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Dominican Republic Vacation

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I Am Not My Hair ~India Arie

Alopecia ( /ˌæləˈpʃə/, from Classical Greek ἀλώπηξ, alōpēx) means loss of hair from the head or body.” ~Wikipedia

While the definition is short and sweet, the meaning is far more profound and complex.

In 1976 I succumbed to Alopecia Areata. I was 15 years old. Can you imagine how devastating that was for me? How cruel my classmates were to me? How much more stressful that was in the midst of adolescence? On top of a turbulent home life and and the trials of middle school it was a walking hell. Not to mention high school was on deck.

The Beginning

Alopecia, in my case, began with bunches of hair in the comb. It’s was a scary thing. It is conceivable that hair can be in your comb in abundance for reasons of stress; a bad hair day; a bad braid job; chemotherapy or a chemical imbalance; however, in my case, non of that existed. The  comb was full of hair day after day turned into bald patch after patch whirling out of control. It was time to see the dermatologist and ring up a great psychologist. It was an autoimmune deficiency the doctor said for which there was not a cure and none has been found to date. All of those lotions and potions; miracle pills; and dietary concoctions didn’t work.  I cried and cried and cried some more. The crying seemed to never stop. It went on for years. Now I just cry a little bit every now and then.

At 15, Alopecia was the beginning of the most traumatic event that I had ever experienced in my young life. It was the moment that would define who I am today. It was the beginning of the struggles I would face with hair loss as an adolescent; a teenager; a young adult; and finally a 50 something woman.

Alopecia for me is my KRYPTONITE; my ACHILLES HEEL; and my WEAKEST LINK.

Doctors

As a parent, how do you handle something like Alopecia? First you go through beating your self up for all the perms you allowed on the hair. Then it’s time to pay a visit to the salon. After all, our long time beautician would surely have the answer. When that doesn’t work, and considering the internet didn’t exist, you try scalp treatments, hot oil treatments, special shampoos and conditioners. Finally, it’s time to visit the dermatologist who tells you, “Only if you had come in sooner”.

After a few years of cortisone shots in the scalp and ultra violet light treatments, I decided to call it quits. Yes, I gave up. It was over. Hope in a bottle was depleted.

Blame
Years ago, I use to blame my mother for my loss. Ohhhh she didn’t act fast enough; do enough; or care enough. After years of learning more about Alopecia and living it, I realized that no one was to blame. It was destined to be my reality. I also learned and came to accept that those treatments were just a means to prolonging the inevitable. As with anything in life, you hold out for hope to come in the morning but it just never does; instead, it’s another day in a not so ordinary life and you move on.

Defining Moments
Speaking from personal experiences, a child suffering hair loss is not an easy task. Not only are you going through the challenges of adolescence, you have to deal with how to hide from the world that you are losing your hair. How do you keep the other kids from staring or whispering their comments about your disposition? What exactly do you do when that one kid decides to snatch your hat off showing off your less than perfect crowning glory? In my case, I just stood there showcasing my spotty mess and then I simply cried about it; managed to put one foot in front of the other; pick up my hat; walk past all of those kids; and go on home. From there it became a matter of picking myself up; dusting myself off; and facing the world day after day taking care to guard myself against the nature of kid cruelty and adult ignorance.

Adult Encounters – What Bothers Me Most

  • When your eyes wonder to my head while you are holding a conversation with me. This makes alopecia sufferers extremely uncomfortable. We know that while you are attempting to engage with us, you are trying to figure out what’s up with our hair or lack of at the same time. That sort of multitasking is not considerate. We want to appear as normal as possible to the world.
  • When you ask questions like, “is that your real hair?” or “is that a weave?”.
  • When you stare and whisper.
  • When you want to put your hands in my head to check things out.

What I Wish People Would Do

  •  Do compliment my hair if you truly like it and if you don’t, silence is golden. Treat me like anyone else who’s hair you admire if you like my “do”.
  • If you would like to question my hair because you have concerns about your own, please do confide in me but do so privately.
  • If you are just curious, that’s okay too but don’t yell across the locker room asking me about my hair that I don’t have and expect me to be nice. Trust me, I will make you crawl under a rock with very few words said and I promise you, you will suffer with guilt for a while and wish you had been more diplomatic.
  • Always speak to me privately if you suspect that I’m different. I’m happy to speak on the subject of alopecia. I am all about awareness but please be gentle and respectful.

How do you cope with misfortunes? How do you treat others who are different from you?

Next up: Alopecia and Relationships

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