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

 

 

 

 

Birthday Boy

789C3D26-90D9-4CB0-8E79-6B0A6A1B046CWhen you stop to think about it, birthday celebrations are a bit odd. Although somewhere deep in our brains, the passage from our mothers into the outside world is probably recorded, we don’t have easy access to that memorable entrance. In fact, most of us remember little from the first few years of life. And yet it seems to me that our earliest years are deeply significant, combining whatever is hardwired into our DNA, with the effects of how we are treated by our parents or caregivers. My own children, now in their thirties, routinely exhibit behaviors that are virtually the same as the ones from their babyhood. We are always growing, even during infancy, and by the time we are about five, certain basic feelings are locked into us, whether we can recall how they got there or not.41EEC608-4465-4BE2-9EBC-C0DA6CA54AFE

Today is Michael’s birthday, the second one since his death. This day finishes off the long list of anniversaries that punctuated the month of May. Father’s Day will be more challenging for my kids than for me. But his birthdate resonates with me. As I remember the many birthdays we spent together, I find myself thinking more about the little boy who was formed before I showed up. And that little boy was always present throughout our adult life, on birthdays and all other days as we maneuvered our way through life and its multitude of challenges. 53EF1919-18AB-4954-916D-687FE3BE18AA

Michael’s parents were difficult people, hardly the types that were suited for nurturing children. They give credence to the concept of licensing couples before they reproduce. So much heartache could be avoided that way. But that isn’t likely to materialize any time soon. And for my sweet guy, he seemed like an alien, a mutant creature in the cold, insensitive environment that was his home life. 

09DC7427-F1D6-44CF-BF67-F8E600A7F9B2Michael had an older sister. Rather than beloved children I felt they were essentially perceived as two dimensional objects. I think their parents didn’t spend much time learning to know or help their kids. Rather, they hoped their children would grow up to reflect their own very clear values and choices, to become mini-versions of themselves. Their parental love was narcissistic. And putting a child’s needs ahead of their own was never part of their family code. F3D09B9A-FE98-4E07-957B-899DFABCC585

Michael’s earliest memory was from the vantage point of a 2 and a  half year old with pneumonia who’d been admitted to the hospital. His parents left him there by himself. He woke in the night and began wandering around, confused. The staff wound up putting him in restraints which he remembered for the rest of his life. Another one of his vivid memories was being a 5 year old child in Cleveland, who needed speech therapy to correct a lisp. He took the trolley by himself to his lessons with a note pinned to his coat with his personal information in case he got lost. I always found those two stories incomprehensible. 161F508F-B82C-49F2-A251-9317CDCCA635

Michael told me that he’d actually escaped the worst of his parents’ attentions which were initially aimed at his sister in a full court press attempt to turn her into a stylish debutante. She had the wrong stuff. Michael did too. Both of them recognized from their earliest years that they were lacking whatever it was their parents wanted to see in them. And whatever was intrinsic to them didn’t resonate with their parents. Their most essential selves were unseen, not acknowledged, unvalued. That uncertain boy, lacking in confidence and self-deprecating to an absurd degree, came to me packaged as a strong, daring, talented man who seemed capable of anything. And he was sweet, perceptive and gentle. What could possibly go wrong? As we learned to know each other, I could feel that boyish uncertainty constantly gnawing at him. While I pushed forward, certain there was no situation I couldn’t think my way through, Michael hung back, passive and nervous about putting himself out there, about taking emotional risks or intellectual challenges. He’d jump from a cliff, ride a motorcycle without a helmet and hop rollercoasters until his head spun. But he moved slowly and cautiously in the things that mattered. I was stamping my feet at the finish line, waiting for him to catch up. Our differences in pace were memorable, me trying to yank him forward and him trying to hold his own space. Life was interesting indeed. 515AC850-E96B-4803-AB75-E374A10C62A5

I tried to love him out of every insecurity that had taken root in him from the beginning of his life. He was intermittently grateful and annoyed. And I, despite being frequently frustrated, was madly in love with this sweet gifted man who’d been unfairly treated by those dreadful parents. After a long run of twenty years, I divested myself of my relationship with them. I couldn’t stand who they were or what they’d done. 65B0FC86-A8FE-417F-955E-2FD1A4ED68C0

Michael and I moved forward together. In time, his confidence grew as he began to build first small successes and eventually the bigger ones that made him a fabulous public servant and a gifted teacher. And more important, he was a matchless husband and a devoted loving father.843B9E6B-5C04-4EB3-8EA9-588483A64FB0

But periodically, the childhood demons emerged and he felt less than, not good enough. Over and over, throughout our years together, he’d ask, why are you even with me? It drove me crazy.E54D2049-1E7F-406A-9EDB-C4D4139BD2B2

In 2012 we began the long road of his cancer experience. Many of the trivialities we indulged in were shunted off to the side as we faced months of tough treatment and uncertainty. Our feelings for each other deepened in intensity as we reveled in every moment we shared. Still, he would ask me why I bothered with him, when he could be so difficult. In 2014, he’d been through 2 surgeries, 30 radiation treatments and 18 rounds of a powerful chemo cocktail. His birthday that year had us hanging on the edge of an uncertain future. I was casting about for an appropriate gift and fretting over finding something meaningful, something significant. EA2FBA6D-F8DB-4F96-87AE-FC5C8C3F889F

In the end, I wrote him what I hoped would be the penultimate answer to his endless insecure questioning of my loyalty to him. Here it is, as true for me today as it was when I wrote it 4 years ago, as true as it was for the many years before I wrote it and as true as it will be forever. Happy birthday, my darling boy, wherever your microbes or particles may float through the universe. Parts of you will always be with me.

Why?

Because you never tried to change me.

Because you were never threatened by my intelligence.

Because you always made me feel like I could do anything.

Because you forced me to do things I didn’t think I could do.

Because you stood up for me.

Because you always played on my team.

Because you made me feel beautiful no matter what.

Because you are a gorgeous, sexy beast.

Because you listened.

Because you heard when I wasn’t talking.

Because you are my best friend.

Because you make me feel safe.

Because you’re funny.

Because you’re smart.

Because we made unbelievable children together.

Because you stayed hot for me our entire life together.

Because you tried to be a hero.

Because you know what’s fair and right.  

Because you’d go to the wall for me.

Because we understand the world in the same way.

Because you love books and movies.

Because you’re a sap.

Because you make me crazy.

Because you’re my home.

Because you’re my best fit.

Because you hold my heart.

Because you are my always and forever.

That’s why.

6/5/14 – With all my love, ReneeEB387C8E-421A-48EE-80F3-5381B1D9B63E

 

 

 

Cancer’s Final Invoice

7087D9AD-9A3D-4159-9E07-F5D9E0FC3B04

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 with 6 months, 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. 383C8BD5-7519-43B3-9909-11B8EAB09702

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.

The Lusty Month of May

 

4845FCDF-1600-4878-8952-218A421128A4When I was in my late teens, I went to see the film Camelot which was based on a stage musical. The movie premiered in 1967. The title of this post is a song from that film, composed by Lerner and Loewe. The story was emotionally stirring and made its way into our cultural lore as emblematic of life during the Kennedy administration.
Of course we know that the romance and the tragedy skimmed the surface of politics, life and love. But I sobbed my way through it anyway, leaving intellect aside to just feel all the feels. I remember.
And what did May really mean to me? As a youngster it meant a surprise May basket, stuffed with candy, and a dance around the maypole at school, entwining pastel crepe paper streamers as we skipped under each other to avoid tangling.
I have a May birthday. So did my childhood friend Fern who was born 10 days before me. But even though we were bonded in time, she was a Taurus and I was a Gemini which somehow meant we could account for our very glaring differences.

C11321A6-6F69-4427-907D-FFC82C0BE59EAnd May was also Mother’s Day month which back in my youth, meant waking before dawn and assembling a breakfast for my mom with my siblings. A breakfast which we usually picked at until there was virtually nothing left for her. She just wanted to sleep anyway.

MAYDAY-CST-050214-003.JPGWhen I got older, May 1st became the celebration of labor and a new bond that I felt out on the left wing with my political friends. I learned the words to the Internationale, although I’m not sure I recall all of them.

 

 

92E47B0A-1B90-4F92-B3ED-BF7F5BBE0E1CAnd then suddenly, I was in real love and after a four year testing period, Michael and I chose May 1st as our wedding date. The lusty month of May indeed. As we got ready to actually do it, we looked wonderingly over the balcony of our hotel in Chicago and watched the May Day parade roll down Wacker Drive, thinking how odd it was that we weren’t down there marching.

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Fern died 30 years ago and although I think of her regularly each year, her birthday is always a difficult time for me.

When Michael died last year on May 28th, four days after my birthday, I realized that the joy I always associated with the lusty month had now gone sour. Instead of celebrations, these dates which marked such significant events will at best be bittersweet. For now, as I face down my first wedding anniversary without Michael, soon to be followed by my first mother’s day without him and my mom long gone, I realize that those moments are just the beginning. Next will be Fern’s birthday, followed by my first birthday without Michael and then, the biggest one, the first anniversary of his death.
It feels like a lot to me. I know that maybe some day, the pain from all of these landmarks will lessen. I’ve had anticipatory grief, trying to prepare for May which is now finally upon me. I am flooded with memories of our wedding scrambled in with the final weeks of Michael’s life last year. There are too many stories to weave into a blog post.
I woke today and felt internally wobbly. I managed a few chores and went swimming, happy that my usual crew wasn’t at the pool because I wasn’t sure I could keep myself together. Then I went home and gardened for awhile, listening to music, crying and imposing a state of silence on myself. For this year, I need to go through these first few days and nights alone. And I settled on what I needed to say, to let free the memories seared into my mind and the thoughts I’ve been journaling as I’ve navigated this year.

8AB1F9C5-8C77-47C7-884E-39ACAA02ACE0
First, there are our wedding vows that we wrote so earnestly all those decades ago.
Me: I stumbled about in the labyrinth
Pained and troubled by a bleak confusion.
Imagine my joy when a light in a far corner was you.
Me: Michael, with you I will reach for an ever-growing integrity in living.
Michael: Renee with you I will strive for an equal sharing of love, responsibility and trust.
Me: With you I will share my thoughts and emotions in honesty.
Michael: Together we will work for individual growth and development that we may each find meaning in our lives.
Me: Together we will struggle to make beauty, dignity and mutual respect integral parts of our relationship.
Michael: Together we will search for a fulfillment of our ideals.
Michael: Through the darkness of my mind, I search for what I see is true.
I stood alone without belief-the only trust I know is you.

Not exactly standard fare, but reflective of who we were and how we tried to live.

3794115A-9A4E-4C5F-9247-E568A4B1C586And then there was this note I wrote to Michael in July, 1997 which I found when going through his papers after he died. Already 25 years into our relationship. It still moves me and was oddly prescient of how I still feel today.

In my head, I see your profile
Because I’m next to you, as usual.
Thinking of what we’ve done.
Births
Surgeries
Death
Lies
Fears
Insecurities
Joy
Companionship
Passion
Friendship
Tenderness
Excitement
Longing
Everything.
With more to come.
It sneaks up on you.
Year after year.
The great love of your life.
Your best friend.
The blurry lines between you and me and me and you.
I made the right choices. I did the best for me.
Right now, our children are coming home from a trip, haven’t seen them in six days or so.
Haven’t seen you in four hours.
I miss you more.
Will you be coming to sit on my bed in the middle of the night if you should die before me?
The way my mother says my father comes to hers?

I have no memory of writing that but here it is, in black and white before me.

Every year, Michael gave me roses on our anniversary. The tradition started with one for each year but after awhile, that got too expensive. He always wrote a little note on one of the cards that are lying around when you go to pick up flowers. I have all of them. In 2014, he had just finished 18 rounds of chemo before our anniversary. The card below came that year. And he certainly kept his word as he did impossible things to stay alive.A05D13AA-00CB-4E9A-A3B0-BAD2BB588D1A

This is what I wrote a few days ago, assessing where I am today, approaching this intense month.

Anniversary Love – For Michael

You are every note and every lyric.
You are every story and every poem.
You are light and midnight blue.
You are every petal and every stalk.
You are the field, the mountain, the glade, the ocean.
You are serenity and rage, peace and tumult.
You are constant and transient.
You are daunting strength and trembling weakness.
You are my comfort and my desolation.
You are satiety and starvation.
You are the beginning, the middle and the end.
You are the past, the present and the future.
How could both your presence and your absence blot out everything?

Have I left anything out?

The lusty month of May. I hope I have the strength for it.