The Remarkable Beauty of Alopecia

We all have different masks we wear. We behave differently around our parents than we do with our friends and even more differently around our best friends. It is remarkably rare to find places where you feel completely at ease. Alopecia only limits the options. We're all searching for those special people with whom we can remove our entire mask (or in my case; my beanie).  

Recently, I had the pleasure to have an experience that could only compare to emerging from underwater, breaking the surface, lungs aching even though I didn't know I had been submerged. It was a breathtaking moment of true freedom. 

For four years, I worked at a non-profit that supports young adults with cancer. As a young person, there is so much change happening in your life. Receiving a cancer diagnosis only complicates an already confusing time when you are trying to learn and understand who you are and where you fit in the world.  

While addressing the needs of these patients, many expressed they were looking for a place that understood their unique circumstances. Although I have not had a personal experience with cancer, I loved working at an organization that provided space and support for them. 

I often wrestled with the question, where is the place that I feel comfortable and understood? What would it be like surrounded by people who related to my experience? After eighteen years of having alopecia, I finally decided to search for answers

The NAAF Conference: An Unforgettable Experience 

The decision to go was easy for me. It was time for me to embrace my community. But as a young adult in my twenties working at a nonprofit, financially it was a lofty goal for me to attend the conference. I had to purchase a conference ticket which was around $300. I had to fly across the country. I had to find a place convenient place to stay. The conference hotel was expensive not to mention sold out. Yet, all the pieces fell together.

From East Coast to West Coast visiting for the NAAF Conference

In June 2019, with a much thinner wallet but full of excitement and nervous anticipation, I flew across the country to Seattle, Washington for the 34th annual National Alopecia Areata Foundation Conference. I found a cheap round trip flight on Hopper, an inexpensive AirBnB, and used Lyft's savers plan to get around with a discounted rides. 

The conference lasted four astounding days. I spent the time surrounded by people who were genuine and inviting. Day one, I received a tag on my name badge labeling me a VIP (I always knew I was) for being a first-time attendee. 

I spent the next few days making friends with other Aloepcians my age, attending sessions like  "Revealing or Concealing: How To Tell Others", listening to guest speakers, and having honest conversations, not about alopecia. Of course, we did have those talks as well but it was just as meaningful not to discuss it. It was an unspoken bond we had already established. The freedom to spend our time not talking about alopecia was just as refreshing as being able to openly discuss our alopecia journeys.  

Each day was sunny and pleasant. On windy days there were jokes about wigs and hats blowing away. It was comforting knowing everyone understood both the seriousness and fear behind the joke but were also able to joke about it so openly. Young bald heads were running around happy to just be kids. I understood that freedom. It was the freedom of living without thinking about the looks and whispers of others. The lessons I learned in childhood from bullies, made me wary of other children. You couldn't fake the joy and laughter of this group. I often found myself tearing up with a lump in my throat.

Ultimately, I found myself having one of the most remarkable experiences of my life.  

New friends made at the NAAF Alopecia Conference

Perhaps it was the parents who just wanted reassurance that their child would be okay. Maybe it was the young adult panelists who spoke with strength and self-awareness about learning to accept their alopecia diagnosis but I knew the people there just wanted to learn from one another and enjoy each other's company. 

Growing with Alopecia

Creating a blog based on my experience was never in my plans. First, I had to understand myself and how to live with alopecia. I wanted to own my narrative. But self-awareness and confidence only come through experience. After my time at the conference, I decided to enjoy a couple more days on the west coast. 

The day after the conference the absence of the attendees in the hotel lobby weighed heavily on my heart. The movement of hundreds of conference-goers was replaced with silence. I could feel the vacancy left by beautiful bald heads and the diverse variety of head coverings connected to smiling faces. I missed it all instantly. I found myself thinking," where are my people?" 

There is complete comfort knowing the majority that surrounds you understands that you simply want to be happy. Regardless of the hand life dealt you. Thinking back on the ease I had felt the previous four days, that question ignited a spark that would become Cheltenham Ave.

After attending the conference, I was even more aware that so many of us just want to hear the words "I had a similar experience!" The alopecia community is filled with people who just “get it “ because they’ve lived it. 

I’m not sure what wise soul said "comparison is the thief of joy” but I constantly remind myself of those words. The conference was a celebration of the differences that makes us unique individuals. We just happen to be tied together by a common denominator: alopecia. Too many times I've stared in the mirror and thought negatively of myself compared to "hairy" people. Too many times I was ignorant thinking I was less than others because of my appearance. Too many times I lacked the courage to grow because I wasn't confident in my sense of self. 

For many of us, the conference was a celebration promoting the freedom to be authentic. For some that freedom was dancing wigless like no one was watching. For others, it was dancing with their best wig, or beanie, or hat. We were free from the pressure society puts on appearance. I was completely and honestly happy.

The most beautiful thing about my experience with alopecia is the community. 

I look back on my life and acknowledge that there are events that teach you what you need. The freedom and authenticity I felt at the conference is a state of mind. I can carry that confidence throughout life and live just as freely as I did on the dance floor. 

Amazing time on the dance floor with amazing new friends

- Gabe

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