“You don’t really have a choice about getting knocked down. You do have a choice between staying down or getting back up.”
The view from this height is breathtaking.
I’m meeting my interviewee for lunch at the University Club, a top-floor members-only restaurant and lounge for students, faculty, and staff of the University of Pennsylvania. I’m a PhD student there, enjoying the Club’s “first year of membership free” perk. And my interviewee is enjoying the large tables.
“Sorry bro, I like to spread out.” Nico Meyering grins sheepishly at me, running a hand through his blonde hair, a nervous habit he will repeat often during our time together. On the table are a spreadsheet, a notepad with some hasty scribbles, a smartphone he uses like a computer, a half-forgotten graphic novel, and a sparse lunch of sweet potato soup, two turkey burgers, and mixed vegetables that he keeps meaning to eat. The phone lights up with some sort of reply and Nico speaks into it, recommending a sleep study and a “trach downsize before decannulation” before adding that he isn’t a medical professional. I admit that I don’t know what any of those words mean.
Nico isn’t a medical professional but he IS a whirlwind.
I met Nico years ago when we were both graduate students at Binghamton University. I thought his energy and constant movement was just the result of too much coffee or the stress of final exams. But here, dressed semi-formally, he’s the same whirlwind from before. The first thing I learn about Nico is that he’s always moving. I’ll learn much more over our hour together.
Nico was born 31 years ago with a nervous system disorder called congenital central hypoventilation syndrome (CCHS). The most notable and life-threatening symptom is the body’s lack of an automatic impulse to breathe, which means people with CCHS need lifelong mechanical ventilation when they sleep. Some need around the clock venting. Other CCHS concerns may include eye/vision issues, speech delays, or digestion issues.
After Nico was born, his mother swung into action, finding other CCHS families and bringing them together to share stories, support one another, and eventually connect doctors to families. A few decades later, those ragtag families are now The CCHS Family Network, Inc., a federally-recognized nonprofit that funds research and raises tens of thousands of dollars for the roughly 1200 people worldwide living with this condition.
Nico has been ever-present; he shows me photos from each successive gathering. He rattles off his various duties: moderating the group’s Facebook presence, being a liaison between people with CCHS and their families, explaining CCHS to general audiences (his TED talk from December 2017, Dis-ABLE-d, has been viewed on YouTube over 500 times), and trying to mentor teens and preteens with the condition.
“We are ninety-nine percent just as healthy or normal as people who don’t have CCHS. We have hobbies and interests and pet peeves and everything. I keep telling people: CCHS is manageable when you stay on top of it. It’s not fatal. It’s not degenerative. We have equal or better life expectancy. We get married, we have jobs, we get stuck in traffic, everything.”
The second thing I learn about Nico is that he jokes as much as he moves: constantly. It’s possibly his humor that has kept him going; while CCHS isn’t fatal, it also isn’t trivial. Nico rattles off over a dozen names of friends he has lost to illnesses made worse by CCHS or to tragic mistakes like falling asleep off their vents. “It’s up to us, you know, to keep their names alive. We gotta keep telling their stories.” He says determinedly. Behind that determination, however, is a measure of sorrow: Nico has lost many friends and he admits that it’s difficult to find new ones. But when he feels like I’m asking too many questions about the sadness, anxiety, and risk of living with rare diseases, he noticeably steers the conversation to a happier topic.
“You don’t really have a choice about getting knocked down. You do have a choice between staying down or getting back up.” He points out, making rare eye contact with me.
At 31, most Americans are building resumes or families. Nico is helping to build a movement. His vision of the CCHS community is larger and more comprehensive than the original group that met once every few years.
“I think something every group needs to constantly work on is inclusion and evolution. Our group is no different. That’s why we had a paper newsletter for so many years and now we’re online. It’s why we were English-language only for a long time and now we have some volunteers who can translate for us. We began by talking mostly about physical health and medical issues, now we include mental health and social issues. Young adults with CCHS were the first people to begin discussing the emotional burden of life with a rare disorder.”
I ask him what else the CCHS Network needs to do.
“We need to keep raising money because that money goes right to funding CCHS research. We’re rare and we’re a small group, so nobody’s gonna save us. We save ourselves. We share research and medical articles on CCHS, but we also need to start dealing with practical questions. I mean, a young couple who find out their baby has this disability aren’t interested in medical articles right away. They need to know about trach care, venting options, and how to talk about CCHS with other people. Chances are that they’ll have to educate doctors and nurses about it all.”
Nico’s in-your-face advocacy didn’t come naturally. He wasn’t outspoken about disability issues and disability rights when I first knew him. He is an introvert and his family is private by nature; Nico thinks it took significant time for them to accept Nico speaking candidly about his disability. And while Binghamton-Nico is different from Philadelphia-Nico, the seeds of change were always there: his early championing of LGBT and mental health issues years ago influenced how he advocates for people with CCHS today. “Whether it’s gay rights or disability rights or any other issue, this is true: if you don’t talk about it there won’t be any progress. You make your own momentum.”
Part of Nico’s value as a patient advocate comes from the bonds he’s formed in progressive communities. He marched alongside Occupy Wall Street, handing out water bottles and band-aids to other protestors. He volunteered with a soup kitchen and still keeps in touch with the guests he served. When a local school district cut sex ed classes, Nico volunteered with a LGBT community center to talk about contraceptives and consent. He protested so much at city council meetings that he eventually got thrown out of Binghamton’s City Hall for promoting services for homeless people, something he still gets visibly annoyed about. Seven years later, though, the people that share his posts and donate to his CCHS fundraisers are those same people he spent so long helping. In the week since our interview I found myself back in Binghamton to see family, and almost everyone I talked to, from the city’s former Mayor Ryan to guests at Nico’s former soup kitchen, remember his name and deeds.
Nico cracks a grin when I mention my Binghamton visit. “The biggest thing I learned there is that you eventually need friends, allies, people in your corner. You can do a lot on your own, but you do more in a team. If we can work together to write a grant or help someone in need, then that’s what we’re gonna do. Eventually the CCHS Network will have to work with biotech or pharma companies to develop a cure, so it’s good practice.”
I ask him about partnerships the Network has formed already and he demurs, but he does offer some thoughts on rare disease partnerships in general: “I was at the Global Genes conference [for rare disease research] back in June, and I can tell you that most research hospitals and biotech companies recognize the need to work with patient advocacy groups. We are no longer ignored. There are maybe some researchers who think they can whip up a cure without patient involvement, but they’ll learn really fast that they need our input because without it they will go bankrupt.” He rubs his goatee briefly, “The market is real Darwinian like that.”
We pause so Nico can send an email to a CCHS family in Michigan. He signs off with an apology for replying so late. When I see his phone wallpaper it’s a woman with long black hair holding a long, black cat. He sees me looking and smiles. Nico is never short on words and each story is like a voyage.
He met Brittany online in April 2016. He noticed they were both AmeriCorps alumni and shared an interest in anime and Star Trek. At first he hesitated. He was unemployed and she mentioned wanting to eventually move to New York City. Nico was looking for a long-term relationship and she was only in the area to tend to an ill family member. But he took the time to send a few paragraphs and their first date was at a local Thai restaurant. The two now live together in Philadelphia, where she is a teacher and he is a financial administrator for a rare disease center. The couple got engaged in December and they share their apartment with three cats: Apollo, Hera, and Hermes.
“I dated some women for a year here and there, but we’d always break up whenever I finished school or moved states to take a new job. Brittany has really stuck with me.”
Nico claims to have been a nervous kid growing up, dealing with health concerns and wanting to fit in. Sometimes he’d descend into crying fits because he felt emotions too strongly, like a time when one or two misbehaving kids caused his entire class to miss recess.
“I think we get this message as kids, and this is especially true for boys I think, that emotions should be buried or that you handle difficult situations yourself. This is a bad message. It’s harmful. It took me a while to figure out that emotions and friends are strengths rather than weaknesses.”
I don’t see any trace of that nervous kid. Nico leans back in his chair, rubs his hand over stubble, peppers his sentences with “bro”, “dude”, and “man” regardless of gender, and fires off a quick message about different CCHS mutation types. To passerby, he is just a nerd reading a Spider-Man 2099 comic (he points out that it’s a different character than regular Spider-Man,) not one of the biggest names in a very small pond.
But why is he so busy? Why now? After living in a handful of different states and working tons of different jobs, Nico saw some patterns emerging for disabled youth. For one, he says, there’s a knowledge gap and a skills gap between the end of high school and becoming an established adult. The time you spend getting your health under control is time you can’t spend learning life skills. In fact, Nico reveals that he learned how to tie a tie and how to shave by watching YouTube videos.
“When I was on the job market, CCHS moms would always remind me ‘You need a job with good health insurance!’ They wouldn’t stop reminding me. I think they may believe it is easier to get a full-time job with benefits than it really is. Even if you have the schooling and the skills, it’s difficult. Even when you have insurance, it’s tough to understand it.”
So Nico made a checklist to help young adults and their families prepare for independent living. “It’s a conversation families need to have together. It’s not you versus your kid. It’s your whole family versus the problem.”
Other projects followed: a guide to seeking employment while disabled, a guide to CCHS care in schools, one-page factsheets about CCHS for families to give to doctors and nurses, a slew of public speaking appearances, mostly at comic conventions (his talk on disability representation in anime was rated the best panel at GeneriCon 2019, and he repeated the talk at Wizard World Philadelphia this summer.)
He talks animatedly about another idea: setting up a small fund to buy pulse oximeters and other vitals monitoring equipment. “Our bodies send signals that our brains don’t always catch, so we could be ill and not know it. If you have a machine that tells you your oxygen levels are low, that could be the difference between resting at home or exerting yourself and ending up hospitalized or worse. I haven’t fleshed this concept out yet though.”
He also wants to help people with CCHS explain the condition to others. “Stigma kills people and knowledge kills stigma. Our disability is nobody’s fault. It’s not contagious. We haven’t done anything wrong. It’s just the way it goes, dude.”
And he talks about money. Since being elected to the Board in 2015, Nico has worked hard to lead collaboratively and to consult others before taking action. It’s what led to his popular Dungeons and Dragons charity games, which raised several hundred dollars at the last CCHS conference. It’s what led to his “Faces of CCHS” project last November, which was shared on Facebook over one hundred times. His last fundraiser brought in several hundred more dollars.
“We need to make a difference AND get attention at the same time. Good cash flow lets charities steer their own ship; even $10 from a few people helps us go to rich people and say ‘Look, we have all these people participating. They believe in our cause. Will you believe too?”’ and then send them some cute baby photos. That’s a good pitch.” He smiles.
It’s clear Nico loves talking about CCHS and his work in disability issues, but getting to know the man behind the work is frustratingly difficult. I ask him about his hobbies like video games and hiking, but he says it’s difficult for him to find the time for those hobbies: “Sometimes I wish I could finally finish a game, but I don’t go ten minutes without needing to do something or reply to someone.” His lack of free time doesn’t seem to bother him. “Anyone can turn on a PS4. Anyone can read a good book. But not everyone can help a CCHS person or family in need. The work is the important thing here.”
Looking to the future, all Nico sees is hope, the word he has tattooed on his left arm. He plans on seeing a CCHS cure in his lifetime, he tells me. Until then, he’ll keep on making the CCHS journey easier for everyone.
“I think some parents are frightened when they realize their children are growing up in a very different world. And I think CCHS kids are scared by the responsibilities that come with being an independent CCHS adult. It’s less scary when you listen to each other and work together.”
Stigma kills people and knowledge kills stigma. Our disability is nobody’s fault. It’s not contagious. We haven’t done anything wrong. It’s just the way it goes, dude
Nico Meyering speaking about congenital central hypoventilation syndrome
“We love our @leoba — #bibliophilly superstar. Check out all her collation work at https://t.co/RRoWnfXwoz . Organized by PACSCL, powered by @OPENN17, funded by @CLIRHC . https://t.co/yqsI5SkLwR”
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