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Resonance
Fall 2023 - Narrative Reflections

Resonance

Resonance

By Regina Kaufman, PT, EdD, MS

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The news came via text from a colleague. Adam had died the day before, from a cause not yet known to my associate. This caught me by surprise. There weren’t any obvious indicators that his death was imminent. I reached out to his son, but the call went to voicemail. As I moved through my day, wondering what happened and preparing to tell my colleagues, students and alumnae who knew him, my mind went in many directions. Throughout the day I thought about moments I’d shared with Adam. I revisited memories of Adam’s contemporaries, too, a number of whom preceded him in death. As I often do when a clinic patient passes, I also thought of the Young@Heart Chorus. Young@Heart is a group whose singers are primarily older than 70. In a documentary film celebrating the group’s achievements, the director reflected on the deaths of two long-time members. “It’s the nature of who we are,” he said. “When you know older people for a long time, you’re going to experience a lot of loss.”1

I have a group like that. I run a pro bono physical therapy clinic with the help of all of my students. A lot of our patients are older. They tend to stick with us for a good long while. Though we are not musicians, I think we make a beautiful noise. Like the Young@Heart Chorus, our community experiences a great deal of loss. Adam’s passing was just the most recent.

Nancy wasn’t the first to go, but she was the first of those that we’d come to know well. For several years, and 40 times each year, she came and spent an hour or more with me and my students. She couldn’t talk, having lost her language to a stroke, but her gestures spoke legions. Somehow, we always knew if she was confident or uncertain, pleased or displeased—and, lucky for us, she was pleased more often than not. A big laugh and a hand on your knee made it plain that she’d finally understood something you’d been working to communicate, and you could move on to the next thing. When her health and function failed, her husband Jonah couldn’t manage her care at home. He took her to the loveliest care setting he could find. Though he visited every day, his spirit and his body both sagged without her continual presence. Then they shared a room in that care setting until Nancy died—followed in very short order by Jonah, who did not want to live in a world without her. Their children, in their wise knowing, had predicted their coupling even in death. They delayed Nancy’s funeral, knowing he would soon go, too. The joint service was a celebration of their union, even as their wedding had been so many years before.

Allen’s passing was a shock. He’d been inclined toward misfortune in the bathroom. He had trouble getting through the door without falling down. Passing through a bathroom door is not as simple as it seems. It requires coordination between the feet and the hands, balancing on the turn in order to close the thing to conduct one’s business in private, and then step back for the swing as it opens again to exit. He swore a lot while he practiced, over and over—a big guy cursing and boisterous, waving off all whose attention he’d grabbed—and trying again. He settled to sleep one night next to Tina, his wife, as he had done for years. When she woke in the morning, he did not. She pounded on his chest until the EMTs and family arrived and told her there was nothing more to do. 

Michael was a wisp by the end. He was sarcastic, wise-cracking through dentures that fell out more than they stayed in. He’d been an alcoholic for decades. He didn’t drink for as long as we knew him. I never learned if he quit because he finally gained the stamina recovery requires, or because since his stroke he could no longer drive himself to the package store. It didn’t matter in the end. The damage to his liver was irreparable. According to his kids, his so-called joking had become softer, less hurtful, since he cut out the booze. So his later years with his children were kinder than those of their childhoods. A little healing for them, perhaps, before he began to drop all that weight, and drop off to sleep in the middle of therapy, until it no longer made sense for them to bring him to the clinic. I learned that he’d been handsome in his younger years, as I gazed at his photos, moving slowly in the line that brought me to his casket and his family.

Sasha, like Allen, died quickly from a heart attack. As did Gary. I assume others must be gone by now, too: Tanya, Wyatt, Nando, and Rich. Their circumstances ended their participation in the group for one reason or another, and I stopped hearing from or about them. Phillip lived a month after the start of the COVID-19 lockdown in March 2020. I didn’t know at the time that he’d left us. Attention was turned to the global health crisis, and there were no good options at the time for a service of farewell. Ryan’s health apparently failed as well, needing hospice in the end, for a cause I never knew, because devoted as he was to our group over years, he shared little personal information other than tales from his travels. He had an infection that needed attention, but he’d be back, he assured me on the last day he spent in our clinic. A year or more passed, then I spied him at a Christmas fair. Ryan was with Rose, his wife of 60 years, who pushed along the wheelchair in which he was sitting. He enjoyed the arts and crafts creations, as did I. We took a little time to catch up. I only learned of Ryan’s recent death coincidentally to Adam’s. Ryan’s obituary from six weeks prior popped up inexplicably as I searched the internet for Adam’s.

Adam was a founding member of my clinic. For nearly two decades, I saw him twice a week for the better part of each year. He was 61 when I met him. He’d had his stroke at the mere age of 40. He never recovered his ability to walk. While he regained some speech, he was hard to understand. He never earned a paycheck again, never drove the car, or mowed the lawn, or chopped a vegetable, or did anything with the laundry except wear it. It was not for a lack of longing to do all of those things. I wondered about his son, who would have been young at the time, and what his life became with a dad whose role changed in an instant.

Adam lost his wife Beth to cancer two years ago. She had “tired blood” they told her at first, which seemed apt. She’d devoted most of her adult life to maintaining their life together. Everything he did—bathing, feeding, dressing, traveling, fulfilling his role as a volunteer mentor to other stroke survivors—he did with her support. She was tireless, yet exhausted. She was home with him until the very end of her life. When she died, and his son couldn’t take him in, he transitioned to life in a nursing home with what appeared to be pragmatism and grace. He found ways to keep busy. He spent time in the modest gym, played hours of chess on his laptop computer, and was working on a book, whose draft he had shared with me. I saw him for the last time three months before the message appeared on my phone. He had looked fit and healthy. Then he was gone. That’s all I knew, except that whatever it was, it was fast.

That day, I did what I’ve learned how to do, to care for myself and for others, when a dear one passes on. I found the obituary, cleared my schedule for the calling hours, and sent out the emails letting the members of our clinic community know about his passing. Most importantly, I spent time sharing stories with people who’d known him as I did, over years.

When I started my clinic 20 years ago, I didn’t know how to think or talk about people dying. I was uneasy in the face of a person’s passing. My discomfort kept me from engaging with others who could have used my support, whether dying themselves or suffering the loss of someone who’d passed. In my early work as a teacher, on the rare occasions the ‘death and dying’ content was mine to cover, I treated it as something of an academic exercise, saying what the books instructed me to say. My efforts were devoid of true and compassionate understanding of how one might journey toward and through the end of life with another person.

Maturity and experience have nudged me toward deeper connections with both the living and dying. There is no longer much I’m afraid to listen to and talk about. Even when the conversation is about something as fraught as one’s pending death or the loss of a loved one, by asking questions, affirming feelings, and offering support, my unflinching engagement with patients yields a rich professional life. 

As an educator, I am compelled to help students learn how to develop authentic relationships with patients in life and, possibly, at the time of their deaths. I don’t know how I could ever teach that just in words. I can model it, though. It is one reason my clinic is such an important part of our students’ education. We work with the same patients for years. The time we spend together over those years provides opportunities for development of deeper relationships than those in a typical clinical setting. We learn our patients’ stories. We witness their challenges as well as their triumphs. We know who their family members are. While my clinic is usually a happy place, there are moments, and plenty of them, when students watch as I listen quietly as one patient or another recounts painful loss and sits with hard emotions. When I must share news of the passing of one of our members, the students are there, listening along with the rest of the clinic community. Over the years we’ve mourned Nancy, Allen, Michael, Ryan, and all of the others. Now I’d share the news about Adam.

Those moments of loss are often points of later reflection by the students. Their writing frequently speaks to what they learn about the importance of bearing witness to another’s grief. Their impulse to look away or to change the subject is tempered by their observation of the impact it has when one holds a space for raw emotion. We share in a wide range of experiences—from joyous to ineffably sad. Just like me, the students whose approaches are superficial at first learn to deepen over time.

The deaths of our patients are deeply embedded in our shared experience as clinicians, teachers, and students. They are part of the personal and educational legacy of the people who have come and since left us. When you know older people for a long time, you experience a lot of loss, for sure, but you journey with a choir whose songs resonate long after the beloved members are gone.

References

1. Walker, Stephen. Young@Heart. (DVD). London, England: Channel 4 Television; 2007


Regina Kaufman, PT, EdD, MS

Regina Kaufman, PT, EdD, MS is Professor of Physical Therapy at Springfield College in Springfield, Massachusetts. She received her Bachelor’s degree in physical therapy from Russell Sage College in 1984, an MS in PT from the MGH Institute of Health Professions, and an EdD from the University of Massachusetts, Amherst. She is also a Board-Certified Specialist in Neurological Physical Therapy. She is an academician and clinician with a strong commitment to community-engaged education. For the last twenty years, she has partnered with community members living with chronic health conditions to promote improvements in health and function while enhancing DPT student development through a variety of service-learning initiatives. Long-term relationships with community partners have prompted and informed deep introspection about what it means to provide authentic person-centered care as well as an evolving critique of some of the values and assumptions that drive traditional rehabilitation efforts.

 

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