The journey, not the destination
Written by Becky Johnson
Diagnosed with dystonia in 2022, Becky Johnson tells her story of living with RARE and how she is navigating a “new normal”
To my spine: I implore you to mend. This past month, the hospital’s sterile halls have twice more been my stomping grounds. Tomorrow brings a pivotal summit with a new neurologist to help me navigate dystonia, a rare and incurable neurological movement disorder. While my esteemed doctor retreats into the quiet world of research, I get to meet with a new neurologist, who is kind, a compassionate listener. I can already tell they are ‘for’ me, and willing to go the extra mile. I thought I would be further along since my diagnosis in August of 2022 and could have returned to my life of 23 years of teaching/education by now. I am still learning my “new normal”.
I stand in profound gratitude for the deep brain stimulation surgery I underwent in March, even as the calibration process reveals itself as a marathon rather than a sprint. We are currently fine-tuning the programming in my brain; I believe we have finally composed the most harmonious “symphony” of signals within my brain thus far. The process of titrating medications has not been easy, but successful, I think. We are considering re-enlisting botulinum toxin (commonly known as Botox) as the twitching and pulling continue in my neck and trapezius muscles. My physical therapist and counsellor serve as my north star; I cannot fathom navigating this disease without them.
Life refuses to return to a traditional rhythm. I am striving to traverse this terrain with psychological grace, enforcing kind boundaries and summoning grit. My heart overflows for my husband, Quin, my teenage children, my parents, Quin’s extended family and dear friends.
To counter this moment in time, I am choosing to utilise every tool I’ve learned. I am actively clearing away stress to allow my neural pathways and organs to flow as they were originally designed—unobstructed and vibrant. I am choosing to anchor myself in goodness, refusing to play host to the negativity of others.
I also have been able to offer help and a listening ear to others who are seeking healing in some capacity. This has been pivotal; continuing to be of service to others as I receive help myself. That, and continuing to learn through various forms of online classes, books and podcasts. I was just asked to be on the board of ‘Beat Dystonia’, a non-profit run by Rogers Hartmann, so my life is full in both beautiful and difficult ways.
I choose to move forward, not by chance, but by conviction. Dystonia, you chose the wrong gal to mess with.
Rare Patient Voice are the proud sponsors of the Patient Voice section of RARE Revolution for February, March and April 2026. They provide patients and family caregivers an opportunity to participate in all types of research including market research, health economics outcomes and real-world evidence, user experience/human factors studies and clinical trials. The RPV community includes over 185,000 patients and family caregivers across more than 1,500 diseases, both rare and non-rare, in nine countries. Learn more here.
