By Carly Colvell got a special surprise this past holiday season. The 43-year-old was diagnosed with ALS, or Lou Gehrig’s disease, in 2019. She used to work in the marketing department at Northwell Health and has been documenting her struggle with the disease in a series of blog posts online.
The facility is home to The Nurse Choir, a group of frontline nurses who started performing together during the pandemic in 2020. The singing nurses recently visited Colvell at her home in Plainedge, NY to wish her a happy holiday.
Winnie Mele, choir member and Director of Perioperative Services at Plainview Hospital, said it was a “magical” experience she will never forget.
“When we got invited to sing for Carly, I think I can speak for all of us, that was the most emotional gig that we did,” Mele says. “Every song we sang had a message of hope. Here’s this girl in this wheelchair who feels hopeless, yet every song we sang had to do with hope and things are going to be better and lean on me and don’t worry.”
ALS disrupts the nerve cells in the brain and spine that control muscle movement. Patients slowly lose their ability to speak, walk, and even breathe on their own. Colvell wrote she has been dealing with grief and depression as she learns to live with the disease.
“Each change is emotionally destructive,” she posted online, noting that she has 24/7 nursing care. “My whole body has changed. I no longer can use my arms, hands, or legs, and the most painful has been the loss of my head and neck muscles, which causes head drop.”
“I really need help accepting this change. I’ve lost just about all of my dignity. You don’t know how strong you are until you have no other choice. Isn’t that what they say?” Colvell added.
The Nurse Choir was on hand to lift her spirits. They pulled up in her driveway and started singing a slew of holiday classics. Colvell and her family came out to greet the healthcare workers and express their gratitude.
“I think because we’re nurses, whenever we do anything that has to do with the sick or health care it means so much more to us,” Mele says. “She’s crying, her husband’s wiping her tears, the nurses suctioning her trach, the whole thing was so emotional.”
“You read her blog posts and I can hear in her voice now that she’s losing hope,” she admits. “We had an opportunity to bring her joy. And I think it wasn’t all about Carly. It was about Carly’s husband. It was about the kids, the nurse, her mom, her sister. You know, it was just a minute of fun and we tried to make it celebratory.”
Image credit: Northwell Studios Photography
