‹ PWLE Voices — Issue 3 · September 2026 · Pain Awareness Month

Meet a Fellow PWLE

Two Voices, One Table

Penney Cowan built one of the country’s first peer networks for people with chronic pain out of her garage. Scott Cowan paid for the phone line and supported her every step of the way. Fifty-eight years in, the Cowans talk about the work of changing how pain is treated — and who helps carry it.

Penney Cowan still cooks the big holiday meals, and often makes dinner for the two of them. She does it from a chair she rolls around the kitchen, because standing in one place for long isn’t something her body lends itself to these days. Scott handles the laundry now, and runs what he still calls the sweeper — Pittsburgh for vacuum. Two cats, and fifty-eight years of marriage. Get the two of them on a call together and they finish each other’s sentences, then argue gently about who’s the bigger handful.

That’s worth putting first, because everything else — the organization, and the rooms full of researchers it eventually reached — grew out of two people at a kitchen table working out how to keep a life going.

Before the pain, Penney was an X-ray technician, and then a stay-at-home mom outside Pittsburgh. She was happy there. Then her second child arrived, and somewhere around the delivery she woke up with a headache that simply never left. It moved into her neck and kept going. For six years she went looking for an answer while her ability to function quietly shrank — a woman who never lay down during the day suddenly needing to. She was, by her own account, about ready to give up.

What changed was a referral to the Cleveland Clinic, to a brand-new chronic-pain rehabilitation program run by Ed Covington, MD. Penney went in to fail. “There’s absolutely no way you can help me,” she remembers thinking. “I’m going to do this just to prove you all wrong.” She is, she’ll tell you, stubborn. She stayed seven weeks — she still holds the record — because Covington wouldn’t let her leave. She had arrived unable to hold a cup of coffee. She left a functional person.

From patient to person

Somewhere in those weeks, in the group sessions, Covington kept saying he wished someone would start something so people could keep talking to each other after they went home. And it occurred to Penney that what she’d been taught about pain management was too good to keep to herself. There was something self-interested in it too, and she’s honest about that: she was afraid that if she didn’t keep practicing her own wellness, the pain would take the wheel again. Teaching it to someone else was how she’d keep it honest in herself.

The idea she carried out of Cleveland was small and stubborn — a person with pain is a person first. “Everything I did was from patient to person,” she says. The pain shouldn’t be anyone’s identity. She built a whole method around that conviction, and the first of many manuals to teach it: From Patient to Person: First Steps, a guide to the self-management skills a person needs to take an active role in their own wellness. She wrote a book, too — Patient or Person: Living with Chronic Pain — about her time on the pain program, and, she’ll happily tell you, long out of print. She’ll still tell a new group to skip ahead to the section on basic rights, because that’s where the work starts: helping people feel good about who they are, and focus on their abilities rather than their disabilities. They are equal to anyone else, she insists, and pain doesn’t take that away. And she built small, concrete tools to get people there. There’s the penalty box — members drop a coin in each time pain comes up, not as a punishment but as a way to see how often it slips into everyday conversation; she built it for groups, though it works just as well at home, with family. And there’s the car: you can’t drive on a flat, she says, so you fill every tire with what you need to better manage pain and life. What fills them is the help of a health care provider, along with the self-management skills you learn and the effort you put in yourself — so the pain doesn’t get to take the wheel.

Ask her about any of it and she hands the credit straight back.

I really didn’t do anything for anybody. They did it. I just gave them the right tools.— Penney Cowan

The garage years

The American Chronic Pain Association — one of the first organizations of its kind in the country — started in 1980 with a notice in a church bulletin. People at church had watched Penney leave in bad shape and come back changed, and they wanted to know how. She visited a few of them, then started a group. Her mother asked her to speak to a women’s club, a reporter from the Pittsburgh Press happened to be in the room, and once that ran, the home phone began to ring. Before long she was driving to seven groups a week, most of them in the evenings, after Scott got home and she’d made dinner.

There was no salary in any of this. Penney didn’t draw one for twenty-five years; Scott funded what the work needed; the whole thing ran out of the garage of their house. When the calls started crowding out the family phone — their daughter Kimberly was getting old enough to want a turn — they needed a second line, so they ran a small lottery on the state daily number to cover it. Penney had handed Scott twenty tickets to sell at work. He never sold them. “You just bought them,” she told him. The family sat around the television for the drawing, the kids deflated when their numbers missed — and then Penney looked down at hers. It is, to this day, the only thing she has ever won. A hundred dollars went to the kids. The rest bought a phone line and some stationery.

The board came later, and almost by accident — the local TV station wouldn’t run her community announcement without one. So she found Chick Lidz, a University of Pittsburgh professor who knew nonprofits, kept showing up every week for the next assignment, and built a board out of his friends: a lawyer, an accountant, an advertising woman, a few professors. The manuals came the same homegrown way. Penney had been handing out worksheets — ways to help members understand the concepts and keep working on them at home, so what they learned in group stayed with them. Scott kept copying them at the office until she finally said it was ridiculous and turned them into a manual. Grants eventually covered the printing and the mailing, every cent of them spent on exactly that; the first came from H.J. Heinz. The reach widened on its own from there — a colleague’s nurse gave a talk on self-help at an international pain meeting, and suddenly the calls were coming from Russia, from Australia, from Uganda.

The one who let her go

Scott’s own résumé is its own thing — accounting and systems work at U.S. Steel, applications for the pension fund, travel to meet investment analysts in New York. He was drafted during Vietnam and stationed in Washington. But ask him about his part in all of this and he keeps it plain.

The best thing I could do for her organization was let her go — because Penney was a force to be reckoned with.— Scott Cowan

For years I pictured Scott as the silent supporter in the background. Penney corrects that with a laugh — “he wasn’t always so silent.” What’s true is that he’s patient in a way that seems almost structural. He doesn’t lose his temper, she says, not ever; she has spent years trying to get him to yell at her and he won’t. His own definition of what he does is modest to the point of nearly disappearing: “just giving her an understanding that I was always going to be there.” As Penney’s body has asked more of the household, he has picked up more of it — the laundry, the sweeper, and the few dependable meals he taught himself back when her travel calendar meant someone at home had to know how. “Our house would be a mess if it weren’t for him,” she says.

The honest part is harder, and it’s the part care partners will recognize. Penney does not want help. Let me do it, let me try — that’s the reflex. And so Scott, who would do everything, has to stand back and let her do what she can, which is its own kind of patience, and not an easy one. “I think he has a hard time trying to help me,” Penney says. “That’s probably why he doesn’t talk about it as much. But he does a lot.”

What the person beside you carries

Long before “care partner” was a phrase anyone used in research rooms, Penney went looking for what it actually meant. Before she could write the family manual, she spent three years interviewing the people around someone in pain — the partner who shares the house, and the children who grow up inside it — because, as she puts it, “I don’t know what it’s like to live with someone with pain. I only know what it’s like to live with pain.” What she came back with was a single, leveling observation. The person beside you, she found, lives almost exactly the life you live. “They don’t feel the physical pain,” she says. “They feel the guilt, the anger, the frustration, the confusion.” The ones she is careful never to let people forget are the children, who tend to decide, quietly and on their own, that a parent’s pain is somehow their fault.

Both Cowans have turned that understanding into something practical. They go to each other’s medical appointments — all of them — so that neither has to take the other’s word for what a doctor actually said, and so nothing gets past either of them. Their daughter Kim has access to the patient portals too; she’s the next call when one of them lands in the emergency room, and she knows she’ll be the caregiver down the road. Scott’s one real frustration, after watching Penney move through a long line of specialists, is how rarely any of them offered to pick up the phone and talk to one another. The care, he thinks, would simply work better if they did.

One of the groups I run is for older people living with pain, and what I have learned there is how many of them have no one — no family, no connections left. Penney nods at that; it’s what the groups were always quietly about. People who walked in as strangers ended up driving to retreats together and becoming, in her word, a family — counting on each other. That, more than any framework, is the thing she wants the next wave of advocates to understand. Her message hasn’t changed in all the years I have known her, and she’s almost proud of that. There is hope for tomorrow, and you are not alone — there are far more of us out here than it can feel like from inside the isolation. But the work is still yours to do. Nobody, she’ll remind you, can fill the tires for you.

Scott’s advice, characteristically, is shorter, and it’s aimed at the people doing the carrying. Take your time. Pace yourself. Be honest with people, and stay at it, and sooner or later you’ll find the ones who genuinely want to work with you. Fifty-eight years in, that’s roughly how the two of them have done everything — at the same table, one voice and then the other.

— Tom

This profile is drawn from a recorded conversation with Penney and Scott Cowan, edited for length and clarity. The Cowans were offered the whole issue before it ran, with the chance to change anything in it — not merely to approve it. The words quoted here are their own.

The views, positions, and recommendations expressed in this article are based on my personal experiences. They are solely my own and do not necessarily reflect the views, policies, or positions of the American Chronic Pain Association (ACPA), the Patient-Centered Outcomes Research Institute (PCORI), or any federal program or committee on which I serve. AI was used for research, editing, and organizing; final text is my own.