Walking for awareness

Milly Velez finishes the Caterpillar Walk in high spirits on Saturday. Photo courtesy of Ciara Serpa.
Raising funds for long-term solutions to fibromyalgia

The annual NYC Caterpillar Walk took place on May 5 at Pier 62 in Chelsea Piers.

Members of the Fibromyalgia Care Society of America hosted the event that unites people to spread awareness and raise money to support services for fibromyalgia. Fibromyalgia is a disorder that causes widespread pain and fatigue.

It started with a Zumba workout and opening remarks by the organizations founder, Milly Velez. Velez led the walk wearing the butterfly logo T-shirt paired with yoga pants and a white tutu. Fellow walkers donned green T-shirts with the same logo and cheered each other on. After the walk, raffle prizes — a butterfly painting, a commemorative ring, a Pilates session and more — were given out to lucky winners.

Velez said the estimated total of the funds raised for the NYC Caterpillar Walk was about $13,000. She said the money keeps the organization running, and pays for the expenses of the event.

Ciara Serpa, youth advocate for the organization, spoke to the crowd about her experience with fibromyalgia. Serpa juggles her coursework at Iona College while managing her symptoms. At school, Serpa asks herself the same questions everyday: is it worth it to walk to class, and should she take her medicine in front of her classmates — and be subject to their questions — or take it in the bathroom.

The hardest part about living with this disorder for her, is the stigmas. She said people who don’t know much about fibromyalgia are dismissive. Serpa said they would say “that’s just an old person’s disease.” She also deals with intrusive questions about it. “You kind of have to be very gentle and see that they’re coming from a point where they don’t know that that’s not okay to say,” Serpa said.

Her treatment plan is a mix of medication and meditation. She tries to make her treatments fun by trying different techniques, looking at new research, and speaking with other youth about spreading awareness. There is a list of other chronic and mental illnesses that someone with fibromyalgia could develop if they don’t get proper cares. “A life that you spend in misery is not a life, especially at this age,” Serpa said. “It’s really important to spread that support and that knowledge so that no one has to suffer alone.”

She describes her fibromyalgia pain “as if you put your hand on a hot stove and that impulse before you take your hand off, it’s that just all the time.”

“Each day you wake up and you don’t know what kind of pain you’re going to feel,” Serpa said. “It’s really scary to go to sleep and kind of feel like, ‘Am I going to wake up okay tomorrow?’”

Alexander Rogue is treasurer of the Fibromyalgia Care Society, and although he doesn’t have fibromyalgia, he’s familiar with it. “I grew up with a mother who had it, so for me it’s always been knowing that it’s important to care for people who are struggling with things that you may not know about,” Rogue said.

The organization started in 2015 and Rogue said there’s a growing base of people who are being empowered by the work they’re doing. The most powerful moment for him was when Ciara Serpa spoke.

What he wants others to know about this disorder is that it’s a condition that can affect anyone and is complex. “It’s such a difficult condition to diagnose, treat and live with that it’s actually considered a key to figuring out other difficult diseases,” Rogue said.

Velez is pushing the youth to speak out, because she feels that fibromyalgia is getting more attention. “I feel like they will be the ones that will really take this illness and be able to manage it and push the awareness piece as well,” Velez said.

Her son was diagnosed with fibromyalgia last September. Now she has to share her knowledge of what works to ease her pain with her son. His diagnosis was difficult for him to cope with, because he’s in the military.

She visited him and was “educating them on why the decisions they were making for his care were not the right decisions,” Velez said. “The sooner he’s out here, the sooner I can work with him to get him in a better place; and just dealing with the stress of the military is difficult.”

Velez hopes to turn over the walk to her son next year and giving him a leadership role. “I’m looking forward to that and letting him lead the community, because there are men with fibro too,” Velez said.