Living with purpose despite or because of health challenges (Part 1)
Courtesy of Paper Lemon Photography
Purpose Person: Dana
At some point, most of us will encounter circumstances that shatter life-as-usual and force us to appreciate the fragile and temporal nature of our lives. These experiences, often related to health, functioning, or relationships, can jolt us out of a mindless focus on petty distractions and catalyze a desire for authentic authorship and purpose in our lives and an appreciation for the poignancy of life itself (Yalom, 1980). This can be one of the small upsides of suffering but these potential dividends don’t come fast or easily, if at all.
I study purpose in life after health-related transitions and have the privilege of learning from people who are walking the path back from purpose disruption to one of renewal. I’ve observed that after a big health change, it often takes a while to find a new sense of purpose and direction because it’s difficult to re-establish the givens of normal life: who am I now and what can I count on. This seems especially so in early recovery and for people who live with the ambiguity and unpredictability of chronic health conditions. The question of how do I re-find myself and my sense of purpose is not a conundrum for the unfortunate few – inevitably, it’s one we will all confront.
To speak to these issues, I turn to someone with real life expertise, my best friend since first grade. People who’ve just met Dana would be surprised to know that she deals with serious health issues, in part, because she’s so smart, funny, and engaged in life. Here are some examples of what I mean. Dana has trained (and given away) two service dogs with Helping Paws since retiring from teaching middle school English. She helped start a non-profit for sustainable and equitable housing, environments, and development in her community. She is also a public education advocate, serving on the Northfield Legislative Action Committee. She’s been a caregiver for both parents and is an invested grandma, wife, mom, sister, aunt, and friend. One of her poems is on the sidewalk in Northfield and did I say, she’s super funny? Dana also spent a year recovering from paralysis caused by Guillain Barre Syndrome and has lived with polycystic kidney disease for much of her adulthood.
In the comments that follow, Dana shares how these circumstances have mobilized her direction. She has something to say to all of us, especially for those who are trying to find a new beginning after health upheaval.
How about you? What has propelled you forward following periods of hardship? How might you use those experiences to move you forward now?
Onward!
Source: Yalom, I.D. (1980). Existential Psychotherapy. New York: Basic Books
Reflections from a Purpose Person: Dana
Mary: Watching you navigate in daily life, I am impressed by how you take on important and meaningful endeavors rather than waiting around for the other shoe to drop health-wise. Tell us about how you got this way and how you maintain this forward orientation even as you have a chronic health condition that sometimes causes discomfort and must give you pause in terms of the ever-present possibility of a health downturn.
Dana: Let me go back to when this started.
Up until the day six Mayo Clinic doctors met with me to explain my diagnosis, I’d been able to rein and corral the events of my 35 year-old life with determination, feistiness, and a lot of luck. I sat surrounded by a team of very serious nephrology specialists, who quietly discussed my scan and gave me a scientific overview of polycystic kidney disease (PKD). I caught only snippets of what they said. “We recommend no more pregnancies. There are many complications with this disease. A majority of PKD patients need kidney transplants by age 50.”
No matter how gently bad news is presented, such watershed moments are traumatic. A choking panic washed over me. For the first time in my life, I had a problem that I could not chase down, lasso and whip into shape with can-do spunk. I was on a runaway horse, galloping toward a bottomless abyss. The doctors’ concerned sympathies only added to my distress. I told my medical team, “That is NOT my scan.” The sheltering tree of denial was my first stop on the journey.
The scan was, indeed, mine, and the cysts growing inside my liver and kidneys were as much a part of me as my heart. In a few beats, my world and self-perception shattered. I had a diagnosis of a painful, progressive disorder that would steadily damage my kidneys, liver, and circulatory system. And the most difficult fact to swallow absolutely broke me. PKD is a disease that keeps on giving, and my sweet daughter had a 50 percent chance of inheriting it.
Only a few hours before, I had walked through the doors of Mayo Clinic thinking I was an exceptionally healthy woman with a few mysterious medical problems that could be easily addressed. I walked out the Mayo doors the very same day changed to the core. I had a scary, incurable, progressive genetic disease, the kind I thought only other people had.
On the drive home, tears obscured my view, and I pulled over. I sat in a bleak parking lot attempting to catch my breath and process a little of what I had just heard. Somewhere along the way I had missed the memo, but now I comprehended the obvious, abhorrent truth. We are all born with a death sentence, and I was not exempt.
I had always been strong and robust. I didn’t smoke, drink, or dance with strangers. I backpacked. Climbed mountains. Biked. Canoed through the BWCA and portaged from lake to lake with heavy loads on my back. I had assumed that like my grandmothers, my sturdy constitution would allow me to live and thrive well into my nineties.
My body had betrayed me. No! An unseen enemy had declared war on my body, mind, and spirit.
As the weeks progressed, sorrow held an unrelenting chokehold. I studied my darling 6 year old daughter and wondered if I’d live to know her as an adult. I observed elderly couples strolling hand in hand down sidewalks or dining in restaurants and wondered how many years of marriage I’d experience. I didn’t want swank anniversary trips or wealth. I wanted hours, days, and years of a marriage where Ken and I had the luxury of doing plenty of nothing together.
Swarming fears broadsided me unexpectedly, gnawing at my confidence as I swatted them away in vain. I was wrapped in a palpable buzz of dread. What if I died young? What if I suffered but didn’t die? Had my daughter inherited the defective gene? Would my illness drain our finances? What if I became a burden to my family and friends?
How would I play this hand I’d been dealt?
At last exhaustion led to uneasy surrender, and I simply let the feelings fly. They flapped noisily around me until ever so slowly, they flew low and landed. I gingerly approached my collective worries and attempted to give some order to the unruly flock.
Mary: What seemed to change for you after you hit that point of surrender?
Dana: My first big step forward was the realization that PKD might not actually kill me. After all, there are lots of ways to die. If I could inherit a random genetic disease, I could just as easily get hit by a meteor or attacked by venomous snakes, and all the energy spent on PKD speculation would be in vain. It’s comical to be comforted by such morbid thoughts, but chuckling at my mental gymnastics as I conjectured the plethora of boulevards that could lead to my demise took away some of the power PKD had over my life. Laughing hard again felt good.
I opted to limit the time I spent pondering death by PKD, or any other worry for that matter. To avoid launching myself into debilitating spin-outs, I allocated 15 minutes daily to fretting. I felt an immediate sense of relief, and space opened up to hold other thoughts.
Mary: It seems like you had to come to grips with the fact that PKD would be with you 24 hours a day until your death. How did you figure out how to go forward with this unwanted but very present companion in your life?
Dana: Mary Englebreit has a poster I adore. A peeved little girl scowls out under the words: “Everyone is fighting a battle you know nothing about. NOT ME. I’m complaining every chance I get about my battle. EVERYBODY knows about it.” The struggle is real!
How would I avoid self-preoccupation while validating my reality?
I was wandering through the Bible one day, when 2 Timothy: 7 caught my attention. “God has not given us a spirit of fear, but a spirit of power, love, and self-control.”
Since my diagnosis, hope was elusive, but as I pondered the words I felt a small bubble of it rise up. It wasn’t a superficial, unattainable hope like buying a lottery ticket and dreaming of how to spend the winnings. It wasn’t a hope to have my old life back or even a hope for healing, though miracles sometimes happen. It was a yearning to live my days without crippling fear, and this passage seemed to say it was possible. Could I really travel the road of chronic illness with confidence? Could I have an approach that would balance a focus on others (to propel me out of brooding self-absorption) while also tending to my own needs? Could I learn to love myself and my broken body? Could I sit at the negotiation table with PKD and declare a truce? Could I stop fighting it and embrace it as a teacher?
This verse seemed to say that I was designed with a capacity to develop the muscles of power, love, and self control. Might building those muscles create a protective wall that would prevent fear from washing over my life and obliterating me? What did I have to lose if I put this verse to the test?
I decided that to the best of my ability, PKD would not control me. I would control it. I had choices in my response. With power, love, and self-control it seemed possible to both lose myself in the joy of serving others and tend to my health.
Mary: Talk more about how the realization that you had choices shifted things for you.
Dana: Up until my diagnosis, I often shot from the hip with a free-spirited “ready-fire-aim” approach. I felt I had unlimited time to perfect hitting the target, so I didn’t bother much about the misses. PKD propelled me to be more deliberate, and power, love, and self-control helped move me into a thoughtful “ready-aim-fire” tact. Strategic days with flexibility anchored me in a stance to hit the mark with greater precision. The bullseye: to create a legacy of purposeful endeavors while also prioritizing unapologetic, tender self-care.
Author John Green says you can’t pick the painting of your life, but to some degree you can select the frame. I made the verse from 2 Timothy my mission statement and matted the painting of my life with the words. The frame around the mat comes from Psalm 16: “My boundaries have fallen in pleasant places.” This is the litmus test I use to make sure my energies are being harnessed in joyful, fruitful pursuits and relationships.
I’ve spent the last 30 plus years since my diagnosis striving to incorporate power, love, self-control, and pleasant boundaries into each day. Sometimes I fail miserably. But if I hover over the last three decades and observe the big picture, I can honestly say that fear hasn’t dominated most seasons. With God’s help, making room for power, for love, and for self-control in my thoughts and behaviors has brought peace and purpose.
I certainly haven’t grasped the purpose of suffering in this broken world. But I can say that my suffering has been an impetus for giving my life deeper meaning.
When I began my walk with power, love, self-control, and pleasant boundaries, I regarded them as individual silos. An interesting phenomenon has occurred, though. Rather than being separate entities, they have melted into an amalgamation, and it’s hard to discern where one starts and another begins. They are gorgeous interwoven yarns in a protective shawl wrapped tightly around me.
Mary: You’ve offered so much for us to think about, Dana, and I so appreciate your reflections on your story – one that continues!