“My story begins on the 14th of October 1997. I was just like any other baby until it was time for me to start walking. When a baby is supposed to start stepping on its feet, I didn’t. I never showed any signs or interest in walking; these signs, of course, meant something wasn’t right, and therefore, my parents took me to a doctor. It wasn’t just one, it was a couple – a family doctor, pediatrician, neurologist, etc. I had some tests done, and when I was around two years old, they came to a conclusion my diagnosis was Spinal Muscular Atrophy (SMA) type 2. SMA is a genetic neuromuscular disease, that basically makes your muscles weaker and weaker throughout the years.
It affects every muscle in the body, especially the limbs and lungs. Since I was so young, I don’t remember any of that. However, I know it was quite a shock for my parents. Regardless, they accepted that fact quickly and treated me like any other child, for which I couldn’t be more grateful. They made me feel equal, not any different from anyone else. That’s the reason, in my youth, I never felt like there was something wrong with me – because, at the end of the day, there really wasn’t. I felt included in everything; we always found a way to make it so, even with my power wheelchair.
Everything was perfectly fine, I just had trouble with a few cases of pneumonia – because SMA affects the lungs, it’s harder for me to overcome any lung-related sickness. My parents always stayed positive though. There was a time, when my condition got so bad in the hospital, the doctor told my mom there were three options for me: I never go home again, I go home with a trach, or I go home completely okay. The last one, as he said, was a miracle for him. My mom looked at him and said, ‘Only one option exists for her, and it’s the last one.’ Guess what? I went home perfectly fine.
Then came my teenage years, when I became more aware of myself and my body, my restrictions, my differences, and started to compare myself quite a lot to my peers. Every teenager has that time in their life when they don’t like something about their looks and things like that. I, for example, didn’t like how skinny I was, how crooked I was, or how my legs and arms looked. I didn’t like much about myself. However, I never said to myself, ‘I wish I could walk.’ Not being able to walk was what I’ve lived with for my whole life, and therefore, I couldn’t miss the feeling of being able to walk.
As I already mentioned, the hardest part about having a disability was my looks, not my disabilities themselves. I always wondered what other people may think of me. I never wanted pictures of me being taken. I never felt ‘pretty enough‘ to fit in. I really tried to feel good in my own skin, but at the end of the day, that’s easier said than done. Despite everyone telling me I look pretty, beautiful, etc., I never believed that. Because in my own eyes, I wasn’t. I wasn’t pretty, beautiful, or anything like that. I wasn’t good enough.
In the teenage years, SMA often comes with scoliosis, and so it did for me as well. My spine was so crooked already, that it affected my breathing because it was squeezing my lungs. And so, I got my spinal fusion in 2012. The surgery went great, everything was okay, until a few days after. I got a high fever. Moreover, the doctors soon found out I was infected with staphylococcus – a meat-eating bacteria that settled down on my heart valve. Again, there were three options for me: I never go home again, I get surgery, which was really dangerous for me because I just got through one, or the antibiotics slowly helped me.
My family and I believed I was going to be okay. I think it was a month later, I was still in the hospital at that time, when I had my heart valve checked – this memory stayed in my head until this day. The doctor was examining it and looking at the screen deep in his thoughts. He picks up the phone and calls his colleague to come look at something. At that moment my face, as my mom said, became a full rainbow; I believed there was something really wrong.
His colleague comes and looks at the screen. My doctor says, ‘Do you see what I see?’ and he replies, ‘Yes, there’s no trace of anything being wrong.’ No one could believe it, even my doctor, who started dancing over the whole room. He said he never saw something like this because it was supposed to be impossible. After, I had to stay in the hospital for another month because I had to finish my antibiotics. I went home just fine, again.
Suddenly, just like someone flipped the switch, everything started to change. In 2019, I posted an ad about me looking for a personal assistant; the law just came into action that year. Amongst many job applicants, a photographer reached out to me and asked me to do a photoshoot with him. I never imagined something like that was even a possibility for me. I never saw myself standing in front of a professional camera. Only people who fit the fashion industry standards can do that. Well, if only I knew how mistaken I was.
I believe that’s the reason my confidence was boosted. I got approval from someone that works in the beauty industry. It shouldn’t be this way though. The fashion/beauty industry shouldn’t determine who is worthy and who isn’t. Anyway, that’s when I became more confident, right there at my first professional photo shoot. It all felt pretty unreal to me. I was the model. I never even let my mind cross that possibility because I never saw a disabled person in an ad campaign in the modeling industry. Never really a real disabled person in a movie or series either. That’s when a whole new door opened for me.
That same year I started using my BiPAP (ventilator) 24/7. Until then I only used it during nighttime, however, my breathing became worse, and I needed some extra help. BiPAP is a machine that helps me breathe by pushing air in and out of my lungs (no added oxygen, just air from surroundings). Until then, I was always waking up tired, and after I started using it during the day, that completely changed. I had more energy, felt rested, and could last through the whole day without getting tired.
However, that too came with a minus. I was literally wearing it 24/7, which meant that other people, not just my family, would see me wearing it. Amongst other things I didn’t like about myself, there was a new one I added to the list. I thought this discomfort would last for a long period of time, but it didn’t. I quickly asked myself, ‘Why would I be ashamed of something that betters my quality of life?’ This question changed my whole perspective. There was really nothing I was supposed to be ashamed of. Not only was I more rested because of the vent, but I also gained weight because I wasn’t using all of my energy on breathing. There was more than just one plus because of it at the end of the day.
My view of myself, when I started gaining weight, changed entirely. At that time, I also decided to start my blog on Instagram. I wanted to write about my journey, my story, accomplishments, challenges, etc. I knew it would be a lot easier for me if I saw someone with the same disability as mine sharing their journey. At first, I wrote about my youth, how I accepted my disability, how my day looks. But soon after, I started to write about the real issues people with disabilities are facing every day – inclusivity, dating, intimacy, modeling industry, how companies still aren’t diverse, and more topics that are still taboo for many people.
Then came a huge point in my life. The first-ever treatment for adults with SMA became available in Slovenia. There was never any treatment like Spinraza beforehand. We were all really excited; it meant my condition could get a little bit better, or at least maintain at the stage it was at. We never thought something like that was even possible since my condition always worsened and never got better. I had to have some tests done to confirm my SMA diagnosis, only to find out we were wrong this whole time. I was misdiagnosed at an early age.
The treatment was no longer an option for me, which was quite a shock, to be honest. All of the hope vanished. It was a big disappointment at first, I have to say that, but it slowly got better. There was still a mixture of unknown and lost hope, however, I accepted that. I accepted I’m not able to get the treatment and I no longer know my disability’s name – to this day, I still don’t know it. My feelings about that are okay; the unfamiliarity of my diagnosis name didn’t change my condition, only the name for it did.
I know my body best, I know how it works, what it needs, etc., and that’s why I’m okay with it. It would be great to know, yes, but not knowing isn’t hurting me. I guess it was just meant to be this way. Now, I tend to listen more to my body as I did before. Beforehand, I always connected everything with SMA, how things with SMA diagnosis worked, but now I just follow my guts and do the thing my body tells me to do because our bodies know better than books. It’s been a few years now since I found out about my wrong diagnosis, and I’m not even trying to find out what I really have anymore.
It’s a funny story to me now, and every time someone asks me what my condition is called, I smile and say, ‘truthfully, I don’t know.’ Instead of telling the name of my diagnosis (like SMA, which not a lot of people knew, so I had to explain what it was), I explain that my muscles don’t work as they should, which I think is much easier to understand. I no longer connect it to something bad that happened to me, rather something interesting, since there’s so little chance for something like that to happen.
Right now, I’m doing really good. I got some really exciting opportunities I’ll be working on soon, I just graduated college from Criminal Justice and Security, and I think I’m doing the best I ever was. I’m happy with myself. I learned to love my body because it deserves to be loved. I no longer have that many insecurities as I did before. I love sharing my stories, and with that help others who may face the same obstacles and journeys as I do. I love to advocate for us, the disabled community, without any restraints because that’s the only way we can change someone’s point of view. I wish there were more people advocating/educating for us in my younger days.
If I knew the person I was going to become, I never would’ve put myself down as I did. There were so many good things, opportunities, and strange but funny stories waiting for me. I would tell the younger version of myself to love her life because, with every experience she overcame, I became stronger. And that’s what I would like to tell everyone else. Love your life no matter how hard it may seem, because there are amazing things waiting for you!”
This story was submitted to Love What Matters by Vita Bernik from Slovenia, Radovljica. Follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
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