Becky Johnson offers a candid glimpse into life with dystonia—the pain, the loss and the reshaping of self-identity. But with this comes faith, determination and a personal promise to ‘leave no stone unturned’ in her efforts to navigate this new “foreign land”

Written by Becky Johnson

Today is 30^th September 2022. For the past two months, I have been navigating the terrain of a neurological disorder called dystonia. The first whispers of symptoms arrived on 3^rd August 2022, culminating in an emergency room visit just nine days later. That crisis, however, carried a hidden mercy: unlocking the door to a renowned neurologist I had seen a decade ago. In a world where patients often languish on year-long waiting lists, I was ushered in with a speed that felt like a quiet miracle.

My neurologist is a seasoned navigator of this condition, having treated dystonia for 12 years. His deep understanding of this rare ailment feels like an answered prayer. My current regimen consists of botulinum toxin treatments, (commonly known as Botox), every three months; this neurologist believes we can coax this condition under control within a year. This timeline is a bittersweet horizon—simultaneously a beacon of hope and a daunting mountain to climb at the same time.

Dystonia is a rare, incurable, and hereditary shadow, one that also touched my grandmother. It belongs to the same sombre family as Parkinson’s disease—a glitch in the body’s internal wiring that causes nerves and muscles to clash. Dystonia offers the potential for remission. For that, I am hopeful and thankful. Though it is meant to be confined to my neck and shoulders, I’ve noticed a treacherous weakness creeping into my right hand and foot. 

The casualty of a shattered dish, a stumble, my chin locked on my clavicle with bruising sometimes, while pulling and shaking ensue at other moments, I am pushing forward with everything I have. Driving remains impossible; my head a lot of the time as noted before is held captive, locked firmly to the right by an invisible, iron hand.

This forced stillness has required a painful surrender. I’ve had to relinquish the rhythm of daily life—errands, the children’s appointments, the roar of high school football games and a career I am desperate to pursue.

It is a humbling, often humiliating, stripping away of self. Between the heavy shroud of medication and the way the spasms in my neck greedily devour my energy, my stamina is a flickering candle. I can remain functional for only an hour or two before my body demands the sanctuary of sleep. Still, I find joy in the metrics: when this began, I could only manage twenty minutes.

My people who are 100% for me have been nothing short of extraordinary. People have emerged from the woodwork like guardian angels, offering love and labour in equal measure. I am equally proud of my own commitment to mental fortitude. I am working with a counsellor who is finely tuned to my frequency, helping me process the heavy debris of this emotional season.

Migraines often explode when the neck pain peaks—a storm surge triggered by the stress of the body’s civil war. For a time, reading and walking felt like navigating a foreign land as I was unable to track with my eyes, but my brain is slowly “assimilating”, learning to translate the world again without the fog of disorientation.

I am throwing every tool in my arsenal at this: physician therapy, the aromatic comfort of oils, Acutherapy and HeartSync practices—two healing modalities I was certified in, in the past few years preceding this disease. I also regularly engage in holistic strategies like deep breathing, emotionally focused therapy (EFT), tapping, positive internal self-talk as well as exercise to help.

My husband is a constant support, attempting to massage the places where my muscles have turned to stone. My diet has been overhauled into a blueprint for healing, and my nightstand is a mosaic of muscle relaxers, medications and anti-inflammatories.

We are now looking toward a ‘movement specialist’ in Colarado—a specialty so rare the waitlists are measured in years. In the meantime, I find solace in mindful podcasts that connect me to Jesus and lose myself in audiobooks when my eyes need rest. Some days, sleep claims sixteen hours of my life; other days, I find small windows of productivity. My sweet family has been thrust into a whirlwind, learning to dance to a new, difficult tempo as they take over the roles I once filled.

The horrendous battles of insurance and disability have been far less kind. Despite assertive advocacy, we have found no favour there. The financial desert we find ourselves in, is a journey that demands both creativity and a humble spirit. My family and I are surrendering our old expectations of the future, kneeling in gratitude for every gift that helps us bridge the gap.

To those of you who have found yourselves walking the jagged path of a rare disease, I offer you this: be strong, but do not mistake strength for silence. Strength is not always a roar; often, it is the quiet, stubborn “not today” you whisper to your body when the symptoms try to claim your spirit. 

If you are currently in the thick of the fog, remember that your identity is not the diagnosis. You are the person inhabiting the experience, not the experience itself.

---