My TM Story by Laura Murray
I had no idea what transverse myelitis was. I had no idea what was happening to me and why I couldn’t walk. I visited 3 different emergency departments across the world: St. John’s, Vancouver, then Melbourne. My health had declined over a period of about 4 weeks, and I began to use a wheelchair for any movement. I knew something was wrong, despite all doctors being unable to offer an answer. Being dismissed by the third emergency room doctor claiming my experience was just increased pain following a COVID-19 infection, I became angry and frustrated. I cried and felt hopeless. Then something changed. I finally was heard and received the help I needed. The next morning, I got an MRI and the neurologist explained that I had inflammation in my spinal cord, a condition called transverse myelitis. I would get “an industrial dose of steroids” as he put it. After a few days, I felt stronger and returned home. But because I had not been given any steroids to go home with, the pain came back, along with the lack of movement.
With extreme paralyzing pain leaving me spending most of my day in bed, I turned to the internet. I searched “#transversemyelitis” on Instagram, found the SRNA, and things started going in a better direction. I found videos from a physiotherapist at an SRNA conference, and she said the most important thing to have in your evidence-based physiotherapy rehab was hope. I was able to attend an online meetup where I met other people who have been impacted by rare, life-changing medical conditions.
Even though some days are harder than others, and I’ve seen first-hand the holes in the medical system, I’m hopeful. I continue to go to various specialists with no one really knowing how to make this all go away. But I have hope with me. I’m back to my role as a Registered Music Therapist and Key Worker with families in a disadvantaged neighbourhood in my second home (Melbourne, Australia), and I’m back to walking my beloved dog. With pilates, hydrotherapy, acupuncture, massage, and my biggest motivator of all, music, I was able to tour Australia with my band “The Deadnecks”, serving as the backing band for M. Ward’s 20th anniversary Transfiguration of Vincent Tour. Life is still different, but I feel I can ask for the accommodations I need. And as my OT put it, “Save your energy for what matters most and get help to fight the fights you don’t have energy for.” Hiking is out of reach right now, and my morning walks with my dog aren’t as long as they used to be, but I’m hopeful. I share my story for anyone who needs to hear that having a little bit of hope can make a big difference while you find a way to get back to doing the things you love.
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