Musicians living with MS find inspiration in their conditions

How art perseveres in spite and because of what these artists endure

by Ed Tobias | October 20, 2023

“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 singer Susie Ulrey and the band Pohgoh, probably ring true for most everyone with multiple sclerosis (MS).

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.

ECTRIMS 2023: New research may help explain EBV and MS link

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.”

Listen to ‘Hammer’

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 music

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 “MS Wire” columns and my blog each week helps me cope with my illness just as much as I hope that what I write helps people deal with theirs. I’m sure the same is the case for the other columnists who write for MS News Today.

Do you have something creative you do that helps you to get through your MS day? You can share it with us it in the comments below.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Print This Page

About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

Tom A

I love antiquing and selling used items, the hunt (auctions & yard sales) and the sales. If you're on dissability, you need to keep limits in mind and use your spouse's ID, if you want to declare activity (lots of people don't).. I can still get around but it's harder. Ebay is always a challange even in a chair.

Ed Tobias

Hi Tom,

Sounds like a fun pursuit. I used to find some really beautiful, and fairly solid, handmade canes at craft shows, etc. Used to sell things like campaign buttons on ebay but haven't been on that service in years.

Marion Hounsome

Hi folks!
Yes, I can relate to the joys of creativity, whilst suffering from MS. I have, (apparently), "the most amazing singing voice", which, I guess. has been developing since my birth! I have always been very musical, mainly through the brass band world, and my singing! Oh, and I guess my Music Degree might have helped a bit! Hope you all have a fantastic day!
Marion Hounsome

Ed Tobias

Hi Marion,

I'll bet your musical talents have helped others, in addition to yourself. Thanks for posting this musical note. :-)

Lisa Miller

I was always busy wiwthout taking a day off. In 1989, I was under a lot of stress and I saw two different doctors for my blurry vision and intense fatigue. My opthamologist told me that it was optic neuritis. And that was it. It cleared up? The fatigue? OH! I only worked part-time for a few weeks. I stopped meeting up with friends, going to collegge at night and even taking my dogs for a daily walk. And then I returned to my crazy lifestyle until 4 years later, when again, I was under a lot of stress. I found a new job closer to my fiance. We were getting married. And my vision, once again, became blurred. Yep! I was told to get a MRI. Three days before my wedding date, I had my first procedure. So after a few days as newlyweds, the wedding present that I couldn't exchange for a toaster, was multiple sclerosis. I was familiar with MS. My parents were the guardians to one cousin who becmae quadreplegic due to MS. So I didn't tell my parents, I didin't tell them untils a few years later. My mom held up the phone to my cousin's ear, and I told him about my diagnosis and that we were once again, a team. MS and even more, have made me stronger! MS and more have made me appreciate every day. Make the best of today! I may fall. I may be fighting fatigue. I may live with a constant headache. I am not allowing MS to win. When I was told in April 1993, that my MRI indicated that I had MS, through tears I replied that MS had picked the wrong girl. The guy that I had married almost 31 years ago? I left him ater 27 years. i took the dogs and moved out. I am much happier! Duh! I got the dogs! He didn't want to have any children but without planning on it, I gave birth to a beaufiful baby girl when I was 41 years old. Today, I am 65 years old. My daughter is brainwashed by the ex and I don't hear from her. They both lack empathy. The ex is a narcissist. My daughter may have inherited a few of those traits. I only allow my challenges to make me stronger. Wine helps too. JoKinG. I love humor!!! No matter what you face, never surrender. My words to the neurologist back in 1983 and again, to the husband in 2020: "You picked the wrong girl." And to all of you: STAY MS STRONGJ!

Fill in the required fields to post. Your email address will not be published.

Musicians living with MS find inspiration in their conditions