The only thing we have to fear is fear itself. This is what a wise man once said to a crowd of penniless, starving people who had lost all hope. This man was Franklin Delano Roosevelt. Having Polio as a child, he had experienced struggle firsthand, but there he was giving his inauguration speech, being sworn in as 32nd president of the United States of America. Having survived Polio at a young age, and still suffering from the consequences of the grave illness, Roosevelt was no stranger to fear. Perhaps, this is what made him the right person for the job. The job of overcoming the fear of turning the country upside down and bringing change to a system that was considered by most to be unchangeable.
As FDR had Polio, I have many illnesses as well; instead of a president though, I am a writer. I have been ill since childhood and I have found that in order to get better sometimes we have to do things that are difficult, challenging, and frankly, do things that we just don’t want to do. I have woken up on a ventilator unable to breathe for myself, and that was scary… The tube in my throat hurt and I was scared of it… I wanted to rip it out. But I held still, and I overcame my fear. I waved to the nurse to give me more sedation, and I was okay. At that point I feared that a machine was breathing for me, but the only thing I had to fear in that situation was: my fear of the tube, my fear of the pain in my throat, and my fear of falling back asleep. The only thing I had to fear was fear itself.
I started having surgeries at the age of 7. I remember for my first surgery they told me to count backwards from 10 as they put me to sleep. The last thing I remember was them telling me I would have a silly dream. The next time I saw the Operating Room doors was two years later in Boston… All of it was scary… But if I had listened to my fear, things would have been much worse for me. By holding together my fear (even at such a young age) I was able to keep going.
The biggest fear I had though, had nothing to do with keeping going… The biggest fear I had, the one I couldn’t overcome, was sharing the reality of my illness with others.
Because I became sick at a very young age, there weren’t a whole lot of people for me to connect with; I guess that didn’t matter because I was scared of talking about being sick anyways. I didn’t want to be seen as weird or different; that’s all I could see myself as… Weird and different were the adjectives that screamed back at me when I looked at myself in the mirror as a child and I shivered in horror at them. I wanted to be like the other kids, but I was constantly reminded that I was not. I was afraid of being found out; I wanted to be normal. I wanted the other kids to think that I was like themand that there was nothing wrong with me I was afraid of them knowing and in the end, they just treated me worse because of it (because as we all know kids can be mean).
Because I wanted nothing to do with anything about my illness, I was alone. I had no one because my fear had caused me to push everyone who ever tried to help me away. I went through different visions in my head of what I could be (or rather what I wanted to be). The most tragic thing though in my opinion is that I had no one to validate my feelings. I wished more than anything that I had someone to validate my feelings, but I was afraid to reach out and share my feelings.
Finally, the time came… A family friend saved my life and invited me to write my first blog. My mom made me do it; of course, I was too scared to agree to do it without a huge guilt trip. But the time had come… I was 13 and it was time for me to share my story even if I didn’t want to. So, I sat down and wrote. I wrote about how my illness made me feel. Just like I did in my diary every night, but now it was for Julie (because I love Julie and I would do anything for her) and it was for people I didn’t even know. There I was naked in front of the crowd, but who cared because if the words didn’t go on Julie’s website, they would just go in my pink diary with the pirate sticker on it.
I didn’t think the post would go anywhere because I didn’t think that Julie would even like the writing enough to post it on the website, however, that wasn’t the case… She posted it on her very popular website, and it got a lot of views. There I was… My biggest fear had come true. I was starting high school in a month and now everyone would know. There was no more hiding it… The fact that I was sick was undeniably out on the internet, just waiting to be discovered. It was my greatest nightmare; the thing I had feared most. And it ended up being the greatest thing that ever happened.
People actually reached out to me to tell me I had done a great job, and I cannot remember who, but someone said to me “that is exactly how I feel” And it was those 6 words that made me become a patient advocate. Because I had just validated someone’s feelings through my writing.
I was so scared for people to know that I wasn’t “normal” but really, the only thing that was holding me back in life was my fear of being seen as not normal. The only thing holding me back was trying to be normal and appear normal. The only thing holding me back was fear itself.
Now that I have overcome my fear, I can own the world. I can help people like I never could have before. I can help validate people’s feelings and I can reach them. I can be that voice that I never had. I have worked really hard to become a patient advocate and I want to put my entire heart, mind, and soul into it. This is my main goal at Nova Combian: patient advocacy. I want to provide patients with someone who will listen. I want them to know that their feelings are valid. That their concerns are real. Because in my eyes, and I hope in the eyes of others, you are validated.
I’m here for all patients no matter what.
Contact information for Lexi Uslu:
WhatsApp / iMessage: 508-596-9398
