On a sunny afternoon in July, I stand in the shade outside of the Morristown and Morris Township Library, weighed down with my laptop bag, water jug, and other bookish accouterments, and await my next interviewee.
On a nearby bench, two guys play chess, exchanging quiet boasts. Families stroll up and down the boulevard, children running free as clouds, their futures laid out before them like strips of empty sidewalk. The faintest floral scent anoints the air, common to Morristown’s main drags where the tree blossoms are in full bloom from May to late September. From the sight of things, it is a perfect day.
I see who I believe to be that subject, right on schedule. She wears a yellow floral dress and glides towards me; her gait and carriage are that of someone younger than myself, someone with purpose, driven from within. Her smile illuminates her suntanned countenance. “Mark? I’m Patti.”
Patti Kaufman, President and spokesperson for a nonprofit called CURE for IBD, walks up to me with her hand outstretched.
If I didn’t know better, I’d think I was shaking hands with someone who had never known illness or infirmity. But unlike the weather, a person’s inner life is much harder to read. Its appearance often contradicts its reality, its challenges and truths hidden away like so many precious stones.
With CURE for IBD, Patti has made a volunteer position into a career of sharing these truths with the world and inspiring others to do the same. CURE for IBD was started by Chris Pedicone and incorporated as a 501(C)3 nonprofit in 2016, “to raise funds for research toward new therapies and cures for Crohn's disease and ulcerative colitis, with a special focus on pediatric IBD.”
Upon my first misspeak in our interview (one of many), Patti explains how IBD, which stands for Inflammatory Bowel Disease, is different from IBS, or Irritable Bowel Syndrome. This is a clarification she is highly accustomed to making, and she does quite concisely.
“IBS is curable. IBD is not.” One can go away, the other doesn’t. Simple, yet pivotal. “IBS is not a great diagnosis, but it’s not an awful diagnosis either.”
Not only does this lively, alert person in front of me have a serious medical condition—an “awful diagnosis,” no less—but her condition is chronic and incurable.
She’s dedicated her life to increasing awareness of an invisible disease, one that renders the patient functionally different from other people — other people, who are defined by their jobs, their everyday relationships or families, their goals and aspirations and dreams.
Patti advocates for those who are tempted to define themselves by their diagnoses—of Crohn’s, ulcerative colitis, and IBD—as she has always refused to be.
CURE for IBD distributes 100% of its donations to numerous research facilities, which is rare among nonprofits. Along with other volunteers, CURE for IBD has raised over 1.9 million dollars to date.
Patti is defined by her belief in a cure, and by her mother, Joan’s, wisdom: “Everytime you lose something, you’ll gain something.”
The path was not an easy one; the love of life was hard-won.
Of course, this wisdom was absorbed amid intense challenges and at a very young age.
While other children asked, “why is the sky blue?” or “where do babies come from?” Patti's mother was confronted with questions like, “Mommy, why does my belly always hurt? Why am I nauseous and my head won’t stop aching?”
Patti was only four years old when these questions needed answers, and the answer came in her diagnoses: ulcerative colitis and Crohn’s disease, incarnations of what would later be known as Inflammatory Bowel Disease.
The standard treatment was steroids. Throughout the rest of her childhood, “the side effects took on a life of their own,” condemning this small child to nausea, mood swings, hair loss, moon face, brittle bones, and headaches that made it hard to think.
But, as it says on labels, “this medication has been prescribed because your doctor has judged that the benefit to you is greater than the risk of side effects.” And there was a benefit, a sense of relief; false, but appreciated.
After all, a childhood marked by pain still has room for optimism. Patti hoped her condition would be nothing more than an “annoying footnote.” She excelled at running, winning many races and dreaming of an Olympic future as a track athlete.
She was chronically ill but also chronically upbeat. Her older brother would sometimes remark, “‘why is Patti so happy? She looks at the sky and she’s happy even if it’s raining.’”
“It didn’t take much to make me happy,” she says. Being upbeat “is something that’s innate in me. I do have an advantage with that type of personality. It makes me a fighter.”
Turns out, she was gonna need it.
By age nineteen, it became clear that her condition was not something she would outgrow. To the average person, she looked like just another bright and driven Communications/Sports Journalism major at Brockport State University.
But her close friends saw a different side:
Frantic trips to the hospital almost weekly; soul-bending pain; exhausting anemia. Blood transfusions, cancer screenings, injections of minerals and anti-inflammatories, and steroids; always steroids.
Many was the day or night when she had to steer clear of a social engagement because she was in too much pain. But she was never completely forthcoming. “I would never say what was really going on. I’d just say I had a headache and leave it at that.”
The looming self-consciousness of having to conceal her struggle might have been lifelong and all-encompassing.
Yet hope carried Patti into adulthood. She and her husband, Michael, married in her late twenties; not long after that, they decided to have children despite the known risk (another case of potential benefit outweighing danger). Their verve was rewarded with two healthy babies, beautiful and full of promise.
But these new arrivals didn’t obscure the old one, the one that had well overstayed its welcome: IBD.
People Also Envy What They Don’t Understand
Retirement is usually celebrated. It is a symbol of something ending after years of dedication and service.
Forced retirement, however, is another matter. Who wants to be saddled with symbols of the end at the age of 28, when dedication has yet to be exhausted and life is still just beginning?
But that’s when her illness forced Patti out of her career in advertising and public relations. She was simply too sick to report to a job every day. It deprived her of countless opportunities and put a permanent hold on her entrepreneurial goals of creating a line of women’s athleticwear.
“I’m losing independence every way I turn.”
What was also strange was that people seemed to envy her situation. Upon learning that Patti had stopped working, they’d say, “‘You’re so lucky!’”
“They’re saying this to me when I’m literally in the hospital, with a staph infection in my heart.” So the feeling of being stabbed in the heart was not a coincidence.
Patti developed what she calls Career Envy. She wanted to get up at 6:00 in the morning, hit the gym, and go to an office like everyone else. But she couldn’t. “It just crushed me.”
Yet she reminded herself of her mother’s wisdom: “Every time you lose something, you’ll gain something.”
And she did not give up. She knew that she had more to gain...
A Surgery to End All Surgeries
At 39, her doctor recommended a drastic and irreversible surgery involving the removal of a very particular, very vital part of the human body. If you know the procedure I’m referring to, you know the simple idea of it could wither anyone’s resolve.
But, “the promise of a new quality of life easily outweighed the fear of major surgery.” Sounds familiar.
And that wrenching, life-changing procedure provided exactly five months of relief. Five months, and then, “symptoms returned with a vengeance.” Five more surgeries followed in as many years.
Who wouldn’t start to question why this was happening to them? Again, answers were not forthcoming. But Patti started to realize:
“Why is this happening to me?” is the wrong question. Instead, she started to ask, “what can I still control to make my life better, to make a difference, to live up to my potential in ways I might not have expected?”
But there was at least one more loss—one more unthinkable, unexpected emotional cost—in store for Patti Kaufman, perhaps the price that one might pay in exchange for a glimpse of destiny.
And it had nothing to do with IBD.
“Make My Death Count”
In 2005, Patti's second husband, Doug, was diagnosed with a fourth-stage glioblastoma brain tumor at the age of 38.
Patti was confronted with a phrase we sometimes hear on primetime dramas or read in pocket-sized paperbacks:
“Three months to live.”
But this wasn’t an episode of Chicago Hope. It wasn’t a Susie Tate hospital novel. It was Doug’s prognosis. Less than a school year; not even a semester.
In moments like this, things can become incredibly clear or incredibly confused. It all depends on how you choose to process something unthinkable.
But that’s what Patti had been doing all her life. She chose to see it clearly.
Patti literally said to herself, “take the journey with him, and then when he takes his last breath, you’ll keep living.” And in only nine weeks and three days—a far cry from three months—she was able to say, without regret, “I learned so much from him.”
Doug kept private journals during these last weeks of his life. “He said, ‘you’ll read them afterwards.’”
When “afterwards” arrived, Patti read Doug’s final, aching thoughts. One of them stood out to her as yet another guiding light in her life, which was still taking shape in ways she did not yet know.
“You can help people, Patti. Don’t let this happen to other people, to children. Make my death count, and make your life count.”
Patti’s voice doesn’t waver or pause as she relates this to me. She just says, “This was something I took very seriously.” I can see it in her eyes.
She couldn’t cure brain tumors; she didn’t even fully believe she would live to see a cure for her own illness. But, soon after Doug’s death, a nonprofit approached Patti and offered her and her children grief counseling through an equestrian carriage-driving program. It wasn't long before she became a volunteer herself, raising money for cancer patients and their families.
“They said to me, ‘you and your kids are now wounded healers.’ And I loved the term.”
Patti realized that she’d always been a Wounded Healer: as a little girl who was always smiling, whenever anyone had “any sort of deficit, I wanted to help them.” When someone in the next room was coughing, she would come all the way over to pat them on the back. She wanted to make them smile.
“I think that’s been my path my entire life.”
This still-young person who had lost her husband, her dreams and career, did not feel sorry for herself. She was in the process of discovering her purpose in life. She would create her own career: “helping others” in a volunteer capacity.
And she would make all of these losses count.
From Scarcity Comes Wealth
Jump ahead a decade or two. Since Doug’s passing, Patti immersed herself in many volunteer positions.
One day in 2017, at a golf outing, she was ordering dinner in the cafe, specifying a king’s ransom of restrictions: no peppers, no dairy, no chile, no corn, no fruit, white rice instead of brown, romaine instead of arugula.
Not announcing them, but not whispering, because each one was vital.
A woman approached her with questions; not invasive or inconsiderate, but knowledgeable, sensitive, remarkably specific. “You have to meet my husband,” the woman concluded.
And that man was Chris Pedicone, who had founded CURE for IBD only a year earlier.
Could there be a more fateful meeting of kindred spirits? And all because of golf.
Later that year, Patti spoke at CURE for IBD’s gala and told her story to 250 total strangers. She was 57.
“The response was overwhelming. I knew I had tapped into something. It’s like when they stood up to applaud me, they were standing with me” and against suffering, against stigma. “I knew they wanted to help once they heard my story.”
Patti was right. Since then, CURE for IBD has raised almost two million dollars, every cent of which has gone directly to IBD research.
“Life is a Blank Canvas”
Vincent van Gogh only sold one painting in his life. Poor guy.
Patti Kaufman sold 34 paintings in one year. Fifteen of those sales yielded a donation to CURE for IBD; she keeps prices affordable.
"My pieces often sell so quickly, sometimes I can't keep up with demand."
For once, a good problem to have.
Multiple buyers have reached out to Patti, telling her about the pleasure they derive from owning her work; her painting offers a refuge of peace during a stressful day.
Her mother, Joan, once told her, amid all of the disruptions of her condition, “‘Even though this disease will always be with you, that doesn’t mean you can’t paint a beautiful painting.’”
“‘Life is a blank canvas,”’ Joan said.
That is how Patti has chosen to live her own life. “But I don't put anything negative on that canvas. I don't want to put pain anywhere. Never. Never.
“I don't have time to be sad or feel sorry for myself. I have awareness to raise and paintings to create. To me, every second is valuable because I know where this can go.
“I can't really say for sure that I will live to see a cure, but in my lifetime, I want to be part of the cure.
“Nobody knows how long they're going to live. But I really believe I'm going to live to be a very old lady, very old, and hopefully continue to do what I'm doing up until the end.”
This person in front of me, still smiling, still alert and focused and driven, bears no visible shred of sickness or self-pity. I would never know that she was inured to weekly IVs and biannual cancer screenings, or that sometimes she’s too ill to get out of bed. That’s what it is to live with chronic disease. “Just because you don’t see it doesn’t mean it’s not going on.”
“But it’s part of my journey.”
If life starts as a blank canvas, and the painting is what we make of it, then Patti Kaufman’s painting—and CURE for IBD—brightens lives and moves a hesitant world forward. It brings the hurting, the unseen, the misunderstood, into the light and comforts them.
Her canvas is no longer blank. Like a summer day, it is full, it is beautiful, and it is alive with color.
Patti Kaufman can be contacted at email@example.com and on Instagram: @PJKArtLover. Learn more about CURE for IBD at their website, https://cureforibd.donordrive.com/. If you think this article would mean something to someone you know, please share it.
Story: Mark Ludas @aulos.media
Photos: Peter Stog