A Glass of Wine, Without a Straw
Salvatore Caruso
Ladies and gentlemen,
Some of you might already know me, or have read my story on our website. I am Salvatore Caruso, a board member of the Italian Dystonia Association (A.R.D) and Dystonia Europe. I have Myoclonus Dystonia, and in 2022, I underwent Deep Brain Stimulation.
I would like to take this opportunity to share a few words – about life with dystonia, but also about identity. About the question of who we are when our body betrays us and about what happens when we stop fighting it. Dystonia, for me, is not just a diagnosis. It has been – and still is – my philosophy teacher.
Most people take their body for granted. It does what they want. It works. They don’t have to think about it. For Dystonia patients, it can be different.
When your body moves against your will – who is the one watching? When your hand turns, even though your brain says “stop” – where does the illness end, and where do I begin? This might sound like a philosophical question. For me, it was the most real question of my life.
As a child and a teenager, my body showed things I didn’t want to show. I was teased. I was excluded. And slowly, I started to believe what others seemed to see: a boy who was different. An outsider. Someone who didn’t belong. That was perhaps the deepest wound. Not the movements themselves, but the moment I stopped believing that there was a person inside me worth fighting for.
But. There is a moment that many people with dystonia know. It doesn’t appear in medical records. It is the moment when you decide: I am more than what people think of me.
For me, that moment came around the age of 18. It wasn’t dramatic. It was quiet. Like the first warm day after a long winter. I stopped seeing music, films and other art as an escape. I started seeing it as a language. A place where I could just exist. Where who I was on the inside was stronger than what my body was doing on the outside. I learned something important: resilience is not something you are born with. It is something you choose. Every single day. Again and again.
This is what connects us as a community. Not the pain. But this quiet, daily choice to keep going.
In 2022, I underwent Deep Brain Stimulation at the Carlo Besta Neurological Institute in Milan. Electrodes in the brain. Electrical signals changing how my nervous system works.
I have thought a lot about what this really means. Because it raises an important question for all of us – including those of you in the medical field: what does it mean to be yourself, when a device helps decide how you move?
My answer is simple, but to me, it means everything: I did not become less myself after this operation. I became myself for the very first time.
When the involuntary movements improved, I realised something. I had spent decades using almost all my energy just to deal with my own body. Now, for the first time, there was more silence. In that silence, I could finally hear myself. What I think. What I want. Who I am.
A glass of wine, without a straw. It seems like a small thing. For me, it was everything. We don’t realise how much it means to feel at home in our own body – until we finally do.
We live in a world that moves faster and faster. More information, more noise, more division, more consume. People feel out of control – and they respond by shouting louder.
I believe that those who live with dystonia know something important. Something the world needs right now. We have learned to live with things we cannot control. And we have learned that you don’t need to control everything to live well. You need to know what you can change – and find peace with what you cannot. This is not giving up. It is wisdom, it is inner peace. And it is something that our community – patients, families, and doctors together – can offer to the world. If we choose to share it.
I am not here today just as a patient. I am here because I believe we are doing a lot, but we can do more as a dystonia community. We have incredible people among us. Patients with deep emotional intelligence, shaped by years of difficult experience. Doctors and researchers pushing the limits of what medicine can do. And stories that have the power to move people.
We can be a strong, shared voice. Dystonia is rare enough to be ignored – and common enough to deserve real attention. Attention for people who get a late diagnosis. For children who are bullied. For anyone who has ever felt alone with this condition. I want to help change this. Not just because it is my story. But because I believe we have something important to say – something that goes far beyond our community.
Ladies and gentlemen,
The body that made my life so difficult also made me who I am. It taught me what it means to keep your dignity under pressure. What true friendship looks like when you grow up feeling different. And what real joy means – the kind you find in small, simple moments.
I have learned that only those who know what it means to not be able to be themselves – truly know who they are.
Salvatore Caruso
