The 33rd Month

Sometimes writing means wrangling with yourself. There’s what you feel. And then there’s what you think about what you feel. At least that’s how it works for me. I spend time doing critical evaluation of what’s going on inside me. I want to make sure I don’t lose sight of my place in the universe. For the most part, I remind myself that I have first world problems. Compared to millions of people on this planet, my life is easy and filled with countless riches. I hope I always stay aware of this fundamental truth. That said, I still, like most humans, concentrate on the minutiae of my daily life, both the bad and the good. And then there’s the bigger, deeper part of me that is more complex and existential. First, the annoying parts…

The beginning of 2020 was not what I’d call an auspicious start to a new decade. In dreary January, five months after signing a contract to have my house sided, workers showed up, unannounced, and barreled into my yard with piles of equipment and materials. They surrounded my lot with yellow crime tape and signs warning of hazardous waste. Despite the fearful cautions, they regularly smoked cigarettes right next to their signs, adding a quality of dissonance to their sudden arrival.

For the homeowner, dealing with contractors usually means acquiring an unwanted anecdote catalog of disagreements about lateness, sloppiness, misunderstood expectations and frustration. My experience covered all those conflicts. They barged into my life with a proprietary attitude, tramping around, making messes, destroying my yard and banging away at my sensibilities for eight hours a day. An air compressor below my bedroom window rumbled every fifteen minutes while a boom box blaring music played constantly, even when they were away on lunch break. They kept the gate to my backyard open, making it impossible for me to let my dog out. I realized that until they were finished, my life during the day was not my own. That situation became especially challenging when I developed the flu. Chills, aches and fever chained me to the house with the incessant bang-bang-banging of hammers the theme song for my misery. I never expected the siding people to show up during the winter – mustering up the energy to direct them, answer questions and argue felt like a lot. I wondered why I’d even bothered to get involved with a big project like siding my monstrous old house at this stage of my life. The money I was spending could buy some amazing experiences which mean a lot more to me than stuff does. I’m trying to remember that come spring, when I’m working in the garden, I’ll be glad I’m not seeing all the broken shingles and stains which pushed me to do this work. My house is what I’ll leave for my kids and once I get past this event, I’ll be glad it’s done.

So the flu and the construction left me muddled which in turn made me more uncomfortable. I’m used to managing myself well. But events have been wearing on me. Instead of feeling decisive, I’ve been indefinite, clouded. Politics have been frustrating. I’m disgruntled about winding up with two old white men in the Democratic run for the presidency. I’ll vote for whoever gets the nomination but I’m thinking that I won’t live long enough to see a woman president. As I mull over my life journey, that is a huge disappointment. Next, my go-to distraction, watching Roger Federer play tennis, was stripped away due to an injury which required him to have knee surgery. I’ve been aware for a long time that he’s approaching the end of his career. But I wasn’t prepared for an abrupt change. I’ll admit, depending on an athlete for pleasure and sustenance is pretty impractical. I hope he has a little more time left to come back and play. But clearly I need to adjust and find some new resources.

Then there is this new coronavirus. Suddenly I find myself in the age group which is most vulnerable to this vague illness. I suppose that after how terrible I felt with my flu experience, my apprehension about a new threat is elevated. Is this alien sense of being less capable and more threatened an age thing? Or is it something else? I was supposed to take a trip to Florida to spend some time with old friends. As I was tying up the last parts of the siding job, I was carefully watching the weather forecast. I was supposed to be taking a bus to the airport in Chicago. A storm popped up which was scheduled to hit smack in the middle of my ride to the city, bringing snow and blustery conditions which made flight cancellations likely. I wavered between leaving on my planned date and delaying for a bit. After days of uncertainty, I finally chose to delay. Again, the indecisiveness was rattling for me.

I finally pushed my anxiety aside, grabbed a packet of anti-bacterial wipes and hand sanitizer and boarded a bus which would get me to Midway airport and my flight south. A bus ride provides a good thinking place, especially in the Midwest where there’s lots of space to absorb your thoughts and feelings.

I puzzled over how different I felt from my usual self. I was pretty convinced that getting thrown off my usual pace by the flu had forced me into a deeply reflective mindset, the kind that generally are precipitated by life-altering events. I’d certainly had my share of those. Up to this point I’d rolled straight through all of them, including Michael’s death. I still remember that within thirty minutes of my writing his oncologist to tell her he’d died, she called me to say I was now at the highest risk of death I’d ever been in my life. She said that the kind of caregiving I’d done had worn me down, that for the next six months I should do nothing but sleep, eat and exercise. That was thirty three months ago. Obviously I didn’t die. Until I got sick in February I’d just been moving forward, living the best version of my days. Stopping cold threw me into this funk.

But the truth is, the funk has been a companion I’ve been able to set aside for the most part. The funk is about the absence of my life’s partner. I’m so over the novelty of his being gone. Yeah, I can do it all. I’ve always been able to do things. I didn’t live in one of those marriages where the male dominated in any way. In fact, our big joke was Michael saying things like, “how about if I’m the guy tonight,” when we went out to dinner. When we went places, including our longest road trips, I drove 90% of the time. Yeah, I can do stuff. My contractor told me I was a force to be reckoned with. But for me, it’s mostly just being alone for everything. Being sick alone. Arguing with contractors alone. Making all the decisions about everything alone. And it isn’t just “alone.” I have great kids who care about me. They offer help. But they’re not my partner. I won’t have another partner. I have no interest in a new companion. My relationship with Michael was a one time deal. We started out with each other as young kids. We were fortunate enough to stay together until what I thought was the beginning of old age. The dissonance of feeling so much older right now, as I head toward the completion of seven decades on earth, with the part of me that feels too young to be a widow, is not lost on me. Everything doesn’t have to be logical.

So I’m flying to one of our favorite places where we spent many magical times, the Gulf Coast of Florida. And I’m recognizing that underlying my new muddled state and my anxiety is the simple fact that I’m in my thirty-third month of grief and mourning. I didn’t know that I would feel this way. During the harried years of trying to help Michael stay alive, I thought about what my future would be like when he was gone. But you can’t really anticipate what will be absent no matter how honest you are about your emotions. When Michael asked me what I was going to do when he died, I would say, “I have no clue.” I meant that. I didn’t know I would still be in love with a dead person. Nor did I understand the fatigue of being the place where the buck always stops. But there it is. The fact of the matter, or at least my matter.

I arrived at the Gulf tired but relieved. I’m relieved that I have a better understanding of my bumpy start to 2020. I’m far from the only one with issues. All around me are people coping with multiple problems like cancer, troubled kids, joblessness and finances. Now there appears to be a global pandemic. What will the outcomes be for so many who are simply going about their daily lives? In my country, a convulsive political campaign will proceed until the election finally arrives in November. The consequences of that alone have huge implications for the world. I shudder at the possibility of this seemingly endless presidency which has cast a dystopic shadow over my life, from the beginning of Michael’s decline to his death and beyond.

I’ve been fortunate enough to walk on the beach, steady now instead of wobbly, my two new knees making life so much easier for me than it was for many painful years. Michael inhabits me in ways that are hard to describe, ghostly yet often palpable. I still write him letters although no longer every day. There are countless times that I want to send him texts or call him on the phone. And there are others when all that seems unnecessary because for me, he still just is. On this trip where I stay with friends who knew us both when we were so very young, he is a frequent topic of conversation which is incredibly relieving for me. Here, no one thinks I’m weird, or at least weird because he is still such a central person for me. I do what we’d do together. I collect my shells and marvel at the beauty of the water and the wildlife. My photo of my foot in the Gulf looks lonely because we used to put our feet side by side in those pictures.

I know that my life will never feel as rich and deep as it did when Michael was next to me. But I also know that I’m able to have pleasure, to intermittently escape the endless sense of responsibility for decision-making that feels like such a load when there is no one to share it. In my mind, I lay my head on his shoulder and talk about anything that crosses my mind. In my thirty- third month, I still feel frustration and anger that I was robbed of best friend, my solace, my comfort. I don’t know if anything will get easier as time goes by. Who knows? In the meantime, I’m going to try to be patient with my evolving older self. I’m doing my best. I need to figure out that my best is enough.

Cancer Drops the Hammer – Part 1 – Chapter 10 – Be 278

November, 2014

Michael had a cyst on his eyelid which was drained by our eye doctor. He also had a visit with the dermatologist who observed some odd tissue on the crown of his head and performed a biopsy which showed precancerous cells. She asked him to return in December for a second look. Hyper vigilance continues.

We welcomed Thanksgiving with stunned gratitude. After the 2013 holiday, we thought we’d spent our last favorite family holiday together. That previous November, we’d been told that Michael’s Merkel cell cancer had returned, scattered throughout his bones, and that absent treatment, his prognosis was 2-3 months. With treatment, perhaps he’d have a year. And here we were, past that year with the family gathering again in our home. Michael had weathered his chemo well but despite that, we knew that the cancer, which had been undetectable for 4 months, was now visible again in a few spots on his skeleton. Thus far, he remained asymptomatic. We’d managed to take a few special trips and were doing pretty well at living mindfully. But we were also tired and stressed. The anxiety of living from scan to scan had worn both of us down. Life outside Michael’s cancer hadn’t stopped either. My mother, aged 91, was now showing signs of dementia. Her life in assisted living was getting harder to manage as she regularly confused her medications, causing dizzying symptoms. She was also having wild diabetic episodes which required frequent trips to the ER. My sister and I were trying to manage her problems together, but as her power of attorney for health care, I needed to be present much of the time. I resented having to be away from home at all when Michael was struggling with the disappointment of his scan. In the midst of everything, I was reminded of what I’d learned as a much younger woman – during times of crisis it’s likely that people will become more like themselves rather than developing new and better responses to stress. That certainly applied to both Michael and me. When the family dispersed, he went into a dark, irritable space. Facing his mortality every day was wearing on him and withdrawal was one of his go-to life management techniques. Mine was to begin probing and pushing, getting it all out on the table, aggressively trying to dissect every feeling and every thought. Michael had frequently said drily throughout our lives, “would you mind removing your feet from my back?” Yes. I was usually impatiently stamping my feet at the finish line before Michael got out of the blocks. In the best of times we tolerated each other’s differences pretty well. These however, were not the best of times. Being angry and alienated from each other is truly a dreadful feeling when you know that time is so limited by disease. Neither one of us could allow too many days to pass before limping back to each other, trying to find our common ground so we could reunite and face whatever was coming next. There’s no manual for dealing with terminal illness. We just kept going, trying to manage ourselves and our relationship in the best possible way.

December, 2014 was an intense month. Michael went back to the dermatologist who destroyed more tissue on the top of his head with liquid nitrogen. My mother continued to deteriorate both mentally and physically. She was in and out of the hospital every few weeks. I realized that assisted living was about to become a thing of the past. In two years she’d gone from living with me to the partial care facility – now she seemed destined for a nursing home.

Meanwhile Michael had his December scan. Not only had the three spots which were radiated failed to respond but there were two new ones. He was still pain-free but we knew he needed to get some systemic treatment before the cancer became more widespread. I had sent out a dozen inquiries to researchers across the country who all felt like Michael’s best bet was the clinical trial for a PD-1 inhibitor rather than the possibility of using Tarceva and Zometa which might affect one of the mutations in his tumor tissue. A branch of that PD-1 trial was starting in January at Barnes Hospital in St. Louis, only a few hours away from home. We were desperate for him to get approved for that before there was a decline in his overall physical condition. The learning curve about clinical trials was steep. In our naïveté, we thought having a proven incurable disease targeted by the experimental therapy was enough to qualify. Instead there were rigorous standards involving previous treatments, blood count levels and in Michael’s case, what was the most challenging – evidence of measurable disease. We found out that bone metastases were not considered measurable disease; rather there needed to be soft tissue that could sized for potential shrinkage from the treatment. I still can’t understand the narrow parameters of a trial to treat a rare and incurable disease. However, our local radiation oncologist informed us that the scans he used to develop his radiation plan for those first three recurrent cancer spots showed soft tissue involvement along Michael’s rib. He gave us copies of those scans with the rib area highlighted. We managed to get an appointment to see the principal investigator for the St. Louis trial in mid-January.

In late December, we ran off to Starved Rock for a brief two day vacation, keeping up with the tradition we’d practiced for years. I left town with my mom still in the hospital. I was exhausted from trying to deal with the logistics of her life and the bureaucracy of both her health insurance and the assisted living home. I was also exploring our own health insurance for the drugs Michael would need if he didn’t get into the trial. Our trip had a forced element to it although it was better than not going. When we returned, my mom was too ill to be anywhere but a nursing home.

December 26, 2014

Dorothy to the nursing home today. Dismal, depressing and a bitter end. I always said I’d never put my mother in a nursing home but I actually did it. Who can ever really know what they will or won’t do? Life is full of unpredictable and unimaginable changes. Those who can’t adapt belong on the losing side of natural selection. But the strong ones who survive are mutated. I am mutated. Some days I am unrecognizable to myself. Is there any girl left in me? Am I completely brittle from my experiences? Where are the soft unprotected innocent spaces? Can I find some velvety smooth place to nestle in for just a few minutes?

Our family went out for New Year’s Eve dinner as we did every year. We’d started 2014 in terror and were ending it only slightly less fearful. By January 5th, Michael started feeling pain in his hip at the site of one of the lesions which had shown up on his scan. A few days later we were frantically packing up my mom’s apartment as the assisted living facility wanted it available for a new renter. We were hoping that Merkel Cell would, as our Dr. Luyun had stated, remain at least a little indolent for another week or so as Michael’s intake appointment for the immunological PD-1 trial was looming at the cancer center at Barnes in St. Louis. With no systemic cancer treatment since March of 2014, we were certain that the slow insidious return of disease could soon escalate. We tried to stay optimistic, hoping that entry into the trial was imminent and that this new immunological drug, soon to called Avelumab, would have more benign effects than Tarceva or another chemo. Michael already needed a narcotic for the new pain. We were teetering on the edge of a cancer abyss.

On a glittering cold and sunny January morning we drove off to St. Louis. We carried the scans from Dr. Stanic, where he’d clearly marked and measured the soft tissue along the rib which was mandatory for entry into the trial. The Siteman Cancer center was huge, gleaming and bustling with activity.

We were ushered into an intake office where Michael filled out the application and waiver documents required by the trial. The principal investigator’s nurse, Joann, unfortunately reminded us a bit of Nurse Ratched in One Flew Over the Cuckoo’s Nest, although she was actually more brusque. She did a cursory vitals exam and quickly got a blood draw. We mentioned that we were concerned about Michael’s low platelet issues. She said, “oh that’s no big deal – you can just get an infusion before your treatment.” We stared at her, dumbfounded. That didn’t sound much like what the protocols said. Within a few minutes we met the doctor, Gerald Linette who went rapidly over the documents and then surprised us by already having the blood test results. They showed that all Michael’s counts were adequate for the trial. Things evidently moved much faster at this large cancer facility than at our community center at home. We felt relieved and hopeful. Although this very different atmosphere was somewhat antiseptic and cold, all we really cared about was getting into the trial. We handed Linette our scan copies. He quickly informed us that Michael would be scanned on-site and that only their local results would be considered as opposed to those done on off-campus equipment. He ordered the scan and said we’d be informed of his decision as soon as the results were read by a radiologist. Michael was in and out of the test within minutes and suddenly we were on our way back home. We were mid-way through our return trip when Joann called and informed us that the Barnes scan showed only 2 sites of active cancer versus the 5 on our local scan. In addition, there was no sign of soft tissue involvement. I started arguing with her because she was being so dismissive. She cut me off and said abruptly, “Michael needs to go home and get sicker. Have him scanned every two months and call us back when things get worse.” And that was that. We were so disappointed, angry and frightened. With this avenue closed off, all we had left was the Tarceva/Zometa combination or another line of chemo. Either an untested choice or a choice we knew wouldn’t do much. The Tarceva was incredibly expensive and we needed to get insurance approval before we could begin that regimen.

The advent of pain into Michael’s life changed everything. Prior to the end of his remission, the only pain he’d ever suffered from illness was a byproduct of radiation treatment. Almost three years from his initial diagnosis, he was hugely fortunate that Merkel cell had thus far been a mysterious abstraction that he knew was inside him. Now it made its presence known round the clock. His need for pain medication became a complicating issue. The meds caused stomach problems. They didn’t really provide thorough coverage so pain woke him at night causing fatigue and mental fogginess. In addition, there was no way to pretend that he was okay, even for a short time. Although we’d been looking at the possibility of death for more than a year, the physical symptoms made things much harder psychologically. We tried to continue making the most out of every day but we had dark times, both alone and together.

We went about the business of getting Tarceva approved by insurance. Tarceva was an oral medication and the adjuvant Zometa was administered by infusion. By the first week of February, Michael began this experimental treatment, hoping that it would target the primary genetic mutation in his cancer cells and halt disease progression.

After only a few days on this protocol, side effects hit with a vengeance. Michael developed an angry pustular rash on his face, chest and the back of his neck. He developed new pain which now involved both hips. We saw the radiation oncologist who zapped the first three spots of the returned cancer and he suggested that some of the pain might be attributable to arthritis. I was baffled by this suggestion as Michael had been through the pain of herniated disks in his life and never was as uncomfortable as he was in these moments.

He became very quiet, sighing a lot and saying he was trying to find his balance. On occasion he’d go back to teaching as a guest speaker, trying to feel like there was life outside cancer. I worried a lot about his being exposed to a broad community of germs but he needed to go there to stay sane. We’d always had differences about how much validation we got from external sources. So off he went while he could while I fussed away internally.

Within two weeks, the side effects went from bad to so bad that treatment needed to be stopped. His blood showed elevated liver enzymes and his dreadful rash covered his head and entire torso. He developed jaw and esophageal spasms, bloat and acid stomach. He grew so weak he could barely get out of bed. What a rapid and stunning reversal from the relative good health he’d maintained for so long. In addition, his pain was increasingly breaking through his meds. I found myself in the unenviable role of advocate and chief nag. Michael had little appetite and not much thirst. I knew that not eating and drinking would compound all the other issues. So it was up to me to push and prod, all day and all night, counting calories and ounces and driving my beloved husband crazy. Obviously I didn’t want this miserable job. But Michael wanted to stay alive and if he couldn’t manage his basic care, I would. Basically this failed treatment sapped his energy. He was prone day and night which only made him feel worse. Dr. Luyun suggested Michael try what was considered an “old people’s” antidepressant, Remeron. Its primary side effect was increased appetite and weight gain. At that point, anything was worth a try. By mid-February, Michael was like a shadow. Exhausted, in pain and spending lots of time sleeping. We set up appointments for X-rays to see if anything new would show up in his sore hips. Meanwhile, at the crown of his scalp where he’d had the biopsy and the liquid nitrogen treatment, there was a peculiar lump growing. At first, the doctors thought it was a keloid and then perhaps a cyst. It was scaly, about 3/4 inches tall and seemed spongy. Dr. Luyun recommended removal. When Michael saw the dermatologist, she felt it would be better to have the head and neck cancer surgeon remove it because of its size. Our original surgeon had moved away so we went to the young woman he’d suggested. We saw her and she scheduled an outpatient surgery. That morning, I sat in the waiting room waiting for someone to call me back to see Michael in recovery. After awhile, I realized too much time was passing. I went to the receptionist who managed to send a patient liaison to talk with me. She informed me that the surgeon was sending one frozen section after another to a hospital pathologist. I immediately realized that the growth was a Merkel cell that had gotten by all the doctors. My heart literally sank into my gut. How could I tell Michael that what we thought was an innocuous cyst was cancer? Even worse was realizing that this growth, which had been present, albeit smaller, since December, was actually on his head when we’d gone to Barnes to try getting into the trial. He’d had the trial-precluding soft tissue component for months. And indeed, he’d gotten so much sicker that his liver enzymes would disqualify him from the trial at this point. When the young surgeon came to speak to me I could see she was totally shaken. She’d had to cut almost to his skull before she found a clean margin with no cancer cells. She was barely able to seal his incision which had a large yellow bolster pressed down against it that would need cleaning while it stayed in place until skin regenerated.

I felt devastated. I pulled myself together for Michael’s sake but this trajectory, coupled with my mother failing in the nursing home, was a gigantic weight, so much to carry.

February 27th, 2015

How did this happen? In January, his scans were stable. What’s happening now? I feel so defeated. Where do we go from here? How much time is left? When my eyes pop open in the morning, my brain is instant tumult, running possibilities, turning flips, the pace so rapid that I am breathless. I continue to cast around for alternatives. I am so lonely.

Psychedelic

Recently I’ve been writing autobiographical posts in chronological order using the the places I’ve lived as a stepping off point for each moment in time. I’m doing this for my kids and grandchilden, including the ones that have yet to arrive. Passing forward a history that allows them to know who I was before they existed feels important to me. My mother told me stories about her early years throughout my life. Some are so deeply imbedded in my memory that I can see her living each event. I was always trying to get her to write them down, hoping that process would elicit more details and perhaps even more memories. She couldn’t get herself to do that, except for a very short time, and I always wished she had. My family will know a lot more about me than I did about her.

So far I’ve gotten to 1970, the end of my sophomore year in college. I was 19 years old. I was deeply engaged in the convulsive political activities of that time, attending many demonstrations and working hard to get educated about the pressing social issues affecting many young people across the country. I was also working hard on myself, trying to understand who I was before I decided to change my young life, who I was in that moment and who I wanted to be in the future. I was a curious mixture of cautious and brave. Except for my careful approach to romantic relationships, I was intellectually and emotionally bold, open to trying new things. I was particularly interested in the mystique surrounding the use of psychedelic drugs. Were people who used them really reaching a new plane of consciousness? Would “tripping” permanently and fundamentally change a person? I was skeptical about all that cosmic stuff. But I was curious. I decided that I’d give acid, LSD, a try. My personal caveat was that while doing it, I’d write as I went along, trying to keep a record of what happened to me. That made sense as journaling was something I did as a matter of course. On this recent autobiographical journey, I found that piece of acid trip writing which vividly evoked my experience of 50 years ago. I thought it deserved its own space, shining a light back on my young self at a unique moment. So here it is. Oh my…

Your eyes are burning holes in my face and your crunching hands look like sculptured clay. Aquiline features chiseled inside my head blotting away my thoughts that I don’t want to keep but I know theyll come back anyway. A familiar voice I’ve heard for years and who how is she feeling I’m worried.

Wampy! Wampy!

Basket shooters and weavers.

This apartment is a huge throbbing peanut shell with chipped candle all over the table.

I know that he doesn’t want to share experiences with me so I must learn to forget that I want to share things with him.

My head is stiff and filled and I can barely move this pen across the paper. I’m not looking at what I’m doing but my hand is moving and this is the most incredible feeling I’ve ever had. I want to vomit except I know I hate it.

Your hand was so big in front of my eyes. Everything is so much slower and steadier when I look at something for too long my vision clouds and I feel all apart each limb some other than part of me what is me? I’m floating inside my head how am I doing this. I see you moving and watching me I see shadows your cigarette I see S. breathing.

It’s music I’m floating I’m moving all sensation a ghost I’m bouncing. They’re not moving it’s me. I’ve heard this music before. I’m so disciplined I’m writing, I’m writing, I’m writing. I hear everything I feel everything inside me. I hear my smile.

Far-out.

I want my sounds on the paper. I have to keep my paper. I’m floating. All mine all mine. Paranoid.

A jay, hooray.

It’s so long to smoke cigarettes.

A box.

Putting our ashes in peanut shells.

I just got angry and thought I’d lose control.

Maybe I’d better be alone away from all these people do I like them or don’t I? I don’t know I have to concentrate on my thinking.

I’d like to smile.

Only physical things I feel like I’m falling apart and I can feel it all.

I need to write this down. How can I be trying to discipline myself like this. I’m hurting the revolution.

Rubber what.

Help.

I’m wild too wild menthol cigarettes. I. My face is frozen.

I can’t get anywhere and I can’t get to anyone. I thought I liked all sensations but I’m choking on these. I’m living this life like I always live no by myself I can’t turn to anyone even though I’d like to Albert where are you. I shouldn’t think of him. How am I writing this.

I want to drown to him in this music and maybe if I was holding him I wouldn’t feel like I was drowning. Faces names flying my training literary instinct. This is bad good M. is tapping my ear I hear I hear I hear. I feel tears behind my eyes do I control them or not.

I can’t run away.

I can’t look at anyone without feeling they’re judging me.

The inside of my mouth I feel everything. This writing is the only link I can’t look up or down or I’ll be lost.

Jealousy.

I’m hallucinating and realizing it and loving it and the paper is jelly and quivering. How is my pen staying between the lines.

What level is this? Talking about her California vacation.

Pictures at an exhibition. Observations of a tripping mind encompassing everything too fast thoughts that couldn’t ever be written down.

This is an exaggerated reality how could I sum it all up before the thing even began. So many people so many things all passed through too fast for me to remember. How far away was I from reality?

Albert I never reached him all night though I was headed there from the start. Does everyone feel as paranoid as me. That my subjectiveness will make everyone hate me. Am I bumming anyone out. How could this happen and will it all be insignificant tomorrow and if it is how sad. That I never shared this with him. The paper is swimming and quivering and I’m so physical.

Why didn’t Albert want to trip with me how could it matter anything bad would melt away like everything else no matter how bad people faces.

I love the music I heard this dream. Poor P alone and I’m not helping at all. I can’t stop at all. I can’t sing at all.

Renee is the never ending gesture of always being naked.

Well, there it is. About 10 hours of my drug-induced stream of consciousness writing, hardly the stuff of Bloom in Ulysses, but mine nonetheless. A lot of it reveals my obsession with Albert, my first adult love with whom the timing was always wrong. The rest is in keeping with the internal analysis that has been my constant life companion. Next, I’ll go back to the chronology, junior year of college. In the meantime, this ragged piece of writing stands as my youthful testimony, slightly embarrassing, but worth remembering.

The Living Spaces #4 – College – Sophomore Year and Beyond – A Deep Dive

Prelude

I adore this photo of my husband. He loved diving. After he got certified and gained experience in different locales, the tropics, the Great Lakes, the Florida Keys and multiple caves, he realized that if he’d had more direction as a young man, he’d probably have chosen diving as a career. One time, I was wandering through our house looking for him, calling for him, finally assuming that he’d gone out without telling me. A short time later, I walked into the bathroom and was startled to see him under water in the bathtub, his snorkel and mask on, checked out of regular life for a bit. Made me laugh. I’m thinking that Michael’s deepest dives were on wrecks in Lake Superior. I know that he was certified to 100 feet plus, certainly my idea of a deep free dive. I was glad he enjoyed those experiences. A cold deep dive in full dry suit was his type of fun.

We had vastly different approaches to a “deep dive.” And Michael much preferred his choice to mine. My idea of a deep dive is always a journey into my interior landscape. The striations in the rocky landscape in the photo above are for me, a metaphor for the layers we pile up throughout the course of our lives. Of course we’re not aware of that piling on of layers. Nor are the mountains aware of their compressed deposits on display to those of us who ponder all the life in those colorful lines. I know we all have those layers. As time passes, many get papered over by our cumulative daily experiences. Some of mine are that way, inaccessible, despite my best efforts to explore them. I do have a prodigious memory but it’s far from perfect. What I do have is journals. They’re far from a complete record of my life. But they are certainly windows to the past. And the pages don’t lie. When I explore them I’m confronted by my young self, struggling to grow up. I see all my mistakes, my embarrassments, my shame. Looking back is instructive, enlightening, painful and beautiful. So far I haven’t ripped anything up. This raw journey and exposure I’m engaged in would not be a high priority on Michael’s list. He was always suggesting I get rid of private things I’d kept that he believed were no one else’s business. But I’m not him. One day, my kids and grandkids will be glad I told my truth.

SOPHOMORE YEAR

1969 – “I decided to change. It’s been too many years now, clinging to shreds…”

During the summer of 1969, I was evaluating myself and not liking what I found. I was eighteen. Freshman year of college was a bust. My grades were mediocre. I’d continued to break rules which in the end caused me problems. In my junior year of high school, I ditched 60 Physical Education classes. I have no idea how I managed to get the grownups to allow me to keep my positions as student council treasurer and member of the National Honor Society, but I did. They didn’t make it easy. As as senior, I had to make up every class I skipped, two for one. On swim days, I was constantly wet. So what did I do in college? I skipped two semesters of my PE requirement. When the time came for fall registration I would be encumbered and unable to participate in school until I fixed that little rebellion. I realized that I was creating my own problems but I didn’t seem to be able to stop myself. My high school boyfriend and I had finally broken up. We were still friends but I was determined to move on. When I went back to school, I intended to branch out and try lots of different things. I realized that I was a curious mixture of courage and insecurities. I developed an exterior that was quick-tongued and sarcastic, learning about social games and how to navigate them while being intensely lonely, feeling misunderstood and pining for love. I felt isolated and unable to fit in anywhere. When I returned to the university, I lived in the same dorm as I did before, but lucked into a room with no roommate. I appreciated the privacy while still being able to socialize with people on my floor. Again, those floors were segregated by sex so I lived in the company of other women.

I didn’t trust the appearances of anyone, perhaps because I knew that with me, what you saw was definitely not what you got. Alternative culture was alive and a definite presence. I wanted to test its substance and depth. Early in the fall, I conducted an experiment. In the basement of the student union, there was a gathering place called “The Commons.” When entering the building from the quadrangle, you would walk down a flight of stairs and through a long hallway to get to the The Commons. There you could grab coffee or a sandwich, study, or just have a break between classes. Lots of people sat on the floor or in chairs along that passageway, many of whom were the “freaks,” the people breaking away from the more traditional paths of their fellow students. They were the object of my experiment. On one day I’d dress in jeans, a t-shirt, my hair flowing loosely, moving with a definite strut, and I’d walk down that hall. The alternative folks would make eye contact and nod at me in recognition. The next day, I’d dress myself in a skirt and sweater, with color coordinated knee socks, my hair pulled back in a severe ponytail. I’d walk the same hall, see the same people sitting there and be completely ignored. Yes. I decided I couldn’t trust any behavior on its surface. I felt even more isolated.

I set out to try a variety of experiences I’d resisted during my freshman year. Many of my friends had already dabbled in drugs and alcohol, even back in high school, but I was still slow and careful. The first time I ever smoked marijuana, I got seven joints and practiced smoking alone in my room. I wanted to make sure I could manage myself with a modicum of control before indulging in front of anyone else. I did the same thing with a bottle of Wolfschmidt’s vodka, a dreadful experience and one of the two times in my life I felt the room spinning as I sat on the floor in terror, trying to clutch anything to make it stop. Drinking never was my thing, then or now. I joined a sensory relaxation group which met once a week. The leader put us through a series of exercises in which we first were partnered with whomever was closest to us, then eventually, put us in groups of seven where we performed exercises that were trustbuilders. We weren’t allowed to speak at all. I actually really enjoyed that challenge and wound up making friends with one person, ultimately developing a friendship that lasted decades.

That fall of 1969 was intense for me on multiple levels. My mother had surgery to remove a growth on her thyroid gland. I waited in my dorm room for a call from my dad to find out about the surgery. He told me that it was successful and that the tumor was benign. I knew he was lying. I remember standing in the dark, looking down at my palms held side by side, envisioning sand slipping through the small spaces between them, a metaphor for life and time. I’d been worried about my mother’s health for most of my eighteen years as she was always sick with something. I didn’t know then how subtly traumatized I was by that worry which laid the foundation for my endless quest for a partner who’d provide me security and shelter. I moved forward, an interesting mix of confidence and insecurities. I attended the anti-war moratorium on campus that fall, along with a variety of other political events as I thought my way into a cohesive ideology about what was happening in the great big world. Huge events which were having a major impact on me and my peers. Thinking always about the war, the draft, everyone’s numbers, who might get called up. School was a sideline for me compared to all these big issues.

I was having some casual, careful dates in those autumn months. One unseasonably warm day in early November I met Al on the steps of the Union where he sat strumming his guitar. I’d actually glimpsed him the year before at some freshman street dance. I thought his dancing resembled how a person would look with his hand stuck in an electrical outlet. I promptly forgot him. Not this time. We had a long conversation and soon were involved with each other. We went to see The Rolling Stones a few weeks after we met. After only recently getting an intellectual grip on my wildly fluctuating emotions, I was determined to proceed cautiously in the early weeks of this involvement. Initially I did well. I sensed his fear of attachment pretty fast. That was a pretty normal feeling for a nineteen year old guy. I wasn’t altogether sure I wanted to be deeply involved with anyone either. The times were so tumultuous and unsettling. I was discarding a whole set of ideas that were benchmarks of my young life and wasn’t exactly sure what I was going to put in their place. My friends were all setting aside the social mores of our young lives, and while I was good with the intellectual parts, I was not ready to let go of my personal dreams of one partner for life. After several months of seeing each other, Al was the first to make declarations of love which he quickly qualified as temporary. Meanwhile, my feelings were deepening despite my certainty that we were doomed.

We got through the winter, driving out to the countryside on weekends, doing lots of talking and exploring each other’s ideas. The campus was alive with dissent like most around the country. I made some passing attempts at keeping up with school and made a decision to switch from being a psychology major to an English major, having discovered that there were some serious statistics classes to complete the psych requirements. Numbers weren’t for me, at least back then. During that kinetic time, I read voraciously, consuming philosophy, literature and history as fast as I could. Always a music lover, I was listening to new sounds. I felt like my brain was constantly stretching. Life was exciting and confusing. I was willing to experiment with my mind, with drugs, with politics and new experiences. In the atmosphere of free love though, I was pretty sure I’d be the last virgin on the planet. But I wasn’t ready to move in that respect. I wrote in my journal that I never wanted to look back with regret on the big decisions in life. I held onto that. Second semester moved quickly, a new decade had begun and when I turned nineteen in May of ’70, the growing pains of the previous year and a half had devolved into me wondering how I’d managed to fall in love knowing that I’d jumped from the proverbial frying pan into the fire. When school ended, I went back to Chicago to my third year of my summer office job. That would be the last time in my life that I’d live in Chicago.

Winter Views

Ordinarily I don’t pay much attention to weather. I never saw the percentage in caring about it as what happens outside is completely beyond my control. I understand that some people have Seasonal Affective Disorder which makes the gray, dark months exceptionally hard. I have empathy for them, knowing that they have as little control over their response to the gray and the cold as any of us do to the whims of meteorological conditions.

For some reason though, this winter has felt long to me. The temperatures haven’t been unusually bitter nor has the amount of precipitation been extreme. Counting days, though, I’d have to give drab, neutral skies the numerical edge over sunny ones. Despite the desire for color and mucking around in the garden, I still think it’s possible to appreciate the beauty of nature in its stark state as opposed to its lush one. I give you some photos of life in the midwest during winter. This along with everything else, will eventually pass.

The Living Spaces #3 – College – Freshman Year

I turned 17 in May, 1968 and graduated from high school in June. During the following summer, I worked downtown in the Chicago Loop. Some of the money I made would go toward paying for college and the rest I was allowed to spend on my wardrobe for the first time in my life. In September, my parents drove me to Urbana, home of the University of Illinois where I was registered for the fall and hopefully, all four years of college life. Seemingly, I was ready to go. Despite my mediocre high school academic career, my unfair weighted honors classes, based on potential rather than performance, served me well. My grades were good enough to have fulfilled many of my core college requirements, and so, I had class choices available to me as a freshman. I had a small Illinois State scholarship. I was going to live with my best friend Fern in Allen Hall.

I was still involved with my boyfriend Rich who was living in Chicago, but I planned on dating. My parents helped me move my meager possessions into my dorm. I had a clock radio and a lamp along with clothes, toiletries, school supplies and posters for the walls. A minimalist life which was fine with me. After Fern’s parents unloaded her things, we went to the Town and Country restaurant at Five Points and had a final celebratory dinner with our families. Then they went back to Chicago and we began our new life.

In truth, I couldn’t have been more ill-prepared. I was young and essentially aimless. I had no aspirations for any type of career except for a vague interest in psychology. I’d grown up as an observer of people, always trying to understand interactions and to find a place where I fit in the world. Psychology seemed like a reasonable start to this part of my life. Mostly, I knew a lot more about what I didn’t want to do, rather than what I did want to do. No one had ever engaged me in conversation about my future plans, not even my school counselors.

I remember the first days of college. Back in those days, registration took place in person in the huge steaming Armory where I stood in line with everyone else, clutching papers and a course catalogue, hoping there’d be room for me in the class sections I’d chosen. If one was closed, you hurriedly got into another line. I pieced a schedule together. On the first day of classes I made it to Psychology 100 at 8 a.m., stood in front of Gregory Hall for a minute and turned my back and walked away. An inauspicious and telling start to my academic career. I was thinking of other things.

I didn’t have much guidance from anyone. I don’t think either of my parents asked me a single question about school. Ever. They intimated that education had value but never discussed its practical application. They were basically passive, responding to life’s crises rather than being proactive about anything. I knew that they thought I was smart and that meant something to them, but as far as exploring what my interests were and how they might help me? Not on their agenda. I’m not angry about it. I was a victim of benign neglect, nothing more. I spent a lot of my teenaged time trying not to give them reasons to worry about me. As the third kid in the family, with over 5 years and 8 years between me and my two older siblings, it took awhile for them to get down the line to me. My brother and sister were caught up in issues more complicated than my little kid ones. I knew my parents were stressed a lot of the time. Easygoing by nature, I mostly wanted to not be a source of anxiety for them. So I wasn’t. I simply glided along with a smile on my face, never giving them any indication that I had no clue about what I was doing. When my grades started slipping in high school, I would get a mild admonishment from them on occasion, but not much else. Somehow I still managed to be in the National Honor Society. I didn’t deserve it but they were easily mollified. My dad dropped out of high school as a sophomore and although my mom finished, she never believed she had more than a high school education in her future. They were so bright. But they were intimidated beyond their limited experiences. I was an adult before I figured out that I would’ve benefited from more input from them, from anyone. The proverbial spilt milk.

Left to my own devices, I decided that my first task in college was to shed all the societal rules that shaped my world in high school. Within a few weeks, I realized that meant getting away from Fern. What had worked for us since we were seven wasn’t going to any more, as we each were ready to fling off our past selves, to try on who we really felt we were. Her presence felt too confining for me. So after less than two months, I got myself out of Allen Hall and moved to Saunders Hall, room 324 where my new roommate was Penny Conrad, daughter of a Chicago television personality who played a kids’ show character named Elmer the elephant. Penny was a pretty blond girl who was a very nice person with a steady boyfriend and an urge to pledge a sorority. She moved into the Tri-Delt house by second semester. I was alone in a double dorm room which suited me. That was the first time in my life that I’d ever had my own room. Sorority rush was one of the roadblocks between Fern and me. I was in a sorority in high school which was ironic as I hated their clubbiness and the exclusion of others. Once I was finished with that life I was determined to never live it again. At the time, everyone I knew was going through the “rush” process. I’d stand on the street corner watching girls troop down along, all dressed up, getting ready to put themselves forward to get a pledge bid. The idea that anyone could vote on my worthiness for anything was repugnant to me. Stepping away from that was the beginning of growing into myself. Fortunately, my friendship with Fern was strong enough to survive our differences.

I was still quite friendly with lots of high school friends who had come to this big state school in a sizeable group. But I was looking outside them, trying to figure out what I really wanted. And I was confused. I spent a lot of time fumbling around, feeling listless and out of place. I went to the classes I liked and scraped along in the others. Grades were sent home to parents and when my midterm results, 2 C’s and 2 D’s, made their way into my dad’s hands, he called and threatened to make me come home if I didn’t do better. I put in a bit more time and lifted them each by one letter. Mostly, I was drifting. I was thinking a lot about social and political issues. There was the draft and the Viet Nam war and civil rights and women’s issues. As irrelevant as high school had felt, my tether to a mainstream life was getting increasingly more frayed. But I was afraid to move away from the familiar.

My high school boyfriend sent me flowers. We wrote each other letters. He was familiar and safe and absolutely not loyal. But he was always nice to me. One weekend he drove down for a visit. At that point in time, dormitories were segregated by sex. In the common space of the lobby, monitors trolled the couches, making sure that if a couple was embracing, there were at least three of their four legs always touching the floor. I was an innocent young woman, socially and politically progressive but personally, very conservative. I wanted to have only one real love in my life, the person I’d marry. I wasn’t ready for that step but we wanted to prove we’d left high school behind. We decided we’d try to have some privacy and rented a hotel room for the night.

I felt embarrassed and uncomfortable even though I knew that I had no intention of crossing any significant boundaries that night. Playing at being a grownup was what that experience felt like. I brought a blue and green checked sleep shirt with a Victorian collar trimmed in white lace and shared a bed for the first time with my boyfriend, who was actually more like a platonic friend than a lover. It was kind of familial in a scary way. After that, he went home and I went back to bumbling my way through school.

Probably the most significant thing that happened to me that first year of college actually happened when I went home for winter break. My father was working, my mother was out and my sister was at school. I was wakened from sleep by the telephone. My grandmother was screaming at me that something had happened to my grandfather. I hung up, called the emergency operator, flung on my clothes and ran the mile or so from my parents’ apartment to my grandparents’ place. I remember bounding down snowy sidewalks, wearing boots with no stockings, the skin of my feet scraping against leather as I ran. I beat the ambulance and leaped upstairs to find my grandfather lying on the kitchen floor, robe open,while my grandmother screamed and keened next to him. That was the first time I’d ever seen a naked man. I pulled his robe over him just as the EMT’s came in with their gurney. They gave my grandmother a sedative and we all piled into the ambulance which went tearing down Lake Shore Drive, siren blaring. I saw other drivers looking at me and was aware that I was having a lifetime experience, an eighteen year old kid in the odd position of being the adult, despite my grandmother’s presence, responsible for the health of another while everyone was watching. At least that’s what it felt like to me. I spent a long day in the hospital in that time of no cell phones and little technology. Eventually my parents came to pick me up and on the drive home, my dad looked at me in the rear view mirror and said, “you know you saved your grandfather’s life today.” I hadn’t really thought about that at all. In those days, there were two winter breaks, one for holidays and one after final exams. I returned to school and after completing the semester, I went home one more time.

My grandfather was frail the last time I saw him. I remember noting that his neck no longer filled out the collar of his shirt. He was seventy-five years old which seemed ancient to me. He died a few months later. I took a Greyhound bus home for the funeral, rolling along late at night. The bus stopped at all the small towns on its two lane highway route, which it followed until joining the interstate out of Chicago, which wasn’t completed for a number of years. The trip took twice as long as a regular car ride. I arrived in the city, bleary-eyed and contemplative. My grandfather wasn’t my first death but the event was a marker for my awareness that change was inexorable. As a seventeen year old college freshman, I was suspended between my childhood and my adult life. I was trying to hang on to some personal safety and security but life was going to do its thing whether I liked it or not.

The summer after my freshman year I went back home to work at the Cook County Credit Bureau which had relocated its offices from South Wabash Street to North Michigan Avenue near the Chicago River. I rode the Lincoln #11 bus a commute an hour and a half long each way. Sometimes I’d be reading but more often, daydreaming about how to move on, to stop clinging to what was safe and known, to venture into what was different, to stop letting fear and insecurity dictate my future. Sophomore year was going to be different. One way or another.

Levelled

I learned a long time ago that daily life can change in a flash. That doesn’t necessarily mean I’m ready when the flash happens to me. I’m not even talking about the really big changes either. Just one in which a common illness knocks you off your feet for the bulk of a week. Despite my having gotten a flu shot, some slippery version of it got past my immune barriers and leveled me within a couple of hours. What a strange week it’s been. I felt a little “off” Monday afternoon as I sat in my geology class, Life Makes Rock, 4 Billion Years of Biomineralization. I know, it sounds boring. But it is actually stimulating and exciting as our over-achieving professor with appointments in multiple disciplines, weaves together a fascinating story based on the intertwined relationship between water, minerals and life itself. Our first lecture introduced us to pioneering scientists through the centuries who worked to explain and refine the classifications of life. I was particularly dazzled by the illustrations of the Darwinian scientist Ernst Haeckel’s book called Art Forms in Nature.

I felt one of those tell-tale tickles at the back of my throat in that class, but shrugged it off as I had to babysit for my grandsons that night. I managed my little job, all the while wondering if I could beat back whatever was happening to me. Whenever I start wondering if I’m okay, I know that I’m teetering on the edge. But I just kept on going. The next day I was out and about, running errands like I would any other day, followed by hitting the pool for a midday swim. I started coughing there, and within an hour or so, I was transformed from okay to pathetic. I developed a deep painful cough and a fever very fast, and was suddenly a sick person. I felt too rotten to do anything. I missed the rest of the week’s classes. I had to bail out of a committee meeting on historic preservation which is one of my volunteer activities. I felt dreadful that the meeting was then cancelled because there would no longer be the quorum which is needed for decision-making. What an abrupt change. Because I’ve been truly fortunate with my health to date, I found that when I reached for some of the palliative medications that people often have in their homes, mine had all expired.

I felt stupid and illprepared in addition to feeling dreadful. The fact is, I’m a terrible patient. I’ve always looked at illness as my body’s way of betraying me. I am irrational, grouchy and far from a sympathetic person. I wouldn’t want to take care of me. In addition to the overall sense of physical misery, the timing of my illness couldn’t have been worse. Last year, I’d signed a contract to have my old house sided as its shingles were broken everywhere, paint had been worn away and water issues had caused a sickly mossy green color on its northern side. I’ve been avoiding such a big job for a long while, because in my previous experiences with contractors working on this challenging nineteenth century lady, complications have always arisen along with the requisite negotiations about those issues. Although fully able to work my way through these situations, I’ll admit that always being the go-to person for problems has lost some of its mystique. Yes, I can do it. But I sure am tired of it. Last week, after months of delay, I received a call from the company announcing that all the materials for the job were being dropped off in my driveway, soon to be followed by a work crew. Despite the fact that it was the end of January in the midwest, the team was ready to go. Zero to sixty, just like that – no warning, no preparation.

As anticipated, things got off to a bumpy start. The power tools brought to prepare the surface of the house weren’t strong enough to go through the thick ancient shingles. I was told to prepare for the hard banging of handheld hammers. One guy said, “if you have anything you value hanging on your walls, you might want to take them down.” I made a wild pass through the house, hauling things down as fast as I could. Forty two years worth of decorations to be dealt with in a few brief minutes. I missed a room. One of the commemorative records from Michael’s music store crashed down from a wall, broke and then took out one of the little statues I’d saved from my mom’s house. The break turned part of it to powder so it can’t be repaired. All from an external job.

My backyard is profoundly damaged. The quality control inspector from the contractor’s firm admitted it. With the weather alternating between cold, warmer, rain and snow, the ground out there needed at least a bit of protection from all the materials and equipment laid on it, even if only a few sheets of plywood. I’m not sure of how I’m going to manage all that when this is over. One step at a time.

The thuds of the hammers, the bass from the workers’ boom box, the clinks of falling debris and the guys’ chatter have been the background accompaniment to my aching, empty head, chills and rib-rattling heaves. I’ve read virtually nothing in the past week, at least nothing longer than a few paragraphs. I’ve got a pile of stuff next to me on the floor that I’ve intermittently moved to my lap before putting it aside again. I have a list of simple chores that need doing and I’ve simply spun from one to the next, acknowledging that I need to do them while doing none. Trying to muster the energy to do anything beyond basic maintenance has proven elusive this past week. Deadlines lost their power. I have nothing profound to say. I am remarkably indecisive and all things have equal importance which feel essentially like no importance at all. As each day of inactivity goes by, deconditioning occurs, both physical and mental. I’ve gone from active engagement in life to feeling somewhat like a gelatinous mass oozing between my living room recliner and my bed. All from some version of this little virus that packs a lot of power into its insidious structure.

A sobering state of affairs that makes me ponder the fragility that always lurks just this side of what we assume is reality. Getting flattened out so fast is a reminder that taking any part of life for granted is pretty shortsighted. The world is filled with people who got stunned by a rapid twist of fate that altered the trajectory of their lives with little or no warning. I suspect that trying to stay aware of every possible negative landmine that can knock us off our path, either temporarily or permanently, is probably not a sustainable attitude to cultivate. It’s too unnerving to feel that vulnerable on a regular basis. But many of us have no choice besides adapting to what seemed impossible only a flicker ago. I’m thinking I’ve turned the corner on this brief detour from my life but I’m aware that an unexpected price was exacted of me these past days. I have to gather myself back together and rejoin the world as opposed to just sitting here, waiting to get better. I’m one of the lucky ones with some autonomy regarding my existence. For so many others, whatever happened to them won’t allow for that option. Note to self- I’m going to remember that. Like I’m going to enjoy the end product of my siding job when all the annoying problems are behind me. Every day has a lesson, whether we like it or not.