About the Author
Monica Chen is a native Taiwanese violinist and the first practitioner of dystonia in Asia. She has a DMA in violin performance and currently working as an assistant professor at Taipei National University of Arts. Monica studied with Dr. Farias, a leading specialist treating dystonia with movement therapy. She is also the Chinese translator of Dr. Farias‘ book, ‘Limitless’.
Before the Lunar New Year, I was honored to receive an invitation from a podcast of the professional classical music channel called, “Uncle Talks Classics” to talk about dystonia with the two hosts in the recording room. Towards the end of the interview, the host suddenly asked a question: “If the rehabilitation of dystonia is so difficult, how can you comfort the patient?” I was at a loss for words, so I simply replied: “If symptoms have affected life, it is worthwhile to find appropriate rehabilitation methods to improve the function anyway.”
However, this question haunted me for a long time. It’s easy to say that you should face it with a positive attitude. But I just can’t bring myself to say it since I know the physical and mental suffering of the rehabilitation process. I can’t take it lightly; Or, to simplify dystonia as a disease that can be cured by relaxation, which is not what I would like to say.
The patients who attend my sessions are usually full of enthusiasm within a month of their movement training. The small progress during the training leads them to believe that if they continue to practice for a while, they will be cured. However, such “expectations” are not necessarily what dystonia really looks like. It is true that a small number of patients can recover the function within a year or two, but most patients have to “Live with Dystonia“. I’ve seen patients who are continually self-training and adjusting their lives, only to gradually regain function after five or ten years.
If we have to “Live with Dystonia”, how should patients deal with dystonia during such a long journey? And stay motivated to keep training themselves?
I think it matters to face it, accept it and deal with it. Only by knowing and accepting what dystonia really looks like can you truly accept who you are now and face possible changes in your life. Dystonia is a movement disorder caused by the abnormal nervous system. It is not just a simple improper use of movements, but a complex disease involving the nervous system and brain function. I once advised a patient on my dystonia fan page to do breathing exercises and meditation because it is a great help for the nervous system. But she actually replied to me: “Never heard of it”. In fact, such an answer is not surprising. So far, when a patient with dystonia walks into the clinic, the doctor usually only provides the options of medicine (not specifically for dystonia) and botox. Movement rehabilitation is rarely prescribed to patients. It’s a movement disorder, but doctors don’t think the patient needs movement therapy; it’s a neurological disorder, but the patient doesn’t feel the need to improve the nervous system.
Most of my clients are musicians. When I work with them, I always see myself as I used to be, with no tolerance for mistakes and a sense of superiority that strives for perfection. I believe it’s the quality that makes them stand out as good musicians; but it’s also the quality that makes them miserable when dealing with dystonia. Whether it’s 50%, 70%, or even 90% progress is not enough, they just want a 100% recovery. They’re focused on returning to their once glorious moments, instead of accepting who they are now, and with that in mind, accepting the current situation as a starting point is impossible. Inability to accept the status quo, false expectations, and over-perfection are some stumbling blocks in the rehabilitation process. Can we accept our imperfect selves? The starting point determines how we face this journey.
I don’t like to call the process of dystonia rehabilitation a long-term struggle. As if the patient did not fight it seriously, did not try his best to beat the disease (only those who restore function are the winners), so he succumbed to the disease. There is enough verbal violence that patients with dystonia face in their lives, and they don’t need additional insult to injury themselves. “Live with Dystonia” is not a matter of winning or losing. We do not need to overcome the disease, but accept it as a part of our lives.
To come full circle, I suddenly understood how to answer the first question! “Staying on the road of rehabilitation, even if it’s hard work, and we still carry something forward. That is for a better future“.
Living with Dystonia doesn’t mean to move on but to move forward.