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My Story: Accepting NF and Living My Life

By January 12, 2018February 5th, 2024Awareness, NF1, Story of NF

By Bailey Archer

It started when I was 12 years old. At least, that’s how it felt. Even though I have had this my entire life. Around the time school was out for the summer, I visited a doctor and found out I had this. Now, you’re probably asking yourself: “What is ‘this’”?

Well, let me tell you. This ‘thing’ I have is a disorder called neurofibromatosis. Long word right? We also call it NF, so it’s easier on those who can’t pronounce it or spell it. It took me a long time.

NF is a disorder which affects chromosome 17. It causes tumors to grow on nerves throughout the body. Growing up I knew a lot about NF and its effects because I knew my uncle and grandmother had it as well.

Sometimes it can be very difficult to live with. After finding out I had NF, I started visiting more and more doctors. It became a part of life. And when I started experiencing frequent headaches, I got my first MRI. It was scary going into that giant machine. I remember flinching each time it would make a new, unexpected noise. Which only prolonged the time I was in there.

I have since become used to those. When I was 14, they found a new tumor, this time on my corpus callosum (the center of your brain). And I got the news – inoperable. There was a moment of silence as a lump formed in my throat and I looked at my mom who had tears in her eyes.  From that moment, I decided I would be strong for her.

They told me I would need to start chemotherapy, to hopefully shrink the m&m-sized tumor. I went in for surgery to have my port placed, which is where they would deliver the chemotherapy to my body. I awoke to a new scar in my chest and a new hope of future relief.

When the chemotherapy started, I felt sick all the time. But I remembered the promise I made to myself to be strong and smiled through my tears of pain. My hair never completely fell out, but I did lose some. For a girl of my age, it was still pretty scary.

After two years, they took me off of chemotherapy because it wasn’t working. My brain tumor stayed the same size through it all. When my mom and I were told the news, the feeling of defeat hung in the air. It was as if I went through all of that pain and sickness for nothing.

Time went by, and, as I was slowly beginning to accept that this was something I couldn’t change, I moved on. I decided I would be living my life as if I didn’t have NF. I decided to forget about my tumor and the chemotherapy.

And once my attitude changed, I saw the people around me change. My mom was no longer worried and sad. She was so happy. She decided to be inspirational to other people with and without NF. She wrote a book about her life, which included the good, bad, and ugly parts that NF played in it.

Between the doctor visits, and other NF related pain, I am still living life the way I decided to back then. I am proud to be here on this Earth. And I wouldn’t change a thing about myself. Even the NF part. Because, if I didn’t have NF. Then I wouldn’t have this great outlook on life.

Bailey Archer is 21 years old and lives in Broomfield, Colorado. Bailey hopes to become a special needs teacher one day.

A version of this article ran on The Mighty, a site where people share their personal experiences with disability and disease.