Italian journalist Federico Bitti, whose dystonia has long prevented him from freely keeping his head straight, says being able to once again sit in this prayer pose feels triumphant.Chloë Ellingson/The Globe and Mail
I remember vividly the first blow in what has turned into an endless fight with my body.
I was working as a journalist for the La Repubblica website, in Italy in 2007, filming an interview with a colleague, and I suddenly found myself unable to look at him. As I turned slightly to the left, I felt a surge of pressure that kept forcing my head in the opposite direction. I had to use my hand to stop it. Fear and panic came over me.
The symptoms continued – the uncomfortable stiffness in my neck evolved into a permanently twisted and painful posture, with my head leaning to the left, pulling my shoulder up to my ear. A few months later, my neck muscles began to twitch uncontrollably – as though I were constantly saying no with my head. As a result, even the most basic tasks – shaving, drinking from a glass – became a challenge.
After what seemed like endless medical checks, the diagnosis was a condition called focal dystonia – a movement disorder that causes involuntary muscle contractions that are very intense; the muscles can no longer make the simplest of movements, instead engaging in non-stop tremors and spasms. I was 33 and locked in a constant struggle to make my body relax.
Most cases of dystonia are considered idiopathic – meaning the cause is totally unknown. Research has unearthed some genes associated with the condition as well as a link to injuries to the basal ganglia area of the brain, which controls the suppression of involuntary movements. There has also been documentation of tumours, strokes, repetitive injuries and cranial trauma being connected to dystonia, and sometimes the affected part of the body is connected to a key psychological event. But it's still a mystery. It's helpful to think of dystonia as a "symptom" that, like a fever, may have many different origins.
My condition started in the neck, but dystonia can involve other parts of the body (even the eyelids, which can close involuntarily for hours).
In other cases, the stress is concentrated in just one part of the body; for instance, musicians suffering from dystonia often suffer from tremors in the muscles needed to play their instruments. Singer Shania Twain once lost control of her vocal chords, and pianist Glenn Gould couldn't open his hand during the last years of his career.
At the beginning I thought (and hoped) the cause could be stress, fatigue or some strange manifestation of anxiety, and I kept telling myself, "You just need some rest, it will go away." But once my condition was diagnosed, I realized I was facing something very serious. Neurologists told me that my options were Botox injections to paralyze the muscles, drugs that relax them (benzondiazepines) or reduce their communication with the nervous system (anticholinergics) and, ultimately, surgery that would allow electro-stimulation of the areas in the brain that apparently take charge in conditions such as mine.
I tried everything but the surgery. A part of me feared that the wiring in my brain would be set on a path of no return, especially since the maximum improvement I could expect from the surgery was 70 per cent (with no guarantee), and there was a chance of complications. "You can only manage the symptoms, Mr. Bitti," I was told, "because there's no known physiological cause – there's nothing wrong in your brain – so, basically, there's no cure."
Nothing was working, and I was getting worse: driving, sitting on a chair and even taking a drink had become huge mountains to climb. Three months after the symptoms first appeared, I had to stop working. I would spend my days on my sofa, feeling sorry for myself and slipping into a deep depression. I had no way of knowing that the key to enjoying life again involved Madonna, a return to my carefree 20s, and a medical pioneer in Canada.
Using movement to heal
Only when I came upon his book, published five years after my first brush with dystonia, was I introduced to Joaquin Farias.
While reading Intertwined: How to Induce Neuroplasticity, I learned how the adjunct professor at the University of Toronto has been "retraining" dystonia patients with a new rehabilitation technique. It is based on the principle that, when it forgets how to perform even the simplest motions, the brain can be helped to remember them.
Dr. Farias has a doctorate in biomechanics, as well as master's degrees in neuropsychological rehabilitation, psychosociology and ergonomics. And his method was developed in collaboration with neurologists, psychologists and physiotherapists.
His "students" have ranged from rock stars, dancers and champion athletes to cooks, magicians and politicians, as well as various medical practitioners.
The cases were fascinating: a young woman who lost the ability to write (her brain wanted to write only the letter "s," as she was once forced to do as a child); a Japanese pianist whose abdominal muscles would contract only when she was sitting on a piano bench (as a child she'd had to bow to her teacher whenever she made a mistake).
I decided to fly to Toronto.
Still, when I met Dr. Farias, I had no great expectations. My dystonia had reached my back and made walking a true challenge. Because the contractions had spread to my abdominal and lower spinal muscles, it was impossible to keep my back straight: I constantly had to bend toward the right, which was exhausting. Travelling a few meters seemed like a marathon.
"How," I wondered, "can this man, whose method is not recognized in any hospital, succeed where neurologists, healers, physiotherapists have failed?"
But my skepticism subsided somewhat when another of his clients (a rehabilitation physician) told me that Dr. Farias himself had suffered from the condition, but no longer showed any symptoms.
We started in January, and for six weeks met at least 90 minutes a day, six days a week. The training focused on developing a new awareness of my body movements by building exercises tailored to my specific difficulties.
What I learned was overwhelming. It wasn't just that some of my muscles were working too much; some weren't working at all. My brain was refusing to let my body perform some movements, and I had to work to retrain it, to pay closer attention, to feel without thinking.
"The body," Dr. Farias told me, "knows better than you."
For example: While my shoulder was jerking upward, he would ask me to lower it, even if just for a second. That second would become two, three, then four, and so on. Usually spasms and contractions were so strong that it seemed impossible to go where my body didn't want to, and I gave up. But by really focusing on lowering my shoulder, I realized that I could do it. My brain had to relearn, and accept, that that is the shoulder's correct position. I burst into tears when we managed to relax my right abdominal muscle. And I'll never forget, 15 days into the training, my first untwisted walk in five long years. I had gained more control over my abdominal and spinal muscles and, even though they would contract randomly, I was finally able to correct myself: I could stop, straighten the back and start again. It was like a chain had been broken. My posture was, and still is, uneven and my neck still twisted, but a change had begun: I had found a path, and as long and exhausting as it could turn out to be, I knew I had to follow it.
Along with the training, and developing my body's awareness, came pain, nausea and a weird sense of discomfort. My body had been contorting for so long that right felt wrong.
Strike a pose
After one session, I was walking back to my hotel when Madonna's Vogue came on my iPod. It reminded me of a time when I used to let myself dance freely, to be silly, to move in a way less governed by the expectations of others. Lost in the memory, I soon realized that my walking had become easier, more natural and more fluid.
When I relayed the experience to Dr. Farias the following day, music was suddenly added to his technique and his office turned into a dance club. The results were immediate and impressive. While dancing I was able to move my neck and shoulders freely, to turn my head right and left and, above all, to stay still while "striking a pose."
You do not recover from a seven-year condition in mere weeks – it is a long journey. Body and brain must learn to work together again, and the mind will continue to play tricks so it can avoid facing whatever emotions are stored in the muscles.
I have a lot of work to do, but I know that this is the right path for me. Dr. Farias has devised a daily exercise routine that lasts about an hour and includes all the activities that reduce my symptoms (dancing, swimming, floating). And, as he told me it would, with my new awareness new movements are coming up naturally.
Finding hope
Western health care tends to look for protocols when similar symptoms are revealed. But much like trying to find an outfit suitable for all weather conditions, this policy is impossible for something like dystonia, which requires a very specific, tailored treatment.
Madonna works for me, but in his book Dr. Farias describes a violinist who got better by cooking, a pianist who could play again after climbing a mountain, and a surgeon who found that running stopped the tremors in his hands.
Dystonia is not life-threatening, but it made living a normal life extremely difficult for me. I felt deeply depressed and hopelessly isolated until I learned that there is hope. This is a condition you can live with and still be successful and fulfilled.
Federico Bitti is a journalist for La Repubblica.com.