In late summer of 2017, I met Patrick via a mutual friend on Facebook. For the first month, he and I communicated only by text, and for the five months after that, only by text and telephone—not even video chat. Six months, thousands of pages of texts, and more than 900 hours of phone conversations later, we finally met in person. Across all those months and all those words, I not only learned that Patrick was a great communicator; I also learned more about Patrick than just about any other human being I’ve ever known. Just as important, Patrick helped me know myself better, too. On February 1, 2018, when he stepped off the plane in Denver for the first time, he was exactly what I expected.
The Patrick I got to know through all those conversations had three great loves: his children, Anne (19) and Jack (17); the St. Louis Cardinals; and his job. Patrick’s work as an executive coach was both vocation and avocation; he had managed to find a job that drew on his skills not only as a lawyer and judge but also as an actor and, yes, a communicator. Patrick could stand in front of the country’s most powerful and influential executives and teach them how to be better communicators themselves, as well as stronger negotiators, and more effective leaders. The enthusiasm he felt for his job, the energy he brought to it, were infectious. He lit up when he talked about his latest class or his most recent coaching client. He loved his colleagues, he loved what he was doing, and he was good at it. He told me that he had found the work that would keep him engaged and productive until retirement.
But during a visit to the gym in early November 2017, Patrick realized that the 20-pound dumbbell he had lifted only the week before was now too heavy for him to budge. He started noticing weakness in his left hand and crazy muscle twitches in his arm; he lost the fine-motor dexterity necessary to clip his fingernails, tie his shoes, and button his dress shirts. In December 2017, he was diagnosed with ALS, and everything changed.
ALS doesn’t come with a handy guidebook, a timeline, a first, this will happen, then, that will happen. Our ALS Association case manager, Mary, told us that every person she meets with ALS is the first person with ALS she’s ever met, because the progress of the disease is so unpredictable. ALS can begin as weakness in the arms or the legs, or as a problem with speaking or swallowing. It can progress rather rapidly—about half of the time, patients survive for less than three years—or not so rapidly: Twenty percent of patients survive for five to ten years. This not-knowing adds to the stress. Yet in some ways, Patrick was fortunate in that he at least got an immediate diagnosis. In our ALS support group, we heard the stories of people who were misdiagnosed for a year or more, undergoing unnecessary surgeries while doctors struggled to find the cause of their symptoms.
Given his love for his work, Patrick told his boss and colleagues that he would continue to work as long as he could. They were tremendously supportive, but over the next six months, he lost more and more strength in his left hand and arm, and his right hand also started to weaken. By June 2018 it was too exhausting for him to stand and talk for eight hours a day. He was having trouble operating the video recorder he used to tape and coach his students; even getting dressed for work was difficult. He was forced to retire much too early from the job he loved. It was heartbreaking.
Once Patrick stopped working, we had to decide where to live. New York, his home, was expensive, and my work, as a Project Manager for AT&T was in Denver. Colorado was more affordable than New York, and, as luck would have it, in 2016 the state had adopted a Medical Aid in Dying law, which allows terminally ill patients to request and self-administer life-ending medication. We had discussed what interventions, if any, Patrick would accept in order to prolong his life. A feeding tube? A non-invasive ventilator? A tracheotomy? At that point, he wanted none of it. He wanted to control his destiny and die as naturally as possible. The Medical Aid in Dying law would give him the flexibility to decide when he’d had enough.
By mid-2019, as chewing and swallowing became difficult and exhausting, Patrick began losing weight steadily, going from a healthy 5’10” 195 pounds to roughly 135 pounds over the course of the year. One morning, in mid-January 2020, I tried to feed him some yogurt, and he couldn’t swallow it. I tried water. He couldn’t swallow it. He could not get anything down his throat. I began to panic; not only could he not eat, but I had no way to give him any pain pills or other medications. That day, I begged him to accept a feeding tube. “I can’t watch you starve to death,” I pleaded. “It is horrible enough watching you die, but I can’t watch that. Please.” Finally, he agreed to let me call the doctor.
I wasn’t sure it would still be possible for him to get a feeding tube: Once lung function reaches fifty percent or less (lungs are another victim of ALS), the surgery can be too dangerous; many doctors will no longer perform it. Had we waited too long and missed Patrick’s window of opportunity? But on January 21, we checked into the outpatient surgery wing at Colorado University Hospital, and Patrick—by now down to perhaps 125 pounds--got his feeding tube. The access to nutrition allowed him to gain back a few pounds, increase his energy and eliminated the emotional and physical stress of eating and swallowing pills.
Why did Patrick change his mind about using artificial means to prolong his life? It wasn’t only my desperate plea. The feeding tube also bought him time and energy to finish a project that, in the preceding months, had come to mean more and more to him: this book. He hadn’t yet said everything he needed to say. He hadn’t completed this legacy for his children.
A few months earlier, in November 2019, Anne and Jack had visited to celebrate Patrick’s fifty-seventh birthday. Seeing their father inhabiting this unfamiliar body was jarring for both of them, I think; it’s one thing to know that your father has a terminal illness but quite another to see his deterioration up close. For two days, they had a wonderful visit. Patrick could still talk, and what they couldn’t understand, I could translate. When they left, I think Patrick finally felt at peace.
Still, as Patrick settled into life in Colorado, he started thinking about what he could leave his children. He knew that his diagnosis meant that he would almost certainly miss all the milestones of their young adult lives: college graduations, their entry into the work world, their first homes, their marriages and children. So, shortly after their visit, Patrick decided to write a slim booklet of advice to share the lessons he had learned in this life. He wanted to guide them as they entered the adult world, to keep himself alive as the voice they could turn to when they had those “I-really-wish-dad-were-here-so-I-could-ask-him. . . ” moments. He wanted to leave behind a little piece of himself. At the end of November, his physical state waning, Patrick got to work. Writing A Few Things Before I Go became his last labor of love.
With awe, I watched his dedication and tenacity as he used eye gaze technology to write for hours at a time, typing out every word with his eyes until he could no longer focus. Every couple of hours I would adjust his wheelchair, move his arms, cross his legs—whatever it took to keep him comfortable. The work was physically exhausting, and emotionally draining, too, driving home the realization that what he was writing would have to substitute for the conversations he longed to have with his children as they navigated adulthood. But once he started to write, the words poured out of him. Somewhere along the way, the advice booklet morphed into a full-blown book. Writing gave Patrick a purpose. Soon he was up each morning, parked in front of the Tobii Dynavox, writing like a man on a mission. Time was critical. Given his weight loss and his weakness, we both expected that the inevitable was near. I didn’t think he would see 2020. But he survived long enough to finish.
Reading this book reminds me why I fell in love with Patrick. I found his brilliant mind and his wicked sense of humor irresistible. We laughed constantly, we challenged each other to explore things that were new and different, and we understood each other. He used to joke that we shared the same brain. As Patrick’s disease progressed, we could no longer talk endlessly, as we had early on. Sharing a brain helped; often, I could correctly guess what he needed as well as when he needed it. For me, losing that ongoing conversation is the hardest part of losing Patrick. Reading this book, I still feel like I have him whispering in my ear.
~Elisabeth “Libby” McKenna August 6, 2020