I’m Taking My Spring

DD97C483-0AAD-4347-8A98-03C9E6E219DDYesterday the Mueller report dropped with completely unsatisfying results. Mueller started his probe before my husband died. For two years, it, and the national political nightmare, has been draped over my personal grief. When I heard the news I felt myself sinking. Next I found out that some medical test results I was expecting are lost in the morass of my clinic. After waiting for weeks, I get to wait again. That’s frustrating.1D4586C3-8B98-4395-856D-02694487F489

Then there is the steady streams of spam phone calls pouring into my supposedly opted-out telephone, day in, day out. I finally got a service to field them all. I get to listen to the recordings and decide if the caller should be permanently blocked. The most recent one was threatening lawsuits against me and my entire family about some mystery tax liabilities. Pity the people who get intimidated and respond to these predators.6F864EC7-AFF3-4DA4-B67F-34747658B5E9

This is modern life. Flooded with news, bureaucratic incompetence and trolls trying to score money from cowed innocents. Well. I’m not going to let any of this weighty, exhausting garbage steal my moments in the present. I’m getting my spring. I want it and I need it. So here goes.

 

At last, spring seems to be getting ready to settle in and send this relentless winter on its way. I’m aware that I choose to live in a place where four seasons are the natural cycle. I’ve always been a fan of two, fall and spring. Summer and winter, not so much. My thermostat runs hot, both physically and mentally. In summer, I’m in a constant battle with sweat. I’ve always found it embarrassing and uncomfortable. I can usually be seen with a visor to absorb the water pouring down my head and rolling into my eyes, and I usually have a towel slung over my shoulder. 291FF935-9011-4F1A-B780-804E18A3BE52

My arrogant blue blood mother-in-law would look down her nose at me as I mopped myself from head to toe and announce, “WE don’t sweat.” A swipe at my peasant heritage, I suppose. Winter presented more complex problems. I knew it was cold and dressed appropriately but would quickly get too warm and start unzipping and pulling off all the layers. My sister told me that her vision of me in winter was coat open, flapping in the wind, mittens off and socks rolled down in my boots. When I was a kid, I remember the joy of the first warmer temperatures of spring. The cool air still bit my skin, but I would be barelegged in my cotton dresses as I strolled to school, feeling free and unencumbered by the weight of winter’s demands.C3461A4E-652E-490D-B43B-EFEE497531CB

I always spent as much time as I could outside, playing in the streets and alleyways of Chicago until dusk came or my mother called out, whichever came first.  As time has gone by and my life has changed, the advent of spring means getting back into the garden, digging in the dirt. I guess that’s still a form of play for me. With the wild weather events of the past few years and my firm belief in the science of climate change, I worry for the future of this planet. I’m watching my garden for signals of change. Recent springs have been a mixed bag. A year ago today, I went with my family to a March for Our Lives demonstration. The weather was brutal.74E70A8F-222D-4CCE-99FB-73D78CDD9ED0

I’ve compared photos of my garden over the past several years. A bit of everything has been tossed at my space in terms of weather extremes. My snowy photos conceal perennials which were ready to pop, only to be submerged under inches of snow.

 

 

Then there are the ones in which everything seems perfect, the blooms popping up exactly when the packaging said they would. For those of us who plant on an optimistic timetable, hoping that new flowers will emerge just when the earlier ones are dying back, that cascade of color is the gardener’s victory.3B81381D-E3DA-40E6-8FEB-52D42DEB127A

Some people scoff at climate change theory because they think that as long as there is cold and hot we’re ok. But that’s not how it works. The intensity and frequency of the winter storms are the issue as will be the intensity of summer heat, dryness and/or rains. I’ve heard a lot of comments about hundred year storms. Except they’re coming regularly in each season. The hurricanes and cyclones in recent years have been increasing in frequency and intensity. Floods, fires and mudslides have been cataclysmic in many areas. There’s very little that I can do our there in the big world to contend with these issues. So I’m focusing on my small part of the world.

 

I’ve finally gotten outside long enough to check out my perennials. Some are emerging slowly and others seem to be following an average trajectory. For the past two months, I’ve been alarmed about a drop off of birds at my feeders. That seemed directly related to the polar vortex that stuck around in the Midwest for what felt like eternity. But of course, the vortex, like, everything else, passed. The birds are back in force. Today when I came home from running errands there were multiple species enjoying a midday meal.

 

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I think that for what’s left in my lifetime, the “all things must pass” adage will be true. I hope for the sake of the ones who come after me that the planet is not beyond redemption and that brilliant, tactical scientists and their supporters will find ways of recovering what’s already been lost. If not recovery, then at least a new approach that will preserve the diversity of the natural world. For now, all I can do is enrich the space that I’m lucky enough to own.

I’m planting and feeding and creating habitat for as many creatures as I can entice into my yard. I want bees and butterflies and hummingbirds. I want my perennial milkweed to return this year so I can draw the many monarchs who visited last year. I want the other butterflies as well.

 

Actually I want as many birds as I can get. I want lots of insects. I know they’re vanishing at an incredible rate and that without them the underpinnings of the a healthy ecosystem are at risk. I have at least a dozen praying mantis egg sacs dangling from shrubs in my garden.

I hope what I’m doing will provide them the sustenance of the other “pest insects” they eat so they don’t turn to the pollinators I’m enticing. The balance is complex and delicate. So yes, I’m getting my spring. I’ve reminded myself that Michael would be so thrilled to have even one extra day. The last thing he’d want is for me to squander what’s good and within my control, for things that deplete me and about which I can do almost nothing but brood. If you’re looking for me, I’ll be out in my dirt.7B677A63-4537-4D33-86E4-BE0B45C599BB

The Absence of Those Kisses

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One of my favorite movies is Cinema Paradiso which recounts the story of a young boy growing up in a small village in Italy, a boy obsessed with watching films in the town theater. He develops a friendship with the theater projectionist whose job is not only to run the movies, but also to edit out any sexually suggestive scenes at the behest of the local priest. A growing up tale of love and friendship winds up with the boy moving away as he gets older, at the behest of the projectionist who loves him and wishes him a bigger life. The young man builds himself a career in filmmaking and is away for many years. He’s called back home to attend the funeral of his mentor and finds that the old man has left him a gift, a reel of film in which he’d spliced together all the beautiful kisses he’d cut away from years’ worth of movies. In effect, the reel itself is a kiss and embrace that arouses joy and elation tinged with sadness. The movie was released in 1988. The kisses reel, set to a poignant musical score, has stuck with me over time and I’ve watched it many times, although sparingly as it’s too painfully beautiful.52B38D0C-962E-472E-AA68-2527629E129E
During my grief processing that’s continued since Michael’s death, certain hard-to-manage realizations have popped up that cause serious internal wrangling. I think some adjustments are harder than others. One of the first and worst ones was realizing that I’d never have another new picture of him. As time has moved forward and the photos of daily life accrue, I am constantly reminded of the space that should be his, his arm slung over my shoulder as I snuggle my grandchildren, his face squeezed into photos of me and our kids.E9160C58-DE1C-498F-9FBE-46DD5C602734

How strange that it’s only recently, as I approach the two year anniversary of his death, that I realized that I’ve had my last romantic, sexy kiss. I can’t say exactly when it happened. I know it was during the last months of his life. As his cancer spread, we shared kisses and affection but there was a different feel to that time. I was too busy trying to keep him alive and safe to identify the last time we shared the kind of kiss that made us pull back from each other, feeling dizzy, somewhat dazed, looking into each other’s eyes and  marveling that after 45 years, we could still feel so weak-kneed with each other. Now I’m thinking about so many kisses, the kisses of a lifetime.

 

 

 

I don’t remember my first kiss. I think lots of people do, counting that moment as a transition from one part of life to another. I’m pretty sure I know when it happened. After graduating from eighth grade in Chicago, I went on a celebratory date with a boy who was my friend and another couple. I don’t remember which adults drove us down to the Loop where we had dinner and then went to see the film, The Unsinkable Molly Brown. The other girl on the double date, who is thankfully, still a part of my current life, thought we had dinner at a steakhouse. I thought we ate at Don Roth’s Blackhawk Restaurant. Neither one of us remembered which of the fancy Loop movie houses we attended. I do remember many of their names, The Wood, The Chicago, The Oriental, The Michael Todd. I have a vague recollection of a bit of handholding and a passing brush of the lips. But it wasn’t memorable enough to make find its place into the vault of moving pictures that I so easily access every day.4AA1479C-9931-4F09-9DAC-A0226EB9F9C5
Although I grew up with fairly radical thoughts and ideologies during the ‘60’s,  I was a personally conservative girl during the time of “free love.” Early on, I remember thinking that when I was an adult, I didn’t want to look back on my life and find a lot of cringeworthy moments that turned my stomach and made me ashamed. In high school, I was careful. Apart from an occasional crush, I only was interested in two boys.5EFE3EC6-C67A-40F0-B218-03B5F463EC5F
One was my real boyfriend for most of the time. He was sweet, comfortable and respectful. We were affectionate with each other and participated in the requisite “making out” but I know that he went behind my back to seek other pleasures with girls who were looser about their sex lives than me. I remember our times together but they were more like experimental feelings for me than ones that struck deep into my core.B4680788-F9E5-4705-BEC7-7DF009518B1E
The other boy who I was completely crazy about eventually wound up sharing a few stolen moments with me. Those kisses were awkward, romantic, teeth-knocking moments, fraught with tension but never leading anywhere beyond that. I remember the thrill of finally being close to him, but the sense of victory was my dominant feeling.  When I started college in 1968, I’d just turned seventeen and was still involved with the high school boy. I stayed loyal to him and we acted the roles of future partners but he was being a boy of his age and experimenting with others. Things ended after my freshman year and when I returned to school as a sophomore, I resolved to be ready for anything and to catch up with all this liberated sex stuff going on all around me. But the truth is, I was still hanging on to the vision of saving myself for something real, something that I wouldn’t regret.82188CD0-B2B0-43BB-834C-D0BBB5A6C1E4

I dated a bit but in November of 1969, I met Al, the guy who within four months, despite my best attempts at self-control, became the first person to light a deeper spark in me.  Now his kisses I remember. For the first time, I wanted more, to cross over into the most intimate of sexual exchanges.  I fell madly in love with him and thought I’d found the one, despite the fact that we argued constantly and rode the miserable rollercoaster of breaking up and getting back together over and over. He was too young and too scared to be in a committed relationship and rightly so. But I was so sure we belonged together. Eventually, in my junior year of college, at age nineteen, I became what I was pretty sure was the last virgin with radical politics to give in and finally have a significant sexual relationship. I don’t regret that. I thought we’d be together forever which was naive and painful. We hurt each other a lot and eventually, I was able to move on and start seeing other people. Still, I never regretted that my first love was someone who meant everything to me. As I tried to get past Al,  I met the person who as a kissing partner, was probably the best natural match of my life, Dennis the golden boy.

 

 

 

 

He was a gorgeous creature who for some reason, felt the same way about me as I felt about Al. And our physiology was a whole other thing. The fact is that mouths are kind of weird. They have unique shapes and lips have different widths and sometimes things don’t necessarily match up all that well. Dennis’s mouth and mine were the perfect match. We just fit perfectly. Kissing him was magical. I could’ve done it for hours and sometimes did.438181AE-C64F-44D1-992B-1AB24C932FDB
When I hear Carole King’s Tapestry. I am transported back to that sweet time. The problem was that I couldn’t get my emotions into the same place as the physical pleasure. Beyond the lovely kisses, I felt robotic. I really liked him a lot, even loved him, especially as a friend, but it just wasn’t the same passion I felt with Al. And so began a time with me going back and forth between them, driving myself crazy trying to figure out where everything was going and what I should be doing. At this point in time, I’d call those first world problems and even then, I was leading an activist life on campus and trying haphazardly to be somewhat of a college student. I can clearly see myself interacting with both of them, trying to juggle mismatched feelings and sneaking around between the two of them while trying to focus on anything besides emotions. I was in rough shape. Al broke my heart and Dennis almost mended it. One time while in Chicago, my mother helped me smuggle Dennis down the back steps while Al was coming up the front ones. A time of youthful madness.3F9EE780-FC29-438A-8CF2-06AA92DAE9F0
In the summer of 1971, I was living in my college town and working, heading toward my senior year. I was involved in the anti-war movement and had gotten myself arrested at a demonstration on campus. That arrest brought both disciplinary problems with the university in addition to civil charges, all of which were eventually dropped. I remember needing a dress for court. I bought a royal blue pullover jersey dress with a red cumberband waistline. Besides court, that dress served double duty for social events . In August, I attended a wedding that took place in big backyard at a sabbatical house that a friend was renting. I pulled out the blue dress and decided to try enjoying myself. I was in one of the breakup times with Al and was on my own, amongst friends and new acquaintances. I needed to pull out of the emotional quicksand and go forward.
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The wedding was a classic alternative, hippie event with the couples’ parents wearing decorated, woven muslin shirts and everyone, including the families, indulging in some sort of mind-altering alcohol or drug. I remember drifting along in a pleasant haze when I wound up lying in the backyard with my head resting on a log, gazing at the stars between an old friend of mine and his friend who turned out to be Michael.3F96BA6B-0A94-4112-9F4E-C2A65BB6C9A5
I’m still puzzling over what happened between us that first night we met. I wasn’t attracted to him in a sexual way because I was still all in with Al. But within a very brief time, whatever feelings were bouncing between the two of us were strong, positive and dominating the rest of that night. I went home to Chicago the day after that wedding to visit my parents. When I returned a few days later, the first thing I did was contact my friend to ask how I could find Michael. I called him and asked him to come visit me at my apartment. When he arrived we sat on the front porch and I told him that I’d never so instantly liked anyone before and that I wanted to be his friend. He shyly agreed. Within a few weeks he’d moved into an apartment down the block from mine. He had a girlfriend and I was still bouncing between Al and Dennis. But Michael and I spent long hours together, talking a lot, but often just lying quietly side by side, listening to music, and having the most powerful silent exchange of feelings that I’d ever felt. I started getting pretty confused after a few months of this startling but magical friendship.7A3126BE-2631-4DD8-83DC-43D8643209A7
I felt like me all the time. I think I was the most relaxed and liberated I’d ever been in my life. The world tumbled forward. I was planning a trip to Europe in January of 1972 and would soon be leaving for Chicago. Michael agreed to take care of my dog while I was abroad. In late December, we were washing dishes in his apartment after dinner, laughing and simply enjoying ourselves. I don’t recall what I said that prompted him to bend down to kiss my cheek. For some reason, I’d turned my head slightly and his mouth landed on the corner of mine. Trite and often used as it may be, the truth is I was electrified by that lopsided, friendly kiss, literally from the top of my head through my body’s core and down to my toes. I know I struggled to stay composed. I’d never felt anything like that before and it did not compute with all my other tangled emotions. The moment passed. In January, 1972 I went to Chicago to get ready for my trip.
Michael and I exchanged letters and one time before I left, he appeared at my parents’ apartment with my dog, Herbie, so I could see her one more time. I wasn’t returning home until April. The sweetness of that gesture wasn’t lost on me. On the  long drive to New York with my friends I thought long and hard about what was going on inside me. I was twenty years old. I’d been in an irrational emotional quagmire since getting involved with Al in 1969. I still loved him. But Michael and our magical connection was an unanticipated gift. I realized that the foundation we’d built was healthy love and I found it magnetic and impossible to discount. We made a stop in Philadelphia and I called him to share my feelings. His response was “far out.” And off I went. We’d never shared one kiss except for the accidental one at the kitchen sink.E9B47D49-4E36-426C-81F8-6A1516529B28
I wrote him every day from Europe and he wrote me too. We were both scared but we realized something special had happened to us. When I came back in April, I went back to campus with no concrete plan, still tied to Al but pretty certain that relationship was doomed. I saw him for a few days and confirmed that truth. Then I showed up on Michael’s doorstep with my suitcase. I told him I wanted to move in. He said that was fine and asked me where I would sleep. I told him I planned to sleep in his bed. And so it began.3D3DC2E4-AFB3-44B5-9376-01C9221F7EA0

We finally kissed each other and the rest as they say, is history. It took a little while to fit our mouths together as our shapes weren’t the perfect fit. But we made that happen and practiced for the rest of our lives.

 

 

 

There are many types of kisses. Kisses with kids and parents, kisses with grandchildren and grandparents, kisses between friends. For the most part, they are grazes of affection. And there are hugs to be shared. I don’t feel deprived of physical contact which can be such a lonely isolating feeling. In fact, I consciously make sure that I have human contact which was always such a central part of my world from that early age of twenty,  forward and through my adult life. But I feel so profoundly the absence of those kisses. The melting feeling. The joined feeling. I’m lucky to have had them. I’m also lucky to retrieve the sensations through the gift of my memory. But I wasn’t ready to be done with them. I’m hopeful that no one will tell me that I should “never say never.” I don’t want to replace the power of what existed between Michael and me with a replacement. The pain of what I miss is in its way as precious as those inexplicable volcanic rushes that passed between us. There cannot possibly be anything that rivals them. The absence of the kisses is mine forever. 468F8823-2DCA-4401-BFBC-E6AA9FD89E5B

 

 

 

Unforgettable – Part One

29B27F33-667B-4ABF-8BA5-17399FC03B38A little over two years ago, I was watching Michael changing in front of me. I knew he was really sick. But we were befuddled. He’d had a clean PET/CAT scan right before Thanksgiving so we were unaware of a covert, stealthy Merkel cell cancer recurrence that was traveling up his spine and crossing into his brain. Things moved fast. I’d noticed a few odd things in December, 2016. He had a rare episode of terrible vomiting after eating one of his favorite meals of mussels and scallops with linguini. There was a moment when I was making mashed potatoes in the dead of winter and he suggested that I bring in some chives from the garden to flavor them. What could he have been thinking? His behavior was riddled with irritability. He had loss of appetite. His circadian rhythms were off – he started going for walks at night instead of during the day.3B4393B2-C529-4891-ADF5-EF6C316E8D3B

He started slipping away. He was angry at my incessant nagging about his eating and drinking. I finally got him in to see our radiation oncologist who diagnosed the wasting condition, cachexia, common in heavily treated cancer patients.

30E831DC-ED23-4ED6-A7E9-D60D80618F46He prescribed medications for symptoms. But Michael wasn’t taking any treatments. By the time we got home that afternoon, I was calling back saying I disagreed with the diagnosis. We were sent on our way to oncology. The oncologist was very thorough, very cautious and very wrong. She ordered scans and blood tests which showed negative for disease. We were told Michael was cancer-free on Friday, January 27th, 2017 and he was given appetite stimulants. We crawled our way through the weekend. Monday was a difficult day. Michael wasn’t hungry and barely ate, consuming about 500 calories. I was following him through the house, trying everything to get him to eat. By evening we were on each other’s last nerve. He went upstairs early, feeling annoyed. I felt terrible. I went up to see him and apologized, explaining that I was just trying to help him maintain himself. I told him I loved him, kissed him goodnight and went back downstairs to watch the news, to distract myself from my growing terror. About half an hour later, Michael appeared and told me he felt confused. When I asked why, he asked me if I’d just left him. When I replied, of course not, he broke down and cried. We huddled together on the couch while I comforted him and got him to drink a bottle of Ensure.

845CAA5F-D1F1-46AF-9510-0E22EB4B96A7We decided to watch the news together, an activity which was familiar and usual. The focus that night was on the Muslim ban and the screen was full of demonstrators at airports across the country. Michael gazed at the television and asked what was happening. When I replied that what we were watching was a response to the Muslim ban, he asked, what’s a Muslim ban? This question from my current events and history obsessed husband? We went to sleep and when I woke early Tuesday morning, I used all my persuasive powers and leaned on Michael’s trust in me to convince him we had to go to the hospital to search for a real answer to his problems.58577600-3806-41C8-B057-61C8C8816D0A

On January 31, 2017, we headed to the ER in a desperate attempt to get a proper diagnosis. That day he had his first brain MRI. By late afternoon we were told he had central nervous system lymphoma which had infiltrated his brain meninges and was invisible on PET/CAT scans. This was another error. What was there was recurrence of the Merkel Cell cancer which kept popping up in him after 5 years of treatment. So few patients with metastatic Merkel Cell lived long enough to get that presentation so the radiologist couldn’t identify it. A hearing problem he’d complained about for weeks earlier was caused by tumor tissue. He’d been taking antihistamines for what was purported to be fluid buildup. What a shocking transition from a diagnosis of no cancer to brain cancer in just 4 days.BAA2A4C9-F08F-4B69-A5CF-FC875338D41D He was immediately admitted to the hospital where we spent the next 32 days. He was given 4 weeks to live, absent treatment. Most people would have gone directly to hospice. 493BC2D8-16CB-4E65-B121-073B0C18BDB5Michael lived for 17 weeks. He took hideous whole brain radiation, a barbaric treatment, and eventually,  was put back on Keytruda which had been stopped a year before. I’ll never know what would’ve happened if he’d continued that drug which brought him back from the brink of death in 2015. He became more incompetent but still remained himself in deeply essential ways. When I played him music that was special to us, he was responsive and aware. He refused to give up the possibility that he might still survive and showed the stubbornness which was one of his classic characteristics. Still, he mourned his own loss and thought in terms of how much he’d miss his family, his life and all things left undone.7B97F143-31E9-4FE0-8B57-B3262CF4A4A1 We loved him hard and he loved us back. He was a beast. As his brain was overcome by diseased , he lost his ability to utilize technology. When I’d try to stimulate his mind, he kept referring me to the “red notebook” which he said had the answers to all my questions and which I eventually found. C06F701B-0758-413D-A8F0-F4F3526A2CC5It was packed  full of thoughts and plans and dreams. He’d written an outline for an autobiography, one he’d never be able to write. I decided to interview him, so he could share his memories and know that his experiences wouldn’t be forgotten.  Oh, the stories he told. How he could still access those tales made me marvel at the strands of memory that are deeply tucked into our brains and which, when woven together, make us who we are. Even if that brain is inundated with disease. It’s my labor of love to make sure his stories are codified for the future. Since the beginning of time, human beings have made an effort to be remembered.01BDB82E-EC56-44CA-9266-744ED4FEDA7A The following words are for our children and grandchildren. They are my version of Michael’s petroglyphs. They’ll know him forever. And so it begins.

Michael’s Autobiography Outline

1)      Early life 

2)      Da Kids

3)      Record Service years

4)      Concerts

5)      High school hijinks

6)      The Revolution

7)      Teaching

8)      Sports

9)      Diving and Skiing(Water)

10)    Life in C-U

11)   Grammar school and Junior High

12)   Me and Renee on the road

13)   Cars and Bikes

14)   Lifeguarding

15)   The Crook

16)   Pets

17)   Construction

18)   The Pretend Hero

19)    Boys’ Trips

20)   Barnacle – One of Michael’s peculiar nicknames for me. “The partner I never dreamed of, the smartest person I ever met and probably the most loyal.” That’s what he told me while I interviewed him. Sigh. Lucky me.8F48D698-9A5C-4858-A7EB-81447C085B61First, I’ll share the stories he was able to tell me. Then I’ll try to fill in his outline from what he told me during our life together. Here I go.0868E017-1C9D-4588-B30E-2511E75B1632

Story 1) 

When Michael was about 2 and ½, he had pneumonia. He was living in Shaker Heights, a suburb near Cleveland. He said he lived in Shaker Heights twice as a little kid. They lived on Tamalga Drive. He was sick enough to be hospitalized.  His parents left him alone in the hospital. He woke in the night and climbed out of bed and was wandering around.  He wound up in the surgery area. The staff put him back in his bed and restrained him by his hands. This was his first real memory and it haunted him. My poor boy. D3AAD75C-18F1-4465-89A2-5E5546CA46FE

Story 2) 

Michael and his family lived in Fairport, New York for awhile. Since his dad was a salesman, he moved a lot in his early years. He remembered that he had an awful case of mumps there with both his cheeks hugely swollen. His parents bought him a giant box of Nestles’ chocolate bars to make him feel better. Hard to chew and swallow, though. He remembered that the backyard there had a big brick grill that was built into the ground. So the Mr. Grill thing and his barbecue skills were stimulated early. E848D3FD-3C7D-4B02-A7AF-AEFE3B846D73

Story 3)

When Michael was 4 or 5 years old, he lived in St. Paul, Minnesota. He remembered a canal and that his nursery school was located next to it. I suspect the canal was actually the Mississippi River. He thought all the boats floating by were very cool. There was also a freight line near his house. His dad used to take him to the freight yard to look at the trains. Sometimes they walked through the yard to watch the fast freights roll through. Maybe that’s what fostered his lifelong love of trains. Michael also remembered that they lived in a small house – behind it was what he referred to as a “giant wood.” Maybe it just felt that way because he was little. He thought it was very scary, but went exploring there. He called it the two-headed woods. I have no idea why. Maybe the trees made it look that way.3008BF5C-067A-4AF1-B740-D16E815B5BB8Story 4)

Michael loved clouds. One of his favorite pastimes was staring up at them, looking for animal shapes. I don’t think there was ever a time when he didn’t see one. Half the time I had no idea what he was seeing. But that was ok. He believed they were there.2C50A74C-3FC8-4BD1-B4C5-CCBC457F9633

Story 5)

When Michael went to visit his maternal great-grandparents, they took their very expensive Ming vase and hid it in the attic since they were sure he’d destroy it. They were so wealthy that they had upstairs and downstairs maids. There was a button in the dining room under the rug and when someone needed anything from the kitchen, they’d step on the button to summon the staff. Hard to believe. They also had a chauffeur who lived in the basement. Michael used to go down there to talk with him. Fraternizing with the help at an early age. This chauffeur loved to eat Eskimo Pies, chocolate-covered vanilla ice cream squares. He save all the shiny silver and blue wrappers and built a tall pile of them which he held together with a rubber band. 35255113-A37C-49D7-91E3-8D2246A5E155

Story 6)

Michael’s maternal grandmother remarried after the death of her first husband. Her second husband owned a farm in upstate New York. Michael  remembered being able to sit on a tractor there and going for a ride. That maternal grandmother was born into a  family who lived in Erie, Pennsylvania. They owned a clothing business. More on them later.B21654B3-F61E-477E-9DDA-768F4163130F

Story 7)

When Michael was 4 or 5, his family rented a house during the summer in Cape Cod. The house was on a country lane – down the lane there were farms and cows and open fields. One afternoon, the family got on a little boat and went into Boston. What Michael remembered most was stopping for sandwiches. His was butter and jelly and he thought it was delicious and exotic. A little boy memory. In the house on Cape Cod there was a basement. The owners had a rocking horse down there. Michael snuck down there and brought the horse into the yard where he played on it all summer.Ludlow School Shaker Heights, OhioLudlow School – Shaker Heights, Ohio

Story 8)

Back to Shaker Heights. When Michael was 5, that’s where he lived, in a small house on Euclid Avenue. Upstairs on the second floor, there was a secret entrance to the attic. Michael could get it open if he climbed on a toy chest near the door.  Forbidden fruit. Michael attended kindergarten at Ludlow School, the same one that his mother attended, even being in the same room she was in at his age.  The room was shaped like an octagon.  He got in trouble in that grade because he couldn’t draw a heart.C91E344E-424B-445F-B8C4-F24E9A04D855

On top of that, he had a lisp which required speech therapy. The center of town was called Shaker Square, a transportation hub. His parents pinned an identifying note to his jacket and he caught the bus by himself at Shaker Square to attend his speech lessons. A kindergartner alone. Typing this makes me want to cry, even though I’ve heard the story many times. Being quiet was a lifelong Michael trait that became understandable after learning about this tough challenge for a little kid. 2A3FB0E8-DB94-4B23-A212-258AE654F2DF

Story 9) 

In first grade, Michael was living in Wilmette, Illinois, a northern suburb of Chicago. His family lived on Lake Avenue, which was a very busy throroughfare. He rode his bike to Harper School down a narrow street behind his row townhouse, to be safe from all the traffic. One day when his parents were out of town, he was riding his bike when he crashed into the back of a parked car. He went to school anyway. At naptime, a girl next to him started screaming because apparently he had blood dripping all over the side of his face. His parents were out of town so his babysitter, Mrs. Woodhead, took him to the hospital where he got stitches. When his parents came home they were freaked out because his whole head was bandaged. He also remembered that Mrs. Woodhead kept asking him about whether he’d had a BM. He didn’t know what a BM was-his parents called them uh-oh’s. Figures (editorial comment).

Story 10)

Still at Harper School in first grade-Michael was best friends with three boys, a kid named George, one named Jimmy Bell and another named David Parkhill. Together they formed the ABC’s Woman Hater’s Club. He said the club didn’t last long. Editorial grin. 

So there we have it -the first installment of Michael’s memories, written exactly as he spoke them to me, with a few opinions of my own tossed in for perspective. There are more stories to share but I can only do this in small doses.  Watching someone so ill dig deep into his confusion was a remarkable experience for me. Unforgettable. FDA4BB3C-E133-4292-A703-88BB14A6786D

Cancer-Doctors-Grief Brain Salad

7319E8DD-BCA2-45C7-88F4-155DAE3B27FFI’ve been struggling with a dreadful case of writer’s block. I’m in the midst of four different blogposts right now. I write a few lines and hit the wall with all of them. One of them is about what Michael and I learned about doctors while going through his five years of cancer and treatments. I really want to finish it because I think what I have to say would benefit others for whom the future may hold a similar experience. I can’t get there.213CD8D0-312D-406F-82D5-7FB7E1BBDCDE Another focuses on more of the biographical and autobiographical information I hope to share with my family and their families, the lore they might forget, the lore they’ve yet to know. Michael had a full outline for his autobiography which he was never able to start. During the last part of his life, I interviewed him and got him to tell me some of his stories so that they’d never be lost. I was amazed to learn that there were some things I didn’t know, surprising because we’d talked to each other about so much during our life together. I knew that he had a few special words that he kept to himself-he was afraid I’d co-opt them and incorporate them into my daily jargon as I was wont to do. I want to finish that one, too.EF0ABE89-E3D7-4599-8DCD-E8AAC9031A87 Then there’s the one about all the different places we lived, photos included, that’s supposed to provide a(n) (I hate “an” in front of “h” even if it’s correct) historical timeline of the most interesting events that happened while living in each house. For a while when we were young, we moved almost every year. No wonder we stayed put in the house where our adult lives played out, the one where mine is still playing out. I want to finish that one. I really do. And then there’s this latest one, only a skeleton piece which has the miserable title, “Baby, We’re Not Going to Have Our Time.”8FD335D7-833C-44D9-89F3-2EE0F7C14831

On January 31st, 2017, lying in the emergency room, after his brain MRI results were given to us, that’s what Michael said to me. As tears poured out of us, we sat stunned by the diagnosis of carcinomatous meningitis, actually still Merkel cell cancer, but unfamiliar to the radiologist because of its rarity. On Friday, January 28th, 2017, we’d been told that Michael’s scans were negative for disease. I have an angle on that story but the fact is, the combination of all these trains of thoughts, all the required words necessary to write anything cohesive and orderly has just gotten to be too much recently.960FF62E-54CE-46CC-BAD5-A86E37E8C666

I haven’t exactly figured out why, but I have some ideas. Generally, I’d say that for as long as I can remember I’ve believed that no matter how big the obstacle, how daunting the task, how overwhelming the situation, I’d always find a way to bull through, push past, climb over, slide around or, whatever you want to call the method, overcome anything. Maybe the outcome wouldn’t be perfect, but I’d find the way to twist the problem into something I could work with, could live with, could conquer. I think my bar in life may not be as high as that of some people. For me, it’s been about finding value in being who I am, rather than being what I do. I already know I could’ve done more in the measurable, external ways. I never had a vocation – I had a job. I was good at it. But had I solved some of my youthful problems with self-discipline and focus, I could’ve been more. I’m ok with that. Money or the lack thereof, has always been a recurrent issue. I’m ok with that too. I figure, if money had been really important we’d probably have done something more about it than we ever did. There were circumstances in our lives that, had we chosen differently, might have made things easier. But given the choice of alienating the people who might’ve made our lives more comfortable but were dreadful human beings, and keeping quiet about our feelings, we picked the alienating road. I’m alright with that too. No inheritance in this organization, not even from the sale of a house. The choices we make, hopefully with our eyes wide open.63D9D102-5BC7-4F69-9A20-61C55D0F6380

I’m pretty good with the “who I am” bit. I was a good daughter, a good wife, a good mom and a good friend. I still am actively some of those things. I try to be a decent human being, on my terms defined by me. I’m hardly a saint. I’m a grudge holder and an unrelenting enemy, but not without reason. I always have a reason. Aside from that slightly vicious tendency, I think I meet my requirements for being a good person. FA02B15D-92B8-4C9E-A119-E9BF17349F9D

When Michael’s cancer was forced on us, after the initial shock, I gathered myself for finding the pathway against this new obstacle in our life. I focused all my intellectual power on finding a way to stop this disease from taking Michael’s life. I wasn’t delusional and I wasn’t positive there was anything to be done outside what the doctors told us. But I wasn’t constrained by the rules that govern the applications of medical standards of care. Being unencumbered by rules allows for casting a wide net, no matter what the focus. That’s what I did and I was so driven that I felt nothing was too big an obstacle. My task was like all the other other mountains I’d tackled in my life. I learned to read scientific articles and taught myself everything I could about Michael’s cancer. I contacted specialists all over the country and convinced them to treat me as someone with ideas worth trying. While Michael focused on trying to be alive, I reached for every possible treatment that could possibly prolong his life. And all the efforts worked. He lived much longer than the few months he was promised. But in the end, Merkel cell cancer was the obstacle I couldn’t overcome. I’ve come to terms with that, for the most part. In my capacity as an advocate and caregiver there were some walls too high for me to scale. Institutional rules and being powerless to control all the doctors blocked my efforts. I understand what happened but I’m still not at peace with some turns in our road.  I’m still mad. I’m still grieving. I still want Michael to come home.6934E389-DF7A-470D-9BA1-928E70903FB2

I don’t grapple with these feelings with the same intensity every day. I go up and down. I’m living a real life that’s current. I take classes and most recently delved into molecular biology, bees and jazz. I’m teaching myself about art, particularly the history of painting.  I’ve discovered so many new- to-me artists. I do love that. I joined a book club. I swim four to five times a week. I have art projects, knitting projects and seeds ready for this year’s garden.  I’m engaged with my family and friends. I’m concerned about politics and the state of the world. I worry about climate change. I’m sick of winter. The snow still falls.26DF7625-E65B-4F8C-B35E-F5C070D0EC18

At the end of these musings there’s a bottom line. I couldn’t climb the mountain. Michael’s absence has sucked away the quiet joy which was part of every day. His steady presence, love and understanding provided my anchor to this life. I don’t get to know if or when that might change. For now,  that missing piece of my life is frequently disrupting my ability to string a coherent essay together. Thoughts flit through my head that feel random and disconnected. I’m distracted. I also censor myself which is something I promised myself I wouldn’t do. I’m uncomfortable because I feel that people think I should be in a different place than where I am. Not everyone…When that happens, I get stuck and can’t write anything except my letters to Michael in which I still get to be all me all the time. I judge myself, feeling that sharing these seemingly unconnected topics in a disjointed way is not what writers do, not real writers. But who said so? Why am I trying to follow rules? I want to do whatever I please right now. I paid plenty of dues for a long time. I want to be done with rules.13C82A8E-1B78-445E-8063-B185A1798FE5

I don’t pretend to be James Joyce but he had the nerve to write Ulysses, a lengthy stream of consciousness tome because that’s where his mind was at the time. Maybe I can be a version of that for awhile, just letting loose what drifts through my head during those days when words fail, when all I can manage is wishing for something I can never have, when doing laundry and washing the dishes seem like huge victories. I’m on my own unpredictable timetable. I didn’t know what life after Michael would feel like. He used to ask me what I’d do when he was gone. I had no clue then and no clue now. I’m full of surprises, many of which I couldn’t imagine, no matter how many times we talked about what would happen to me. So here’s what I’m going to do now. I’m going to bust through this writer’s block. I’m going to be Leopold Bloom for a few minutes and purge some of the sludge mucking up my head. I’m just going to wander and meander a bit until I get over this big bump. It’s not Dublin. But that’s irrelevant. So here we go.3E79F1CB-A633-4304-86D1-8686FA6F5F2E.jpeg  I want to taste my mother’s specialties. She gave up cooking after my dad died. In a way, it felt like being orphaned. I want her stuffed cabbage and her sweet and sour cabbage soup. I want her fricassee, so spicy and delicious – I want to dip hunks of yellow challah into its thin, tangy juices. I want her impossibly melty chocolate cake with the citrus-y frosting that was a balance for the sweetness. And to devour her sponge cake which had coffee in it and stood six inches tall. I want her lemon meringue pie. I’ll always want that pie.8130176B-7B1E-47D8-A4A9-C6D997B556F2

I see myself at my grandmother’s table eating chunks of rye bread topped with apricot preserves, cantaloupe slices on the side. I hear her asking me to bring her a piece of bread in her thick Polish accent. I remember her calling prescriptions descriptions how she loved to look at pictures of sexy baseball players. I feel pangs of sadness as I can still see the pieces of paper on her dining room table which were covered with her careful renderings of the alphabet. I can’t believe she was illiterate.4EA3E005-9C73-46AD-A14A-FC972528C398

“I’m gonna fix his clock.” That is one of the ridiculous phrases my father said when he put on his menacing act. He was not wholly without courage. But as years went by, I thought he was mostly blowing hot air while internally, he was leading his fearful little boy life. Ironically, my mom, who seemed afraid of so many things, turned out to be the brave one. On our first wedding anniversary I gave Michael a chiming Seth Thomas clock. It stopped working years ago. I just had it repaired after decades of its silence. I fixed his clock. Oh, dad.

Random commercials pop up my mind. I don’t know why. The jingles that are tucked into some memory groove in my brain. Today I heard “there’s something about an Aqua Velva man.” Where did that come from? My dad and Michael  both used Old Spice. Old Spice means quality, said the captain to the bosun. Ask for the package with the ship that sails the ocean. Fresh as the sea, yo-ho, yo-ho. Well, I said I was going to just let it all out.

I think of Albert now and then. My first true love.  Every time I hear Your Song by Elton John I remember how terrible I felt when he told me that song reminded him of me. The trouble was,  I had it confused with Gordon Lightfoot’s If You Could Read My Mind which was about a doomed relationship. I wallowed in despair until I figured out the mistake. I never got a chance to feel happy about it until after we were finished. By the time I’d sorted out the mixup we’d broken up and gotten back together about half a dozen times. My innocence and trust were trashed by that relationship. In the end I think I returned the trashing favor. He came back for me a few years after the last breakup, matured and ready for commitment. I’d burnt my bridges and was already in love with Michael. EC5CFC52-D0CA-4A7B-B0DA-3D0EF159FC16 I remember the last time Albert and I made love in a house remembered locally for its architecture. We were so terribly young. I tried to communicate with him a few times in recent years. Fifty years later, he refuses to speak with me. I’ll never know why. We both went off and lived our lives. He was a success, at least from what I’ve gleaned through the internet. At my 50th high school reunion, most people were just happy to see that many of us were still alive. I thought he might feel that way. He and I shared something real and powerful. At one point we both thought we’d wind up married to each other. Two ships passing and all that other trite stuff, I guess. I have a couple of his highly entertaining pieces of writing about our relationship.

One was a fable about Stormy and Little Chicken. No doubt who was who – I was Stormy, the wild horse with eyes that alternately flashed and then went tender. He was poor Little Chicken. The humor and fear still resonate. Then there’s the one about the phony science experiment which measures the physiological reactions of its male and female subjects, two lovers who drive each other mad. They’re found dead in a lab, electrodes still attached, with cause of death measured in extremes of love and torture. Still priceless. I’d love to share those with him. But he’s closed that door and won’t look back. I can’t understand why but I guess it’s evidence that I was powerfully loved more than once in my life. I know that makes me lucky although sometimes it’s easy to forget.A12AC972-08A5-407A-B450-13A3002236C6 I’m re-reading One Hundred Years of Solitude. I do it every ten years or so. I sink into it, like a comfortable friend. I love it as much today as when I read it the first time back in the ‘70’s when it was published.

I’m watching mostly period pieces on television. Most have historical foundations although there’s no pretense of adhering to truth. They have lush costumes, violence and lots of romantic, passionate sex. They have no relevance to current affairs. I’m amazed by this choice of escapism. I’ve never read a romance novel. Some of the shows are based on books I’ve walked past for my entire adult life. I think of myself as a practical realist. Michael was the romantic in our relationship. I guess I’m filling the void by loving what he’d love. It’s kind of like wearing one of his old t-shirts. 113F3C22-5D8D-43D6-BFFA-244AE73EC6A8Recently I had a photo of us from 1972 screened onto the front of a shirt. Doing it was fast and easy. I’m resisting the urge to put our faces on all my clothes. I never thought I’d do this. I mocked people who did this stuff. I would never have worn an outfit that matched my daughter’s or any of that cutesy stuff. Surprise! Another thing I couldn’t imagine.Tennis Australian Open 2019, Melbourne, Australia - 16 Jan 2019

Roger Federer continues his 2019 schedule this weekend, playing at Indian Wells in the California desert. Just a few days ago he won his second tournament of the year in Dubai. I can’t keep counting on his play to get me through life’s challenging parts. I confess, these past two years have been more tolerable because he’s chosen to continue to play. The sport guy who donates millions to the poor.  Small pleasures.9A6895FF-C334-4BA4-A23C-CD2BB81B8913 I’m lucky to be so close to my kids. They understand how I feel because they lived with their dad and me and they felt the power of our relationship. They had their own intense feelings for him which they’re dealing with right beside me. They think that my “golden years”  pretty much suck. So they try to help. I’m a loyal Beatles fan. I had a pen pal from Liverpool when I was only twelve – I lived and breathed their music. I was lucky enough to see them perform at the Chicago Amphitheater when I was thirteen. In 1989, both my parents got cancer, Michael had a herniated disk and I was managing work, two kids and a lot of stress. My dad died in September of that year. In October, Paul McCartney was on tour and Michael got tickets for us through his record store. For some reason, I felt it would be disrespectful to go a rock concert so soon after my dad’s death. Over the years, it’s been one of the choices I regret and I work hard to keep regret out of my life. Recently, I saw that Paul was touring again. He’s almost 76 and this can’t go on forever. I toyed with the idea of going to the closest venue, but opted out due to the expense and other plans I’ve made for this year.

Today, tickets magically showed up in my email, courtesy of my babies. Of course they’re grownups but I’ll always think they’re my babies unless my cognition vanishes. I hope I’m gone by then. In the jumble of thoughts that are no coherent story, I’ll end with that vignette. One regret will be erased forever. I’ll take it, with gratitude. May my next foray into the writer world be more focused and coherent.0DEE05EB-FE78-4FB6-9204-51034A989098

Talk Show

D56FFA2B-2865-40FB-B36A-AD634F12AEDE

I like talking. I always have. There are unlimited choices to talk about ranging from the mundane to the esoteric. I’m not sure I could rank my interests. In general, it’s hard for me to think of a topic that I wouldn’t want to discuss. My head is stuffed with ideas, theories and opinions. I’m curious about the world from the microscopic to the great big universe. I want to know as much as I can shovel into my mind. The older I get, the more I want to know. I’m one of the lucky people for whom school didn’t interfere with my love for learning. Talking and sharing makes learning deeper, richer, at least for me. Bouncing ideas off other people is a great release and also a critical way to stretch your intellect. Then there are some basic health issues. All things being equal, if I didn’t talk as much as I do, I’m pretty sure my head would explode.37860536-EB46-4F7E-9071-40EC781AB054

During my long years with Michael I talked with him about everything. When he was what we laughingly called a record magnate, or more realistically, a person who co-owned a music store for 27 years, I talked to him on the phone as many as half a dozen times a day. I’d be working at my own job with random thoughts percolating in my head and I just had to share them. What’s funny was that he wasn’t a big talker at all. He’d always listen but unless what I was chatting about had some undeniable interest for him, I’d wind up carrying on the conversation all by myself. He let me roll on and I think he understood that one way or another, my ideas had to be expressed.51F8C5CD-FF0D-4432-A2E1-ADB79ED65F29

In person, he’d look at me with a light in his eyes and a wry, benevolent smile. I’m certain that he wasn’t hanging on every word I uttered, but I felt satisfied after my daily purges. When he began his teaching career and was less available to me during the day, I’d be waiting eagerly for my talk time, usually after dinner and the evening news, or right before we turned in for the night. As time went on, he told me that he thought my perfect career would be talk show host. Except that I wouldn’t have any guests.4336EE39-7E0E-4127-9026-9B2B13976E9F

Just me, a microphone and the camera. I would argue that I needed someone to participate in the conversation. But now I’m not so sure. In the current iteration of my life, the person I see most, one-on-one, is my son. He tells me that I have my own monologue going on, rather than interactive conversations. Given that my primary listener is gone, I’d guess that’s fair. I think I build information volume in me that no longer is released on a regular basis. When opportunity presents itself, out it rolls. I’m not insulted at being accused of dominating conversations. I suspect that not having Michael as my listening outlet has interfered with my ability to clamp a filter over my stream of consciousness verbiage. Or maybe some self-awareness has diminished. In any case, when someone appears, all the internal dialogue just pops out. I can’t precisely explain the dynamics of what’s going on in my mind. I suspect that my brain is missing some shutoff valve, or that my personal brain chemistry lies outside the median of whatever is customary for limiting thinking overload.D13B7387-5B54-41AA-8149-083A4A5B1536

Back in the days of my psychedelic experimental youth, I wanted to experience the expansion of consciousness that was promised by using LSD. I had a healthy degree of skepticism but was ready to try. I still remember my first acid trip. I liked the hallucinations part quite a bit. But I didn’t really believe that any cosmic thoughts and revelations would be unearthed by a drug. I wrote on a yellow legal pad during that night and although my ability to focus was a bit off, I don’t think I was any more enhanced or impaired than if I’d been drinking. After a few more tries, I quit doing that stuff as I identified my experiences as nothing more than exaggerated reality. The days of fatigue that followed weren’t worth being in that more intense reality when the one I had was full of its own challenges. I was always mentally present, my executive function a bit wobbly but intact. Still thinking.

5805A751-2C4E-4B7C-A207-B0CE15C6D3F7During our life I would frequently ask Michael what he was thinking about and he would often say, “nothing.” Nothing? What is nothing? I can’t imagine the absence of thinking. My mind is whirring along all the time. Even when I’ve practiced meditation I can’t say that I’m not thinking, that I’m just being. I can reach a quiet space, but in my style of meditation, I’m conscious of deliberately releasing the flood of thoughts that are in my head rather than just hanging out with my mantra. Whether that means I’m really meditating or not, it works for me in small doses.9F18B865-E953-48A2-9A60-6BF6DEDAD651

I’ve been this way for as long as I can remember. Sometimes it’s exhausting. I’ve turned the stream of ideas that I used to share with Michael into the letters I’ve been writing him ever since he died. At the end of each day, I pour out whatever ideas and feelings that have run through my mind. Some letters are longer and more detailed than others. The absence of that daily communication is the hardest part of being on my own. So far, I haven’t caught myself talking out loud very often, spilling my words into the void. But the truth is that every night, I do call out Michael’s name before I sleep, inviting him to visit my dreams. Sometimes he shows up and sometimes he doesn’t. I’ve had dreams so vivid I’ve wakened in the night with my heart pounding and I rush to sink back into those before the feeling subsides. Other times, he’s just present and we are leading a very ordinary existence, doing chores, discussing household business in the most normal way. I wish that I could harness all my mental energy and will him into my subconscious space but I haven’t been able to find my way to that. So. That leaves my family and friends to absorb the mountain of thoughts that I process daily. Despite my intense desire to never censor myself, there are some subjects that I have to save for my journals. Although I personally don’t like rules, I understand boundary issues and rather than choke on a growing stack of unmentionables, I can write those in a space where no one has to listen.4536A6B0-92F9-44D0-8D12-20DCCB37F4F2

When I’m gone, whoever becomes the arbiter of my possessions will have to decide if they just recycle the journals as they would any other paper or read them. The same goes for the personal photos I have of Michael and me that I simply can’t destroy. He told me I should get rid of them years ago but I can’t and I’m not sorry. Aside from the personal matters, I have a myriad of other topics to throw out to the world.

Here are a few from today…1) I can’t understand why every book I’ve read in the past ten years has spelling errors. Who’s doing the proofreading? Spellcheck? I can see how an automated system can allow for homonyms to escape into the final product but not actual misspellings. The other day, the word “categorize” was posted on a national news media screen, incorrectly spelled as “catagorize.” Not the end of the world, I know, but sloppy and lazy. I find this stuff irritating. 2) I’m wondering if I’ll live long enough to see Donald Trump disappear from the public view. Every day, his presence feels unavoidable and I find everything about him repugnant. I could list all my descriptive adjectives but I suspect that would become an unwieldy task. He’s hovered over the most difficult years of my life and I truly believe I’d feel healthier if I didn’t have to think about him any more. I hope I get there. 3) If I work hard enough to develop my garden will I make a tiny dent in the loss of insects and birds that’s lighting up the natural news? I’ve always been a kind of hurling gardener, just grabbing plants I found attractive, getting them into the ground and seeing what will happen. But in recent years I’ve become more deliberate, hoping that in my tiny corner of the world I can make a difference to all the creatures at risk from pesticides and destruction of habitat. I’m going to try. I want to be an oasis for the little ones we’re wholly dependent on in the long run. I want everyone to agree with me and do something about it.1E358DEF-FA2D-42C3-8608-DA49F0DA1BEA

4) I hate pharmaceutical companies and insurance companies run a close second. I want the rules changed, I want their lobbyists eliminated and I want everyone in the country to have access to health care without falling into poverty. Why can’t we get this done? Maddening and backward and all about profits. I’m so done with this issue.

5) The complexity of the operations of the human body are as mind-boggling to me as lightyears, galaxies and black holes. Probably more than that. I took a class recently about molecular biology and the sophistication of our microbiome along with its vulnerabilities are hard to wrap my head around. But I like to think about what I’ve learned and make up theories that I wish would make treating cancer easier. And I’d like to know where my wavelengths go when they peel off into the universe. And… maybe I’d better stop here. For today. 9a294fb0-0b75-40be-9bc2-b5e676a7f6cc

 

Spiced Grief

7995377D-E3E8-41B6-8ECA-008EA3A76ECAA few days ago, I was mentally occupied by the popular trend of  minimalist reorganizing and purging of things that no longer spark joy. Although I like being organized and certainly am not on a mission to acquire material goods, I’d pretty much decided that this whole focus on what we own was basically irrelevant to me. Stuff is stuff. I have more important things on my mind. But then, just when you think you’re done with a topic, boom. Another angle pops up and if you’re self-aware, it needs to be considered. This pop-up angle is also about stuff. But there’s no joy involved. There is grief. Oddly, in this case, the grief is spiced.149A4117-C5E6-4088-82F1-A2B7549888DC

When Michael died, I needed to move quickly to attend to the business of clearing out a bunch of his things. My son only had a week at home before leaving the country for 6 months. I knew that I wasn’t going to keep Michael’s clothes for that long and I wanted my kid to choose anything special that he wanted to keep before I unloaded the closet and dressers. I was also worried about cleaning out Michael’s study. He was a foot taller than me and had shelves towering above his desk, all the way to our 9 foot ceiling. I felt that the task of trying to disassemble the accumulation of heavy books and school resource materials was going to be more than I could physically manage. So together, my son and I attacked those projects, setting aside what would go to my daughter and her family and stashing what he and I wanted to keep. We got everything done, he left the country and I just walked away.

 

I haven’t remodeled anything. There’s a bunch of empty space with no new plan for it. I haven’t felt compelled to switch out what once was there. The months following that purge were taken up by the bureaucratic busy work that follows death and by planning a memorial for Michael. That event ultimately became more like a curated museum exhibit.

 

He was a public figure in our community, having co-owned a local business for 27 years prior to becoming a popular high school teacher. Interspersed in those years was a political career which included being both an elected and appointed official for 20 years, as well as serving on multiple boards and commissions. I’d never done anything like it before. Ultimately, it was a cathartic labor of love that helped me sort through our life’s memories and find a way to share them with a lot of people while not exposing myself publicly to overwhelming attention. Hundreds of people came, ate a bit, watched a slideshow, listened to music and walked through the exhibit which kept the focus on Michael. That worked for me.

 

In the meantime I was trying to attend to my own needs, working my way through the exhaustion and loneliness which were my constant companions after his death. I went to therapy, I traveled, I swam and I took classes. I gardened and went to the movies. I read and wrote, listened to music and spent time with my family and friends. The following year I became a principal organizer for my 50th high school reunion. Busy times. Except for the disposing of most of Michael’s personal things, the inside of my house and the garage are virtually the same today as they were when he died. I really like these spaces. I’ve been glad to be in them. I’m comfortable. But I have a list of chores that need to be done, a list that has some items crossed out, while some still sit there, staring up at me. Their persistence should have been a clue for me.

 

Somewhere in his 30’s, Michael’s love for food took a leap into growing it and cooking it rather than just eating it. To the great joy of the whole family, he accrued a wide range of recipes which included many favorites we’d discovered together on family trips and his own personal creations. His vegetable and herb garden ensured great flavors and over time, he used them in both fresh and dried forms.3B10FA74-D4A7-48B2-B515-D98AAEC11049He canned every year so there were tomatoes for spaghetti, chicken parmesan and pizzas, corn relishes, pickles and special rubs for chicken and ribs. He built two spice racks for the kitchen and another devoted to his collection of hot sauces. I still cooked but I never loved it the way he did and over time, my repertoire shrank as his grew. Toward the end of his life, he looked at me with great concern and asked me what I was going to eat when he died. That’s one of the conversations  I’ll never forget.

 

My interest in cooking didn’t change after he was gone. I wrote a blog post  last year called The Lonely Kitchen. Although I’ve cooked a bit for my kids and grandkids, when left to myself,  I tend to grab what’s easy, rarely preparing meals for myself. I actually started wondering if my stove still worked. While I’ve been okay with this lifestyle, the kitchen itself, never remodeled and already showing its age, began to look pretty dingy. I was appalled to find cobwebs in cabinets and containers that had expired years ago. The kitchen chores clearly needed to be bumped up to the top of the list. My son helped a bit one day when I asked him to reach the top of the spice rack that was almost at the ceiling. We agreed it was dusty and disgusting but as he was leaving town, we put off making it a project until he returned. Meanwhile, I was feeling that I really needed to move forward with it. I kept thinking that avoiding this task wasn’t a simple thing, but was masking a deeper avoidance issue that I couldn’t quite pin down. So yesterday I decided to start with the spice racks and get rid of the expired ones, clean the shelves and try to deal with knowing that I’d need to adapt to the more barren look that awaited me.71D8B264-33A0-4AC1-A647-81309E918849

I didn’t expect that job to crack me open and unearth the stream of grief that ripples along inside of me. Recently I’d been thinking that although I feel somewhat emotionally flat, I’ve not been breaking down as often as I did last year. The second anniversary of Michael’s death is looming and although I miss him every day, I’ve been pretty stable. But the bottles of spices, partially used and long untouched brought me to my knees. Michael wasn’t his clothes. But there’s so much of him in the racks he so lovingly built, and the spice bottles he acquired so he could create luscious food for us. There are containers of his own concoctions that were for his special recipes. I can feel him in the kitchen, thrilled when something was just the way he wanted it, and furious at his failures. The spots on the ceiling are from those.2402FDF2-F167-43B1-99B6-138E550311E0

I see him standing with our grandson, teaching him how to chop and cut while they chatted. I remember how he loved to have a beautiful presentation of his meals with garnishes plucked from the garden. How can he still inhabit that room and those dusty bottles? Stripping away all the partially used containers and tossing them away was incredibly harsh.104AE32A-A77C-4A43-BCF0-EA71E706ADBB

My grandson came to visit me partway through the process and said he’d wondered when I’d get rid of grandpa’s spices since I didn’t use them myself. I wept at that comment with its absolute truth about what had been and what would be. I know I won’t be replacing the bulk of what needed to be gone. This sweet 8 year old boy slung his arm around me and told me it was okay for me to feel emotional. The incongruity of our dynamic was lost on him but not on me. The little kid understood that clearing away the little jars and containers felt like I was clearing away pieces of Michael in a different way than I’d done before. For me, he wasn’t in his clothes or his books, but damn if he wasn’t in those foodstuffs. And the truth is, keeping the kitchen a somewhat gross shrine has been an unconscious strategy I’ve employed to avoid how desolate that place is without accoutrements de Michael. There is no phase in all these goofy grief steps for spicy grief. But that’s what I’ve felt for the last few days. And I’m going to stew in it until I’m ready to move on. 8B15AE12-6057-4F8C-9453-26257C7C7175

Melting Candles

FFF1406A-825C-48ED-86C1-FD3F38DC9825.jpegSome days it’s hard for me to keep track of what I’m thinking about. Certain common themes and mental threads stitch the passage of time together in a somewhat organized manner. But this life is very different from the one I led when my family was in its center and my job was to be a caregiver every day. Because I’m living such a loosely structured existence at this time, there’s plenty of room for digressing into a whole slew of random rabbit holes and seemingly disconnected ideas. Sometimes that’s fine but periodically, it’s unnerving. I can’t decide if I should just go with whatever the day brings or try to wrestle my thoughts and ideas into a more predictable order. Generally speaking, I suspect that most people prefer knowing what’s likely to happen rather than stepping off into the unknown. I know I used to feel that way. I was always trying to look down the road, get ahead of the game, make lots of plans and be prepared for the possibilities. After years of living with Michael on the shifting sands of cancer, treatments and scans, I’ve changed my view. The only thing I can say with certainty is, that absent an unexpected early mental decline, I think I have the tools to handle most of what life has yet to toss at me. What I was always most afraid of is still what I’m most afraid of – a catastrophic event involving my children, and now my grandchildren as well. FA140099-E545-4CA6-854C-C520C0446770Both Michael and I had discussed that fear many times. Each of us felt we could survive, however miserably, the loss of one of us. But we didn’t know if we could manage losing a kid. Aside from that constant, I don’t feel afraid of much else any more. I’m sure I’d feel scared if a person was trying to kill me, up close and personal, but that’s a long odds situation. The normal stuff of life, illness, insecurity,  performance anxiety, feeling unloved, all the things that once felt overwhelming, simply don’t any more. I’m not eager to be sick, but a big part of that is my concern for my family who were forced to take on unexpected and early anguish because of their dad’s cancer struggle. I don’t want them to have to experience anything like that without a lot more distance between losing their dad and having something happen to me. But not everything is within my control. For myself, the fear of disease and death doesn’t hold the same power it once did. I’ve faced down so much death that it’s been demystified. Although it’s hard for anyone to imagine life going on after we exit, that’s not the same as fear. 8BBD9B79-F829-43AC-B8D9-9CE5FD15804C

I’m taking a molecular biology class right now. The subject is provocative. The focus involves the the tree of life and its branches which over the course of scientific study, has been modified and expanded. One of the most interesting pieces I’ve learned has to do with something called horizontal gene transfer. Basically this means that bits and pieces of DNA can move between organisms. If there is usefulness in the transfer, the genetic material blends together. If not, the new cellular matter will just die off. This kind of thing has been observed in bacterial life and is probably the reason why some microbes evolve into superbugs that are antibiotic-resistant. In other words this is not your garden variety DNA transfer from parent to child. So far, no one knows if these transfers are limited to the microbial world. And the microbial world that inhabits our bodies is a vast universe. To me that means there’s a long way to go in understanding the way our little bugs, which populate us in the billions,  work their collective magic. While listening to the class lectures I started thinking about how Michael’s Merkel cell cancer was a biological success story. No matter how it was attacked, surgically, through radiation and chemotherapy, with targeted mutation drugs and with immunotherapy, it always managed to navigate its way through his body and pop up somewhere else. I’m talking about the success of his disease rather than the ultimate cellular failure of his immune system. A different point of view.  If anyone could figure out how all this stuff works, cancer would always be curable. Such a long way to go.D63819AB-299E-45BF-B042-27CC2A50644C

And then there’s the aging process for those of us who are still here, living our lives as the inexorable changes that time wreaks upon us silently hums along. I notice that amongst my peers, the topic of health and body changes has become a lot more dominant than it used to be. In the past year or so, I’ve had friends who’ve been treated for colon cancer, prostate cancer, breast cancer and adrenal gland cancer. They are at different stages with prognoses that also have varied possibilities. Suffice it to say that these people are engaged in a different world view than the ones they had prior to diagnosis. There is the  friend who’s had a brain aneurysm and a person who suffered a catastrophic stroke. Then there are the kidney stones, the skin disorders, the joint replacements, the neuropathies and the weakening bones. And let’s not forget about aesthetics. Because of a healthy sense of humor that I’m fortunate to share with other gallows-minded types, I’ve had some uproariously funny talks about hairs growing out of the most improbable places. And what about the other ones that seem to have vanished overnight? Facial creases and crepey skin are other entertaining topics, not to mention age spots and tooth issues. Bodies aside, there’s  the weird time thing. What magic got sprinkled over time management? Why does what once took an hour seem to require three? And what’s up with all the mulling? Not wine, mind you, but mind mulling? As the work world requirements diminish, there’s all this room for pondering the issues. Maybe it’s all navel reflection but things had to move a lot faster when there more external demands on time.582D5806-B368-4238-BFE7-E72F6986B784

I’m now reading three books at once. I can’t decide if this is efficient. I’m trying to decide if I care about fixing things in my house or if I should spend all my money traveling before I can’t do it any more. I think about how to get out of this world before I forget who I am and become less mentally capable. I’ve seen that in action and am profoundly averse to participating in that lifestyle. How do I please myself while still caring for my family? I can’t figure out how some things work. While parts of me have slowed down why do I still have a strong sex drive when I’m only interested in sharing that piece with my person who’s dead? Why do I keep making long lists of books to read and places to go and chores to do when I know that I’ll never get all of it done? My mind darts off in multiple directions unconfined by anything other than the physical differences between me from the before and me now.5F0C630F-2AEF-4F38-8735-AFD23B52F7B3

I keep swimming away, slowly and steadily. The water is still my friend, despite the chlorine which is probably pickling and brining my insides while most certainly contributing to my drying skin which must, like everything else, abide by the law of gravity. My 125 year old home has succumbed to gravity. There are gaps between the porches and the concrete steps up to them as the ground has sunken. There are hairline cracks in my plaster walls.0ACDA280-FC9C-4557-871F-B632AE6A73B3

I don’t know the pace of these movements but they’re clear and obvious. As they are in me. As they are in my longtime friends when I actually look at their corporeal beings instead of into their eyes which is where our friendships truly reside. We are melting candles, still burning but slowly diminishing over time. Yeah. That’s the metaphor that works for me.