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Living with NF2: Young love, hearing loss, and family

By February 18, 2021February 2nd, 2024Awareness, NF Summit, NF2-SWN, Story of NF

High school sweethearts Cole and Helen met shortly before Cole was diagnosed with neurofibromatosis type 2. In honor of Valentine’s Day, we asked Cole and Helen to tell us about their relationship, their first NF Forum, and coping with hearing loss.

CTF: In a romantic comedy, a meet-cute is often an amusing or charming first encounter between two characters that leads to the development of a romantic relationship between them. What is your meet-cute?

Cole: We went to high school together and knew of each other, but didn’t really hang out. We started getting to know each other a little bit better our junior year and then started dating senior year and haven’t looked back since then. While we didn’t have a meet-cute, per se, I am definitely proud to say we are high school sweethearts!

Helen: We are high school sweethearts! We became good friends our junior year of high school, started dating our senior year, spent almost every day of the summer together on boat rides and movie dates before we headed to separate colleges. We ended up transferring schools because we couldn’t stand being so far apart. The rest is history!

What is your favorite memory of each other?

Cole: My favorite memory of Helen was when we went on a high school trip around Europe with classmates. It’s not necessarily a specific memory, but the whole trip in general. I still had my hearing at the time and it was during our early stages of dating. It was amazing to see all the popular cities and countries in Europe during that time of our relationship.

Helen: My favorite memory with Cole would be the day he asked me to be his girlfriend when we were in high school at an ice cream shop. He was so nervous, he didn’t even order ice cream!

How did you discover you had NF2?

Cole: I started to notice that I was losing my hearing when I was 15. After a hearing test showed significant hearing loss in one ear, and a subsequent MRI, they saw the brain tumors and I was diagnosed with neurofibromatosis type 2.



(Helen and Cole at their first NF Forum in 2015) 

When did you tell Helen about having NF2?

Cole: I was diagnosed with NF2 in the 9th grade. Like I mentioned earlier, Helen and I went to high school together but didn’t really know each other that well until the 11th grade. But we went to a small school, so she obviously knew about my NF because I was the kid in high school who had brain tumors, brain surgery, and was losing my hearing. Once Helen and I started getting closer, I did tell her in more detail about what it meant to have NF2 and what this may mean for my life. I don’t remember her having much of a reaction at the time. But I was also an active high schooler who played sports, still had decent hearing, and no signs of having a disease. So there is a big difference in reacting to something that you hear may happen versus has happened or is currently happening. She was and has always been amazing through my NF journey. She has constantly been supporting me and pushing me since day one.

What was it like when Cole told you he had NF2?

Helen: I always knew he had NF2 because he was diagnosed when we were in high school together. I learned more about it as we were dating. We went to our first NF Forum together during our freshman year of college and we both learned so much information about NF. It was a scary, emotional experience but the absolute best decision to go!

What is your biggest worry?

Cole: My biggest worry is that I will forget what things sound like. Honestly, I probably already have. I became completely Deaf when I was 20 years old. Losing your hearing later in life puts you in that position where you remember what it was like to have hearing. For me, I think I remember certain sounds but I have forgotten a lot. One big one is Helen’s voice. I was fortunate enough to know her before I lost my hearing. Even though I still imagine a voice when she speaks, I am not sure if I am remembering her voice correctly anymore. So my biggest worry is that I will forget more and more of what things sound like.

Helen: I try not to worry about anything NF related. Cole has taught me that there is no reason to worry. I see that he isn’t worried at all, so I do my best not to! Worrying does not cure NF. I pray every day that there will be a cure!

What advice would you give to others about NF and dating?

Cole: With NF2, I know one of the biggest obstacles with dating is probably hearing loss. Losing your hearing can make you lose your connection to other people. It is tough, but there are so many advancements in the world to help. I am not talking about advancements to restore hearing, which I hope will come one day soon. More along the lines of transcription apps and apps to help Deaf and Hard of Hearing people communicate. Things like that will help bridge the gap in communication and really help you get connected to other people. Even if communication is tough, you just need to continue finding ways to interact with people around you instead of balling up in a comfortable shell away from others.

Helen: I would say don’t let NF define you or your relationship. Sure, there will be obstacles along the way related to NF but you shouldn’t ask yourself the “what-ifs.” If it’s meant to be, it will work out!


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