As 2025 begins, I haven't been feeling very cheery. Reviewing last year's disappointments and losses - friends' cancer diagnosis; favorite neighbors leaving the 'hood; our heater going out - left me full of dismay. On the list was the death of my kids' beloved pediatrician, Jim Plews-Ogan, MD, who died on July 3, 2024, of ALS. Full of angst and doom, I thought I'd write a remembrance of him, this great man who didn't deserve the worst kind of illness, the kind with no cure.
So I ended up on his blog. That's how I found 'the hope tool.' Plews-Ogan designed it to focus his life with ALS on what he was gaining, not on what he was losing. I recalled his ever-present compassion and presence, which made a huge impact on many pediatric patients and families. And I realized, as he did, that his prescription for living through life's guaranteed difficulties has the potential to benefit all of us.
Kindness for the Least of These
My first memory of Plews-Ogan.
"Does your doll fly?" he asked my daughter. She was 3.
"Yes."
"Do you fly?"
"With my wings."
"Of course."
Unassuming, not condescending, kind: He spoke to everyone, young and old, with the same tone of respect. At our next visit, my daughter wore her wings, and Plews-Ogan expressed genuine reverence. He told her he would have to tell his family at dinner about this since he'd told them about her flying abilities, and now here she was, with evidence. Her wings shook with glee.
It's true. How people treat 'the least of these' - animals, small children, unhoused people, the poor, the weak - shows you who they are.
For me, that little conversation reveals so much about Plews-Ogan's depth of commitment to compassion. He did big things, too, both for me and for the community. He helped our family navigate everything from divorce and bullying to puberty. He saved my son's life, when he had intussusception. He brought into being a service at UVA Health Children's to provide care for children with complex disabilities and medical issues. And, he contributed to the health and well-being of countless families, including Charlie's. He was ever the dedicated physician.
Then Plews-Ogan discovered he had ALS. Still, he brought his full humanity and compassion to bear. He and his wife, Peggy Plews-Ogan, MD, started a foundation dedicated to ALS awareness and funding research. He had to give up seeing patients. But he kept living exactly as he always had, as a whole person.
Bringing the Whole Self = Healing
On his blog, we discover a clue to his approach. A nursing school dean proposed that a medical provider's "primary task was to hone the therapeutic use of self." This credo guided his whole professional life. Plews-Ogan explains how the dean asserted that:
...our compassion, our communication, our empathy were equal and essential aspects of the whole self and would be needed at each encounter...to ensure true quality of care. To this list of therapeutic virtues, I add kindness.
Reading this, I couldn't help but refer to an article in which author Norman Fischer discusses the Buddha as a physician: "'Health' and 'healing' literally mean 'wholeness.' Wholeness implies inclusion of everything — of well-being as well as illness, the good along with the bad — into a larger sphere."
Only a person dedicated to this understanding of wholeness in every moment would take so seriously a toddler and her imagined powers of flight.
Bring Balance to the Whole: The Hope Tool
Plews-Ogan developed a tool to share this whole-self perspective with all of us, the ALS Turbo-charged Living Scale, also called the Hummingbird Hope Scale. He did so to counter the ALS-Functional Rating Scale. That scale, like most medical measures, tracks disease progression. It monitors how ALS chips away at a person's ability to function, bit by bit.
The TLS documents progressive growth. "Jim believed that, with practice and intention, there are ways a patient could bring balance to the devastation of a disease like ALS," the Hummingbird Fund blog says.
The tool focuses on scoring within these areas:
- Adaptability
- Humor
- Kindness
- Compassion
- Hopefulness
- Resilience
- Altruism
- Passion for creating change
- Fierceness and drive
- Advocacy for self and others
- Ingenuity
- Vision and meaning
Read through the statements thinking, as he suggests, of any "difficult life circumstance." Usually, when we face bad news or loss, we put our efforts into fixing the issue, getting past it, and putting it behind us. We go into modes of fight, flight, or freeze to survive.
Applied to any trauma or suffering, the TLS turns this reaction pattern on its head. You're not passively asking, "Why did this happen to me?" or "What am I supposed to do now?" Instead, you look honestly at your situation. You get active. You're not a victim. You explore how you can adapt. You find the funny. You think about others in the same situation. You apply ample amounts of kindness and compassion to yourself and those who love you.
Living Whole No Matter What
If you know anything about ALS, you know it's awful. Some people live years after diagnosis, like the famous physicist Steven Hawking. Others go faster. The question isn't if, but when, it will kill you.
It strikes me that Plews-Ogan specialized in providing care for kids for whom there is no cure, no solution. His role as a doctor wasn't as a mechanic fixing a part of a car. Instead, through his compassion, kindness, joy, and encouragement, he cared for his patients by embodying the turbo-charged life. In so doing, he gave his patients the space to inhabit their own wholeness. He gave children and their caregivers permission to take care of themselves and enjoy being alive.
Yes, You Can Survive 2025
One might look around at the world today and diagnose the state of things as being in critical condition. Certainly, there's a high level of cynicism, overwhelm, crisis, and violence as well as indifference, escapism, and addiction.
We're not going to fix or find a treatment for the human condition. None of us get out of it alive. But we can choose how we show up as medical professionals, as parents, teachers, role models, and people. How we attend to the difficulties - whether it's ALS or other illnesses, wildfires, poverty, or oppression - will ultimately determine the quality of our survival.
How to survive 2025? Turbocharge your response to every challenge that comes. If someone with ALS can do it, so can you. You can embrace suffering and joy, sadness and delight, with action and intention. You can respond to anything 2025 throws at you by, as Plews-Ogan wrote in an article:
Actively seeking beauty, engaging in gratitude practices daily, setting aside time for contemplation, receiving the kindness and love of community, finding ways to make the world better, and letting the absolute absurdity of trying to cope with this disease generate both tears and laughter. All of these practices allow us to… have a sustaining hope.
