ARTHRITIS – It is not the pain that hurts – the fear is
The medications allowed me to finish my studies and get a job as a piano teacher. Despite the fact that the disease has already affected my joints over the years, I have taught and played...

Dominika Naveršnik, the director of the Music school in Vrhnika, who, according to many received awards, is one of the most successful in the country, knew from her childhood what profession she wanted to pursue. She wanted to become a piano teacher and she also planned her life in this direction. Everything would have been well and good if she hadn’t contracted the chronic autoimmune connective tissue disease that stopped her from pursuing her dream job. Nevertheless, she did not allow the diagnosis to limit her life. Here is her story. (introduction: Sanja Rubinić)

I encountered chronic pain almost 20 years ago. I was in my final year of the Academy of Music, studying piano. I started playing at the age of eight – first I attended music school for 7 years, I decided to go to music high school, where I studied for four years, then to the academy for five years. So all my life, music has been a big, almost the only focus in my life. Ever since I was a child, I wanted to become a piano teacher and, of course, perform in concerts.

I thought I was sleeping awkwardly

The problems arose in 2001 when I was in my fourth year of the Academy of Music. It started with a pain in my left wrist, which appeared mostly in the morning. At first, I thought the pain was due to the position of my hands during sleep, but a few months later my wrist also started to swell, which I immediately showed to my personal doctor. She referred me to a rheumatologist, where the waiting period was a few months. Being a piano student in the fourth year of the Academy of Music awaiting graduation, my problems seemed more than urgent to me. I managed to pass the exams for theoretical subjects in June, and the diploma had to be postponed. I was at the peak of my life force, intellectual effort, but at the same time I felt incredibly incapable of life. Furthermore, I was hoping the pain would end soon, that it was due to stress. However, the pain did not subside. In the fall, during the new academic year, the pain gradually spread to almost all the joints of my body; especially in the morning it was unbearable. It took a long time until I went to the doctor and before I got to a specialist – and if I remember that period, I hardly know how I managed that pain. It was difficult for me to open the door, it was not possible to drive the car with gears, and even eating bread for breakfast was quite a challenge due to the pain in my jaw. A specialist diagnosed me with rheumatoid arthritis, a chronic, incurable disease.

You never forget the moment the pain suddenly disappears

When I found out about the diagnosis, my entire musical future was called into question. But only for a short period. At least it seemed so. I was given medication that relieved the pain within a week of the diagnosis. I took a dose once a week, and I was able to get on with my life! Playing the piano became much easier, and I graduated in February and did an art course in May. The problems were forgotten, life was wonderful, I got a job as a piano teacher at the Vrhnika Music School, where I started my musical career at the age of seven. I didn’t take the situation too seriously, thinking the disease was caused by the stress and the expectations at a turning point in my life. Now that everything was taken care of, I recklessly believed that all my health problems were over. But joint problems resurfaced. This time they could not be ignored.

In the autumn of 2002, I continued to take the medicine, but this time the medicine caused leukopenia (a decrease in the value of white blood cells) and the inflammation of the joints gradually worsened from month to month. The joints were painful and swollen even in the evening, the pain did not subside even at night. I was waking up and trying to figure out in what position my shoulder would hurt the least. I read about rheumatic diseases and how patients have to come to terms with pain, but on the other hand, the fact that my mom or boyfriend had to take me to work (because it was too difficult to move the gear lever or power steering with painful joints), became simply unacceptable to me. The rheumatologist found an altered course of the disease, my new diagnosis was SLE (systemic lupus erythematosus) with polyarthritis. I was given a large dose of corticosteroids, which (this time in 24 hours!) completely soothed the inflamed joints and relieved the pain. You never forget the moment the pain suddenly disappears. Suddenly you can jump to the ceiling, everything is as light as a feather, as if you were a superhuman, but in reality you are just… healthy. Only then you can understand what it means – to be healthy. Gradually, the doses of the medicine had to be reduced, and at the same time I slowly had to come to terms with my illness. It will never go away forever, but I can do as much as I can to relieve my symptoms. Healthy lifestyle has become part of everyday life, but I must emphasize the need to acquire knowledge or information about all aspects of the disease. The more you know about the disease, the easier it is to control it.

If you do not accept your own limits, you do not want to accept help

I still can’t tell if the disease controls my life, or I control the disease. I can also experience aggravation if I avoid the causes that I anticipate could make it worse. The disease is unpredictable. I can only have control in terms of observation and reaction – so I can prevent further deterioration. We seem to control each other as much as possible. Even if I didn’t let the disease mark me, it changed me quite a bit. Over time, people change, and it’s hard to say that the change is the result solely of disease, I see the change more as a result of life.

My illness generally doesn’t show up very outwardly. My hands have already changed a bit due to deformations, but it is not very obvious. A lot of people tell me that I look great even when I feel pretty bad. For all these years, I did not allow my surroundings to treat me with privilege because of my diagnosis. I did not allow myself that at all, but now I see it was a shame. If you don’t accept certain restrictions, you don’t want to accept help at all. However, people mostly want to help. Of course, I’m not talking about exploitation and privileges that I am not entitled to. I am talking mainly about accepting differences, needs, limitations – accepting yourself is the path to peace, to good relationships.

I don’t need to play the piano any more

The medications allowed me to finish my studies and get a job as a piano teacher. Despite the fact that the disease has already affected my joints over the years, I have taught and played the piano all these years (accompanying students learning to sing). So I achieved my goal in life and I taught. Until this summer. This year, however, I decided it was my last year to play for a living. So I stopped playing the piano and said goodbye to that part of my career, which was very difficult for me.

I figured I didn’t need that any more. And that I don’t have to be afraid of not playing any more. I was afraid I would miss playing the piano, but so far I don’t. I’ve been playing the piano since I was 8, so I identified with it to the point that the fear of missing it was enormous. It seems to me that this decision was the result of a long process, especially in terms of a sense of security and confidence that I can do something else in life other than play. For the time being, I am mostly relieved, but only the future will show whether I will regret the decision or not.

With each farewell we gain something new

The desire to pursue music was enormous, yet life slowly led me to other fields. Eight years ago, after an unexpected turn of events, I actually became the director of the music school. I am pleased with this work, as we achieve very good results as a school, and I am therefore very satisfied.

In all these years, I keep realizing that some things in life don’t go the way we planned them. Life has its plans for us, and it is best to accept them. And when we do, then life is beautiful and easy. But I am positive due to the thought that with each farewell we gain something new, make place for new, beautiful experiences. And if I return to the pain; it is not pain that hurts so much. Fear and feelings of insecurity are the ones that connect with the pain and make it unbearable.

The article was originally published in the 11th issue of the magazine (December 2019).
Sanja Rubinić

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