Alopecia

Most days I forget I am bald. It’s been about 25 years since my diagnosis and I’ve been a cueball every since. Very few people stare or ask me about it anymore. It may be because I live in a small town and everyone knows me. Still, I always have the script in the back of my mind for those with questions or concerns. Scripts are very helpful.

At one point I considered Alopecia my arch-nemesis, pure evil, kryptonite – you get the picture. Once enemies, we are now old friends. We had our history and now we’re indifferent. Que sera sera.

A co-worker recently told me about an article in the Spring 2019 issue of the Columbia Magazine regarding geneticist Angela Christiano. Christiano is the first person to discover the gene for hair loss. It is almost a paradox that she is featured on the cover with an overwhelming amount of her own hair, but has Alopecia.

Rarely do I read about any new developments in Alopecia research or potential cures, simply because I am not interested. I would be delighted for those who have been waiting for a cure though, but slightly sad to think of a world devoid of bald people. You learn to appreciate the aesthetic of the skull and jaw line the longer you look at bald people. I digress.

The article was great because it didn’t dwell completely on the science of it all. Christiano/the author provide us with the personal side of Alopecia, which can be difficult coming from a scientific point of view (not that scientists are incapable of feeling) but I have met a doctor or two who lack compassion for the patient because all they see are statistics. Allow me to share with you some of her words and some of my thoughts!

 

Institutions wrote back to me saying, in essence, that hair loss was trivial, cosmetic insignificant in comparison to AIDS and cancer.

I look back now and remember how Alopecia ripped me apart mentally. It consumed my life. Those are years of my life I will never get back. Now that I accept it though, I can see how placing cancer and Alopecia together is slightly absurd. But don’t for one moment dismiss Alopecia as purely cosmetic. It can change your life.

Girls who lose their hair as young children and grow up that way are tougher – their identity has been formed without hair. But girls who reach their teens with hair then lose it – well you can imagine.

If you have Alopecia, this statement is so epic. Sure it strikes at any age, any gender and it is hard for anyone, but my how young women can be so fragile. I cannot imagine how much harder it is now in this era of smartphones, social media and the pressure of an perfect online presence.

My co-worker who gave me this magazine asked me once if I would seek a cure if one were available. I quickly said no. It took long, hard years of banging on piano keys, drawing portraits and photographing myself to realize this is it. I can’t go back now. If I had hair I don’t know who I would be. I would be the girl who invested all that time to accept who I am only to go back. Seems a bit contradictory. Besides, if you know me, you know I am far too frugal to pay for shampoo and haircuts!

Click HERE to read the article. Thank you to the author for sharing!