October 24, 2022 – I have finally finished the re-sharing of Be 278 – A Cancer Journey. I’m glad I dragged it out of myself and that I republished it in the order it was written on this site. Reading it all made me cry at the end. I guess that means I wrote what was real and powerful. I’m still a caregiver, despite the fact that Michael isn’t here. My most natural instinct is to provide care. I thought that might have disappeared forever but that didn’t happen. Not much else has changed about my deepest feelings. Michael was a one-off for me – I will live out my life on my own. I have no desire for further partnership. I remember Michael’s desire to stay alive every day. His tenacity informs how I live now. In as full a way as I can muster. I don’t think most people have been as lucky as me in reaching such a powerful coming together of two separate individuals. On my worst days, I always remember that. Forever is real.
“Maybe I’m Amazed” – Paul McCartney
Of course I can only speak for myself. I’d turned 65 four days before Michael died. Nothing, not the grief, the anxiety, the fear, the fatigue, the terror, the love, had made me forget to do the management of getting myself on Medicare and a supplemental insurance plan. I’d also taken care of organizing all the documents I’d need to separate my beloved husband from the bureaucratic details of his life. All that was missing was his death certificate. Life, at least mine, had prepared me for how to do these things that so overwhelm people in their most dire moments. I’d had more than my share of illness and death, up close and personal, since I was a little girl. I started being afraid of death, of being alone and abandoned, when I was about four years old. That’s the demarcation point from feeling safe, when I’d remember my mother’s first lengthy hospital stay, which unnerved me so badly that I was terrified of leaving her for school, always worried that my regular teacher would be absent, and that when I returned home, mom would be gone. I wrangled with those fears all through my childhood and had plenty of practice surviving losses from the time I was twelve. Deaths of a baby cousin on my twelfth birthday, family suicides or attempts, along with the loss of my grandfather happened by age eighteen. Then mom, who’d stayed unhealthy most of my life got cancer. She survived, but I was really insecure. My emotions were too big and unmanageable. Somewhere along the way I developed an intellectual override skill that allowed me to transcend that internal chaos so I could function. My gift and my curse. I was often observing my behavior while I was in it, like a reporter at the scene of a crime. Fortunately, the ability to detach didn’t destroy my ability to be fully engaged, though, making me a curiosity, even to myself. Michael came along when I was twenty. Longevity seemed to be the genetic legacy on both sides of his family. I felt lucky to have fallen madly in love with someone who’d cry at my grave. As they say, the best-laid plans…
Mom and dad both got cancer in 1989. She survived hers while dad’s disease progression was only three months long from diagnosis to death. I was thirty eight. Dad had a simple world view – you were born, you grew up, married, worked, had a family and died. He was only sixty seven when he disappeared. Back then, I thought that was a full life. Fast forward to 2017, when Michael died at the same age. Those ensuing years had significantly changed my perspective about lots of things, most especially what “old” meant. In 2011, my kids threw me a huge 60th birthday party, so well-attended that I had to help them pay for it. A multi-generational event, I still felt young, vibrant, well-loved and deeply ensconced in a diverse supportive community. A scant year later, I was facing the probable loss of my seemingly invincible partner, diagnosed with an orphan cancer, rare and virtually always lethal.
During those next five years of cancer life, Michael and I grew closer and more intimate than ever. Always aware that his clock was ticking away, we were determined to squeeze as much time together as possible into whatever we had left. Our world got very small as we focused on each other and our family. We traveled when we could, sharing special experiences and making memories for me. We lived through some terrifying moments. When things improved we proceeded with our plan. During that time, my mom, my brother and my dog died. I became estranged from my older sister. In quiet moments, I’d ponder my future when Michael was gone. But except for notes to myself, relegated to the silence of my journal, I pushed straight ahead. During the last four intense months of Michael’s physical devolution, however, staying in the present became more and more challenging for me.
March 17th, 2017 – Here I am degrading by the day. I have no life. My body feels dreadful. What is a reasonable length of time to keep trying? For both of us? March 21st, 2017 – Sometime it’s all I can do to keep my head from exploding. March 24th, 2017 – My heart is so broken. Too much loss, too much loss. Will I just die? Anything is possible. March 30th, 2017 – Will I ever have a life of my own again while I’m still healthy enough to enjoy it? Another trip? Another class? No clue. April 13th, 2017 – Lying together in our bed although I’m so afraid, of now and the future. Thinking of being sad, being lonely. Trying to imagine the emptiness of future holidays. A big blurry future. April 17th, 2017 – Thinking of the future as little as possible, but still. What will my life be like? How many more years do I have? Will I be able to travel? How will it be to function by myself without the cushion of knowing I have someone just for me? April 22nd, 2017 – Michael and I always wanted to take a long train trip. We never made it. Will I do it on my own? April 24th, 2017 – Life is passing by. I live in tiny chores. I know I’m doing the most significant thing in my life. But what about that train ride? A new city. A beach. Anything but here. Just for a little bit. May 14th, 2017 – I’m exhausted. I feel ill. How will I get through this? What’s on the other side? May 16th, 2017 – How will I re-enter the world? Hello everyone. I decided to give over my whole life to Michael for the past 5 years to squeeze whatever I could from our time? Now I’m alone. Any room for me?
And then he was gone. His oncologist immediately told me I was at high risk for death from the previous months of physical and emotional degradation I’d endured. I was so exhausted. I missed lying in Michael’s arms but I slept in our bed. I was going day to day. I needed lots of silence inside of me. But Henry was returning to Guam so we attacked some of the heavy chores that I couldn’t do alone. Within a week, we’d emptied Michael’s closet, his drawers and the tall shelves above his desk. I thought I’d faint from fatigue, while I struggled with the sense that I was rapidly throwing his life away. He wasn’t his stuff. But it felt terrible, only one week gone which felt like forever.
June 3rd, 2017 – I miss his brain when he was whole. I know we said all the important things many times but he wasn’t himself for weeks before he died. I can tell that parts of me were adjusting inside. But I still had his body and I could care for it. I could hold him and feel his warmth. I’ve had what there is to have from love. How far will I have to go without intimacy? Where will the peace come from? June 4th, 2017 – I can hear Michael’s voice. But I can’t feel him the way I can feel my mother. Maybe that’s because he was so psychologically damaged when he died. Will the real him be released somewhere into the ether? Otherwise, it will be me in a quest to conjure him for the rest of my life. June 5th, 2017 – Happy 68th birthday, my beautiful boy. The first of many special days when I’ll feel a hole by my side. My empty hand. The perennial ache. All structure and landmarks are out of my life. Cancer and caregiving have been my structures. Nothing to go back to now. I have to reimagine myself from the scraps left behind. Feeling daunted. We knew there would never be enough time. But you’ll be with me forever. You promised.
The days passed. I filled them with small activities. I’d decided that Michael’s celebration of life won’t happen for months. I wasn’t ready, nor was I interested in anything traditional. I was going to curate his life as an exhibit, with music and a slideshow and no speeches. What I show will speak for itself. I returned to the pool and realized I had months of hard work ahead to recover from my de-conditioning. I saw my doctor. I’m wasn’t dying. I made an appointment with the orthopedic surgeon about my knees and was informed that I had to wait a year before replacement. Apparently grieving people don’t recover from surgery as well as happy people. So I hobbled ahead.
In mid-June, I began sorting through the monumental task of how to plan for the December event, my hours accompanied by Michael’s IPod music of 2502 songs. On our road trips we listened to these all the time on shuffle, so I was certain I’d never heard every song. Now I was determined to hear them all. And suddenly, lifted by the music, the Michael of before came flooding into me like an avalanche. As I swam my laps, his face bobbed before me like the disembodied Cheshire cat from Alice in Wonderland. His presence was everywhere, a luxurious comfort, a warm velvet throw, an interior volcanic eruption, a primal comfort which was somewhat like floating on a waterbed. I was astonished but grateful. Whatever alchemy was at play worked for me. I released my thoughts in a torrent of daily letters to Michael which I title “P.S. I Forgot to Tell You Something.” Or, “I’m in Love With my Dead Husband and It Feels So Good.” There are hundreds of them.
I made regular appointments with a therapist. I spent time with my family. I went out to see the solar eclipse. I saw the movie Wonder Woman, my first film in months. I began to have lunch dates with friends. I dreamed that I had a tattoo – I woke from sleep and drew it as I dreamed it, a cosmic message that defined Michael and me. I, always a needle-hater, went and got inked.
I was still in passionate love with my husband. I found my way to that every night when I entered the cocoon of our bedroom, where for so many years, we existed only for each other. The shrine as my daughter laughingly called it. Often, I woke with my heart pounding, convinced that my vivid intimate dreams were real. Who’s to say whether they were or not? Each night, I found myself calling out his name into the darkness before I fell asleep. I am completely unashamed of myself. In September, I planned the longed-for train trip to Glacier National Park, on my own as an independent woman, albeit a slightly crippled one. To my horror, the west was a blazing inferno that summer and the south was drenched by hurricanes. A scant two days before departure, I canceled the Glacier trip and re-routed myself to the Flagstaff-Sedona area, a spiritual place where I could establish my balance and be brave, striking out on my own and living the full life Michael wanted for himself, for us both. I found that a well of strength I thought was gone was still alive in me, buoyed by the powerful, mystical bond we shared for so many years. I never thought about things like eternal love. But evidently such things do happen, much to my somewhat baffled mind. Apparently this was going to be the foundation of my life as a widow. As the song goes, maybe I’m amazed.
That December of 2017, I held Michael’s event at our local Civic Center. I knew it would draw hundreds of people from all the parts of his and our life, family, old friends, his music business family, our political life, his teaching career and a wide generational swath of those who’d found a warm, loving safe space in our home through the years. No speeches were made except for my short interview with the local television station.
Three years have passed since that event. I’m still writing Michael letters although not every day. I still call out his name every night before I sleep. I started my blog on January 1st, 2018. I had no clear idea of what I’d have to say other than at some point, to write the book I’d called Be 278, the words I spoke to Michael after reading the dreadful survival statistics on that Merkel cell cancer website when he was first diagnosed in 2012. Sprinkled through my website are the 13 previous chapters of this tale that I needed to share. To honor Michael, to help anyone feeling alone during their cancer times, to illustrate that we all share common bonds and that we who survive, can live at our best despite the grief that never leaves us. I got to Glacier eventually, along with having other rich adventures during these past three and a half year. Covid has been a damper but I hope to get to the other side to resume my fuller life. Michael is still with me, sometimes so ablaze I can barely draw air. I’m forever grateful that we found each other. And so, finally, I lay this story down and go back to the more joyous tales of the past and the new ones of today and hopefully, tomorrow. Until later, my love.
Paul & Linda 💕 Renee & Michael
Bravo, Renee 💐 so beautifully & powerfully written.
Thank you.