This spring, Raquel Barnes, 58, sat in her neurologist’s office, hoping for a diagnosis that would explain away the variety of physical ailments ranging from a chronically sore hip to carpal tunnel syndrome and, most recently, trouble speaking and swallowing that have been afflicting her.
“When they went over what it could be, when I heard the letters A, L, S, my blood ran cold,” she said.
Despite her hope that her doctors would come up with another cause, Ms. Barnes received word on June 23 that yes, she was suffering from amyotrophic lateral sclerosis, or Lou Gehrig’s Disease, a degenerative muscle condition for which there is no cure.
Ms. Barnes, who grew up in Sag Harbor and has been a teacher with Head Start for the past 20 years, most recently at the Children’s Museum of the East End in Bridgehampton, is no longer able to work with the children she loves.
Meanwhile, as her medical bills mount, her friends have launched a GoFundMe page to help her cover her costs. As of Monday, August 10, $13,445 of a goal of $50,000 had been raised.
“I’m very lucky, I have a great support system,” she said this week. “While I was waiting for a diagnosis, I didn’t tell anyone. But since we put it out there, the community has been great. People I haven’t seen for 30, 40 years are calling to offer support. It’s a wonderful feeling to have grown up in Sag Harbor.”
Looking back, Ms. Barnes said she believes ALS began to manifest itself about four years ago when she had hip and back issues that made it hard for her to walk. Extensive physical therapy and hip replacement surgery followed, but to no avail. She was treated for bursitis, tendonitis, and rheumatoid arthritis.
“My left side was so weak, but nobody questioned why,” she said. “The more I worked on it, the worse I felt. That should have told me something right there.”
Later, when she developed carpal tunnel syndrome, Ms. Barnes said cortisone shots did not provide relief. Instead, her arms grew weaker. “I thought it was because I wasn’t exercising my arms enough,” she said.
Linda Keller said friends were alarmed when they met around Christmas last year and noticed that Ms. Barnes’s speech had changed, to the point she was having trouble forming simple words. Ms. Barnes said she thought she might have had a minor stroke, but tests came back negative
Ms. Barnes said another friend, Gerrianne Hurney, helped her navigate the health care system last winter so she could have appointments with the neurologists who eventually offered her the grim diagnosis.
Ms. Barnes said she wants to remain independent as long as possible, and said she still lives on her own, in a mobile home in Westhampton. She drives, shops, and cooks for herself. But, she said, she is aware she is slowing down and admitted climbing and descending stairs are more difficult. She is now looking for a two-bedroom apartment, so she can have live-in help.
Coming to grips with her condition, emotionally and spiritually, has proven to be a challenge. She has suffered through long crying bouts when she can’t hold her emotions in check, and questioned God why she had to be so unlucky.
“I kept asking, ‘Why me, God?’” she said, “until finally it came to me, ‘Why not?’”
Ms. Barnes said her faith had given her strength and she plans to continue fighting the disease. She said that over the past few years, major funding has been invested in finding ways to arrest ALS, and that several recent clinical trials had shown promise. “So there is hope,” she said.
Donations can be made to Ms. Barnes’s Go Fund Me page at Gofundme.com/f/help-raquel-in-her-battle-with-als-lou-gehrig. For more information, call 631-599-0973.