“Pain is inevitable. Suffering is optional.”
Haruki Murakami, What I Talk About When I Talk About Running
I recognized the look on his face. I’d seen it two years earlier when he was a healthy long-distance runner. This time, my husband lay on a gurney just outside the operating room, waiting for emergency surgery.
“Everything’s going to be fine,” I assured him. He was confused, smiling and unable to grasp the severity of the situation. “A hematoma developed on your spine after yesterday’s surgery. It has to be removed. I’ll be here waiting.” I squeezed his hand, though the hematoma meant he had no feeling below his neck. “I love you.”
Kevin looked at me with that same far-away, vacant grin I’d seen before, dazed and immobile, oblivious to nurses working around him. “You’re my one true love,” he said as I rubbed his chemo-bald head. “And you’re mine,” I replied.
“Oh, that’s good to hear. Sometimes I’ve wondered.”
The first time I saw that look was at the finish line of the Twin Cities Marathon in 2007. It had been his obsessive goal for years, and Kevin undertook a rigorous training regimen, leaving our house by 5 a.m. every weekday morning, 8 a.m. on Saturdays, with runs becoming increasingly longer until he was gone for hours at a time.
But even that training hadn’t prepared him to run 26 miles in 85-degree heat. Waiting at the finish line, I watched a woman receive oxygen; another was rushed past on a stretcher, being intubated. Kevin barely made it across, collapsing into a chair, confused this time about where he was. I have a photo of him in that chair with his brother, a better-trained runner. In it, Kevin has the same innocent yet distant smile I’d see years later in the hospital. His body, overheated and deprived of oxygen, had begun to fail. Thankful that he survived, I felt the resentment I’d built up during his training dissipate.
In the time since my husband’s death from squamous cell carcinoma, I’ve come to realize that I was his caregiver for many years before his cancer diagnosis. The year after the marathon, just before cancer, we began couples counseling, hoping to stop a possible separation. The imbalance of emotional effort took an intolerable toll on our relationship. I felt isolated in my marriage, knowing that something was off, tired of being the nagging wife, yet unable to fix it. I knew we loved each other, but our inability to understand how differently we each processed information was painful. It kept us in our separate corners, waiting for the next round, frustrated by the other’s actions and inactions. As a young, newly married couple in the mid-80s, neurodivergence wasn’t in our vocabulary; it never occurred to us that we did indeed process information, including how we handled the things we loved to do and the things we had to do, in vastly different ways.
Kevin’s intelligence was a big part of his attraction. But his persistent inability to remember simple directives or complete a to-do list was maddening for me. At first, I wrote it off as him being the “absent-minded professor” and even found it endearing. He’d spent his life being told he was bright but lazy, ultimately a loser who’d amount to nothing. I still remember the disbelief I felt when he told me stories of nuns in his Catholic school who punished him and wanted him held back. Through our early dates where we discussed everything from the comedic timing of the Three Stooges to Central American politics, to the economic instability caused by trickle-down schemes, to the musical genius of Joe Strummer and The Clash, I only knew him as one of the smartest and most articulate men I’d dated.
My belief in him, my naïve unconditional love, and his ability to brilliantly compensate, all allowed him to become successful, overcoming some of that earlier emotional damage. Though he rarely spoke of feeling he was different from other people he encountered, he clearly knew he had what I came to think of as struggles with memory and social cues. He developed an elaborate calendar system and constantly carried a spiral notebook, writing notes of conversations and to-do lists. When the Franklin Planner became ubiquitous in the 90s, he was an early adopter, having used a similar homemade version for many years.
Kevin worked in supply-chain management for automotive companies and, when you’re responsible for getting thousands of parts to multiple locations exactly on time—not a day early and certainly not a day late—it was imperative that he never forget details. He knew he wasn’t like his counterparts who simply remembered deadlines, meetings, and pricing quotes. He knew he needed workarounds and coping mechanisms.
Those mechanisms came at a cost. Undoing childhood trauma and constantly reinforcing new ways of thinking was hard work. Functioning without a diagnosis—since no one really knew what was happening to him in the 80s—we constantly teetered on the edge of arguments. Once we married, I felt an even greater sense of responsibility. I wanted him to be successful so that we could be successful. Yet our differences in thought processes and communication felt like a constant and wide breach between us. I would ask him on Monday to do something on Thursday and, by Thursday, not only was the plan ignored, he often had no recollection of our conversation. I wondered if my friends received such frequent apologies from their partners.
Having children added to the frustration, especially when I saw so much of Kevin in our son. Though ADHD became a better-understood diagnosis around this time, we never considered our son to be neurodivergent because he would quietly play for hours with Legos, or curl up and read a book for most of the day. Because we misinterpreted the “hyperactivity” part of ADHD, we overlooked the entire possibility. Just as I started thinking about ending our marriage, our son received his ADHD diagnosis, one that came along with a diagnosis for his father. “You know, ADHD is genetic, often from the father,” the psychologist said, answering many questions I’d had since meeting Kevin, and giving us a reason to work on our marriage again. We bought books like Driven to Distraction and Taking Charge of ADHD. Kevin read them and found himself within their pages. Finally, things began to make sense for all of us.
One of the biggest similarities between my husband and son was hyperfocus. It compelled them to spend hours doing what they loved. Yet doing homework or housework was nearly impossible for them. In getting Kevin’s diagnosis, I saw how differently he had always approached activities he loved, versus tasks he had to complete.
I came to understand that, rather than hobbies, Kevin had obsessions.
He dove into each new pursuit as they took up space in our home (a home we’d extensively renovated during his construction phase). They removed him from our relationship and day-to-day tasks. His attention to individual pursuits and inability to understand my frustration often left me feeling ignored.
Interests would result in stacks of books, equipment, and groups to join. He tracked the mileage rates of our cars, keeping a detailed log of every gas purchase and oil change. There were several degrees—first his double-major BA, then an MBA, then plans for a PhD, then gardening and food preserving, then beer brewing, and, for all the years I knew him, running.
Waking up from his alarm, he’d change into gear, toss pajamas onto the floor (see Monday-Thursday conversation above), then go for a 2.5-miler around the neighborhood. Every day, regardless of whether I had early work meetings, or our kids needed help with school projects, or the dog was sick, his focus was only on getting out the door for his run. It was a big part of what drove us to therapy. How could he be oblivious to all that needed to be accomplished on a given day? How could he always choose hobbies over his family? Why was he so selfish? One of the earliest and biggest lessons for me was understanding that ADHD isn’t personal. Kevin wasn’t doing these things to anger me.
My current therapist recently asked if I wanted that divorce we were heading toward many years ago. “No,” I replied. “I wanted Kevin to recognize my feelings and fix things. Then I realized it wasn’t a matter of fixing but of understanding, for both of us.” We created spreadsheets of tasks; he took on grocery shopping and paying bills, handling both tasks very differently than I did, something I also had to accept. I returned to school to achieve my dream of writing and staked out time to pursue things other than housekeeping. We each worked at being more empathetic.
One of Kevin’s greatest moments of understanding came in our couples counselor’s office when he vocalized his frustration with our son’s behavior. “How can he forget what we remind him of every day? Why does he challenge everything we ask of him? I’m sure he’s been untruthful,” he said, incredulous.
“Do you not understand that I’ve been asking myself those questions about you for the past 20 years?” I responded.
I watched his reaction and saw the pain come over his face. No, he had never realized how, for me, this was round two of raising a neurodivergent person to adulthood. Even harder was knowing that a lack of understanding through his childhood had strained family relationships and done significant damage to Kevin’s self-confidence. Seeing this damage, I felt it imperative to make our child feel supported. My own confession in the therapist’s office was when I admitted, “I’m not a good ADHD wife, and I’m a worse ADHD mom.” But we committed to keep trying.
Then Kevin found a lymph node in his neck that felt like a marble. A biopsy was followed by surgery, then eight weeks of chemotherapy and six weeks of daily radiation. Nine months later, it returned to a sinus cavity. From there, it spread to his lungs and spine. In the midst of repairing, the irreparable happened.
The isolation and frustration I felt as a caregiver to a partner with undiagnosed spectrum challenges paled compared to cleaning vomit, administering injections, and holding him while he shook and wept. The former was frustrating yet manageable; the latter was heartbreaking and terminal. Just as we began to make our marriage balanced, to recommit, understand, and accept each other, I became a different kind of caregiver, this time knowingly and willingly. Eradicating cancer became our collective obsession, our mutual marathon. Yet it returned the scales of our marriage into this uneven space.
When Kevin looked at me from that gurney outside the OR (a situation from which he would never recover, the surgery prolonging his life but leaving him quadriplegic) and admitted that he had doubted my love, I understood how the roles we’d settled into for 25 years had permeated our marriage, leaving me feeling estranged and him feeling responsible for challenges that disappointed me. I also knew we were running out of time to fix it.
One of Kevin’s favorite books was What I Talk About When I Talk About Running. In it, the writer Haruki Murakami posits that writing and running are obsessive solitary pursuits that drive their practitioners to do more, win a race, or finish a manuscript. As Murakami completes his first 26-mile run from Athens to Marathon, Greece (like Kevin, in potentially fatal heat), he falters and feels his mind shift from anticipating success to fighting against certain failure.
At the end, he feels only relief that it’s over. After running marathons, he realizes that his mind will always feel this way, an indication of the toll on the human body. Eventually I understood that Kevin’s daily run was a way to ensure he got started each day despite his ADHD. “Without that first step, I’d never get out of bed,” he once told me. Seeing how he had successfully coped without a diagnosis, creating his own ways to level the playing field, I came to have a true sense of admiration for all he had endured.
Kevin read and re-read Murakami, highlighting passages, relating to the commitment to daily practice, but struggling to understand the connection to writing—my love. He didn’t realize that having dedicated time to write was the same as feeling compelled to improve one’s race time. I read the book and understood: I process life through writing and need regular practice to improve my skill, just as he did. And yes, I resented that I had to eke out time to write because I couldn’t ignore the responsibilities that never appeared on his radar. Finally, having an ADHD diagnosis and learning what it meant to both of our lives allowed us to begin a relationship that focused on equality for each of us to pursue what we loved. If we’d just had more time.
Could our marriage have survived when we wanted to pursue our individual, solitary interests along with navigating our neurological differences? Kevin’s death four months after the surgery left that question unanswered. I believe the caregiving I provided throughout his illness erased doubts he had about his being my one true love. Yet we never had the opportunity to fully understand what it means to make and support commitments to ourselves, our marriage, and each other, equally, despite our different approaches to day-to-day living. Just as we came to understand what it would take to get past the challenges that had infused our marriage, we faced a challenge that was insurmountable.
Now, 14 years after Kevin’s passing, I still feel cheated out of the time we could have spent understanding and valuing each other’s differences and mitigating the challenges from our marriage. I know it wouldn’t have always been easy, but I believe we were getting it right. Today, watching our son flourish and seeing the ways in which neurodiversity is better understood and accepted, I wish again that Kevin was here, no longer feeling the weight of the idea that he was “different” but fully embracing and being celebrated for his unique approach to life.
Lori Tucker-Sullivan’s writing has appeared in The New York Times, The Washington Post, Salon, Brevity, The Sun, as well as anthologies: Detroit Neighborhood Guidebook, and 100 Words of Solitude: Writers on the Pandemic. Her essays, “Detroit, 2015” and “Time, Touch, and a Whale’s Grief,” were nominated for a Pushcart Prize. “Detroit, 2015” was a Notable Essay in Best American Essays. Her book, I Can’t Remember If I Cried: Rock Widows on Life, Love and Legacy, released in 2024 (Backbeat/Bloomsbury), profiles widows of rock stars and what they taught her about grief. She is currently writing a memoir of her marriage amidst home renovation, ADHD, and cancer.
For a person with late diagnosed ADHD, this was such a hard but moving read. Somewhere I felt guilty about the frustration I must have caused my loved ones, especially my mother. She also passed away from cancer and I was her primary caregiver. There is so much to relate in this piece and I share this pain in strange ways but also I feel grateful that I had someone who loved me so sincerely. I am sure the writer does too. Thank you for being vulnerable enough for sharing this story. It is moving, painful, powerful and hopeful at the same time.
Thank you for this. I was also married to a neurodivergent man and a lot of what you experienced resonates deeply (in our case, the relationship did not survive - I have no idea if it would have been different if he had been diagnosed and we understood each other better). It is rare to read this perspective - to feel validated in the deep loneliness and frustration and sadness - thank you.