On Touring and Songwriting with Multiple Sclerosis

Susie Ulrey (Pohgoh) talks accessibility and adapting creatively to chronic illness.

“Don’t let it take the sparkle from your eyes.” It was the perfect line to end the chorus: relentlessly positive, dripping with sentiment, a little too heartfelt, and more than a tad melodramatic. I’d just been diagnosed with Multiple Sclerosis, and I was writing a song about it. Looking back on it now, I can see I was writing from a place I thought everyone expected me to occupy: tough but sweet, determined but chipper. It was an acoustic song with a simple fingerpicking pattern. After finishing it I thought, How long will my hands let me play this? 

By 24, I’d already been writing and playing in bands in Florida for seven years. I cut my teeth in punk and indie scenes, booking shows, and releasing a 7” record with my first band before graduating high school. I played in a few more bands, toured a bit, almost signed with a couple of record labels. In 2000, I planned my wedding (to Keith, the drummer of the band) around potential tour dates. Three days before the wedding my first major symptom, double vision, made its appearance. I’d had other weird symptoms that finally led me to a neurologist a month after our wedding. MRI and all other test results were normal, so I continued on with my life. However, looking back, I may have been in denial about one thing: My mom, Danielle, had been diagnosed with MS about five years prior (though MS is not hereditary, there is a higher probability of being diagnosed if a family member has it). An MS diagnosis was honestly the last thing on my mind — maybe because more than anything, I refused to believe it could happen to me too. Avoidance is an intoxicating sedative. 

Yet, by early 2001, my hands grew so numb I couldn’t hold a guitar pick or land a chord. Having gotten the “all clear” just a few months prior, this new development was scary. I added it to a list that grew so long it warranted a trip to a second neurologist. Further tests confirmed that I did in fact have MS. I was diagnosed in October of that year.

In the 21 years since, I’ve had a litany of relapses and remissions — some which I’ve never fully recovered from. After that initial song I wrote after my diagnosis, I took an involuntary sabbatical from playing for a few years. I was still reeling and trying to figure out how to get through my days. Prior to my diagnosis, my guitar was an outlet for expression. Afterwards, it sat in a corner collecting dust.

Music lights the spark in my heart.  It isn’t a choice or a decision to find a way around my clunky hands; it is a necessity. As dogged as my quest to find ways to treat MS, I continue to look under every rock to find new ways to keep creating. I was never an impresario when it came to guitar.  I’m a songwriter who uses a guitar to communicate my ideas. I’ve always presented what I’ve written, and we get to work as a band to arrange it. I’ll play along with basic chord progressions with maybe a plunky one note lead here or there. But the day came when I couldn’t play at all. So, I switched to a Wurlitzer electric piano for about 10 years, teaching myself and writing, albeit at a much slower pace. My feet refused to cooperate, so I ignored the keyboard sustain pedal altogether and Velcroed my effects pedals to the top of the piano to hit with my hand at pre-rehearsed intervals. Complicated? Absolutely. But at that point it was easier than playing guitar. 

Over the years my hands improved, and I started to work guitar back in. I eventually moved back to guitar full time, and though I play every day, there are days when it’s an exercise in futility. I still have numbness in my fingers and a loss of dexterity that leaves me unable to button shirts or wear earrings with backs — it’s a struggle to play with those deficits. Tracking guitar is painstaking and time consuming. Over the years it’s been gently suggested to me that I think about switching to an open tuning to make things easier, but I’m not quite ready to rethink my approach to every song I’ve written in the last 30 years. I also trust the people I play with and I know they will tell me if/when it’s time. Will I need to put the guitar down one day? Maybe. Probably? I’ll figure something else out. I’ll have to.

I haven’t even touched on the logistical challenges of playing in a band with a disability. Yes, my hands are beyond clumsy. I’ve also progressed over the years from being completely able-bodied to walking with a cane, then a walker which further devolved into requiring a wheelchair for longer trips. As of 2015 I became unable to walk, which introduced yet another set of challenges as a musician. When my band Pohgoh plays, I must be carried on stage, unless the venues have ramp access which is rare in DIY spaces. My mic stand has a tray so I can easily reach key items I might need during the set in order to avoid bending down and potentially falling over. I have a small area rug with lines to mark exactly where my folding chair and pedalboard should be placed because once my butt is in that chair, there is no readjusting. I keep my right foot perched for the entire set on a distortion pedal that is so worn in, it requires the lightest tap to switch it on. My tuner is set on bypass, so I don’t have to click it at all and the rest of my pedals are lined up on our bass player Brian’s pedalboard. He acts as my auxiliary foot hitting my fuzz, delay, and tremolo pedals for me. 

Touring is a completely new endeavor that involves attempts to find accessible venues which then in turn requires extra legwork on our end to discern what their definition of “accessible” is and if a show would even be feasible. I’ve had to leave a venue and go to the grocery store across the street to use the restroom because I can’t get to theirs. Not to mention lack of access to backstage areas. Getting me in and out of the van is a choreographed exercise that we now have down to a science. During load in and load out I’m rendered useless and if the merch table is up a couple of steps, I’m out of commission for that. I can’t help out with the driving either — at home I use hand controls to drive my ramp van but in a 15-passenger van, I can’t even get into the driver’s seat, much less drive. It’s an odd combination to feel like a burden while also knowing that you’re simultaneously wanted and needed. My bandmates are helpful without a whisper of a complaint, but I know I’m asking for a lot because I know it takes a lot.

It’s hard to extract my relationship to music from my experiences with MS. The punk ethos that shaped me as a teenager (thanks to bands like Fugazi, Bad Religion, and Jawbreaker, to name a few) also informed my approach to an open-ended disease with no clear prognosis. It gave me the agency to constantly seek, speak up when I had questions, and be my own advocate. Music has been my solace and my sounding board. MS left me with a ton of baggage. Writing songs makes that weight a little lighter.

There are so many complexities to having a chronic, incurable, disabling disease that attacks your central nervous system and can affect any part of your body. I met a woman a few years ago who’d been diagnosed around the same time as me who was able-bodied but almost completely deaf — MS had damaged her auditory nerves. I could say I’m grateful it only affected my legs and hands if it weren’t for the fact that I’m still pissed it exists in my life, period. But if it had taken away my ability to sing or hear or speak, I would be a hollow shell. I’m also 100% convinced that writing and playing all these years has kept me more mentally acute than I would be without it. The coordination required, taking ideas and forming them into complete song structures, writing melodies and memorizing lyrics, learning and counting out parts, working with different time signatures and alternate arrangements — all of these facets ignite every part of my brain. And they bring me so much joy. It’s a win/win scenario.

Can I still play the song I wrote in 2001? No. But when I realized I couldn’t, I took it to my bandmates. They turned it into a beautiful dirge with droney keyboards and a wash of guitars that perfectly captured the mood I was after. It wasn’t what I originally had in mind, but it turned out better than I imagined it could. That’s the kicker, isn’t it? I couldn’t really see that perspective until it was being typed just a few sentences ago. Very few things I’d hoped for in my life have come true in any of the ways they were “traditionally” supposed to. Through all the little deaths MS wrought in my body over the years, I’ve still been able to make something beautiful out of what’s left thanks to the ever-present gift of music in my life. 

Susie Ulrey fronts the Tampa, Florida-based band Pohgoh. Their latest record, du und ich, is out now on Spartan Records.