No matter how you look at it, the losses associated with the progression of ALS are always difficult and hugely significant.
For artists, this loss goes beyond the inability to make a living or participate in a favorite hobby. Painting, writing, singing, playing music and other art forms are artists’ means of expressing themselves, thereby releasing their internal stressors and emotional energy.
Artists with ALS can lose not only function but that coping strategy, says Rebecca Axline, a clinical social worker at the MDA/ALS Center at Methodist Hospital Neurological Institute in Houston.
Grieving the loss
|With a sensor taped to her forehead, Worsham can “paint” with her computer.
Artists’ work often is referred to as their “soul,” and taking that away stifles a huge part of their identity, Axline says. Like other losses experienced by people with ALS, the loss of creative expression sends artists through the grieving process.
But grieving can pave the way for the next step, which is making a choice about whether or not to continue making art, even if it means changing the way it’s created.
When ALS progresses quickly, people often don’t have time to adjust and adapt, says Axline. But a slower progression allows artists time to set goals, use adaptive equipment, become expert at it, “and share their gifts with others.”
Letting go of “old ways”
“What I’ve witnessed with our patients is that there’s an initial grief reaction and then many of them are so resilient that they adapt, they develop ways of expressing themselves in other aspects,” says Axline. “Maybe they can’t do it the way they used to do it, but that doesn’t necessarily mean they can’t do it at all.”
|An example of Worsham’s artistic direction since ALS
Erin Brady Worsham of Nashville has been an artist all her life, but after receiving a diagnosis of ALS in 1994, she took a five-year break from art.
“Not only did I lose the heart to do it, I rapidly lost the muscles I needed to hold the pencil or brush,” says Worsham, 49.
“It was difficult to accept that I couldn’t work with my hands anymore, but at some point, I realized that the art inside me had nothing to do with the outer accoutrements of the craft (i.e. pencil, brush, canvas, etc.),” says Worsham, who uses a power wheelchair, ventilator and communication device. “Once I let go of the old ways, I was free to learn a new medium and explore its possibilities. Thank God for technology!”
Her husband, Curry, discovered that she could create art on the computer by using her communication device. Worsham uses the device to operate a Microsoft Paint program, via a sensor taped to her forehead.
“Because I can no longer spontaneously talk to people, my artwork has become a means of communicating my thoughts and feelings,” says Worsham. “In addition, it identifies me as an artist, rather than an ALS patient. Many people look at my paralyzed body and think there’s nothing going on inside. My art shouts to the world that I am very much alive and kicking within! Most of all, art gives my life focus and purpose.”
Finding ways to stay involved
An occupational therapist (OT) can help find adaptive equipment that allows you to continue creating. If art is your career, and adaptions are needed to continue earning income, the state vocational rehabilitation department may help you find appropriate assistive technology, and often covers the charge.
Maybe there aren’t any ways to adapt your chosen form of art, or perhaps your adaptions no longer work. In these cases, Axline recommends staying involved in anyway you can, from teaching an art class to volunteering in an art museum or critiquing other artists’ work.
Axline tells of a woman with bulbar-onset ALS who used to sing in a women’s barbershop choir. Although she no longer can sing with the group, she continues to attend practices on a regular basis, critiquing performances and giving feedback.
“She still feels sad that she can’t sing, but she finds that at least she doesn’t have to lose all of it,” Axline says, noting the woman still enjoys the emotional, musical and social benefits of the group.
'Do some rearranging'
|Freddie Everett, before giving up performing. Photo by Angela Walling.
A singer and songwriter who could play the guitar like Jimmy Hendrix, Freddie Everett of Houston, opened for such big names as Ted Nugent, Sammy Hagar and Alice Cooper, and recorded with Stevie Ray Vaughns’ band, Double Trouble.
Everett, 48, had been playing the guitar for 25 years when ALS forced him to stop in 2004 because he couldn’t get his fingers to “work right.”
“It felt like I had died,” Everett says of no longer playing. “Nothing can take the place of playing my ‘axes,’ but having something that can help you express yourself and make others feel good is still worth trying to achieve — you just may have to do some rearranging.”
Everett stopped singing in 2006.
After conferring with friends and other musicians, he and his wife, Annette, came up with alternative ways to express the music in his soul. Recently, he began composing music and lyrics in his head and having Annette write them down.
“I prefer to actually play my instrument, but I need to get the music out of my head somehow,” he says.
It’s important for people with any kind of devastating illness — and most certainly for artists — to seek information, support and counseling, whether through an MDA support group, counselor, social worker or psychologist, advises Axline.
She also recommends communicating with artists with ALS or other disabilities as a way to find others experiencing similar issues. Finding similarities helps people know they’re not alone and that their feelings and experiences are normal.
Interested in showing her work at exhibitions and festivals, Worsham regularly checks UCLA’s National Arts and Disability Center calendar.
It was at one of these events that she read about a Web-based group for artists with disabilities in Australia called Tech-Art. Unfortunately, the group is no longer active, but Worsham benefited from communicating with its members.
“When you’re an artist, it’s stimulating to interact with other artists, regardless of whether they have a disability,” she says. “A group like that can be a positive experience for any artist.”