An honest reply to Congresswoman Rep. Ayanna Pressley.

On January 16th, The Root posted a video that moved me both as a man of color and a person living with alopecia. Congresswoman Ayanna Pressley was poised, articulate, and stunning as she spoke about her journey to find peace after losing all of her hair to Alopecia. 

At the time, I was sitting on a bus traveling to Rhode Island for a vacation with friends, debating if starting Cheltenham Ave was the right step in my journey with alopecia. There is so much I had never discussed related to my experience with alopecia. I stumbled through difficult times of change trying to find myself with little guidance. Could I be the voice I once needed to hear? The words she spoke resonated with me:

“ I’m not here to just occupy space I’m here to create it.”

— Rep. Ayanna Pressley

My Experience As A Young Black Man With Alopecia Areata 

Congresswoman Ayanna's words became the spark of reassurance I needed. I am here to create the safe spaces I was looking for. So, I am choosing to share my personal experience with alopecia with others trying to make peace with their odyssey.

My hair does not define who I am via GIPHY

As we travel through life we grow and mature. We begin to understand who we are and how we want to interact with the world. What we say, how we act, and even how we look over time becomes our identity. Alopecia robs you of that identity, which is so tangled in your hair and appearance. Unfortunately, certain challenges strip you of the confidence built over the years. 

Since diagnosed at eight years old with Alopecia Areata, I have wrestled with my identity as a black male. Alopecia has robbed me of a piece of my experience as a black male.

Hair plays a vital role in black culture. Hair, for black people, has always stood as a symbol of self-expression and power. I wanted to be proud of my hair and proud of my culture.

I love how black culture can express itself through hair. I am fascinated with the precision and talent of professional barbers. The clean edges. The fades. The designs. I saw the movie Barbershop as a celebration of the black community and the support system that accompanies belonging to a tight-knit group. 

After watching the movie, I eagerly anticipated my opportunity to be a part of such a community. However, public spaces like barbershops terrified me because of the potential of watching, judgmental eyes. My history with bullying prevented me from joining such spaces (but that's a conversation for another day). I assumed I was required to have these experiences to be a member of the black community. Since I couldn't, I felt alienated from my own culture. I rarely took part in things I enjoyed because I feared whispers and snickers from others. Alopecia severed my connection with myself and the things I enjoyed. As a kid, I loved to swim. I savored the quiet of the above world when I was underwater. But as I resurfaced, I heard the giggles from others that were directed towards me and I was forced to stifle my desire to swim. 

As a child, I was talkative but I didn’t express my deeper emotions. I didn't feel comfortable sharing my anxieties with others. I didn't talk about my real experiences with anyone. I did not discuss my sense of loss. I did not discuss my desire to be accepted and supported or my desire to be free in my skin. It took time for me to learn how deeply my experience with alopecia had impacted me and continues to do so to this day. I would see black characters represented in the media from cool superheroes, like Static Shock, to black idols like Will smith and his shape ups (and growth as a black man). Or Kid 'n Play with their high-top fades dancing at their House Party. I would think they were so bold, clean-cut, and confident with their great hairstyles. But I never saw myself as bold or confident. Instead, I tried to surround myself with people so I could blend into the background. 

Those moves! That hair! From Kid n Play, Houseparty via GIPHY

The experience of losing your hair leaves you naked. Exposed. I've struggled to find my strength in this reality. What do I want to say to the world? How could I be both bold in my community and still protect myself? Where was my community? That's a work in progress. Hopefully, you'll join me on this road. Share your experiences. Grow with me and others like us.

You are more than your hair. Strive to be authentic regardless of appearance. Aim to feel like you. Don't let anyone or anything make you feel like a stranger in your own body. 

Someone has to guide others. Why not me? Why not you? Your value isn't determined by your insecurities. 

Alopecia makes you very secretive. For a long time, I fought against my need to connect with others. Since my diagnosis, I've spent a lot of time struggling with my identity, stifling my need to connect with others about my journey with alopecia. At twenty-six, I can count on my fingers the number of people I have spent a day with, without having some type of head covering. I need a sense of true comfort around me to have those moments but ultimately feel the most secure and the most like myself  when I’m wearing my beanie. It is the armor that allows me to comfortably charge head-first into life. 

Me with and without my armor (my beanie).

Hair is A Big Deal 

"Why don't you just go bald?" 

"Black men can pull off the bald look so well."

"It's easier for you since you're a guy."

These are comments from a person has never dealt with chronic hair loss. But tell them to shave their head in patches and suddenly they're against it. Hair is a big deal. I simply do not go bald because I feel more like myself with my hair regardless of whether I show it or not. It's my choice.

"Women diagnosed with breast cancer found that hair loss was a traumatic event, sometimes even more traumatic than the loss of a breast"  

For some individuals, coping with alopecia may be equated with grieving after bereavement.

Alopecia makes you very secretive. For a long time, I fought against my need to connect with others. Since my diagnosis, I've spent a lot of time struggling with my identity, stifling my need to connect with others about my journey with alopecia. At twenty-six, I can count on my fingers the number of people I have spent a day with, without having some type of head covering. I need a sense of true comfort around me to have those moments but ultimately feel the most secure and the most like myself when I’m wearing my beanie. It is the armor that allows me to comfortably charge head-first into life. 

Hair has been a big deal because it is so often tied to one's identity. But it doesn't control your narrative. Your authentic self-expression comes from your actions.

Self-Love and Identity with Alopecia

I'm an artist. A storyteller. The things I do, what I create, and how I present myself are all parts of my identity. This includes my hair and my beanie. I try to reduce the amount of stress and anxiety on myself as much as possible. Because when I'm most comfortable in my skin I am the most prepared to speak boldly and guide others. 

Now, I'm not saying to stay in your comfort zone. Explore! Experience new things! Grow! Put yourself in uncomfortable environments. Travel. Start a blog about it. But I'm more willing to do all of those things when I don't feel personally attacked by the world's eyes. 

If there was a permanent cure for my hair loss, I would one-hundred percent take that opportunity. But, until that's a reality, I choose to travel through this life as pleasantly as I can with alopecia and help others along the way. The key is to learn how to be genuine to yourself and live out the truest version of yourself. That version could rock a beautiful bald head, or wear headscarves and hats. How you choose to face the world is within your control. When you find the look and style that authentically represents you, you can learn to live your life with intent regardless of appearance. You can feel the most like yourself. 

Feeling comfortable in my skin.

Declaring my power in Alopecia 

I want to make sure others don't have to suffer through similar experiences alone. Instead, we take the initiative to create a dialogue about the anxieties that keep us from exposing our authentic selves. My journey from Cheltenham Ave to where I am today has allowed me to come to an understanding: I needed to learn how to be the representation I needed to see.

““Success means we go to sleep at night knowing that our talents and abilities were used in a way that served others.” ”

— Marianna Williamson 

Like Congresswoman Ayanna I'm making peace with having alopecia and I'm not there yet. Cheltenham Ave is here for Congresswoman Ayanna and for anyone learning to make peace and live an authentic enjoyable life with Alopecia. Success for me is using my journey from having alopecia for the past eighteen years to help others figure out how to feel most like themselves through their journey with alopecia. 

My older sister once said, “ When you are open to sharing, you build connections with those who really matter.”

Save the image below to your Pinterest and share a bit of honesty about alopecia.

Read More