December 13, 2023

Meet Salvatore from Italy

Salvatore Caruso



Our life journey is marked by ups and downs, challenges that test us, and moments that inspire us. In my case, a neurological condition known as Myoclonus-Dystonia Syndrome led me down a path of difficulty and self-doubt. This article tells my story and how, through resilience and willpower, I found the strength to keep going despite the odds.


Story and Resilience:

Due to Myoclonus-Dystonia, my childhood and adolescence were marked by bullying, social isolation, and deep personal crises. The symptoms, which made it difficult for me to perform everyday tasks, made me feel different and isolated. In my youth, when the darkness of despair enveloped me, I even harboured suicidal thoughts. My inner strength gradually unfolded despite these challenges, comparable to the awakening of spring after a long, hard winter. Music became my faithful companion, helping me get through difficult times. It served as a refuge and created a space where I could express myself when words failed. Although the changes came gradually, two crucial turning points in my life stood out. The first was a conscious decision to respond to life when I was about 17 or 18 years old. I began to change my perspective and firmly believe in my inner strength. The second turning point was the DBS surgery in 2022, which changed my life and exceeded my hopes.

My disease had affected almost every aspect of my life, especially my social relationships. I felt lonely and as an outsider, which was especially challenging for a communicative person like me. Bullying in my childhood and teenage years inflicted additional pain on me. The DBS surgery in Milan (“Istituto Neurologico Carlo Besta”) became a long-awaited turning point that changed my life. I hoped for improvement right after the surgery, but the actual results came gradually.

Looking back, the improvement in my quality of life is truly amazing, and most importantly, my condition is getting better day by day due to Deep Brain Stimulation. Thus, the surgery has helped me to appreciate even the smallest moments of happiness in life. I notice this especially whenever I drink a glass of water or a cup of coffee without much hesitation. For a large part of my life, I was only able to drink with the help of a straw.  The many new possibilities that opened up for me as a result of the surgery still seem like a miracle to me today. I have gained a completely new attitude towards life, and I am glad to have chosen Deep Brain Stimulation, even though the decision was not an easy one at the beginning.

Advice and Conclusion:

The journey through Myoclonus-Dystonia has been one of resilience and willpower. Overcoming bullying, social isolation, and personal crises required strength and belief in one’s potential. Today, after all the hurdles, I would like to pass on some advice to those struggling with similar situations:

– Believe in yourself and your inner strength, because it will carry you through the darkest days.

– Find your refuge – be it in music, art or other passions that give you comfort.

– Don’t be discouraged by setbacks, for they are part of life. Your resilience will always get you back up.

– Remember that life is precious and worth enjoying to the fullest.

Also, always be willing to help reduce the suffering around you – only then will your own suffering diminish over time.

From my experience, it not only helps oneself to cultivate inner resilience, but it also makes the world a better place, step by step. Living among algorithms and information overload is causing society to become more and more divided.

Rather, we should now find our commonalities and celebrate them. Inner strength, courage, self-knowledge and keeping a cool head help us to deal with the complexity of life and to meet each other at eye level again. Of this, I am now firmly convinced.

Salvatore Caruso

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