As most of you – especially my Star Trek fans — know, I have alopecia, an autoimmune disorder that causes the body to attack its own hair follicles, thus preventing hair growth. It doesn’t affect the body in any other way and is not contagious. This happened to me when I was about 11 years old, initially, with some patchy hair loss, and then at 14 all of my hair fell out. By the time I was 14 1/2 I was totally hairless… and have been pretty much that way ever since. As you can imagine, this is a pretty devastating thing to happen to a kid. The teasing, the bullying, the ignorant comments, the discrimination, the judgements… I didn’t see a way forward. I didn’t leave the house. If I did it was always with a cap on. My friends deserted me, all except one.It was a time when no one really knew what alopecia was. Doctors experimented on me by injecting me with all kinds of things and rubbing all manner of expensive stuff into my scalp. Once, I was treated as a lab rat while a doctor examined me and injected me in front of hundreds of medical students. Cutting a long story short, my alopecia forced me to make a choice. Give up. End it. Commit suicide. Or reinvent myself. Use this thing as some kind of reason to create a better me. A me I could love and that others could love. A me that discards all of the negative things that were in my life and focuses on the positive.
Well, the fact that I’m here means that I made the latter choice. A very powerful seed, deep inside me, wouldn’t allow me to give up… because there was too much to do. This was my life. I went to drama school. I started working out, etc… I took ownership and here I am. But, almost on a daily basis I look back and think about how lucky I was to have had that strength to make those choices. I did not have a support structure when I was young. The support structure most children had was one of the causes of most of my sadness as a child. So I had to struggle, scrape and claw to find the strength from within.
For the children (and adults) who have alopecia today, things, thankfully, are different. The social ignorance and superficial discrimination and judging still exist, but people know way more about alopecia. There are organizations and support groups to help people understand what alopecia is and to let them know that they aren’t alone and that it doesn’t have to be the end of their life just because they don’t have hair.Ever since I became a successful actor, and a name/celebrity of sorts, I’ve been meeting people who have alopecia, or who might be different in some way, and they’ll tell me that I inspire them and give them hope in the sense that that if I can succeed in Hollywood — an industry that judges and qualifies almost purely on looks — with alopecia, then they can survive the world and more so, live happy, successful lives.
In recent years, I’ve also been searching for groups and organizations that I can work with to help people by imparting what I’ve learned through my life dealing with this condition. Some of these groups I’ve shied away from, because they tend to focus on the negative aspects of alopecia. But others encourage understanding and embracing of this strange condition, teaching and acceptance instead of hiding and avoidance. Through my buddy Anthony Carrigan, another great actor with alopecia, I was introduced to the Children’s Alopecia Project, or CAP. Their mission is “To help any child in need who is living with hair loss due to all forms of Alopecia.” I have done a couple of events with CAP, in the capacity of mentor, and it is amazing.The first was a day at Disneyland, CA, and the second was a recent weekend during which a CAP Kids camp was organized in beautiful Cambria, CA. The kids got to do all kinds of fun activities, including kayaking, throwing tomahawks, touring Hearst Castle, making s’mores by a campfire, exploring tide pools, etc. What CAP do for these kids — and some adults, too — is something I would’ve killed for when I was a kid. The kids feel loved and special, and like they’re allowed to be regular kids, without concerning themselves with the stigma of their condition. They have the most remarkable time and get to meet and have total access to people like myself, Anthony Carrigan, Kevin Bull and other alopecian adults who have created happy, successful lives and wave the alopecia flag in all we do.
We show them that their lives don’t have to be about alopecia… but that they also don’t need to hide it or be ashamed of it, either. These kids are beautiful, amazing, strong and happy, and that’s due to their power, but also to their support structures, created by their supporters, their families, their friends, and CAP.
I want to send a massive thanks to the California CAP group organizers who make all of this wonder happen, Jeff Woytovich, Manon Hessels, Pete Asmus, Shannon Treese Asmus in California, and all of the other Children’s Alopecia Project groups and organizers from all over the USA who bring hope, happiness, and education to all of the many young alopecians around the USA. You guys are ALL great.Another big thanks goes to all of the kids. You are all incredible. You are all shining stars. Many of you are younger than I was when I lost my hair and are handling the situation better than I could have ever imagined when I was young. You have all taught me so much and I love every single one of you. You are all inspirations and guiding lights, and I’m blessed to have met you and hope to be your friends for a very long time.
Lastly, I want to thank Mercy Malick. You have been a shining light since I met you. You accept me, love me, and support me for who I am — the good, the bad, and the ugly — and I especially thank you for being allergic to body hair.
To my alopecian friends, please share this on all of your alopecia groups and pages so you can all know how amazing you all are!!
As a final note, I feel blessed to have alopecia. Without it I would not have been forced to make those difficult decisions and fight those battles that have brought me to the blessed life I currently have. Without alopecia, ironically, I probably would not be living my dream as a successful actor.
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