In this journey of self-discovery, my feelings about myself have undergone several stages. You might think it’s just a passing phase and that I’m still the same person, but I beg to differ. I currently see myself as a unicorn, which symbolizes rarity, uniqueness, and being different.
I shared about my fears in a previous article.
Atos Medical Meeting
Recently, I had an incredible experience at an event organized by Atos in Indianapolis. Atos is the company that provides all the supplies I need daily due to my condition. Surprisingly, it was the first time in over two years that I met someone else with my disability.
You can imagine how rare it is to find other unicorns like me in the real world, especially as a relatively young woman (I’m 60.) Typically, laryngeal cancer affects older men, which was evident at the event where I was one of only three women, and the rest were men, including a 90-year-old gentleman. Call me a unicorn again!
Meeting People Like Me
Let me share my excitement about the event! Meeting people who truly understand my struggles was an incredibly amazing experience.
They knew exactly what it feels like to go through the challenges of swallowing, speaking, and breathing normally. These everyday activities can be a real ordeal for someone like me. And those little annoyances, like the TEP (prosthesis) leaking, or the baseplates not sticking to the skin, are things only someone in a similar situation can truly relate to.
It’s frustrating not being able to eat and talk simultaneously or not being able to call for help during outdoor activities. They also understood the social aspects, like having meals with others and not being able to engage in conversations properly.
Interestingly, I realized that I might be a bit vain when I saw that no one was trying to hide their necks with scarves like I do. I don’t want people making assumptions about my health just by looking at me.
Smoking Isn’t Always the Cause
And, by the way, not everyone in this situation was a smoker, as some commercials suggest. In fact, I met others who didn’t smoke either, and it appears that many younger people affected by this condition didn’t smoke either. A hoarse voice seems to be a common early symptom, so medical professionals should take note.
A delightful surprise was finding someone who lives just 2 miles away from me. What a coincidence!
Then There’s Lunch
During the event, I had a chuckle in my mind when I saw the provided lunch. It included lettuce, which I have difficulty swallowing, and the pasta was too gummy, making it problematic for me. Thankfully, there was soup, and I managed to grab a brownie. I had planned ahead and brought snacks for the drive back home.
Look! No Hands!
Now, the second-best thing about the event was the hands-free talking device I tried. It’s a small plastic gadget with a special HME (Heat-Moisture Exchange) that allows me to talk without using my hands. It felt like freedom! The amazing part is they gave it to me! The only challenge now is finding a way to keep the baseplates attached to my skin. My Atos representative sent me some new sturdier baseplates to experiment with. I wanted to use it at a family event this weekend but for some unknown reason my skin is having issues again. So I haven’t been able to practice. Damn radiation…
From Monster To Unicorn
I used to call myself a monster, a label that still haunts me sometimes. However, I’ve come a long way since then. As Taylor Swift’s lyrics put it, “Sometimes I feel like everyone is a sexy baby and I’m a monster on a hill. Too big to hang out, slowly lurching towards your favorite city. Pierced through the heart but never killed.” But now, seeing myself as a unicorn is a significant step forward, as it signifies being greater than a monster.