The Wants

Sorting yourself out takes lots of time. I’ve been working on myself since I was a kid and what I know with certainty is that I’ll never be done. The only way I’ll be finished is if I’m static or dead. And I have a real problem with being static. When I feel myself getting stuck, it’s not long before I feel an irrepressible urge to move, sometimes emotionally, sometimes mentally, sometimes physically or all the ways simultaneously. Inertia is dangerous for me. Lazy patterns have an insidious way of becoming habitual quickly. Waiting for an external push to dispense with those habits can lead to getting trapped in a negative space. For me, asserting myself against that trap is essential.

The pandemic has been a serious challenge to my preferred approach of bursting out of the wheelspinning-stuck-in-the-mud pattern which can sneak up on me. Hampered first by social distancing constraints, and then by the subsequent caution incumbent on those of us trying to be careful, I realized that I was thrown off the track I’d started down after Michael died. He and I used to have long talks about life goals and the significant difference between what we need and what we want. We were well-suited in recognizing that our needs were essentially simple. Wants were a different matter. One of my most repeated lines to him was this one: “I don’t need ya, but I want ya.” That is as true today as it always was. But right now while my basic needs are certainly met, I’ve developed a case of the wants. I can’t get what I most want, which of course is more time with Michael. Absent that denied pleasure, I’m trying to worm my way around these conditions that have derailed me from the path that I was following before March, 2020.

I’ve been weighing the risk/reward balance about traveling during this uncertain time, landing on the side of taking my chances with travel. Although I have anxiety about the demands of an activity-packed concentrated week of constant movement, I’m back to checking out the places I’ve always wanted to see. Going abroad is problematic but there are plenty of destinations to visit in this country. I am headed to Yellowstone National Park in a few days. My golden years aren’t exactly what I’d hoped for but I promised myself that I’d live out some of the dreams Michael and I spun together. The national parks were high on our list. Living the rest of my active life years locked in the house doesn’t suit me. So I’m going to manage the risks of breakthrough Covid infection because I want to keep going on that deferred path. One day I won’t be able to make the trip. But that’s not today.

I want to complete the family history I began which starts from my early life in the 1950’s, continues through the 1970’s when Michael and I began our relationship, and is complete through 1982. I’m about to begin the year 1983, not yet half-way through my life. I still have so many memories to share, the record of my family’s history which will one day be passed along to people I haven’t met. That’s a big want, to finish this chronicle before the memories leave this world with me. The requirements of my days often keep me from writing. I’m wanting to get better at ignoring dust.

I want to continue expanding the list of songs that have a woman’s name in the title, a project that Michael dearly wanted to tackle. The rule is that I have to remember the songs myself or that I hear them in the course of my day. No cheating or looking at other lists compiled by anyone else.

I want to strike the balance between keeping up with current films while going back to watch ones I really loved a long time ago. I believe it’s possible to be present while still enjoying what’s past. I feel the same way about books. Going back to revisit what you loved provides insight into how you got to where you are. I suppose that ultimately I’m trying to straddle time. A tall order to be sure, but it’s what I want now. All those things I consumed made me who I am. I want to remember all the turns in my road.

I want to keep developing my garden and the habitat I’ve created for the birds and the pollinators. I want to keep eating fresh, unadulterated fruits, vegetables and herbs from my own dirt. Wresting back some control from the blight of climate change while I’m able is a small victory, a small difference in a time when it’s hard to figure out how to have an impact on the big issues of our time.

I want to allow myself the indulgence of taking breaks from the overwhelming news cycle. I’m saturated with the negative trends that have prevailed during the past eighteen months, exacerbated by the free time I’ve had to focus on them. I want to let myself drift into irrelevant fictional worlds for awhile. I’m looking forward to season 6 of Outlander. Time travel. Kilts. Steamy romance. Why not? I want to go easier on myself without feeling guilty.

I want to learn more about butterflies and moths. I want to collect more rocks and shells so I can turn them into garden decorations. I want to learn more about art and to increase the breadth of my music knowledge. I want to play more Scrabble games. I want to get all my photos in order and to forgive myself when I get so distracted by a picture of Michael that I stare at it for half an hour and forget entirely about getting anything in order.

I don’t want much in the way of material things any more. I have more than I need. At some point, some of the things that populate my living space will wear out or break and will require replacement. I’m not exactly sure when I got done with stuff. Every now and then, I see a piece of art that I’ll covet and accumulating books remains a problem. Aside from those things, I have little to no interest. At some point, I simply moved on. Fifteen years ago, Michael replaced my engagement ring. I remember telling him that it was the last ring I’d ever want. I’m not sure he believed me. I was telling the truth although I hadn’t given it any thought when the words came out of my mouth. I don’t want any more rings. Maybe my wants are different because of where I am in my life. I guess I’ve joined the generation which chooses life experiences rather than things. Who knows? I think maybe my wants and needs are the same now. Life is an ongoing process. I suppose if something changes, I’ll be moving into a new phase. Stay tuned.

One of those old photos which takes up a lot of my time.

A Break from Warp Drive

Warp One Engage from Star Trek – Getty Images

In only a few days, the 20th anniversary of 9/11 will arrive. Two decades. Feels like a minute. In so many ways I think time has sped up. By a lot. Of course that’s not real. Generally, I think the illusion of accelerated pace is largely driven by technological advances. We didn’t have smart phones back in 2001. No Facebook, Twitter or Instagram, not to mention the multiple other social media platforms that now exist, which all deliver an endless news cycle, 24 hours a day. On that miserable, tragic day, I got my updates through network channels, CNN or NPR radio, along with reading the newspapers. I was home that morning, at 7:30 am central time. I had made breakfast for my son and run to take a quick shower.

Katie Couric and Matt Lauer within moments of the first crash. NBC

The Today Show was on, the one I usually watched to get a quick take on the world before heading to work. Michael was off at college, having started his quest to add certified teacher to his political science degree. My daughter was at a volleyball retreat in northern Wisconsin, preparing for the upcoming season at her university. My son, only 14, tapped on the bathroom door to say he’d heard that a plane had flown into the World Trade Center. I remember saying it was probably a terrorist attack. I finished hurriedly so I could join him. By the time I came out he was nervous, not wanting to go to school. I hustled him out the door, saying he was safe and that if I was right, the targets would have significant national symbolism. We weren’t targets. At least not back then. I also told him that regular life couldn’t stop because of events like these. He was going to school and I was going to work. Before we left our house, the second plane slammed into the south tower. I was pretty shaken but I stayed as even as I could to bolster his confidence.

The four of us – 2001

After dropping him off at school, I hurried to work where my office mates and I gathered in horror around a small television, watching events unfold on network news. We didn’t have cable. Michael called me from school because he’d heard rumors about an accident in New York. My daughter called from the retreat lodge to ask what was happening. We were all using landlines for decent reception. That day was hardly a simpler time, nor was it a slow-paced time. But what felt different was that terrorism was an identifiable threat, associated with those who had major issues, at least with western governments. These days, the world of bad actors seems to have exploded exponentially and anonymously, as technological development continues its constant evolution. And the targets are just anyone who’s vulnerable. Not just political axes to grind. Greed and and simple criminal behavior have been added to the terror mix.

RoboKiller app from my phone

Every day a relentless assault by untold numbers of crooks, con artists, scammers, trolls, bots and sources I can’t name, cascades through your technological life. I realized the other day that fending off these hostile intrusions is taking up a ridiculous amount of my time. Now I’m no luddite, one of those people who reject technology, choosing to be a non-participant in this digital morass of a world. I do worry about too much screen time for kids, short attention spans and people who prefer to read paragraphs rather than books. But I am keenly aware of the benefits of being plugged in and so far, those benefits outweigh the drawbacks. However the drawbacks are piling up rapidly. Yesterday the spam-blocker I installed on my phone weeded out 17 calls. Only one or two callers left messages, which were intended to make me afraid about something financial. I get text messages now too, along with phony phishing emails. I’m pretty careful about opening anything and have downloaded a VPN program so I can alter my IP address whenever I choose. How pathetic is it that I’m turning my phone and computer into mini-fortresses to protect myself from the scammers? Pretty sad.

Facebook ad

In addition to the people doing the illegitimate theft attacks, we have the mysterious algorithms embedded in seemingly every software program used by the average user. Recently I realized that my Facebook feed had become nothing but a platform for advertising. I barely see posts from friends. I thought I’d applied every privacy setting I could, but apparently I left a gap big enough to be exploited by the ever-eager hawkers of streaming services, clothes, shoes, and even intellectual property. My emails are full of ads too. Daily I dump phishing emails into my junk and spam folders, including ones that seem to be from a bank or the government, occasionally scrutinizing them carefully as often they look so real, I hesitate before deleting them. Those are from people who want to steal your money, your identity or both. I’m sorry to say that I’ve already had the miserable experience of digging my way out of both those unexpected assaults. To preclude them ever happening again I’ve made it almost impossible for anyone, including me, to access any credit. I’m not naive enough to think that dastardly scams are a new phenomenon. I just think that technology has given slick swindlers a huge anonymous platform with which to ply their sleazy trade.

Facebook ad

I guess I’m grateful that I still have the mental capacity to work my way through all the seamy parts of this world. I worry for the innocents out there who are sitting ducks for those cynical crooks who make their way through life by taking advantage of others. I’m lucky to have awareness. But lately it’s simultaneously the proverbial gift and curse. The past two decades have released a torrent of challenges for me and everyone else. I’ve tried to keep up with what’s going on in the macrocosm as well as in the microcosm of my little life. I think it’s fair to say that I’m pretty jaded about the state of humanity, or perhaps rather, the lack there of. By nature I’d say I’m a realist with a strong streak of pessimism. I don’t have a lot of confidence that a significant number of my fellow US citizens will ever see life as I see it. And to be frank, I don’t have any patience left for those whose ideas make no sense. They have no fealty to the public good, but rather consistently put themselves first, regardless of the fact that they believe lies and most especially, are willing to put people at risk of death in order to proclaim their freedom. They’re willing to risk even innocent children, who have no protection from Covid except the safety of being with people who are vaccinated. I don’t think they understand that the current surge falls squarely on those who aren’t vaccinated and won’t wear masks. Their stubborn adherence to their “individual freedoms” are placing huge burdens on their communities, their families and friends, and their medical support systems. As incomprehensible as that seems, what I know is that the daily spread of false information by our technology and our social platforms has created societal chasms that are unlikely to be mended. The additional drawback to technology is that it accelerates the spread of the divisive, poisonous calumny that threatens public health.

Sometimes a step back from this relentless assaulting technology tsunami is mandatory. I turn to nature, although admittedly, alarm about climate change is rarely far from my mind. Still, I have to do what I can. Aside from being available for my family and friends, I can work on my little corner of the planet, to provide as much sustenance and safety for the other creatures with whom we share this vulnerable blue ball. I feel more settled and calm when I’m outside, watching the lives even smaller than mine, unfolding in front of me as they go about their business. On my little hiatus from the grind of foiling predators, eliminating hawkers of lies and unnecessary garbage, the photos to follow were the healthier options I chose instead of screen time. I hope you enjoy them.

Milkweed seeds

In Search of A Day

First photo of my day – through the bathroom window.

Lately the days seem to be melting into each other. A combination of the impossibly relentless news cycle, flipping from climate change, to Afghanistan, to voter suppression, coupled with the unending Covid madness, mask wars, rising infections and people ingesting horse de-wormers rather than getting vaccinated, is enough to blur time, at least for me. That big picture is never out of my thoughts, nor do I want it to be. Bearing witness to what’s happening is as natural to me as breathing. Even though I’m not liking much of what I’m seeing, at my age, a new habit of turning away is unlikely. At the same time, I’m aware of the desultory slippage of time that comes from being weighted down by all the worries. I know worrying is unproductive. So how do you establish the balance between responsible, attentive citizenship and mental health management? I’m working on it. I don’t like this weird blending of days into one another. So I decided to track one day, to prove to myself that there is still some semblance of normalcy. One caveat – for the past several days, I’ve been in the midst of having both my house and garage roofs done, for the second time in four years. Hail damage was discovered after a leak appeared in my garage – it’s taken months to get the contractors out to my house as there are so many people in my community who experienced the same problem. When the roofers arrived, subjecting me to constant banging, the hurling of materials into my garden, and ultimately disconnecting my satellite dish for five days, I’ll admit I felt irritable. But here goes. The first photo of my day was the one above, when I saw the wispy clouds floating past my bathroom window.

After getting myself organized, I went out to run some errands. I look up frequently because I’m obsessed with cloud formations. I’ve been that way all my life. The thought that I’m taking the same photos every day crosses my mind occasionally, but truly, I’m always awed by the beauty of the ever-changing wide skies on display in the Midwest. Sometimes I think about the wind currents moving the clouds along and other times I marvel at the fact that the earth is rotating slowly beneath my feet. Maybe the clouds I’m seeing will hang together as they are and wind up catching someone else’s attention miles away from me. The idle thoughts that drift through your mind like the clouds overhead.

Parked in front of my destination pharmacy was the only vehicle I’ve ever coveted. I’ve never really cared much about cars. My attitude has always been utilitarian – I just wanted a safe, reliable method of transportation. But some years ago when I first saw this lemon yellow Thunderbird convertible, I was consumed by desire. Such a simple, sleek design. I imagined myself tooling around town with the top down, my hair blowing around. This car makes me think that if you gently pulled the steering wheel toward you, you’d slowly ascend into those cloud clusters high above, suddenly airborne and free as a bird. I’ve seen a powder blue one, along with a red, a black and a gray, but the yellow is the one I’d choose if I wasn’t practical. Next life.

Before moving on I caught a few more cloud shots. I drove around for a couple of minutes to get them, making sure music was blaring during my brief foray into the beautiful park that provides the backdrop for the most relaxing part of my day, lap swim.

Being the person who shows up first for the limited lap swim hours is one of my favorite things. For those moments I get to pretend that the whole pool is mine. Of course there are the young adorable lifeguards with whom I chat daily. Hanging out with them is instructive for all of us. I get to hear about how they look at the world which helps me understand the actual pulse of these kids who are going to inherit the world people in my generation will be leaving behind. And I get to tell them all kinds of stories, in addition to offering unsolicited advice and opinions in the hope of broadening their outlook. I think it’s a win-win situation.

My favorite lifeguards.

The pool is a meditative place. I usually get the bulk of my laps done before people I know arrive so I’m deeply immersed in my mind as well as the water. Often I’m looking at the birds and butterflies overhead, while watching bees, wasps and damselflies swoop down for a quick drink as they go about their business. Occasionally they need to be scooped back onto the pool deck when they overshoot the ledges and flounder in front of my face. But mostly I’m in my memories of Michael because we were in that space so often, as twentysomethings, as parents and as grandparents. I’m so happy I had the foresight to snap a shot of him just before he submerged himself in a pool a year or so before he died. The sensation of his presence is palpable when I’m in the water, as if at any moment he’ll pop up in front of me with a crooked part in his hair, one eye closed against the sun and his teasing delight at having startled me. This is my favorite part of the day, even the ones that have blended together.

After pool time, weather permitting, I spend time outside. Lately, weather permitting has a broader definition for me. I draw sustenance from the natural world. My yard and garden, the results of four decades of laboring in the dirt, are designed to attract pollinators. I love birds, so interspersed throughout my space, which I’m willing to admit is too large for one person to maintain, are multiple seed and suet feeders along with a nectar feeder for the hummingbirds. I want to be out there. The long slogs of triple digit temperatures and wilting humidity have made for an uncomfortable summer. I go out to work only to find myself driven back inside, soaked with sweat and filthy. My tolerance for these conditions has definitely receded. Back in the old days, I could push myself for hours, no matter how gross I felt. Not now. I’m good for maybe two hours. On this day, I chose to split time between looking for flying visitors, grumbling about the roof debris and pulling some weeds. Watering my garden has been almost a daily event as we alternate between totally dry stretches and the occasional rain torrent. First, the roof collateral damage and time in the front yard.

I always like the bad news first. I wandered around my yard, dodging debris which was being randomly tossed from above with no warning. I took photos to document the mess. I tried hard to remember that this would all end, that stuff was unimportant in the long run, and that smashed perennials will very likely come back strong next year. I spent time hunting for stray roofing nails as well as regular ones, hoping to protect my car tires and my feet. Stepping on a roofing nail is no fun. Somehow they sneakily emerge, years after the roofing job is over. Truly, I did worry about the crew working in miserable conditions. A miserable, difficult job. I yanked a few weeds and then decided to look around for what is always pleasant, despite the heat.

Looking for monarchs when a hummingbird flies into view.

Moments like these are spectacular. I’m invested in continuing to create and sustain a welcoming environment that will support these delicate creatures who are threatened by climate change and habitat loss. I feel great when they show up individually so I’m joyous when they arrive together or en masse.

Monarch and bee sharing the same blossom

The next part of the day took me to the backyard. Occasionally I’ll sit for a bit in a chair on my little deck. I do best when I pop headphones in my ears for several hours, listening to an eclectic collection of artists and genres on Pandora. The familiar tunes lead me on what is, for the most part, a kaleidoscopic tour of my past, from childhood to recent years. I’m happy to be exposed to music that’s new to me as well. One of my goals is to stay culturally current and fresh. Being stuck at some point long ago is not, in my opinion, conducive to continued personal growth. I don’t want to be stale. While I sit, I play scrabble games, as many as I can get. Word games keep my brain nimble. After awhile, I’m back to checking out my garden and its visitors.

I think being in this space must be comparable to the benefits of what is referred to as forest bathing. Although I note urban sounds in the background, I’m mostly away from those distractions. I’m still thinking, but my attention is directed to thoughts of what I can do to improve this haven. I’m also trying to identify insects I can’t name, learning to distinguish the slight differences between male and female butterflies and comparing this year’s visitors to last year’s. My version of a job with a purpose. Small scale backyard science.

By late afternoon, I’m in my house. I catch up with the day’s news. I read a lot, do my homework based on the day’s thoughts and discoveries, and I write. A lot. I feel sorry for my kids, thinking of all the journals which await them when I’m gone. Unless I have a dinner arrangement, I keep things simple. I scrounge around for whatever food is around. I’m kind of cooked out after years of meal preparation, although to be fair, Michael carried a lot of that responsibility from the middle of our life until his end. Unless I have family with me, which stimulates some deep-seated maternal gastronomic response, I can be satisfied with a bowl of cereal.

I’ve attended a number of online classes and seminars, signing up for a new one just recently. Most evenings, I’m just home. I chat with family and friends, binge watch television shows and continue to tackle assignments I’ve given myself, sorting through the accumulations of over forty years of living in the same house. I’ll knit a bit, a great hobby that makes you feel like you’re doing something while you’re doing almost nothing. An art project here and there and the next thing I know, I’ve found a full day. When I retreat to my bedroom, I still call out to my endless partner, and ultimately, read until I can’t any more. Then sleep comes. For the moment, this is my day which I’ve separated from the fog of all the pandemic ones which feel so the same. Eventually, I hope for more variety. Right now, I just feel satisfied that I can recognize the components that separated yesterday from today.

The Unexpected Patient

My bed in Michael’s hospital room.

No day goes by without my thinking about Michael. After more than four years, though, I’ve emerged from thinking obsessively about the last months of his life, especially the 32 days when he was hospitalized in 2017. I lived with him in his room, as he was too ill and often too confused to make good choices about his daily needs. Being present for absolutely everything that happens to your loved one is a huge challenge, along with constantly interacting with the medical staff, who routinely enter a cancer patient’s space, day and night. Some time back then, one of my son’s friends from childhood, a woman who’d become a nurse, asked me if I’d write a descriptive piece about being an individual caring for a terminally ill family member. She wanted to share it on her podcast for both novice and experienced nurses. I ran across it today and decided there might be a benefit in sharing my thoughts on this blog. Almost everyone will one day be in a position of patient or caregiver. In our personal experience, we were fortunate to have developed warm personal relationships with several nurse and techs, with whom I still remain in contact, years after Michael’s death. Thank you, Melinda, Jenn, Vanessa, Vinnie and Michael. Those people are the backbone of the hospital, working long shifts under constantly stressful circumstances. I’ll never forget those special people who worked so hard for us. We were the lucky ones who got to go home which was all Michael wanted, to be in the comfort of his own space rather than in a sterile alien room. So here is what I wrote for the nurse’s podcast.

“Nurses and caring for the families of the seriously ill.”

So the challenges of nursing school are behind you and you are credentialed and ready to ply your skills. You’ve specialized in oncology care and are now assigned to the cancer floor where for a time, you’ll be paired with an experienced nurse who will help you get the feel of the unit, supervise you while you practice the administration of chemotherapy/targeted therapies, teach you to work with various feeding devices for patients unable to ingest anything orally, and instruct you in monitoring the multiple vital signs made more complex by the severity of the patients’ conditions.

As you go through your 12 hour shift, an unexpected gnawing anxiety starts brewing in your gut as you go about completing the checklist for each patient, examining the chart to ensure that the proper medications are delivered and taken, and making astute assessments intended for the attending physicians who will be coming to do their rounds. The anxiety isn’t what you expected – it’s unrelated to the sick person lying in the bed. The worry is for the unexpected patients, the family members and loved ones sitting anxiously in their bedside chairs. They are frightened and ill-prepared for the experience in which they are immersed, thrust by one phone call from the doctor’s office following a scan, a biopsy or a blood test, into a world of complicated words, strange equipment and unfamiliar science. Wives, husbands, partners, children and parents of these newly, and often suddenly sick people, were leading a normal daily life that now resembles nothing of the familiar. Their person in that bed looks different, perhaps bald, perhaps with the weeping skin of the newly-radiated, perhaps missing a body part, perhaps covered with the pustular rash of allergy to a new medication. And they hurt. Their meds make them nauseous and loopy and they say strange things. Their mouths may hang slack and open, their tongues covered with cloud-like patches of thrush. Their skin is delicate and papery and there are bruises from too many needles and IV’s. Their bodies may be skeletal. The people next to the beds are being forced to adapt to cancer, the great equalizer, the disease that is robbing their loved one of what was once “normal.” Vitality is replaced by weakness. There is silence. And except for brief conversations which are often vague and unsatisfying, they are separate, alone in the oddest way, right next to their companions, alone and frightened. The unexpected patients with no one designated to tend to their needs which they haven’t begun to understand. They are sad, short-tempered, grieving and angry.

You weren’t trained for these people’s needs. You watch your mentor for clues. Some of them perform their chores with efficiency and little acknowledgment of what is clearly an issue right in front of them. Others make an attempt to say something comforting. You notice a look of irritation on a wife’s face – whatever the nurse said was evidently a poor choice for what that woman needed. This is a common situation that occurs every day in hospital rooms everywhere that house the sickest patients, with their desperate families beside them, needing support and answers as they face the likelihood that death is the probable outcome for that family member lying in front of them. What are you supposed to do for these people? As the wife of a patient with Merkel cell cancer, which after years of remission and relapse, reasserted itself as leptomeningeal carcinomatous cancer, a devastating presentation with a survival prognosis of 4 weeks, we were stunned. Although I knew something was seriously awry with my suddenly strange partner, the cancer had escaped all the scans. Finally an ER visit, with me pressing for more analysis, secured the brain MRI which revealed the dark truth. I spent 32 days and nights in the hospital to advocate for my husband. I learned valuable lessons about what works, and what nurses can do or shouldn’t do, to help people like us. Here’s a list of suggestions to help you ease your own anxiety about working with these patients and their families and to truly sustain those who must bear up under all the pain and worry.

1) Acknowledge the family as well as the patient. Try explaining what you’re doing and why you’re doing it. Don’t just give them a perfunctory greeting and act as if they’re not there watching what you do. Knowledge empowers them and helps them understand what to expect.

2) Listen. Take a few minutes to ask the family what their concerns are, whether they understand what’s happening with their loved one, whether they need more information or assistance from the social services available in-house. Then help them make the connections they need.

3) Don’t assume that your belief system will work for everyone. Don’t offer the tenets of your religious preferences and ideas to the families. If they express an idea which seems in common with what you believe, you can share. But otherwise, keep those thoughts to yourself. Nothing is more offensive than being told what to think or feel by a nurse or doctor who doesn’t know your private beliefs. Never presume. The families feel more alienated and unhappy. Assuming you know their personal views creates more distance and discomfort.

4) Pat a hand or a shoulder. Sometimes there is simply nothing that you can say that will be of any real benefit to the family. But a pat on the hand or shoulder provides invaluable human contact which makes a person feel connected to the world. The human touch is critical as the very ill patients often cannot provide a reciprocal touch or hug to the people sitting next to them. The loneliness is profound. Having a brief friendly touch can help allay the increasing isolation. Of course, there are limits to be observed, but they should not preclude basic kindness.

5) Be proactive in seeking the assistance of your medical teammates. If you feel that a family member is in trouble, consult with those in counseling or pastoral care. Have them pay a visit to the patient’s room to see if they can offer support and advice. Often, the family is too befuddled to ask for personal assistance because the needs of the patient are dominating their thoughts. Self-neglect is frequent and undermining to the health of the watchers.

6) Empower yourself. Read and explore what is to be expected when a family is facing death. As with anything else, knowledge is power. American culture has a poor track record regarding the normalization of death. As a result, it has taken on a mystical and alien spot in our collective consciousness. Our own issues about how we feel about death and loss can clutter our behavior toward those actually experiencing the despairing feelings incumbent on their current situation. By demystifying your own understanding, you will feel more comfortable with the people you’re serving. Shutting down and acting as if death is business as usual is a convenient way to avoid your own fears and discomfort. Owning your feelings and confronting them can make you a much more able nurse and source of relief to those in the midst of facing death. Mutually beneficial acts are the goal. Breaking down some of our internal barriers can relieve the anxiety and feelings of inadequacy that arise when things get rough. So, these are some views from the patient/family perspective. On our journey, we were lucky to have some exceptional nurses who were able to grapple with both the tough and simpler parts of my husband’s illness. Others were less than adequate. I hope my thoughts are helpful to you who have chosen this powerful and impactful career.

Our family at Michael’s bedside shortly after diagnosis.

So that’s what I wrote for my son’s friend’s podcast. I hope someone out there who’s reading this will find a valuable nugget whether you’re a nurse, a patient or a family member, by blood or not. Everyone needs support, especially in this complex world.

Life on Broadway – Chapter 4 – 1982

Imagine my surprise when I discovered that I could fall in love with a baby after a significant amount of ambivalence about the whole motherhood business. I was never one of those people who thought I couldn’t have a full life without a kid. And then we went ahead and made one. I knew immediately that I’d delivered the greatest baby ever born who’d caused me to unearth a part of myself I’d never quite imagined. I was always loyal and ferocious about the ones I loved. The way I felt about this little girl was beyond all that. I think I tapped into inexplicable primitive emotions that are triggered when someone is dependent on you for living. I don’t know. Maybe it was just another level in my natural intensity.

In the beginning of 1982, Elisabeth was just over 4 months old. I was reluctantly back at work, mostly because I had misgivings about her babysitter, Lilian. When I would show up on my lunch hour to nurse my baby, the sitter would stand behind us, doing her best distracting behavior. She was taking care of a few other kids so I thought she’d get the importance of this time for us. Alas. I believed she was developing an inappropriate emotional attachment to my baby as she mightily wished for a daughter to add to her two boy crew. Finding child care for infants was tough. When chickenpox popped up among the other kids in Lilian’s care, I kept Elisabeth away until the contagion issue was over. I brought my girl to work with me which was a gift in an all-women office where these daily problems of mothering got a sympathetic response. My anxiety over Lilian’s attitude increased when she piled all her other day care kids into her car and unannounced, dropped by our house to check on mine. The hunt for a new caregiver began.

By spring we’d been lucky enough to find a day care center which had an infant room. We worried about the illness odds that would increase exponentially because of exposure to so many kids, but were less afraid that our baby would be stolen by a person with emotional problems. A struggle with persistent ear infections began soon after this switch. While visiting my parents in Chicago she got her first bad one. She ran very high fevers and I cried the first time this happened. I had to toughen up and get ready for the many “firsts” to come. That visit to Chicago was for about a week in late March. My dad, who’d had five coronary artery bypasses three years earlier, had been experiencing angina attacks. I wanted to be with my folks in advance of an appointment to explore his problems. They were both fools for this baby. Michael was unhappy with our leaving, concerned that a week was too long and that he’d be forgotten by his kid, out of sight, out of mind.

My father’s appointment went poorly. Three of his bypasses had shriveled, necessitating another surgery to replace them. He was hospitalized and furiously mistrustful, accusing the doctors of all kinds of malpractice and refusing to submit to the procedure. He was stubborn and impossible. But he loved my baby. We drove to the hospital, where he was lying secluded in his bed, all the drapes pulled around him, isolating him from view. When we walked in, I pulled back the curtain. Like a game of peek-a-boo, Elisabeth let out a shriek of delight when she saw her grandfather emerge from nowhere. He, in turn, was thrilled that this little kid had immediately recognized him. She was the convincing factor in getting him to take his chances with another surgery. The operation was scheduled for the next Monday, leaving the weekend open for a visit from Michael. I’ll never forget their reunion. My mom had E. in her bedroom when Michael arrived. After greeting each other, I stayed in the living room so he could have some moments for just the two of them. When he walked down the hall and turned into the room, I heard E’s piercing screams of recognition. Michael was joyous and both of us marveled at how there were people who thought small babies were just blobs. Not this girl.

I stayed in Chicago for dad’s surgery, entertaining E. in the cardiac waiting room for hours. I actually felt like having a lively baby around was good for the anxious families. Dad, referred to by his surgeon as a tough old bird, survived and did well. Next, we had a brutally cold snap hit with heavy snow and below freezing temperatures and miserable windchills. I remember us driving home in terror that April, fearful that our less than fabulous car would break down, leaving us with a frozen baby. But we made it back without problems.

Semper crib toys from Sweden

Meanwhile, in the midst of the angst about babysitters and sick parents, Michael and I were deeply involved in studying the little person we’d made. Although we didn’t get pregnant when we’d hoped we would, we realized that having had almost ten years on our own was a great gift. We’d had a lot of time to learn about each other, to establish a strong foundation for handling the inevitable conflicts that arise between parents who grew up differently from each other. We’d also had lots of fun – trips, partying, rock and roll concerts and lolling around together doing everything that comes with love. So we were pretty focused on our kid. Michael was worried that my aggressive personality would dominate our child-rearing. Hmm…He insisted we were splitting her straight down the middle. I called him Mr. Fifty-fifty which really annoyed him. We used cloth diapers which we felt were better for the baby and the environment. Both of us did diaper duty. One time, I was looking down at her, talking and engaging her when suddenly her smile crumpled. That’s because I put a diaper pin straight through her tender skin. Ugh. Michael liked doing baths and arranging hairstyles when she had enough to arrange. He especially enjoyed presenting her like Alfalfa from the Little Rascals or Pebbles from the Flintstones.


I was busy looking for personality traits. Elisabeth exhibited determination early in her life. I used to place a toy just out of reach when she was just a few months old to see how she’d respond. Michael said I was sadistic but I was mostly curious to know about her. She couldn’t really crawl but she’d get a bead on what she wanted and manage to wriggle herself forward to get her hand on the desired object. We bought these Swedish crib toys from a company called Semper. A thick red rod was attached to the crib sides. Large red screws with backs were used to tightly adhere stimulating activity accessories to the bar. One was a ball spinner with yellow rods and green globes. When one was hit another would immediately appear. I remember the first time she reached the first ball. A major effort. Ultimately she hit the balls so hard that each one was whirling like a ferris wheel. The music box had a round blue pull loop. Initially she’d make contact with it and a musical note sounded. Over time, she understood that the harder she pulled, the more music came, in addition to the sun and clouds shifting from side to side. Listening to a baby learning and being self-motivated was wonderful.

Spring came. We’d go outside to sit in the yard. Elisabeth was afraid of grass for awhile, always staying on her blanket. One time, as I had a strong aversion to stinging insects, I jumped up and ran when a couple of bees circled us, leaving her alone on the blanket. Not exactly a testimony to maternal instincts. Living that down took some time.

As my dad grew stronger, we spent lots of weekends visiting my parents in Chicago or alternately, having them visit us at our home. Having extended family nearby was a gift. They loved being with her while she never was fearful around them as they were so familiar. Elisabeth started changing rapidly as babies do, practicing crawling and pulling herself to a standing position. Verbal and responsive, we taught her about feelings, what was happy or sad, worried or confused. A natural ham, she had high entertainment value.

We had taken over most of our house except for one apartment where our friend Brian lived while he was in graduate school. He was part of our family and spent lots of time with our kid. Michael especially, so unused to an intimate family life, was finally realizing his dream of truly being part of an integrated loving world. Despite the normal adjustments to being parents we were pretty much blissed out that year.

I remember applauding each step of Elisabeth’s development that subtly changed our daily life. Crawling, practicing walking, dancing to the ever-present music in our house was fun. We were often tired but the kind of tired that comes with exhilaration. Michael and I had vowed to keep our relationship on the front burner so we had a date once a week, ever mindful that one day, life would go back to being just the two of us. Spring and summer went fast. Before we realized it, the first birthday was upon us.

My favorite photo of my girl leaning on my knees. Those eyes.

I don’t know why, as we planned that first birthday party, I decided to chop off my long naturally wavy hair for your basic curly mullet. Maybe that felt like a more maternal hairdo. In any event, we had a big bash with lots of family, friends and their kids. I had two cakes made, one for the guests and one which we hoped Elisabeth would dive into, face-first. Ironically, she was hesitant, which wasn’t usual. Maybe there were too many people around. She was also frightened of the wooden rocking horse she received. The hazards of wretched excess on my part, I suppose, as I couldn’t imagine anything more wonderful than celebrating our girl in a big way.

So just like that, age one came and went. My parents stuck around for a few extra days to enjoy more time with our sprightly kid. Now we had a walker with all that implies, in terms of getting busier and taking more precautions as our scamp was exploring the attractive corners of the house. Part of having a portable child is the security of knowing you have some measure of control over scary incidents. I think you only figure that out when it’s behind you. Living and learning.

In early September, we made a trip up to Chicago where Michael and I took advantage of my parents’ fascination with Elisabeth. We dressed up and went out to visit with our old friends who lived in the city. However, I wasn’t remotely prepared to spend a night away from our baby as one, I was still nursing her, and two, I just didn’t feel the time was right. I couldn’t understand those parents who were able to be apart from their babies. I felt most strongly that until little ones acquired communication skills, they were really vulnerable. I needed a few more years before I was ready to make that choice and Michael was in agreement with me. Anyway, he was utterly dazzled and wrapped around the tiny finger of his Diz.

October came along with Halloween. A tiny broom and a pointy hat were all we needed to do a costume for our little bewitching kid. I brought Elisabeth to my office that day as my mates were always glad to see her, especially she’d spent time with everyone during the chickenpox quarantine.

The next few months were full of events. In November, we joined my extended family for Thanksgiving in the south suburbs of Chicago where my brother lived with his family. Elisabeth was the littlest cousin who got to sit at the kids’ table for as long as she could be still. Food wasn’t particularly important to her. Playing was her thing.

December was a slow month. We snuggled in for the winter. Our girl was quite a character. She loved looking at books, listening to music and building towers which went straight up, as opposed to exhibiting any geometric configurations. Looking back, it’s easy to see the roots of her later preferences which were obvious from an early age. We were getting ready to transfer her from her day care center across town to one a mere half block from my office and two blocks from home. The good news was that one friend from there was coming with her, the beginning of a friendship that has lasted her whole life to date.

I remember so much about this first year of parenthood. Firsts of everything. First sickness, first rolling over, first crawling, first walking, first words. I was over the moon most of the time, buying expensive baby clothes at the kid boutique, ridiculously priced shoes at Andy’s Shoe Store because you only get one pair of feet, and generally trying to make sure my kid never wanted for anything the way I did. Certainly at this age, all that was preposterous but classic in trying to fix the issues we all carry from our own childhoods. Michael was also trying to work hard on being engaged and close to his daughter, erasing the emptiness he felt as a kid. The two of us were growing together which was such a bonus. We were lucky. Our relationship was strong and effortless, a great way to start, knowing that there would be bumps in the road because that’s how life works.

We celebrated Hannukah at home, with Elisabeth receiving her bunny Frances, who became one of her favorite companions, along with her soft, squishy doll Abby. Next there was her holiday party at her day care center which was mostly ridiculous. What was clear was that the kids had no clue what was happening. In one photo below, she’s sitting next to her friend, Marie Louise, with whom she had a play date. I remember that her mother told me that she would serve them spaghetti for lunch and that I should know she always washed her hamburger meat before cooking it. I was glad to know there was a mom who was crazier than me.

So 1982 came to an end. Michael and I went on a hot date for New Year’s Eve. Looming was 1983.

Wish You Were Here…

Dear Michael,

I’m sitting in our living room, spooling memories in my head. You know how I am. All those visuals I can access from inside this peculiar brain of mine. My gift and my curse. I’m thinking back to April, 2017, when there was that brief window when we could have truly lucid conversations for short periods of time. Those moments when the relentless cancer working its way through your brain paused after all your hideous treatments, and we were able to discuss what life was going to be like for me once you were gone. Even though neither of us could really believe we were cornered with that miserable reality, of course. Resignation was never our thing. You were so worried about me, when you could stop being so troubled that after all the years, you were going to have to give up on living. Not that you really did. Ironically, a part of me clearly hasn’t given up either, as your essence is clearly in permanent residence inside me. That’s all well and good in many situations. Recently, though, I’ve really needed to purge myself of these big thoughts which are frothing around, burbling in the deepest part of my gut. After watching my mother be so sick with her anxieties that manifested in dreadful ulcerative colitis, I know I have to release these so I don’t follow her path. You remain my refuge, my safe place. Watching the writhing world right now with its massive, overwhelming issues sends me to you. Of course, I’ve been writing you for years, but this one is for those who are either like me, craving the comfort of being truly heard while being isolated, or reminding those still lucky enough to be safe in their cocoons with their go-to confidantes, that they are truly fortunate.

I remember this anti-war protest from almost ten years ago. We talked about getting our grandson, just a scant year old, used to what we believed would be a lifetime of civil disobedience. Just like ours. Kid number one had already joined the resistance. I remember your parents snidely telling us that they hoped our children would give us as much grief as we gave them. Fortunately that never happened. Right now US involvement in Afghanistan finally appears to be coming to an end. After all these years, the Taliban has overrun the country with lightning speed, making the withdrawal of our troops and allies a ghastly and terrifying mess. I can’t yet fathom what this new configuration will mean in the long run. Meanwhile I feel terrible for the families who lost loved ones in that quagmire during the past two decades, who feel the tragic futility of those losses, not to mention the Afghanis now on the Taliban hit list. And the women. Can everyone join this terror-fraught exodus into refugee-ism? What can I do about anything? Maybe donate money? Feeling pretty ineffectual. This stuff doesn’t get easier with age. If anything it’s more disappointing.

Photo by Tom P.
Photo by Tom P.

You were with me back when these photos were shot by our old friend Tom. I recently connected with him after almost 50 years, back from those early days when we were first starting out. I think we’d been together about a year when these were taken. Me with a bullhorn. Seems appropriate, right? We spent a lot of our lives protesting, fighting the good fights, big and little. I can’t say I have as much optimism as I once did. I’m cynical. But I read somewhere that hidden inside every cynic is a closet optimist. I’m trying to hang on to that thought. You were still alive when the Women’s March happened, right after Trump’s inauguration. That was just before your health nosedived.

You’ve missed a few since then. On a miserably cold, wet day there was the March for Our Lives rally advocating gun control as the mass shootings nightmare has continued in your absence. Then last year, in the heart of the pandemic, there was the Black Lives Matter demonstration to protest the relentless targeting of black males by law enforcement in this country. I masked up and went because I just couldn’t stay home. So much injustice. You’d be proud of our family who’ve all spent time pounding the concrete to honor their principles. We did good with them. I wish you could see them as they’ve evolved. Maybe you can.

Along with these pressing issues, the continuing dystopian politics of the conservative right continue to have an impact on everything from voting rights to COVID. The media cycle is rapid-fire with disinformation being peddled at a furious pace. Tonight I saw a statistic that was truly unnerving.

Mississippi officials warn against using ivermectin for COVID-19 amid spike in poisonings. – The Hill.

Fox News has been reporting that a medication used to deworm horses is an effective treatment for COVID. So, in one of the states with the lowest vaccination rates in the country, we have people buying this animal medicine and making themselves sick instead of opting for real drugs like the vaccine which, despite all their clinical trials, are viewed with mistrust. Can you imagine that? Remember how an off-trial drug brought you back from the brink of death and got us the unexpected gift of more time? The cult-like followers of Trump who are entrenched in a cluster of twisted lies and disinformation are enough to make you feel like there’s no such thing as critical thinking skills. Blind followers and sycophants. I’ve never felt much like a mainstream person in most areas of life but now I feel like this is a sci-fi world. What will I wake up to in the morning? Crazy headlines. Every single day. The pace of life feels accelerated, even with the last year’s lockdown. Climate change is here now, not coming soon. Wild weather patterns, fires, floods and heat domes are daily occurrences. Tonight I read that instead of snow, rainfall was recorded for the first time in Greenland. The CNN photo below shows the rainwater running over the ice. Greenland is melting. We’re having the hottest months in the hottest year ever. Aging has done nothing to make me more heat tolerant. Our 30 year old air conditioning is amazingly still working. I am deeply grateful.

I remember when we’d feel something bothering one of us, we’d check in with each other, inquiring about the “disturbance in the force.” That’s how I feel every day now. Unsettled. Uncertain. There are mini-culture wars playing out about mask-wearing. Literally wars where people come to blows about their differences in stores and restaurants and on airplanes. About masks. The mind boggles. Yesterday I watched a newsclip about airline stewards taking self-defense classes to protect themselves from unruly passengers. Flight rage in addition to road rage. Sometimes when I’m out in my COVID-limited routes, I perceive this undercurrent of uneasiness. Strange feels from people, some wandering the streets, others working, but resentful, hostile. I imagine this is what combat fatigue is like, utterly draining. I know that many people are turning away from news, trying to block out what feels scary and overwhelming. Unmanageable. I can’t do that as you know. I feel like it’s part of my responsibility as a member of my community to pay attention, even when it’s awful. Too many people have looked away from too many wrongs as far as I’m concerned. But I admit that all this alone time can feel pretty oppressive with the weight of the problems facing humanity, whether or not they choose to be aware of the weight or mindlessly ignorant.

A while back, during my moments of missing you desperately, I edited a couple of pictures of you with that special warm look in your eyes that is so like an embrace. I spliced the one from the time you were 22 with one when you were in your 60’s. On a small bookshelf in the corner of the living room, those eyes of yours are boring right into me. The picture is angled so no one else really notices it. I can be here but part of me is off with you. I’m looking at it right now as I write this. I don’t care what anyone thinks about these little ways I stay connected to you. I must say that lately, my props are inadequate to the task. I swim and garden in the daytime to distract myself and have occasional lunches and dinners outside with friends. At night, I hole up in the house, writing or reading, watching television. I watched a lot of the Olympics and I watch tennis although that makes me miss Roger. I’m still in my book club and still serving on a city commission but sometimes I just feel as though I’m tethered to the earth by the most gossamer of threads. When I head upstairs to our room, invariably I say your name out loud and still sleep only on my side of the bed. I’d pay a steep price to lie in your arms and talk about everything instead of just writing these letters. By now there are hundreds, some short, others winding along. And I write down all the dreams in which you appear, along with the odd COVID dreams. The other day, I wrote a blog called Magic Realism which is a partial explanation of how I’m getting through all this. Now that I’ve unloaded for the night, I’ll close with a line from Isabel Allende’s “House of the Spirits.” I think of you as I write it: “She was one of those people who was born for the greatness of a single love, for exaggerated hatred, for apocalyptic vengance…” You recognize me, don’t you? Goodnight, my love and thanks for still holding this space.

Magic Realism

Today, I allowed myself the privilege of going outside to sit still for awhile. To do nothing. To sort out the meteors of thought shooting through my exceedingly unquiet mind. Lately things have gotten to be a bit too much. I can’t figure out what to think about first. Covid? Climate change? Neo-fascism? How about something personal to me like Roger Federer’s announcement that he needed a third knee surgery in a year and would be gone for a long time : read retirement? I just sat still and looked around while I sorted out my thoughts.

Michael’s tree

I took a photo of the kousa dogwood tree which I planted for Michael in 2019. Despite the dry conditions this summer, my constant watering and encouraging words have seemed to stimulate growth. Now it’s taller than me by about a foot and I’m hoping it’s got healthy roots. No blooms yet, but maybe next year. I want to be here to see that happen. As I observed it, I was thinking about poor Haiti. What must life be like for those people who live in abject poverty, not yet recovered from the earthquake of ten years ago, suffering from Covid with limited resources? With political unrest so profound that their president was assassinated with such ease. And facing a new tropical storm in days? While I stare at my little tree, I hear Michael’s voice saying, “the worst part of being married to you is that as long as you know there’s someone with a problem somewhere, you’ll be upset. And yet, that’s only globally – on the personal level, you’re hard as steel, tough as nails.” Yes, that’s true. The natural disasters clobber me. The interpersonal self-inflicted dramas leave me cold. If you do it to yourself, I’m not sympathetic. My life story.

I had a few quick moments with a hummingbird fluttering right over my head. Its wing speed is incredible and clearly exhausting. When it landed on the overhead wire to take a breath, I was transported into thoughts of what was happening in Afghanistan, one of the wars I’d opposed from its inception. I’m not a war advocate. Our world is under dire threat from natural disasters and infectious disease. Human life, as well as all other life forms, is held cheaply while billions of dollars are poured into artificial methods of destroying each other. The freneticism of the hummingbird’s flight reminded me of the mad scramble I saw on television this morning at the Kabul airport, where desperate Afghanis tried to hurl themselves into planes intended for diplomats and their families. Although I know that history has documentation of empires that successfully occupied what is now Afghanistan, there is the phrase “graveyard of empires” that’s been used as a descriptor for those countries which have engaged in combat in that rocky place, countries like my own. Two decades and all the effort to create a strong enough state to resist the fringe elements melted away in no time. Maybe they’re the primary elements of that society although that can’t be true for the women there.

Saigon 1975 – Photo by AP
Saigon 1975 – Photo by AP

Seeing the frenzy to escape brought back memories of the Saigon madness in Vietnam, when native collaborators with the U.S. were desperately breaching the embassy walls while helicopters ferried away the lucky foreign nationals. Our government says this wasn’t the same thing but the visuals don’t lie. What is left behind in Afghanistan, aside from those desperate translators and helpers who may not survive? The most lethal armaments and equipment which will strengthen the very people who were supposed to be militarily inadequate, compared to the fully equipped army and government we armed and trained to resist them. These tattered forces are now fully empowered by our billions of dollars in weaponry as the national army melted away. And now, our country’s politics will ramp up with new accusations and blame-tossing when in truth, this debacle spanned multiple administrations, not just the current one. History on my mind. I thought back to all the Civil War reading I’ve done and recalled the first battle of Bull Run in 1861, what the Confederacy referred to as Manassas, when Washingtonians drove to the battlefield in their carriages to share a picnic lunch while they innocently watched what they thought would be an entertaining skirmish. When southern resistance led by Stonewall Jackson proved to be more than what was bargained for, the northern army and their audience hightailed it back to Washington. The term “The Great Skedaddle” was born. That’s how Afghanistan looked to me today. A skedaddle. Where was the intelligence that should have informed the deciders of withdrawal how swiftly resistance would collapse? Sad and dreadful.

Today, as I sit still in my yard, that ’90‘s film, “Reality Bites” comes to mind. Not so much the subject material but the apt title. I’m not very partial to what’s going on right now. I suppose it’s fair to say that there’ve been plenty of other periods in time that haven’t felt fabulous. Absent from those however, was a pandemic and its subsequent sense of confinement and claustrophobia. Rare moments. The other day I did the math and realized that almost one-third of the time since Michael died has been Covid time. No wonder I’m feeling somewhat raw. I recognize that there are millions of people everywhere who’ve had to face sudden losses due to the virus. I’m not alone in navigating grief. But it’s not easy. I think the duality I’ve always had, one part grounded and practical, the other, open to more abstract and mysterious possibilities has kept me going.

I found the representation for my approach to the world in the early ‘70’s, when I read One Hundred Years of Solitude for the first time. I didn’t really know I was looking for a way to describe how I saw things. I’d taken a pretty direct path to where I was at that time. I knew what I wanted. A different political environment that I was willing to work for, a society that was based on justice, fairness and equality. I also wanted a life partner. None of the messing around free love stuff for me. I wanted a best friend, best teammate and best lover all rolled into one person. I had three offers of marriage. Actually two. Ironically, Michael didn’t really want to get married. He believed that all institutions were fundamentally flawed. But after a few years, he came around and stayed around until he died. I’ve spent a lot of time trying to figure out and describe just what happened between the two of us. We both did. We couldn’t find a practical description for what existed between us. So we accepted the fact that although our rational parts weren’t particularly useful for explanations, the magic was just fine. Like this great line from what remains my favorite book by Marquez: “And both of them remained floating in an empty universe where the only everyday and eternal reality was love.”

Years later, I bought into the concept of Tita, the heroine of Like Water for Chocolate, forced to watch her older sister marry her true love while she tended to their mother, who could pour all her inflamed emotions into food preparation. Everyone who ate her creations experienced all Tita’s feelings which infused each dish, sadness, joy, and lust, who were then driven wild by the power of her passions. I loved this idea. I willfully attempted to pour my robust health into pots of soup, batches of my famous pate, bowls of sweet steaming mashed potatoes and my spicy Italian beef. Tita’s emotions were accidentally shared while mine were deliberate efforts to cure the ills of my loved ones. Some magic is needed to live this life. At least for me. Tita and her love Pedro pined for each other many years, both ultimately outliving her sister and her mother. When they finally were able to join themselves together, their long-deferred adoration causes Pedro to combust on the spot. Tita eats extinguished candles to engulf herself in flames which eventually leads her back to her love in some mystical forever, as the land and buildings around them blaze. “Each of us is born with a box of matches inside us but we can’t strike them all by ourselves.” Ah, the magic of big love. I read more books by Marquez, Jorge Amado and Isabel Allende and Jorge Luis Borges. Part of my being embraces these others whose frame of reference is so different from mine. The world is smaller than we imagine.

I sit still in my yard, looking at the butterflies and the clouds as I often do, but motionless today rather than watching the outside while I work. I am coping with the realities unfolding in front of me, in front of the world. I know I have to move ahead in life despite all the ugly horrors across the globe. Maybe I’ll be able to make some small contribution to fixing a corner of a problem. I’d like to do that. But simultaneously, I draw on the impossible, supernatural enchantment that lies tucked deep inside me, where the essence of the strength named Michael and me still thrives. Maybe I got born into the wrong culture. I can straddle the magic and the realism. What comforts are no longer available to me in the corporeal universe somehow remain alive and accessible to me internally. I have no more explanation for how any of this is possible now than I did 49 years ago when I first collided with Michael. I just have room for this otherworldly core which is coupled with these feet of mine, firmly planted on the ground, eyes fixed on the realities before me. Somehow I find the comfort zone which allows me to survive in this time. I’m here and elsewhere. Trying to be ready for whatever comes next.

Thirteen Hours

I broke through my mental paralysis yesterday. Despite the fact that my lifestyle resembles that of a vampire, prowling around in the dead of night, I dragged myself awake at a normal person hour and headed for the train station for a trip to Chicago. Months ago I’d purchased tickets for the Van Gogh Immersive Experience.

Out of habit, I bought two tickets. Despite over four years on my own, my muscle memory still opts for “partnered.” I find it odd, as I’ve already taken several lengthy trips by myself. I suppose the pandemic has had an impact on my actions. After spending such a long time home alone, except for the internal company that my deep intimacy well of “us” provides, my habit of sharing with Michael is still a thing. Van Gogh was his favorite artist. So…I figured that I’d go with one of my kids. I wasn’t specific about the date as it was a long time in the future. Kid number one had meanwhile planned a family vacation with her crew and which conflicted with the exhibit. Kid number two has been traipsing around the world for months and won’t be back until September. With the Delta variant gobbling up victims and too much uncertainty, I thought I might punt on the tickets and just stay home. But that’s a place I don’t want to go yet, when staying home because it’s easier becomes a regular go-to option. Turns out that my cousin, who lives in Chicago, recently lost her friend of forty years to a sudden aortic aneurysm, a shock as she’d been warring with brain cancer for three years. She is my “little cousin,” fourteen years younger than me. We couldn’t figure out how many years it’s been since we’ve seen each other. Was it 2018? 2019? Whichever, it’s been a long time. Our families were always close even though I went away to college when she was only three years old. Somehow or other, over time, I became a kind of big sister. I offered her the extra ticket as a small comfort for her grief. As a friend of mine reminded me, grief and I are old friends. I know that small positive moments help break up the sadness waltz that becomes part of daily life.

I can’t count how many times I’ve taken this train route up and back to Chicago. As a young college student without a car it was the simplest way to travel home for holidays and weekends. Back in the old days, overbooking was common with people sitting on suitcases in the aisles. I distinctly remember ticket prices of $4.57. Prices are higher now, safety regulations preclude overcrowding, but what remains the same is that the train is always late which it was yesterday. However, given the blistering, oppressive heat, I didn’t mind sitting in the air conditioning which made wearing a mask the whole trip more tolerable.

I’d hoped to get to the city early enough to grab a quick lunch at my favorite pizza place downtown. Actually I’m not quite sure that the traditional deep dish is truly the best Chicago has to offer, but the place is laden with memories of multiple lunches and dinners with Michael and eventually, our kids and their significant others. I was sorry to miss it but you can’t have everything. I grabbed a quick snack at the train station which I’ve always loved. A critical scene from the film The Untouchables was shot there and I always make sure to go through the Great Hall to see the spot where Kevin Costner and Andy Garcia catch up with the accountant whose captures dooms Al Capone to prison.

I briefly considered catching a bus or an El train to get me to the exhibit’s location but the hot wind made me realize I’d be a soaking mess before I arrived at my destination. Besides, with all the Covid worries, I was more comfortable in a Lyft with a masked driver. I was picked up by a nice man named Carlos. In our brief time together, he told me he was from Guatemala and had lived in the U.S. for eleven years. He’d married his high school sweetheart and they had five sons, all under the age of fifteen, down to age one and a half. They’d kept trying to have a daughter but have given up. Five kids is an expensive life journey. Sometimes I forget that I can usually engage well with people and that they often share a lot about their lives with me. There’s no doubt that the past ten years or so have hardened me. I’m less patient, less tolerant at this place in my life and have wondered if all my empathy and capacity to be a receiver, an empathetic person, have shriveled up. I guess they haven’t altogether although I’m an edgier version of the self who once heard life stories from virtually anyone who crossed my path. I still have vestiges of that left in me.

I arrived at my destination ahead of my cousin and found a shady place to wait for her. I took a selfie to remind myself that the Windy City was still that, as my hair had been blown around and flattened by the wind coupled with the humidity and heat-laden air. Then I took a few photos of my surroundings, the tall buildings that often make me feel claustrophobic when I’m in the city. I’m used to living with a lot of open sky broken only by treetops swaying on breezy days.

My cousin showed up and we had a little time to chat and catch up before entering the building. I had no idea what to expect from this experience. My first thought was that I was glad I’d had my knees replaced as there were lots of stairs to negotiate. Tickets were time stamped both to control overcrowding and to ensure that the full effects of what was being projected onto the museum-height walls could be wholly appreciated. A selection of Van Gogh’s paintings were displayed, each one accompanied by a musical selection. Gradually each painting dissolved and morphed into another, filling all the available wall space so you were completely immersed in the piece, while strategically placed mirrors enhanced the depth of the immersion. I know many of these paintings but they weren’t all his most famous pieces. For a long time now, since after Michael’s death, through the endless oppression of the Trump era, I’ve posted a painting on my Facebook page to add a little beauty to the bleak times. Some are artists like Vincent, who are well-known, while others I’ve discovered through a lot of exploration. While combing through different eras and styles I’ve learned more and more about my old favorites. I’ve deeply enjoyed this personal education and barely realized how much more I know than I would’ve thought. As the music played and the walls undulated, I could anticipate what painting was coming next. I found myself moved in a remarkably elemental way, deep in the core of myself, with inexplicable emotions elicited by the art, what I know about Van Gogh’s life, my sharing of appreciation for this work in my years with Michael. I didn’t expect the profundity of it all. I think the most intense moments were when I immediately recognized Samuel Barber’s Adagio for Strings which accompanied the second to the last painting. That music was part of the soundtrack to the film “Platoon,” where it was played during gruesome scenes of violence and death. I had to work hard to disassociate myself from those memories which have been with me since I saw that movie.

The exhibit was slightly under forty minutes but it truly transported you into an alternate timeless space. After it ended, we wandered out to a gift shop where we each received a complimentary poster. I bought a few magnets for my refrigerator before we moved on to grab an early dinner before my train departed.

My cousin is a vegan, more power to her, but I am not. Since I couldn’t get my pizza, I wanted to go to my other favorite restaurant, Greek Islands. Now in a different and larger location, I went there for the first time with Michael and some other friends to celebrate my 23rd birthday back in 1974. I loved the people who worked there, the food and the Roditis table wine which was so easy to drink that my lightweight self was already barely mobile when the waiters set us up with free shots of Ouzo, the licorice-flavored aperitif which I held my nose to toss back. I stumbled into the parking lot as Michael maneuvered me to the car and decades-long devotion to that place was born. I know the city is filled with all sorts of interesting and wonderful eateries but my sentimental attachments outweigh my experimental side. I can experiment in other places. Vegan choices were available so off we went to indulge me. My cousin was leery about eating indoors but it wasn’t really dinnertime, we’re both vaccinated and sometimes your risk just feels worth it.

I ate saganaki, delicious flamed cheese with lemon, greek seasoned potatoes and braised lamb, which I ingested with terrible twinges of guilt. I had one small glass of Roditis and creamy rice pudding for dessert.

Meanwhile, my cousin and I tried to fill each other in on years of news that we haven’t been able to do for a long time. When we walked out of the restaurant, I felt satisfied and glad about deciding to do this quick trip. I looked up and saw this incredible sky with the ray of light that always makes me feel Michael’s presence. Lovely.

Then the time came for her to return to her husband and son while I was dropped off at the train station. I’d managed to sweat my way through three masks but protocols called for masking in the station and on the train. A good thing despite the heat. There’s a long hike from the station through the tunnel to get to the part of the train that stops at your destination. By the time I climbed aboard and hiked up the stairs to the coach section, I was pretty tired. I settled into my seat just in time to watch the beginnings of a major thunderstorm with lightning bolts striking the rods on the tops of the skyscrapers. I just hoped that the weather wouldn’t cause any major delays in getting home.

All told, I was only away for thirteen hours. I guess that little slice of time can be enough. I went through lots of unexpected emotions which are frequently the best kind. Getting caught off guard, being jolted out of daily thought patterns is a good thing. Clears out the cobwebs. Barring disaster, I’m going to use all my PPE and take my train trip to Yellowstone next month. I’m imagining that if thirteen hours are good for me, a week will be even better.

Indecision Blues and Code Red

Roger Federer – what’s he got to do with anything?

Today is Roger Federer’s 40th birthday. He’s just a few weeks older than my daughter. Forty is still quite young. I blazed past that milestone without missing a beat. Of course I’m not a world class athlete. Federer’s career, which spans two decades, has been an essentially injury-free experience. He’s had some back issues but mostly, he’d been healthy up until a few years ago when a knee injury knocked him out of competition. He rehabbed for 6 months and came blazing back to win both the Australian Open and Wimbledon that year. But, along with the pandemic came two more knee surgeries, lots of rehab and few matches. He returned to the court in 2021 with mixed results. Now he’s withdrawn from more tournaments. I’m wondering whether he’s going to call it a career.

The full-size cutout my kid bought me.

Why does Roger matter? Well, I’ll tell you. He’s been playing for twenty years now. During that time I watched him knock off lots of talented players who I enjoyed watching before he showed up. I’ve always loved to watch tennis. I’m fascinated by those individuals who depend only on themselves to achieve success in this challenging game. I tend to choose benign addictions like sports, books and movies, rather than alcohol and drugs. Anyway, as Federer evolved, I was fascinated by his balletic grace. He’s beautiful to watch. And as he grew up, I admired his being self-contained, rarely having temper tantrums, never making excuses for losing. He was nice. Modest while still being extremely competitive. As his career advanced, his philanthropic work increased. He cries unapologetically. He loves his wife and kids. What’s not to like? I have a big streak of loyal in me. So Roger’s been my escape, my entertainment, my happy place. Watching him play has brought me relief in my darkest times, like when Michael was so dreadfully sick and I’d be up in the night, eyes glued to tournaments on the other side of the world, exhausted but soothed by this stranger who is like a friend. After Michael died, I sat around trying to figure out what I still wanted to do with my life. Seeing Roger in the flesh was high on my list. In 2018, I saw him twice, wriggling through the crowd to be close enough to see him sweat. I’m so glad I did.

In these continually challenging times, I, an inveterate planner, was keenly aware that Roger wasn’t going to be around forever, and so selected his successor, a young Greek player who exhibits some characteristics that remind me of the tennis types I’ve always liked, like Borg, Sampras and Roger, thr civilized players as opposed to the short-fused who are not my style. Still, I’m really sad to lose my favorite. I’ve already lost my life favorite and that fact is my sidekick every single day.

No thanks.

The ad above keeps popping up on my Facebook feed. I don’t need this service to sum up the past ten years in photos. The Before, which ended for me in spring, 2012, when Michael was diagnosed with his orphan cancer, is the time period I prefer to the nine years in The After, which were packed with illnesses, cancer treatments and death, with the sprinklings of happiness that help us survive hard times. Hard times indeed. I willingly admit that my outsized reaction to not being able to watch Federer, correlates directly with the incessant news cycle drumbeats of all that lays beyond my control. More dangerous Covid variants, waning immunization efficacy over time, stubborn anti-vaxxers whose need to feel free, outweighs any sense of personal responsibility to their communities. I realized yesterday that I’ve spent one-third of the time since Michael’s death dealing with the cycles of the pandemic. No wonder I feel blue. As if grief isn’t hard enough. And how about the fires raging across the planet, the muddy floods surging through cities, the early unexpected storms and yet, the terrible drought? What was today, in a headline from the United Nation’s report on climate change, referred to as “code red for humanity?” And lest we forget, in the U.S., what about everything else that is unresolved? I can begin with the dystopian attempts to toss out the legitimate election results from 2020. Absent that madness, we now have the efforts of the minority party to ensure that never again will the massive number of minority voters who voted in 2020, have the chance to cast those many ballots again. Then there are those Republicans who choose to look at the January 6th insurrection as a patriotic love fest. I mean, really? We have documentary evidence. Does that matter? Those machinations are intended to push this country back to the nineteenth century with an authoritarian twist. I’m trying to keep my inner Nietzschean tendencies but I think I’m failing. I’m getting stuck in “what’s the point?”

Months ago, when I got vaccinated, I figured I might grab a chance at another vacation, a visit to an iconic national park I’d never seen, Yellowstone. Before Covid, I’d planned to try to reach for as many unrealized dreams Michael and I thought we’d work our way through during retirement. I’d do it with him tucked away in my back pocket, spurring me on to squander no time as long as I have it. Just a few months ago, I carefully planned a straightforward, albeit taxing trip to knock this treasured park off my list. Unlike the Alaska trip I canceled last year, this is a compressed-do-it-all-see-it-all schedule that for the most part seemed a shorter reasonable stretch during these uncertain days. But alas, part of those full days includes being aboard completely booked shuttles with bunches of people I don’t know. When I thought my vaccinations made me good to go, that wasn’t a huge issue. That’s not considered accurate any more. We now have breakthrough infections, not by the thousands, at least so far, but breakthroughs nonetheless. Going out west where vaccinations aren’t as common as they are at home is a concern. We all face risks of illness and always have as participating members of society. But this nasty Delta variant is a whole other ball game. Every day, more bits of information trickle out which cause me to feel as indecisive as I’ve ever felt in my life. My choices feel out of my hands and more in the control of people who are diametrically opposed to my point of view on virtually everything from vaccines, to climate change to voting rights. Is it really so important for me to go to Yellowstone if I wind up rubbing shoulders and perhaps exchanging droplets with the twain I have no desire to meet? I’m all out of patience with these people. I’m too old to coax anyone to my viewpoint. The world’s burning and I’m watching a guy in his hospital bed, just having survived a tough bout with Covid, tell a reporter that he’d rather get sick all over again rather than get vaccinated. Maybe if he contracts it again, he won’t have the chance to be so stupid. But does he have to drag other people down with him? I just can’t go there.

Like a boat out of hell: Evacuated Greek locals watch in horror from safety of rescue ship as wildfires tear through their paradise island home of Evia

By Stavros Dev

The existential crisis of our time is and has been climate change for decades. After watching Belgian and German towns with their streets awash in rushing, speeding mud, carrying away everything in front of it, the blazes decimating Turkey and Greece surge into the headlines. Greece was once going to be the big trip for Michael and me. Now I fear the potential devastation of the ancient treasures at risk of flames. I sit around wondering uselessly, fruitlessly, whether Al Gore, whose election was stolen, would have made the difference in slamming the brakes on what is now upon us. He was far from perfect but I can imagine a different world had he been elected. I know there’s no going back. I know I won’t be here if our “code red” warning is shunted off to the side as it has been in the past. But I worry for my children and grandchildren.

Maybe if I mask with my favorite octopus over another paper one, some of this wily animal’s intelligence and guile will seep into my flattened decisive abilities and rejuvenate me. I need to stop dithering and do what I can do without regrets, one way or another. I’m hoping to find a little more in my reservoir of mostly depleted energy, to deal with the uncertainty of this virus and find a way to impact the political issues. Time to get back in the streets. Socially distanced, of course. Demonstrations help.


My camera circa 1984

I started taking a lot of snapshots when I got a cell phone. I’ve had a number of cameras in my life. Little point and shoots, disposable ones, the kind which required a flash attachment on the top, a more sophisticated model with f-stops and a tripod – on and on. I was too lazy to fool around with all the complicated ones so the phone camera is perfect for me. I love candid, unposed photos and being able to take a snapshot of anything whenever the impulse strikes me. In recent years, I’ve thought a lot about those frozen moments in time, the ones which help create a rich textured look at a life, at the world, so important to a person like me to whom history is so meaningful. When Michael died, one of the hardest things for me to bear was that he would be forever absent from our family pictures. For most of our lives he hated having someone take his picture. Sometimes he was cooperative. Other times not so much. I think he got in trouble in fourth grade for crossing his eyes in his school’s class picture, wrecking it according to his teacher. He definitely intermittently exerted a negative influence over the rest of us in our organization.

Maybe he had something deeper in mind, at least at some subconscious level, regarding his reluctance to be photographed. He was a truly private person who closely guarded his personal thoughts and feelings. Perhaps the instinctive mistrust the indigenous peoples of this country had when photographers showed up with their complicated cameras played a part in his attitude. They felt that a permanent image would steal their souls, encasing them forever in these peculiar reflections. When Edward Curtis traveled west, forgoing his successful career as a portrait photographer of the wealthy and famous, to document the shrinking culture of Native Americans, he was ultimately allowed to make thousands of images and to develop an audio record of rituals and ceremonies before they faded into history. The tribes named him Shadow Catcher. An excellent chronicle of his life is available as he sacrificed family and security to complete his project. I highly recommend it.

Edward Curtis – Self-portrait

I can understand Michael’s feelings in addition to those long-ago suspicions of those who feared a theft of their most intimate selves. But my desire for a historical continuum outweighs that uncomfortable context. Yes, a part of the self is permanently captured in photos. I just don’t think that’s negative, even when I hate certain photos of myself when I’ve been caught in an unappealing pose, or simply when I looked awful. I still want those moments as part of my life’s tapestry. Although I don’t have as many pictures of us from our earliest years as I would like, I do have enough for a thorough record of most of our lives. A slippery sort, I often took snapshots of Michael when he wasn’t paying attention to what I was doing. I have the pleasure of seeing him from infancy to death with everything in between. He would’ve been appalled as he was by my saving our intimate photos. He told me to get rid of them so our kids wouldn’t happen upon them. I never did destroy the evidence of that documentary foray into our private life when we got our hands on a Polaroid camera and could develop photos in the solitude of our bedroom. The kids never saw them. I’m so not sorry. Yet still, they’re not enough when I miss him desperately.

Me reading at an early age.

So about these snapshots. I have no memory of being that baby sitting on a lawn, carefully turning the pages of my book. I expect that one of my parents took that photo. Perhaps it was the aunt or uncle who lived in the same town as us when we moved to Iowa for about six years. Maybe my grandparents were visiting and they took the picture. Who knows? In my lifetime, I’ve already passed more than 613,200 hours. Stop and think about that incredibly large number. For many of them I was asleep. Or I was alone. Certainly for a great portion of that time, no cameras were present to catch a moment, to record an image which would wind up as a conversation piece within the family, taking a tangible place in our otherwise fleeting history. There’s such joy in looking at all those photos and saying, “remember when we…” They provide a sense of continuity, closeness and well-being.

Me – Age 5

My mental gymnastics have taken me down roads like this before. The random images my memory holds are only a fraction of what’s actually socked away in the parts of my brain I can’t consciously access. Why do I remember the wintry day when I was out looking at property for my job and saw an old man and his dog, each in a lawn chair, leaning against their garage, surrounded by snow drifts? And what about the eye contact I made with the baby being pushed in her stroller? We locked eyes for about thirty seconds and I immediately thought I’d be buried in her memory forever, unnoticed, although I continue to remember that mini mine-meld. From that train of thought, I proceeded to all the photos of me, taken over eight decades by people known and unknown, who own pieces of my history that I’ll likely never see. Pictures of Michael too. The idea that I might see something new from an unexpected source drives me crazy with desire. Someone, many someones, have perhaps not pieces of my soul, but views of me that I don’t have, which can shine a light into a corner of my life that’s long gone and forgotten.

Surprise photo from RW
A surprise from my friend BW

Within the past couple of years, a few friends, going through their own stacks of memories, unearthed a few pictures of me, one from the ‘80’s when I was a new mom and one from 1969 on the day that my most significant relationship except for Michael was just beginning. I loved receiving these little nuggets from the past. I have no idea what event I was at in the top photo, some long-forgotten social thing that wasn’t impactful in my life. But to have received the photo of that warm fall day in 1969, sitting on the south portico of the student union, was a moment I remember very well, the beginning of a love that would change me forever, in a time which would bring me great joy, insecurity and utter despair. The capture of that moment was a real gift. A part of me wants to use all my social resources to ask my friends from the long ago past to send me more of these photos which are ultimately less meaningful to them than to me and my family. Or if not less meaningful, to at least share the unseen moments with me. Perhaps that’s a selfish request but I’m thinking about it. So far, I’ve restrained myself. Family and friends have more important things to do besides feeding my snapshot obsession.

Me and Tom – 1973

Recently I was poking around on Facebook, checking in on some groups I follow. One of them is called Pictures of Chicago which I especially enjoy. because despite the fact that I’ve lived elsewhere for over fifty years, I still consider the Windy City my hometown. Most of the photos are just fine, but on this particular day, one picture really drew me in, so much that I looked at the name of the person responsible for such beauty. I recognized his name and after looking past the changes many years have wrought, I saw the eyes of the friend from the photo above – Tom. I wrote him a private message, inquiring as to whether he was indeed the person with whom Michael and I shared time back in the early ‘70’s. He responded quickly and positively and we began to trade stories of our lives through so many decades. He actually sent me that photo, not knowing that I already had it. In return, I sent him one of he and Michael which he hadn’t seen.

Tom and Michael – 1973

Tom was taking pictures back in those days and apparently kept an archive about which I knew nothing. After both of us descended into our memories about those long ago times, he was motivated enough to dig into his stash, compiling a trove of still photos of political demonstrations taking place in our community some time in 1973. I received his zip drive, opened it and found myself staring at pictures of me and my friends, along with other like-minded people, organizing for a march through the streets of our community. I was stunned. I’d been an active participant in protests for several years, both in my college town as well as Washington, D.C., but I’d never actually seen myself from the outside looking in. I found Michael in the midst of one photo which was no surprise considering he was 6’4” and tended to be boisterous. The bulk of those photos will be part of a different story but here are a few from the group.

Me reading my “manifesto” – Photo by Tom P.
Michael, the tall gesticulating guy – Photo by Tom P.

What else is out there? A random moment brought back these remarkable images of a critical period of my life. I was in the midst of solidifying a worldview which is still the bedrock of my most essential self. My politics and myself are one entity. I look at life through the prism of my political views. For me, the ‘60’s and 70’s weren’t just about blowing off cultural steam before a return to the mainstream. I’m still out here as I was then, not part of anything approaching “the middle.” I guess you can call that consistency. In addition, Michael and I were just a few years into our friendship and then what became so much more. Part of that early time together revolved around our alternative ideas and actions. How precious to document a few moments from that more public part of us. Where else are we, tucked away in a box, a photo album, a file cabinet? I crave more snapshots, more tangible bits from our lives. My grandchildren are growing up with much of their existence fully documented because of developments in technology and its simple accessibility. I know I have more than many people from my generation because Michael and I shared the value of history. To have more unknown treasures surface? What a gift that would be.