Life Lessons Three Decades in the Making
Longtime guest lecturer Michael Sugar reflects on his 30 years of sharing perspectives and experiences with USC occupational therapy students.
By Mike McNulty
View/download this article in the USC Chan Magazine as a PDF document (2.92MB).
Each year, Michael Sugar visits campus to speak with a classroom full of USC occupational therapy students, most of whom had not been born at the time his doctors told him he only had two years left to live.
For the talk, Sugar does not prepare Powerpoint slides. He doesn’t follow a canned script. He’s not an occupational therapist, researcher or public speaker.
Sugar is a long-term survivor of HIV/AIDS, and since 1995, he has shared his personal experiences and advice as a guest lecturer in “Creativity, Craft and Activity Analysis.” In this foundational course, first-year OTD students learn how to analyze the skills, steps and conditions necessary for successfully engaging in occupations. Students also study the profession’s frameworks and views on the interrelationships between occupation, health, narrative and identity.
Sugar comes to students as a consumer who has experienced the health care system long enough from the inside to powerfully communicate both its successes and its failures. The story he tells is one of loss, survival and, ultimately, hope. It’s also a story that continues to develop with each passing year.
“It’s not as simple as going back to last year’s notes,” Sugar says. “Over the years I’ve told my story, it has evolved a lot.”
Longtime guest lecturer Michael Sugar (photo by Amber Bennett)
He started speaking with USC students in 1995, after another guest speaker had to cancel at the last minute. A then-OT student and friend of Sugar’s suggested to the course instructor, the late Ann Neville-Jan, that he would have valuable insights to share with practitioners-in-training.
At the time, Sugar says he was still working through his own emotions. He was diagnosed with HIV about a decade earlier at the height of the AIDS epidemic, a time rife with fear, bias, stigma, misinformation and, perhaps more than anything else, a sense of anguish and devastation.
“I was still dealing with a lot of grief,” Sugar says. “I talked about my anger, about the government’s neglect, about losing over 100 friends to AIDS.”
Yet over the three decades since, Sugar says his lecture now mirrors the ways in which his own perspectives have shifted.
“I have a couple philosophies and mantras that I live by, and one of them is that life is a show about perspective,” Sugar says. “I think my perspective has shifted. The anger and grief and how I contend with those things are still a piece of what I talk about, but there’s so much more.”
Following the Plot
Sugar is one of many “experts by experience” integrated across USC’s curricula — laypersons with firsthand understandings of disease, disability and health conditions. They bring their experiences and wisdom into classroom learning activities, assist when debriefing student fieldwork experiences and consult with various faculty teams on various projects.
Altogether, their unique perspectives help shape the knowledge and professional development of USC students by serving as a bridge, of sorts, between the classroom and the “real world.”
More recently, Sugar has reorganized his lectures around what he calls “plot points,” those definitive moments that shift the entire structure, direction and momentum of one’s life story. The plot metaphor is a familiar one for Sugar, who is now retired after a long career in the entertainment industry. Returning to the classroom year after year has proven a welcome opportunity to keep connecting the plot points within the ever-unfolding self-narrative of his own life.
“Things feel random when they’re happening,” Sugar says. “But when you look back, you can see where these points had an impact on everything that’s happened. Talking at USC to OT students over the years has really given me an awareness of the depth of my capacity for compassion that I might not have otherwise known about myself.”
Setting the PACE
Notes, mementos and memoirs accentuate Sugar’s annual guest lecture to students (photo by Amber Bennett)
For today’s USC students, most of whom hail from a generation that has only heard about the AIDS crisis through textbooks or documentaries, Sugar is able to fast-forward cultural memory into the immediate present.
He also inspires students to consider how they will approach building therapeutic relationships with their own future clients. In his lectures he often shares a mnemonic acronym that he’s developed over the years based on his own experiences: PACE, which stands for Partnership, Advocate, Collaborate, Evolve.
“Partnership is to let patients know they can count on you; that they have you in their back pocket,” Sugar says.
Advocate, he says, functions as both a verb and a noun, and is as much about what patients can do for themselves as what providers can do on their behalf.
“Depending on a particular person’s needs, to advocate is to help connect them with resources, and maybe also to help them learn how to better advocate for themselves,” Sugar says.
To collaborate is to find ways of meaningfully working together. As an example of meaningful collaboration, Sugar tells of a time when he and his primary care physician together compiled a list of his self-care activities and goals.
“We wrote it down and [my physician] said, ‘Would you excuse me for a minute?,’” Sugar recalls. “She went out of the room and then came back a minute later with two copies of [the list]. She made me sign one and kept the other, and she said, ‘Now we have a contract.’”
Last but not least, to evolve is to continuously appraise what’s working well for clients, what isn’t and to be willing to adjust care plans and interventions accordingly.
“Sometimes things have diminishing returns,” Sugar says. “What worked for a while, doesn’t work well after a while.”
Sugar emphasizes that PACE is a practical framework for students to cultivate their own therapeutic identity, with a focus directed toward their future patients.
“It’s really important that people who will work in health care have an understanding of history,” Sugar says. “That, as an occupational therapist, when you begin to work with somebody you will want to understand their story by asking, ‘Who are you?,’ and, ‘How did you become who you are right now?,’ and, ‘How do we work together in ways that promote you being you, or returning to being fully you?’”
The Power of Perspective
Outside the classroom, Sugar’s life in retirement includes many everyday occupations that bring him meaning, purpose and joy.
He is a self-described film junkie; “The Wizard of Oz” and François Truffaut’s “Jules and Jim” are among his all-time favorites. He is a devoted animal lover, and credits his longevity to his cats as much as to any medical or pharmaceutical intervention.
But when he makes his annual visit to USC, as he has for more than 30 years running, Sugar is equal parts historian, activist and educator, telling the latest version of a story he has shared with thousands of students now practicing as occupational therapists.
“I really feel like I’m making a contribution with my story, one that students take into their career and maybe into their personal lives, relationships and interactions too,” Sugar says. “Hopefully that will resonate, because some of what has worked really well for me has enhanced my life tremendously. It’s almost like magic to be able to have that kind of impact on people’s lives.”
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