

 

I was emptied out. But the silence of our big house felt too lonely. I started hunting for a small, manageable companion in a shelter. I knew I needed some life here, although I still felt and feel that the time of deep love for animals has altered. I can give  kindness and compassion but I don’t expect to experience the passion I felt for my furry friends from the past. This  expectation is consistent with the one that makes me feel like I don’t expect to love a man in a romantic way again. People tell me it’s too soon to know that but I don’t believe them. I think I know what zeniths I’ve reached in most parts of my life. So now I live with Violet, my 9 year old rescued showgirl who has secrets of a tough life I’ll never know. After a few months of hard work we’ve settled into a comfortable coexistence, two older ladies who’ve been knocked around by life and are satisfied with silence and peace.

 

 

Still the sweet collie breed, though. So some expectations remain the same.

I Don’t Understand

C181EC38-5127-4EB0-A331-281FBF237A8BI was reading about Stephen Hawking in the aftermath of his death. By all accounts, the genius of our time. And he said some pretty interesting things. He was an atheist. He believed in multiple parallel universes. He said that the greatest enemy of knowledge is not ignorance, it is the illusion of knowledge. After thinking about all of his theories which are so outside the box and  the definitions of “normal,” I realize more and more that I don’t understand anything.

2C615950-F1C0-423B-9134-0E769CFCF9B3As I moved away from Hawking, I stumbled across an article about some studies being done by a British psychiatrist, psychotherapist and research fellow which posits that human brains are connected by an “interbrain” which is quietly collecting information that ultimately accounts for “sixth sense,” deja vu feelings and those “I was just thinking about you” moments that we all have at one time or another. Maybe that accounts for some of the constant traffic I feel in my mind.

4667923B-F65C-4340-B2AE-2B49BBCFE075Then I read about spiritual vortexes which are part of New Age concepts. They liken certain geographical locations with high energy centers comparable to a vortex like a physical whirlpool. Except that when people are in those places, the energy from them has a powerful effect on creating internal peace and harmony while realigning spiritual forces that feel chaotic and disintegrated. I went to Sedona last year, the embodiment of that type of place, and though I can’t speak to the efficacy of these forces, I can say that the majesty and beauty there do impart perspective and deep thought when trying to figure out your place in the world.

There are lots of thinkers and dreamers trying to make sense of our complicated universe. Maybe one day the technology will exist that can explain or measure what is now inexplicable. The stuff that confuses us about what’s real or imagined. What are dreams and what are not? What feels unsettling and yet somehow comforting? What is possible and what is fantasy?

So what does any of this have to do with me?

5FBD80A9-0D9B-4AA4-B960-062E9B70644AMy beautiful azalea hasn’t bloomed yet this spring. The weather has been spectacularly unpredictable. Two days ago, five inches of snow fell, covering all my emerging flowers. I have lots of greenery but no blooms. A series of unexpected family events caused me to cancel a trip to Florida twice. Apparently toes in the ocean are not my destiny at this time. My forward trajectory to the one year anniversary of Michael’s death took a few side trips. But now I find myself staring down at the month of May which is heavily loaded with my “firsts,” those days which will be the ones without my partner of 45 years. Plus other May days which are emotionally loaded.BA20BC12-84CC-4698-862F-6BA39E89AE46May 1st is my wedding anniversary. Last year was our 6th last anniversary. Since 2012, we’d approached each one as if it was the last. And finally the last one came. A more difficult day than I could have imagined because Michael had a mini-stroke that day and for a brief time didn’t know my name. That was hard to manage. Then mother’s day arrives, followed quickly by Fern’s birthday which always leaves me feeling bereft, even after almost 30 years since her death. We were supposed to be old ladies together, rocking on a porch somewhere, singing Beatles songs and reminiscing about seeing them live when we were thirteen. But alas. 14801FD6-F6E7-4E39-B03B-10DAA2F4C705My birthday comes ten days after Fern’s and then in four more days, the first anniversary of Michael’s death. His early June birthday and father’s day top off the emotional minefield of my upcoming calendar.  

I’ve been working really hard on myself this past year. I’ve read many books about cancer, grief and recovery. I’ve been to therapy and support groups. I had what was seemingly a big closure event celebrating Michael’s life. EDCD392D-F52F-4446-9971-74991CB664B6That magic one year anniversary that is talked about in death and grief literature is almost upon me. And the thing is, I don’t feel much different than I did right after Michael died. I still feel married. I feel his presence around me every day.

I’m very busy. I’ve taken classes, gone on trips, made new friends and kept old ones. I swim frequently every week. I’m planning my 50th high school reunion with former classmates. I’m writing every day, either in a journal, in transcribing Michael’s many notes and most importantly, working on the book which I hope will benefit others who wind up having to navigate cancer and our impossible health care system. And to top it off,  I’m still writing letters to Michael which are like the running conversations we had about life, family, politics. He doesn’t respond but I feel better after unloading all my thoughts.75D11CE1-A19B-44F7-A226-853A56170089He is still with me. Sometimes, on a difficult day when I feel like I’m sinking, I get this astonishing sense of inhaling his presence and being lifted from a downward spiral. I feel buoyed and my confidence reasserts itself. The feeling is overwhelming and reminds me of the relief I’d feel after a bad day when I’d come home and be with him and share my experiences in safety and comfort. I have transformative dreams where his touch or his words waken me and I am thrilled with what’s happened and feel better for days. I love being in our home and especially in my bedroom at night. I’ve never experienced the urge to leave this place and be somewhere which isn’t loaded with memories. I’m not lonely for anyone but Michael. I’m not seeking a companion to fill his space. But for his absence, my life feels as rich and full as it always did. And with these mysterious and powerful connections to him, I am left wondering. How much microbial and genetic information did we exchange through our 45 years together? What parts of me became so physically altered that he is still truly part of me? What do I conjure subconsciously and what is left of his energy that stays in my space? Is he in a parallel universe that brushes up against mine intermittently? Are the wavelengths of what we shared still reverberating all around me? Am I a spiritual vortex that exerts energy which draws people or their vestiges into my swirling center? Question after question after question.BCF418C4-13F9-40B3-9DB7-047F2F64C98C

I still sleep on my side of the bed. The soft duck that Michael shared with my grandson is  ensconced there. When Michael got his dreadful prognosis of 2-3 months to live in November of 2013, I bought two big body pillows to stuff into what would be his empty spot. I use them but not as much as I thought I would. I read at night and listen to music before I sleep. Sometimes I meditate. I love to look at the photos of Michael which smile at me near my bed. Right before I go to sleep I send him a mental message asking him to drop by for a short visit. Sometimes it happens and mostly it doesn’t. 52A158F9-869A-48C3-B37C-3ED60D2998AEI feel comfortable in this process I’m following. I feel real to myself. I know I’m still directed to the world I inhabit and am engaged in life like I’ve always been. But exploring these new interior places in my own way and trying to figure things out suits me. My greatest pleasure is my certainty in myself. Not caring how I’m perceived by others is truly liberating. I only have to answer to myself and the principles I adhere to in my personal journey of what I hope is honesty and integrity. And I honor the life I built with Michael and my family. That journey continues. But I truly don’t understand so many things that I wish would be factual and concrete. My son-in-law says the technology isn’t here for what I want to know. So I’m just accepting the way it’s going for me and I won’t be intimidated by expectations of any sort. I don’t understand a lot. That is certain.  But right now, nobody else does either. We conjecture away and try to find a place to just be our own true selves. Our places are not all the same. That’s where I am as my first year as an unexpected widow is coming to a close. I’ll cry a lot in the coming weeks. But I’ll still be questioning and wondering and living. And Michael will still be here with me. Although I don’t know how that’s happened. C5C7CDCE-97D0-49CF-BC0D-BE2A772F3F34

My American Journey

Student Gun Protests, Washington, USA - 24 Mar 2018Today, I obsessively watched every minute of the March For Our Lives television coverage. I cried while I listened to the brave speeches of young children who bore witness to what had happened to their classmates and their schools. I watched John Lewis march with young people in Atlanta and remembered his face as he bled for Selma. I realized that my American life as I chose to live it was flashing through my memory, decade by decade. When the DC coverage ended, I joined my children and grandchildren braving the blustery wintry elements at our local march. I wished my husband was alive to share in the experience with us. I spent most of the day mulling over how I got to this place. 8D0EE441-7987-4D61-9E47-118B3287898AWhen I was a little kid, my school had air raid drills. We all lined up in the hallways, sat down, bent in half and put our hands over heads. Sirens wailed and after a period of time, the practice ended and we went back into class. I remember thinking that I was pretty certain that my arms would offer little protection if an atomic bomb landed on top of me. I never forgot feeling threatened from that vulnerable age of six and I suspect that most of my peers haven’t forgotten either.6315DA5A-6A71-4E5B-B30C-2D886FF2C75A

In the early 60’s, I felt tremendous fear during the Cuban missile crisis. We had a black and white television set which was fairly small and sat on a folding chair. My dad was usually parked in front of it and I liked to stand behind him and lean on his shoulders, asking questions and trying to understand what was happening in the world. When Kennedy addressed the country, I could feel the tension in my father’s body and I asked him, “Dad, are we going to have a war?” Imagine the terror of an eleven year old hearing the response, “I don’t know,” from the person whose job is to protect you from harm. Earth shattering. I never forgot that day, either  And then, slightly more than a year later, Kennedy was dead and it seemed that the whole world was falling to pieces. We watched television from Friday through Sunday when I saw the shooting of Lee Harvey Oswald as it happened on live tv. I had an overarching sense of terror and insecurity. I hated those feelings. I wanted to do something, to give myself some tools that would create a sense of self empowerment in what felt like a wobbly, unstable world. 03CBA8BF-540F-49B7-A42E-60921D84B071I became a news addict in my early teens. I’m not sure if I’d heard the expression that knowledge is power but I was relentless in gobbling up information. I watched Walter Cronkite and Eric Sevareid who emitted intelligence and calm to me. I read the now defunct Chicago Daily News and the Chicago Sun Times. I don’t think my parents ever brought a Tribune into our home. Too conservative. 

 

The Civil Rights movement was unfolding in front of me. My racially mixed high school stimulated conversation and conflict. The Blackstone Rangers, a local gang, were making inroads into our neighborhood. Courthouse DemonstrationAnd there was Vietnam. The draft. Finally it was 1968, my senior year of high school. King was assassinated and then, Bobby Kennedy. I was seventeen years old and my country was on fire. Young people rose up. At the Democratic convention that summer, the downtown street corners near my job were patrolled by police in riot gear. I was wondering if I could love my country through the madness of events swirling around me. Everything was so wrong. Violence was everywhere and people in power were sending my friends away to fight in a war that made no sense. After living through that wild Chicago summer, I started college in the fall. My brain hurt from thinking so hard all the time. I separated myself from my high school life and moved to the left politically. I joined with many others to actually do something to try changing the direction of current events. School wasn’t as interesting the student movement. I was all in.9FFCEAC2-E5CB-4D92-9362-8DB399E8DE3FI spent the bulk of my college years participating in demonstrations, reading and educating myself in more depthful ways than what I’d experienced in high school. I found my niche with fellow students who saw injustices and were bent on fixing them. I worked in a bookstore that sold books that exposed the seamy underside of our government. I went to Washington, D.C. to participate in anti-war protests. I was at the one in the photo below at which over 10,000 people were arrested and held in RFK stadium. I escaped there but the following week, I was arrested in my own student union during a sit-in at a Marine recruiting station. I faced disciplinary action by the university. We had a few moments to defend ourselves and my dad wrote a letter to present on my behalf, thanking me for opening his eyes to the fact that our government was spying on its own citizens and was corrupt. My charges were eventually dropped. But I actually had an FBI file. When my husband and I applied to see our files under the Freedom of Information Act, we received heavily redacted documents which led us to wonder who among our friends were actually spies. Truly unsettling. Anti War Protest 1967For me, those formative years permanently altered the course of my thinking and my life. The movements that I poured my energy toward are still unfinished, except for Vietnam, which after long years, finally ended. That is, unless you count all those soldiers permanently mourned and the ones who survived, bearing the weight of their service in what became such an unpopular war.

The civil rights’ and women’s movement have made strides but there is still a long way to go. Now we have #metoo and Time’s Up. Not to mention the travails of the LGBTQ movement. For me these are part of a long continuum that require endless commitment.  My mind and heart are in the same places they were 50 years ago. Some days I feel exhausted by the repetitions of history. Now there is another youth movement rising, the one I saw today, with the horrendous burden of trying to save their own lives at home, in their schools and in their streets. I feel solidarity with them and want to show my support for what will invariably be a long and protracted struggle with power deeply entrenched in the halls of our government. I don’t have the same physical strength I had when I was young but my mental and emotional strength is alive and vibrant. I want to share it with those people that I saw today and help them in the days ahead. I’m worn by the seemingly endless battles. But as the saying goes, dare to struggle, dare to win. There will always be wrongs to right. My American journey continues. I continue.

 

My American Journey

Student Gun Protests, Washington, USA - 24 Mar 2018Today, I obsessively watched every minute of the March For Our Lives television coverage. I cried while I listened to the brave speeches of young children who bore witness to what had happened to their classmates and their schools. I watched John Lewis march with young people in Atlanta and remembered his face as he bled for Selma. I realized that my American life as I chose to live it was flashing through my memory, decade by decade. When the DC coverage ended, I joined my children and grandchildren braving the blustery wintry elements at our local march. I wished my husband was alive to share in the experience with us. I spent most of the day mulling over how I got to this place. 8D0EE441-7987-4D61-9E47-118B3287898AWhen I was a little kid, my school had air raid drills. We all lined up in the hallways, sat down, bent in half and put our hands over heads. Sirens wailed and after a period of time, the practice ended and we went back into class. I remember thinking that I was pretty certain that my arms would offer little protection if an atomic bomb landed on top of me. I never forgot feeling threatened from that vulnerable age of six and I suspect that most of my peers haven’t forgotten either.6315DA5A-6A71-4E5B-B30C-2D886FF2C75A

In the early 60’s, I felt tremendous fear during the Cuban missile crisis. We had a black and white television set which was fairly small and sat on a folding chair. My dad was usually parked in front of it and I liked to stand behind him and lean on his shoulders, asking questions and trying to understand what was happening in the world. When Kennedy addressed the country, I could feel the tension in my father’s body and I asked him, “Dad, are we going to have a war?” Imagine the terror of an eleven year old hearing the response, “I don’t know,” from the person whose job is to protect you from harm. Earth shattering. I never forgot that day, either  And then, slightly more than a year later, Kennedy was dead and it seemed that the whole world was falling to pieces. We watched television from Friday through Sunday when I saw the shooting of Lee Harvey Oswald as it happened on live tv. I had an overarching sense of terror and insecurity. I hated those feelings. I wanted to do something, to give myself some tools that would create a sense of self empowerment in what felt like a wobbly, unstable world. 03CBA8BF-540F-49B7-A42E-60921D84B071I became a news addict in my early teens. I’m not sure if I’d heard the expression that knowledge is power but I was relentless in gobbling up information. I watched Walter Cronkite and Eric Sevareid who emitted intelligence and calm to me. I read the now defunct Chicago Daily News and the Chicago Sun Times. I don’t think my parents ever brought a Tribune into our home. Too conservative. 

The Civil Rights movement was unfolding in front of me. My racially mixed high school stimulated conversation and conflict. The Blackstone Rangers, a local gang, were making inroads into our neighborhood. Courthouse DemonstrationAnd there was Vietnam. The draft. Finally it was 1968, my senior year of high school. King was assassinated and then, Bobby Kennedy. I was seventeen years old and my country was on fire. Young people rose up. At the Democratic convention that summer, the downtown street corners near my job were patrolled by police in riot gear. I was wondering if I could love my country through the madness of events swirling around me. Everything was so wrong. Violence was everywhere and people in power were sending my friends away to fight in a war that made no sense. After living through that wild Chicago summer, I started college in the fall. My brain hurt from thinking so hard all the time. I separated myself from my high school life and moved to the left politically. I joined with many others to actually do something to try changing the direction of current events. School wasn’t as interesting the student movement. I was all in.9FFCEAC2-E5CB-4D92-9362-8DB399E8DE3FI spent the bulk of my college years participating in demonstrations, reading and educating myself in more depthful ways than what I’d experienced in high school. I found my niche with fellow students who saw injustices and were bent on fixing them. I worked in a bookstore that sold books that exposed the seamy underside of our government. I went to Washington, D.C. to participate in anti-war protests. I was at the one in the photo below at which over 10,000 people were arrested and held in RFK stadium. I escaped there but the following week, I was arrested in my own student union during a sit-in at a Marine recruiting station. I faced disciplinary action by the university. We had a few moments to defend ourselves and my dad wrote a letter to present on my behalf, thanking me for opening his eyes to the fact that our government was spying on its own citizens and was corrupt. My charges were eventually dropped. But I actually had an FBI file. When my husband and I applied to see our files under the Freedom of Information Act, we received heavily redacted documents which led us to wonder who among our friends were actually spies. Truly unsettling. Anti War Protest 1967For me, those formative years permanently altered the course of my thinking and my life. The movements that I poured my energy toward are still unfinished, except for Vietnam, which after long years, finally ended. That is, unless you count all those soldiers permanently mourned and the ones who survived, bearing the weight of their service in what became such an unpopular war.

The civil rights’ and women’s movement have made strides but there is still a long way to go. Now we have #metoo and Time’s Up. Not to mention the travails of the LGBTQ movement. For me these are part of a long continuum that require endless commitment.  My mind and heart are in the same places they were 50 years ago. Some days I feel exhausted by the repetitions of history. Now there is another youth movement rising, the one I saw today, with the horrendous burden of trying to save their own lives at home, in their schools and in their streets. I feel solidarity with them and want to show my support for what will invariably be a long and protracted struggle with power deeply entrenched in the halls of our government. I don’t have the same physical strength I had when I was young but my mental and emotional strength is alive and vibrant. I want to share it with those people that I saw today and help them in the days ahead. I’m worn by the seemingly endless battles. But as the saying goes, dare to struggle, dare to win. There will always be wrongs to right. My American journey continues. I continue.