MULTIPLE SCLEROSIS – Interview with Anja Sašek
“Before the diagnosis, I didn’t know much about this disease. I was not aware that it could lead to disability or that the disease is autoimmune," adds Anja. That something was seriously wrong with her health...

Multiple sclerosis gave me new momentum. Momentum to live!

Anja Sašek is a direct, beautiful woman with a wonderful smile. Her sentences are deliberate, so she leaves an impression of reliability and determination in an instant. That she is in fact the way she presents herself is proved by her favourite quote of Kant: “Act so that your personal maxim can prevail as a general law!” If she doesn’t know something, she will learn. Because of all these qualities, she was promoted from the position of fashion consultant, which she started working as a student, to head of a clothing store. Her profession is dynamic, leading thirteen employees, but she finds moments of calm and additional joy in writing and drawing. The diploma of the Faculty of Arts, majoring in comparative literature and literary theory, is currently only a diploma.

Anja does not like to be in the centre of attention, she says she lives the life of an ordinary girl. But she simply had to get used to the extra attention of family, friends and co-workers when she was diagnosed with multiple sclerosis two years ago, just before Christmas. This happened at a time when she was expecting a promotion at work.

“I was lucky that my superiors had a lot of confidence in my abilities and were able to see through my diagnosis. And amazingly, during this period, I got promoted at work, despite my illness. Today, I am the store manager, and after two years, there are no health changes. The disease and I are successfully cooperating for now,” says Anja.

Until you breathe you exist…

“Before the diagnosis, I didn’t know much about this disease. I was not aware that it could lead to disability or that the disease is autoimmune,” adds Anja. That something was seriously wrong with her health was revealed when she got double vision. At the very beginning, she resorted to drawing at such moments, which relaxed her. “When I first experienced a severe attack that I couldn’t ignore, I didn’t think much or was in shock. Well, at least I didn’t think so. I thought – as long as you breathe, you exist,” explains Anja.

“My loved ones had a hard time dealing with the diagnosis. Especially my parents. Why, who is to blame, whether it is a genetic disease or not. I wasn’t overly interested in that. Sometimes, I had the feeling that if I could listen to my body more, it wouldn’t happen at all,” says Anja honestly. She adds that at times she also had a sense of guilt, but she did not let her feel sorry for herself. “The disease is something of mine, I took it as such,” says Anja decisively, who was, however, more afraid of the future. “The fear was present because of the job. Before the diagnosis, I proved myself a lot at work, so I was afraid of discrimination. That my surroundings would see me as a disabled person. That I would never get promotion. That I would be deprived of all that I have endeavoured for. Because of the shadows in the brain. Because of the lesions. But already at the time of diagnosis, I swore that the disease would not define me. And so I fought. Even more!” adds Anja, who enjoys the trust and support of her superiors.

Diagnosis changed me

It’s not difficult for her to talk about her illness. As she says, people wonder where the power comes from to be so positive. She explains that life has not given her any other choice, but to be positive. “I know it sounds weird, but the diagnosis has given me a lot of positive things. It gave me a new momentum. The momentum to live. Something I had been significantly lacking before. I laid a new foundation for life. How I will fight the disease, how I will control it. I changed my diet, re-evaluated my free time. I was grateful that the diagnosis was as it was – incurable, but not deadly,” concludes Anja. She takes medications that are quite invasive to the body every 12 hours, but she is currently responding very well to them. “Side effects, relatively unobtrusive, occur every two to three weeks. They remind me that the body never really gets used to pills. However, I can say that the situation is fine, although it is sometimes exhausting.”

Tumour joins multiple sclerosis

Multiple sclerosis turned into remission with therapy and a changed lifestyle, but Anja was shocked by new bad news about two years after the diagnosis, and only a few months before her 30th birthday. Brain tumour. “My life was falling apart. What I managed to put together over the last two years no longer made sense. I couldn’t fight any more, it seemed to me that there was enough fighting for one life,” explains Anja.

“A head scan revealed a type of lesion that was not characteristic of multiple sclerosis. I was referred for an urgent examination by a neurosurgeon. One possible, but less likely, diagnosis was low-grade malignant glioma. I waited two weeks for the results, which I saw as a guillotine at the time. Horrible two weeks. The hardest part of my life. That wait was killing me. I buried myself in work. I cried. Fortunately, my worst fears did not come true. The tumour turned out to be benign. The position of the tumour is a little worrying as it can start to slow down the flow of cerebrospinal fluid over time. If this happens, surgery will be required. However, this is a slow-growing tumour that does not pose a danger at the moment, so it is only necessary to observe it,” explains Anja.

I am actively improving my quality of life

The latter diagnosis was a key test for Anja of her own strength. “I’m not worried about anything I can prepare for or influence. I am more afraid of the unknown, of what I do not know will happen. At the moment, I can say that I am trying to be rational, that I am trying to keep my fears under control. Work helps me a lot in processing the disease. To function very well, not to be different, ill. I don’t allow myself to feel sorry for myself. That’s why I don’t want others to feel sorry for me,” emphasizes Anja.

“I live with multiple sclerosis and a benign tumour, but I prefer to say that they both live with me. I may one day be disabled, I may need tumour surgery. But it’s not certain,” she adds. “I have people around me who have always seen only me and not the disease. Both at work and in private life. Indeed, I get scared sometimes, too. Because I know how unpredictable is multiple sclerosis. But there are very few days when I think of illness. Sometimes, the disease reminds me of itself, just enough to see it’s still breathing. But I’m still trying to live a quality life,” she concludes. In order to improve the quality of life, she moved from Ljubljana back to her home town Novo mesto. On long walks, she is accompanied by her mischievous dog.

The article was originally published in the 12th issue of the magazine (April 2020)

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