Cristin Lind’s son, Gabe, has multiple chronic health conditions and complex needs. She remembers the moment, standing in her kitchen, when she shifted from mom to advocate.
“I had spent years caring for Gabe, but in a passive way. I didn’t understand that I was in the driver’s seat. I was surrounded by smart people and was happy to do whatever they told me to do.”
But one day while talking with her husband about his possible job promotion, she said maybe it would be a chance to quit her job and devote herself full time to figuring out Gabe’s needs.
“It felt different in my whole body when I said that. Once the words were out I knew there was no going back. I had seen a truth and couldn’t deny it anymore.”
That moment led to a year of intense advocacy looking into Gabe’s needs. And feeling moved to make it easier for other people. Cristin wondered if navigating the healthcare system was so difficult for her—someone with social capital and other strengths—what must it be like for other parents?
“Health is woven into the cloth of life, and to divide it into separate pieces labeled ‘school’ and ‘work’ and ‘family’ unravels the entire fabric,” said Cristin. “Yet the very systems meant to support my son, Gabriel, often tried to do just that. Accessing and coordinating his services became a greater challenge than his actual condition.”
“As we nurtured this sense of interconnectedness, our whole family’s health and lives improved,” Cristin said. “But it was hard to enjoy what we had created when we saw disparity in among our extended family, our friends and our neighbors. My desire for a sense of interconnectedness and wholeness in Gabe’s life expanded to a desire for wholeness for everyone, everywhere.”
In March 2014, Cristin attended the Courage to Lead for Young Leaders and Activists retreat. She came with the question of how to cope with the struggle of being a healthcare advocate.
“Most of the people teaching me about advocacy had an Us vs. Them mentality,” Cristin said. “As parent of a child with special needs, you get the message to be a mama bear, to be fierce and not back down, to think you’re the expert. You’re told that to do this advocacy well means you have to fight.
“But it simply felt wrong to be fighting my child’s teachers and doctors. They were trying to do their best, but often the systems they were working in tied their hands. I felt that fighting can’t be the way. There’s not enough power to go around. If parents have to fight to get more power, change won’t happen in my lifetime.”
“There’s something beautiful about being the voice for people who haven’t found their own voice, or working for equality and social justice. But the Us vs. Them perception is not a useful paradigm. I think of myself more as a partner when I’m doing my work.”
Cristin found her heart’s truth after attending the Courage to Lead for Young Leaders and Activists retreat. During the retreat, Parker Palmer shared stories about his trips to the South during the Civil Rights movement. He said, “We realized that the struggle wasn’t between blacks and whites, it was the struggle between people who understood and people who didn’t understand.”
“As I talked to Parker, he mentioned wholeness of the heart and I suddenly understood. Healthcare advocacy is about those who understand the wholeness of people – even health care professionals – and those who don’t.
“It was powerful for me to let go of the idea of my advocacy work being a struggle. I thought, I’ve been given this amazing opportunity as Gabe’s mom to understand the need for wholeness. I saw that if I could bring wholeness instead of trying to fight, then it would be okay.
“To be given the opportunity to get so clear on your own truth – that’s such a gift. That’s what the Center is offering,” Cristin said. “I hope as many people as possible get that opportunity.”
Cristin explained, “For me, the retreat was really transformational. I had a lot of thoughts and ideas inside me all the time, but I wasn’t brave enough to let them bubble up. The retreat carved out a space for me to let those thoughts bubble up. Having access to the wisdom of Parker Palmer and Marcy Jackson – to be guided by such high level teachers – was a very powerful experience.”
Parker’s words continued to resonate. As she waited for her flight home, Cristin jotted down a poem, her first since third grade. Then she set it aside.
The One True Measure
What if we measured health
not just by scans and lab tests,
by blood gases and disease activity scores,
by payment and value,
but by wholeness?
The wholeness of our physical body,
not just a leg or a head or a kidney,
but a single being that dances,
that moves through space to make and build and touch
The wholeness of our lives,
not just a patient,
but a bus driver, a grandparent, a gardener
who buys a coffee at that corner shop every morning on the way to work.
Not simply a nurse practitioner,
but a parent and a child and a spouse, a collector of kaleidoscopes
who sings in the car
The wholeness of our teams,
not just a doctor shouldering the burden like Atlas,
but a hive of callings,
fueling each other with the courage to ask the right questions,
able only together to find the right answers
The wholeness of our relationship,
not just one-who-heals and one-who-would-be-healed,
but as two who were present
as if both lives depended upon it
The wholeness of the heart,
one moment beating open to let its own wisdom rush in,
the next pulsating to let it flow into the world
Soon after attending Courage to Lead, Cristin was invited to bring her leadership to a nationwide initiative called 100 Million Healthier Lives. She is now serving as co-chair of the Guiding Coalition for Health leadership team. Cristin was asked give a welcome speech the coalition’s first meeting in October 2014 with 200 people representing health care systems, communities, education, employers, payers, policy makers, and more. (See related blog.)
“This little spark went up in my head about that poem. Normally I would say to myself, ‘Nobody wants your poem.’ But I mustered up the courage to send it to the program chair who said, ‘This is exactly the right thing for this moment.'”
While others were focused on presenting data and slideshows, Cristin suggested other ways to instill wholeness into the conference. Cristin brought in a performance of Latino youth with Downs Syndrome, who danced their cultural dances. It was a way to explore “what does health mean” and give people an artful way to experience the idea.
“I don’t think I would have had the confidence before the retreat. It felt good to raise my hand and say, ‘As a person who wants healthcare to change, what can we do to keep the people in mind who we’re trying to help.’
“Before the retreat, I would have tried to lead by being the way I saw other people leading. But I’m not a doctor or a systems expert or a policymaker. I’m a mom. My only expertise is my experience. Courage & Renewal really gave me the courage to accept that that was enough. My authenticity is something. All of us bringing our authentic selves is more useful than anything else.
We asked Cristin what it’s like to be on the leading edge of change in healthcare with the 100 Million Healthier Lives initiative.
“That’s where the magic is happening right now. It doesn’t happen everywhere. We’re getting beyond what is my expertise and what is your expertise. We’re getting to a place where my job isn’t to tell you what I need and your job is to fix it, but to talk about how we are both allowed to have needs and both allowed to generate solutions. That’s the place of wholeness.
“How do we get beyond stance-taking and defense of our positions? That’s a complicated message, but not a strange message for anyone doing the hard work,” Cristin said.
“There’s a growing awareness about the wholeness of our lives. For decades now we’ve been building sectors that are very ‘system centric.’ Now we see we’re losing effectiveness by doing it that way. A new holistic systems thinking is coming to healthcare, education, social services – understanding these are all systems trying to help the same person. If they can’t work together to discover what a person really needs, then we’re all spinning our wheels in different places.
“The idea behind 100 Million Healthier Lives is that we need to be able to collaborate in a more holistic way. We need to design health care systems around people lives, not expect people to live their lives around the systems.
“People have been yearning for this and the cry has been answered by many organizations.”
Being “in it together” with other people gives Cristin the courage to keep doing the hard work.
“I love being with other people and realizing they are also mustering up their courage,” Cristin said. “I’m really lucky to be doing this work at a time when we’ve hit a tipping point. If I were the first person to have this idea that things should be different, I wouldn’t be doing it. I need other people, reminders, role models, and encouragement.”
How is Courage & Renewal equipping Cristin to be a more “faithful & effective” activist?
“One of the most important things about Courage & Renewal is that it creates a forum. No matter where you are in the world, or serving one person at a time or trying to create policy change, you reconnect with people who are always looking to find their courage,” said Cristin.
“I wish that as many people as possible had access to this Courage & Renewal ‘technology’, this wisdom. The depth of the retreat I went to was like plate tectonics. The axis of the earth moved a couple of degrees. Afterwards, you think you’re doing the same thing, but you can’t undo that retreat.
“For me, Courage & Renewal is doing very special, very unique work. As young, mid-career professionals, we’re given tips, tricks and shortcuts – the top 10 ways to do things. But now I see that real wisdom comes from doing the hard work. You need company. You need teachers, collective wisdom. I don’t know a place to find those things in activism beyond the Center.”
You can follow Cristin Lind at her blog, www.DurgasToolbox.com.