- Another World
High mountains hold a mystery and an attraction for me. Part of the reason would be the difficulty of reaching places like that, where I grew up in Southern California. The nearby mountains topped out at about four thousand feet, not high enough to outgrow the low scrub brush that covered them, too low even to rise above the brown haze of smog from the city that obscured the view. The Sierra Nevada mountains, the “high Sierras” we called them, stretched above timberline into bare granite slopes that could only be reached on foot. Getting to those places challenged our limits, out-of-shape young hikers that we were.
On one backpacking trip in 1961, we hiked across trackless slopes to an altitude of 12,600 feet, resting at a pass called Alpine Col. I remember my muddled, oxygen-starved state as we sat there, viewing the deep waters of nearby Goethe Lake and distant mountain peaks rendered blue in the high-altitude air. That pass had almost mystical significance in my mind, feeling like another world to me: a realm with unimpeded vision of the surroundings, with crystal clear air that imparted a heightened consciousness in ways I was never able to define. I couldn’t reach that level without tremendous struggle and effort, making it stand out in my memory.
In 2018 I drove through Rocky Mountain National Park, amazed by the road that reached 12,183 feet above sea level, offering a view of the surrounding mountains that could only be attained with great effort in California. Again I felt the mystical properties of the place, set apart by an unmistakable difference in its light and the feeling of the air.
Other tourists who drove there would have noted the unmatched clarity of the view and the astounding valleys, cliffs, and peaks, but they wouldn’t associate it with mountainous landscapes only seen on foot. What they saw couldn’t fail to impress them, but they lacked context to understand how spectacular it really was.
- Leaving Europe
I’ve long wondered why my 6th great grandfather left Europe in 1752 to come to America. I suspected he wanted to avoid conscription.
A dive into European history supports the idea. He was born in Koblenz, a part of the Holy Roman Empire then under Austrian archduchess Maria Theresa. The Austrian War of Succession concluded four years previously., with 350,000 dead among the countries fighting. Europe had no less than 17 wars from 1700 to 1750. A reading of history is appalling. The nobility constantly sacrificed their subjects to aggrandize themselves at the expense of other nobles.
My ancestor left Europe before he would have been forced to fight and die for the ambitions of whoever happened to hold the title then. It gives me a different outlook on the hereditary nobility of today: the heirs of selfish bastards whose goals were more power and more wealth.
I’m relieved that my ancestors were commoners, as far as I can tell.
Never miss watching a sunset.
You don’t know which one will be the last you’ll see.
Years ago, Diane and I saw The Sheltering Sky. In the final scene the heroine meets an old man (Paul Bowles, the author) who asks her “How many more times will you watch the full moon rise? Perhaps twenty. And yet it all seems limitless.”
As that sunk in, it spurred us to realize sunsets were evanescent as moonrises, and less seen as we busied ourselves inside. We resolved not to miss a sunset, and made it part or our day’s routine.
It became a family tradition, one we all shared as a way to connect, a moment to savor life’s beauty, and a reminder of our momentary residence on earth.
Our daughters grew and moved away, but we reminded them by text message whenever we saw a moment of beauty: “SUNSET ALERT!
Diane and Jennifer are both gone now. I still text alerts to Lauren, as she does to me and her husband. We can’t tell when the last one will happen.
- Bonus Time
Support group usually gives me something to think about. We talked about friends who fade away when you become a caregiver, of family who stand by you, or friends who do the same. I started thinking about her and a comment she said recently, of not having grandchildren.
When she said that, I felt that it was an issue for her, and for me. There is no one to live on after us. Not exactly true, because we each have a living child. But the line ends with them. Strange how that should matter. Is it an inborn feeling? Or a cultural expectation? I don’t know.
What I know is this: she and I have each other. There’s no guarantee how long that will last. Our life expectancies have been lived out. These moments are a bonus, and it is up to us to make use of them—with as much life, love, enjoyment, and fulfillment as we can create and share. I’ve seen how it can end, and what we have now is precious.
- Who Am I?
Renewal (4 of 4)
Lauren came to stay with me while Diane was in hospice care. By the time Diane died I was alone except for Lauren. We prepared a memorial service for Diane and started planning a trip to the west coast. I had the idea of scattering her ashes at Mirror Lake, where we met. After the memorial Lauren and I finished planning our trip, and we spent six weeks together on the road in our camper.
After we got back, I started writing my book, and I began to reflect on the past and the future. I began to look for ways to connect with the community again. I still belonged to the spouses’ support group and kept attending weekly meetings. I joined a few other groups—hiking clubs, a ski club, a writers’ group, and a running club, as well as alumni groups I joined years before. None of them provided the kind of personal contact I needed then. I found out about the Unitarian church close by. I looked into it and found that their basic principles agreed with my own. I wanted to know more. I attended a service, with Lauren and her husband Kevin along for “moral support.” It was their semi-annual all-music service. The choir sang many of the songs I liked. When they sang, “This Land is Your Land” by Woody Guthrie, Lauren leaned over to me and said quietly, “Dad, these are your people.” I joined the church the following spring and became active.
Grief is complicated when your love dies after a long illness. I spent years caring for Diane, and my mind was full of the time she was incapacitated, diminished by disease, and less and less capable of knowing what she experienced. When she finally escaped the bonds of that life, she could rest.
During that long decline I said farewell over and over again. Each time I did, I lost a little more of her. At last, the end came. She was released from her pain, and I let go.
Losing the victim of a long illness is a lot different from suddenly losing someone you love when you didn’t expect it. In 1981, my daughter Jennifer had radiation therapy for cancer. After years of problems due to the radiation, she had surgery in 2015 to repair the damage to her heart and lungs. The surgery failed. Her scarred and damaged heart couldn’t stand the strain any longer and stopped its struggle to keep her alive. Jennifer’s husband Mike, Lauren, and I gathered by Jennifer’s ICU bed. We all knew that her situation was hopeless, and we gave consent to stop her life support machine, ending her life. While we were with Jennifer, Diane stayed in a waiting room with friends, not even knowing why we were at the hospital, unaware anything was wrong. Jennifer was once Diane’s reason for living, and to know the truth would have shattered her.
We stayed by Jennifer’s bed for a short time, then rejoined Diane in the waiting room. I took her home, saying nothing about what just happened. Later, when she asked why Jennifer didn’t come to see her, I told her Jennifer was working on a big job in California and would be away for weeks. Every time she asked, I told her the same thing. After a few months Diane stopped asking when she could see Jennifer again.
I continued to care for Diane with no change in her life, except we no longer visited Jennifer, and I didn’t mention her. There was no time to mourn Jennifer then because I had to see to Diane.
This winter I was watching a show on TV called “This is Us,” where the main character died suddenly and unexpectedly. He was killed by severe damage to his lungs from smoke inhalation, which placed an unbearable burden on his heart to deliver blood. The strain was too much for his heart, and he had a fatal heart attack. The story was so much like what happened to Jennifer that it took me back to that hospital room with the still body of my daughter. Then, at that moment, I felt the impact of her death and I couldn’t stop sobbing. I held my friend, who comforted me as I mourned the death of my daughter fully for the first time.
When I wrote the book about our lives, I began to remember and rediscover the woman I loved and the life we once had. I’m still doing that, four years after Diane died and ten years after I took over her care. As I rediscover love now, I can remember how love was once, and those memories remind me again of what we lost. Losing love has made me appreciate how precious and fleeting all of it is and cherish what I’ve gained in the present.
It takes time. A year and a half after Diane died, I started to date. I made mistakes, as anyone might do who didn’t date much before. As I learned more about myself and who I was looking for, I found Ann. We were right for each other, and we grew close. That doesn’t stop me from grieving. That will go on, in some form, for the rest of my life. It will always be a part of me. But I am going to live.
- Who Am I?
Dementia (3 of 4)
We used to call it senility, or senile dementia. It isn’t a new disease, but the incidence of dementia has gone up as our population gets older, and as other diseases that contribute to dementia have also risen—heart disease, diabetes, and other things, like smoking. Nearly half of the seniors helped by caregivers have dementia. In 2021, there were 11 million Americans giving unpaid care to 6 million people with dementia. That could double by 2050. The Alzheimer’s Association estimated that caregivers provided 15 billion hours’ worth of aid in 2020, and that 10 billion of those hours were given by unpaid family members. Most caregivers are women taking care of elderly parents. A minority of caregivers are the husbands or wives of a spouse who has dementia.
The Alzheimer’s Association has done an amazing job of spreading awareness of Alzheimer’s disease. But in addition, the Association website lists eleven other kinds of dementia. Sometimes we refer to any dementia as Alzheimer’s disease, because it’s the most common type and it’s universally recognized. Alzheimer’s disease is degenerative, and always fatal unless some other illness like heart disease acts first. No one recovers. Unlike diseases where recovery can happen, long-term care for a person with Alzheimer’s has only one ending.
Living with a person who has Alzheimer’s is hard and caring for them is harder. One couple I know had a very poor relationship when he developed dementia, but she cared for him anyway, out of a steadfast love and a strong sense of morality. Caregivers tend to say, “It’s what anyone would do.” Not everyone would. Caregivers I know have had friends and even family members drop them because they couldn’t handle the behavior of a person with dementia.
Once I became Diane’s caregiver, our relationship changed. We never stopped loving each other, but how we felt could vary from day to day. I’ve heard caregivers say that the worst feeling is having one who’s known you for a lifetime suddenly not know who you are. Some days Diane didn’t recognize me. One day I remember she seemed uncomfortable when I was in the living room, and when I left to go in the kitchen, she said to our daughter Lauren, “I’m glad he’s gone. When is Ron coming back?” When I came back into the room, Diane seemed to know me, and greeted me as if I’d just returned from a trip.
I got tired of doing every little thing for her, including basic hygiene. But I had started helping her with that when she developed colitis years earlier. It was a challenge then. Taking over more of her care wasn’t new; it just meant doing more. Year by year, I took on more of it, and she accepted it as normal. I still loved her, but my feelings changed as she became less of a romantic partner and more of a dependent. I got fed up at times, and so did she. Sometimes she didn’t know who I was, but she did seem to know that I was always there. There were many challenges like that, and when I ran out of ideas and energy. I joined a support group for Alzheimer’s spouses that met weekly.
By 2017, I’d spent more than five years caring for her full time. Simon was an old friend who’d spent several years as a caregiver for the Bancroft home, and he agreed to stay with us and look after her during the day. That gave me time to take care of ordinary activities like shopping and doctor’s visits. That summer, Simon and Lauren watched Diane while I took respite for a week. I drove up to Vermont in my camper to see an old friend I knew since college. During that week I had a birthday, and back at home, Lauren, Simon, and Diane signed a card for me while I was gone. Diane signed the card in her shaky handwriting:
That was the last thing she ever wrote.
It was a difficult time for me emotionally, but I can’t remember how I felt then very clearly. While I cared for Diane, I went from one crisis to the next, doing what I had to do and not stopping to reflect on it—that could come later. I wrote what I could in my journal, but at that time I wasn’t consciously aware of everything, and couldn’t express all of it. It took time and a lot of different experiences to bring those emotions to the surface.
As fall passed, I knew Diane was getting sicker and I called the doctor more often. Around Thanksgiving, she got worse and didn’t recover. Illness overtook her. By January, her doctor said it was time for hospice to come in. I told Lauren, and we cried together. We knew the end was coming.
- Who Am I?
Marriage and family (2 of 4)
The story of how I met Diane is told in the book, so I won’t repeat it here. She wowed me. After clearing a number of obstacles, we were wedded 10 months after we met. We had a small reception at her parents’ house near the little chapel where we married. Someone gave us a large bottle of champagne as a gift, and Diane drank a lot of it. I drove our camper to a small inn for our one-weekend honeymoon. Diane had too much champagne to eat dinner in the restaurant, so we ate in our room, then went to sleep. The wedding was anticlimactic since we’d been living together for months, and we were relieved to have it over. The following week, we embarked on a trip in the camper, just the three of us, to the Pacific Northwest, stopping briefly at my uncle’s house in Vancouver.
In our life together we moved a lot—to Colorado Springs, Minneapolis, Vancouver, Renton, Seattle, San Gabriel, Medford Lakes, Long Beach Island, Haddonfield, and finally Cherry Hill. I remember one morning during those moves, waking up and staring at the ceiling, with no idea where I was. We finally spent more than half of our lives in New Jersey, which was the last place we ever thought we’d live.
In college I didn’t exactly flounder—I graduated in the top half of my class—but I drifted through majors: mathematics, philosophy, French, humanities, sociology, and film. After the tumult of 1964 and 1965 I transferred from Berkeley to UCLA, and I was a film major when I graduated. Above all, I wanted to get a job and become independent from my parents. That year at UCLA I began to try dating. A crude computer dating service existed, and I signed up. I matched with bright girls mostly, but that service had no guarantees of compatibility. Muriel was one girl I dated. She was a producer’s daughter and lived in Bel Air. She broke up with a boyfriend and I met her on the rebound. She was interesting.
One evening I took her to a party where her ex boyfriend was present, and he mentioned working as a programmer for the RAND Corporation. Color me competitive. I was in my last term of college, and somehow that gave me the idea that programming was a good job. I was totally clueless about landing a job in the film business, and it wasn’t working for me. I started looking around for programming jobs and landed a job as a programmer trainee at a company that was building an air defense network for the USAF.
They gave me a draft deferment—that was important because the Vietnam war was raging at the time, paid me to train full time, and taught me computers and programming languages. It was unlike anything I ever studied before, and I was very good at it. During the next five months I learned the equivalent of a master’s degree in applied computer science. Later I went to night classes and picked up an actual computer science degree. In 1982 I was between contracts, and the next thing that came up was a new networking company that was created by the breakup of the Bell System. They needed technical writers who could understand computer systems to create written instructions. I convinced them that I knew how to write, and started another career. For the next thirty years I wrote technical manuals and managed writers For the Y2K effort in 1999 I became a web developer and did some work in that area as well. I retired in 2012 after 45 years in the computer business.
- Who Am I?
Note: this post is one of four I adapted from a talk given to the Unitarian Church in their continuing session “Tea and Odyssey,” an exploration of people’s journeys through life.
My early life
My grandparents were farmers, born in Missouri. They migrated to Nebraska to raise wheat, chickens, and families. Their ancestors were farmers all the way back to the Middle Ages in England and what became Germany. To care for their crops, livestock, farms, and families, they learned to do everything for themselves, and not to depend on anyone. During the Depression they followed that ethic and passed it on to their children, even when it meant cutting themselves off from a community that could help them. My parents taught me the same values.
My parents had two boys: My brother Roger, 3 years older, and me. We grew up in Southern California, where my father worked for the aircraft industry. My parents stressed education and wanted both of us to graduate from college even though they hadn’t until much later. Roger got a football scholarship to Whittier College, and I got an academic scholarship to UC Berkeley. He went on to become a Clinical Psychologist, and I started working in the computer industry after college. I earned a master’s degree in Computer Science much later.
Like many Midwestern farm people, my parents didn’t talk a lot, held back their feelings, and avoided arguments. I learned to copy them and didn’t learn to express myself until I was older. My father in particular didn’t give us much affection. He came from a broken home. His father married young, left his wife and children, and literally ran off to join the carnival. I never met my grandfather. When he died in 1952, he owned a traveling carnival in California. Maybe because of that, my father disliked entertainment as a career, and he discouraged my love for performing music.
They read a lot and encouraged us to read. My mother took me to the library on a regular basis, two miles away from our house, and saw that I never had an overdue book. By eight years old I had read every Laura Ingalls Wilder and Doctor Doolittle book in the children’s section, and I was sneaking into the adult section to read science fiction.
Strong beliefs about right and wrong formed their moral code. Not stealing or lying were the obvious rules. I was a kid, so naturally I broke them. One day in 4th grade, I stole a quarter from my mother’s dresser where she kept change, walked two blocks to the candy store, filled up with as much as I could think of (and still had change). I cut school with a friend, and we hid under a bridge, ate the candy, and told each other dirty jokes. I don’t remember getting caught and punished, so I must have pulled it off. Despite my wayward impulses, I managed to learn moral and ethical rules, and eventually I briefly majored in Philosophy at Berkeley and studied ethics.
Nominally, my parents were Methodists, although they never said much about it, and I can’t remember them ever attending church. They dropped me off at Sunday school when I was in 4th or 5th grade. I sat in the back with a fellow rebel and made snide comments. I didn’t like the teacher, and I suspected she was insincere about liking us. Later in Minneapolis, an offshoot from the antiwar movement was called the Jesus Freaks. They influenced me to study the New Testament to see if it supported Liberation Theology. I didn’t reach any firm conclusions and gave up the effort.
- The Tools of a Writer
January 24, 2022. A New Year, a new journal volume. Will this year fill an entire book? Will it be fewer words, or more? Such occasions direct my thoughts toward the mechanics of writing and away from the ideas that need to be set down on paper. Let it out and be done for another year.
My journal was filled, so I looked for and found a new journal to fit my leather cover, the one Lauren gave me some time in the 1990s. I’ve used it continually since then. Giving attention to the vehicle for my words makes the words seem more important, and worth noting.
Back in 1992 I bought a fountain pen to use instead of a ballpoint pen with its renewable and disposable fillers. I wanted to pin that would not create waste to go into a landfill or the ocean. I bought a bottle of green ink, to symbolize my environmental aspirations. I liked that pen. I paid $50 for it.
One day at the bank, after we moved to Haddonfield, the pen slipped over the top of the ATM. The bank would not move the ATM to retrieve it from behind the machine. They paid me $50 for the loss. It happened that my parents sent me $75 for my birthday about that time, and New Jersey Art Supplies was going out of business. They had pens on sale at half price. That’s how I bought a Mont Blanc Meisterstuck No. 146 for $125, the same pen I’m using now to write this.
My words, you see, do not come cheap. With such a writing tool, and in such a notebook, these words are intended to have weight. I care for the journal and the pen as they deserve. Their replacement cost serves me as a reminder of the value of the words I use them to produce.
The ink that forms these words should not be ignored, either. For a time I experimented with some odd, old-fashioned ink I cannot remember now. It never flowed quite right. After several years of thinking my pen was the problem I ran out of the old ink. Its replacement was a bottle of Montblanc ink that worked so flawlessly that I soon used it up.
Balking at the expense of another bottle, I bought a bottle of Parker ink to replace it. I kept the Montblanc bottle and refilled it with Parker ink. I have about half of it left.
So equipped, let the words flow.
- Another world
Winter seems a good time for reminiscing, with cold winds handicapping my outdoor activities.
I saw a post on Twitter featuring a lake at night, high in the mountains of Tierra del Fuego, an environment of thin air, rocky slopes, and water. Surrounded by fierce crags, to its right a talus slope descended at a forty-five degree angle into the deep blue water. It reminded me of an afternoon almost sixty years ago in the Sierra Nevada mountains of California.
Our group of six hikers– three adults and three Scouts–was short a day’s food because of a mixup in packing for this side trip, and we were hungry. We were camped in the Evolution Valley and on our way to rejoin the main group on the other side of the pass. We packed up and left camp, climbing toward Alpine Col, a 2,500 foot ascent. We’d be leaving the trail and walking cross-country. I plotted this route with the aid of Starr’s Guide, a little red book that described all the trails in the Sierra Nevada. I was just sixteen.
We left the John Muir trail above timberline and headed up Darwin Canyon toward Alpine Col. Above one nameless lake we stepped carefully across a steep snowbank that descended to the water’s edge. One slip there would land you in ice-cold lake water. The slope in Chile reminded me of that snowbank
We struggled over boulders toward the pass, rewarding ourselves with a rest stop at the top, and a view of the incredibly blue waters of Goethe Lake below us. In the far distance sat the cone-shaped Pilot Knob, where I climbed with my brother-in-law and the Sierra Club thirteen years later. After entering our names in a register kept in a tin can under a rock, we descended.
Hours later in near darkness, the austere world of bare rock, water, and snow behind us, we arrived at the camp we’d left three days earlier. Our main party, food, and a campfire greeted us.
- Marriage and Child-Bearing
Diane’s life continued to follow a path of poor judgment, rash choices, and awful consequences, leading from one disaster to the next. When she met Tom they were both 18 years old. She was drifting through her life, rootless. Tom was drifting into schizophrenia. The two of them felt powerfully attracted to each other, pulled by their attraction and slowed by little else. Their relationship lasted, on and off, through eight years.
As Tom’s mental state grew worse, he would break off their relationship, which had predictably bad effects on Diane’s life. After one such breakup she left California for Minneapolis again. While she lived there she dated, became pregnant, and self-aborted. She nearly died from hemorrhaging. When she returned to California, Tom knocked on her door.
Once again, Tom deteriorated, and he broke up with her. Left on her own, Diane found work and set out to live on her own. One weekend she met a young man just returned from the Army, on his way to start college. The attraction was strong and mutual, and within a weekend they left for Las Vegas to marry. Diane was 23 and did not need anyone’s permission. A few months later, pregnant and disillusioned, she drifted back to Tom. She separated from her husband and found a small apartment she could afford with AFDC and help from Tom’s family.
Tom’s illness increased. In a state of psychosis he convinced Diane to travel to Tijuana, Mexico to marry him. By then he displayed open signs of mental illness, but Diane was unsure of herself and did not realize how severe his illness was. She had a baby to consider, and had made a commitment to herself and Jennifer that no matter what the provocation or temptation, she would not lie again. She took responsibility for her daughter and for Tom, caring for him as he became progressively more insane. Tom’s parents knew by then that something was wrong with him, though they refused to admit to its seriousness. They relied on Diane to care for him, and helped support them, paying for Diane’s classes and her dental work. When he attempted suicide the parents paid for his confinement in a private mental hospital and covered his episodes of bizarre acting out.
But when Tom appeared to Diane as though he might harm her or her daughter, Diane left him. She separated from Tom and started to plan life on her own. She decided to do something completely new, and climb Mount Whitney.
- Teenage Years
After her release from Sauk Centre at age 15, Diane continued her trajectory of the excluded, rejected girl, seeking the company of those whom the system rejected and stigmatized, written off as hoodlums and punks. Her family kept moving between Minnesota and California, always unable to succeed and thinking somehow their fate would be different when they started over one more time. Diane stayed with them, with nowhere else to go, most times sleeping on the living room couch wherever they lived.
On a date with a sailor she met in Long Beach, California, Diane drove him to Port Hueneme in his car because he was too drunk to drive. She had no driver’s license or experience driving, and rolled the car along the way.
By age 17 Diane missed her boyfriend Bob in Minnesota, where he was imprisoned in the juvenile facility at Red Wing. With her last cash she bought a one-way bus ticket to Minneapolis in midwinter. Without telling her parents where she was going she boarded the bus. It stalled in a blizzard in Iowa, forcing the passengers off, who had to walk more that a mile to shelter in the closest town. When Diane reached Minneapolis she stayed with her grandmother.
Convincing a friend to borrow her boyfriend’s car, Diane drove with her friend to Red Wing, but was unable to see Bob. On the return trip she lost control of the car and it rolled to the side of the road, injuring her. She ended up in the hospital in Minneapolis with pneumonia and a fractured skull.
Back in California at age 18, Diane met Tom, once more altering the course of her life.
- Minnesota’s Juvenile System
As Diane entered adolescence and was more uncontrollable than ever, her parent brought the family back to Minneapolis. Aged 13, hanging out with the “tough” kids, those who accepted a stranger without much fuss, Diane began smoking, wandering the streets with her new friends at night, and staying out late. She eventually came into contact with the law when she stole ten dollars from a small local store to buy shoes for a friend who needed them. Diane was put on probation, supervised by her parents. Failure was inevitable. Their failure to supervise her became her failure under the system that was in place. No one advocated for her in that court then, and the court chose to remove Diane from her parents’ care and place her in the care of the state. The institution that took her was the Home School for Girls in Sauk Centre, Minnesota. (Images courtesy of forgotten minnesota}
The Home School for Girls was founded as an Industrial school in the early twentieth century. The “cottage system” by which it was organized came about in the late nineteenth century as a progressive solution to earlier state mental hospitals.
Sauk Centre accepted girls from age 8 to 18, committed by court order for a crime. For stealing ten dollars and then violating her parole, Diane was incarcerated two years in Sauk Centre, an indeterminate sentence that depended on a parole board to decide when she could be released.
I believe Diane was sent to Sauk Centre because the judge felt she would have better care than her parents could provide. The judge probably was unacquainted with the reality of life in Sauk Centre for the girls there. Her experiences in Sauk Centre are thoroughly documented in the first chapter of Incorrigible, especially her intake process, itself traumatizing, her escape attempt, and her detention in solitary confinement for ten days.
In 2016 President Obama issued an executive order banning solitary confinement for all juvenile offenders in federal confinement. In international law, solitary confinement for juveniles has been banned and compared to torture. Nonetheless, several states continue the practice. In Diane’s case, its effects were both immediate and lifelong. Among other consequences she had phobias for her whole life, such as the inability to ride in elevators.
The measures Sauk Centre staff took to instill discipline in the girls under their care were commonly used in many states during that era. A 1974 made-for-TV movie called Born Innocent, starring Linda Blair, was based on the memoir of a former superintendent of an Oklahoma state school for girls, documenting the abuse suffered by girls in that state. Diane and I visited Sauk Centre in 1993 and spoke to the school’s superintendent. He said that the era when Diane was confined there was the “most repressive” time in its history. Some of the habits Diane learned while at the school lasted, like the trauma, all her life.
- Child Welfare
When the family and the schools all fail, the child welfare system comes into play. Diane’s mother was forced into a state hospital for tuberculosis patients in Southern California, and her sisters were taken to live with relatives. Diane was 11 years old.
By the time she reached 12 years old, Diane lived alone with her father, who spent working hours away from home and left her unsupervised. She got into trouble. First it was an incident where she had to care for a dog that her father wanted, but did not take care of himself, and while picking up after the dog, Diane ended up flipping some poop onto a neighbor’s garage wall. That earned her a black mark. Then a more serious episode occurred where she and a local boy spotted a neighbor’s raspberry bushes, ripe with fruit. As they picked and ate the fruit, they trampled the bushes. The neighbor spotted them and called the police this time.
Child welfare was called to investigate. They found that Diane was unsupervised and neglected, and she was put in foster care briefly. She was transferred to Julia Lathrop Cottages (as she remembered it—I cannot find any reference) while being evaluated, then transferred to Maclaren Hall in El Monte, California.
I can’t find information in her writings about how long she spent in those facilities, but while she was there, her education was disrupted once more. Diane never described her experiences during her time in foster care. She might have been very confused and upset, and just couldn’t remember. She may have been bullied, intimidated, or abused. MacLaren Hall closed in 2003 after a series of physical and sexual abuse of the residents came to light. Former Maclaren Hall residents told stories in their online group that accord with Diane’s own story of how she was treated at Sauk Centre.
In Diane’s childhood during the late 1940s and early 1950s, the school system was then (and still is) attuned to the needs and expectations of compliant, traditional families. Those on the margins of society had less success at conforming to the expectations of the school system, and their children suffered as a result. At the time when Diane attended grade school, those excluded from the mainstream, including minorities, had few advocates.
Diane’s problem with the school system was compounded by the rootlessness of her family as they moved frequently, often from one district or one state to another, and usually to areas that fell near the outer boundaries of the school district. Records transfer was on paper, sometimes carried by the parents, an unreliable method in her case. Diane often said that her mathematics education ended in fourth grade.
Her family began its odyssey from home to home and state to state then, as her parents moved for one reason or another after that. Her arithmetic suffered the most, since it takes step by step instruction, and even schools within a district could have small differences in the pace or method of teaching that interfered with her learning.
Diane liked to read, so reading saved her education from complete ruin. She learned story telling, a boon and a curse to her. To cover her family’s shame, Diane sometimes invented cover stories that she told to her teachers and classmates to make herself or her family more acceptable. Of course they found out.
Also in play was the social life of the children in each new class, each new school. They often were intolerant of strangers who didn’t know their habits and odd practices—everyone has them. Strangers who couldn’t quickly adapt were excluded. Diane didn’t learn the unwritten rules the other kids knew, so she fell in with other newcomers and misfits, other marginal kids. Those who were new like her, but came from more conventional households, learned the rules and moved into the mainstream. Diane was left behind.
There are instances, as we love to see in movies, where an empathetic teacher recognizes an exceptional child and intervenes to address that special quality, seeing that the child is not ignored or left behind. That didn’t happen to Diane. She felt written off. That continued as the family moved from one home to another, one town to another town, Minnesota to California and back again. New, marginal, and poor were her calling cards, and they didn’t earn her respect or notice as she showed up at each new school.
The school system was designed to reward successes for those who could earn it, conformity for those who didn’t succeed, and punishment for its failures. The institutions, especially in those days, didn’t adapt to the diverse needs of its population of students. That still happens now, and was even more pronounced in Diane’s day.
Diane was a sweet baby just like any other child, anywhere in the country, or in the world.
In time she grew into an adventurous, inquisitive girl who looked for new places, new experiences, and things that fell just outside the safe boundaries her parents set for her.
How did this happen, and what results did it bring?
In one incident, Diane found a Baptist church a few blocks from her house, not far, but beyond her limits. Her parents didn’t seem to know. As she told it, they either were unaware or indifferent. Diane loved the stories the teacher told, and the songs they sang. Somehow she managed to bring her younger sister Pat, who might have been four or five years old. The experience was hers and the other children were extras in her scene.
Diane felt such enthusiasm to attend this church no one else in her family even knew about, that sometimes she would walk to it well ahead of time and wait for Sunday school to open. She waited for hours, it seemed, although we don’t really know how long it took.
Where were her parents in that adventure? We don’t know. Did they know where Diane went, and did they approve? Was she scolded for wandering blocks away, aged seven or eight, with her five or six year old sister in tow? We never will know. I tend to think that they did not know where the church was, how far away, and who ran it. Even at that age, I don’t believe they supervised her properly or channeled her energy.
There were other indicators of their lack of parenting skill. The second chapter in the book tells the story of the gold star picnic Diane could not attend. She was excluded because her parents did not attend to her dental needs, and she felt bitterly disappointed.
Diane said she had toothaches from bad teeth, and took herself to the dentist. She said she instructed the dentist to extract the abscessed teeth and send her parents the bills. Somehow she could talk herself into the dentist’s office with no parent in sight and get the work done, even if it was not the best outcome. They never paid, either because they could not afford it, or mismanaged their money, or simply did not care. It’s even possible that the dentist wrote off the cost and didn’t bill her parents.
For the rest of her life Diane dealt with the legacy of that neglect. She had chronic low-grade infections from those bad teeth well into her sixties. Those infections contributed to her heart attack in 1999. When her upper teeth could not be saved, an oral surgeon removed all of them in 2004 and she wore a denture the rest of her life.
Diane was not alone. Dental care is usually not included in health insurance. Well-organized or prosperous families see to dental health because they know the consequences, while some families neglect it for lack of money, education, or both.
Diane’s mother Genevieve, like her mother before her, her uncles, and others, was infected with tuberculosis in an age when no antibiotics existed to treat it. Gen’s disaster came atop the burdens she already had, taking care of a family with few resources, three little girls to manage, and a husband who could not provide an adequate life. Gen came from a prosperous working class family in Minneapolis. Her father worked at the Pillsbury mill and earned extra income as a handyman for the Pillsbury family. He owned a home in South Minneapolis and property upstate. One of his sons by his first wife became a physician. However, after his first wife died the second wife was problematic. Attractive and artistically talented but lacking in everyday skills, Gen’s mother could not manage the family after her older husband died. Later she fell ill with active tuberculosis, and died in the hospital. The family fell apart, the property was lost to unpaid taxes, and Gen got pregnant with the child of a young man from a broken home and few prospects. When Diane was born, she lived with Gen in a home for unwed mothers until Charles finally agreed to marry her, a few months after Diane was born.
That was the family and the milieu where Diane was born and raised, and what set her on the path to foster care and a state home.
- The History Books Lied
This phenomenal analysis was written by Kate Sloan and delivered as a sermon at the Unitarian Universalist Church of Cherry Hill on July 4, 2021.
She posted it in her blog for those who were not present at the service.
- Accidental author
I am still absorbing the significance of that book. Eight-year-old me wanted to be a famous astronomer like Einstein. Everyone knew who he was. Not many people know who Joe Taylor is, and he’s about as famous as any other Nobel Prize winning astrophysicist. So maybe if I had gone down that road, I would have done something to win such an award, such honours, such acclaim. Or not.
Our crowded world of 10 billion people probably has a million people in it who are at least as smart as me, or smarter. They go about their lives with grace and dignity, some of them, or with ego and spleen, or drugs and alcohol, or some other distraction. The point is, the world consumes geniuses to fuel its intellectual capital production machine. We struggle, labour, and bear fruit in the form of new ideas: new ways for the burgeoning glut of human lives to go on expanding, redefining the limits to growth, pushing off the foretold collapse–another decade, another billion souls, another billion or trillion acres of agricultural production taken from the Earth’s dwindling stock of arable land to feed ever more mouths and again stave off collapse.
So I did my stint for the machine, walked away with my tidy little nest egg, and let fate decide what to do with the talent I cultivated accidentally through decades of inconsequential toil.
Fate handed me a story, and I wrote it, and there it is. I didn’t choose this capstone to my career. I didn’t say, “Someday I will be a writer and I will tell a story that brings smiles, tears, and sobs to readers, giving them a window into the hearts and minds of others whose lives they would never choose to live.”
That’s just how it turned out. Had I set out to do that, 45 or 50 years ago, right now I would be basking in the light of accomplishment, of satisfying my life’s ambition. But as the saying goes, “Life is what happens when you are busy making other plans.” So I am still absorbing it. Maybe I envisioned it back at UCLA when I started studying how to create stories. Let me think about that some more.
- Accomplishing the Mission
How do you know when a book is finished?
Honestly, I don’t know. Somehow it feels done. I know that from just having reached that awareness. Here’s a metaphor:
Starting in 1992, Diane began writing with a word processor, and gradually changed to a computer for her work over the next ten years. She continued her hand journals until she stopped writing altogether. Her most important autobiographical writing was on her computer. I saved all of it when her decline became clear.
The journals represent Diane’s body of work in a concrete form. They represent my pledge to fulfill her dream of publishing her story. She always believed she would do that herself. Eventually that dream vanished along with her memory, her personality, and her life itself.
Diane is gone, preceded by Jennifer, just a toddler when I met them, both brought down by disease, “and I only am escaped alone to tell thee.”
No deus ex machina can bring them back. No one will carry on with the dream unless I do. Transforming that shelf of handwritten journals to published work is my duty and my honor.
How many different ways to tell a story?
“What to leave in, what to leave out…”
Which one reaches people?
Who will want to read it?
Did I choose the right one?
As these thoughts tumbled around in my pre-dawn mind, they provoked in me an unexpected reaction: a feeling of certainty. I remembered why I wanted to write this story, and who I want to see it.
Every day more people disappear into the oblivion of dementia. My goal is to ensure that we remember them. That all of them are known as the brilliant individuals they once were and still are. As a former caregiver, I can say that affirming the humanity and identity of the person with dementia is critical to maintaining the caregiver’s own frame of mind, assuring that husbands, wives, parents, and other dearly loved relatives and friends are not forgotten like their fading memories. I want to keep the memories alive even when no one remains who lived them.
That was one of the main reasons why I chose to tell this story. New caregivers are my primary intended audience. I have learned this from my own experience in a support group for six years that the day-to-day details of dementia care are important to people who are just beginning to experience it. We start out blindfolded on an unmarked path in darkness. I want to extend a hand.
- Immortal Beloved
Last night I watched the movie Immortal Beloved, which I had not seen before, about the life of Beethoven. Beethoven’s music is the entire soundtrack. I haven’t listened to it for years. The music carried me away; it took me to a place I have not visited for years, of cataclysmic sadness, grief, and yearning. When I was a teenager, I used to listen to classical music because it helped me to understand my own emotions, which were otherwise difficult for me to reach.
Now I feel as if I just have recovered from a serious illness, and last night the fever broke. It has left me calm, but exhausted. The onset of the disease was somewhere around four years ago. During these years I was hypervigilant, worried about new symptoms of the disease, anxious lest an even worse onslaught might occur. Today I am recovering, grateful to have survived.
This pandemic has been the fever that brought our collective disease to its crisis point and marshaled our defenses to battle it. Like any recovering patient, we are weak yet, and we must take care to rebuild our health. A relapse is still possible.
- What was Our Journey About, Anyway?
Why did we go on that long trip? Were we running from our grief? That was part of our reason for going. Lately I started to understand the reasons better. Immediately after we returned, I wrote out the facts and events that happened along the way, but somehow it didn’t make sense. It seemed disconnected from the rest of the story about Diane’s life and mine, and her fate as dementia took over her life and ultimately owned her.
Because I wasn’t going deep enough. Because there really was a connection, as I made an effort to restore the links between past and present. I didn’t recognize that connection in the beginning. Only when I started to make the story coherent did I realize what that required of me. Every moment of that trip had a meaning tied to the rest of my life—my life with Diane, and Lauren’s life, and the life of our family going back generations. Now I am probing for the meaning. I feel confident about this new direction.
What was the story before, and what is it now? It was a four-part epic about a misguided girl gone straight—that was Diane’s early life. Then followed the long chronicle of our life together, powered by our mutual attraction and shared status as poorly-adjusted loners sticking together despite our missteps and misadventures. The featured segment, of Diane’s descent into dementia and the years I spent caring for her were followed by the loosely connected journey I made with Lauren to reestablish our life together.
After making many initial queries to agent and publishers I began to understand that the book was a difficult sell. It was too long, for starters. 120,000 words might work if I was a former highly-placed official with tales to tell about famous events and people. For a memoir, 80,000 words is about the limit. 60,000 is better. I rethought the concept, and realized I had material for two distinctly different books.
One book, driven by Diane’s laborious reconstruction of her tortuous history, would tell her story, from problem child in a dysfunctional family, through juvenile delinquency to ward of the state, to disastrous marriages and finally a stable marriage to me—a marriage with its problems, crises, moments of sheer joy and panic, like most marriages. Diane’s reflections on her life, and our time together, added perspective and deepened the reader’s understanding of what it was like to be us. The sheer excessive drama of her early life makes it a readable story, and I am confident it will stand on its own.
The other book, the one I am now revising, tells about how I cared for her as dementia overcame her, and how Lauren and I embarked on our journey to discover who we were after so much of our lives had changed. When I started writing about the journey, I was not clear about what it meant. Now I understand that it must integrate my thoughts and feelings during our travels with my own past and memories of our lives with Diane, plus our connections to the people and places we visited, as well as how that fits into our future lives. Every moment that passed on that journey had some connection to my history and that of my family. Every present moment is rooted in the past.
- Angels Run
Weak sunlight skimmed across the vacant four-lane Antelope Valley Freeway in the fading afternoon light. Every rock and pebble on the dry roadway cast a long shadow toward the northeast as the sun slipped into the red-brown smoggy haze above the mountains along the southwest horizon. No truck tires whined in the distance and no animals stirred in the chill air as we cruised along the deserted highway on Stan’s chopped rigid frame Harley. He downshifted as we approached an exit, slowed and turned onto a graded dirt road angling off from the highway. The rear wheel fishtailed, spraying gravel behind us, the bike accelerated along the byway, crested a hill, and we headed into the desert.
A few minutes later we pulled up to an abandoned house in the desert next to a group of Hell’s Angels who had been there since Friday. We dismounted—two dusty, cramped riders sore from our non-stop trip from the San Fernando Valley to this remote, dry Mojave Desert dust pile. Amid a scattering of motorcycles, sidecars, a couple of pickup trucks, some empty coolers, half-eaten food, empty beer cans and liquor bottles, cigarette butts, empty syringes, and trash, about fifteen Angels and other assorted outlaw bikers stood, sat, and laid about. They seemed to share a growing malaise, looking uncomfortably grimy, hungover, and increasingly restless after a weekend of partying at a dusty abandoned desert homestead north of Los Angeles. One of the non-Angels in the group greeted us.
“Hey, Stan! What brings you here, motherfucker?”
“Parti! What’s happenin’? You said to show up, Stan replied. Where’s all the dope?
“You’re way too late. It’s gone.”
“Who’s that?” Parti asked, nodding towards me.
“You know Ron, he’s the guy that takes pictures at the races.”
The previous summer I ran a freelance photography business taking and selling photos of amateur motorcycle racers at the track, including Parti, who was too bleary-eyed to recognize me.
The conversation ended. Buzzard, a skinny Angel with a thin scruffy beard, sat atop a weathered fence post with his heels hooked into a rail, a credible imitation of his namesake. Stan and I walked towards an abandoned house next to the party scene. One of the Angels, nicknamed Wolf Man because the beard growing up his face to the top of his cheeks, prowled around the house looking for something to kill the boredom of being sober.
Viewing the Hell’s Angels in repose, down and tired and bored, reminded me of a scene earlier in the year. Stan and I and some of his other biker buddies were hanging out at a beer bar in North Hollywood, playing pool inside the low, flat-roofed cinder block building. One of the pool players, not one of our group, got angry at losing. Maybe he thought he was cheated. I don’t remember. He threatened the guys who were playing against him, but they outnumbered him, and he left. A few minutes later, a car drove by outside, and as it passed the door, we heard gunshots directed at us. Everybody hit the floor. The car left and didn’t return. Very soon after that, we left too. To me that drive-by was a warning. To them it was entertainment. I felt repulsed by the casual attitude toward violence, but I was drifting aimlessly that summer, unsure of my own direction.
A creaking, wrenching sound came from a dry board that Wolf Man pried loose from a beam. The rusty nails that had held it in place for decades squealed and grated as Wolfman pulled it away from the frame of the building. He weighed the board in his hands, decided he liked its heft, and abruptly swung it at the wall, smashing the siding. Again. And again. The wall began to yield. Other Angels, aroused by the noise, stirred and began to pull loose boards and beams from the structure, ripping and pounding at it with bare hands and newly freed boards turned into bludgeons. In a few minutes, the roof of the house that had stood against desert sun, wind, and storms for untold years was sitting on the ground with a row of Hell’s Angels perched like crows along the roof ridge.
There wasn’t much else to do to the house… until one of the Angels produced a light, and touched it to the parched, splintered wood lying around the remains of the roof. In seconds, a fire roared and a pillar of smoke swept up into the still desert sky, a beacon for miles in any direction. The Angels scattered from their seats on the roof as the fire spread through the ruin.
In a few minutes, the smoke produced an effect. Fire truck lights could be seen twinkling faintly across the desert some twenty miles away, growing slowly larger and nearer as they responded to the smoke signal that the Angels sent up for the world to see. As the trucks approached, black and white squad cars became visible as well.
I told Stan, “Let’s go. We don’t need this.”
We jumped on Stan’s bike, started it up and roared away, back down the dirt road that brought us in. As we left, I saw the Angels leaning against their choppers, waiting for the law to arrive, perhaps hoping for a confrontation that might prove interesting. They watched the lights approach as we rolled into the distance.
Seeing the Hell’s Angels up close gave me a lot to think about. I felt grimy and tainted by just being there, but I couldn’t figure out why until after some time passed. Late one night in Sylmar just before Christmas, we dropped acid with Stan’s friends. LSD was legal when we used it in 1965, but possession of marijuana was a felony then, worth up to ten years in prison. Most of my friends in Berkeley, and all of Stan’s friends in Los Angeles smoked weed. We discovered when we tried it, that almost everything we’d been told about it by authorities was wrong. That tended to create a degree of alienation, to put it mildly.
The acid trip made me paranoid and anxious, with after-effects lasting for months. That, and my experiences with Hell’s Angels and other outlaws led me to a conclusion. After hanging around drug dealers, outlaw bikers, and semi-legitimate motorcycle riders and racers with Stan, I knew the Hell’s Angels were nothing but destructive. The way they dealt with people threatened the humanity of everyone around them. Casually demolishing an abandoned house in the desert didn’t endanger anyone directly. It didn’t destroy property or livelihoods that someone depended on. It was just their approach to life. They enjoyed destroying things. They were indifferent to the harm they caused. Any good they did was outweighed by the damage. They lived lives of exploitative sex, theft, violence, and intoxication to oblivion. It sickened me. Other people recognized that the minute they saw them, but it took me longer. I was still reformulating my own moral code after questioning everything. I finally understood that they opposed everything I valued, and I left their world.
The next summer, I sold my motorcycle and bought a used car.
- I can’t remain silent here.
Trump and his minions, his thuggish followers, and his mindless adherents stir up ugly thoughts when I see their mob actions in the news.
One part of me wants to turns away and ignore them, to act as if this was not happening, and to focus on calm, pleasant thoughts and ideas. People I know are doing that, exhausted by the uncertainty and their anxiety over the possible outcome.
But you know how I love metaphors. Imagine an old woman, a venerable, dignified matriarch with a long, distinguished life behind her, who all the while has suffered from a chronic infection–a purulent abscess that has festered unseen for her entire life. It consumes her vital energy, has driven her near to death in more than one crisis, her life saved by heroic efforts and untold sacrifices by those who loved her. Countless thousands even gave up their lives to save her from the ravages of her disease.
In spite of their valiant efforts, her infection persisted even to this moment, breaking out from time to time as she wrestled with the nature of her illness. Again it has erupted to the surface, spreading its repulsive, bloody pus on her skin, seemingly everywhere and unstoppable. Her loyal family has no choice but to fight this menace with every means at their disposal. They must fight with hearts and minds united in unbreakable determination to save the life of their honored ancestor and preserve her traditions for their heirs. If they fail, their future will be disastrous.
- Buried History
A simple tombstone shows the numbers of two lives.
Allen O. and Mary Lee Stockton were my mother’s grandparents. He died in 1933, and she died five years later, in 1938. Widows commonly outlived their husbands, then and now.
The story beneath the tombstone is far more intriguing. Their oldest son Martin died in 1903, just 30 years old. Late in her life, my Aunt Lela told what happened afterward. A neighbor with a grudge made repeated phone calls (they were prosperous farmers, and had a telephone) to my great-grandmother, pretending to be Martin. According to my aunt, it drove her mother mad. In 1908 she was admitted to the Nebraska State Hospital for the Insane in Lincoln, with manic-depressive illness, and spent the rest of her life there. My great-grandfather died 25 years later, at the opposite end of the state from his wife.
No one in my family ever talked about it. I found a census record listing my great-grandmother as a resident in the state hospital and pieced the story together from there. The effects of those events between 1903 and 1908 lasted long after the memory of them was lost to nearly everyone involved. My mother never met her grandmother. Her grandfather still lived on the farm where she was born and grew up, and she once told me how cruel the children in her town were to her, and how they teased her. She never said what they teased her about, but I can guess. Having a relative in the state mental hospital made her an easy target.
She didn’t talk about her childhood on the farm, in the town where she grew up and graduated from high school. She had five living brothers and sisters in her family, a brother who died before she was born, and one who lived only three days in 1936. They must have had interesting stories about their lives, but we never heard them. Silence buried the family history.
- Zoom zoom zoom…
Out of the rubble of daily life as we knew it, something new is emerging.
In my former life as a techie, I spent about twenty years off and on, working and managing technical writing projects online. Most of that time I was at AT&T, a place you’d expect to support remote work, given that it uses their products to function. That was true, except for a couple of unenlightened managers I knew. Our district manager Rick (the “P” was silent) was a former sales manager from Arizona, and he was against telecommuting. Too much abuse, he said. He would know. We didn’t get along, and I started to look around for a new job.
I happened to call Joe, an old boss, for a recommendation, and he asked if I’d be interested in a project he was staffing. It was a new product and service, called PersonaLink, based on technology from a Silicon Valley company, General Magic. Joe needed online documentation for the operations center that would run the service connecting the personal communication devices. I told him I would, and in a short time I said goodbye to Rick and began work on a new, secret development team. That whole project is another story. My point is that in 1993 I was working full time on product development with one day a week in the office and the rest of the time at home. I hired four or five writers and we began developing documentation for the service. I won’t go into detail about that. If you really want a deep dive, you can get it here.
Over the next few years I worked for a variety of tech companies, some onsite, some remote. I preferred remote. It was much more convenient for me, and I was adapted to it. Then in 2012, after 45 years working in high tech, I retired to take on a low tech job: caregiving for my wife with Alzheimer’s. I learned a lot about life, love, myself, and her in the process—some things I avoided when I was around computers most of the time.
The year is 2020. I was a member of an Alzheimer’s spouse support group then, the husbands and wives of people with dementia who met weekly to talk out their problems and frustrations, seek and offer advice. By then I was one to offer advice to newer members, and I saw that as my role. I was a widower for two years, learning to handle a new life, a new relationship, and then the hammer dropped: a pandemic. We all depended on those weekly meetings. For some of us, it was the only outlet from the endless duties of a caregiver. So we went online.
I delved into ways of setting up a weekly online meeting for the group, and came up with a Zoom account and a method. Remember, most people affected by dementia are not young. We’re old. A lot of us have never used a computer, and now we’re depending on it for a very important part of our life. I was happy to meet the need. The members who attend the ongoing meeting are starting to depend on it. We just had a discussion about what to do when conditions allow us to go back to face-to-face meetings, and everyone wanted to continue the online meeting. I suspect the same thing will happen to others once they realize the convenience of the online forum.
Not everyone has the same restrictions on their time as personal caregivers who spend every day, all day and night looking after a loved one. For them, as once it was for me, it is vital to be able to meet the need for social contact, sharing problems, and venting without having to hire or arrange for someone to cover while they go out. Sometimes it can be dicey, when the spouse walks in during a meeting and wants to know what’s happening. One or two members use headphones and type into the chat box so their conversation isn’t overheard. We adapt.
Ironically, between writing and zooming, some days I spend as much time on the computer now as I did when I was working full time, and my schedule is filling up with online weekly, monthly, and ad hoc meetings. That’s a dramatic change in a couple of months from being a semi-recluse taking care of my wife.
As I listen to the Adagio in D Minor from Mozart’s clarinet concerto, it moves me to tears. That hasn’t happened before. Before my life unraveled, listening to Mozart’s nearly perfect, smooth melody, I couldn’t imagine how the music could affect me more.
The family I once had is no more. My wife of fifty years, the daughter she brought with her to our union, both gone. My surviving daughter and I are profoundly changed by our loss. Recently I read that losing a child can cause traumatic grief, an enduring state. Psychologist Joanne Cacciatore found in her research that the person who experiences such a loss sometimes “undergoes a change in awareness from acute introspection to a sense of compassion initially for like others, and eventually for differing others, correspondingly engaging in ever-broadening spheres.”
Reflecting on that, I realized that my personal rebirth is incomplete. I sense that it still goes on, and I am still becoming who I was meant to be. It has taken a lifetime, and it likely will not be done before my life ends.
No one finishes. We live, grow—or we don’t—and then check out, our imperfections preserved, like prehistoric insects caught in amber, for all time—or that fragment of time when some memory endures of our momentary existence.
- The Chief Justice’s Nephew
I met Larry at the office, at Control Data where we both worked. I don’t remember the exact circumstances. Youthful, clean-cut, pin-striped, and moustached, Larry represented the very image of corporate marketing and sales—exactly where he worked at CDC, and somewhat the opposite of my bearded and shabby self. I do remember one of the first things he asked me, once we got past the initial pleasantries, was whether I could get him some pot. He clearly believed that my appearance gave him a clue as to my recreational drug preferences. One of the first things he told me about himself was that his uncle was then the Chief Justice of the United States Supreme Court. Nothing like starting off on the right foot…
In those days I rode the bus from South Minneapolis to my job in Plymouth, MN. Plymouth lay northwest of Minneapolis, and to get there I took a bus downtown at about 6 AM, waited about twenty minutes in the predawn freezing air, and boarded the bus that dropped me about half a mile from work. Larry offered me a ride home one evening (by five o’clock, night had long since fallen in the Northland). Invited to join us at the table, he charmed Diane, complimenting the macaroni and cheese and baked beans that made our meal. He really overdid it, but that was Larry’s standard mode. I still hadn’t managed to score any weed for him…
We had a party one evening for our friends, and I invited Larry and his wife to come. He accepted with pleasure. Our friends Bob and Judy, Ellen and Michael, and a few others that I can’t recall, as they figured less in the conversation that night.
We lived in the upstairs floor of a two-story duplex, at the top of a stairway from the entry door. After a few of our guests had arrived, Larry and his wife arrived, fashionably late. Larry’s wife, whose name escapes me, wore a light-brown wool coat, and had her blonde hair pulled back into a tight bun. Larry introduced me to his wife, and then as we climbed the stairs, quietly asked me, “Ron, what’s your wife’s name again?” I told him. At the top of the stairs he grabbed the doorknob, swung the door open, and burst out, “Diane! How are you?”
As the evening wore on, Larry engaged in conversation with Ellen, asking her what her husband did (I doubt if he expressed any interest in what SHE did). Michael was a resident at the hospital of the University of Minnesota. She said, “He’s in healthcare.”
“Oh, and what does he do?” Larry persisted.
“He’s a physician.”
Larry turned to Michael and asked, “How’s it going, Doc?” or something like that.
About an hour after Larry and his wife arrived, our friend Bill (Mad Dog) came on the scene. Mad Dog was a dope dealer. That is to say, he sold grass, weed, pot… That night, he showed up with a grocery bag full of stems and twigs from a kilo of pot he had been cleaning. He sported an Afro-style hairdo that hung out to his shoulders, a shaggy wool jacket, and dirty worn denims. Larry’s eyes went wide when Mad Dog walked in, wider still when he revealed the contents of his bag. Within moments, the Chief Justice’s nephew decided he needed to be elsewhere. Larry and his wife left very quickly—so quickly that she forgot to take her purse along. We found it the next day, and saw her name on checks in the checkbook inside. I returned it to him at work, and that was the last I ever saw of him.
- On Grief
A friend’s husband died early this morning from dementia. It’s not sudden or unexpected. In our adult years, the death of a friend, or an acquaintance, or a loved family member often comes out of nowhere. Dementia is slow death, giving you plenty of time to imagine how it will happen.
I’ve had both experiences. You recover from it, but it never goes away. Just yesterday a few of us had a long conversation about his condition. We knew he was dying, but not when. It came sooner than I expected. It wouldn’t have made any difference. I felt it as if my own wife had just died, too. That feeling will always be part of me.
My own grief enables me to understand deeply how my friend feels. I may not want to know grief, but it connects me to other people in a way that I couldn’t know without it. It’s a gift that comes with the price we pay by knowing grief.
No matter how good your words seem in that last draft of the evening, there’s always room for improvement in the cold light of day.
I learned many of my writing skills in an era when “cut and paste” required scissors and Scotch tape. Now, I make my edits with a pencil (and eraser) then transfer them to the computer.
I actually thought this draft was pretty good, but as soon as I looked at it I saw things that I could improve. That’s the way it works most times. You know you’re done when you can’t think of anything else to say better.
- The media
The news services still exist, all over the world, primarily dedicated to reporting on events, exposing corruption where it occurs (even in media organizations), and unmasking official falsehoods. They raise a voice against officialdom, when the official story runs away from the truth. They have the power to speak for people whose voices are ignored by the powerful.
But there are those whose interest lies in discrediting those reports, calling them “der lugenpresse” or “fake news.” The press will still be around next year, and in the years following.
- The game’s afoot.
This morning I sent out queries to ten literary agents. The clock is started.
- Against the Wind
… happens to be the title of a favorite song of mine by Bob Seger. Relevance? Well, this is the slack time after finishing the umpty-umpth draft of my book and starting to flog it to agents, et al.
So I read through Writer’s Market, books about agents, books by agents, blogs by agents, emails from consultants who want me to pay them to learn how to flog my book, etc. Before I know it, I’ll have the world crowding into my book release…
Then I start to think about the thousands of writers who bought Writer’s Market and carefully implemented its proven strategy for success, taking the advice of the many sages promising best-sellers by diligently following their six-point plan. Thousands… will their efforts propel them above the half-million rank in Amazon?
It stirs up the rebel in me, the urge to say “Stuff it!” and go my own way. I remind myself that Robert Persig was rejected by 126 publishers before one of them took a long shot and accepted Zen and the Art of Motorcycle Maintenance, still in print 46 years later. Why not?
Yesterday, a friend died of cancer in the afternoon. In the evening I started playing Mozart’s Requiem to reflect on it, and as I heard the Introitus something happened.
Most of my life I have been a firm skeptic, a rationalist, a nonbeliever in transcendental realities. I felt that and asserted it. In one moment, the music led me to understand that there are feelings, sensations, and experiences beyond our ability to capture them in words or any rational perception. They only can be felt. Until that moment, I was closed off to that feeling—blocking it. Among many changes that have come to me is this: now I feel it. For anyone who has had a similar experience this is no revelation. To me, it was.
I don’t believe this is an alternate reality, a parallel universe, or anything metaphysical. It is a state of mind, an emotional understanding. It is very real, but the reality lies within the person who lives it. It is the source of wonder, reverence, and awe.
Until very recently, I would describe myself as a non-spiritual person. That was inaccurate. In that moment I became aware of the essence of spirituality. My quest for this knowledge in the past didn’t bring me closer to experiencing it. Always, it eluded me. The energy I spent seeking it held me back, raising barriers between my awareness and what I sought.
No, I don’t suddenly believe in God, Krishna, or Allah, or that the son of a god was born on Earth to save us from our sins. Those belief systems are built upon this universal awareness which is intrinsic to human beings. It is part of us. We dress it up with fanciful ideas to satisfy our need for elaborate structures, but they are superfluous.
It is not a direct experience of the infinite. Our minds and our senses are completely finite. We can never experience infinity. We can only sense that there is something out there beyond our reckoning.
- Wanted: Readers
Everything is locked down, I don’t go anywhere to write about, nobody visits, and so on. Boring. True, but necessary, right?
What does that facilitate? Writing and editing. Been doing that. A lot.
Now, however, I’ve officially run out of writing and editing to do. It’s done. The book, a.k.a. Incorrigible, a.k.a. Mirror Lake, emerged from my final edit 14,000 words skinnier, focused, and flowing—at least I think so. What’s next?
In my usual haphazard fashion, I opened a spreadsheet full of the names and info on literary agents. Started to look at it, and think. Cart. Horse. What comes next?
Beta readers. Not agents. Hmmph.
Anyone interested please message me on Twitter @ronenfield or submit a comment here. Thanks in advance. I promise an interesting read.
A young friend of mine—not so young, really, he’s in his 50s by now—recently raised a question in one of his posts about the pandemic: “Consider the tragic fact that some, perhaps the larger percentage, of the Covid-19 deaths, took ZERO responsibility for their own health and well-being during their lives. There are always convenient reasons for not prioritizing your fitness. If a chronically unhealthy person dies because they were easier to kill, who is most responsible?” He went on to add, “My original post concerned personal responsibility and self-reliance. The strong individual controls what he/she can amid a countless number of uncontrollable factors. If a person is unhealthy by choice and this disease kills them, that person is most responsible.”
It’s the classic free will argument, the foundational belief of Libertarians and others, that what we get in life results entirely from our choices.
My grandmother had insulin-dependent diabetes. I watched her roll up her stocking and inject herself in her thigh. That took courage, I thought. Did she choose the hardships she endured during the Depression, watching her children suffer from lack of food? She was never obese. Did she choose the diabetes? She’d have been at extreme risk in this pandemic.
Another example was a buddy from childhood. He had diabetes by his 60s, a result of obesity, bad diet, unhealthy lifestyle, drugs, alcohol, prison food… you name it. He stroked out at age 64. If he had survived until this year, COVID-19 would surely have killed him. A perfect illustration of my younger friend’s point. Except… my buddy didn’t choose to grow up with an abusive mother that warped his decision-making abilities, or to be hit broadside by a delivery truck that ran a stop sign at 60 miles an hour and left him with traumatic brain injury. Those things led him down the path that eventually killed him. He had choices along the way, and made the wrong ones. He could have chosen differently, but the odds were against him.
I could find plenty of examples and statistics regarding health problems in the population. Nothing is as simple as he makes it. If I go for a run in a quiet suburb and happen to get shot by some nut, was my choice to go out responsible for my death? More to the point, if I choose to compensate for clinical depression by overeating and die from the resulting diabetes, did I choose that? I would say that it was an unforeseen consequence, not a choice.
Now I am in the final stage of editing the story of my life before I begin to submit it for publication. This process provides me with the material for extensive reflection on it, and the opportunity to find the truth in what I thought was happening, examined from a distant perspective.
It is the chance for a wiser person to say to my younger self, “No, what you thought was happening wasn’t what really happened, it was this.” I realized that If I never publish the story, if I discard it or shelve it, I would still be better for having written it. This insight came as I worked through a passage from eight years go, written when I had just begun caring for Diane full time. This is the passage I was editing:
Around that time, I posted to Facebook that I was changing my goal from satisfaction to happiness.
For many years, my goal was satisfaction. Satisfying my own wants and others’ expectations. At last, satisfaction wasn’t enough. I satisfied many of my life goals, but that alone didn’t bring happiness. I did many tasks fast and aggressively to satisfy wants or needs—like moving, shopping, and driving—and that actively interfered with happiness. It got things done. It satisfied my need to check off things on my list. But it induced a state of tension and stress that made relaxation nearly impossible. Striving to attain those things made their attainment unsatisfying, creating a paradox. Satisfying my desire didn’t satisfy myself.
I believe the movie “The Way” spoke to that issue. The central character is a man who is accustomed to achieving and satisfying his goals. But during his pilgrimage, undertaken spontaneously, he began to realize this about himself: that achieving things was not fulfilling him. At first he believed his son’s death was a senseless act of nature, but it acquired meaning through his transformation of his own awareness.
Now I see the parallel. Diane’s illness was likewise bad luck, a random combination of heredity and environmental factors, but it forced me to confront what was left of my life and to ask myself what was important. What brings happiness? What is happiness when goals like intellectual prowess and achievement become irrelevant?
- Living in Isolation
While I was caring for Diane, I spent six years gradually disconnecting from the world. More and more of our time passed inside the house, the daily life of a caregiver and his charge. As her life narrowed, so mine did also. At the end, she lived in one room, confined to a hospital bed, unaware of the world outside, unresponsive to her family and friends nearby. Then, she was finally free.
In the months after, I began rebuilding a life out of idolation. First Lauren and I held a memorial service for Diane. Contrary to her dismal prediction that no one but her daughters would show up for her funeral, about fifty people came: people she forgot she knew, who didn’t forget her; old friends from Philadelphia and Medford Lakes; her nieces from California and Illinois. Her sisters didn’t attend: Cheryl was incapacitated by dementia, and Pat couldn’t overcome her fear of flying. Jennifer had already gone ahead.
After the memorial, Lauren and I busied ourselves planning the trip we would take across the country to scatter Diane’s ashes at Mirror Lake. That journey is detailed elsewhere.
When we returned, I knew I wanted to write a book. I sat down and begin writing, finishing the first draft in December. By then I knew I needed to build a new life, reaching out to groups and people in the community to form new friendships and ties, and over the next year, I did. I found friends, and community, and love.
Then it all changed.
Over a month has passed since we began the lockdown. My daily life includes contact with Lauren and her husband Kevin, my dog Heidi, and three cats who allow us to share their house. We venture out carefully, wearing masks as the law requires now. By chance, we had two boxes of N95 masks on hand from years ago when a bird flu pandemic seemed possible.
I see Kathy once or twice a week, from a safe distance. We walk together, she on the pavement of her quiet street, me on the sidewalk with a grass strip between us. Now we see each other through our masks, darkly. We long for the day we shall see face to face.
- Love in the Time of Virulence
In December, no one outside of China or the CIA knew what was brewing. I ventured north to Bethlehem, Pennsylvania for a cross-country race. I made a wrong turn on the course and got disqualified. My reward for the trip was helping my club with logistics … and muddy shoes.
The next day I met someone who changed my life.
I spoke to a group about my experience, being alone after Diane died and reaching out for friendship, finding common bonds in that group and my running club. Afterward she approached me.
She introduced herself. Her name was Kathy. She said she’d be glad to have coffee if I wanted to talk to someone, and gave me her phone number. I called her that evening and arranged to meet for lunch later in the week.
That’s how I started seeing her. We spent New Year’s Eve together, the first time I’d gone anywhere for New Year’s since Diane got sick. After that I spent more and more time with her. We couldn’t get enough of one another. We were more like lovesick teenagers than seventy-something grandparents. She took me to meet her son and daughter and their families. Her small grandchildren were adorable. Everyone got along.
As Kathy and I traveled along a path of discovery together, the outside world began to intrude into our awareness. A disease grew to a pandemic and took over our lives. Her health concerns became central. Two doctors told her if she caught the virus she would die.
Our last day together, the governor locked down our state. A few days earlier we had split an order of groceries. When it was delivered the next day I brought her share to her front steps. I stood at a safe distance while she took them inside. We said goodbye and “I love you,” and I left.
We have long phone calls, sharing our days, talking about the places we’ll go and the things we’ll see together once this is over. Once it’s over. Whenever that is. Somehow we will survive, and never lose hope that we’ll meet again.
- Isolation and Travel
Traveling is an invigorating tonic. I’m fixing toast in the kitchen when suddenly, in my mind I am driving down a remote road in Michigan’s Upper Peninsula, as I did last fall. I see the trees rushing past, I hear the wind rocking my camper, and I feel as if I’m there.
The memories take me away from my isolation here. I’m transported to another time and place that seems almost real.
It can be disorienting. There were a few times while I was still regularly driving to see friends, when standing alone at home I wasn’t quite sure just where I was. I lost context. Which place was I in? That feeling would return at night, in bed in the dark, uncertain which room, which city, which state I was in.
Retired for years, not working or needing to leave my home, there should be no doubt exactly where I am at all times. Yet as my surroundings remain unchanged, my mind fights against it and carries me away to places far from here, places I once visited or wish I had, that seem in a way more real than the walls around me.
Did you ever stare motionlessly at something until its image starts to fade and you no longer can see it? It’s like that.
- Healing Voices (2 of 2)
He stared out the window at a black December sky, and watched rain swirl down onto roofs below, run in streams into choked gutters and spill over in sheets to the sidewalk below, backlit by the city lights, its shimmering reflections the only visual relief from dark night. How easy it would be, to give in to this gloom and let it control his feelings. Why struggle against the pain and disappointment?
“Talk to me,” she said, “You’re too quiet. I might as well be by myself.”
“What do you want to talk about?”
“Do I need to give you a subject? Just talk.”
That had the effect of making his mind go blank. He groped for memories of good times they had had together, something he could talk about without triggering one of her moods—anger or despair. Their life together lived on in those vivid memories …
Like the afternoon sunlight, flashing brightly from wavelets on a Minnesota lake, where they had sat one afternoon, years before, fishing for sunfish and crappies under the dock, without much luck. She pointed at a small fish darting out from the dock.
“Look at that! that fish isn’t big enough to hold the bait in his mouth,” she said.
“Who cares? I’m here to fish, not to catch fish.”
“What’s the point of fishing if you don’t want to catch anything?”
“I didn’t say that.”
“Yes, you did. You said you were not here to catch fish.”
“That’s not what I meant, I—“
“It’s what you said.”
“I meant the reason I am here is for the whole experience: holding the rod, baiting the hook, throwing the line out, reeling it in, getting sunburned, and soaking my toes in the water.”
“I don’t see any reason to do that if you don’t want to catch fish.”
“I never said I don’t want to catch—wait a minute.” At this, his rod tip began a jiggling dance, then dipped sharply. “I got one!”
The line sliced through the water towards the weeds on the other side of the dock, and he began to reel it in. The fish’s course brought it through the sun path on the water, chaotically scattering and blending the reflections. The fish flip-flopped as he lifted it from the lake, throwing droplets on their bare legs, that afternoon long ago…
His wife interrupted his thoughts again from her bed. “Where are you? Why don’t you say something?” She switched on the light above her bed, and he realized that he had not spoken a word about his memories.
“I was thinking about our vacation up north of Lake Vermilion, do you remember?”
“You mean the time we fished off the dock?”
“Yeah, that time.”
“What about it?”
He struggled to say what he really felt, “It was like we were so alive then, the sun was brighter and the sky was bluer than it ever is now.”
“It’s pitch black now.”
“I don’t mean right now, I mean when it’s daytime, and everything looks flat and washed out, compared to how it was then. And I miss you now, when we’re apart all the time. I keep thinking about the past, and wishing we were back there instead of here.”
“If you spent more time here, maybe you wouldn’t feel that way.”
She reached out and took his hand in both of hers. They sat, silently, for some time, until he realized that she had fallen asleep. Softly, slowly, he slipped his hand from hers and quietly walked out of the hospital.
- Healing Voices (1 of 2)
The New Jersey Theatre Alliance partners with several of its member theatres each year to produce Healing Voices: Caregivers’ Stories On Stage, a presentation of playwriting, poetry, and prose that portrays the experience of caregivers—people who devote their time, resources, energy, and love to care for others who suffer from debilitating illness. Often their experiences are not known or understood by outsiders without direct experience of the services they provide.
In the Healing Voices project, actors in each participating theatre bring the voices of caregivers to the stage, enabling audiences to reach a deeper understanding of what we go through as caregivers.
This year I submitted a short story I wrote based on my own experience, caring for my wife during her last six years as dementia overcame her and finally took her life. My story “Hands,” illustrates the interplay of memories and present life as a caregiver. My next post will include an excerpt from the story to show what I mean.
Today was two years, one month, and one day after Diane died. I was talking with a friend about it, and I had a complete meltdown as six years of grief and frustration poured out. I am grateful for the understanding and comfort of my friend who helped me deal with it. This kind of experience happens to a lot of caregivers, as well as anyone who goes through stressful life events. Support at those times is invaluable.
I shared this experience with the people in the Alzheimer’s Association caregiver support group I attend. Everyone there understood. They all have felt that stress and we talk about it every week. Some of them have gone through the same kind of collapse, and we help each other to get back up and go on. It doesn’t end when the one you cared for is gone. There’s a lot of emotional injury that needs to heal.
- Snow sport
How many adrenaline sports can a man in his seventies engage in? Tennis? I barely know which end of a racket to hold. Whitewater kayaking? Maybe, when it’s springtime. Paintball? Come on. Skydiving? Right. If I keep my helmet on and don’t fall out of the chairlift, at worst I might break a leg skiing. That beats a pancake landing from a skydive.
Downhill skiing is an environmental villain. It uses tons of energy, lots of water when they make snow, and thousands upon thousands of pounds of CO2 emitted by the folks who drive to ski areas. Why would I keep doing it? It’s my guilty pleasure. I’ll have to stop doing it, I know.
And yes, there are too many people living in war zones like Syria and Yemen who spend every waking moment at the edge of catastrophe, depending on their adrenaline just to stay alive. My selfish musings do nothing for them. What can I do to help them? How about working to change the foreign policy of our government to end their nightmare?
- Dreams of Summer
A long, long time ago it seems, I dimly remember gliding in my kayak across a mirror-smooth lake at sunset. I arrived in Michigan’s Upper Peninsula in mid-September, just as that northern land began its transition to Fall. That trip began in August, near the southern end of Michigan’s western shore. A friend had invited me to tag along on a ramble through the state, hopping from park to park in our RVs, stopping to dip a paddle in a lake here and there, and snapping photos of sights along the way.
Somewhere in Ohio I left the Interstate and my trip through the flat, featureless heartland changed character. Close to the land, traversing the small towns, rivers, and farms, I saw what the straight lanes of the four-lane obscured: many small sights that seldom reach the big city news but still make life interesting here, like a camelback bridge, or an abandoned church along an old state highway no one travels anymore.
My life got busy after that two-month jaunt, filled up with writing and other tasks, and memories of the road remained tucked away at the back of my mind, waiting for me to tire of the world and return to them. Because I undertook the journey without a clear plan or goal, finding a rationale for documenting it eludes me. I guess I’ll have to find one somewhere among the memories.
- I still have a dream
The words of Martin Luther King, in his famous speech on the steps of the Lincoln Memorial (listen here) ring out from the past to inspire us. We can’t let the antics of a petty and destructive would-be tyrant cloud our vision of the future.
As Abraham Lincoln said: “It is rather for us to be here dedicated to the great task remaining before us—that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion—that we here highly resolve that these dead shall not have died in vain—that this nation, under God, shall have a new birth of freedom—and that government of the people, by the people, for the people, shall not perish from the earth.”
We have work to do.
- Summer Vacation —1
I don’t usually jump into a road trip of unknown duration and a couple thousand miles with a woman I barely know. Well, never until last summer. Since my wife died, that’s how life has gone. Gradually, over a span of ten years, my old life dwindled and shrank, until its desiccated husk blew away, gone with the flesh and blood woman I loved and cared for while dementia slowly overcame her, whose ashes now sit on a shelf overlooking the dining room.
It was time for me to start over. This time, I vowed, will be different. Safe? Yes. Sane? Maybe not. Wait a minute. I’m in my seventies. Gotta be careful, don’t I? I was careful before. It’s gone. How much time is left? No one really knows, but the odds are, not many years.
So there I was, headed west on Interstate 80 in my 25-year-old camper van, with my dog Heidi curled up in the passenger seat beside me. Pennsylvania, Ohio. We spent the night in a rest area parked next to a couple of mammoth RVs, covering the windows to block out the lights, lulled to sleep by the unceasing whine of trucks along the Ohio Turnpike.
Somewhere around Cleveland we bailed out of the four-lane and turned west on an old U. S. highway past cornfields, small towns, and farms surrounded by empty fields stretching to the horizon. Mid-afternoon we stopped at the Rutherford B. Hayes Presidential Library and Museum in Fremont. In the warm sun a group of elderly Ohioans knocked croquet balls across a sprawling green next to the old Hayes family mansion. I skipped the museum, and after a few minutes of wandering to shoot photos, we drove on.
- Slow Dancing with a Stranger
I have just begun reading a book by Meryl Comer about her life caring for her husband, who had early-onset Alzheimer’s disease. It offers an intimate look at the process of discovery of the disease, its progress toward dementia, and the life of caregiving. It is heartbreaking and informative.
I have not finished it yet, but what I have read so far, about the course of events during onset, is a revealing look at the toll that the disease takes on the loved ones of the patient. Reading about the wife’s struggle to understand and adapt to her husband’s dementia is difficult for me. Her experiences were sometimes exactly like mine, and those of other caregivers in a support group I have attended for years. Reliving those memories is painful.
Slow Dancing With a Stranger: Lost and Found in the Age of Alzheimer’s
Meryl Comer, 2014, Harper One
- On Writing
Everyone says Stephen King’s book On Writing is the best book about writing there is. To be honest, I was a bit skeptical. Why? Because I don’t especially like his horror books. They are fantastic, far-fetched, and the characters are a little on the comic book side. That said, it’s typical for the genre. And he does a good job of working in that genre.
On Writing starts out as a memoir. I’m working my way through that now. I haven’t got to the end of his life story yet, but his writing is fantastic. He’s had me laughing, crying, and marvelling at his storytelling ability. Truly, he is a master of his craft.
I have a few tales to tell about my own coming of age, but that can wait until I manage to sell at least one book. Before then I’m told, no one really cares.
I can’t wait to read what he is going to say about how to write. I can certainly use that after I’ve spent decades polishing my skills at putting readers to sleep.
- Both Sides Now
I lived through the experiences with Diane, and saw my side of the story at the time, at least as much of it as I could accept.
But going back through her journals I realize I did not understand the whole story. Reading her words, I see her side. Revisiting those years, those events, and those traumas, I see them now from both sides. It is almost too much to comprehend. I can’t avoid knowing it to tell the story completely, but dwelling in the past is taking ots toll.
“For in much wisdom is much grief: and he that increaseth knowledge increaseth sorrow.“
- Too Disruptive?
Students swarm field at Harvard-Yale football game, chant ‘OK boomer’ in climate change protest
I have seen and heard this all before, in 1964 in Berkeley.
Let the unthinking establishmentarians bitch all they want about disruptive tactics, while I quote the most famous speech of the Free Speech Movement:
“There’s a time when the operation of the machine becomes so odious, makes you so sick at heart, that you can’t take part! You can’t even passively take part! And you’ve got to put your bodies upon the gears and upon the wheels … upon the levers, upon all the apparatus, and you’ve got to make it stop! And you’ve got to indicate to the people who run it, to the people who own it, that UNLESS YOU’RE FREE, THE MACHINE WILL BE PREVENTED FROM WORKING AT ALL!”
Mario Savio, December 1964, Berkeley, California
At one of the meetings of my Alzheimer’s spouse support group, I was talking about the book I am writing on my experiences caring for my wife Diane. One member leaned over to me and said “You’re a star.”
I don’t wholly agree. I’m no more of a star than anyone else in this group. We all know stories of people: sons, daughters, husbands or wives, who were faced with the responsibility that we have all accepted, and walked away from it for one reason or another. They couldn’t or wouldn’t accept that burden. We accepted it, we faced it, and we took it on. We are all stars.
- Why Us?
Why did we stay together in the face of conflict? No simple answer comes to mind. We both were loners, outsiders in most situations, and exceptionally intelligent. Once, Diane’s first love Bob told her years afterward, “You were too smart for me. We’d have ended up killing each other.” Diane’s life experience kept her from forming close friendships with some women who were her intellectual peers but had never faced the same hardships. My own life was not marked by struggles like hers so much as difficulty relating to people around me who couldn’t see the world as I saw it. When I went to Berkeley I was surrounded by brilliant students and faculty who were my peers. I saw the same qualities in Diane.
we found each other on the mountain, as if directed by fate, we felt
an affinity based on deep recognition of the singular
abilities in one another. The way we met, each one alone in the
the effect of
I responded to her emotion and her passion, she to my stability and
steadfast commitment. In spite of how we might
wander or fail, we both felt an overwhelming desire to be together.
One evening in the winter of ’69, at a country western bar in the Springs, crowded with people our age, we danced to a country band and popular songs. One was the recent hit by Judy Collins, “Someday Soon.” Whenever it plays now, it takes me back to that time in Colorado—twenty-three years old, young and crazy and full of eagerness for more life, more love, and more of the world with Diane beside me—and I feel her loss all over again, of the time, the years, and the woman I loved.
Alaska—remote, mystical wilderness—home to glaciers, caribou, brown bears, dogsleds, Inuit people… Diane and I both felt the magnetic pull of that place. In Seattle, we read descriptions of our city as the jumping-off point to the Alaska wilderness, and we felt we were almost there. One Fall morning, we watched a newly-launched crab boat depart the fisherman’s harbor from Seattle, headed for Alaskan waters, and we read in fascinated horror when that same boat was later found drifting in the Gulf of Alaska, covered in ice and abandoned by her crew, who were never found. Diane’s brother-in-law Ron spent several years mountaineering, climbing peaks in California, Washington, Ecuador, Mexico, and finally in Alaska on Denali, where he was trapped for days in a blizzard that wiped out several climbing expeditions who were there at the same time. We wanted to go to Alaska for many years, and finally set out to do it.
In 1996 we read about traveling the Inside Passage on the Alaska Ferry from Bellingham, Washington north to Juneau, Alaska. We decided to go the next summer. To book a stateroom on the ferry at that time, we had to contact them as soon as reservations opened for the year on January 1, because they sell out by the end of the month. The first week of January 1997, I called and reserved a room for four in the last week of July. A stateroom on the Alaska Ferry is a small room about eight or nine feet wide, with pale brown metal walls and two metal bunk beds along each side.
Our trip took us through the Inside Passage to Alaska, gliding past incredible scenery that beggars description in words: white-capped mountains that plunge steeply down thick forested slopes to the water’s edge, whales breaching a hundred yards off the side of the ferry, small icebergs with topaz blue facets drifting past, an island with eagles perched on almost every treetop. One gray morning before dawn we walked through a totem pole museum in Ketchikan, Alaska. The buildings were closed. So was the rest of the town, but the tour guide gave us a rundown on the history of the gift shop (open for souvenirs) where a whorehouse once thrived.
Juneau looked more like a logging company town than a state capital. We drank a beer in the Red Dog Saloon, crowded with patrons like the six-and-a-half foot tall Russian wearing a nickel-plated revolver on his hip. We rented a car and drove up to the foot of the Mendenhall Glacier, shrouded in mist on that overcast day. I sometimes look back at one photo I took of Jennifer there, where she stands framed by the fog and the glacier, peering absently into the distance as though contemplating a future beyond our knowledge. We turned in our car at the airport and boarded a flight to Anchorage.
In Anchorage we took a taxi to our hotel for an overnight stay before our train left in the morning for Denali National Park. The train passed whistle stops at highway crossings where the only man-made objects were the railroad, a highway, and a tiny coffee stand in a graded gravel parking lot, all surrounded by impenetrable forest. The train stopped once to pick up a passenger standing next to the track, with no station anywhere in view. Our route passed boreal forests, braided rivers, and mountains stretching to the horizon. We strained for a view of Denali to our west but it remained hidden by heavy clouds the whole time, except for one brief glimpse of a gleaming white peak in the sun that may have been Denali, or may not. The train cruised slowly alongside a crystal-clear river below us, where two-foot-long salmon slowly swam parallel to us. I chuckled at one woman who tried to snap a photo of the fish with her Instamatic.
At Denali Park we checked into our hotel, a no-frills row of one-story buildings near the Park headquarters. The curtains in our room failed to block out the light that kept us awake through the night. We were south of the Arctic Circle, but it never got dark at night. Jennifer, Lauren and I took a whitewater rafting trip, on a river filled with gray glacial runoff. Before embarking the guide gave us a detailed safety lecture. The advice boiled down to this: don’t fall out of the raft into the river. It’s cold. You’ll die. Diane declined to go. The park was swarming with tour buses and RVs, where a ranger taught us to identify the Great Gray Wandering American Geezer. I thought that was pretty funny. I didn’t expect to become one someday.
Why does this trip stand out in my memory?
Two reasons: the obvious one, that the sights and experiences were vivid and unforgettable, unlike anything we’d ever seen before or since. The second, more important reason: it was an interval in our lives where all of us were together, healthy, and fully cherishing each other’s company. We functioned as a family and we were happy being together. It stood out in contrast to other times and places when we were separated by distance or division. Our time in Alaska was one of those periods we all shared in the fullest enjoyment and appreciation of one another and the world around us. I used a lot of the photos I took then in the memorial service we held for Diane after she died. They captured us at our best.
In early August I left home in my Roadtrek with my little dog Heidi for a trip into unknown geography at Holland Michigan. I planned to meet a friend at the state park there. We’d travel north together in our RVs and end up at Copper Harbor on the coast of Lake Superior. Our loose itinerary would take us to any interesting spot between there and Holland. I did not know the end date, other than some time before winter set in.
In past trips I have scheduled out routes, stops along the way, places to stay and see… lending an illusion of certainty to venturing into the unknown. This time, all I knew was that at some date in the future I would return home. The rest remained undefined.
Adding to the uncertainty, Heidi was being treated for chronic lymphocytic leukemia, needed to have a blood test every four weeks, and still took medicine every day. I planned to keep in touch with her veterinarian by phone and email, and have the blood test done by a vet close to wherever we happened to be at that time. I never knew about the leukemia until last January, when she was tested for the first time in the three years she’s been with me (I adopted her from an old recluse on my block who died in 2015). As far as anyone knows she could have had the condition for years. During all this time she never gave any sign of being sick.
So there we were, rolling west on the Pennsylvania Turnpike, trying to get out of the state and off the turnpike as fast as possible. We made Ohio by sundown, and headed for a rest area on the Ohio Turnpike with an RV lot.
- On the Road in Michigan
Heading south from Copper Harbor, Michigan, I stopped in hazy afternoon sunlight in a small town near Ironwood. I walked Heidi, as I do whenever I stop, then moseyed over to a one-calendar hole-in-the-wall bakery and coffee shop (William Least Heat Moon in Blue Highways invented the calendar rating system for small town cafes), where I purchased a cup of watery Midwestern coffee and a doughy Danish, and consumed them under the watchful eyes of a couple of wiry local elders, probably with names like Earl and Vern.
- Wild Willys
Folks flock to the free hot springs south of Mammoth Lakes for a dip in the natural hot spring and a stunning 360 degree view of the Sierras to the west and White Mountains to the east. In the background, Lauren Mountain above Convict Lake.
I’m going to reach back into the past here, to provide some context. Now, bear in mind I was born in Washington state, and grew up in California. That’s as West as it gets, not counting Hawaii and Alaska. But I didn’t strongly identify with the West after moving to New Jersey, although I did miss the mountains and the wide-open skies.
When we went to Albuquerque for my parents 50th wedding anniversary, I bought a cowboy hat. I also bought a sterling silver and turquoise belt buckle. Those were my Western cultural artifacts. But my Western identity remained dormant.
A couple of years ago, browsing through bins at the Goodwill store, I came across a genuine Resistol cowboy hat and tried it on. It fit. That started up the process. Before long, Lauren was finding Western shirts for me, and next thing I knew I had an outfit.
But I lacked a pair of boots. Definitely not Western enough. So I bit the bullet and bought a perfectly useless pair of cowboy boots. My inner eight year old was tickled. My feet complained that they didn’t fit. Got them stretched. Still didn’t fit. Into the closet the boots went, where they sat and gathered dust for over a year.
Lately I decided to try breaking the boots in, wearing them without socks for a looser fit. That was ok. Days passed. My feet and the boots started getting used to each other. I added thin socks. Still ok. In fact, better.
I’ll admit these boots aren’t made for walking (sorry, Nancy), but I have another pair of expensive, hardly used boots for that purpose. So there it is.
I have deliberately stayed away from my latest draft, letting life percolate through my awareness. A few people have given me cogent comments about it, and I have digested them in preparation for the next rewrite.
Today I begin. The first step is to go through every paragraph, tagging each one according to what event it is associated with. Some call this “chunking.”
That will help me create a topic outline, ordered in a way that flows as a story. I am continuing to read well-crafted fiction in an effort to sharpen my story sense. The manuscript I have now is more of a catalog of our lives than a story about them.
Some writers may prefer to keep their process a secret; I worked in collaborative groups for too many years to do that. Everyone sees the final product, so why be bashful about how it’s made?
I’ve been reading a series of books by Craig Johnson called the Walt Longmire mysteries. It’s part of my process for approaching the next big revision of my manuscript. Johnson is an excellent writer, a compelling story teller, and very successful as a result. A friend tipped me off about the books, and since I already was a fan through the TV series on Netflix, it didn’t take a big push to get me started.
Now I’m hooked.
Point is, I’m soaking up Johnson’s storycrafting techniques as I read his books. I’ve not read much fiction the last few years, and the books I’ve written would bore the balls off a brass monkey. So a deep dive into good stories will help me find a voice worth listening to.
One of his short stories, “Slick Tongued Devil,” relates his encounter with a con man Bible salesman, and his memory of the events around his wife’s death. I felt sad reading it. Reading about any death touches me deeply since my wife and older daughter died.
I wasn’t like this before. I maintained an aloof detachment from the emotional world most people live in. I’ll never be that detached again, and I’m glad. Life is more vivid, more real, more alive when you know death is always just an arm’s length away.
- How many…
Because we don’t know when we will die
We get to thinking of life as an inexhaustible well.
Yet, everything happens only a certain number of times and a very small number really…
How many more times will you remember a certain afternoon of your childhood that’s so deeply a part of your being that you can’t even conceive of your life without it…
Perhaps four or five times more
Perhaps, not even that.
How many more times will you watch the full moon rise…
And yet it all seems limitless.
~ From The Sheltering Sky by Paul Bowles
- The first three states are the hardest
Traveling west through Pennsylvania ranks low on my list of favorites. Three hundred plus miles of PA Turnpike or Interstate 80 gets you across the Ohio border, rattled by potholes, hundreds of passing tractor-trailers, narrow defiles created by construction projects, and various other obstacles. Having endured this gauntlet several times, each new iteration finds me less eager to face it. Yet I did not see any reasonable alternative. So I grit my teeth, fasten my hands on the steering wheel, and proceed: west out of Philadelphia beyond Valley Forge until the first rural scenery relieves the grungy landscape of deteriorating factories, sad boring semi-urban bedroom communities, prosperous and boring suburbs, and newly designed exurban communities sporting their walking and cycling trails, designed retail spaces, and other inducements for those with the wherewithal to enjoy life more (in the time not spent commuting). Do I sound disenchanted? I’ve been in the East too long.
Late in the evening, after traversing the entire length of the Pennsylvania Turnpike, I pull into a rest area on the Ohio Turnpike boasting an RV area with electrical hookups for the bargain price of twenty dollars a night. Be clear: it’s a parking lot with plugins, but electricity makes life better if you’re in an RV. Also, it guarantees you won’t be hassled in the middle of the night to enforce some “no overnight parking” rule that most rest areas keep on the books but rarely follow.
A restful night follows, if you don’t mind passing diesels every few minutes, bright lights in the windows, and the background rumble of the passing traffic on the turnpike. Years ago I added black panels to my curtains to block light from seeping out when trying to camp unobtrusively (“boondocking” it’s called) in areas where maybe no one wants you to camp. I’ve not done that much, but the blackout curtains have been very useful for camping in areas with bright lights that interfere with sleep. Insulated foil panels made from Reflectix cover the front windows to completely seal out outside light. I cut them to fit each window and hold them in place with Velcro. In the morning I roll them up and slide them behind the driver’s seat out of the way.
About mid-morning I reached my limit with Interstate 80, and searched for alternatives. One of my forays into the geography of the area on the Google Maps app revealed a landmark I never, ever considered as a destination: the Rutherford B. Hayes Presidential Library at the Hayes family compound in Fremont, Ohio, a few miles south of the Interstate. A slanting course away from I-80 would take me away from the teeming highway onto quiet byways. Getting away from the Interstate was the goal. Visiting the Rutherford B. Hayes Presidential Library was my means of doing it.
Being intent as I was on getting to Michigan, I had no intention of visiting the museum, but found the library and museum building substantial and impressive.
Like most U. S. presidents, Hayes enjoyed a privileged life before taking the office, and more so afterwards, as the family home suggests.
While I was there, a few visitors passed the warm afternoon in a game of croquet, a timeless scene marred slightly by the anachronistic presence of aluminum and plastic lawn chairs.
After snapping a few photos, I returned to the camper and we rolled West.
- A New Journey
More than a year has passed since I returned home from the trip to scatter Diane’s ashes at Mirror Lake, then began writing the story of our life together. That trip defined the end of my former life. I have begun a new journey. This time I share the camper only with Heidi. Plato is gone, relieved from his awful pain from a suffocating illness. I miss him, but Heidi keeps me company. She has her own health problem, chronic lymphocytic leukemia. Someday it may take her life, or maybe she will live a normal life span. It is hard to predict, since we don’t know when her disease began. For now, she is here, I love her and she loves me. That’s all we need.
Heidi and I will travel west to meet a friend in Michigan, then meander together north along the coast of Lake Michigan, experiencing new terrain, new sights, and a new friendship—a radical departure from the life I lived for the last six years, increasingly isolated and weighted down by responsibility and an intolerable future.
A year and a half has passed since Diane died from advanced dementia. In that time I have done little to change my home from what it was while she lived. I don’t know how this trip may change that; I don’t even know how long it will last. I am making a leap of faith into unknown possibilities, hoping that it will bring me into a new relationship with my life. Bear with me and see how it unfolds.
- Will cancer haunt you forever?
Jennifer Palmer Enfield, ca. 1995
Like the ghosts in the closet or the ghouls under the bed at night in the dark during your childhood. Ever still wonder if you shouldn’t look just to make sure?
You will feel for a long time that cancer is ever presently luring.
After an extended remission, you’ll call yourself cured. Then, even then, on certain days, in some moments, just when you feel for certain that having cancer was only a bad dream will you be reminded of its horror. “The horror, the horror.” Like any memory, in time, the memory of having cancer will grow dimmer. Less real.
There is life after cancer, just as there is life during the “having of cancer.” And yes, it is somewhat different than your life might have been had you not been sick.
When I was diagnosed with Hodgkin’s at age 17, my mother told me that . . . “For each of us, life presents a hat filled with slips of paper. On each piece of paper are written experiences. You get to reach into the hat and pick a handful of experiences. You don’t know what you are going to get before hand. You don’t know ahead of time how you will react. And your experiences will be unique to you. In each handful of experiences will be good ones and difficult ones. But they will be yours alone.” In my hand was a happy childhood, loving parents, intelligence, good looks, and many other wondrous experiences. And cancer. “You have cancer.” My mother told me. This was how she told me. And she continued, “Other people will get their handfuls of experiences and in them will find death in an auto accident, murder, rape, incest, loss of a child, cerebral palsy, a child with downs syndrome, living through war (Holocaust or Bosnia), a life torn apart by divorce, loss of limbs or sight, etc., etc. Now knowing that you have cancer would you trade you affliction for theirs? The bottom line is that every one gets something.” And now that I know that I can survive and handle cancer, would I trade it for something else?
And my father, he likes to remind me of the following, “Each of us would like a life with out bad times, without difficult times. Enjoy and make the most of the good times. As you can be sure the bad times most certainly will come.”
Maintaining your positive attitude will help. But as I have learned in the past 14 years (and am still learning), there will be grey days.
Will you ever feel “totally normal” again? I suppose that depends on your definition. Is it normal to have catastrophic experiences in one’s lifetime? It certainly seems to since every day we hear of devastating natural and man-made disasters that affect other people’s lives. Facing up to the fact that catastrophic events happen to everyone and not just to the fact that catastrophic event happen to everyone and not just to “other people” and that this includes yourself will make it easier to feel normal. The “norm” is that shit happens. Maybe before you weren’t normal. Now you are. Welcome to an exclusive club!
I think that is part of what is difficult about all tis. The other part and I suspect that what you are really asking . . . and what no one really wants to address here on this message board (or anywhere else, for that matter) is the eventuality of your own death. And living with that fear.
Yes. You will die. Someday. Yeah, yeah, you guessed, “we all die someday.”
Is it ever easy to face the imminence of one’s own death? Is it harder to face at 17 or 26 than at 70 or 80? Is it less frightening to think about dying if you have lived enough years to qualify as having lived out a natural life span? Well, perhaps you don’t feel as cheated.
If what you (and all of us) really want to know is will you be afraid of your own death forever?
But most days you will be more concerned with paying the rent, your love life, the car, and your plans for next Saturday night.
I’m 31 now. 14 years ago I had cancer (Hodgkin’s). I am healthy today. And on most days I don’t think about my Hodgkin’s. Most of the time I feel normal. But I have battle scars, physical and emotional. And I now know that this is normal.
I try to live my life as well as I can. I try to remember that life is fleeting.
The difference between my life and someone who has not faced their own death and attempted to come to terms with it is this: That I know more fully that my life will end eventually and thus I live accordingly, fully and with quality. And they (other) often do not.
You might wonder why we stayed together in the face of such conflict and infidelity. No simple answer comes to mind. We both were loners, outsiders in most situations, and extremely intelligent. Diane’s life experience set her apart from those who had never faced so much difficulty. My own life was marked not by struggle so much as an inability to relate to my childhood friends who couldn’t see things the way I saw them. At Berkeley I joined a community of students and faculty who were truly my peers, and I recognized the same quality in Diane. When we found each other on the mountain, as if directed by fate, we felt an affinity based on a deep recognition of the unique abilities in one another. The way we met, each one alone in the wilderness, emphasized that. I responded to her emotion and her passion, she to my stability and steadfast commitment. In spite of how we might wander or fail, we both felt an overwhelming desire to be together.
~ from Incorrigible the book
- I Never Listen to Podcasts
Mike Allen, at online news site Axios, posts about “peak podcasts.” Remember peak oil? He quotes Jennifer Miller in a New York Times article about the number of podcasts and how quickly they fade. The “frequency with which podcasts start (and then end, or ‘podfade,’ as it’s coming to be known in the trade) has produced a degree of cultural exhaustion.”
I never listen to podcasts myself. I watch videos rarely. I read much faster than people talk, and I tend to skim over the dull parts. Hard to do with audio and video recordings.
My little dog Plato died today. He was twelve and a half years old, and lived with us since he was a puppy. Tracheal collapse it made it difficult for him to breathe. He was outside in the heat today and the heat was too much. I will miss him.
He traveled with me and my daughter throughout our odyssey last year to California, where we scattered my wife and daughter’s ashes at Mirror Lake.
Romp on, Plato.
- Neil Armstrong’s Spacesuit
I just heard a story on NPR about the space suit that Neil Armstrong wore on the moon. Never intended to last more than 6 months, the suit has lasted 50 years, although it has deteriorated. After some restoration, it is now back on the exhibit at the National Air and Space Museum. I want to visit it there, and see it for myself, in person. It represents a pinnacle of human achievement, one we may never attain again, or perhaps we may surpass.
- Final Edit
I finished the markup of draft seven. Draft eight begins.
- Signs of dementia for family members to notice – The Washington Post
A brief discussion of behaviors that may indicate dementia, including fronto-temporal dementia and Alzheimer’s dementia.
- Rebuilding my Life
Spend fifty years in close quarters with another person, sleeping together by night, cooperating, conflicting, cajoling, shouting, listening, working, and playing together by day, then one day they’re gone.
My whole life was built around Diane and us and our two daughters. It all collapsed. Sixty-five years of cigarette smoke and other excesses blew her away, slowly, over two decades. When her life ended, she was released from all pain and anxiety, things she could still feel even when dementia obliterated most of her other awareness. Cancer took our oldest daughter without Diane ever knowing it.
I was released from my old life, now in ruins, needing urgently to build my life all over again. I had some help from our younger daughter, bright spirit and gadfly, our hope and concern since childhood, now my only connection to the life that was.
Surrounded by material objects and memories of the past, I was slow to see beyond them into a possible future of my own design. Before that could happen, I finally realized that to live a new life rather than continue living the old one I must change mentally and emotionally — a kind of rebirth.
Help came to me from a direction I never would have expected in the old life. I am not religious. I avoid dogma, don’t believe in supernatural forces, and I don’t understand what people mean when they talk about spirituality. Having said that, I came to understand that for my next stage of life, I needed to reach out and connect to other people.
Caring for someone with a disabling illness isolates you from the rest of society. Reconnecting is vital. I found a community of like-minded people in the nearby Unitarian Universalist Church. Beyond holding shared values, they were open, accepting, welcoming, and loving. It is exactly what I needed to begin rebuilding my life.
As they accepted me into their community, and I slowly accepted being a part of it, I began to feel a regrowth of my emotions, freed from the numbing restraint I adopted while caring for my dying love. When the little children run past in the aisle, I feel a pang from the loss of my daughter, once a child like them, but I also love their sweetness and joy. A door that was closed has reopened.
- Another day, another edit
At the start of this week I began yet another edit of the book to tighten up the story line, expunge more than a few awkward phrases, and generally improve a reader’s experience. This time, I printed the whole draft so I could work with a pen and paper. Nothing clarifies errors like seeing them on paper.
I haven’t finished this edit, but I’m two-thirds of the way through. I just finished editing the section covering the six years I spent caring for Diane until the end of her life. Reliving that experience is painful every time I revisit it, but I want her story to live in the minds and hearts of people who never met her, to see her as I did.
- Hazy, hot, humid
August weather is typically hazy, hot, and humid in New Jersey. Thanks to global warming, we get it in July now. It makes running difficult, if not impossible. I thought by getting out earlier, with the temperature in the 70s, I could beat the heat. But I couldn’t beat the humidity. In a 6-mile run today, I dropped five pounds. I will get it back, as soon as I rehydrate.
The arc of the moral universe bends toward Justice when we refuse to stop pushing it in the right direction.
- I Believe — Nike ad
I had to share this. For my wife who won’t live to see her writing published; for my daughter who fought to expand the number of women directors beyond 3 percent; for everyone who struggles to achieve a dream.
- Steadfast and True
Each week I attend an Alzheimer’s support group, along with about fifteen other spouses of husbands and wives with dementia. Many of us share the same stories. As new people come into the group, they ask the same questions we once asked, seeking advice and hope.
We all learn eventually that the best we can hope for is to take good care of our loved ones. The end is the same for everyone. There is no cure.
Looking around this group at one meeting, it struck me that they are steadfast men and women, standing by their vows to the end, sometimes with help from their families, sometimes in spite of them.
We learn to help our mates rise, bathe, dress, groom, eat, and move about. Those are the “activities of daily living.” Some people with dementia require assistance for all of them, some don’t. We learn to do things we never thought we would be doing, or wanted to. But we do it out of love. We do it because they need it. We try to make their lives as pleasant and comfortable as possible, even if there is no hope of improvement.
When I hear some of the members of the support group tell how they help their spouses, playing games with them, finding ways to keep them entertained, finding ways to make their days pass pleasantly, I have to admit I wasn’t as good at it as they are. Some of the things I learned from them came too late, after my wife was already gone. I still attend the support group, hoping that I can share an experience to help someone else who needs to know it.
- Fourth of July
Fifty-five years ago on this day, Diane went into labor, at a Fourth of July picnic. She was driven to Alhambra Hospital, and after a long labor gave birth to Jennifer Jay Palmer the following morning. Jennifer’s official birthday was July 5th, but we often started celebrating on the Fourth of July.
- Not Today…
Hot, humid weather greeted me this morning. I did not feel like running. But if I skip today, will I run tomorrow? And if I don’t run tomorrow then when? So I ran. Two and a half miles, up hills and across intervals. Came back covered in sweat. But satisfied.
- “Madam Secretary – Secretaries of State” on YouTube
This scene blew me away. A television show reaches into the real world with a message.
- Ultimate Zen
–Where are we?
–No, where are we?
–New Jersey. It’s winter.
–We might as well be in Minneapolis.
This snippet of conversation took place almost daily. Living with no memory is the ultimate Zen. Diane was almost always in the present moment, for she had little recollection of anything else. If I reminded her of things in her past, sometimes she recalled them, sometimes not. The details were almost never remembered—just the hazy outline.
Diane would respond if I talked to her, but seldom initiated conversation unless she was worried about something. If the weather was bad, she would ask if the girls (Jennifer and Lauren) were at home, where they were working, and whether they got home safely. Usually she would ask the same question several times, until she felt calm enough to leave it alone.
I married Diane on June 29, 1968, 51 years ago. We spent more than 50 years together, but didn’t quite make it to our 50th wedding anniversary. Her mother and my mother collaborated to make her wedding dress, shown in this old photo.
- Door to Door
I passed an old man in his 80s or even his 90s, walking along the sidewalk in my neighborhood. He was dressed in tan slacks, a yellow dress shirt, and a tie.
Over his shoulder he carried a small bag; maybe it contained Bibles, or samples, or goods to sell. In a split-second my mind constructed the story of an old door to door salesman, on his last legs, shoulders slumped, trudging along the sidewalk looking for his last sale.
- Buttons, buttons
A friend posted a picture on Facebook that showed a whole bunch of political buttons hanging on the wall. It reminded me that my daughter Jennifer collected them also and she put them into a display, shown here.
- Hello, World!
When I was learning to program computers, way, way back when things were very different, your very first program was called Hello World. If you succeeded, that phrase would display on whatever device you were using for your output: CRT, teletype, console, whatever. If I’m successful this time, Facebook, Twitter, and LinkedIn should all light up.
- Dash to Home
Once we cleared Pine Ridge, we wanted to go home by the shortest route. A planned route through Minnesota and Wisconsin to see old friends was scrapped. We did not want another breakdown on the road.
We took a quick side trip into Mitchell, South Dakota to pick up some cash at a credit union ATM, and while we were there, to stop at the Corn Palace, another stop on Mike and Jennifer’s route.
Next to the Corn Palace was a strange little place, a biblical museum of sorts, full of odd home-made exhibits by a local eccentric with limited knowledge of real history.
Among the oddities was a frontiersman’s horse, saddled and hung with a rifle—boasting an anachronistic banana clip.
After that last tourist attraction, nothing could deter us from home. We passed through Minnesota, Wisconsin, Illinois, Indiana, and Michigan into Ohio. We made a side trip there to stop at the farm where my great great grandfather was born, to give Lauren more connection to her roots.
The Peter Infield farm near Millersburg, OH. Now owned by an Amish family. Many of the buildings shown on an 1860 map are in this photo.
The original deed was signed by President Martin Van Buren.
My great-great grandmother’s grave.
Ohio, West Virginia, and Pennsylvania passed in a blur of turnpike miles, and voila! our trip ended.
- Pine Ridge
I took few photos during our stay at Pine Ridge. I mostly spent the time observing and listening, because I did not want to impose my preconceptions on the experience in a way that would have interfered with understanding what I saw and heard. The act of composing a photograph requires forming an idea of what is seen, and choosing a point of view on it, as well as separating oneself from the surroundings so as to select the subject and background. I opted to remain in the experience and not to be a witness to it. In time, I will know better how to express my views on it, but for now I will let it rest.
Lauren was the instigator for our side trip into the Oglala Lakota Reservation to meet activist Christinia Eala. She wrote:
“Several years ago I met Christinia Eala through a mutual friend, here on Facebook. We hit it off immediately. Christinia is a Lakota elder in her 70’s, who has been an activist for much of her adult life. From the onset, she asked me to come volunteer to work with her organization in building sustainable earth dome housing in the Pine Ridge Reservation in South Dakota.
“Pine Ridge is an Oglala Lakota Native American reservation , and is the poorest community in the USA, and… sits adjacent to Rosebud and Standing Rock. I was unable at that time, due to illness in my family. Much later, there was talk of my joining Christinia’s camp of water protectors at Standing Rock, and while Christina was present for the run of the occupation there, I was again unable to go as my sister was to be hospitalized, and then passed.
“So when my father and I began planning this epic road trip, I made sure we built in days to visit with Christinia, and to do some service for the struggling indigenous communities in this area.
“I simply cannot wait to finally meet this amazing woman, and to get my hands dirty in an effort to provide what help I can to first nations families who live in abhorrent conditions in a nation which has done everything it could to break them, but who continue to survive and thrive, thanks to elders like Christinia who work tirelessly to teach the children their traditions, language and the custom of giving to and providing for community as paramount to all things.
“We will be working on the reservation for a number of days, but may have exceedingly limited access to wifi and cell service. I promise to take photos when able, and post when we depart.”
Christinia showed us around the facilities they would be using for the Convergence event later in the summer. The organization that Christinia founded, the Tiyospaye Winyan Maka (Lakota words that translate to “Extended Family of Women of the Earth”), a non-profit organization empowering women to provide sustenance, healing and opportunity for their children and grandchildren, has partnered with Colorado State University and the Oglala Lakota Cultural & Economic Revitalization Initiative in a project to promote sustainable housing, renewable energy, and nutritional and educational sovereignty for indigenous families. She is working with a local chapter of Engineers Without Borders from CSU.
After meeting Christinia and seeing the facilities she has guided to reality on the remote ranch on the reservation, we drove east along with Christinia, who was taking her car for repairs at her nephew’s house on the Rosebud Indian reservation that adjoins Pine Ridge. We stopped in Pine Ridge, where Christinia met a friend and activist to discuss his campaign to reform tribal politics. After that, we drove to visit Christinia’s friend in Pine Ridge, who lived a well-kept house with a fenced yard in town. Her home was neat and well-tended (normal for almost any town we’d passed through outside the reservation). She showed us a photograph of her ancestor Black Elk, a great heyoka of the Lakota. After visiting for half an hour or so we said goodbyes and departed for the next leg of our trip, to Christinia’s nephew in Rosebud. She had mentioned going there casually as though it was not much of a drive.
We learned about the meaning of distance on the reservation. About a hundred miles later we arrived in mid-afternoon at her nephew’s mobile home on the Rosebud reservation. The home was filled with overstuffed chairs and mementos. They offered us tea and we talked. Christinia’s nephew was a country western singer and sang for us, accompanying himself on his guitar. After a pleasant visit Lauren and I excused ourselves, saying we needed to get on the road. I knew if we stayed longer they would have wanted to invite us to eat dinner with them and breakfast if we spent the night. Not wanting to impose, I thought we should leave. I really did want to get on the road.
As the light began to fade toward sunset we drove east toward Murdo and Interstate 90. After dark we stopped at a rest area near Vivian for the night.
- Damned Transmission!
We spent a cool and restful night in the Bighorn Mountains, then descended the eastern slope towards Sheridan, Wyoming, where we restocked our food and propane, and more important, bought Western straw hats, de rigeur for summer in these parts. Our destination was Devil’s Tower National Monument, not for any particular reason except that Jennifer and Mike stopped there on their way west ten years earlier.
After an uneventful drive through wide open Wyoming under warm, sunny skies, we approached Devil’s Tower, where we saw vehicles lined up for two miles on the approach road to the monument. Did we really want to go in? No. We turned aside and continued toward a campground in Spearfish, South Dakota.
The campground was nothing to write about, but it had hookups, a laundry room, and a pool. With the dogs safely cooling inside the camper in air conditioned luxury, we cooled off at the pool, and I washed some laundry after dinner. Early night, lots of rest.
The next morning we started early and rolled back onto Interstate 90. No problems—until as we neared Rapid City, the CHECK ENGINE light came on, the speedometer suddenly dropped to zero, the cruise control shut down, and the transmission dropped out of overdrive. We were close to an exit, so I pulled off to figure out what just happened. I was about to call for a tow, until I realized I had no idea where to tow it. Searching the area, I found we were only 12 miles from a Dodge dealer in Rapid City. I called and talked to the service manager, and described the situation to him. He said it would be safe to drive there unless CHECK ENGINE was flashing (it was not). I made arrangements to bring the camper there, we gassed up, and drove on.
We spent the next 24 hours attempting to get the problem fixed, with mixed results. After replacing one part with a new one shipped overnight from Sioux Falls, the speedometer still didn’t work, but it was confirmed safe to drive. We spent the night with the dogs at a nearby hotel with an indoor water park and a pretty good restaurant.
The maintenance manager went out of her way to help us, even climbing up into our camper, which was stuck on their lift because they underestimated its weight, to retrieve our gear for the hotel. After a service call from the lift distributor, our camper was freed from the garage, we paid our bill, and left for Pine Ridge.
From Beartooth Pass to Cody, we passed some beautiful scenery. After we left Cody, we traveled through an arid plain between the Absaroka Range and the Bighorn Mountains.
Our lunch stop
On the Chief Joseph Scenic Byway, looking toward Yellowstone
The Bighorn Mountains
We climbed a steep grade from 6,000 feet up to the plateau atop the mountains at just over 9,000 feet, where patches of snow still covered the ground in spots. We had a spectacular view of the plain we left below us as we struggled toward the top.
That night we stayed in a primitive Forest Service campground, where the water came from a well with a hand pump. The water was good, but a bit sandy.
- Across the Divide
We pushed east along Interstate 90, enduring stretches of construction where the highway narrowed to one lane and the drivers behind us did not appreciate the pace I set. We took a cutoff toward Helena, Montana along U. S. Highway 12 and crossed the Continental Divide at McDonald Pass. There was no sign marking it, so I didn’t figure out until later that we’d crossed the divide there.
Beyond Helena, the landscape spread out into vast, wide valleys between distant mountains at the horizons, and to the east we could see that it leveled off more. It looked boring. Not the kind of scenery I wanted. We talked about it, and made a right turn to head south toward Red Lodge, Montana and more mountains.
Lauren had her own impression of Montana: “I find Montana confounding. It’s immense. More immense than anything we’ve seen so far. There are mountains everywhere on all sides, but you don’t feel you are in the mountains because the valleys and prairies too are immense. The entire state is a spring green. I’m Going to make up a pantone palette for every state we’ve been in.
“However, I don’t want to live here. And the reason is interesting to me because it highlights yet another thing I’ve felt I was missing and didn’t …know I needed. Like minded community. I do not feel I *belong* nearly anywhere I’ve lived. Philly and New York lack green spaces and access to clean air and water and wilderness. But there is creativity and there are entrepreneurs and there is a smattering of liberal ideology. The suburbs lack all of these things along the eastern seaboard. I die a little every day in suburbia.
“Montana does not smack of community to me. Though I’m sure there are some, I’m equally sure they’d have a foul mouthed opinionated creative free spirited educated woman like me tied to a fence post and left to the grizzly bears. So it’s off to Wyoming tomorrow, over the Beartooth pass. I am so sad to leave behind the coast and the forests. I think re entry to New Jersey will be painful.”
Our route took us into the Absaroka Range and south to Cody, Wyoming, where we turned east and crossed the Bighorn Mountains. I didn’t always enjoy steep climbs and descents along twisting mountain roads, but I liked straight highways across flat plains a lot less. The view from the top of Beartooth Pass, like the views in Rocky Mountain National Park, was beyond words to describe, and the arduous trek to get there made it worthwhile.
- Leaving the Coast
Eventually we left the Columbia Gorge, driving across flat, dry terrain in the rain shadow of the Cascade Range, to my aunt’s home in Kennewick. She lives in a small, immaculate house on a golf course, and golfs regularly. She welcomed us into her home for an overnight stay, and filled us in on stories of the family’s past in Washington.
Lauren wrote, “We drove all day through the Columbia river gorge to the dry sunny side of Washington state to arrive in Richland-Kennewick. Here, last night. I met my great aunt Jackie Minton for the first time ever. She’s 89, healthy and whip smart. What a great conversationalist! Her husband Art was a local officer in the Oil, Chemical, and Atomic Workers’ Union. They lived for some time in Alaska. She told me stories about how members of our family purchased temporary war housing that had been caught and damaged in a flood, disassembled the lumber and carted it from its original location to my great grandfather’s farm, and reassembled it there to live on. The property she lived on there had no well so she had to carry water in cans daily to her house. This property was directly across from the family cemetery dad and I visited in Vancouver on Saturday. Such fascinating stories about my own history. It’s interesting because my father might have otherwise told me these things back in NJ, but it would not have registered and remained in the same way as it does to learn these things this way.
This morning I will meet my second cousin Jeanette Kay Minton Barnes.
From here we drive east. East of the coast, east of all this rugged beauty, east of my origins, and east towards home. We will likely be camping somewhere in Idaho tonight.”
We left Portland to drive east along the Columbia River to my aunt’s home in Kennewick, Washington. We stopped at a rest area to watch windsurfers in the constant gale on the broad river. The wind was so strong Lauren could lean into it.
This was the best view we saw of Mount Hood.
The wind never let up.
We had a great visit with my niece Cheryl and her husband Doug in their Portland craftsman bungalow. Lauren wrote “Portland exceeded all my expectations. It was SUCH a delight to spend time with my cousin and her husband who have cut out a deeply pleasant existence In this great city. Had a hot soak in Kennedy pool, visited Hollywood Theater and got a tour that included the projection room where they have 70 and 80mm projectors and films, great food, Chinese gardens, test rose garden, hour arboretum, downtown portland…. just a beautiful place.”
Our dogs romped with theirs and had a great time.
We were escorted around the city Sunday morning, to the Chinese garden in the heart of the city, to the botanical garden on the west side.
Breathes there a man with soul so dead,
Who never to himself hath said,
“This is my own, my native land?”
My grandfather’s house in Vancouver, where I stayed one summer at eight years old.
Standing close to a giant redwood tree in Hendy Grove, I reached out to place my hand against the bark, trying to feel directly the continuity of life from ancient time into the future, as if to diminish my loss by joining the flow of life through that behemoth.
Humboldt State Park redwood grove. Look carefully near the bottom of the picture.
- Northern California
Dad and I are having a blast. Northern California is the land of the beautiful people. Finally, I fit right in.
Northern California Gallery
Fifty years later, we stop at Trees of Mystery on highway 101 north, and Lauren re-enacts Jennifer’s pose from 1968.
Here’s how Jenny looked in that spot in 1968.
- Southern California
It’s been very comforting to me to reconnect with family and to meet and get to know my Cousin Kim Giuffrida’s beautiful, intelligent, poised and vivacious daughters.
Having breakfast with them this morning was a delight, and reminds me that I still have living family.
Back in LA. Yesterday was a looooong day. I have SO much to process, emotionally, intellectually and photography too. There are things I didn’t consider about this journey, and a big one of these was the lack of down time. I’ve spent a vast amount of the last 3 years alone and thinking. A road trip of this nature simply doesn’t allow for that. Camping, hiking and time spent in nature would normally provide time like this, but a hike on a mountain such as Whitney also require…s a great deal of prep, thought and action.
I’m exhausted. The twisting banked mountain roads and possibly the altitude made me terribly sick yesterday. We left at 8 and didn’t get back to LA until midnight. Driving LA,s freeways sick and exhausted at night was just surreal. Especially juxtaposed with the wild Jurassic beauty of the Sierras.
I’m gonna need to think. A lot. And spend a few hours alone.
- Silver Lake
Tired but hopeful, we have arrived at Silver Lake campground near June Lake, California. A beautiful place.
Heidi and Plato have gotten closer together on this trip.
- Mirror Lake
We arrived at about five o’clock. As the sun sank toward the peak of Mount Whitney to our west, we carried out our ceremony of scattering Diane and Jennifer’s ashes at the place where I met Diane in 1967.
In the sweat of thy face shalt thou eat bread, till thou return unto the ground; for out of it wast thou taken: for dust thou art, and unto dust shalt thou return.
Afterwards, Lauren drifted to the shore of Mirror Lake and took photos.
Well, it is the end of a very, very long day. We reached Mirror Lake as planned, and searched around for the exact place where Diane and I met in September of 1967. I finally located the rock where she camped in the rain, leading her to accept my offer to sleep in my tent. The rest is history.
After a brief ceremony we dispersed some of Jennifer’s ashes, in memory of the time she wanted to come with us to Mount Whitney, but due to an infection, could not. And for Diane, now she rests in a beautiful place, surrounded by the nature she loved. And since the campground has been closed permanently, she will rest there forever.
It is done.
- On the Trail
One by one, many of the moving parts of our journey have fallen off by the wayside, like furniture and bedding lashed to the back of a 1923 Ford pickup driving west from the Dust Bowl, left by the side of the highway in our urgent quest for a goal with no known reward except possible release from a lifetime of memories: our camper sits ailing where we left it for the mechanics to work their magic, now the dogs at a green oasis, to be minded by a kindly creature of the desert…
Now we travel with each other, surrounded by memories and spirits of the past, hoping to reach some kind of peace at ten thousand feet in the heart of the mountains.
Will we emerge from the wilderness, draped in white raiments, cleansed of our sins, and full of a new kind of power?
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