(Host) Nineteen-year-old Jocelyn Woods is a talented composer and pianist who suffers from a neuro-muscular disorder. For the last 18 months, she’s been in a hospital bed in an upstairs room at her family’s small home.
Her parents are trying to change that, but as VPR’s John Dillon reports, there are many obstacles.
(Sound of piano music, “Redpath”)
(Dillon) Music is Jocelyn Woods’ life and passion. When she was just 16, she released a CD with pieces by Bach, Mendelssohn and Schumann, along with seven of her own spare and meditative compositions.
Harpist Christina Tourin counts herself as one of her fans. In an interview two years ago with VPR, Tourin recalled how she first met the young pianist.
(Tourin) “I played a concert at the Brian Gallery in Jeffersonvile. And after I played the concert, I got an email from a young woman, at the time she was 15. And she said that she loved the music. She told me she was the person there who was in the wheelchair. And she said would it be okay if I listened to the CD that she was recording. And she sent it to me. And I was absolutely blown away. Her music is very much in the style of George Winston.”
(Dillon) Woods was born with Spinal Muscular Atrophy Type 3. The disease weakens muscle tone and limits walking and other physical activity.
People with muscular atrophy have a normal life expectancy, but they often have orthopedic problems. In Jocelyn’s case, it’s scoliosis of the spine.
(Karen Woods) “I’m Karen, this is Shirley, she’s a PCA that works at Lamoille Home Health, and she helps with Jocelyn. That’s Maggie over there in the crate, all dripping wet. (Sound of dog whining.) She keeps escaping.”
(Dillon) Jocelyn’s mother, Karen Woods, makes the introductions at her kitchen door. Maggie is a very rambunctious Labrador retriever who also works as Jocelyn’s therapy dog.
Despite her illness, the young musician was able to keep up a busy performance schedule. Two years ago, she played live in VPR’s Performance Studio. She collaborated with Christina Tourin and performed in concert to promote her CD, titled a “River’s Journey.”
But then she came down with the flu, and her condition sharply declined.
(Woods) “Well, she’s been bed-ridden for about a year and eight months.”
(Dillon) Karen Woods says that doctors haven’t really figured out why Jocelyn hasn’t bounced back. And the illness has taken a toll on her music.
(Karen Woods) “On her strong days, I can help her over to her clavinova, which is right near her bed. And she can play for about 11 minutes a day, as opposed to what she used to do, which was two to three hours a day at her regular piano.”
(Dillon) For almost two years, Jocelyn’s world has been the four walls of an upstairs bedroom in her family’s Cambridge home.
The house is small and the Woods want to build a room on the ground floor so Jocelyn can get outside in the fresh air. There’s a safety issue as well. Jocelyn’s father, Joe Woods, has a heart condition and it would be hard for him to carry his daughter outside in case of an emergency.
But the family says the most important thing is to give Jocelyn a chance to once again feel the sun on her face and see the outdoors. They hope the change will help with her recovery:
(Joe Woods) “She’s not in a real nice situation. It’s been very difficult for her, being 19 years of age and seeing everybody else flying at their will to whatever. And she doesn’t have any wings.”
(Karen Woods) “I’m basically trying to save Jocelyn’s life. Because it would be easy to just leave her there, and just let her decline, pine away and decline in health. But I want to provide an environment for her where she can feel more alive, and that she’ll have room to breathe. She’ll have access to the outside. She’ll have a bathroom for her to wash in.”
(Dillon) An extra room with plumbing and a walk-in shower for Jocelyn’s hospital bed isn’t cheap. One contractor put the price at between $30,000 to $50,000.
The Woods are researching grant and loan programs to help pay for the work. The Vermont Center for Independent Living has some grants available for bathroom and wheelchair ramp construction, but there’s a two to three year waiting list. They also may not meet the financial guidelines to qualify.
Joe Woods runs a carpet cleaning business. But his income dropped after he got sick himself two years ago. Then in February, doctors diagnosed atrial fibrillation, a cardiac disorder that throws his heart into erratic rhythms. With his debts piling up, he’s decided to file for bankruptcy.
Karen Woods isn’t filing for bankruptcy, and she’s now trying to get a home equity loan to pay for the room.
(Karen Woods) “I want to provide that for her, because she’s a wonderful person, she’s my friend, my daughter. She is an incredible gifted and talented young woman, and she has a lot to offer. Her life is her gift to people, especially in the area of her piano playing.”
(Dillon) Jocelyn Woods speaks eloquently and without self-pity. She lies on her left side in her bedroom as her mother gently smoothes a blanket over her feet.
(Jocelyn Woods) “Being physically challenged is definitely an essential part of my inspiration. It’s led me to many deep inner contemplations. It’s led me to find out who I am and to really contemplate the purpose of life and what I am able to give to other people. It’s sort of been a vehicle for my music to be freely expressed.”
(Dillon) Jocelyn says a larger room will help with her physical rehabilitation, and make her feel part of the world again. Right now, she says she feels trapped.
(Joeclyn Woods) “It’s like being in hiding for two years, or being in exile from what I love to do. It’s very agonizing.”
(Dillon) Hope takes many forms, and for the Woods, their hope is that new surroundings will make Jocelyn healthier. Jocelyn says she struggles at times with the burden of her illness.
(Jocelyn Woods) “The times that I’ve been most ill are the times that I’ve really had to question why I still want to be here. And during those times, it’s almost a sense of moral responsibility to be someone that can have not only the creative fulfillment on my own but to give it to others, because I’ve seen it. I’ve seen it happen where people have come to me in tears saying how it’s completely changed their life and how they view life. And that’s not something I can just throw away or let go in my mind. I have to carry it through.”
(Dillon) The Woods say they’re pressing ahead to find money to build the room. But for several reasons – some programs are just for military veterans, for example, while others target people with very low incomes – they haven’t yet found one that fits their needs.
For Vermont Public Radio, I’m John Dillon in Cambridge, Vermont.