2017-02-24 / Front Page

Benefit to aid SoPo woman with rare disease

By Duke Harrington
Staff Writer


Standing in front of the new home for Willow’s Pizza, at 740 Broadway, where a March 3 benefit concert will help defray medical expenses for local resident Crystal Goodwin, who suffers from a rare autoimmune disease, are, from left, Willow’s owner Dave Lengyel, Goodwin, event organizer Darren Cook and pianist Seth Holbrook. (Duke Harrington photo) Standing in front of the new home for Willow’s Pizza, at 740 Broadway, where a March 3 benefit concert will help defray medical expenses for local resident Crystal Goodwin, who suffers from a rare autoimmune disease, are, from left, Willow’s owner Dave Lengyel, Goodwin, event organizer Darren Cook and pianist Seth Holbrook. (Duke Harrington photo) SOUTH PORTLAND — Crystal Goodwin has not drawn a paycheck in five years, but that doesn’t mean she doesn’t work.

“For me, it’s a full-time job just trying to stay alive,” she says.

In 2011, Goodwin, now 32, was working at the Opportunity Alliance Family Center helping children with mental disorders, while also attending classes in hopes of becoming a psychiatric nurse practitioner. Between work, school and friends, she led a full and active live.

But then she got sick. A lot. Starting in September 2011 she began to experience near constant intestinal pain. She developed flu-like symptoms that never seemed to go away. She broke out in hive-like rashes on an almost daily basis. Sometimes her face and joints swell up for no apparent reason. Eventually, doctors realized she was experiencing anaphylaxis, a severe whole-body allergic reaction to a chemical. But which one? After nearly a year and more than dozen doctors, Goodwin got an answer – all of them.

Goodwin has a rare disorder known as mast cell activation syndrome.

“The mast cells in our bodies that cause allergic reactions, they’re not working properly for me,” she said. “So, they’re constantly triggered. They’re constantly thinking I’m having an allergic reaction.”

You name it, and Goodwin has symptoms when she’s around it, up to and including lapsing into life-threatening anaphylactic shock. Latex, cigarette smoke, nuts, perfumes, household cleaners, gluten, most processed foods, shellfish, dust, lotions, pollen, sunlight, glue and adhesives – any of these can trigger a reaction in Goodwin.

“Basically, I’m allergic to the world,” she said. “They don’t know what caused it. I literally woke up one morning and I was suddenly allergic to things I used to eat, drink, touch or be around every day. I could suffer symptoms just walking down the hall of my old apartment building.”

Recently, Goodwin was able to move out of that apartment, where stray scents lingering in the air just coming and going from her home was a gauntlet that could land her in bed on her back for the entire day. These days, Goodwin has a place at Landry Village, with a private entrance.

With so many things in the environment a danger to her, Goodwin spends most days confined to her tiny apartment.

“It’s a very isolating existence,” she said. “I’m still really struggling health-wise. I feel like my condition has actually gotten a little bit worse, in terms of not being able to do as much as I could before. I’m even more housebound, more bedbound, than I was before. My doctors have not been able to help me make any progress, just because of the rarity of my disease. It’s really been hard.”

Not that Goodwin can travel far. Her license now restricts her to daytime driving only, of no more than 25 miles per day. Just driving that short distance can wear her out, because of the focus it requires, thanks, in part, to the disease, and in part to side effects of the 35-plus medications she takes daily.

And those medications don’t come cheap. Forced to live on Supplemental Security Income disability of about $21,000 per year, Goodwin declined Medicare because it does not cover some of the specialists and medications

See the show

The public premiere of Keys to the City, a “dueling piano” show that features Jim Ciampi and Seth Holbook, will be the first event staged in the function room of the new home for long-time south Portland restaurant, Willow’s Pizza, at 740 Broadway.

Proceeds from the event, staged at 8 p.m. on Friday, March 3, will help defray medical costs for South Portland resident Crystal Goodwin, who suffers from mast cell activation syndrome.

Suggested donation is $25, which includes food and entertainment, with a cash bar. To reserve tickets, contact Darren Cook by emailing dseancook@gmail.com, or calling 650-4146.

Due to the nature of Goodwin’s disease, concert attendees are asked to not wear perfumes or use scented soaps immediately before arriving. she needs, and because it was thousands of dollars more expensive per year in out-of-pocket costs than the price of private insurance purchased in the marketplace. However, in a Catch-22, because she declined Medicare, she gets no subsidy from Obamacare toward her premium, which runs to $330 per month, or nearly $4,000 per year, with a $6,500 cap on out-of-pocket costs for deductibles and co-pays.

Goodwin also has to eat a special macrobiotic diet, and use individualized personal care products, so her total health care costs per year are about $12,000 to $15,000.

“That leaves next to nothing to live on,” she said. “But I kind of had no choice but to opt out of Medicare, because the rules make it very hard for me to get by. And what makes it especially frustrating is that, on the days I am able to get out, people frown at me and say, ‘You don’t look sick.’ It’s so hard for them to understand what I go through.”

One person who does get it is Darren Cook. A Ferry Village resident, Cook is a personal trainer at Snap Fitness, where he met Goodwin.

“She told me about her condition, but it took a while for me to really appreciate what it was like to live with it, and the more time I spend with her the more I was able to see how it affected her life,” he said. “She’ll come in to the gym to try and get a little exercise, and seem fine, but all it takes is one small trigger – a person wearing perfume, or something as subtle as being near someone who has not showered after using a paper shredder and having dust from the paper on them.

Concerned for his friend, Cook has organized a fundraiser, in part because she has so few means of support.

“With cancer or other conditions, there are foundations and even support networks out there, because a lot of people are touched by it, but what Crystal is faced with is a very lonely endeavor,” he said.

Cook joined with another gym member, Seth Holbrook, a singer and musician in the Jim Ciampi band. Holbrook and Ciampi have recently formed Keys to the City, a comedic dueling piano duo. Soon after Willow’s opened at its new location at 740 Broadway, across the street from the gym, Cook and Holbrook met to have lunch and talk about how Keys to the City might aid Goodwin’s plight. A bartender overheard the conversation and, noting how Willow’s owner Dave Lengyel has a history of going out of his way to provide community support, made an introduction.

Lengyel was on board immediately.

“I loved the idea,” he said. “It’s the right thing to do. That’s what we’re about and that’s what our new space is about. We anticipate doing a lot more things like this.”

The Goodwin benefit will be the first event of its kind staged at the Willow’s, inits new location for just two months. The function room can accommodate a crowd of about 200.

The show will also be the first public performance of Keys to the City.

“It’s not just two guys playing piano,” Holbrook said, explaining the concept, which is expected to become a constant, ever-changing aspect of his and Ciampi’s repertoire.

“It’s very much a show. It’s a bit of a cross between a comedic play and a concert. It’s a three-hour show. In the first act, I play the dumb young guy, and Jim plays the dumb old guy – pretty deep characters – as we try to challenge each other on these connected keyboards. In Act II we realize we need help from the audience and it becomes more of an improv show, with lots of participation from the audience.”

“I think this event will be a win for everybody,” Cook said. “It’s a fantastic show and great food for the public at a low recommended donation, it’s a chance for Seth and Jim to spotlight their new act, which I have every confidence will become a popular attraction, and it’s a wonderful opportunity for people to see the work Dave has done on the new Willow’s and see this new event space that is available to the community. But first and foremost, it’s a chance for people to help out Crystal, who, before she got sick, was all about helping others. She did outstanding work for not a lot of pay in social services back in the day, helping at-risk kids.”

“I think if people knew the kind of person Crystal has always been, they’d want to step up and help out,” Cook said.

“It has been overwhelming at times, but one thing I have found over the past six years – there are a lot of kind, generous, caring people,” Goodwin said.

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