“I’m so tired
The hammer’s coming down again
I’m hardwired
All the signals cross and double back
Broken inside
There’s no fixing anything
How do i explain
I’m fighting every day to do the simple things?”
The lyrics to “Hammer,” written by Susie Ulrey of the band Pohgoh, probably ring true for most everyone with multiple sclerosis.
Ulrey’s story is similar to many of ours. Double-vision three days before her wedding in 2000. A visit to a neurologist three months later, but with no diagnosis. She writes on the website Talkhouse that “by early 2001, my hands grew so numb I couldn’t hold a guitar pick or land a chord.” It was back to the neurologist, and this time there was a diagnosis: MS.
Over the past two decades, MS has stolen a lot from Ulrey. Finger numbness and a loss of dexterity made guitar playing a challenge; for a while, it made it impossible. She can no longer walk, and if a venue’s stage doesn’t have a ramp, she needs to be carried on. But “music has been my solace and my sounding board,” she writes. “MS left me with a ton of baggage. Writing songs makes that weight a little lighter.”
Ulrey has persevered. She moved from guitar to electric piano and back again. She tours with her band even though, at one venue, she had to cross the street to find an accessible restroom. She still plays every day, even though, she says, “there are days when it’s an exercise in futility.”
The ‘Hammer’ music video
A time-lapse video of a digital painting of Ulrey by animator Michael Knapp has just been released to accompany “Hammer”:
“In this painting, I was trying to convey some of that strength and determination that Susie projects even as she lives with challenges that few of us can see or even imagine,” Knapp writes on the Spartan Records website.
Can you relate to “Hammer”?
Music can be magical for people with MS
Russian concert pianist Olga Bobrovnikova traveled a road similar to Ulrey’s. Her sight and coordination worsened because of her MS, making it difficult for her to strike a piano’s keys or press its pedals. Yet she eventually returned to the concert stage. “Music is a way out of my condition, and is the guidance towards the challenges, the new discoveries and relationships with people,” she told the South China Morning Post a few years ago.
Singer-songwriter Alu wrote and performed “Mrs. Hypochondriac,” a song she described as “a story of survival — surviving a brief tumultuous marriage, divorce, and MS diagnosis.” There’s also Kristen Henry King, whose song “Impervious” tells the story of how stem cell therapy changed her life with MS.
You don’t need to be a musician to benefit from the magic of music. MS News Today columnist Jenn Powell heals herself just by listening to music, using specific playlists to help her through physical pain, anxiety, and sadness.
It’s more than just sounds
Music isn’t the only creative activity that people living with MS use to motivate themselves while, in some cases, also spreading MS knowledge. Each month the Multiple Sclerosis Association of America website highlights the work of a visual artist who lives with MS.
There’s also writing. Working on my blog each week helps me cope with my illness just as much as I hope that what I write helps people who read it deal with theirs.
(A version of this post first appeared as my column on the MS News Today website.)
(Image by Colin Behrens from Pixabay)
