No disease is visible after Ola Resztik. Oh, a pretty, petite, stubborn girl with eyes like hot coals. When we talk about the concert plans, he doesn’t even mention the multiple sclerosis demon lurking in the brain.
– You wondered for a long time whether to agree to the interview.
– I don’t want to be seen through the prism of my illness. The audience should judge my singing, not feel sorry for my illness.
– It is true, but in your life you had to fight for everything, even for your voice to be believed.
– I studied piano at the music school. I loved music, but the piano was not the happiest choice. I dreamed of shutting it down once and for all.
– So why did you go to music school at all? Parents wanted that?
– No, it was my choice, my decision. I was 7 when I went to music school. And I never wished I had time, like other children, to run around the yard. However, I did not love the piano. I liked to sing, I hummed all day long, I loved choir classes.
– You dropped out of music school for the time of high school.
— Roof, and suddenly I had a lot of time. It’s amazing, the more free time you have, the more you lose it, and the busier we are, the more we use each moment. I returned to music school when I turned 18 to study singing.
– The break in study was not too long?
– Actually, 18 is the right time to start learning to sing. The voice must mature, also the female voice, even though we do not undergo a mutation. But it was not easy, I heard a few times that I had a “little voice” that I should think about a different profession.
– Why didn’t you back out then?
– That’s what I do, when I hear “no”, I answer: “yes, yes, yes, it will work.” Of course, my parents and friends supported me, although maybe they didn’t always believe in my abilities. It was more about the right to make your dreams come true, the right to be yourself. My voice is still not the “great” one, but fortunately this is not the only criterion for finding your place in this profession.
– You graduated from the second degree music school with honors, you passed to the Academy of Music without any problems. When did you feel that you were winning, that you had successfully staked your way?
– With the start of studies. Already in the first year, I got the leading role of Adela in the student show “Zemsta batierza”. It was a big deal. I felt that what I was doing was getting better and better. Then another chance came. In the auditions for the role of Flaminia in Haydn’s “Il mondo della luna” I was second, which meant a place in the second cast.
– And then everything got complicated …
There was such a strange numbness in the left half of the body. I found a neurologist. An MRI was done, said to be suspected of multiple sclerosis. MRI showed demyelinating changes. I didn’t think about it for a long time. Suspicion is not a diagnosis. Besides, everything passed quickly without a trace.
– But that was the beginning.
– Yes, three months later, just before the Valentine’s Day concert, my right side started to go numb. Auditory hypersensitivity also appeared. The slightest rustle of a plastic bag was physically painful. The human voice was becoming unbearable. That was a nightmare. This time I was given steroids and told outright that I had multiple sclerosis.
– What did you feel?
– Horror. I didn’t know much about MS, except that you get sick for the rest of your life, there is no cure for it, there is a disability, yes, you don’t die of it, but nothing is the same as before. I was afraid for the future. Not if I can walk, but if I can still sing.
– You were hiding the diagnosis? How has the Academy responded?
– There are a dozen or so people per year, I had 13-14. Everyone knows everything about themselves. You can’t hide anything. The world of music is small. Of course, everyone was very nice, kind, caring, they wanted to help me, but from the second cast in “Il mondo” I fell to the third. I didn’t go to the show in Munich.
– And your diagnosis changed something in you?
– I was no longer the same person who did not have to take into account either the time or the body. My assessment of the world has also changed. People I wouldn’t even expect it from, tried very hard to help me. It was beautiful, it was wonderful. But, that’s how I wanted to sing, be like before.
– Did you sing in Il mondo?
– Only once. I had problems with my balance, paresis of the right side, and, according to the director’s concept, at one point I had to climb a ladder. In my condition, it was quite a balancing act. I gave up high heels, my mother bought me white ballet shoes. And we did it.
– Did you show yourself and others that you can?
– Yes, but sometimes you have to find another way, for example, instead of heels, put on ballet shoes
– When was the next throw?
– Just a month later. It was a temperature disturbance. As I stood barefoot on the bathroom floor, one foot felt hot and the other cold. At first I thought I had a cold, only later I realized it was MS.
– You were quickly included in the therapeutic program?
– Yes, I was lucky, I met all the criteria of the National Health Fund, as in the textbook. The second luck is that I responded well to the treatment. There is silence all the time, no throws.
– Third luck – you got a scholarship in Paris. How did it come about?
– Ecole Normale de Musique funded two scholarships for students of the Warsaw Academy of Music, including one for a singing student. At the university, it was decided almost immediately that I would go. I know French, I studied Romance studies for two years after graduating from high school, I graduated from high school with French as a lecturer. Paris, however, was not a particularly good time. There weren’t many classes. I was unnecessarily taking a leave of absence. I could easily finish singing in Warsaw at the same time. But, since I had a lot of time, I went to auditions. Thanks to this, I got a 10-month internship at the Cnipal opera studio in Marseille.
– The disease has died down?
– In Paris, I did tests for antibodies, it turned out, in black and white, that the interferons work. I also visited a neurologist in Marseille. It was a very strange conversation. As if we were from other planets. The French doctor did not want to believe that we give interferons only for two or three years. It was normal for her to administer these preparations as long as they were effective. And in my case they were. As a student, a person legally residing in France, I could benefit from health care there.
– Did you try to get another year in Marseille?
– Yes, but it didn’t work for reasons other than music. I had to go back to Warsaw. And that’s good, because I finished my studies, I started to arrange my private and professional life.
– Managed to?
– To a large extent, yes. I got an engagement at the Warsaw Chamber Opera. I invite you to the Mozart Festival, where I will sing in “The Magic Flute”, “Abduction from the Seraju” and “Bastien und Bastienne”. Privately, the return was also good for me, because it was then that my paths crossed with Grześ, my fiancée today. Grześ is not a musician, which helps me keep my distance from what I do. We want to get married in September this year.
– You are not afraid of the return of the disease?
– Of course I’m scared. Especially that in Poland the procedures accompanying the treatment with expensive interferons are very complicated and their effect is never certain. Although, personally, I am very lucky because I still qualify for the NFZ program. But I know that there are a lot of people who are worse off. Apparently, something is about to change in this regard. May. If I could have one wish, e.g. for a goldfish, I would ask for a cure for MS. Effective once and for all and available to all patients.
Interviewer: Iza Czarnecka
The materials of the quarterly magazine for people interested in multiple sclerosis, “Positive Impuls”, www.pozytywnyimpuls.pl were used in the preparation of the interview.
Is it possible to live with this disease? Transcript of the interview with Iza Czarnecka