When We Were Legendary

2c7b4cf8-a778-45e7-aff4-d5953e90fe35Dear Michael,

The polar vortex is upon us now, howling outside our bedroom window, wind chill -30 degrees. I’ve left the thermostat at daytime level and water is dribbling from the faucets. My brain is whirling right along with the vortex. Today I spent some time looking at physics videos which explained wavelengths. I still feel your wavelength, right next to mine. I’m trying to figure out where your energy went or rather where it is now. Is this the stuff of future science which will finally be able to measure all the sensations people have that fall into the category of inexplicable?a2328b1a-d619-4f53-87ba-699c054f27b3

Sometimes I feel like you’re Princess Leia popping out of R2D2, when her hologram said,  “help me Obi Wan Kenobi, you’re my only hope.” I think you’re out there like that, some times closer than others, making your presence known. Our kids feel you too. And  you’re in our house always, palpable although invisible, at least to the naked eye. Who’d have thought that a sensible person like me would think these thoughts?09c8a632-12bd-48fe-86b1-42035ba70f1c

Last night I read my journal from hideous 2015 when our world was crashing in on us. I have no idea how I survived that year, the relentless fear, the awful events piling on, one after the other. You were rejected from the major clinical trial for Merkel cell carcinoma in January. In February you had an enormous tumor sliced off your head, almost to your skull. Each day you got so much more ill and you were in dreadful pain. The doctors were wrong about too much and I knew it. They had such narrow views which they clung to because they didn’t know how to manage your orphan cancer. You were the first patient to ever be treated for it locally and all the far away doctors thought you should be in the clinical trial. You were terrorized, difficult to deal with and our differences were so magnified and I thought I would go mad. You, quiet and withdrawn and me, talking relentlessly and aggressive, trying to peel you out and away from death.f37354c0-0d5c-4030-802a-a17aad9081f6

And then my brother died in April. My mother’s dementia worsened. She was asking me where my father was, and her siblings, and when I told her they were gone, she cried and said she’d missed everything. a5c43574-bcf5-49c3-928a-322dfcc68e39 My relationship with my older sister ended back then as did my friendship with our dear friends and neighbors. The cancers of you two husbands took us wives into opposite ends of the universe and we broke apart. You declined day by day until our local oncologist pulled a desperation move and acquired one of the immunological drugs off-trial as a last-ditch effort to save you. That was mid-June. The treatment was miraculous but exhausting as we crawled and clawed our way through each treatment.f5ebd063-0f2d-4b1b-b4fb-bb1749ea58e9

In July, my mother fell, broke her hip and was hospitalized for eight days. I flew up and back from you to her, from her to you until she died on the 25th of that month.ab3d71bb-605b-410b-8a86-e07282007555

Then our beautiful Flash, the dog of my life died, only five days later. Three deaths between April and July. I was sure you were next. Rapid funerals and then back to trying to help you survive. Our kids were struggling, we were all struggling. I was exhausted after reading through the events again. And I thought last night, can I ever really write the book about your cancer? I’ve been trying for over a year. Maybe it’s not the right time.336cb7fc-9a8c-40a2-bdda-4616e7dee1e5

Maybe all these letters I’ve written to you since you died are really that book. I can’t say right now. When I write to you, I feel just like I did when I talked with you, often multiple times a day during our forty-six years of friendship and certainly every night before we slept. Writing you feels easy and natural while writing the other book makes my words freeze in my head. When the second anniversary of your death comes at the end of May, my letter total to you will be about three hundred. I’ve laughingly titled this book P.S. I Forgot to Tell You Something. Maybe it’s really the cancer book, the one I titled : Be 278. That title came right after we got your diagnosis and saw on the Merkel Cell Cancer website that only 277 people were alive five years after detection if their disease was metastatic. That was you, my boy. You made it. We got our five years.133eb2a6-bc8c-4b12-a663-ebf2c6d4cd20

My head spins, trying to decide what I should be writing about. All your treatments? The moments where, had things gone another way, you might still be alive? The truth about clinical trials? All of those things feel too big.8a8a662d-bb8f-46a3-b97a-edeb5939e421

Instead, let me tell you about my day. I went to Lifelong Learners school for people over fifty – I’m taking one class about molecular biology, one about honey bees and alcohol, and the last about women and jazz in movies, later this month. The first two were both enjoyable. But I was thinking of how little diversity exists among the students and I feel like an imposter sitting with such a homogeneous group. I saw many retired doctors and professors. Do I belong among them? Seemingly. But the societal reflection of cultural stratification drives me mad. I know it’s complicated. I want it to be different. Nothing is ever simple for me. Not even taking a class for my own personal edification.

I long for simplicity but I guess it’s not how I roll.And I’m still thinking about reading that dreadful journal. Mostly, though, right now I want to sit back and stop remembering what it was like to feel and see your tumors in 2015. I remember everything, the growths on your head and the back of your neck and your clavicle. The one I felt in your left groin.

Watching the disease run through you was so terrifying. Why did your cancer have to be so visible? I haven’t looked at the photographs of its seemingly inexorable march for awhile. Back then I know I felt my intellect was transcending my emotions because things would have been unmanageable for me if I didn’t do that. But right now, the emotional side is driving my bus. I want to be back in the before. When we were legendary.2e3bbe47-8736-4afc-8e07-5bd7a1b81bf8

When we took the 1970’s motorcycle trip to Ralph’s farm with our friends and we got the room with the single bed. And we didn’t come out for days except to use the bathroom and to get an occasional bit of sustenance because we were discovering ourselves as lovers after our months of friendship. We wound up being perfect for each other and we burned with passion and couldn’t get enough of us. Everyone else on the trip, including our hosts, made our hedonistic behavior part of the lore of that farm. The couple who were like ghosts, covered in sweat, physically entwined and so zoned into each other that we never experienced anything but ourselves for those days. Yes, when we were legendary.

That’s where I’d like to stay in my mind. Boomerang your wavelengths back into that space and be with me. I don’t need much more than that to fuel me and send me forward. I still feel us, glued together in that incredible time of discovery and unity. The mental, emotional and intellectual cataclysm that powered our friendship, the one that I still can’t figure out, was already in place. Then we made the icing on our cake. Endless cake. I still taste it and marvel. What happened? Now I am all about the absurd romance and “you’re the one for me” notions that I’ve always dismissed intellectually when I’m especially sage and thoughtful. I’ve never really believed that stuff. But evidently it really happens, because here I am in love with my dead guy, still wearing my wedding rings, talking to you every day in the ether.When we were legendary. We are still legendary.

I am crawling under the covers, listening to the wind trashing things around me, metal hitting wood, not knowing what morning light will bring. Frost covers the bedroom windows. But I am hunkering down in our place, warmed by the heat we generated for decades, still burning inside me. Legendary.ab40a756-a4bf-40e0-8ca2-27bd1bb30a2b

Vacation/Reflection

I’m not a big fan of flying. Being inside a container thousands of feet above the ground hits me in my weak spots, claustrophobic acrophobe that I am. But once the plane was over the clouds, I settled in and enjoyed the view as I pondered the two-week interlude I’d designed for myself. I was heading to the Gulf Coast of Florida for the first time on my own. I can’t count how many times Michael and I had traveled there together. Although I’ve taken several trips since Michael’s death, this vacation was a first for me, but not because of the destination. I chose to place myself in my most dreaded position, odd person out with a married couple. 871b54c3-ac9f-421c-9cd6-d87ab9d5215fGranted these are two people I’ve known for decades. Although we’ve lived in separate cities and haven’t seen each other that often during the past thirty years, the bonds of our youthful friendship forged a reliable foundation for my new now, the single me. 0C2D5F6B-C336-4306-AA66-D13392BCAFF2.jpegBoth of them also knew Michael well and most importantly, they knew us as a couple. I was so happy to find that my feeling Michael’s constant presence and including him in my regular conversation wasn’t odd or alienating for them. In fact, after I went home, both of them remarked that while I was there, they felt like Michael had been there as well. How wonderfully validating. They said that back in those old days, anyone could see and feel how crazy we were about each other. 

So my powerful feelings aren’t strange to them, but rather, expected. That acceptance made me feel surprisingly relaxed and truly able to appreciate my trip rather than spending time worrying about whether I’d be too far out of their loop. Maybe I already knew that somewhere inside me. Whatever instincts may have been operating, I’m grateful for my choice. I carry Michael close to me, always. 4d2ac24a-035d-4260-8edd-c1e5b6e538f4I’ll willingly admit I was nervous about spending two weeks with anyone, much less married people. Frequently I’ve sensed, especially when I’m socializing with my peers, that referencing my constantly feeling Michael’s presence during a casual conversation makes some people feel uncomfortable. I don’t know exactly why. If I’m not uncomfortable, why should they be? Maybe people think it’s creepy. Maybe there are some expectations I’m not meeting. There’s the one year rule for example. Apparently you’re not supposed to make any major decisions or changes for a year after a spouse dies. Says who? Some people may be perfectly capable of altering their lives in less than a year. Others, maybe not. I categorize that stuff as “not my business.” Then there are the ones who think I’m not yet ready for male companionship, but likely will be sometime in the future. To me that implies that there’s something not right about preferring to be alone. When did that get to be part of the social discourse? I choose to spend a good deal of time as a solitary person. I always have. That is deliberate. I’m a stealth loner. 2d2f31ab-1fec-4759-90ad-ecf303b663d0Because I’m pretty adept at socializing, maybe people think it’s my go-to style. But it’s not. Michael and I often felt like co-hermits. It was okay. I like being by myself. Sometimes Michael and I would laugh and refer to ourselves as toddlers, doing parallel play. Next to each other but busy with our own things. We were really successful with that modus operandi for a long time.0c6f7a5e-5cf9-43d2-ba04-531d24f01deb When cancer entered our life, we had to learn the art of living day by day. We got pretty good at that although with the onus of death always hanging over us, the challenge was indeed daunting. Now I have trouble looking too far down the road. I have no idea what time is left ahead of me. Maybe many years or maybe not. I still have so many projects that I want to accomplish, before I either become unexpectedly limited or because my life ends. Most of the chores on my lengthy list require concentration and isolation. I do maintain social contacts and interactions but I’m more concerned with getting my stuff done than hanging out with people. Right now I’m trying to find a balance and equilibrium that allows me to be mentally healthy – one hand in the relationship world and the other doing my self-assigned tasks.

I had a fabulous partner for the bulk of my life. The only void I feel is Michael’s absence. I don’t need anyone to fill that space. A lot of the time I still feel like he’s here anyway. I am not lonely for companionship. 00a89bf1-edb6-4515-aafe-4c9fca30e556So this trip was a big deal for me. Being able to express my strong sense of Michael’s presence without being judged was a great gift from my friends. Being allowed to be my truest self made the deep appreciation I feel for the rich environment along the Gulf of Mexico easier to access. Setting aside the social pressure I sometimes feel about  my ongoing relationship with Michael made this trip special. No arbitrary societal rules. Sweet relief.

For many years, Michael’s parents lived on the Gulf, so we visited regularly during our life together. Being in that familiar physical space again was evocative. We loved the water, the soft white, sandy beaches and the trees and flowers so different from those in our temperate climate. And the wildlife. Exotic birds, lizards, dolphins and fish just hanging around living their lives. The shells on the sand that hold stories of the ocean’s mysteries drew me just as much as they always did.

Nature was always a balm for Michael and me. Immersion in nature is restorative. I think there’s plenty of scientific data to support that statement. Like the powerful feelings stirred by staring up at a thousand year old sequoia, or gazing at the ancient red rocks of Utah’s national parks, the brilliant sky and water made both of us feel the transient relativity of our existence.

Nature’s wonders proved critical in helping us recognize how much less important we were outside of our daily worries and issues, even one as scary as incurable cancer. Compared to the sensation of timelessness the natural wonders aroused, we felt tiny. We could stop worrying about disease and the future for awhile. Our days on the beach, looking out at a seemingly limitless horizon, elicited a psychologically healthier sense of well-being rather than the usual nagging fear and worry. Perspective is everything. For us, what we often found along the shore was always a comfort which usually kept us away from cities as destinations. During the five year course of Michael’s disease we went down to the Gulf twice, once to Sanibel Island and once to St. Pete’s Beach.

As soon as chemo or radiation ended, we went back to the beach. We hit the Atlantic and wandered the Outer Banks, that fragile shoreline which may slip away under the sea one day. Another journey to the water’s edge took us to Mexico, to the Pacific shore beaches near Puerto Vallarta, where the turbulent water, crashing waves and wind again reminded us of just how small we really were in this great big universe. And twice we made it back to Lakeside, Michigan, the site of many family retreats. On the eastern shore of Lake Michigan, with waves rolling in and a horizon that shrouded the cities on the other side, we could  conjure the feel of the ocean.

We are all little grains of life in the end, just passing through, like so many countless others who’ve come and gone. Michael is now physically absent but I’m still here to appreciate all of this endlessly beautiful and fascinating world. Big sky and brilliantly colored sunrises and sunsets. Moonlight shimmering and undulating clouds reflecting on the water, creating the sense of an impressionist painting. Anoles skittering around in the grass or up the screens of the lanais, foraging for snacks and somehow squeezing themselves through invisible small spaces so they are suddenly perched right above your head.

Thousands of shells and tiny rocks washing in with tides. Where did they come from? How did the little animals inside die and disappear, leaving their often spectacularly colored housing behind as a reminder that once they existed? The brilliant palette of the tropical environment manifests itself across a broad spectrum of trees, flowers, fish, and birds. The diversity is magical.

Standing in the midst of the largest ancient cypress tree stand left in this country and seeing the dazzling array of biota and fauna which abide in this sanctuary was profound. Given my anxiety about climate change and the fear that what I’ve been privileged enough to see in my lifetime might disappear, I found myself afraid to look away, afraid to miss something spectacular, something which might never happen again.  The older I get, the more aware I’ve become of not wanting to look away. When I’m out in the natural world, how do I know whether what I see will still be there if I get a next time? When will I ever have another chance to see the gulls with the yellow legs, or the terns with black streaks on their heads who mingle together on the shore or soar in groups and then dive into the water, popping up to bob on the surface? Or the pelicans who patrol the skies, looking as ancient as pterodactyls or pteranodons?  I marvel when they plunge into the ocean, resurface and swallow an entire fish in a gulp. What can they see and smell from up high?

One question leads to the next and the next. Instead of reading the books I brought with me on my trip, I found myself immersed in the internet, trying to learn more about what surrounded me. I learned about air plants which suspend themselves on the branches of trees. I learned that there are approximately 2500 types of palm trees that grow in southwest Florida. I have a favorite, the fan palm. But others are equally beautiful. I saw orchids hanging from trees like moss on the trees in a bayou. A visit to a local botanical garden was filled with eye-popping orchids and succulents. An itty-bitty houseplant in my climate towered above me at eight feet tall. The whole place was a sumptuous eye festival. A new intriguing sight every few feet. Being able to enjoy all this marvelous stuff really lifted my spirits.

But, as often happens, the reality parts of life slip into my more hedonistic moments and some of the joy diminishes. Long ago, when Michael and I were a few years into our relationship he told me that he’d figured out something about me that he thought was a bit of a drag. He said that he’d discovered that as long as I remembered that someone, somewhere might be having a problem, I’d get depressed. Over-empathy, he called it. I don’t think I’m that dramatic, but there’s truth in his perception. While I was busy enjoying myself and soaking up all the scenery and feeling all kinds of great emotions, I started to think of how unfair life is for  people without means. Those who live far away from places that are so beautiful and mind-stretching, locked in concrete, skies blocked by buildings, skies so discolored by pollution that they no longer look blue. Those people deserve a chance to be exposed to all this natural majesty.

Climate change is altering the planet at an alarming pace. Extinctions are rising as habitat is destroyed. While the wealthy sit on top of the heap and can indulge themselves with escapes, the poor are too busy scrabbling around trying to survive. 5b15ab2b-206d-44c1-8d2c-de50041f98c3Their world is narrow and lacking in the space to stretch out and ponder their place in it. My issues are first world issues. Though far from being wealthy, I have enough money to allow for the mental space to ponder what all this means. I have food and a roof and enough discretionary income to afford a plane ticket to southwest Florida. What about all those inner city people working three minimum wage jobs? Shouldn’t they have the opportunity to experience the natural world too? The glitter of sapphire blue sky and white beaches dulls for me when I go down this pathway. As it should. I start thinking about ways to tip the scales so everyone can have the same experiences. I know I can do little bits to help. But the big pile of problems rears its collective head even as I reflect on my own situation. Not exactly living in my moment. But then, would I still like myself if that’s all I ever did? The inner reflection continues…

Lament, Keen and Wail

b1a877d8-aae4-40f7-91ef-d128c49efc12Most of the time I do alright. But then there are those days. The days when my well-practiced coping skills dissolve, become dust and I am bent in half by my grief. Nothing rational exists in these times. I am brought low while simultaneously I rage and spit bile at the world. I lament. I keen and wail. Triggers are unexpected, stealthy. When they hit I feel primal. Primitive. Clinging to survival. I feel rage. I feel frustration. This wasn’t supposed to happen to us. 8e048dbe-008b-4335-814e-b688fba86eb0We were supposed to grow old together. Michael’s genes were supposed to carry him forward for decades. He was strong, fit, muscular, athletic. He was the beast. He could do anything. Anything but survive hideous Merkel cell carcinoma. The smack a bug disease that wouldn’t go away. That hid and lurked no matter how hard it was hit.3e1a172e-2341-410e-b8c9-d8a445cd92a7 I’m furious. Michael used to say that my rage and anger would be toxic for me. Look who’s still here? Maddening. So many stories stir up my sense of unfairness. A young friend visiting my home tells me about her parents’ unhappy relationship which finally ended in divorce. On a recent visit home, she saw her mother’s wedding rings for the first time – she’d never worn them. While listening, I look down at my own hand, wedding rings in place as if I’m still married. Which I am. I can’t imagine every putting them away. df32052f-8c0e-419f-9353-fc8a3e86aa85Another woman tells me that she feels like her husband is her brother. They’re good friends who sleep in separate rooms. Unimaginable. Michael and I were still in love, far away from being siblings. Why do they still get to share a life while we don’t?I hate the sight of old couples walking slowly together, holding each other up and I think, why you and not us? I tell myself that everyone has a partner but me and I know that’s a lie. I petulantly push the truth away. I have fury against those couples I know who have empty relationships that are habits instead of fulsome love and I want to say vicious things to them and make them hurt. I’m not a kind person in those moments but I don’t care. This is part of me. I want to use all my verbal skills to lash everyone. I am a relentless hater. I’m not fit to be with anyone when I’m in these rages. d2f01eef-158d-42e7-a857-66d96111cbccI had no idea that I’d feel this way. Michael and I would talk about my future throughout his illness. He would ask, “what are you going to do without me?” I would answer, “how the hell should I know?” Sometimes he would counsel me about how I should find someone else when he was gone. He didn’t want me to be lonely. He said I was full of life and energy and sexual drive and he wanted me to be happy.  Easy for him to say. bb319a69-aa04-4a99-bef8-a78b12601028His unimaginable burden was dying, disappearing, separated from life, and everyone and everything he loved. He was inside that mode, looking out at me. He could never have imagined the view of the one left behind. He couldn’t see my angle and the toll his illness had exacted from me. I’m not sure I saw myself either. The exhausted, damaged eroded one left in familiar surroundings that are permanently altered. I had lost so many people before Michael got sick. Cousins, best friend, my father, brother and mother. I carried those losses. Michael had never mourned anyone until he mourned himself. He knew that. Somehow, he cruised into his 60’s without ever experiencing the death of anyone he loved. He was estranged from his parents. His father died at 98 but Michael hadn’t seen or spoken to him in years. His mother is still breathing at age 96. They were unimaginably dreadful parents, not physical abusers but emotional ones. b5a6ce65-11cd-4646-a271-4bfe5538a88aMichael was the second of two children. He was never close to his sister. As the first born, she received the brunt of their brutal efforts to make their child into someone she was not. By the time they’d wrought their damage on her and turned to him, Michael had built himself an interior fortress to protect himself. No one got in there in a substantive way until we stumbled into each other in 1971. I could see him, the real him that peeked out of that hiding place and saw the magical self that he’d tucked away for safekeeping. An unrelenting hunter and prober, I spent a lifetime pounding away at those walls and getting inside. That brought us gratitude and joy and also, my frequent annoyance. Undoing an unhappy history is a lot of work. I had armor too and the weight of painful times. He found his way inside me as well. Together we reconstructed ourselves, not without the occasional emotional lapse or battle, but for the most part, peacefully enough so we could shelter together against all that gets tossed at people moving through life’s unpredictable journey. 8b6f1d87-9548-407a-b3b8-a6ef4684f7e1I restored my protective iron when Michael got cancer. Except for him and my children and grandchildren, I kept myself guarded, focused on working frantically to help extend Michael’s life. When his last months came along, I had no real recognition that this steely resolve was all that was holding me together. My ancient self-protective device that somehow got me to the end. To his last breath, the last icy kiss, the last time he was taken out the door. And then came the recognition that all my efforts couldn’t undo the inexorable finality of his vicious cancer.8182c4db-d1c8-4a85-afa8-5939add140ac My armor is what remains, that and my memories of what Michael referred to as this glorious life we shared. And anger. And the feeling of being robbed. Right now I’m furious. I don’t want to find a new companion. I still want Michael. I don’t think I’ll ever live long enough to want anyone else. He’s only been gone 18 months. A speck of time compared to those 46 years we spent together. What could compare? I don’t want to take care of anyone again. I would make exceptions for my children and theirs. But aside from that, I have nothing left to give a sick, needy person. I gave everything I had to Michael. Truly, I gave more than I think I had. By the end, I was close to the deepest of flight responses. I didn’t think I could manage an extra ounce of patience, generosity or kindness. The love, though. I drew on it, though terrified I was making things worse for myself in the long run. I lay in Michael’s arms as we’d embraced for so many years. I would ask myself if I was crazy, knowing that cancer was eating his brain while we snuggled as if all was normal. It wasn’t normal. I decided to savor every second that I could get, thinking of the desert stretched out ahead of me, sere and endless until I’m gone. I know he felt comfort, despite his fear and confusion. That means something. And now I remain. Mostly alright but aware that the days of lament, keening and wailing are far from over. a52dad21-f44a-400f-9372-72c70362c87aMy mother outlived my father by 25 years. She never entertained the notion of a new partner. I know she cried alone, only occasionally loosening her emotional control during daily life. But she missed my dad mightily and wistfully spoke of all she’d done without him, of all the events he’d missed. As I sat at her bedside while her life ebbed away, she was agitated for hours. 8cecbdc2-7d99-44a6-9ce9-b261d6304b75Eventually she grew calm. That last night, her eyes never closed. As we sat in the darkness, I watched her move her arm in front of her, as if trying to peer through a thick fog to see something shrouded just ahead. I’ll never know what that meant. Was it reflexive? Was she actually looking at someone or something? Of course, I like to think that my father was waiting for her out there in the universe. That eventually those two who moved through life like conjoined twins would eventually find each other on some other plane. That hope, despite my mother’s most frequently voiced concern that dad was chasing Ava Gardner through eternity. Still jealous of a movie star who’d been dead for years.  Maybe Michael has caught up with his movie star, Greta Garbo. Hah! In my heart, I believe that if there’s any way our energy can reunite that’s what will happen.

Today as I got ready to fly away for a vacation, I wrote him a quick note to say that if anything happened to my flight, I expected to find him waiting for me, ready to resume whatever we were for the rest of time. But now, my plane is landing. I guess I have to keep waiting until my anger finally kills me. Or something else. Who knows?7666532a-60b1-47d2-99fa-dbc0f72fd59c

2018

1B60D9D8-4AA8-4A0D-A4DF-C297E6BB7EC8One year ago, I took a leap into the blog universe. I had no idea what I was going to say. Turns out that mostly I’ve been sharing my most personal thoughts and feelings as I sort out being partner-less for the first time since I was 20 years old. I know some of you who’ve gone along with me on this road, while others of you are total strangers living thousands of miles away from me. The truth is, writing has been great tool for analyzing  myself and I’m grateful to those readers who’ve made me feel I’m not howling into the wind.C0AEB435-5B39-4550-B140-FF5E4C5091F0

I thought I’d start this year’s entries by writing a list of the thoughts, moments and experiences that stood out for me in 2018. So here they are in no particular order of importance.

1) I’ve been surprised to find how comfortable I’ve been, living in my house amongst all the memories my family and I have built here for more than 40 years. I know several widows(I hate the word “widow”) who moved out of their houses not long after their spouses died. I am content in my space and in fact, take pleasure from the difficult-to-define positive feelings that emanate from the walls. I remember being aware of its good vibes all the way back in 1978 when we first moved in here. In any case, I’m going to keep hanging around here, until I absolutely can’t manage it.29C21134-C70A-425B-AAF7-6EDA1931DF10

2) I accept the sense of Michael being in and around me all the time. I don’t understand it and find that I puzzle over the depth of our connection which appears to defy even death. Sometimes I feel like I’m in a sappy romance song about love. But I can’t deny the buoyancy of our connection that lifts me on a pretty regular basis and which feels exactly like I felt when he was here in the flesh. I have no rational explanation for this. Maybe I’m doing the conjuring. Maybe not. Maybe we don’t have the technological expertise to explain what falls into the category of sixth senses and other cosmic happenings that are so surprising. Maybe one day, certainly long after I’m gone, there will be concrete evidence of what this stuff is and why it happens. All I know is that it feels pretty good and that it’s not just about Michael. My mom is also flitting around me regularly. And the other day, I was hearing my grandmother asking me for a little bread in her native language. Whatever. It is what it is.

3) I always know that ultimately, I’m really lucky. I can look around me and see people who are so much more unfortunate than me every day. I have a roof over my head and I have food. I don’t feel threatened. I was and still am, deeply loved every day of my life. I have friends. I see something beautiful every day. Everything is relative. Thinking this way is about more than just surviving. To me, it’s a blueprint for living.

4) Fundamentally, I’m pretty healthy for a woman heading toward seventy. I’m glad that I live close to a pool where I can swim daily. This year I had two lousy root canals and a complete knee replacement surgery. The knee replacement was my first significant medical issue. I was able to leave the hospital the day after the operation and could walk around without assistance right away. I worked hard for that, getting strong before the event. Preparation is everything. I highly recommend it. I know that sometimes things can go wrong no matter what you try. But you can stack the odds in your favor. I believe that.

5) Nature is critical to my mental health. I’ve spent years developing my garden and trying to create habitat for the birds and the bees. It’s working out. This year I counted 26 bird species who visited my yard. Then there are the ones I can’t identify. When I pull up in my driveway, the ground around my home is alive with movement and sound. The therapy these creatures, along with the flowers and foliage which sustain them, provide me hours of pleasure. One day I want to be part of my little piece of earth that’s given me and mine so much joy. I planted a beautiful kousa dogwood tree this year. I’m hoping it thrives. When it matures, it’s draping limbs wouid make a lovely sheltering resting place.

6) This year I was able to travel. I went on a vacation to North Carolina and the glorious Blue Ridge Mountains. I went with my daughter and her family. We got along so well, despite the challenges of some crummy weather and the needs of active little boys. How great is that?

I also took a 6 day road trip to Cincinnati to attend the Western Southern Open Tennis Tournament to see my favorite player, Roger Federer, in the flesh. I’d never been to a professional tournament. The weather was shockingly hot and my knees throbbed but it was so glorious to do something I never thought I’d do.

I fact, it was such a great experience that I bought a ticket to the September Laver Cup at the United Center in Chicago and saw him again.

I have unforgettable memories and I was so glad to be independent enough to experience these events on my own. An important milestone for anyone used to being in a partnership. Standing alone and navigating new territory, totally reliant on your internal resources is empowering.

7) This year was my 50th high school reunion. I played a significant role in planning it although I no longer live in Chicago. I was so pleased that it was a well-attended and satisfying event. I was moved by the powerful connection people felt to our shared past. I made contact and kept it with people I hadn’t seen for years and stimulated others to build friendship groups that are now meeting regularly. Lots of work, but the fruitful kind that feels good when it’s over.

8) I’ve begun listening to entire albums again, rather than selective playlists of favorite songs. When I was young that’s how I heard music – even today when I hear a song from a well-known album, I’m always waiting for the next tune and am surprised when it doesn’t play. I think hearing what an artist or group puts into an album provides a deeper insight into their creative process. It’s working for me.79B0ECDF-DA7B-4FA5-9A0A-21407A0AF13E

9) Last year I began an unexpected foray into the world of painters. I never had any formal art education but I had a cursory knowledge of many famous artists and have my favorites. I’ve always loved Claude Monet’s work and while browsing through books, I found one called Mad Enchantment, the story behind his famous Water Lilies which he began at age 75. I loved the book title which accurately reflects my internal obsession of endlessly trying to understand my feelings for Michael, which somehow feel even deeper and more connected to him than they did before his death. I still can’t adequately describe what bound us together but mad enchantment struck a deep chord in me. While reading this book, I was introduced to lesser known artists, most of whom were new to me. My curiosity was piqued. I started looking them up and one led to another and another, crossing time periods and genres. Given the ugliness of the political climate in so many places, I decided to post a painting a day on my Facebook page, along with photos of birds, waterscapes and landscapes to share a little wonder. Two nights ago, I counted them and realized I’d shared the work of 79 artists in 2018. I was surprised and pleased. This offshoot of my inner examination is a keeper – I’m going to continue to explore the many brilliant painters from then and now, hoping that my social contacts bear with me and enjoy the journey.

So those are my 2018 highlights. In 2019, I expect to continue my interior journey along with a few external ones that will take me away from home. Thanks to all of you out there who are going to stick around for the ride. E40B1FBE-D300-458D-A479-99907236591D

 

To Do

C858FA34-EFD4-4AA9-9AF2-0FCD19084F08Last night as I lay in bed I started re-reading One Hundred Years of Solitude. I was delighted that I was fulfilling a promise I’d made to myself. Years ago, revisiting this book made my “desires” list, the list of things I wanted to do before I die. While turning the pages, a  few long-forgotten dried maple leaves tumbled onto my chest. The leaves were a bonus. I don’t know if they were my talismans or those of my family, all of whom I’d pushed to read this book that changed the trajectory of how I understood the world. They made me smile. They are perfectly preserved which somehow feels symbolic. They felt like emblems or markers of my mind broadening. B55E3F1C-78D7-42AB-8383-60ABB8FD69F0Marquez opened my intellect to magic realism and I burned my way through his books as well as those of other Latin American authors. Like traveling, reading books from other cultures stretches you and opens your thoughts to different ways of looking at humanity and their multitude of styles and customs that exist on this planet. I think it’s been good for me and would be helpful for virtually anyone.

A tiny part of me feels like going back to something I’ve already read is a waste of time, given all the “new”that’s out there waiting for me. My list of books that I need to read never stops growing. I feel frustrated knowing I’ll never get them all finished and that each day, so many new ones will appear. As a teenager, I remember feeling crushed when I read the statistics on how many books are published daily. My dream of consuming them all was one I had to abandon. But, despite that, there are a few books that I’m determined to experience one more time.

I concluded that one more time was worth it back in 2007. At that time I was approaching the 30th anniversary of my job. How very strange that I stayed in the same position while I knew that so many other people changed employment every five years or so, continuing to advance their careers. My job was a career of sorts. I didn’t plan for it and in fact had never even heard of it until I was in my late 20’s. A friend of mine was elected to public office, assessor of our city. She needed a deputy to handle commercial property assessments. I’d had a dreadful job managing 350 campus apartments for a company I loathed for its slimy business practices. That was enough for her. I quit that job which gave me a sour taste and soon began working with my friend. During my first year, I attended numerous classes and became a CIAO, the certified designation for assessors in Illinois. E3C7658F-4F4F-491A-A7A3-85098DAAC410Every year thereafter, I took thirty hours of classes and honed my skills as the chief deputy assessor. My job had a lot of impact on my community. Once the assessor’s office was run as a good old boy system. Our team came in and cleaned out the back room deals, upgraded the technology of the office and professionalized our work. We strove for fairness and equity and won the trust of the community. Nobody loves to pay their property taxes but they’re used in local budgets so people can actually see where their dollars go. We made ourselves accessible to the public. After two terms, no one ever ran against my boss again. So there was my career.76DF636F-1D86-4E31-BA6D-B66B65075FD4

I was never ambitious about the external part of life. I never sought recognition or promotions – I guess whatever drives people in those ways didn’t make it into my DNA. I had wide-ranging eclectic interests and was more interested in building a family than a profession. So I stayed in my job. I had great benefits, a wonderful boss/friend who gave me autonomy and flexibility based on trust and respect. The years flowed along. Work was work. I was proud of duking it out with corporations and arrogant attorneys. 01021F5D-4464-4B37-82E6-9D2FF1BEF1F8But I never had a vocation, unlike my husband who loved two careers and felt passion for what he did every day. I was a respectable underachiever. But work ate up a lot of hours. As time went on, I daydreamed, thinking about all the different things I could do if only I had the some extra minutes. Working, being a wife, a mother and a caregiver for my parents, took up a lot of time. Managing a household and my beloved garden, and having hobbies and interests sucked up whatever spare moments existed. If only sleep wasn’t required.

Back in 2007, anticipating retirement a few years down the road, I started carrying a small notebook with me every day. When I found myself thinking of one of those no-time-for this things, I wrote it down. Eventually the list grew long. Cooking new recipes, reading new books and returning to old favorites, listening to music I’d never heard, began filling my little pages. Sometimes I’d read my little green book from start to finish and find that I’d written the same thing several times. I figured that when I got my chances I’d start with the duplicates first. Of course, life has its way with all of us. Known in my immediate family as the itinerant lecturer, I regularly advised myself that the people with the best lives are the people with the best coping skills because coping is required of us all. And there were those inevitable unanticipated curves. I did actually retire at the end of 2010.

But instead of retiring into relaxation, I became the caregiver for my daughter’s first child. I was happy to do that because I remembered how anxious I was as a new mother, having to leave my infant with a stranger, an infant who could never tell me anything about what happened during the day. I started caring for my little grandson when he was 7 weeks old and stayed with that job until he was almost three. My work hours were long, the adjustment to being a stay-at-home surrogate parent was a challenge and I was bone tired every day. I wouldn’t have traded a minute of it.

My mom became an additional dependent the following year, moving in with us as her ability to live alone diminished. The next year my husband was diagnosed with cancer. So much for the little book of desires. I passed the 115 mark on the list. I think I scratched off a total of  three items before life consumed me and thoughts of dreams receded into the background. For the next five years, my focus was survival mode which covered a lot of turf. I wanted to keep my commitment to my grandson and his parents. I took care of my mom as best I could until it was clear that three needy people was beyond my ability. Mom went to assisted living and eventually died in 2015.

My grandson was ready for day care at just about three and made a great transition which left me feeling gratified that I’d fulfilled my promise to keep him safe, happy and interested until he was ready to be in the pre-school world. The next use of my time converted to trying to help Michael live as long as possible, with high quality life experiences. I became a researcher, leaving nothing to chance as we explored every treatment option to keep him alive. And when we caught a break, we stuffed as many retirement type activities as possible into what we knew would be a limited future. We hit the road and traveled to beaches and national parks.

We kept our balance by immersing ourselves in nature which helped us recognize how tiny our lives really were compared to the majesty in front of us.  My little green book was trounced by the desire to squeeze as much joyous life with him as I could get into whatever we had left ahead. And we did.

Now he’s been gone for a eighteen months and I’ve turned my attention back to that tattered to-do list. Slowly, I’m working my way through it, trying to be mindful that despite all the unexpected twists in my road, I still want to do all the things I pined for when I was too busy. I don’t want to squander whatever time is left for me in this life. I’m not intending to race my way through Marquez. I’m going to read each page slowly and absorb the marvelous imagery and the fantastic characters that captured my imagination 44 years ago. I’m going to feel everything I can. After all, that was the point. Unexpected challenges didnt erase what drove me in the first place. I will read, I will write, I will organize and I will travel. I’ll enjoy my friends and family. I’ll continue unearthing the history of my home and my family tree.   I’m still here, chasing the little dreams that make me myself. And I’m keeping the promises I made to me. As a friend recently  said, you’re living large. I’m trying. 3347A1B4-D12E-469E-A5B3-AD030856496E

Music Head

3ED2E6A8-A77C-48C9-9FF6-092214C273BAI wish I could study my brain. Or have someone else do it and explain how it works. I mean in its entirety. What a complicated organ. Our own personal CEO. Zipping along and controlling what are seemingly infinite functions, many happening simultaneously. Dozens of scientists are out there, doing their best to pin down just how all the actions going on in our heads are integrated and what makes us the same as well as so very different.17770C40-4840-4B52-9FB0-7478A277F6E5

I’m busy thinking about my relationship with music. Was I pre-programmed genetically to be a music receiver? Or did it come to me from my family first, and then get reinforced by my cultural environment? When I was growing up, I never played an instrument. I never took music lessons. But there was a lot of singing. My mother sang all the time. I learned the songs of her girlhood. Some were in foreign languages, others were from movies, and many came from whatever music people were dancing to in the 1930’s and 1940’s. When I went to elementary school, we sang lots of songs. I remember singing about the Erie Canal and Old Man River. Rounds singing occupied class time. Row, Row, Row Your Boat and Three Blind Mice come to mind. We started harmonizing a lot in 6th grade. Our music teacher was Miss Macaulay. She seemed ancient and was deaf in one ear. We mercilessly crept behind her and shouted as loud as we could to see if she could hear us. Another grade school teacher named Adrian C. Hartl, often played his violin to us.10D22900-0A79-4FEB-83F0-D4DD1AE916DA

At home, we sang at almost every family gathering. We’d eat our dinner and then all sing together,  little kids through grandparents. We sang “You Are My Sunshine” and “Tell Me Why,” not the Beatles version. We sang “Swing Low, Sweet Chariot.” I always loved those times. Despite any problems, of which there were many, the singing connected everyone and was comforting. One of my dearest old friends told me that my family was the only one that spontaneously erupted into song during the course of a normal conversation. Music was the undercurrent of our daily life.2B8857DF-9256-45CA-9DFE-EBBFF685DC0E

One of my most vivid memories was being about 5 years old and accompanying my sister to S. S. Kresge’s store which sold 45 rpm singles. She was buying Hound Dog by Elvis Presley, her music idol. Less than a decade later, I was scrambling for every Beatles release. I think all four kids in my family felt music similarly and leaned on it as a stress reducer. I’m still doing that.

By the time I was an adolescent, I had a small transistor radio. At night in bed, I held it to my ear, waiting for the top three songs voted by listeners and played at  10 p.m. on WLS in Chicago. Then I could go to sleep. I had a pen pal in Liverpool who told me about the Silver Beetles, the precursor name for the Fab Four. She called them “boss” and “gear” and I felt so sophisticated and European. I couldn’t get enough of The British Invasion, which augmented my love of rock and roll and soul music. At the same time I was listening to lots of popular music, my dad bought the family a portable stereo. I listened to vinyl which he brought home as promos from the store where he worked. What an eclectic assortment. I liked classical music by Mossourgsky and Tchaikovsky. I loved Bolero, even though my educated aunt told me I’d outgrow it down the road, when more depthful compositions would become  accessible to me as I evolved into the grownup world.  I listened to Mahalia Jackson and Mantovani, Dave Brubeck and Vince Guaraldi. I loved all the folk singers too.  Basically there was virtually nothing I didn’t want to hear.

In high school, I sang in mixed chorus. I remember our conductor, Eugene Pence. Everyone thought he was having an affair with our accompanying pianist, Margaret Lundahl. The high school gossip mill was in high gear. When we practiced scales we had to put our fingers in our mouths and get big sounds out while not letting our teeth or lips touch them. Going to that music room was a wonderful break from the academic grind. I can’t imagine school without music.

There was lots of dancing too, at home and everywhere else. My mom said she always wanted to dance and she was very good at it. We danced with her all the time. She taught me everything I know about dancing and was a great partner. We kept up those traditions through our lives together. We waltzed, cha-cha-ed, jitter bugged and twisted. My sister and I made up line dances that we copied from American Bandstand, Hullabaloo and Shindig. I could never sit still when music was playing, no matter what type it was. I’d go to concerts and see people sitting perfectly still and I felt completely alienated from them. How could they just sit there? I always believed there was something missing in them, although I don’t know what that would be. Was it a social constraint? Embarrassment? I have no idea. All I knew is that music elevated my spirits and made me move and I never cared about what anyone thought of me.

Lately,  I’ve wondered if there was any way to count how many song lyrics I know. They pour out of my head without having to think about them. They’re just stored somewhere in a mysterious spot inside our brains  and when triggered by a note, out they roll. But there’s more to this for me, more than the aural sense. My one note of so many different songs stimulates a whole other kind of response that’s a complicated visual and sensate experience. It happens with lots of music on a very regular basis. I wish I knew why. I am transported to a place which I feel like I’m physically occupying. I can remember my clothes worn at the moment I heard the song, the smells and the touches that accompanied the experience and most importantly, I experience my emotions as if I’m in real time.215FEF9D-4A95-4B38-838D-158AC1B993A5

Of course, there are countless songs that I associate with different people. They evoke my mother and father, who sang to me when I was growing up. I see them sitting next to me at bedtime and have strong visceral sensations that are simultaneously in my head along with the sounds. There are the songs I shared with my friends, countless ones with my friend Fern who lived the Beatles with me. We changed the lyrics to many of them for fun, so they’re doubly evocative. My younger sister is in those scenes too. There are songs that transport me instantly to a moment in time, where I’m embraced, upset, romantic and wistful. So much music is connected to a specific person and I am suddenly where we were when we were listening together, and I can feel how it felt then, and smell and touch them. I am in apartments or in cars, sometimes in daylight and others times in the dark. Truly, it is often disconcerting as I seem to exist simultaneously in separate planes in time. How can that possibly be true? What’s going on in my head that makes these vivid encounters jolt me into any place, at any unsuspected moment?1C684E44-C447-4D93-AA13-D87792F65373

Having spent so many years with Michael, our personal soundtrack is practically constant. Most of the time I’m good with that and find the associations uplifting and sustaining. I can be in the Fox Theater in St. Louis listening to the Grateful Dead or at the Quiet Knight listening to Robert Palmer at the beginning of his career. Or we are sitting at Soldier Field with Mick Jagger just feet away from us as we sat in the second row. I think we saw almost 300 concerts together. And that doesn’t begin to touch the hours we listened to music at home, album after album uniting us in memory. At the end of his life when he felt confused, I could play our special tunes which reached into him and brought him back to our space. Just like magic. We both enjoyed classical music and attended many shows at our excellent performing arts center. The first time I attended a concert there after he died I was very anxious about being emotionally overwhelmed by the feelings the music might evoke. As I sat that night and listened, I suddenly realized that I began feeling as if I was inhaling Michael, that every breath I took was filling me with his essence. This sensation has repeated itself on multiple occasions. I can only describe it as joyous, feeling him occupying part of me.6E7CC77C-871C-4AF8-93C2-B49780B3DF70

I want to know how this works. I’d like to be able to have some control over it. I know that music therapy is being used to deal with a wide assortment of medical issues from autism to Alzheimer’s. I try imagining what it would feel like to have executive function over all these random responses. Rather than being taken off guard, how could I control them and use them in a productive way? I think we’re decades away from understanding these functions. But I also believe there’s a universality to them, perhaps not as enhanced as mine seem to be, but certainly a commonly experienced phenomenon. Like comfort tastes and smells that transport you to happy memories, so the musical tracks laid down in our brains are there for a reason. I dream of figuring it out while knowing I can’t. So I sit here, inside my own private movie with a soundtrack. At least I’m never bored.587ED7C5-C213-4AD0-9B99-FE0BDD2E203C

Parallels

 

1718D660-F6E8-4C1A-932B-4BCC84494183Certain years of your life stand out from the others. Months and months can go by, with one day melting into the next. Maybe at times that feels stale or boring. For me, I think those times are often the best ones, when nothing special has happened, nothing to make the ground beneath your feet feel unstable and shaky.

 

One of my most intense years was 1989. The previous two were marked by personal tragedy. In 1987, my cousin committed suicide. He’d been troubled since his mid-teens. Our families were very close and although I knew his situation was dire, I don’t think anything can ever prepare you for a young person choosing to die. I attended his funeral carrying my young son. The grief of my family was spread over my shoulders. The following year, my oldest friend, who’d borne terrible emotional disturbances during our entire relationship, killed herself too. Her death was two weeks before our 20th high school reunion. I attended the event but was devastated and moved like a ghost through the living history around me. I was inconsolable. I dreamed my way through my grief. I would be at the high school reunion again, but it was in a different location. People knew I was suffering and suddenly I’d see their faces change and I knew she had appeared. I turned around and saw her, wearing a red sweater which complimented her dark hair and olive skin. We went rushing to each other and I reached out for her, only to feel her whoosh right through me and vanish. I took this as a message that she was better off gone. Those two events are the prelude to 1989, the year that tilted my world on its axis, to forever rotate differently from the way it did from the time I came to call “The Before.” This was the first of two cataclysmic sections of my life.CBEA4E7B-2950-45D9-B8ED-EC420FE1233A

Michael and I started out 1989 with a plan. Four years earlier, he had run for alderman in our city, against a classic caricature of a corrupt good old boy incumbent who’d spent years in office. I was his campaign manager, completely inexperienced, but game. We ran a good campaign but didn’t have much going for our “Get Out the Vote” plan. Michael lost that election by 2 votes. That sting was still fresh as we heated up for the election season in January, 1989. I was reprising my role as manager, a more experienced and streetwise one. Michael had raised his competitive level and resolved to meet every voter in our ward.583859B0-4E52-4CB3-821A-AA0EFE1D87E8

We were really busy. Both of us had full-time jobs and two kids who were seven and two. My parents had moved to Urbana from Chicago two years earlier to join us and my younger sister. I was the precinct committee person in our jurisdiction. Life whirred along quickly during the late winter and early spring months. Michael, who’d been having back pain on and off for a few years from his relentless softball career, marched through it, going out every night after dinner and taking our daughter with him on weekends to knock on doors. I was organizing our team of volunteers, combing through lists of registered voters  and still nursing our baby boy. But we were in our late 30’s and full of Michael’s campaign slogan: Energy and Commitment. This second campaign resulted in a victory on April 4, 1989 and the whole family attended Michael’s swearing in at the City Building in early May.D50E77FD-07BE-4A7D-85D9-313C928E4C78

Our celebration was short-lived. My mother was diagnosed with breast cancer in mid-May. She had surgery 2 days before my birthday. We were all scared, but she came through it, despite other significant health issues. The first five months of that year were really intense. 9427A6D1-D1AF-4726-8EB5-019E6DB7B6EA

In June, Michael and I took our kids on a one week vacation to see his parents in Florida. The trip was rejuvenating but when we returned, my dad picked us up at the airport and told me he’d been urinating blood. My mother was a scant month past her surgery. Dad was diagnosed with bladder cancer metastatic to bone shortly after our return.  That meant both of my parents were struck with cancer in 5 weeks. My mom continued to recover as my dad began to decline. In the meantime, those long months of door-to-door campaigning, coupled with too many bat swings caught up with Michael. He began to suffer from severe back pain.253CA3D8-9C05-41FF-AF70-921C99E7DBA5

I chased around from one thing to the next, changing drains in my mom’s incision, driving my parents to doctor’s appointments and eventually dad’s chemo treatments, taking the kids to school and day care and feeling a sense of fear that was hovering constantly. As the summer moved along, dad was getting sicker, and Michael, who’d been diagnosed with a herniated disk, was in dreadful pain. I wound up sleeping on the floor to give him room to search all night for any comfortable position. To top off the chaos, we were having a new roof put on the house, supposedly a week job that stretched into months. Fighting with the roofers about the messes they’d made and getting them to clean up their detritus was my escape valve. Someone I could yell at to vent the agony of trying to hold up too many people.

By late August, Michael could barely move. My father was admitted to the hospital suffering from dehydration. Two days later, I told Michael his situation was unsustainable and drove him to the ER to be admitted for surgery. As we waited for a room for him, I took him to see my dad whom he hadn’t seen in weeks. When I wheeled him into dad’s room, Michael didn’t recognize him as he was so changed. Michael’s surgery was the next day and was a great success. As he rested in the hospital, school started for my daughter who was entering second grade. The first day was only a few hours – she would go to my neighbor’s house for the remainder of the day. My son was at day care. I was mercifully at work, trying to feel normal. That day there was a dramatic storm with lots of lightning. I was sitting at my desk when my neighbor called and told me to stay seated. I was terrified that my daughter had been hurt in the weather on the way back from school. Instead, she told me that lightning had struck a hundred year old tree in front of my house which flung limbs through our brand new roof. I rapidly drove home to look at the damage, noting all the city workers gathered in their trucks, ogling the disaster at the alderman’s house. As I stood staring at the mess, I remember thinking, “so this is the  metaphor for my life – the sky is truly falling.” I drove off to the hospital to tell Michael what had happened before anyone else could.

Both Michael and my dad were released from the hospital within two days. My dad’s birthday was on August 1st and we decided to celebrate it, knowing that it was likely his last. He was turning 67.

 

At the time, I remember telling myself that I wished he’d be around longer, but that he’d had a good life, a happy marriage, children and grandchildren, the whole deal. But he was devastated. He cried at his party and my wise and brave little daughter went up to him and asked why he was crying. He told  her he was sad because he was going to miss us all so much. She looked up at him and said, “Grandpa, you’re right here, right now. You should try to be happy that we’re all still together.” She was positively profound and exactly right. My dad was so close to my babies. We were all so sad.

 

After that event, his decline was swift. Each day he was diminished. My daughter was cognitive enough so that we could explain things to her. My son was too young. He knew something was terribly wrong but he didn’t have enough language to express himself. I remember him bringing his favorite cup to my father as he lay in bed. He hoped that somehow, his grandpa would get up and fill it for him. As my dad became progressively more ghostly, my daughter would delicately climb in his lap and he would mutter the words to a touching children’s book, Love You Forever, while the adults watched and wept. Dad died on September 25th, a month after my daughter’s 8th birthday. She understood that he wouldn’t come back while my son must have been mystified at my dad’s disappearance. The primary ramification of dad’s absence for him was relentless sleeplessness that continued until he was old enough to express his fears of closing his eyes at night and being alone. At last we had something to work on to help him recover from his inexplicable loss of a constant presence in his life. My life had changed forever – my children’s lives had as well.

Inexorably, time moves on. We either go with it and get with the program or not. Some of us bend and adapt and others get brittle and break. I was flexible and moved forward, different, looking at life through the new lens of mortality and vulnerability. I got deeper in almost every way. I tried to shepherd my children in a healthy way, help my mother and treasure my time with Michael. I always thought that I would die before him based on our genetics.

 

So daily life ultimately resumed. Subsequent years were full of average days and normal crises that are to be expected by just being part of the human experience. In late 2010, I retired from work to care for my firstborn grandson. Every day, from the time he was 7 weeks old until he was 3, he came to grandma’s daycare. Within a year, we moved my now elderly mother into our home as we felt she was unsafe on her own. Four generations were under our repaired roof, as our son migrated up and back between home and his PhD work abroad in Central America. Life was hard work but essentially good.

During the years following my dad’s death, my husband had left his music business of 27 years, returned to school and acquired a master’s degree in the teaching of U.S. History. He was one of the lucky ones who enjoyed two careers that he really loved. But teaching was his true vocation and he knew his career wouldn’t be long enough to satisfy his thirst for the job. Starting over in your 50’s is a challenging task. He worked long hours, perfecting his classes and developing one that combined his love of music and film in a course that encompassed critical movements of the 20th century. He was at school every day by 7 a.m. and returned around 4 p.m., unless he was advising or mentoring. As a man in his 50’s and 60’s, these were long hours. He was happy to come home and see our precious grandson at the end of his day. Often he’d lie down for a short nap and as little Gabriel became more mobile, he’d curl up next to grandpa, and bring him his favorite stuffed duck to hold while he slept. Michael adored him and really liked the duck as well.

 

Then the second cataclysm struck. Michael was diagnosed with Merkel cell cancer in the spring of 2012. We learned quickly what a lethal disease it was and got prepared for the surgery and subsequent treatment he needed after getting our second opinions. I had an impossible time assimilating the idea that Michael could be gone before me. In addition, we struggled with my mother, who was unable to understand why Michael’s cancer was any different from hers which had proved eminently survivable. Ultimately we moved her into assisted living as the demands of dealing with Michael’s disease along with those of a baby and an elderly person got too unmanageable for me. The first year after diagnosis it appeared that Michael’s cancer may have been caught early enough for him to survive. But in November 2013, a scan showed widespread metastatic cancer. We’d sent Gabriel off to daycare that August. My daughter was pregnant with her second son. Michael’s prognosis was 2-3 months, absent treatment, and perhaps a year with chemotherapy. We were all devastated. One of our most intense issues was trying to protect Gabriel who was about my son’s age when my father died. We were terribly worried about him and were also afraid that Michael wouldn’t meet his next grandchild.

He and I would lie together at night, clutching each other  and talking about the impossible future. Both of us wanted to help all the children, even as we bent under the weight of the knowledge that the long life we’d hoped for wasn’t going to happen. The parallel with my father’s fate wasn’t lost on us. When things felt too dark he would often say, “ when things get bad for me, bring me Gabriel’s duck to hold. It’ll make me feel better.”

We rode the cancer rollercoaster for the next few years. Michael lived to see Tristan’s arrival in the world. His health ebbed and flowed but in the good times, he and Gabriel spent lots of time  together and had great fun. Gabriel got old enough to talk about Michael’s illness and to understand more. When he was at our home, he frequently sat on Michael’s lap with the duck, playing with his grandpa’s pocket watch which fascinated him with its bright red light that he could flash on and off. Little Tristan seemed unaware of what was happening – at least we hoped so.

 

Michael outlived his prognosis, but  he was seriously ill in 2015. In April of that year, my older brother died. Michael was hovering at the edge of death when we suddenly acquired an immunological drug off-trial that pulled him back from the brink. He was still very weak when my mother fell and broke her hip, dying shortly thereafter in July,    2015. Two powerfully impacting deaths in so short a time. I was thinking back to 1989, the year my father died at only 67, with 2 deaths preceding his. Michael was the next in line. He was 65 in 2015. I realized how foolish I’d been to believe that my dad had enough life. He’d missed so many marvelous experiences, ones that my mother enjoyed without him, although she missed him, always. I knew Michael would miss so much too.

His comeback lasted for over a year. But in January, 2017, the impossible Merkel cell reared its head again and this time, almost 5 years after diagnosis, I knew we were at the end.

By this time, Gabriel was approaching his 7th birthday. He was keenly aware of the decline in Michael’s abilities to share experiences with him. He would say things like, “there go my bike-riding lessons, there goes my swimming.” In the midst of my own pain, I was frantically trying to think of a way to help him.

As Michael’s disease progressed, he wanted to spend time with our grandkids but sometimes their energy level overwhelmed him and he would be verbally snappy. We talked about it and he was able to understand that he didn’t want to leave a negative impression with the boys at the end of his life. One afternoon he apologized to Gabriel and wept. Gabriel’s unforgettable response was, “ I know you didn’t mean it, grandpa. The cancer corrupted your brain.” Just like his mother.

As I grappled with my own pain, my children’s pain, I saw the similarity in the effects of Michael’s decline on our two grandsons that I’d seen when our kids were the little grandchildren. Gabriel was like my wise little daughter and young Tristan was like my too young son.

I talked with Michael about doing something for Gabriel while he was still alive. We agreed that giving him the pocket watch would be the best thing to do. Michael was a little confused but managed to pull off handing a gift bag to Gabriel containing his coveted red flashing watch. Gabriel said, “I never expected this -it’s making a memory. Such a profound moment.

When the end was coming close, I gave Michael the duck he’d asked for years before when we discussed his death. He held it while he slept just as he had during the after school naps.

 

On the day he died, the family gathered at my house. Gabriel asked for the bandana Michael wore during chemo and the one he donned to imitate his beloved grandfather. I washed and dried the duck and told him it was his again. He looked at me and said, “grandma, you need the duck now for company. Please keep it.” I was so moved and indeed, it’s been on my bed every night since Michael’s death. Michael was only 67, just like my dad.

The two stunning periods of loss that happened in 1989 and 2017 changed my life course. And those times changed everyone close to me in this life. I don’t go too far down the road any more. I don’t want to search for the third time my world can be rocked. But until my mind fades, I’ll always remember when my innocence was truly lost and my struggle to make things easier for all the littles, the children I’ve loved. I hope what I did helps them as they navigate their own cataclysms. And the duck remains in my bed. E3FD6B16-A1BE-4C20-99B3-A55A364B0329