Taking pride in vulnerability does not mean always being scared or sad. It’s quite the opposite. It’s about being authentic in whatever situation you find yourself in life.
One of my new work cohorts encouraged me to take an Enneagram test to see where my personality fits on the spectrum of such things. I signed up on Truity and paid $19.99 to get the full results. The outcomes were interesting, with all my best qualities and flaws laid out in black and white.
Somewhere late in the PDF, which is replete with graphs and charts about personality and life traits, I noticed a quote highlighted in the headline of this article. “True strength comes from the courage to be vulnerable.” I sat there a minute and thought: “That’s exactly what I meant by calling my book “The Right Kind of Pride.”
The Right Kind of Pride is precisely that: the consistent action of taking pride in the willingness and courage to be vulnerable.
As for that book, I’m pretty sure that some people are scared or uncomfortable about reading a book about cancer survivorship. But it’s not JUST about that. The eighty-plus blogs I compiled speak to the the value of authenticity in all situations.
Here’s the basic fact: All of us must be survivors of one kind or another. Plus, none of us gets out of this world alive. All I can say is that when it comes to getting through the tough things in life, vulnerability is truly powerful.
Caregiving
Before our marriage in 1984.
Over eight years of caregiving that was the principal way that I found hope and support.
Originally, I oversaw my mother’s journey through lymphoma and pancreatic cancer, followed by a stroke and finally hospice. Her passage left me in charge of caregiving for my father Stewart Cudworth, a stroke victim from 2002. I would remain his caregiver through his passing in 2015 at 89 years of age.
That all began in 2005, the same year that my wife was diagnosed with Stage IIC ovarian cancer. Immediately I was graced by an offer of support from the preschool director and her team of teachers at the school where my late wife Linda taught. For the next eight years, those people and many others (thank God) were willing to help us through the ups and downs of cancer treatments, including surgeries and recovery, chemotherapy, prodigious drugs and side effects, and emotional challenges deeper than we’d ever imagined possible. We’d make it through one segment of treatment to remission only to have the cancer return. That progressed with rapidity like the sound of a ping-pong ball as it taps out from its original dropped height.
During all that time I blogged to our caregiving support group about the blessings and challenges we experienced, and things we learned along the way. Those blogs formed the bulk of the book I wrote titled The Right Kind of Pride. Then I wrote a prologue and epilogue, including A Goofball’s Guide to Grief. Because I am. A goofball.
Making the most of my hair before it all went away in my late 20s.
Personal journal
But I also kept a personal journal for thoughts that were not ready for public consumption at the time. I’d actually forgotten about those words until recently when I opened up a thick journal given to me by my mother-in-law for my July birthday in 2012.
I’d been thrown out of work earlier that year by an employer who fired me the day after they learned my wife had cancer. So I was freelancing and trying to cover everything from COBRA insurance costs to the daily costs of living. Fortunately, I was able to find bits and pieces of work to tide us through, all while dealing with the difficult fact that Linda’s health was decreasing in quality. She started having seizures in the fall of 2012, and then we discovered a brain tumor that required surgery, radiation and steroids to treat, and after that, things got really tough.
Calm realizations
At that point in February of 2013, I landed a new job and was trying to do my best at it. But the daily challenges of helping her through were significant. By February 11, it was even tough for her to get around. “Linda sleeping on the couch upstairs,” I wrote in the journal. “Chuck is on the Ottoman, leaning on my leg until a few minutes ago. Following me around all day. Linda improved a bit, for a while anyway. Big day tomorrow. Meeting Dr. Ferris and Dr. Dolan.”
We made it to the appointment with the medical oncologist Dr. Ferris. But things didn’t go all that well. She could barely stand to lie on the table, and the doctor pulled me aside and made a calm recommendation of palliative care going forward. I knew what that meant. And besides, Linda was too exhausted from gut swelling and fatigue to make the trip from Warrenville to Advocate Lutheran General to see the physician that treated her so well from the outset. I could barely get her home.
Constructive thoughts
I wrote in the journal on February 14, Valentine’s Day 2013, “Well, my objective with this journal is to focus on constructive thoughts rather than destructive, which so many other journals in this house seem to have been. In a constructive fashion, therefore, it is still important, most important, to acknowledge that Linda Mues Cudworth––or Linda Ann––is in the process of dying. She has been a most wonderful wife all these 28 years, and wants to continue if only she could. But her cancer is catching up with our dreams of going places together and doing things. We had both promised to get to Glacier this year––together, if her health would allow it. Now it seems more likely she will be gone, the earthly part of her that I so love anyway. Our relationship has gotten richer these past 8 years. Richer than money and wealth combined. Our mutual failings and weaknesses have fallen away. She has told me that she loves me and I believe her now. I have told her that I love her and she knows it now. Our wedding vows have been fulfilled; for richer or poorer, in sickness and in health, till death do us part.”
We made many trips to Decorah, Iowa over the years. One of the prettiest spots in the Midwest.
Reading those words again nine years after she passed away on March 26, 2013, gives me both sadness and satisfaction. We did the best we could all through those years. “Sunrises and sunsets still await,” I continued writing in the journal that February. “And spring as well. Hurts so much to know that she may not be with me. So soon. So sudden. Yet we have lived well together, the best we know how. I love you Linda. I always will. God Bless your kind and spirited heart. Forever.”
The promise of vulnerability
It would still be weeks before the end of her life came. But we opened our lives at that point, trying to bring our children and family, friends, and associates into the sphere of vulnerability. If you absorb nothing else from these words, please embrace the truth that “true strength comes from the courage to be vulnerable.” We lived that reality and I can promise you that while things don’t always happen or end how you’d like or expect, the courage to be vulnerable is one of the most valuable human traits of all. It expands all the good things that life has to give.
It’s fascinating to study yourself objectively through a test like Enneagram. It’s a valuable thing to learn what emotions and character traits drive you from within, and how that translates to life and relationships. And it’s the core of who we are that matters. Letting others see that in you can be a wonderfully empowering force in life.
Linda Cudworth passed away on March 26, 2013. While appreciating her life, I am grateful for the things life and love continues to bring.
The day after Christmas in 2012, my wife Linda and I were scheduled to meet with a neurologist at the Central Dupage Cancer Treatment Center. We managed to have Christmas together with her family that year even though her father passed away that winter. He’d had a heart attack while sawing up a giant oak in his own backyard, Following that incident, he developed dangerous swelling in his legs that ultimately led to kidney failure.
All that fall, we teetered back and forth between hope and reality for my father-n-law. He did kidney dialysis, and it seemed to work, but swelling kept coming back.
Meanwhile, Linda was experiencing an series of seizures. We thought they were a side effect from yet another set of chemotherapy treatments. In any case, it was scary stuff. We’d be out for a gentle walk and her body would start to tremor and shake, but she refused to give up her love of movement and being out in the sunshine.
A combined team of oncologists from Central-Dupage hospital and our longtime gynecological oncologist Dr. James Dolan conferred on her condition. Finally a test was ordered to check the condition of her brain. On December 26, we found out the disturbing news. The ovarian cancer that had afflicted her since 2005 had reached her brain.
“It’s not supposed to be able to breach the blood-brain border,” an oncologist told us. “But here we are.”
We sat together facing yet another shock on December 26, 2012.
It had been a long and difficult year. Back in March, I’d been fired from my job the day after the company learned that she had cancer. We’d kept her cancer a private matter when I started the job, but I finally had to tell them when it came roaring back late that winter. I knew that she’d require more attention with driving her to appointments, staying with her through chemotherapy and taking care of her in between treatments.
Granted, we had a wonderful caregiving team built up around us, but there are always some things that only the immediate family can handle, especially in a life-threatening situation. So I explained our situation in simple terms to the company where I worked, and they promised us support. That was on a Monday, but by Tuesday morning they came forward with an accusation that I’d breached company policy by posting an image of the work I’d done for a client on my personal website. When I walked into work that day, I came face to face the owner, an HR director and a lawyer equipped with all kinds of documents telling me that I’d somehow put the company’s reputation at risk.
No consideration was offered for the stress I might have been under, or how that situation might have affected my judgment. I was out the door and soon forced to pay $2000 a month in COBRA premiums to hang onto medical insurance. All because the owner was frightened that my wife’s condition might increase the company’s insurance premiums.
I appealed the case to the Unemployment system and was blown out of the water by the judge holding the teleconference. He introduced all the evidence the company presented and disallowed everything that I’d provided in relation to the case. I was railroaded, in other words, by a labor-sympathetic judge. Even my best friend, a labor law attorney, was disgusted by the outcome.
But rather than dwell in that space forever, I chose to reach out to that owner in subsequent years and we talked about all that had happened. Forgiveness took place.
But that didn’t help us in the near term.
Little miracles
That summer we struggled to make bills, and sat together praying one night that I’d find a freelance job to cover the $3500 we needed to make ends meet. That next morning an envelope arrived through our front door. It was stuffed with $3700. We hadn’t spoken to anyone about our situation. Other money from our church came our way as well. We hung on, kept her treatments going, but the cancer was relentless. By fall, a tumor was discovered next to her colon. If it could not be removed, the whole colon would need to come out. Then she’d need a colostomy operation. I admit that I was not looking forward to that outcome.
The gynecological oncologist did miracles in the surgery room and my selfish prayers were answered. And then, the day my wife got out of the hospital after surgery, we drove straight to the hospital where her father lay dying.
Crash course
My cycling jersey after the bike crash in September of 2012
As if that had not been enough challenges to face in 2012, I was still recovering from a bike accident that happened earlier that fall. In September I was cycling in a rare weekend getaway with friends while my wife staye back home to spendtime with her family. During the ride, I was cruising down a long hill at 40 mph when a case of bike wobble set in. I crashed in dramatic fashion, flying off the bike and tumbling down and embankment where I lay in shock with a broken collar bone. My friends didn’t know where I’d gone. One of them was ahead of me by fifty yards and the other had not yet crested the hill when I crashed. So I got help from a band of other cyclists who called for an ambulance. I wound up in a tiny Wisconsin hospital in Dodgeville. They pumped me full of Vicodin until someone finally reached the wife of one of my friends. She’s a nurse, and she came to gather me up for the trip back to our campsite.
All that time, my wife was at her parent’s house having yet another seizure. My daughter begged her to go to the hospital, but in typical fashion, wife refused. When the call came that I’d been in a bad bike crash my daughter was in the center of all sorts of trauma. A dying grandfather, a mother shaking to death from cancer, and a father now injured badly after a bike accident.
The effects of trauma
We tend to take these traumas too much for granted in our lives, but they do have long-term effects. We grieve, but perhaps we do not fully process what’s gone on. We move out of that emotional space, but probably not all the way. We deal with what we can in the moment, but life has its demands. So we trundle on. Not fully healed, yet not terminally damaged. If we’re lucky.
During the late stages of my wife’s life, my son was working in New York City. He had to deal with all this strange news from afar. “Do I need to come home?” he asked. It was hard to tell him everything that was going on. It was even harder to figure out what expect of him. My wife said, “Tell Evan I’m fine. I don’t want him to worry.”
My daughter was finally off at college after two+ years of coursework at a community college. She was doing amazing things in her communications studies, even doing live spots on public radio that summer. Her mother was so proud and amazed. We’d sit close to my Mac listening to the live stream and she’d turn to me and go, “That’s Emily!?” Hearing our daughter work professionally on the radio was a welcome joy.
Dealing with the options
But the events of that year kept overwhelming us. And that brings us back to that moment in the cancer treatment center when we found out that my wife’s cancer had moved into her brain. “Here’s what we can do,” the neurologist told us. “We can go in through the top of the head and excise it. Then we’ll apply radiation.”
We sat there thinking about those options. My wife did not have to think long. “Yes,” she said with resolve. And she smiled, “I mean, why not?”
Why not, indeed. We’d been through multiple surgeries, countless rounds of chemotherapy and many times, we got back to some form of ‘new normal.’ But this felt different to me. I looked over at her and smiled. She gave a thumbs up sign when she was ready to go.
Before the brain surgery and radiation. I’ve kept this photo for ten years.
So we came back for the treatment. They didn’t even have to shave her head. She’d lost her hair several times over through treatments, and this time her hair had not come back at all. She stripped off her wig and they began the process of affixing a stabilizing unit to her skull. It consisted of a circular metal band with screws that would be used to hold her head completely still. She posed for a couple quick selfies using the Photo Booth application in my little black Mac Laptop, and off she went.
The treatment worked. They captured and killed the cancer in her brain. The seizures stopped. They gave her a steroid prescription to deal with the swelling caused by the surgery and radiation. From there it was off to the races. Those steroids turned her into a Survival Machine. Her personality became magnified. She cleaned and cooked and sat up writing lesson plans for the preschool classes she taught. But as the steroids added up in her system, her sense of judgment disappeared. She spent money we didn’t have. One night she researched a new car, and that next day, we drove to the Subaru dealership and bought it. I wasn’t sure if she was getting money from her parents or what, but I sensed that something final was happening, and decided to go with the flow.
The steroid effect
Toward the end of February, she could no longer handle teaching at the preschool she loved. Her spaciness increased, and it frankly put the children at risk. I collaborated with her director to ease her out of the position. That was absolutely necessary. Yet despite our efforts to be kind, something in her broke the day that she learned she could no longer teach.
Once the steroid prescription was eased, her body and mind fell slowly back to a normal state. That was when I knew that she would not live much longer. The stress and fatigue of eight years of cancer survivorhood wore her out. During one of our last visits with the oncologist before bringing her home for palliative care, she was too damned tired to even get off the treatment room table. I spoke quietly with the oncologist that day. She was kind. And honest. And earnest. “Take care of her,” she told me.
Linda Mues Cudworth passed away peacefully in our home in March of 2013. My son and daughter were together with me that night. It is both a blessing and a strange truth to be present when someone you love that much passes into eternity.
Aftermath
We’ve all gone through gyrations in the wake of her passing. My son suffered through depression and a period of addiction. He’s emerged with a will not just to survive, but to help others process their mental health in constructive ways.
My daughter was just coming into her own as a young woman when my wife passed way. In many ways, that left a void in her that is hard, if not impossible, to completely heal. Every year, she recognizes more of her mother in herself, and the pain of losing her mom keeps turning over. Those are legitimate feelings. I know other women that have lost their mothers. I wish at times they could all talk with my daughter.
As for me, I’m not sure that I fully processed all that happened that year, or perhaps the many years before. During my wife’s eight years of cancer survivorship, I was also the primary caregiver for my father after my mother passed away from pancreatic cancer in 2005. That was the same year that my wife Linda was diagnosed with ovarian cancer.
My father lived another four years after Linda died, and I did my best to take care of him. After my wife’s passing, I admit that what I wanted most was to be free of the constant pain and fear involved in caregiving. But there was still a job to do.
Coping
During the eight years of caring for her, I’d been on and off supportive medications such as Lorazepam to help me deal with the anxiety of caregiving. It did its trick as needed, but some of that stress sinks deep into your soul.
I recall trying to ride my bike with friends during that period. I’d be out on a fifty or sixty mile ride with them, but when it came time to ride hard or compete, as cyclists love to do, I often did not have the will to keep up. I’m pretty sure that what I experienced was an active sort of post-traumatic stress disorder. Not the kind that comes from being in a war, or witnessing a murder, but the kind that comes from not being able to deal with personal shocks over and over.
As a form of therapy, I started blogging to our caregiving group to communicate some of the feelings I had about the things we were going through. Much of that was quite positive, and I’m proud that we found ways to find blessings and hope in all that trauma. That’s the right kind of pride. This blog is an echo of all that.
Anniversary
But this year, when December 26 rolled around, I realized it’s been ten years since that strange day when we found out that the cancer had moved into her brain. Once we knew the cause of her seizures, it explained quite a bit about what was going on with her body
But it also brought on conflicted feelings in my mind. Should I hope for her to continue going through the stress and pain of cancer survivorship? At that point, I began to grieve in real time. I understood that I no longer wanted to see her go through the awful stuff. The sickness. The numb feet and hands. The fear. The trauma of surgeries. The loss of life quality. Giving up the things she loved to do. None of that is ever what I wanted for her. It certainly wasn’t what she wanted. Some part of me was relieved when the pain was over. Through faith and reason and love of life, I began to move on.
For these reasons, I got ahead of most of the people in my life by recognizing that she was not going to make it through the year in 2013. I didn’t know how long it would be before she died, but I knew for certain that it would happen. Even her doctors were astounded at the job she’d done for so long in staying alive.
That’s not the kind of news that people want to hear from the primary caregiver, so I kept it to myself. Perhaps that was a mistake of some sort. But my wife had plowed through so many obstacles during her years as a cancer survivor that none of us could imagine it coming to an end. She was so tough about staying alive it did not make sense to question her. She surely showed us all what it means to love life. She loved her children fiercely, almost to a fault at times.
Endings
So we didn’t make end-of-life elaborate plans. We were so occupied with keeping her alive that we never discussed what to do when she died. But earlier in life, we’d talked about cremation, so that’s what we did. Her ashes rest under a grave marker next to her father in the Lutheran cemetery in Addison where she grew up. That town was the place where she attended the church gradeschool, then moved on to Addision High School. She graduated Magna cum laude from Northern Illinois University.
We met in October of 1981 and she lived until March of 2013. In all, we had a great life together; full of family, friends and most of all, our children.
The lilies being watered in our garden, circa 2011.
She also loved her garden so much that it’s hard to describe the satisfaction she got from her green craft. She’d sit in our LL Bean Adirondack chairs staring at her garden with a glass of wine, or a margarita, or one of her strong gin and tonics in her hand, and just enjoy.
Perhaps that’s why I moved on quickly from the trauma of her last year of life. That’s not how I wanted to remember her.
I chose to remember her cherishing the work she loved. She also told a close friend, the preschool director who served as our close caregiver for all those eight years, that she knew I’d date if she ever passed on. But that friend waited a full year to share that quiet bit of insight with me. I thanked her for waiting. We all need to make decisions on our own terms. I’m grateful to have had a wonderful life with my late wife.
I’m also enormously grateful to have found love again.
Gaining traction
Life is often complicated, and even the people closest to you have a hard time understanding the reasoning or motives behind some of the decisions we make or the changes and impacts that come with them.
Ten years on from December 26, I hope that people gain from reading this and find ways to embrace life even in the face of trauma, and even if life turns out different from what they expected.
It’s indeed a strange thing to go from the traditional joys of a December 25th to facing moments when the world itself seems to shift underneath your feet. Sometimes the best thing to do is to keep those feet moving, to find traction in the things we do and love every day. And please, let’s forgive ourselves for wishing the world would just stand still now and then. Take some time. Look at your garden, whatever that means in your life. It is the work of your life.
The farm in Upstate New York that I loved to visit as a child.
At six years old, most of us don’t have a great grasp of the world around us. Life revolves around parents and family. The rest of life is a mystery until we experience it.
During the summer after my second grade year in school, my favorite aunt and uncle traveled from their farm in Upstate New York to visit our family in Lancaster, Pennsylvania. When the time came for them to leave, I begged my parents to allow me to go with them back to the farm. To my surprise, my parents agreed.
A half hour later a bag was packed and I was plopped in the back seat of their car for the trip north to Bainbridge and the farm that I loved.
But the next morning, I woke up with a horrid feeling in my gut. I was homesick. If you’ve never experienced that feeling for yourself, it can be best described as a deep combination of longing and loss that penetrates your whole being. All you want to do is go home.
Confession: I was always an anxious kid. Already at that age, I chewed my nails. Looking back through a life of dealing with aspects of anxiety and depression, I realize that homesickness was a product of who I am. Learning to cope with anxiety is a lifelong job. I don’t blame myself for it, and these days I know myself well enough to function healthily. It wasn’t always that way.
The morning of my homesickness, I recall my aunt making a phone call to my parents, who drove up from Lancaster that day to fetch their anxious, homesick son. Apparently all involved had pity on me. Perhaps they knew those feelings well enough to realize there was no cure except to send me back home. Sometimes good caregiving is a matter of listening to the people involved.
Keeping me on the farm a couple days might have cured the homesickness, but I must have been a sorry sight with all those aching tears. I guess I can be grateful that adults had compassion for my condition.
The giant elm that once stood in front of the Nichols family farm where my mother grew up.
I looked up homesickness on the Psychology Today website. It had interesting things to say about homesick feelings. “A number of studies have suggested that homesickness can be associated with psychological difficulties such as loneliness, depression, anxiety, difficulty adjusting to new situations, and psychosomatic health problems. Given that being away from home can be accompanied by the sadness of missing it, one wonders why we form such powerful emotional bonds to our home. Surely, attachment is at least partly the product of all the wonderful experiences we enjoyed during our childhood.”
It goes on to say, “As poet Robert Frost famously explained, “Home is the place where, when you have to go there, they have to take you in.” Our bond extends beyond enjoyable experiences. It encompasses unconditional love, commitment, loyalty and enduring connectedness.”
Still, no specific mention of fear as a cause of homesickness. Perhaps there’s no reason. That emotion is woven into the DNA of anxiety and depression. It is both the cause and a symptom of those conditions.
The PT article continues,” Efforts to prevent homesickness must contend with a paradox. Although research findings have been inconsistent, homesickness seems to be more likely when children have had prior experiences with separation from home as well as when they had had little or no prior periods away. If homesickness is the price we pay for attachment to a strong loving home, would anyone want to diminish the quality of a child’s home to prevent the possibility of future homesickness?”
Like many children in that day and age, I lived in a home that was both loving and at times, a conflicted place. My father lost his mother to complications of cancer treatment when he was just seven years old. He went to live with an uncle and two aunts because his own father experienced profound depression at the loss of his wife and also brought on in some ways by The Depression.
So my father’s upbringing was at times gruff. His pain at losing his mother at such a young age was probably never adequately addressed. No doubt there were feelings of homesickness after being shuttled from his family home to a life with a tough old uncle and two unmarried aunts. The sense of loss must have been profound. Thus despite his largely caring character, he bore an anger within him that spilled out at times. His four sons tried to meet his approval but there was an exasperating and sometimes frightening tone to certain aspects of our upbringing.
So that feeling of separation from home as a place of safety and comfort is both a physical and emotional reality for all of us. Yet to this day, I still view our Lancaster house and yard as “home” in many ways. We moved away when I was twelve years old. A type of homesickness has traveled with me all these years. We’d have never left that place if I’d had my way.
A Google Maps photo of the family home in Lancaster, Pennsylvania.
Yet that would have denied me all the experiences that were to come and those were good. So while homesickness is real, it is also not permanent and is no way to define or limit one’s time in this world. We have to rip off the bandage at certain times in life, and move on.
All of us have some sense of home that lives within our souls. Sometimes it’s just the smell of a room when the windows are open… or the curl of a pillow as you roll over to face that person whom you love. It can be heard in the song of a bird calling in the trees, or the sound of a car pulling into a driveway.
Take in those sensations and indeed, you’re home again. That’s the right kind of pride.
Note: I’ve shared impressions about homesickness before on this blog because they symbolize so many other aspects of life. May you find that sense of home wherever you are.
People nearing my age often retire. Some run their career course and it makes absolute sense to cash in and cease working in the conventional sense. Others plan wisely and have the financial resources to allow them to quit working and do what they want with the rest of their lives. I’m glad for all those who achieve those milestones. They’ve typically earned them.
Yet I’m also glad for people that choose not to retire at a given age. While the age of 55-65 is often the traditional age for retirement, there is nothing that says you have to quit working at that stage. Our current President of the United States, Joe Biden, is 78 years old. The masterful Bob Dylan just turned 80. Many great artists work even into their 90s. What’s the damn rush to quit working?
Still, the pressures to do so can be daunting. I know a sales executive, now retired, who could not find employment after his company consolidated departments and he wound up on the outside. He’s living now in Arizona, and enjoying it. But at first he was hurt by the sense that he was no longer valued in a working way.
Those are challenging emotions for people at any age, and losing your job or needing to step back from employment is often a solid blow to the ego. So much of our identity is tied to our working life.
There is also the sense of “earning a living.” During my peak earning years I found myself out of work several times during caregiving for my late wife. At several times during eight years of caregiving she needed me home to take care of her through surgeries, chemotherapy treatments and recovery periods of both physical and mental consequence. The timing was seldom convenient to long-term success or building the perception of a steady-growth career. Each time I peaked in income, rising from $80K to $100K, cancer whacked us with a recurrence, and it was hard for her to work as well.
It felt like starting at Square One during each of those comebacks. Sometimes the return to work involved taking lower-paying jobs that were closer to home during periods of cancer caregiving. I won’t claim that I was a perfect employee during those periods of change, either. During those eight years, I was also principal caregiver to a father who was a stroke victim. The dual demands were daunting.
Yet I still managed considerable successes that included winning large accounts, earning national awards in public relations and marketing, and building a literacy project that served more than 375,000 families. But my failures included forgetting meetings, allowing the occasional typo to slip through, and trying too hard to protect my job by posting a sample of client work to my personal website. I was under enormous stress in the moment and didn’t think that decision through. It led to my dismissal just a day after I’d revealed to the company that my wife was a cancer patient. They brought in a lawyer to protect their interests in that circumstance after they’d promised to support us no matter what. It was hard not to consider that a cheap shot.
Plus, that situation left me with no job and COBRA insurance premium payments of $2000 a month. To say that some of our premium earning years were compromised by cancer struggles is a massive understatement.
So I’ve forgiven myself for not retiring at age 55 when some of my peers managed to do so. But here’s the odd truth about my actual attitude. I’m not eager to retire. In many respects as a writer and content developer, I’ve never been more capable and productive. Quitting now would be a shame, from my perspective. I still enjoy the challenges work provides.
I’ve also been an athlete all my life, and I’ m swimming, riding and running every week. I enjoy the sensations of being fit and active. That aligns with my daily writing, painting or producing creative content across a spectrum of platforms. Perhaps it would be nice to retire, but I feel like I’d still be doing the same things I do now even if I weren’t traditionally “working.”
As for a retirement plan, there is still time to make up the difference and that’s what I plan to do. The other main goal I have in life is to MAKE A DIFFERENCE. That is why a series of books I plan to publish are so important to me.
The first is a book titled Honest-To-Goodness: Helping Christianity Find It’s True Place in the World. It is a treatise on the roots of Christian tradition and how legalism leads so many people astray. It is a collaborative project with a Professor or Religion named Dr. Richard Simon Hanson.
The second is a book titled Nature Is Our Country Club. It is a book about the way golf courses thirty years ago realized there was a better way to manage their properties than pouring chemicals all over the ground and mowing everything in sight. The narrative traces how natural landscaping relates to the world at large, and what the human race needs to do in order to protect the earth on which we all depend.
The third book is Competition’s Son, a biography about life that deals with the effects of competition in all aspects of life; learning, sports, family, relationships, business, religion, success and failure, and emotional conditions ranging from anxiety to joy, from depression to salvation.
The first two books are finished and being prepped for release. My goal is to begin speaking and producing content around those topics going forward. All the while I’ll continue working because I love what I do. I’m glad for those who retire, but I’m also glad for those who don’t.
To me, that’s the Right Kind of Pride. How about you?
One afternoon while heading out of the college cafeteria during the last semester of college, a classmate clearing plates and cups from the tables in the Union lost control with her hands and it all came crashing to the floor. That moment inspired a poem that I wrote based on how she responded.
WAITRESS SINCE THIRTEEN
Although the saucer fit the dish, she turned too quickly, threw the cup,
and watched in vain as coffee stained her shoes and left her morning drained,
“You’d never know,” she said to me, “I’ve been a waitress since thirteen.”
Last night I was writing at a local eatery and overheard the head waitress talking about her previous places of employment. Both are well-known restaurants. They’re not cheap places to dine. She talked about the fact that some of the clientele was snooty, and that the establishments charged way too much for what they provided. Now she’s happier working in the open bar and restaurant atmosphere where customers are more down to earth. She works the room with candor and kindness. An expert waitress in her element is a sight to behold.
Hands-on, hands off
Two weeks ago in Florida, we celebrated a landmark birthday with a relative at their golf club. Our round was delayed by rain and there was a wedding going on upstairs where the main bar and grill are located. So we moved to the downstairs bar and ordered food and drinks. Things were getting merry among the members that had already played that morning. Several were showing the effects of drinking.
The waitress working the room is a veteran of such situations. I watched her deftly fend off the handsy attentions of a member well into his liquor. She kept a smile on her face the whole time while using her arms like fencing swords to redirect his advances. In those situations a waitress is something far more than a person who serves food and drinks. She was at once counselor and therapist well-aware that there would be a tomorrow even if her customer refused to recognize it in the moment.
Frontline dedication
During this pandemic mess, we’ve all learned who the real frontline workers are. They are people at the point of contact for all sorts of human interactions. This morning the Chicago Tribune reported that here in Illinois, customers will be required to keep their masks on while ordering food. That’s a small move to protect the health of those who wait tables. Surely some people will take offense to that requirement as they have toward the concept of wearing masks at all. But they would be selfish and wrong to do so. Sadly, some will refuse to comply.
That further places our wait staff in positions where they are forced to govern all sorts of human behavior. Here in America, waiting tables is typically viewed as some sort of servitude. Not so in other parts of the world, where being a waiter or waitress, or however you care to describe it, is considered noble work. It takes real character to be a good wait staffer, whatever the circumstance. It is a form of caregiving in real time. Our sense of community in this world comes from such dedication. Wait staff are the frontlines of civility.
In-flight service
The same goes for the people working these days as flight attendants. That profession has changed drastically over the years. Where full meals used to be served on many flights, these days it is more common to receive a bag of salty snacks and a glass of ice water.
The old standards about appearance that once applied to flight attendants are now gone. Travelers also don’t fly in formal wear they way they once did. Airplanes are now packed wall-to-wall with people to maximize profits for every flight. That strategy has backfired in the age of the pandemic, and the middle seats now sit empty.
The entire industry is a bit more low-brow and some regret that loss of glamour. Flying moved from an experience to be enjoyed to a gut-level mode of transportation. Airplanes are no longer a version of a flying restaurant for shorter flights. The in-flight movies can be nice, and Wi-Fi is appreciated. But these are more about sharing isolation than engaging in the communal experience of air travel with flight attendants as hosts.
Noble work
It is still noble work taking care of others, despite what the prideful and selfish among us care to think about it. In a world where so many people behave grotesquely in public while looking down on others for their manner of earning a living, it is the right kind of pride to look for the humanity in all those doing their jobs. Because unless we all do that, the world is doomed to its caste-like appetite for tribalism, wrought with greed, dismissiveness and abuse.
So to make the point about treating others right in public, we’ll leave with this video from the Monty Python movie The Meaning of Life. The first time we watched this in the theater my brothers and I almost heaved up our popcorn while nearly dying from laughter. Absurdity is often the best illustrator of graphic abuse. There’s a little too much Mr. Creosote in the world right now. That’s not the right kind of pride.
The first time I worked remotely was back in 1994 during the original advent of email communications and the Internet. I’d started a small company called Environs whose clients included a fitness company, a real estate management company, a pair of newspaper companies, and a few other clients.
Communicating via the web was not too slick back then. My nifty new Powerbook 540c laptop had dialup capabilities, but the connection process as you might recall was slow, noisy (that dialup tone was classic) and bandwidth was limited.
But to me, it all still felt like magic. I could communicate with clients far away, send and receive proofs of creative work and writing, and seldom feel alone.
Technology helps
Because while I’ve never been a tech device geek or software coder, I’ve always loved what new technology can do. Clearly, I was not alone in that realm, as Apple products appealed to people like me who found the IBM/Microsoft world offensive in its lack of intuitive traits and its often cloying yet clunky interface. If I could have obliterated that paper clip character when using Word on client computers, I surely would have.
The arc from the early days of Apple through the Macintosh years to the melding of compatible software with Microsoft pushed the world toward increased efficiency, and it has all been remarkable. Now many of us are working from home thanks to the enhanced speed of computer performance and Internet accessibility.
While I’ve worked as a full-time employee in marketing, communications, and public relations for thirty years, I’ve also always worked from home in some capacity. So the Coronavirus demand for social distancing and WFH mandates is nothing new. It’s just a matter of plugging into another new reality. Some people find it easy while others struggle with a sense of isolation.
The multi-tasking debate
The first question everyone has to ask themselves when working from home is how much multi-tasking they can or should try to handle. Some efficiency experts insist that multi-tasking is the absolute bane of productivity. “Don’t do it!” they’ll insist. “You can only do one thing well at a time.”
Well, the parents of children working from home can’t afford that luxury. So people adapt to circumstance as need be. As a person that was once a caregiver to three people simultaneously while holding down a full-time job, I learned how important it is to build a solid foundation of self-affirmations.
I was looking after a mother with cancer, a father with a stroke, and a wife with cancer, so I learned quickly to give myself credit for things accomplished. I also learned that multitasking isn’t a luxury at all. It is oftentimes a necessity. People working from home have to juggle multiple worlds. That means learning how to compartmentalize the daily task list, putting things into groups, and doing things in segments. It can be a great feeling to see a chunk of work through.
There is no real reason you can’t shift gears, do some other things in groups and segments, all while keeping a line open for unexpected calls and unanticipated emergencies. It might seem more stressful than working in a contained office space, but learning how to cope in different environments is, over the long term, a quite valuable skill.
The drama in your head
Here’s a ‘dirty’ little secret about working from home. The world outside often can really wait. It’s the drama in your head that is the real traumatizer when you’re working from home. Granted, some companies are measuring every moment spent and every keystroke logged. So let’s not be naive. If that’s their measure of true productivity, it may well be the case that any day-to-day functions need to rest outside working hours.
But for many of us, it’s a question of how well we get the job done, not how many keystrokes we’re plinking away during the day. If the kids need attention or the dogs need a walk, go do it. You may well solve a problem in your head during those activities. Almost all the solutions to problems that I conceive are the result of going out for a run or a walk. It works miracles.
Through success and failure while working remotely, learn to take a breather and step away if you need to. Working out at noon can be a great way to break up a day. Sitting at the same desk in the same office you’re occupying 8-to-5 or longer can be physically and mentally exhausting. Go outside and walk around for even five minutes if the pressure builds up or you grow frustrated. It’s a great way to find perspective.
Practical measures
There are some practical measures you can take to quell any productivity drama that builds up in your head. Take a moment to document what you’re doing and develop the instinct to be tactically sparse and ‘remotely confident’ when communicating your progress. If something isn’t getting done, or you need answers and can’t make progress until you get them, be honest and even-keeled about it. Many times the people with whom you are communicating are also juggling tasks and just want to know when to pick up the next task. Amusing fact: they may even be relieved that you’re not outworking them. But where there are genuine deadlines to be met, don’t hedge bets. Prioritize those first and don’t let distractions get in the way.
Doing things right
At one of the agencies where I worked as a creative director, our graphics department had a saying that went like this: “We always have time to get things done in a hurry, but never time to do them right the first time.”
That’s a hard thing to remember when communicating remotely. We all make mistakes of passing things along just to get them out of our inbox and “done.” So remote work requires us to take one extra look at the things that we and our associates do. It never hurts to enlist a partner in that process. Having a champion alongside you in project management helps to confirm the importance of what you’re doing and can provide important reminders of when things need to be done. And how to do them right.
Look for consensus
Working remotely is increasingly reliant on group conferencing calls through Zoom, Teamworks, Google Meetups, and the like. All these apps are scrambling now to improve their capabilities and win the market for remote conferencing. Yet it all comes down to one thing: providing a platform where people can build consensus around ideas, projects, and plans.
To be a successful conferencing user, look for opportunities to be a leader in building consensus. We don’t know how long this WFH world may last, so you’re a valuable team member if you help people come to an agreement and even inspire and motivate others. It’s entirely possible for you to be that person.
Ask questions
Want to know the easiest way to lead in this world? Be prepared to ask questions. Make up a list of smart and necessary questions before any conferencing call, or issue one good question per session to contribute in the best way you can.
And when communicating via email, chat or any other channel, ask questions quickly if you’re going to ask them at all. We can all make the mistake of waiting too long to get clarity. That leaves the impression that 1) you’re not on the ball 2) don’t care 3) don’t understand the project as a whole 4) are unsure of yourself.
Prioritizing
Being quick or attentive to potential problems may be the most important “rule” of all, but it’s not always easy to do when working remotely. Just like the “real” office, people aren’t always available.
In that case, make a point of considering genuine solutions. That value is even greater when you’re directing projects for multiple clients, as freelancers often do.
At all points, people need to learn to prioritize, and we all know pleasing everyone can be tough. No client or partner likes to think they’re playing second fiddle to what you’re doing while working remotely.
Surely that holds true in working for bosses and collaborating with teams or other partners. It all comes down to focusing attention where it is needed most. That’s the base principle behind all successful remote workers. Give full attention to whatever is in front of you, ask questions early and to fully understand the goal, and multi-task by prioritizing at all times.
Most of all, take pride in your work no matter where you’re doing it. That’s the right kind of pride.
Christopher Cudworth is author of the book The Right Kind of Pride: Character, Caregving, and Community. Available on Amazon.com.
During eight years of caregiving for a wife with ovarian cancer, there were many times when nurses served to help us get through the challenges of treatment, surgeries, chemotherapy and in the end, palliative care. I wrote the following essay about the value of nurses for the caregiving group that formed around us. Later it was published in The Right Kind of Pride, the book I wrote about our journey and for which this blog is named.
With nurses doing so much work on the front lines and as first responders during the Coronavirus and Covid-19 epidemic, this bit of testimony is meant to encourage nurses everywhere, and to urge people to appreciate their training and work
Nurses, literally and figuratively
Tuesday, December 20, 2011, 5:30 PM
Two days after my wife’s surgery I woke early to head west and pick up our dog to go home and check on the house. Stepping onto the elevator I encountered two tired-looking nurses leaning on the back wall.
“Shift over?” I asked. “Yes,” one of them breathed, trying not to look too relieved.
“Well, I admire your work,” I told them. “Patients can be a pain in the butt, I’m sure.”
“You said it, not me!” one of them replied as they headed out the elevator and down the hallway, exchanging knowing glances.
No easy gig
Nursing is no easy gig, of course. Nothing in the medical profession really is.
They see so much, both literally and figuratively. Nursing is the most intimate of all professions. Even more so than being a doctor, in some ways. From inserting catheters to administering shots to washing patients who can’t wash, nurses see humanity up close and personal.
There are also broader dimensions. Families in crisis. Human frailty laid bare. The human condition. On those dynamics rest hopes of healing. That is why medicine exists, and nurses carry it out to the best of their abilities.
Of course, nurses deal with varied results and varied perceptions of their profession. Not having worked in the medical field, I do not entirely know what the environment is like. But some nurses I’ve met speak of doctors that do not treat them well, or show respect. Maybe the pecking order at some hospitals is harsh. Yet the good hospitals seem to celebrate every role from orderly to surgeons. And there really are some great hospitals in the area where we live. We can be grateful for that. And this is no paid testimonial.
But I’ll reiterate: When we think about who provides a great amount of care and recovery in medicine, we should never forget to thank the nurses, both men, and women. There was Allan, and Silvia, Rafaela, and Kathy. the list goes on. All with attributes that add up to good care.
Professional caregiving
Because nursing is basically professional caregiving, it is something to observe when you’ve been placed in the role of caregiver yourself.
The challenging part is that the tools have advanced but the needs have not changed. The records have gone digital. The ability to monitor patients is so sophisticated. Yet it is still the human responsibility of nurses to read those signs and pass them back along the chain for the doctors and surgeons to study. Front line. First responders. In tune. In touch. That’s the role of nurses.
It is a cosmopolitan profession. The nursing professionals in the four or five hospitals with which we have had experience are quite racially diverse. Hospitals seem to hire nurses to match the culture and backgrounds of their constituent populations. But not always.
Language is another important aspect of nursing. For example, at the network hospital where Linda had her surgery, the primary phone greeting is given in several Eastern European languages. Diversity is not some casual thing at a hospital. It really can mean life or death.
Communication
Style of communication is also important in nursing. Some nurses excel in this category, with a gift for compassion that is comforting and encouraging. Others are more business-like, and their attributes can be of tremendous value in many circumstances. Linda’s chemo nurse this time around was a focused woman whose competency and the organization was of great assurance. Success in chemotherapy treatment can depend on the nurse’s ability not only to administer the medicine but also to track and monitor patient response in real-time (daily response to treatment, blood counts and side effects and over the course of treatments (chemo tolerance and patient affect) these attenuations add up. Literally and figuratively.
Racing for life
Getting chemo really is like running a marathon; checking your vitals along the way, taking aid at the proper points and pacing your effort so you don’t falter. Chemo is a marathon.
But surgery is a sprint of sorts. Our surgeons fixed a hernia, did a colon resection and removed a 31mm cancer tumor in about 2.5 hours. That’s fast and brilliant work. You can worship athletes all you want. Medical doctors like these deserve real accolades.
It is the nurses however who are the trainers that get you back into shape after the taxing sprint of surgery or the exhausting marathon of chemo. With cancer sometimes you need both to be successful. Fast-twitch and slow twitch.
The range of human foible
That and a sense of perspective and humor helps. I was really glad the people at the nursing station had a sense of humor when after the first night at the hospital I trundled out of Lin- da’s room at 5:00 a.m. to visit the bathroom down the hall. No one looks dignified at that hour, and I felt a little like a college freshman in a “walk of shame” down the dormitory hall after an all-nighter. But no one said a word. They see weirder things every day. Lucky for me, a bald man seldom has bad hair days.
Nurses see it all, of course, the whole range of human foible. Being able to encourage patients with an occasional jest about the difficulties of recovery can break the ice and open channels in working through pain or other humbling issues such as finding ways to go to the bathroom when it is far from easy and convenient for the patient. All this basic stuff,. They have to know when and how to be light about it, and when not.
Startups and bending over backward
Nurses are the professionals who get it all going for people again, over and over. Week after week. Year after year. Think of all the focus and dedication it takes to be a nurse for 5, 10 or 25 years. And people do it.
The nurse who checked Linda out of the hospital has been working in the same phase of nursing for 25 years. She was immensely practical and detail-oriented, dispensing instructions so that we would know how to care for the surgical wounds and tend to bathroom matters the right way. That nurse fit her job.
A young nurse named Rafaela checked on Linda regularly during her week in the hospital. She seemed to appear like magic from around the curtain whenever there was a need in the room. That nurse excelled in care.
The first night after surgery, Linda’s nurse was a soft-spoken woman who struck up a conversation starting with a compliment about the fact that I was staying overnight with my wife. Perhaps it is not so common for people to stay over. The new Planetree model for health care offers a more humanistic approach to medicine and facilities, especially hospitals. Hospitals now provide comfortable couches that convert into beds so that family or supportive friends can stay overnight with a patient.
I can tell you that’s a huge improvement from the night spent next to her bed back in 2007 when the only available place to sleep next to her was something like a Medieval torture device. The vinyl recliner on which I slept formed a pronounced hump approximately the curve of a mature dolphin in mid-jump. It was not the most comfortable night of sleep in my life, punctuated as well by beeps and whistles and the bustle of nurses hustling in and out for blood pressure checks and temperature readings. They were just doing their job, yet I felt like it was a torturous night of sleep deprivation in a black site somewhere in Eastern Europe. I exaggerate, but when you’re tired the mind works overtime.
To her everlasting credit, my mother-in-law, who had done overnight duty on the dolphin chair the previous evening tried giving me fair warning without scaring me off completely. But let us say that it was one of the 3 worst nights of sleep in my life. The top 2 were surviving a bad bout of the flu and one very long night in the late 1980s with a prostate infection that made my lower abdomen feel like I’d swallowed an angry serpent. I don’t really want to list a Top 10. The memories are too painful.
But the dolphin chair simply had to do in that instance. Such are the duties of caregivers at times. It’s like God wants to humble you into sympathy for the patient. So I thank God for Planetree now.
Patience and patients
Still, as a caregiver, I lose patience in too many situations, grow irrationally embittered by circumstance or fall too quickly into self-pity or worse, anger or depression. What is the cure for those selfish emotions? Mostly, it’s gratitude. Step back and take a breath. Be a nurse to your own soul. Forgive your- self. Then get back to service.
Because it’s a miraculous little dynamic that when we fix our focus on serving others we wind up serving our own true best interests. That’s where we learn we are not alone in our challenges and our minds off our own problems.
People who through simple self-control and a modest demeanor exhibit such patience always amaze me. Admittedly I envy people like that, especially when failing to manage that level of self-control myself. Where do some people get such strength of character? Can it be learned? Are some people just natural caregivers?
Probably those questions cheapen the issue. It is, of course, a complex combination of things that makes people good caregivers, or nurses, or doctors. Or perhaps it is simplicity that makes it possible. Be content. Learn to give. Don’t make life harder than it needs to be.
When it comes to institutional compassion, that is a goal much harder to achieve in some respects. The hospital where Linda had her surgery communicates its compassionate values in many ways. If I recall correctly, one of the messages posted on the wall reads, “We welcome all to this place of healing.” There’s definitely room for a religious message in there, but not an exclusive one. As it turns out, our nation is actually formed on a similar, inclusive ambiguity. So uniquely Ameri- can. Yet people seem to miss the subtlety in that. Want to turn it into an ideology not in keeping with the Constitution which guarantees freedom of religion and freedom from religion.
We are all equal souls. Nurses probably know that better than most. There’s nothing special about any of our functions. We all poop and pee. We all have a heartbeat. Breathe. Think. Cry out in pain. Laugh. Worry. Hope. Heal if possible. All part of the process. Such is humanity.
You know that cynical phrase, “some people are more equal than others…” Well, a nurse cannot afford to think like that. People notice if that sort of thinking creeps in.
When it’s your wife or your husband, your son or daughter, a close friend or even co-worker, you want the hospital and doctors and nurses taking care of them to do their very best to help them get well. It simply cannot matter whether someone is one race or the other, speaks Russian instead of English, or has no money to pay for the care they need.
Grace and blessings
I can tell you we have been the beneficiaries of such care, in ways that absolutely flabbergasted our ability to comprehend the many forces working behind the scenes to ensure our welfare. The least we can do in response to this grace and these blessings is what? Give back in any way we can. Pay attention to those taking care of us. Express our appreciation.
And guess what? Opportunities to reach outcome up more often than you might think. It is true that when you are in a position of most vulnerability, you are best able to share in the pain and challenges in other people’s lives.
Our nurse during Linda’s first night in recovery from surgery was so caring and attentive that conversation naturally flowed to the discussion of family and friends. It turns out our nurse was a single mom whose husband left her for another woman, leaving her to raise her two children alone. She was frustrated by how hard it was as a working mother–also attending graduate school–to meet someone, a man she could grow to love. She had nearly given up hope, she told us. Even the men on the Christian dating services turned out to be less than honorable.
It’s a story quite familiar to my wife who over the years has worked with dozens of families and single moms in her job as a preschool teacher. At one point after checking up on Linda, conversing while she worked, our nurse stopped and stood in the middle of the room, seeming to want to gather herself before moving on to other duties. We’d been talking about how she gave so much time to raise her kids, got them to rehearsals and practices and games. But how it was all worth it in the end because it keeps them busy even if it wears her out.
We talked of God and faith, too. She shared several of her favorite Bible passages with us. We told her we’d recently been in a bible course where we read the entire book in 90 days. “Oh, I don’t think I could do that,” she sighed.
“12 pages a day,” Linda assured her.
I admitted. “I didn’t keep up and had to hustle to finish.”
We encouraged her that all her work as a mom was worth it. That her children would turn out to be a blessing to her for her dedication. “Yes, I know,” she murmured. “But I have had to sacrifice a lot.”
Then she stood quietly in the middle of the room, seeming to contemplate her place in the universe. Standing in front of the privacy curtain and silhouetted by the light from the hallway behind her, our nurse stood and stared across the room, soaking up the relative stillness until she said quietly, “Well, God Bless you guys.”
It’s impossible to know the exact circumstances people face, or how they truly feel. Linda turned to me after our nurse had left and said, “She reminds me of so many single moms I’ve met, just “poured out” from having to do everything themselves. Wanting to be filled up spiritually.”
We met a veritable parade of nurses the following 5-6 days. All types of people and styles of care. Some were talkative. Others were focused and efficient. All played a brief yet important role in our lives. We can only hope that in some small way we give back to these people who daily give so much of themselves. Nurses literally and figuratively rule as far as we’re concerned.
Tomorrow marks seven years since my late wife Linda Cudworth died after eight years of survivorship through ovarian cancer. The diagnosis came as a shock, as did multiple episodes of recurrence. Each time we’d reel from the news, go back into treatment and compartmentalize the best we could by using the phrase, “It is what it is.”
Those last months during the winter and spring of 2013 were confusing because doctors treating her for seizures learned there was a tumor in her brain. I’ve never published photos of her during that last round of radiation treatment because while we made the best of it, snapping pics using my laptop Photo Booth and laughing as the absurdity of it all, it was a strange world we were about to enter, because ovarian cancer was not supposed to be able to pass through the blood-brain barrier. But it did.
All dressed up and going somewhere.
We treated it with radiation and she started a regimen of steroids to contain the swelling and her personality became magnified. She lost native inhibitions about many things. On one hand, that was disorienting, as it ultimately became impossible for her to continue teaching at the preschool she loved. On the other hand, it proved to be liberating as she used those final bursts of steroid-fueled energy to buy a beautiful piece of art. She also stayed up late at night to research and buy a new car even though she abhorred going online. In sum she lived life to the fullest, however manic it might have been.
And that was bittersweet. Because when the steroids stopped, so did her energy. She passed away a few weeks later in the company of her husband and two children. Still, she never lost her sense of humor. After I’d arranged for palliative care in our home, we moved her from our master bedroom to the hospital bed in the living room where nurses and such could tend to her properly. The journey from bedroom to living room was awkward and difficult given her weakened state, but she looked up at me once she was tucked into the cover and smiled while saying, “I thought I wasn’t supposed to suffer.”
On our honeymoon at Waterton-Glacier
Most of that was indignity, and my late wife was a person who believed and abided in dignity in all she did. It was part of her beauty as a person. She also respected propriety, which made it amusing to think back on the fact that I showed up a night early for our first date. “What are you doing here?” she asked. “Our date is tomorrow night!”
She agreed to go out for a short dinner before hosting her parent-teacher conferences at the high school where she taught special education. But before we parted that evening, I got a taste of her naturally biting humor in reminding me that I ought to call confirm a date.
We got to know each other a little that evening and followed up with a hike to Starved Rock State Park. Stopping on a high ledge for a picnic on a mild November day, she broke out a lunch of apple-walnut bread sandwiches, cheese and wine served from a leather-covered flask. That implement was a remnant of her high school hippie days.
Enjoying our festive 4th of July traditions.
We dated four years and even survived a long-distance romance early on when I was transferred from Chicago to a marketing position in Philadelphia. She visited me on Thanksgiving that year despite her mother’s objections, and I moved back to the Midwest the following spring when the company decided to disband the entire marketing department due to misguidance by the Vice President.
That would be one of a few job upheavals experienced over the years, and we survived them all. Our children came along in our late 20s and early 30s. Soon our lives were immersed in preschool, elementary adventures, and all the way through high school performances in music and drama.
We also belonged to the highly conservative church synod in which she’d grown up. The pastor that married us at the time was, however, a grandly considerate and patently open-minded man that once gave a sermon titled, “Do-gooders and bleeding hearts : Jesus was the original liberal.”
Our lives swirled with church activities as our children passed through Sunday School all the way to confirmation, where they roundly passed the tests despite having to choke down conservative ideology about evolution preached by the pastor that had long-since replaced our marriage counselor.
After 25 years we moved up the road to a more tolerant and progressive Lutheran church. It was gratifying to learn that our friends from the former church did not abandon us. In fact without their help and the guidance of one of Linda’s best friends, a woman named Linda Culley, we would not have had as much grace and good fortune in the face of the perpetual challenges served up by cancer survivorship.
At 7 Mile Pinecrest
Now what I like to think about are the camping trips we took to the north woods while dating, and later, when we had small children, we’d spend a week each summer at a humble resort called 7 Mile Pinecrest thirteen miles east of Eagle River, Wisconsin.
Our children paddled around in the water and slipped off to Secret Places in the woods while their father fished in the early and late hours and went for runs half-naked in the pine woods north of the resort, swatting at deer flies the entire time.
Linda and Evan reading together.
At the center of all that family joy and adventures was Linda, whipping up sandwiches and sitting with a glass of wine on the small beach overlooking the lake. That was the only time the Do Not Disturb sign seemed to rise on the Mom Flag.
And when we weren’t visiting or traveling or doing school activities, Linda was immersed in planning, purchasing and planting her garden every year. Her priorities were indeed God, Family, and Flowers.
She was a really good person. That’s what so many friends have told me over the years. I was married to a really good person, and that makes me think of what a close friend told me when he first met her. “This is a good one, Cuddy. Don’t let her get away.”
It is bittersweet and sweet to think about all those years together. My daughter went through our stacks of photos to digitize the images and I’ve waited until today to open it up and pull some memories out to post with this blog. Holding people close to your heart is first and foremost the right kind of pride. I hope this writing inspires you to consider the importance of people in your lives.
And to realize as well that life does go on. She told our close friend Linda Culley that she knew, if she were to pass away from cancer, that I would meet someone again. And I have found love. But it does not mean the years with Linda Cudworth are forgotten. Far from it.
These memories can lift us up. Give us courage to go on. Cherish the life we had as well as the life we have. And that is the right kind of pride as well.
During eight years of cancer caregiving for my late wife Linda, who passed away six years ago this day on March 26, 2013, I grew to understand many things about other people. How some have such a heart for others. How giving they could be. How friends willingly took on chores too difficult to imagine. All of it done without judgment. These things came true in our lives.
There were also mysteries that were beyond explanation and should remain that way. During one period of time when I was out of work to take care of her needs, we sat together at our dining room table and added up the money needed to cover our bills. We’d already paid the $2000 COBRA monthly premium for health insurance. That was absolutely vital or we’d be broke in a minute from a running list of medical bills that came our way. These included chemotherapy treatments and surgeries that cost tens of thousands of dollars. In the days before the Affordable Care Act and protection from pre-existing conditions, clinging to your health care was a life or death matter.
Somehow we made it week-to-week, month-to-month and year-to-year. But sometimes we just turned to prayer for help. So it was that we determined the need for $3500 to cover the rest of our bills. During periods when I had to be out of work to take care of her, I’d hustle up freelance work to cover our bills and more.
But it was stressful. Sometimes we’d be pressed financially, and it was on one of those nights that we added up the bills, said our prayer and got her into bed to rest.
The next morning I came out to the kitchen to make her oatmeal and heard the front door mail slot creak open and shut. Whatever fell through the door made a solid thump on the floor. I walked out to check on the delivery because people were often bringing us food and other requests made through our caregiving website.
This package was different. The envelope was thick and bulging. I picked it up and opened the tab. Inside was a wad of money. $3700 worth.
I broke into quiet tears and stood there looking out the door. Whoever dropped off that envelope and collected that money was already gone. To this day I have inklings about who might have gathered that cash but in many respects prefer to leave it as a mystery. That’s what the folks who gave us the money apparently wanted. We used it wisely and gave a prayer of gratitude in response.
Yes, it’s been six years since my late wife passed away. But the kindness and grace of others that sustained us has never left my mind. I know it never left her mind either. In so many ways the support of others kept her alive during all those years in and out of remission after her initial diagnosis. We drew on that support for strength and hope during periods of both sickness and health. Our children felt that support, and in the ensuing years that remains an important part of our collective grieving process. Last year we held a memorial gathering in her honor. Rightfully so.
She and I met in 1981 and were married for twenty-eight years. Yet in many ways, we were also married to the world around us. It was that bond of vulnerability and hope that drew on the strength of others and became our main source of pride. The Right Kind of Pride.
Losing a loved one is one of the hardest things to experience in life. All signs may indicate that the end of a life is near, yet it is so hard to accept them.
Most typically, people experience the death of parents late in life. There are exceptions of course. Tragic accidents or fatal diseases intervene with the normal cycles of life. For those experiences, the principle need is to focus on coping strategies. Helping people when the shock of death comes too early is a profound challenge. Every single circumstance is different.
But there are some commonalities we all share when it comes to aging parents or grandparents. We know they are not going to live forever. We sometimes see the decline, yet focus on the good signs and hope the bad things hold off as long as they can.
Triggers
Often there is some incident that triggers the process toward actual death. It may be some shift in health such as a heart issue or surgery. Yet something as simple as a fall can undermine a person’s health.
Recently that happened to a close associate of mine. His mother fell in the middle of the night and her equally aged husband did not notice. What followed was a series of stays in different hospital facilities and nursing homes.
There is a harsh reality afoot with people very aged and in a severe state of decline. Hospitals are chartered to help people get better. They reserve the right to determine if that is happening. There are broad patterns that affect these decisions. People experienced with the dying come to recognize whether the trend is toward better health or whether the symptoms of an accident or illness are likely insurmountable.
The protocols of this decision-making can seem confusing to family members or those chartered with caregiving. The legality of prescribing certain medications, for example, is often determined by the prognosis issued by the presiding physician.
Free radicals
Then there are the more radical decisions to consider. Will a surgery help mom or dad survive longer, or is it just a desperate attempt to extend their life?
Meanwhile, the patient sometimes vacillates between wanting all that rigamarole and perhaps not putting up with the intrusions. This can seem like they are giving up, or losing hope. But in truth, some people come to grips with their situation faster than their caregivers.
Yet that’s not often the case with people suffering pain. Their decision-making abilities are directly affected by their pain tolerance. That’s where it gets difficult for the hospital or other facilities to make decisions that please the family. Either the patient gets so doped up from painkillers and can’t converse, or they grow agitated from lack of treatment and just want the pain to end. Even death becomes a desirable option.
Opponents
There are relationship issues to confront as well. A temperamental parent can be a daunting opponent when it comes to end-of-life decision-making. If there are unresolved or dysfunctional relationship issues between parent and child or siblings, the end-of-life process can become complex and tense. Blame gets tossed around. Insinuations made. Guilt enters the picture. No one can find peace or balance. The parent becomes Ground Zero for family conflict.
Usually, there’s one sibling or one person that does most of the steering through an end of life journey for a parent or grandparent. Yet that leadership role can generate friction too. It can happen that parents will play one sibling off the other in order to gain sympathy or hedge the bets. When those parallel decisions work against the medical advice of the presiding doctor and the presiding sibling, things can get really confusing. Or angry.
Palliative care versus hospice
Sometimes medical staff will seek out the primary decision-maker(s) for discussions about palliative care or even hospice. Palliative care is defined as follows:a multidisciplinary approach to specialised medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, physical stress, and mental stress of a serious illness—whatever the diagnosis. The goal of such therapy is to improve quality of life for both the patient and the family.
But quite frequently, palliative care has the goal of keeping the patient comfortable leading up to the actual process of death. When death is likely imminent due to any number of signs related to disease or debilitation, a transition to actual hospice care occurs.
Hospice removes most life-giving supports and acknowledges that the patient is indeed dying. This can be an extremely challenging decision for families to make. But there are good reasons why hospice is entered as a care strategy.
Experience
Having worked with both my parents and my wife in both palliative and hospice care situations, I can assure you that the differences are not so distinct or profound as they might seem. I am fairly convinced that the only reason the terms differ is to ease the transition for family members. The term palliative is designed to help them come to terms with the fact that their loved one is indeed dying. When the wise female physician pulled me aside the day my wife was unable to move from the table where she lay, and counseled me that palliative care was likely the next step, I knew what she was saying.
In my mother’s case, she had been directed home from the hospital because there was, n the doctor’s words, “nothing else we can do for her.” In plain and simple terms, a hospital is medically defined as the place where people go to “get better.” When it is determined by the hospital that a mission of that order is not likely to be fulfilled, families are often asked to move their loved ones to another facility, or to simply take the patient home. Hospitals do not like it when people die under their care. It does not look good on the record sheets.
My mother was consigned to palliative care following an attempt at chemotherapy to treat her pancreatic cancer. The treatment was too hard for her to take. It put her in the hospital for a few days. Then the doctor came by and told me that they were done treating her. She was able to get home and we hired caregivers. All our family visited during a three-day period and she was happily able to see nearly all her loved ones.
But then she had a stroke on a Sunday evening, and by Monday morning, the case was clear. Her ability to swallow had been destroyed. The decision to enter hospice care was defined by that condition. Within a week of entering hospice, she passed away peacefully at home. Her husband and immediate family were there with her. And while it was sad to know that she was gone, there was great closure and peace that came from that.
Hospital business
Hospitals try to avoid keeping patients until they die. It’s simply bad for business. And hospitals are a business. That does not mean hospitals can necessarily avoid death in their patients. Plenty of people die in their hospital beds. Death is simply unavoidable when the human body and mind have had enough trouble dealing with pressure and failure.
Life comes to an end in one of three ways; natural, unnatural or somewhat assisted. A natural death is what we all seem to desire. That’s when people pass away of so-called natural causes. That would be heart failure in many cases, or other organs. There are many ways to die.
An unnatural death is typically the product of overtreatment. That would be too many surgeries in many cases, and not enough energy to recover. From what I’ve read, that process and occurrence is an all-too-frequent occurrence in the American health care system.
Perspectives
I’ve watched my own family members anguish over the merits of yet another surgery for my father-in-law. Deep down I knew it was fruitless. But the patriarch of a family is not something people give away easily. Never mind that he’d already skirted death when he collapsed face first into a pile of sawdust while sawing wood in his own backyard. His wife woke him up that day. But from there, it turned into a series of heart operations, kidney problems, weight loss and finally death in the hospital. None of that was an easy choice for the family to make. It was deemed necessary as long as he was alive, to keep him alive. But whether it was absolutely necessary to keep him alive was the question everyone avoided.
Almost all families face that type of decision sooner or later. No one said dying is easy. But we tend to make it much harder than it should be.
Prayers for dad
My father passed away in a hospital bed six months ago. He had fallen in the middle of the night and broken his hip. His caregiver called emergency for the umpteenth time and they carted my dad off to the hospital.
Everyone knows that a broken hip is a tough injury for any elderly person to sustain. My father already had an injured arm from a previous accident. But mostly he’d had a long time dealing with the effects of a stroke suffered back in 2003. He outlived my mother by ten years and we kept him in his own home with caregivers. The diagnosis to do surgery was his decision.
The diagnosis to do surgery for the broken hip was his decision. I let him make it because even though I was an executor of his estate with Power of Attorney for health care, he was still lucid and capable of deciding for himself whether to live with a repaired hip or die from the effects of the injury.
He lived another four days and saw all four of his sons during that week. Then he passed away quietly in that hospital bed. I arrived on a Saturday afternoon to a room with quiet music playing. His blanched figure with open mouth lay on the hospital bed. I kissed his forehead as I had done many times in fifteen years of taking care of him. Then I knelt and said a prayer next to him even though he was not necessarily a praying man.
I thanked him for his love over the years even though he lost his ability to say it. I said thanks to what I know of God for believing in my ability to take care of my father. It was tough as hell, and definitely worth it.
He was dead, but his memory just as surely came alive in the days that followed. There was nothing medically I could have done to change that outcome. There seldom really is. Death comes because it is meant to be. It gave me peace to know that he no longer had to live without his voice, and his golf clubs, and that wandering spirit squelched by his confinement to a wheelchair all those years. He dealt with it pretty well, and like an SOB at times.
The art of dying
But he dealt with it. And it was our job now to deal with his passing. It all took so long and happened so fast. That’s how death works, after all. And sometimes you should not fight it. That is the art of dying.
There’ll come a time when all your hopes are fading When things that seemed so very plain Become an awful pain Searching for the truth among the lying And answered when you’ve learned the art of dying
But it was stressful. Sometimes we’d be pressed financially, and it was on one of those nights that we added up the bills, said our prayer and got her into bed to rest.
The Right Kind of Pride 