Emilia’s story

It all started eighteen years ago when I was 17. I’m 35 years old now. It was very hard at the beginning. I couldn’t sleep because of the uncontrolled movements, my neck and my shoulder were twisted. Going to school was not easy so I often missed classes. My friends were having fun and partied a lot like most teenagers and my life was all about dystonia. I went from hospital to hospital. I was totally helpless and did not understand what was happening to me. I received lots of different drugs by they didn’t help much. My mum arranged individual classes at home for me.

I think that I didn’t go mad at the time only because I always had a strong personality and I tried to confront my condition. I met with friends, went out and people visited me. I remember when my friend’s father once said that he couldn’t help wondering why such mishaps occurred to good people like me while so many bad people around were doing well and feeling fine. Even my teachers were surprised that I was so joyful.

Despite suffering a lot, I tried to live a normal life.

Then came a time when I started feeling better. I’m not sure whether it was the effect of acupuncture, well-chosen medications or maybe my inner cheerfulness. I passed my GCSEs and went to the prom which I enjoyed a lot. I took entrance exams to a college to study education but I failed. I wanted to try once again the following year but in the meantime my condition aggravated. I was hospitalised  and received botox – not much, just half a vial. All the time I was on neurotop tablets.

And my condition improved once again. I began to live a life similar to that of my friends. I went to parties and enjoyed life. I would go out even when I was twisted because when I danced my symptoms improved. I didn’t realise at the time that it was my best cure, the way to relax my muscles.

My parents suggested that I should start an extramural programme at the University of Technology. They were afraid that I would move to Toruń which would cost them more. So I began to study at the University of Technology and I was really scared at first because in high school I didn’t do well at sciences. But after the first semester I was really surprised to find that I was not bad at all.

All the time when I was studying to become an engineer I was fine and in the meantime I even took an extra course. So in the morning I did the course and in the evening I had classes at the university. When I graduated, I began a 6-month internship program. I also had a couple of relationships but none worked for a longer time. Men would break up with me when they learned I had a neurological disorder. So I came to a conclusion that I should rather treat men as friends and stop looking for a partner for the rest of my life. I spent the last year at the university focusing on intense study and defending my thesis. But I did not manage to do it as my condition got worse again.

At that very difficult time in my life I met my current husband.

At the beginning I thought we would only be friends. When he kissed me goodbye after one of our long walks, it crossed my mind that it might be something more. I was hospitalised again and the doctors gave me botox but there was no noticeable improvement. My mum arranged for me a special medical examination before a health insurance panel and they awarded a health benefit to me for a period of one year. After a year I wasn’t feeling well at all, but the health insurance doctors decided I was ready to start work. I could have appealed against their decision but I thought ‘Let them choke on the benefit!’ and I returned to what I did not finish in the past and defended my degree thesis.

I began to work but my condition was not too good, It was not easy to sit at a desk for 8 or sometimes even 12 hours when I was all twisted, but I managed. In the meantime I started learning Norwegian and doing  extramural master’s degree studies. I had a lot of duties but it made me feel better. After a while I had to give up on Norwegian classes because I would catch a cold too often, but I continued to work and study in parallel. I completed the second semester and then something took me by surprise.

Something that was growing in my belly.

I was just scheduled to receive another course of botox but I didn’t do it because I wasn’t sure what impact it would have on the baby. Even my doctor was uncertain. At the time, I took neither botox nor any medications and it was a real horror. Until the sixth month of my pregnancy I worked and studied but I did not manage to defend my master’s thesis. Pregnancy was an extra burden for my body. I was planning a natural childbirth but it ended up with a C-section because my beloved baby had breathing difficulties. When my baby was born I also did not take botox because I wasn’t sure whether it would not get into the breast milk. And I don’t know what happened then, whether my love for my child cured me or something else but since then my condition has begun to improve. I do not take any medications or botox at the moment, only some thyroid drugs.

There are days when my muscles contract and when I have a back pain but I’m fighting back. My sister told me once that she admired me because she would not be able to cope with all of it. But it might not be true. Before something ruins your life, you don’t need to find the strength to fight for a better tomorrow.

I also found a hobby,

pole dance – which makes me feel great and I started learning to swim. Both dancing and swimming help me relax my body.

I have all my life before me so I will certainly take up new hobbies in the future not to get bored. I try to stretch my body every morning, eat a healthy diet and cherish every moment of my life. I will never give up because I have somebody to live for. Even if my body hurts I try not to think about it because he is my whole life, I live for him. Optimism and openness in relations with other people helps a lot. The disease taught me  modesty. There are days when I am really mean for my husband, but I love him a lot too. It is sometimes difficult because he not always understands me and doesn’t feel what I feel. I don’t think I am a special person. Everyone is special and everyone should fight for their life because otherwise you can go out of your mind. First love yourself and then you can make other people happy :):):)

P.S. Lots of love, hugs and kisses. Cheer up! What’s on your mind matters a lot so think positively and live here and now. Leave your past behind and focus on the presence. And if the presence is not good, face it and fight back. Do not let other people judge you and your life because no one has a right to do it.


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