“You have cervical dystonia“, said my beloved family doctor of 20 years. He was almost exuberant, relieved to have finally uncovered the mystery of my severe neck pain, head tremors, and neck twisting that had started 5-6 years prior. With a diagnosis finally made, I was referred to a neurologist. “A neurologist?”, I thought. As I would soon learn, my condition wasn’t directly an issue with my neck but instead, it was an issue with my brain. In cervical dystonia (as well as other forms of dystonia) there is thought to be a part of the brain called the basal ganglia that is not communicating correctly with the muscles in my body, causing some to have excessive, uncontrolled movements while others are unable to move enough or at all. The basal ganglia have other functions as I will mention later. Navigating the world of medicine and doctors, I found that it is often hard for people with dystonia to get clear guidance on how to treat the disorder. I began receiving the first line of treatment: botulinum toxin injections to help decrease my muscle spasms and rigidity. Yet, I knew this only relieved the symptoms and did not answer my questions about the actual cause and other possible treatments of the disorder.
After 2 years of self-education and advocacy, I was fortunate to meet a knowledgeable physiatrist with specific training in CD. Dr. Trate not only knew much about the condition, but also had an impeccable desire to see her patients improve. She performed a series of neurological tests, one of which indicated that when I used my hand to perform tasks such as writing and cutting, my tremors and neck spasms increased. This, along with several other neurological tests, indicated that my brain was indeed not functioning correctly. She pointed me in the direction of several resources. The one I was most interested in was about the topic of neuroplasticity. Neuroplasticity is based on the idea that the brain is “plastic” or in other words “changeable” and can heal itself. In the case of dystonia, this involves using specific exercises to retrain the brain and relearning neural connections lost due to the disorder. This can be a long process, taking months or years of daily practice to acquire rehabilitation. However, there are documented cases where many patients with a variety of neurological disorders have used this technique to regain what is lost and their brains would improve as indicated on MRIs. As I began studying this, as well as the many aspects of dystonia, I felt as if puzzle pieces were falling into my lap. One discovery was that in addition to my neck, my hand is also impacted by dystonia.
A vivid childhood memory immediately reemerged. I recollect that I had received Occupational Therapy when I was around the age of five. I do not recall the reasons for the services. However, I vividly remember a stern, impatient woman coming to our house and working with me at our kitchen table. She instructed me to draw straight lines, circles, and diagonal lines repetitively on lined writing paper. I can recall each detail including where I was sitting and how the stern woman firmly criticized my circles. I remember that my hand was cramping, and I found the task to be so excruciating that I broke into tears. I continued to struggle with my handwriting through school and it only worsened in college when I was expected to write long essays and papers. I remember taking long breaks between paragraphs to rest my hand. I assumed it was simply writer’s cramp and thought nothing of it.
Another puzzle piece emerged as I learned about the hypertonic (overactive) and hypotonic (underactive) muscles that often impact a dystonia sufferer’s posture. I specifically recall as a teenager being constantly chastised to pull my slumped shoulders back and stop tilting my head to the left. I would see myself in a photo and grow determined to manage my posture but to no avail. My muscles seemed too weak to hold my shoulders back. As light continued to be shed in my research of movement disorders, I found other issues that could likely be attributed to my diagnosis. While most kids are ecstatic about PE, I dreaded it profusely. I seemed to lack the hand-eye coordination of most kids my age. I would attempt to shrink into the background not to bring any attention to myself; hoping and praying that no one would throw me the ball.
Sensing my frustration, my oldest brother, Walter (21 years my elder), enrolled me in ice skating lessons at age 7. As I watched the older girls beautifully glide across the ice, I knew I wanted to be one of them. I would spend the next 30 years figure skating in competitions and local ice shows. Yet, another puzzle piece emerges. I had to work harder than most to execute the skating jumps. With determination, I would spend hours practicing the same jump repetitively. It was difficult to find the exact timing so that my leg muscles would propel me off the ice while subsequently kicking the other leg through to land the jump successfully. I would often excitedly complete the jump at one session only to lose it the next time I was on the ice. On the opposite spectrum, I was an excellent spinner. I could execute a spin almost perfectly centered, with speed and accuracy. Yet, I had one spin that I must master to pass my next skating test. It is what most would consider the hallmark spin of figure skating: the layback spin. It involves a skater pushing his/her hips forward while bending his/her back and shoulders completely back and flat while he/she spins with one leg bent behind them and arms encircled above their torso. It is a beautiful spin. I still recall my coach taking me to the side of the rink and instructing me to hold on to the rail and practice the posture. Even with the stability of holding on to the rail, I could not execute the posture. My back muscles seized and cramped. It was unusual for me to struggle with a spin. I didn’t think too much of it so I opted for another alternate spin that could be performed in its place. Skaters rarely opted to do it because it was a more difficult spin that required that a skater spin in a seated position with the right leg out in front, then switch legs in the middle of the spin. Next, I had to spin on the right leg and put out the left leg then switch back to the original position again. All this is done while the skater stays centered in one spot on the ice without doing what is referred to as “traveling”. Traveling always results in a deduction of points. I watched as he attempted to demonstrate it. He then waved at me to give it a go and watched in anticipation as I nearly nailed it on my first attempt. I saw the astonishment on his face when I skated back over to him. My determination paid off and I passed the test. Soon after the incident, a coaching position opened at the rink. My coaches, Kim and Gray asked if I was interested in the position. At that point, I had worked hard to pass several skating tests, yet I still thought others were more qualified than I to coach. When I inquired about this, Gray’s response was direct.
“She (directing his eyes to the student that I referred to) is an excellent skater, however, everything comes naturally to her. Unlike you, she won’t have the ability to teach because she cannot meet students where they are.” This comment would be instrumental in my future as a classroom teacher.
More recent puzzle pieces began to come to light with what they call the non-motor symptoms of dystonia. The non-motor symptoms can be equally, if not more, frustrating. Until now, I did not recognize these for what they were, part of a brain disorder. I had kept a lot of these non-motor symptoms to myself because I did not understand them, and I often thought I was imagining them or that I was just tired. Many of the non-motor symptoms also come from the impairment of the basal ganglia. In addition to controlling motor function, this part of the brain controls executive functioning. The checklist for deficits in executive function includes the following: difficulty multitasking: check, difficulty shifting from one activity to another: double check, difficulty with focus, again check.
So, I have Dystonia, now what? Is there a way that I can use this experience to make me a better person, and a better advocate for others? As I recently discovered, yes! Two years ago, I began working to obtain my national board certification (NBCT). Due to the non-motor symptoms mentioned previously, I found this extra challenging. I had moments when I even considered giving up teaching altogether. While in the process, I ran across an article on the NBCT website that included the terminology “neurodivergent teachers”. Intrigued by the title, I began investigating what it meant to be a neurodivergent teacher. I read stories about teachers who suffer from neurological disorders and how they utilized their condition to educate students who also suffer from brain disorders. The article went on to discuss how these teachers demonstrate the innate ability to identify their students’ needs and find unique and innovative ways of teaching both typical and atypical developing students. My skating coaches’ words echoed in my mind.
Having a neurological disorder myself, I would have an even greater ability to help students with similar disorders. Yes, my dystonia could indeed make me a better person by making me a better educator.
Unlike my childhood occupational therapist, who did not have the patience and ability to work with me on my writing, I will be better equipped to meet my students where they are.
Once again, my determination prevailed, and I not only continued teaching, I also successfully obtained my NBCT. I do not know what my future holds or how this disorder will impact me moving forward. As I mentioned, the rehabilitation process for dystonia can be long and arduous. Fortunately, I have a track record for being determined and pushing beyond challenges. I hope my journey can be an example to others, particularly my students. I am still in the process of discovering more about my dystonia and that’s ok. As I gain more pieces to my puzzle, I know that putting them together will, in time, form a beautiful picture.
Source: Ginny Warriner, NBCT
Ginny is 51 years old, a teacher, wife and mother of 2.