January 3, 2019

Do not be afraid of society – educate!

I have had dystonia for many years, I have been avoiding people and public events more and more during these years. Paradoxically, when my symptoms got worse, I started approaching people.

Antibodies to The Botulinum Toxin

Over a year ago, my body developed antibodies to the botulinum toxin. I have a cervical dystonia and my head has turned permanently to the left. For 8 years the toxin worked on my muscle spasms and my symptoms were not as visible as they are now. People around did not really see anything wrong with me. But I was ashamed that I could not control my neck and that I looked different to my friends. I slowly stopped meeting people, going to concerts, tours and public events. Shopping in the supermarket caused me panic attacks. When my condition got worse and I stopped working, I understood that I was lonely and if I did not do something myself, nobody would help me. I could not let dystonia take away everything I like to do! 

An Online Support Group

At that moment, I created my online support group and decided to do something crazy that would change me and break my fears. I asked my photographer friend to go to Galway – a city in Ireland where I live, to document my campaign. I stopped people on the streets of Galway and told them that I was suffering from dystonia. I explained what dystonia is and what problems I face in my life. After each conversation, we took a picture with these people and with the logo of my support group. Nobody said no! Nobody said that there is no time to talk! Nobody ran away from me! This campaign showed me that the biggest barriers are the ones we put into our own heads. Since that time, I’ve been approaching and speaking to people more and more often. It is not easy. Especially at a time when the image of beautiful people is being cultivated on television, magazines and on the internet. Remember, we only live once! Nobody will give us back the years that we now have. Let’s live as best we can! Get out of the house and do not care what people in the street think of you, it’s your own life! 

Don’t Hide With Your Symptoms

It is important not to hide with our symptoms. We need to educate people about what’s happening to us. Do not be afraid to go to the hairdresser, tell him what dystonia is and you will never be afraid to go again. Do not be afraid of meetings, people show interest if you start telling them about the superpower you have – called dystonia. When people see your heart, they will stop seeing your neck.

Adam Kalinowski
Board Member Dystonia Europe &
Polish Dystonia Association