Into Each Life. . .

It started innocently enough. I visited my granddaughter at college in early September—she’s the one that called me every day during the pandemic and the third of my four grandchildren off to college. The Friday after arriving home, I developed a horrific headache. I thought it would resolve quickly—sleep it off. But it lasted through September. Then came October. It would go away over night and come on quickly in the morning. Needless to say, I imagined the worst—tumor (even though the pain was mostly in my back and neck), long COVID (that didn’t occur to me until well into October), brain inflammation, Parkinson’s—a different catastrophe every day.

I saw an ENT doctor. Sinus? Allergy? I was clean as a whistle. As October wore on, I became incredibly anxious. One Sunday, Jim, my husband, had to talk me down as I learned to be anxious about being anxious—not a good thing.

My doctor did his best—a neurological test was perfect as was my blood test. He prescribed a pep talk—he believed in me; referral to a mental health professional; and an antidepressant that I was too anxious to take after reading about the side effects on the information sheet that came with the prescription.

In some deep place, I knew this was “all in my head” but anxiety overrode rational thought. Meanwhile, I was on a two-month waiting list for my doctor’s referral to a therapist, and everywhere else I called, all I heard was “We’re not accepting new patients.”

So I did what any good academic would do, bought and read books and scanned websites. There are some great resources out there, people committed to helping the suffering. One is Dr. Howard Schubiner, in Michigan, an authority on mind-body syndrome. By now I’d diagnosed myself. I bought the book and did his eight-week program. It helped. I also did PT, which also helped, but some days my neck and back felt on fire, which fed the anxiety.

About Thanksgiving I started feeling better, so I went ahead with cataract surgery. Maybe that would help. It didn’t, although the doctor called the results “amazing.” I was thrown into a new panic during my recovery and had difficulties getting new glasses. I postponed the second eye. 

Muddling through Christmas, I faked it, while inside feeling woozy. I started carrying hiking poles because I was afraid I’d fall—then, another perfect neurological test. “Your balance is amazing.” I wanted Ativan, but all I got was a lecture about how bad it is for someone my age—really? I should live in a constant cold shower (one of the recommendations for lowering anxiety) because there’s a correlation between Ativan and cognitive decline? Fortunately, my gynecologist wasn’t so opinionated, although I didn’t take it often—it made me enormously tired.

          In January, my turn with the psychologist finally came up—and she cancelled! A week later, I did my first virtual appointment and liked her immediately—the luck of the draw worked in my favor. She’s been supportive, available, responsive, and skilled.

          Like any good consumer, I turned to Facebook advertisements—once you look at something, they never stop coming in your feed. I now own a sunlight, a device you hold in your hand to help you sleep, a neck massager with heat, a bra to keep my shoulders back, my own tens device, a device for stretching your neck, a Theracane, and lessons in loosening your fascia from Daily Om. American Express loves me.

I’ve learned a lot about pain—that it really is in the head mostly, that childhood trauma and other traumas settle in the body and the brain finds pain pathways. But the brain can relearn, too. People do get over chronic pain even when there’s a basis in the body. Two people can have the same problem, and one will have pain, while the other will not. I learned about an app called CurableHealth.com. It’s a program started by young entrepreneurs who had struggled with chronic pain and tinnitus. It saved me on many days—podcasts with experts, information, meditations, writing exercises, and brain training—all for $69 a year. Another is the DARE app for anxiety.

Whew! It’s been a journey with good days and bad days – and I am not alone. The National Council on Aging says that between 3% and 14% of older adults suffer from anxiety and that estimate is based on reported cases only. Older adults have more problems with medications, since they are often taking other medications. My doctor prescribed three different antidepressants, while also saying “There is no pill for this.”

That said, I’ve learned that there are supportive friends, spouses, and family; there’s an abundance of YouTube videos about reducing anxiety and meditations; there are apps for meditation and helpful books.  These offer “solutions,” which, mainly advise “accept it and get on with the business of living and what matters to you”. Easier said than remembered when you awaken at 4am in a sweat, and you don’t know why.

My heart goes out to all chronic pain and PTSD sufferers, as well as those with Generalized Anxiety Disorder, the most common in older adults. Doctors can prescribe band-aids but getting to the root of the problem takes hard work and support. I see many articles in newspapers about the lack of mental health services for every age and the importance of having insurance coverage so people can access these services. I’ve experienced it firsthand and as one of the lucky, with insurance and now a qualified counselor.

In my bookcase directly in my sightline from my desk is a book entitled This Time Next Year We’ll Be Laughing. That’s my dream. It keeps me going as does an affirmation to get on with the business of life.

Possibilities

A person standing on a balcony

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I Dwell in Possibility

Emily Dickinson 

Joachim Trier’s movie, Worst Person in the World, is about a young woman exploring the possibilities in her life looking for that one true passion. It’s a universal story line—the quest–yet as my friend and I walked to our cars after the movie, all I could think about was the line “I no longer have a future” (spoken by one of the other characters). “It’s exactly how I sometimes feel about getting old.” I told my friend. “Like I no longer have a future.” She agreed that that line had stood out to her, too.  We walked around the corner to our car, parked on a street of lovely old mansions near Lake Michigan in Milwaukee. The early spring sun brightened the landscaped lawns and melting snow. 

“Take these gorgeous homes,” I said. “I’m never going to own or live in one. Twenty years ago, I would have walked by them and daydreamed about living in one. But that’s never going to happen.”

My friend noted that one of the harder realities about getting older is the realization that the range of possibilities is shrinking, if only because we’re running out of time—not to mention that most of us have more money going out than coming in. 

A few weeks later, I visited a college with my daughter and granddaughter. I heard my daughter say, “Gosh, I wish I could go back and do college all over at a place like this.” Her wishful thinking reminded me that there’s a universality to dreaming about what might have been or what might yet happen. The fact is, however, we get only one life. She is through college, and I’m never going to own a mansion in Milwaukee. But does that mean that I have no future?

I could still move somewhere new. . . or maybe travel. Is this why we older people like to travel? We have time and we’re looking for novelty? For my husband, the fun is in the planning. He gets to run through all the possibilities. For days before we go somewhere he changes the itinerary. When I saw Frances McDormand in Nomadland, it struck me that though she didn’t have any money, she traveled and was open to possibilities, too. 

This morning I asked myself what I like best about being retired. The first answer that popped up was having the time to contemplate and work on myself (a blog will soon follow on this). Richard Rohr in Falling Upward: A Spirituality for the Two Halves of Life, argues that in the first half of our life, we build and identify with a persona—I’m an educator, I’m a mother. Others are policemen, teachers, professors, plumbers, community activists—however we see ourselves. We work hard to create and maintain this persona, but underneath is an authentic person. In the second half of life, however, we have time and inclination to turn inward and explore that person, who we are at our core. That’s a powerful and challenging possibility.

In a recent podcast of No Stupid Questions on NPR with Stephen Dubnar (Freakonomics) and Angela Duckworth (professor at U Penn, well known for her work on grit) take on the question of What’s so Great About Retirement? There are many good reasons to listen to this podcast (or read the transcript), but the one that stood out to me was Duckworth’s emphasis on goals or purpose:

She describes her father, a retired chemist, who upon retirement announced that he didn’t want to do anything, and he proceeded to get up in the morning, have his coffee and his breakfast, shuffle over to the love seat, sit down, take the remote control, and turn on the Weather Channel. She believes that his choice to spend his retirement this way made him profoundly unhappy (Both Karen R. and I believe she should have looked closer instead of judging him). Duckworth notes:

I have a theory of happiness, which is very simple. I think people pursue goals spontaneously at every age. Whether you’re 4 or 84, you have goals. You have things that you want to accomplish. I think, actually, the greatest unhappiness there is, is not to have goals at all. 

As soon as I heard this, I knew I was back at my favorite rabbit hole—purpose. Maybe having purpose is the way we counter the perception that we have no future other than aging. Maybe I need to stop raging about it and look more closely. Purpose, in the second half of life, may be drawn from an inner imperative. That requires the very inner work that Rohr writes about, and it doesn’t have to result in a big world changing purpose/imperative. Instead, it can be a commitment to the little p’s in front of us daily

Two of my little p’s, as you’ve heard me say before, are tutoring and rosemaling. On the surface they seem like time fillers, but I made these choices after self-examination, not because I needed a job, or wanted to pursue a career, or whatever. Tutoring reflects my joy in teaching children, of being in schools, and in observing that fascinating process called learning. Rosemaling reflects a search for my identity as part Norwegian and my love of making things. While perhaps not soul work, these two choices came from an exploration of who I am and what I love doing. And finding them screams “You do have a future right in front of you, Karen!” Maybe it’s not a mansion on Lake Michigan, but the fruits of inner work from where I stand today, are every bit as rewarding as building a career was when I was younger. It’s true, I won’t get another life, but meanwhile, having found some little p’s, I wake up most days engaged in the one I have.

A person drawing on a piece of paper

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Welcome to the Club

The Clubhouse

I wake up from pleasant dreams that I can’t remember, but I do know I felt good in them. Slamming awake I realize that it’s still there, the reality of my life. My husband, Jim, has a chronic condition that will require care the rest of his life.  Currently, it’s acute and my days revolve around it. I eat breakfast, not only standing, but taking a bite and then doing something that needs doing before the lymphedema nurse arrives. I haven’t showered, but the dog’s been walked, I’ve tidied, and I’ve thrown a load in the washer. This is the life of a caregiver, disjointed and always on call.

I am not alone in my call to give care, indeed, having joined a club that welcomes all members. Nearly 42 million adults in the US care for elderly parents or friends, with three out of five of these, women. The average age of caregiving recipients is 68.9 while the average age of caregivers is 49. I’m outside the norm on that one. But I’m not outside the norm of a 20 hour work week for caregivers (See https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf.).

I’ve been thrust in the roll of caregiver four times in my life, and each experience was completely different. Context matters, who you are taking care of matters, your life at the time matters, the malady matters, how long the caregiving will go on matters, and your attitude matters. I suspect this is just a minimal list of all the permutations. For now, let me tell you a little about how caregiving has impacted my life. Maybe others will be inclined to share their experiences.

Two thoughts dominate my internal monologue. The first is how long will this last? Will it consume my entire retirement? There’s anger behind this thought, and I don’t like that in myself. But I’m not only angry. My second prevailing thought is compassion. Someone I love is coping with pain and the knowledge that his life will never be the same, that many of his favorite ways of spending time are gone. Probably toughest of all is watching him cope with the knowledge that this recurring illness is a harbinger of the end of life.

My first introduction to caregiving was when my mother, Margaret, was dying of kidney cancer. My two sisters and I agreed to do two-week stints to help her and our stepfather. I went first. It was heart wrenching to see her in pain all the time. Her cancer had spread to her bones, and she lay, mostly moaning in pain. A strong painkiller patch deadened some of her pain, but she was also in pain about dying. “I’m not ready,” she told me. “I wanted more time.” She never talked about how she would use more time. She knew she wasn’t going to have it.

My mother lived three months from those first two weeks when I cared for her.  I never had a chance to care for her again. When I returned home, my second husband, Gary, was diagnosed with pancreatic cancer. I was to be a caregiver to him instead. Caring for my mother felt like a loving responsibility. I was to quickly learn that caring for a husband whom you love very much is a completely different experience.

Gary lived fourteen months from his diagnosis of cancer. We had a mix of good and bad times, and I never resented caring for him. During the hard times, he was extremely cross from his pain—understandable, but still difficult. During the good times, we mourned the loss of our future together. I was with him every step of the way. A part of my heart was broken when he died. A wise counselor has taught me that within the brokenness is the memory of a man I dearly loved. I can hold that memory and go forward with my own life.

Seventeen years after Gary died, I met Jim, my third husband, whose own wife had died of cancer. We were going along nicely, forgetting how life can turn on a dime. Over one Labor Day weekend, he developed sepsis and went into septic shock, almost dying. We later learned it was from a perforated ulcer. When he came home from the hospital, I was back in the club. What I didn’t expect were the demands of helping someone who’s in great emotional turmoil from the aftermath of the disease itself—depression. We muddled through, not realizing that chronic edema, a consequence of his illness, would create the ideal conditions for another bout of sepsis three years later.  

So here I am again, a fourth time, which I sense will be indeterminate. I must say it feels different. Two days ago, a nurse bluntly said to us “It’s not edema, it’s lymphedema, a different condition. And you’ll have it the rest of your life.”  She kindly didn’t add, “Get used to it,” but it was implied.

Once again, those same two thoughts haunt me—what will happen to my life? Will I be able to do the things I enjoy? Will I ever be able to travel again? And what about my writing? Rosemaling?

Then there’s that second haunting thought about his suffering and fears. I feel challenged to alleviate these and help him go forward. I also feel great sadness for him. Am I up to the challenge?

Susan Allen Toth wrote an excellent memoir, No Saints Around Here: A Caregiver’s Days,  about caring for her husband who died of Parkinson’s disease. She writes:

“So much.” I think that simple phrase could easily be the motto emblazoned on a caregiver’s shield. Love, pain, courage, endurance, loss. So much, so much.

We caregivers are a club. We don’t have to feel isolated because we are in the company of caregivers all over the world, not to mention the circle of help from home nursing services, friends, and family. And we have love, the foundation that helps us go forward no matter how uncertain the future may be. As for me, it’s early, and doggone it, I will do my utmost to take care of both Jim and Karen. If there’s one thing the caregivers club has honed in me, it’s determination!

Retirement During a Pandemic

Garden in July

In the middle of July 2019 I announced my intent to retire at the end of June 2020; nearly one year in advance.  Some people thought that time frame a little excessive.  Would I not be considered a lame duck for the entire year?  What would this mean for my ability to lead?  Yet I know my boss, the Superintendent of Schools, appreciated the long lead time.  I was a department Director for a school district and sat on the Superintendent’s cabinet.  This gave him plenty of time to find a replacement. 

I had a plan for winding down my time in the school district.  Get as many projects as I could completed (or at least underway) before I left.  And start helping my husband with his business.  Things were moving along nicely.  I was very productive at my job while also helping my husband deliver in-person workshops around the state on weekends.  I was a little overwhelmed but feeling good. 

Then came March 15, 2020.  That was the day the Governor of Minnesota announced that, due to the COVID-19 pandemic, the state was going into lockdown and school districts would start planning for distance learning.  Students’ last day of in-person school would be March 17.

That changed everything. For everybody.

For me, as a school district employee, that meant stopping everything I was doing and refocusing on distance online learning and childcare for essential workers.  It meant many daily meetings (virtual, from home), onslaughts of emails, sifting through pages and pages of Department of Health and Department of Education guidance that changed daily, checking in with my staff, checking in with others in my field, all while still trying to move some projects forward with the hope that school would reopen in the fall.  It also meant that my husband’s in-person workshops (and therefore his business) came to an abrupt halt.  Not that I would have been able to do them anyway – I had to work on weekends as well. 

This went on for three and a half months – right up to June 30.  Then on the morning of July 1, I woke up to – nothing.  It was jarring to say the least.  Don’t get me wrong – the weight of the stress lifted from my shoulders made me feel I was floating on air. I was happy to shed that weight.  Yet I pride myself on being productive and I didn’t have any idea what to do. 

Do – it’s a small word with a huge amount of baggage attached to it – at least for me. Does gardening count as doing? Does reading a book count as doing? Does cooking meals count as doing? Does going for walks count as doing? Does sitting and contemplating my life count as doing? Does it count as doing if I’m not earning money?

That last question gets to the heart of my dilemma.  I have been a consistent earner since I got my first job at age 15, nearly 47 years ago. I took only four weeks off for each of my kids. I’ve never been laid off.  I work; I earn money. That’s how I see myself. That’s been by design.  My dad died leaving my mom a widow at age 53.  She had not worked for pay since she was pregnant with me. Even though he left her with enough money to take care of herself, it hit me that it might not have been that way. What if he hadn’t left anything, and she had not been able to take care of herself?  I vowed that I would ALWAYS be able to financially take care of myself and my family.  I was 23 years old.  And I fulfilled that promise to myself.  The problem is I didn’t make any promises for what I would do in retirement.

It’s taken me nearly three months to start cutting myself a little slack.  After all —we are in COVID times. The retirement life I visualized is not viable —at least for now.  It’s time to start visualizing something different and, possibly even better. We are in a period of flux where things are changing for everyone. I can use this time to my benefit.

The concept is called liminal space. “The word “liminal” comes from the Latin root, limen, which means “threshold.” The liminal space is the “crossing over” space – a space where you have left something behind, yet you are not yet fully in something else. It’s a transition space.”  (Alan Seale, Center for Transformational Presence)  This time of pandemic could be considered a very long liminal space for me, and for everyone else.

It’s time to leave behind the idea that I need to earn money for money’s sake. Financially, my husband and I are in a good place.  Between my pension, his Social Security and our savings, we can take care of our basic needs and then some.  (Although I will admit that we need to earn money if we want to live an exciting life of travel – when we’re able to travel again.)

It’s time to explore what it would look like if I were truly doing something I loved to do.  That means trying new things and further exploring familiar things. And it means shedding old ideas of what it really means to be productive and unpacking the word “do.”

When I was 23, I didn’t think to make a promise to myself for what my life would look like when I retired.  And why would I?  It was so far into the future.  Now the future is here. One of my favorite sayings is “When is the best time to plant a tree?  20 years ago.  When is the second best time?  Today.”  So today I make a promise that I will open my mind to the possibilities of what an actualized life really means for me.