This is one of those days when a look back can be truly sobering. Today is the 2022 midterm election. Although all of my fears in this blog below, written in my first year of publishing this site, were not realized. But many of my reflections were prescient. Roe V. Wade is gone. Women’s rights are still at risk. Voters don’t understand all the real issues and can’t draw the lines between point A and B. Apathy is a problem. Pre-pandemic, people were alienated from the political process. Post-pandemic, many are hanging on by their fingernails. Where is Gen-Z? Will they come out and fight for their futures? Today I am truly scared about the possible results of this election. The only thing I’m certain of is the constancy of my feeling for my still incredible daughter.
Despite my embarrassment at being a pretty decent athlete when I was growing up, I still wanted to be good at sports. Why embarrassment? In elementary school, I was teased a lot because I was better at baseball and football than lots of boys. Classic bullying, I suppose. They called me names, most often “moose,” after a left-handed baseball player (I’m a lefty) who was a big hitter for the Chicago White Sox at the time. I wasn’t thrilled. I got through that time as so many kids have to do, pushing through the pain.
In that time there wasn’t much support for girls’ athletics, at least where I lived. The only female teams I can recall at my high school were a swim group called “AquaDebs,” and the cheerleaders squad. An organization called GAA – the Girls’ Athletic Association, was tasked with supporting our school’s letterman. Title IX, enacted in 1972, was several years away. That bill changed everything. Here’s the simple version: Title IX of the Education Amendments of 1972 (Title IX) prohibits discrimination based on sex in education programs and activities that receive federal financial assistance. In any case, although I didn’t get many welcomed accolades for being athletic, I was still an active participant in multiple disciplines. I dabbled in softball, basketball and pick-up football. I always loved swimming and volleyball. I was able to turn hurt feelings into aggression which was empowering. I always needed physical activity to balance the mental gymnastics in my very busy brain.
I can still remember the gym class that focused on basketball skills, back about a million years ago. Well, not exactly a million years ago, but sometimes, I feel those days are kind of my prehistoric era. In any case, we spent a lot of time doing pivot drills, learning to keep one foot in place, while swiveling around, trying to find a way to take a shot, pass the ball or begin dribbling without breaking that central basketball rule – you can’t move your feet once they’re planted without pivoting. You have to be agile in mind and body to remember this rule. If you lift that foot, the referees will call a traveling foul on you and the ball goes to the other team. I’ve been thinking a lot about pivoting recently. How do you keep one foot in place while pivoting is a necessity in life, not just basketball. I’ve been working on that skill, thinking about staying nimble through different demands on me. Not fouling. Not giving up control of the ball. Metaphorical thoughts that have been popping up frequently.
Because of how quickly pregnancy can be discovered these days, I’ve been waiting for my latest grandchild with a combination of excitement, anxiety and wistfulness for what has been almost the full term of this baby. Back in the dark ages when I had my kids, early detection was not the thing it is today. We had kits for discovering the baby at a couple of months into gestation. I had no sonograms with my daughter and only one with my son. I didn’t learn the sex of either kid until their births. When my grandsons were born, eight and twelve years ago, we didn’t know their genders either. But there was tons of information available about my granddaughter which lessens the mystery but heightens the sense of knowing the baby before she arrived. A thought-provoking process indeed. I’d hoped to see my son in a strong relationship with a partner and to see his child, as it was always clear he wanted to be a dad. Yet, I had a lot of trepidation about the actuality of the whole experience. When I became a grandparent for the first time, Michael was with me. We were unrestrained in welcoming our first grandson, who was in our home regularly as I cared for him from 7 weeks of age to just shy of three years old. The next one arrived under much more emotionally charged circumstances as Michael had developed his wretched rare Merkel cell cancer, was in remission for over a year when it came roaring back, metastasized when our daughter was in her seventh month. Initially, we were told that absent treatment Michael might not meet the new baby. He was in the midst of chemotherapy when grandson number 2 arrived, living long enough to get past his second birthday.
I was nervous about what I’d feel, meeting our new granddaughter without Michael. I’d gotten tearfully through our son’s wedding and figured I’d respond similarly to this birth. But internally, I guess I’d already been pivoting to a subtly different position. During the long anticipatory months, I’d evidently been practicing navigating this event on my own. When the moment arrived, I didn’t cry or feel anything but the teeniest whisper of melancholy which didn’t diminish the joy of welcoming this healthy little girl. When I looked at my son, transported with happiness, I could fully experience that moment with him, despite knowing that he, too, dearly wished his own dad was with him.
The fact is, life is a spinning affair with issues big and small looming up, then sliding away, minute by minute, hour by hour, day by day. The midterm elections are once again front and center in my mind, baby aside. With the incredible divisions in this country, people diametrically opposed to each other on virtually every issue, I am on edge about what future will hold, not only for my new granddaughter, but the rest of my family, loved ones and the greater community. With so many wacky candidates, election-deniers, conspiracy theory spreaders and armed vigilantes wandering freely around polling places, I need to keep one foot planted in place. While I feint and move to dodge the almost impossible anxiety a necessity if I want to keep my balance. As long as I’m still here, I need to find the way through this mad time, mindful that I can still make positive contributions to what I believe will create the best possible world for the people I brought here, and theirs.
I need to clean my house and wash the dishes. Bills have to be paid. I have to continue culling books, papers and other unnecessary accumulations of stuff which I don’t want to dump on my family at the end of my life. I have to exercise, go to the eye doctor and have my teeth cleaned. I have to finish knitting the baby blanket for my granddaughter before she outgrows it.
A few days ago, in the midst of the baby event, big winds blew through my town, knocking off almost every pine cone and countless needles from the old spruce tree in my yard. In my spare moments, I clean those up as it’s time to put the garden to bed for the winter. On some days, I have optical illusions, imagining the lot getting getting broader and longer right in front of my eyes. I am still the gardener in this space. I have to stay strong so I can manage it for as long as possible. I want to continue getting rid of useless grass, putting native plants for pollinators in the ground instead.
I need to read books, watch movies and take classes so my brain stays alive. I need to converse, to have social contact so I don’t get any weirder than I already am. At some point, I’d like to travel again. I need to take care of my dog. I want to write more. I want to keep remembering and feeling Michael in my life.
The caveat to this strategy is that I have the option to deliberate about what comes my way. So far, I’ve been able to hold my ground and employ what I’ve learned throughout my life. That makes me fortunate. Deciding what to think about, or what to address first, is a privilege. I am afforded the luxury of time to pivot from the mundane issues of living to the ones that can forever change my world. I can use my skill sets, practiced over a lifetime, to shift my focus, to have agency and control. For those who are homeless or hungry, who have significant mental disorders and no support system, or for those who live in war zones, where violence and upended daily life has been thrust on them with no warning, there is a different story. No one knows exactly how well their best practices will work when challenged by the unexpected.
So far I’ve been able to hang on to myself, primarily sensibly, no matter what traumas have been tossed my way. I always wonder what will cause my undoing. I’ve been bruised and challenged many times and am certain that I’m subtly different from who I was years ago. But along with the sports metaphor is this little tidbit my dad repeated to me over and over as I grew up. “You have to make a plan.” I always believed him when he said that. However, plans need to be elastic, to stretch, to respond to the unpredictable. In other words, to pivot. A worthy survival tactic to this point, at least in my experience. I hope that as I watch the election returns this evening, I’ll be able to hang on to this useful tool.
Today is my son’s 36th birthday. I wrote this blog three years ago. I wanted to read it again. I decided to re-publish it as an homage to my good son. Because he is still that person.
I really don’t need to be reminded that doing it now, whatever it is, is the only way to live. I can’t say I’m thrilled to always be mindful of the thin divide between being vibrantly alive one minute and dead the next. I’ve been parrying with that knowledge for most of my life. Maybe I began knowing that when I was four and my mother disappeared into the hospital for the first time. Maybe it was shortly thereafter when I learned that grownups made up stories to tell their kids when they didn’t know what could really happen. Maybe the mental dance started when my baby cousin died the day I graduated from eighth grade. The solid ground beneath my feet definitely shifted that morning. No matter what the inception of the slightly morbid attitude I always seemed to have, there’s little doubt that no amount of eye-rolling and blowback I got about it, particularly from my family, had any effect on me. My kids can attest to the fact that when they were old enough to bear it, I’d usually leave the house calling out over my shoulder, “if I die and never come back, I really loved you.” Annoying as they said that was, they now say the same thing to me. After the impossibility of dealing with their rugged father’s early unexpected death, they now look at the world differently too. They’ve both gotten pretty good at maximizing their lives, or at least trying to. No more unlimited time for them. Of course what that means for me is putting my money where mouth is – I need to understand why they make their choices and try not to let my maternal anxiety interfere with them. Unless I feel there is something inherently or potentially unhealthy for them, I need to be supportive, understanding that they are trying to live the fullest lives they can, whether I like it or not. That’s a challenge for me. I suspect I’ll always want to protect them no matter how old they are. What’s lucky is that the intimacy we share in our family lets me in on what they do, even if what they do scares me. Mostly, they try to appease that anxious side of me, maybe because they like me enough to make sure that whatever it is they’re doing, I won’t have a coronary or a stroke because of it. Kids can put you to the test in so many ways. That’s just part of parenting. But what isn’t necessarily part of being the kids is their sensibility that the choices they make have impacts beyond themselves. I know I’m in the lucky parent group because I’m generally a consideration in those choices. I also know that isn’t always the case.
“Singer David Olney dies during performance in Florida”
I was reminded of all this because of two seemingly unrelated recent events. The other day, a musician who was particularly close to old friends of mine, died on stage in the middle of a performance. How unimaginable. One second he was playing and singing, the next, he apologized, dropped his head and was gone. What a shattering transition. I’ll admit, that after watching my husband die by inches, there was a part of me thinking, how lucky, to go out doing what you love, rather than watching yourself slowly disappear. But I know that the quick deaths are hard for the survivors. I think about what I’ve read about Native Americans and their opinions on what they thought amounted to a good death. I guess that everyone has to navigate loss in their own ways, which are complicated by individual ideas, religious beliefs and a whole myriad of cultural factors which subtly influence how they adapt to the inevitability of death.
That incident occurrd at a time when my son was away for a few weeks in Colombia. A biologist by trade, this particular trip was one for pleasure, although his idea of pleasure includes strenuous activity and time spent away from the￼ beaten path. A specialist in bird physiology, and as someone whose interest in seeing as many species as possible in the wild is enormous, I knew that this trip would take him into places with no internet. I also know that there can be dangers when traveling abroad and that his being out of touch would make me nervous. His career has for years, taken him to many countries, far, far away. You’d think I’d be used to this by now. But I never really am. I’m usually worried about all that could possibly happen. Anxiety is the legacy of my own upbringing, try as I may to undo it. The twist in this instance is that the juxtaposition of the musician’s death with my son’s trip, made me remember how I could just keel over myself at any moment, while my kid was far away and unable to do anything about it. After all, I’m the one in the same age group as the musician. And I know that anything can happen at any time. It occurred to me that although my son and I are mindful about expressing love for each other, I haven’t made certain, at least for me, that he knows that I think he’s the embodiment of a “good son.” We bandy that term around a lot. He will frequently ask me if I think he’s a good son and invariably, I’ll teasingly laugh and say no. This banter usually follows an episode of his absentmindedness, a trait that reflects one of his dad’s most annoying habits. If I had the proverbial nickel for every time I heard, “have you seen my glasses, have you seen my wallet, have you seen my hat, have you seen my keys, have you seen my grade book?,” I’d be awash in riches. My son never lets me forget his dad by mimicking this behavior on a daily basis. I marvel at it and always did. But as with everyone we love, you accept a few irritating habits and move on for the sake of the bigger picture. And with both of these absentminded guys, I certainly could, and still can, do that.
So what exactly is a good son? I remember my mother once telling me a story about a friend of hers whose son was a doctor. She pronounced in a solemn but somehow smarmy tone that the doctor/son had bought his mother a home. At that moment I heard my mom’s message very clearly. A good son was one who honored his mother by buying her a house. In mom’s world that’s what resonated. Not so much with me.
I remember exactly how I felt when my son was born. I was a little nervous about what it would be like to raise a boy. My daughter was already over 5 when he came along. I was anxious about knowing what we’d need to do to raise a male child in our culture, a male who would reflect the values his dad and I shared about gender equity, fairness and social responsibility. Knowing what proclivities are just built into a person is often hard to perceive. But that wasn’t true with our kid whose inherent sweetness was blazingly and immediately apparent. Even as a small baby, that kind, gentle nature just oozed out of him. Within a few days, my husband noted that this boy seemed very attached to me. Our connection was immediate, obvious and one that grew exponentially over time.
Sweet doesn’t necessarily mean easy. This little guy was very specific. He refused all bottles and started eating solid food at only a few months old. He was a lousy sleeper, waking every few hours. When he was old enough to talk he explained that he didn’t think it was fair that he had to sleep by himself. He had a relentless disposition and would explore an issue until there was nothing left to find. He craved physical contact and was remarkably affectionate. I was glad that as he grew, he never went through a phase when he stopped saying I love you or gave up hugging us.
He learned to read early and when he discovered Caldecott award books, read them in order of publication date, five at one time, all in a row. We realized he was color blind before school started. He could read the names of his crayons instead of knowing what color they actually were. He befriended a wide range of kids and had weird birthday parties with kids so disparate in nature that they didn’t like anyone there but him. When he was 7, he became a peer mediator at his school, settling issues between kids years older than he was.
Memories easily come flooding back. Our little guy clearly had an embarrassment of riches. He was intellectually gifted as well as athletically talented. He loved learning, never meeting a subject he couldn’t manage, even if it wasn’t a favorite. He was a musician. He showed great facility with languages and twice represented our community in the National Spelling Bee. He had issues like any other kid, but for the most part, raising him was easy and joyful. Being around him felt good.
The list goes on and on. A successful academic career culminating in a doctorate and beyond. An appreciation for the value of friendships and putting in the work to keep them. A deep seated respect for the natural world and a commitment to conservation. An egalitarian approach to people. So what does enumerating all these traits and achievements really have to do with anything? We were lucky and so is he. What is really more the question is what makes a good son? Is it what he’s accomplished? Not for me. It’s about who he is and how￼ that translates into our lives. That first blast of sweetness remains the essential core of him. We always knew that our family was intensely bonded and loving.
As time has passed, those feelings have gotten richer. I’ve watched the painful growth that’s come from loss and felt the deepening self-reflection in my son. Even when he’s far away, he’s found ways to let me know that he’s aware of how I’m feeling and he makes sure he attends to my emotional needs. He gives me his time, making sure we share experiences together. This past year when he’s actually been living stateside, we’ve traveled together on a jam packed road trip that covered twelve states in fifteen days. We barely tangled with each other on that adventure which I think is miraculous. A while back, he asked me if I had any regrets in my life. I told him I was sorry I passed on a Paul McCartney concert which I had tickets to many years ago, too close to the death of my father for decorum. Or so I thought back then. He rectified that regret this year, surprising me with tickets to see Paul at the beginning of our trip. When he’s traveling in a place where my favorite food is nearby, he brings me a meal. Recently he surprised me with a life-sized cutout of Roger Federer, my tennis hero, for my house. Utterly entertaining and hilarious.
￼￼When I had both my knees replaced, he was here for me. My kid is mindful. He’s spending a lot of time with me while we have it. Things aren’t always perfect. But given life’s challenges for both of us, we’ve done pretty well. I suspect that the world would be a considerably better place if everyone had a good son. Like￼￼ the one I have. I needed to write this out. I’m grateful that I had time to do it.
I wish I knew how certain images, whether from a painting, a television show or a film, magically plant themselves in your brain, emerging unexpectedly, often at just the right moment. Whatever the reason, I’m grateful. I’ve been casting about for the perfect one which would help me describe the experience I had when viewing what I’ve titled “Buried Treasure,” a cache of forgotten VHS tapes. Recently I was fortunate to get three of them digitized to a “forever” format from a degrading one. The scene in the photo above is from the 1945 Hitchcock film Spellbound, a thriller/mystery/love story starring Gregory Peck and Ingrid Bergman. This moment occurs when Peck, suffering from amnesia while falling in love with Bergman, begins to remember his past, their embrace juxtaposed over doors swinging open, to another and another and another. As I watched the digitized family videos, dating back to 1987, I felt quite like Gregory Peck in his moment of remembering. Although I have quite an excellent memory, generating my own visual recollections is quite different from seeing them unspool on a screen. I was taken back not only to memories of my family, but also to the building of the homestead Michael and I landed on in 1978, a place we thought would be a temporary residence, yet one in which I am presently still ensconced. Both of our children were conceived in this house and Michael died here in 2017. All our everythings happened in between. And then there is also the yard, the garden and the pets who joined us on our journey. For more background, see my previous blog post, “Buried Treasure – Part 1.”
Our daughter was born in August, 1981. For the most part, between our full-time jobs and our kid, we were primarily focused on pulling the interior of the house together. On the exterior, we got a fence built for containing our dogs, along with erecting a garage and pouring a gravel driveway. The house foundation needed tuck pointing. The endless lengthy to-do list included insulation, a safer furnace and exterior paint. By 1986, our son was expected in November, necessitating the final takeover of the remaining apartment in the house. Looking back, I feel amazed at how we juggled so many demands. But then again, we were strong, in our 30’s and quite motivated. Somewhere in the midst of it all, we went to movies and concerts, spent time with friends and family and deepened our relationship. I’d only lived a house for my earliest childhood years, spending the rest of my time before college in apartment buildings in Chicago. I never had a green space or a garden. Michael was a suburban guy who viewed our neglected yard as a disaster. Very slowly, in the midst of everything else, we began an effort to reclaim the forlorn space from its weedy, tree-less, flower-less condition.
When I loaded the digital movies onto my computer, I watched them as they unspooled, listening to the dialogue and recalling my feelings as they rolled along. But I quickly realized that despite the hazy quality, I wanted still photos of certain moments. So I went back and started over, pausing at various times, when a specific facial expression, a look at what once was in the garden, or my gorgeous husband, demanded a still picture which I could look at more than once. I went through all the footage and chose to photograph the bits that resonated most with me. The film begins in 1987, when my daughter was six while my son was about six months old. My in-laws were visiting. They shot the footage on their Super 8 movie camera. The first photos were taken in one of my favorite parks, which later became a refuge for me decades later, during my coping with Michael’s cancer.
In the same time frame, daily moments in life were caught on film. I’m doing tricks to get my son, more interested in my keys than food, to eat. The shots of both kids are entertaining to me. My daughter found many ways to eventually insert herself into pictures of her brother who was usually delighted to see her. How could she know that everyone had over 5 previous years’ worth of photos with her as the center of attention, long before he ever existed? Sibling dynamics are always interesting and instructive. Their relationship grew closer over the years and today they are great friends and confidantes, as well as sister and brother.
When my in-laws visited, they stayed in a hotel just 2 blocks from our house. The best amenity at that place was an indoor pool which our kids could enjoy no matter what weather was happening around us. Michael and I both were water people so we encouraged the kids to partake of submerging at every opportunity. We were never thrilled with these family visits as his parents held world views diametrically opposed to ours. Feeling like he had a family of origin played a big role in Michael’s psyche until almost the end of his life. Because I loved him so much, I hung in there with him, trying to keep the peace for the first 20 years of our life together. We had my in-laws only grandchildren. Ultimately I checked out of that relationship precisely because their behavior with the kids was often undermining to us. We let the kids figure out their feelings as they grew up. Seeing these snapshots made me think about both the beauty of our little nuclear family along with the hard parts of the larger one. Along with the hotel swimming, there were our water trips to Florida which was home to my in-laws. I missed going there when I absented myself from them and their scene. But I could no longer abide their behavior. Michael used to tell me that had our situations been reversed, he’d have cut off my parents after six months. Who’d have thought that watching old movies would stir up so many emotions? Maybe everyone would feel like me. Good memories and awful ones.
Getting back to the home front, watching the videos brought back a flood of emotion about our developing relationship with the yard, along with sweet thoughts about the dogs who populated our lives during those times. Michael and I each had a dog when we got together in 1972. Mine was a single person animal who bit the paperboy. I had to let her go to be a responsible citizen, which was so hard. Eventually I got a border collie who became best friends with Michael’s goofy Irish setter. By the time we had the kids, both animals were aging. The setter lived to be 15, dying early in my pregnancy with our son. My border collie lived on for awhile, fading before our son was born. When I was still pregnant, Michael arrived home one day with an adorable springer spaniel he named Manfred, who was diagnosed with a congenital brain disorder that killed him at an early age. After losing three dogs in three years, we decided to wait awhile for another canine, opting instead for a kitten from our local humane society. After selecting one as a family, a bureaucratic error arose – our kitten had already been promised to another family, an event which traumatized our seven year old daughter. When I went back on my own for another try at cat adoption, I stopped in the puppy room and wound up with Sydney, our smart, gentle black collie mix. Our son was just around a year old then. They grew up together.
The dogs of our lives represent one part of how our family evolved, navigating the joy and sadness we all bore together. But looking at the barren yard, with only the infant stage of how it looks now, is really as emotionally stunning for me. I remember planting those little upright evergreen yew shrubs that I bought at K-Mart for almost nothing. K-Mart disappeared from our community a long time ago. They’re still here. The swing set was useful for a few years but ultimately, Michael replaced it with a tall, multi-level climbing structure for the kids. That’s still here, too, over thirty years later. My grandsons have played on it, but long ago, after the kids moved on, I planted climbing vines to attract hummingbirds. I used the other former kid hideouts and meeting places for annuals in pots, hanging baskets and even a recycled sink from our old bathroom.
Meanwhile Michael was clearing grass for an herb and vegetable garden which fed us tomatoes, basil and peppers and more, converting them into pasta sauce, pizza sauce, salsa and pesto. He was an inveterate canner. We ate fabulous caprese salads all summer. When he died I converted that space into a pollinators’ garden. His herbs return annually, a welcome reminder of the hours we spent working out there, side by side, him with his food, me busy planting perennials, shrubs and trees. I still grow tomatoes, peppers and basil on a much smaller scale. I plant them for him as much for me. I think we’re part of this ground. One day down the road, we actually will be, at least in ash form. Here’s how it looks now.
Retrospect is so poignantly comprehensive when enhanced by what you can actually see and measure with documentary evidence. These old videos also took me back to unexpectedly simple moments of daily life back when the days were a blur of activity. I lifted a few more photos as illustrative of the ‘80’s for us.
When I picked up my flash drive from Mark who transferred the VHS files for me, I dropped off six more tapes. One of them is labeled 1981, the year my daughter was born. Another was from 1989 entitled, “Home movies of dad,” taken the year both my parents had cancer, my mom surviving, my dad dying in late September. I’m hoping to find as much treasure in those as I did during this first round of unearthing the past. We’ll see…
Well, in this life, I guess you just never know what might happen which in and of itself, is worth sticking around for as long as there is some quality to your days. In May of this year, I was thinking about my life’s great loves, Michael, of course, and my treasured friend Fern who was family to me. In the paragraph below, I bemoaned the fact that I’d never see a new photo of either one of them. But not two weeks ago, I unearthed decades-old VHS videos which I got digitized. Now I have multiple photos of Michael that I’d never seen – my buried treasure.
Today I received a message from an old and dear college friend, one who knew me and Fern together in that time and Fern later, in a more collegial way as she worked on her master’s degree at the same university where he was ensconced. He informed me that he was coming into possession of some of Fern’s writings and that as soon as he had them, he’d get them into my hands. When Fern committed suicide in October, 1988, she called me the night before she ended her life. She was in a dark place. I was trying to convince her that in only 2 weeks, we would be attending our 20th high school reunion together and after that, she could come stay with me and Michael so we could help her. After her death, I communicated with everyone I could find in Utah, plus her sister-in-law, trying to get her written work to protect her memory. I can’t believe I’ll finally receive it, after all these years. I’m so moved by these unexpected gifts. Aren’t I the lucky one to still be alive to receive them?
May 14th, 2022
I first published this post a few years ago. At the time, I was still adapting to Michael’s death, now impossibly, almost five years ago. For me, it’s not dated, though. I can never have a new experience or a new photo of either Fern or Michael. They live on in my memory, although Michael remains a mysterious daily presence in my life. When I think of unconditional love, I think of them first. Until I am no longer me or until I’m gone, I expect that I’ll be revisiting them every year. So here is my annual homage to Fern.
Dear Fern(or Phil if we’re using inside jokes)
May 14th. Another one of your birthdays. I start thinking about it in April, girding myself for the slog through all the challenging events that are emotional triggers for me from early May into early June. Now I have to contend not only with the hole where you belong, but with Michael’s absence too. I’m glad I never had the gift of vision to see the future, to know in advance that my biggest loves would be gone, leaving me here with memories so vivid and palpable, that processing your absence is still a challenge. Today I realized this 71st birthday of yours, and the anniversary of your death in October, will officially mark the sum total of the entire length of our relationship and a bit more. We knew each other for 30 years and now it’s 34 years since you’ve been gone. It’s hard for me to wrap my mind around that fact. I’ve already spent more than half my life without you. The truth is, I still remember so much about what we meant to each other, what we shared, the good times and the awful times.
I can close my eyes and look straight into yours, seeing your expressions which I knew so well. Often they were highlighted with your favorite color eyeshadow, Daffodil, a ridiculous yellow color you chose to go with your brown v-necked sweater, which reminded you of one of your high school crushes. And those absurd glasses you wore, one pink pair and one blue, decorated with little rhinestones in the corners. I can feel you. Your angst and pain, your frustration and anger. I still mourn you, all of you and am angry that you were victimized to the point that death became a relief for you. I remember those harsh realities. But I also remember laughing. Lots of laughing.
I remember visiting your house at 8138 S. Jeffrey in Chicago. I lived in an apartment, so being in a house was pretty impressive. You had a piano in the living room and you played Clair de Lune for me. We went into your bedroom that was all yours, unlike me who always had to share with my two sisters. You had a double-sided chalkboard that flipped in circles and on it I wrote the “Personality Plus” program that I thought would help you be happy.
We bowled at the Pla-Mor bowling alley and ate greasy food at Carl’s Hot Dogs which was so close to where we lived.
I remember when we saw the Beatles at the Chicago Amphitheater. The joy and madness we shared, with Bobby Hebb of “Sunny” fame, and The Cyrkle who sang “Red Rubber Ball” as we waited impatiently for our idols. My loving Paul while you loved John was so convenient. We had no friction or jealousy and were happy to sing their parts in our endless harmonizing.
I remember sitting in the Woods Theater all day watching “Help” when they just re-spooled it for hours, instead of having to pay for each viewing. By the time we left we’d memorized most of the lines.I remember sharing the great adventure of our train ride and trip to Montreal for that magic summer world’s fair, Expo ‘67.
I remember our three sarcastic little novels which I still have in my nightstand drawer, in which we skewered everyone we knew and all the absurdity of high school. I remember reading our diaries to each other every night. We shared everything.
I remember March 20th, the day we anointed to mark how we felt about our crushes. I remember when at 15, we were smart enough to realize that we’d need a special perfect childhood day to conjure when things got too hard as adults. The details of that day have always stayed with me. That day is still my retreat. I feel it, smell it and hear it, with you by my side. Hot sun with friends by the lake, cinnamon rolls, shimmering pavement, burgers and fries, hearing Elinor Rigby for the first time.
I remember photo day at Comiskey Park, and Cubs’ games in the bleachers at Wrigley Field. I remember eating at the Shoreland Deli, Rib Hill and Seaway’s on 87th Street. I remember countless Black Hawks games, standing room only, and all the songs we wrote about our favorite players to Beatles tunes, memorializing your passion for Bobby Hull. I liked Doug Mohns.
We were both lefties which seemed to mean something. I don’t know why we thought that made us special and inevitable as best friends, but that’s what we thought. I remember our disastrous attempt at being roommates as freshmen in college and how we fixed everything later, after I moved out.
I remember when you pledged a sorority as I stood watching, understanding your need to do that, while never wanting to join you. I remember you coming to be with me as I tried acid for the first time. You didn’t need any drugs – you were already naturally impaired. I remember so many of your emotional crises.
I’d get phone calls from strange people saying you needed me to come and get you, and I always came. I talked you down from your latest ceiling and tried hard to be the mom you never really had.
I remember how we loved mocking Rosamund du Jardin novels. I remember your flying fingers at the typewriter, on the piano and eventually on your court-reporting machine. I remember how you came to rest your overworked brain when you hid out in the many houses I shared with Michael. I remember my visit with you in California, the year before I got married.
We hiked in Muir Woods and bolstered ourselves mentally as we set off to live like grownups. I remember your life as an au pair in Europe and your marrying Omar and your not having babies. I remember taking a break from you after I felt you’d sucked all the life out of me.
And then I remember forgiving it all and finding you, to be connected with you the night John Lennon died. I remember the first time you met my daughter. And the time we met after not seeing each other in a few years and your relief that I didn’t have a “mom” hairdo. We hopped into a photo booth that day, you making awful faces.
I have every letter you ever wrote me.
I have our class photos from elementary school and our high school yearbooks. I remember your life getting more challenging as mine was getting more solid. I wanted to make you better, to make you survive, and more than that. I remember our last conversation, when it felt like you might get back here from Utah, to come and stay with us so we could hold you up while you climbed the hardest of your internal mountains and memories. I remember you saying that the worst part about contemplating suicide was realizing how hard it would be for the ones you left behind. I thought we were speaking rhetorically. I didn’t understand that as you told me you loved me that Sunday night, you were actually saying goodbye. On Monday night, you were efficiently taking your life. As I slept. I woke that night from a terrible dream, a dream in which I felt I was dying. I sobbed inconsolably in Michael’s arms as he tried to reassure me that I was alive and well. I know that was the moment you faded into the oblivion which had become your inviting sanctuary. It took two days for me to find out about that. I learned everything I could from your Utah cohort. I tried to secure your writing through hours of conversations with these strangers, but they never sent me anything. I couldn’t work and barely functioned for days. Eventually I rebounded from that torture. One night I dreamed of you, dressed in a red turtleneck sweater that made you look beautiful and exotic with your dark hair.
We went toward each other and when I put my arms out to embrace you, you went right through me and I knew that was a message. A message that you were where you needed to be and that was ok. I accepted whatever that dream was but I still miss you, always. I still think of what it would have been like to be old together. You were my family. I still can’t hear Beatles tunes on certain days when my wiring is in high gear and I dissolve into the familiar companionship of grief. And I go on. Who knows why? I’ve never been religious and I’m not the world’s most fanciful person. Still, I find myself wondering if somehow, you’ve bumped into Michael out there in the universe, who’s taking care of you like he used to help me do it when we were young. Wouldn’t that be wonderful? Maybe one day I can find you and we’ll be together for so much more time than we lost. Happy birthday, my precious, oldest friend. I hope I’m long gone before I ever forget you.
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.
Way back in the fall of 1978, Michael and I moved into the first, and what turned out to be the only, house we ever owned. We had no idea we were going to stay parked in what was then a three unit apartment building, converted from a single family dwelling to a multiple one during the Depression. With ten rooms and two bathrooms, the expense of maintaining it was probably too much for any single family during those economically lean days. When we made our purchase, the same financial constraints were true for us. We moved into the first floor which had five rooms and one bathroom. Upstairs there was both a two room and a three room unit with a shared bath. The rents from those apartments helped us with our mortgage payments which back then, carried a 15 and 1/4 % interest rate. A daunting number. The three units were relatively primitive. The wood floors downstairs had linoleum with gaudy roses glued to them. Electrical lines ran up and down the outsides of the walls in alarming patterns. We had pull chains instead of light-switches. We painted, scraped off layers of wallpaper, sanded and stained. A 1986 movie called The Money Pit was apt for what was going on in this place. We figured we’d stay a couple of years before moving on to a house with fewer refurbishing demands. But the housing market got pretty crazy and we realized that we could never replace the space or the double lot we had, so we stayed.
We worked so hard in those beginning years. After coming home from our day jobs, we attacked both the interior and exterior of the house. The process of repairing, replacing and remodeling was endless. I can’t remember why we decided to refer to two of our downstairs rooms by color, but I’m relatively certain that happened when our first kid was a toddler. When she wanted to know where we were, we’d say, “the orange room,” or “the blue room.” Initially the orange room (actually a salmon color) was also the record room and then the library. The blue room was our first bedroom, and then the music room and the study. Over the course of about six years, we took over the entire house as our family expanded. Lots of the many rooms in the sprawling space went through different use iterations as we shifted how we lived in our home. Such memories. Our daughter was conceived in the blue room where over forty years later, Michael drew his last breath. But I digress. The buried treasure emerged from the orange room which, except for a sliver of color near the side of the door header, is now painted white.
The orange room became my mom’s room when living on her own became unsafe. She wasn’t there until her death, as I’d hoped. I was already caring for my baby grandson daily when she moved in, and shortly thereafter, Michael was diagnosed with cancer. Unable to manage all three who needed care, I moved mom into an assisted living facility. When you open the door though, the scent of her still wafts out. One of life’s mysteries. Having heard from a visitor to our garage sale one Saturday morning, that the orange room was once a parlor where he’d attended a wedding, we turned the room into that, as well as a play room for my toddling grandson.
After my grandson started day care in 2013, the parlor was just that. A room for reading, for enjoying sunset as a picture window faced west, and for enjoying the prisms that were tossed around the ceiling and walls by the twinkling crystals hanging in the bay window.
When my son was home during the pandemic, he used the parlor as his study. When he and his partner moved in over a year ago, they both worked in that room. When they got married this past March, their ceremony took place in the parlor. With only a week’s notice, I shoved furniture around to make room for our small crowd of officiant, family and guests.
By the time of the wedding, those newlyweds were living in their own place. After that special event, I left the room as it was for a few months, uncertain as to what I wanted to do with the space. Finally, I decided to rearrange things. While moving the furniture again, I noticed that one smallish cabinet was remarkably heavy. I’m not sure why I hadn’t noticed that before but I suspect I was in such a rush that I didn’t have time to pay attention. But this time I did.
After I set the cabinet in its new place, I pulled open the front door to see what large item was so heavy. Rather than one item, I discovered thirty old VHS tapes.
They ranged in age from 1981 to 2005. Michael’s parents had a super 8 recorder back in the ‘80’s, as did my brother. After a time, they transferred their films to VHS. Michael managed to transfer a few of his videos to DVD’s at some point. I remember that at one point, we had a VHS/DVD player which we purchased, with every intention of capturing everything on a more permanent platform than tapes. But we were busy and never got around to doing it. Among these discovered tapes were movies from my daughter’s first months of life, family movies with all of our family members for almost all of the ‘80’s, and the videos of my son’s participation in the 2001 National Spelling Bee when amazingly, he took third place. Michael and I, plus our children, were central in most of these taped experiences. As such, we weren’t looking at ourselves. Maybe we looked at a few of these films at some point, but technology wasn’t as great as it is today, nor did we spend much time during that period in our life, parked in front of what we called “the idiot box.” Years slip away. That little cabinet used to be near the television. At some point, we likely forgot the tapes inside and moved it as it was into the parlor.
As my kids grew up they were increasingly busy in their lives, but every now and then they’d talk about their pasts and were interested in looking at old photos and the like. My son in particular, really wanted to see himself as a participant in the Spelling Bee. He qualified for it in 2000 and 2001. Years later, as a college student, he was employed by the Bee’s sponsor, Scripps, to work at the event. He was flown to Washington, got free room and board and was paid a nice chunk of money for shepherding kids through the competition week. I contacted Scripps, ESPN and ABC. All of those entities had copyrights to the videos, which after a time, receded further and further into the past. Eventually I just gave up. When I started going through these tapes, I knew that there were technology experts who could work even with the oldest and most fragile ones, to transfer images to a digitized version of themselves. I explored what services were available locally and found a person who said that unless the VHS tape was damaged in some way, he might be able to get even the oldest data off these finds. I selected one labeled “Family Videos – 1980’” and two from the Spelling Bee, which were recorded by one of my dearest friends while we were in Washington. I dropped them off with friendly Mark, who works out of a tiny office, jammed from floor to ceiling with equipment and dozens of tubs filled with videos. He said he might be able to get back to me in a few months. I left the tapes and moved on to other parts of life. Last week he contacted me and said he’d loaded the tapes’ contents onto a flash drive which I could plug into a device for viewing and/or downloading. I told him my kid had been in the National Spelling Bee and would be very excited to see these treasures. He replied, “I know. I watched it.”
I was beyond thrilled that I was finally going to be able to give these memories to my son who’d coveted them for so long. But there was also those ‘80’s family videos. Starting in 1987, when my son was an infant, my daughter six years old, along with Michael and me, respectively 38 and 36 years old, I couldn’t wait to see what had been hidden away in my own house for 35 years. I’ve written before about how much I’ve yearned for a new photo of Michael. Death freezes that kind of thing. No more new anything. I went home, eagerly looking forward to whatever treasures had been unearthed. I got so much more than I’d hoped for. I watched the Spelling Bee videos first. When your kid gets into the final 10 contestants, there’s a break in the action as parents are invited to sit on the stage for the final rounds of competition. A long time ago, someone sent us a still photo of Michael comforting our kid after he misspelled the word that knocked him into third place. I’d never seen anything else from that time. Until now. I went through the film, frame by frame, taking still photos that I could look at more carefully, photos that were broadcast long ago on that day by ESPN. Their quality is grainy. But the feelings they evoke are crystal clear and so wonderful. The camera cut from our kid to Michael and me, while commentators talked about our family, mentioning that our son called us his heroes, something I’d never heard, along with other emotional string-pulling verbal backdrops. Here’s how the still photos which I took off the video appear, in order of the last three words our kid spelled in the Bee.
The experience of being hurled back in time is a mixture of delight and poignancy. I remember lots of other moments my family shared during that event in 2001. Our daughter flew in from college to join us in what would be the last time our son was eligible for the Bee. Our local newspaper picked up the tab for our hotel and meals. We were taken on outings which included visits to historic sites in Virginia and Maryland, and barbecues and sporting opportunities with other participants and their families. One of the best parts about being in our own little family were shared adventures like this one. I have other photos from those few days. Discovering the unseen moments as they spooled out in movie form were magical. But the Spelling Bee was a unique incident. The reels of memories elicited by the family videos I had transferred are a whole other matter. In addition to watching the growth of our kids, seeing our pets, and remembering Michael and me in our roles as partners and parents, is only part of the magic. Seeing the results of our efforts in turning our house and yard into the space it became is quite stunning. The power of my relationship with Michael, and us with the kids, moved me more than I could have imagined. Stay tuned for part 2.
“For you I’d bleed myself dry.” Yellow by Coldplay
I know that so many people don’t have homes, not to mention the countless others who do have shelters, but daily, approach them with dread because of what’s waiting inside. The bones of my big old house in early spring have always been a welcome, heartwarming embrace until that day, March 4th, 2017, when I made the turn into the driveway, that same turn I’d been making since September, 1978. Bringing Michael home after our 32 day stint in the hospital was the single most frightening day of my life. I’ve borne children, taking on the weighty responsibility of guiding them from total dependency to adult life. I steered both of my parents through cancers and ultimately their deaths, carrying the yoke of decision-making about their ends of living as I simultaneously became an orphan. But nothing compared to the magnitude of being solely responsible for shepherding Michael through what remained of his life. We’d talked ourselves to exhaustion and grief so many times through the previous five years, making decisions and plans, clinging to each other in our bed, sobbing, sweaty, passionate and stricken, until we finally passed out from our inability to relate to this inconceivable reality. On this Saturday afternoon, Michael wasn’t going to our bedroom, but rather to the blue room, a place of total disarray except for his hospital bed and my recliner which I’d jammed through the doorway. Just a few months earlier, the blue room walls were lined with floor-to-ceiling oak CD racks, along with a big shelving unit for vinyl albums. Michael had built all of those racks and adhered them to the walls. However, just a few months earlier he’d sold his music collection and all the racks but one along with it. The walls needed patching and painting but we hadn’t gotten to finishing that task yet. Now, despite its bedraggled condition, it was his home and mine as well.
My fear was matched by Michael’s confusion. He was exhausted, his days and nights mixed up and the omnipresent food issues a constant source of friction. Trying to clear his ropey saliva made him throw up every calorie I could get into his body. He was constipated and uncomfortable and I needed to help him. He tried to stay within the dignified boundaries we all take for granted in life. But he was too limited. I had to cross all those lines as I did with my parents, but this situation was so much more painful. He cried, feeling there was so little left of his former self. I took comfort in knowing he’d forget some of these miserable moments, his degradation. What about me? Those first few days at home were almost ritualistic in their repetitive chores. The caseworker at the hospital dropped the ball with home health care, so it was just us. Sleep, wake, toileting, showering, eating, nausea and more sleep. Michael was still a big man who pushed his walker so fast I was afraid he’d fall flat on his face and that I’d never get him back up. I gave my frequently unwanted help. My bone on bone knees were killing me. We struggled forward. He was still in active treatment and too close to the inflammation from radiation to know if anything had helped. So far, he’d been too tired to figure out how to lower the bars on the side of the hospital bed. I still had control and realized I’d better transcend my emotions and think us through whatever was ahead. While Michael slept, I researched. And I considered the hypothalamus.
I was no scientist. But I understood the significance of that piece of the brain. The link between the endocrine system and the nervous system, it regulates the most essential functions of our bodies and hormones. Appetite and weight, body temperature, emotions, memory and behavior, along with the sleep-wake cycle and the sex drive. Plus it manages the pituitary gland which in turn controls the thyroid, adrenal and sex glands. Michael’s hypothalamus had been cancer’s feast. Its every single function was damaged by disease. I wondered if any of it could possibly recover. When I was rational, I remembered all this. When I wasn’t, I was just clawing my way through the hours. But I knew my Herculean efforts were not enough.
We were on our own until March 8th when home health care finally showed up. The nurse was only prepared for an intake interview. Michael was supposed to have a blood draw on the 6th. Now there would be more waiting. The doctor was trying to see Michael could get another Keytruda treatment. The ineptitude drove me crazy. Lost in a bureaucratic nightmare. I was trying to do physical therapy along with basic care. Michael was crabby and angry. He’d yell at me about the way I was getting his pants on and tell me to go away. I’d lose my mind, yell right back and then feel horrible. As my former coworker used to say, I was on my last nerve. The nurse weighed Michael who was down to 179.4 pounds. He was at 201 when he entered the hospital. How could I get him to eat? I decided that fresh air might help. He picked up his walker and started going out on the front porch. So many stairs. I tried to stop him. He threw the walker aside while I grabbed his shirt and waistband. He reeled around angrily and plunged back into the house, almost keeling over. He had no idea what he was doing but had rage that he was so much less of himself. His vision was blurry. He couldn’t understand the television remote or his phone. His memory was shot but his impulsivity was active. Would we both survive the madness?
Our daughter came over when she could, to help, trying to coax him into eating something. Our son was running up and back between Panama, home and Guam. Michael wouldn’t see anyone else. He wanted privacy. But for me, the lonely cycle was awful. Like taking care of someone with Alzheimer’s, with a side of cancer tossed in as an afterthought. I knew the cancer would take over eventually. I couldn’t fathom the possibility of living this way for an extended period of time. I was feeling empty and exhausted, forgetting the substance of our lengthy relationship. What a wretched way to end our life together.
March 10th, 2017 – The reality of this is that I’m pulling Michael through all of this. Absent my presence, he would already be dead. He has no appetite and would neither eat nor drink without my constant prodding. He is disconnected from reality and has no energy. Can any of this recede? Can I get him to the next scan? Does it matter? There’s no cure for this disease. Just buying a little time. That’s the truth. Getting to the actual business of dying isn’t easy. Not for him, me, the kids, anyone. I need a plan. How do I help my kids? What can I do with what’s left of me?
Days went by in a blur. Sometimes Michael seemed lucid and we talked about death and hospice but then he’d forget all about everything. Sometimes I wondered if I’d remember how much I loved this man when at this time, he’s being so angry, frustrated and nasty. I didn’t make the food tasteless and I didn’t give him cancer. Every so often we’d have a normal conversation but then he’d ask when we’re going home. I crashed mentally, dozens of times a day. I reminded myself that I needed to stay hopeless. Early in the morning when I knew he’d stay asleep, I would drive to Crystal Lake Park and cry for about 15 minutes. Then I’d go to Steak and Shake to buy two chocolate milkshakes. I’d doctor them up with an entire Boost and lots of whey protein. I was hiding calories from him, noting that somehow sipping from a straw was better than chewing.
On March 15th, we went to see the doctors. I was prepared for a hospice recommendation but they thought he looked pretty good and showed no new deficits. They recommended a stomach feeding tube which Michael agreed to, stating that he wanted to live. They thought that the first Keytruda infusion was holding the cancer at bay as he had no pain or other tell-tale symptoms. But he needed another one. We scheduled an appointment for tube insertion on the 17th. That night, Michael tried to use his computer for the first time since early February. It wasn’t too awful but he cried, saying he didn’t feel comfortable anywhere. We went to the interventional radiologist for the insertion of the feeding tube but were astonished that his weight had gone up to 189.4 pounds. He took his coat off and got on the scale again in disbelief but the gain was real. My tricks were working. So we decided to postpone the tube. On the way home, he said that he wasn’t hungry but we stopped for food anyway. He ate half a cheeseburger, a few french fries and the bulk of a milkshake. I felt like I’d won the lottery.
The rest of March was a blur. Michael was awake more of the day but that mostly that meant he had space to be frustrated or confused. He said m we should go to the lake or the zoo. We’d be having a seemingly normal conversation when he would suddenly ask if he had an oncologist. Home health care finally sent physical therapists, occupational therapists and social workers. Michael was mad at me because he felt powerless but won’t see anyone if I’m not there. All technology overwhelmed him. We tried practicing cognitive skills with the newspaper. The last current event he could recall was that James Comey was fired. Scans were scheduled for the end of the month. Our son was coming home befor