thoughts and memories

Alopecia Thoughts and Memories:

I lost my hair when I was 15 1/2. So I never actually knew what it was like to be a kid with Alopecia. But Here are some thoughts of pressures and experiences from my teenage years as a Bald girl going onto becoming a bald woman.

I grew up in Mendocino, California- a small foggy “village” on the coast. When 15, it was time for me to become a woman- an independent woman. I was going to get my driver’s license which meant I could drive towards my successful future. For driver’s education classes the teens had to go over the hill to the metropolis of Ukiah (population 15,500). So not only did this mean- I was becoming a woman and independent, it also meant I was going to be introduced to new people, a broader range of people...

Cough...

Boys.

So as expected, while learning how to do left hand turns, I decided to use this to my advantage. I put my pretend blinker on, then based out of my body language I had learned to attract a mate, I swiped my hand through my hair. I had seen this done around me in television, other women, and magazine articles of “how to get your man”.
My hand went through my locks, and I felt- "yes I got it I got it- they want me they…"

My hand stopped to find a bare patch.

In confusion, I thought okay try again- so turned on my imaginary left blinker again, and ruffled my hair up, flipping, and doing a dance a bird would do to attract their mate. Same results, my finger tips stopped at the bald spot.

I kept my finger on that spot for a while, and at that moment- the boys fell far away from me, I couldn’t connect to what it meant to be a woman in the social cues I had learned. And I knew at that point my life was troubled and far from the reality I thought I knew.

------

That is a piece I might read at Glide sometime, but thought I would share with you my first noticing of bald patches.

-----

Days of the Hats:
It was the first two weeks in December that I noticed the bare spots. Right after the driver's license classes, I started waking up with my pillow covered in hair. Almost, like a pillow case made of hair. In the shower, I was easily able to pull handfuls of hair out. I wasn't so worried the first week, but I then had to tell my mom- "I noticed am losing a lot of hair- it's probably what I had in fifth grade- right?"

In fifth grade, I lost a quarter sized spot of hair, near the nape of my neck (the same spot where I lost the first patch at 15). My mom- everyday would treat it with vitamin e, and aloe vera- thinking that it was a skin sensitivity to shampoos. The hair grew back in about 3 months and I didn't think about it. My friends never knew about it because it was easily hidden.

So I assumed- okay mom- get the vitamin e out- let's do this again. But by christmas 50% of my hair was gone. By the 1st- I had less then 1/4 of my hair. And by January 26th, I had a few strands. Socially- I hid. I didn't want to go out, I wanted to isolate myself. I felt like I was sick and I was possibly dying, and the doctors just didn't know why, but I wasn't and my dermatologist didn't know at first that I had Alopecia. It wasn't until the second or third visit that he said- ohh new research says there is this disease called "Alopecia" I wore hats to school. People were wondering why I was always wearing hats. I was a student teacher in my old elementary school, teaching effective nonviolent communication to 3rd and 5th graders. The kids always called me hat girl- why do you always wear hats? I always just replied with it's winter and cold.

But by the 26th, my two best friends- enouraged me to shave the rest off. I didn't want to at first and had to take convincing, because I felt if I kept those strands, I didn't lose everything. Which was an equivalent for- if I kept the strands- I would not lose all of my self, of what I knew of my identity.

But alas, I shaved it off. I have a picture of me getting my head shaved- and as much as I hated that picture- brace faced, nervous, and obviously looking in pain. I use to think that was now who I was. Ugly, a nervous wreck, and full of pain. I now see that picture and I realize how far I have come with self, social identity, and the work I have done for empowerment. I use it as a tool for hope- and a reminder of all the work I still have to do in myself and my community. (I will try to send you a copy).

So after I shaved- remember falling asleep at my friends house- trying to rehearse- what am I going to tell my parents- how am I going to tell my parents? I awoke the next day, sleepy eyed, sat up from my friends bed, she had a mirror across the room. I remember seeing myself- and being spooked- thinking someone else was in the room. When I looked in that mirror I was conviced I was a monster- I was gone.

For the next year I wore hats. The first few days- there were a bunch of rumors going around- where is Heather's hair- why does she always wear those hats? Is Heather sick? The year of the hats drove me crazy because it was hot, itchy, and plain socially uncomfortable. It was the following summer I started wearing scarves.
-------

Bad tans

Once I started wearing scarves, it was known- I was bald. My scarves were like my attachment blankets. I couldn't go anywhere without my scarf. I had a special way to tie it on, in every color you could think of, but I prefered neautral tones. I felt that neutral tones- earthy colors- I could hide more easily- I wasn't bald girl with scarf, I could blend more easily then. I feel like those neutral colors really represented what I was feeling on the inside- battling with a feeling of lack of self, a monster, guilty and shameful that I thought I did something to bring this on.

It was the during a summertime I realized the joke in having such a great attachment to a scarf. It came from a bad tan in Red Bluff. Red as a beet face, with a bright white scalp.

The final stage of coming out bald was when I was with my friend- we walked to the post office- I completely forgot I was not wearing anything, we made it half way there, I realized- paniced and wanted to go home. My friend said no- we are not walking back. I remember being so mad at her for not letting us go back- why is she making me do this? The world is looking at me!

She stopped me and looked me straight in the eye and said. "No one is looking- you are fine. You aren't going to die by walking to the post office." We continued on. During that walk I swear I thought I saw children falling into doorways, people walking into things, cars swerving, things exploding, I thought I was seeing a catastrophe. I was really quiet and in my mind. Next thing you know- my friend and I were back at her house. I looked down the street- and I realized I had survived. I was okay. And my attachment was gone- the scarves became the object at the bottom of my sock drawer.

-------------------------
Beauty Parlor 101:

The Curtis' are like an italian family (even though we are half german/ half scottish)- when you go on a trip you take the kitchen sink and the family goat, figurative speech. About a month after shaving my head, my mom said- well I guess we need to get you a wig. I said- "I guess so". So as expected, mom got in the car, dad got in the car, the two dogs, bags of apples for grandpa, the dog beds, our bags, and the rest of our nonsense things that I doubt we needed for me to get a wig. Our four hour trip to San Rafael, Ca turned into an 8 hour leg journey, how usual car trips went for our family.

We pulled into a small parking lot next to an old Victorian in San Rafael- this is where I am going to get my wig? Is it at someone's house. We made our way in to the nicely restored home to find a waiting room much like a dentist office. And I don't know about you but when I am in the waiting room of a dentist office- my blood pressure rises- pain is usually involved and I wanted to get the hell out of there. The secretary gave us insurance papers to fill out.

I looked around searching for the red checkered 1950's floor, the hair curling and drying machines, the fumes of hair dye, and women named ronda or vonda telling the latest gossip from the town. All I saw was magazines stating "cancer and you", "aging and you", "golf weekly", and insurance papers- stating what is your need? Is it cosmetic of medical?

A couple in their 70's came out and I heard them say- "poor child- she is so young" they gazed at me and I could see they were processing my death from cancer. The secretary called me "Heather, we're ready for you."

I got into a the room of wigs, oddly to my surprise- the room was decorated very similar to a young girls bed room with a vanity table, curling irons, scissors, and, wigs on maniquin lined the walls. The woman, was sweet and said "let's find you something fun." I knew I was in the twilight zone at that point and would have not been surprised if killer clowns were going to pop out.

For about two hours- she trimmed, tucked, and styled a wig. And finally all I saw in my the mirror was a girl I didn't like from my high school. All I saw in the mirror was not me. After two hours- I was exhausted- I lied and said- that's it- that's what I want. I looked in the mirror. I was sandra dee from grease. They gave me a moment and I said Hi sandra- this is me.

I got back to my grandfathers house, my mom said- why don't you wear the wig to dinner- I said yeah I guess so- I went to the restroom- put it on- I looked at myself in disbelief- where is Heather- where am I? Who the hell am I? I took the wig off- and told my mom I wasn't wearing it. I never wore it. I felt a little bad- my mom spent so much money on it- but it was always a good part of halloween costumes in the future.

Out of the whole experience with buying a wig- I realized I was not going get the experience of the beauty parlor- there would always be a sphere of twilight zone between me and standard American grooming experience. I was different- and I wasn't going to get the chance to be that woman talking to vonda or ronda about my womenly things and happenings of town. I was separate from that experience.

-----------

Socially- I heard rumors of concern for me from my peers: Is Heather sick? Does Heather have cancer? Is Heather, like... dying?

But I remember feeling the pressure of dating.
My friends would tell guys-
"ohh what do you think of my friend Heather?"
"Heather Who?"
"You know taller girl, blue eyes, bald".
"oh yeah the bald chick- she's cool, I guess. Hey Kenny- get me another budlight" (yeah I went to too many tire fire- hick parties- maybe that was the issue haha)

I had a friend that said she felt bad for me that I was bald. "I mean it's going to be hard to find a guy to get over that your bald" (Note: I'm not close with that person anymore)

I had people that said I had demons that were in me. I got from other's that God is punishing me. I also got that I lost my hair to cell phone radiation and wanted me to speak about it.

-------

The biggest part was my idea of who I was in dating. I didn't date much in high school- was a late bloomer. So A) I wasn't that interested in dating until I hit college- because I was in a different hormonal place as my peers, and most of the boys in my school were either brother status or waste of time status. B) I did really believe that I wasn't worth the time to date- I had built up- like stated in the drivers license story- that getting a man- required certain assets- and if you didn't have that- thought luck- your out of the game. Very Darwin survival of the fittest attitude. Fortunately- that thinking has changed- but I catch my self with self- defeating thoughts at times and have to over correct.

So for a female teen to lose their hair I feel the top three issues was:

1)Identity and Femininity (Do I have to now over-feminize myself too make the point that I am woman?)
2)Dating/ sexual appeal
3) "Coming out" as bald
-------------------------

I suffered a year long amount of depression. But after the first year, I had a spiritual realization. And the things that got me through was a spirituality, positive encouraging support networks, and art. I began painting and photography- and found it as mediums in which I could escape from my negative thoughts, and then I started using it as a way to voice my pain- and allowed me to start making claims in my identity. It allowed me to explore- "alright now who is this Heather Curtis person- now post hair loss."

Spirituality- I am a big believer and appreciator of all walks of faith. I grew up presbyterian, so the easiest for me was to claim back into a tradition in which I knew. It was extremely challenging because I had a dicotomy of anger towards God- but also this need to have a guiding light, if you want to call it that. I needed a rebirth. (haha - yeah so many jokes of the second coming of christ etc...) But I bagan researching different walks of faith, I got coupled with a youth leader that I could dicuss the bible- and ask "hard questions", she challenged me extremely- we disagreed quite a bit- but I valued her insight because it allowed me to clearly define what I needed in my walk of faith/ spirituality. I am a believer that we got a spirit in us, guiding us, helping us to find reassurance and hope- to work towards love and justice for everybody. I have found a saving grace in my loss. Through spirituality, support, and art.

Support-
Let's just say- I have family issues- that goes into a deeper psychoanalysis of my life- I don't think I will smear that out. But Parents- even though there was the teen angst, family history issues- my parents were there for me like no other. My mom would always say- "this too shall pass"- those were some words that made me survive the first year of my hair loss. My Dad was a huge comfort as well- always reassuring me to keep my eye on the prize of life- and good things will happen- education was the key. My sister and I became friends again because she wanted to be there for me. And I almost have to thank Alopecia for strengthening my relationship with my sister. Friends and family really came together to let me go through it- how ever I needed too.

Later in college I remember a child screaming in a store calling me a monster and that I was scary- it broke my heart that I might upset kids with just being me. But I realize now- poor parenting in that situation, and if I am comfortable with my hair loss- children will be too. And that goes with a lot of life. And not wearing a scarf- when I was cool- the world was cool. And when odd awakenings about my hair loss, or weird encounters with inappropriate comments- I take it with a grain of salt- a deep breath and a laugh to myself- ohh the work yet to be done in my myself and the world, but this too shall pass. And keep moving.

As for Alopecia with younger kids. My first bf in college lost his hair when he was six. He didn't talk about it much, he said- he had his hair back and it was too traumatic to talk about. it was something in the past. Our personalities didn't jive well and broke up 3 months later. But he did state he received teasing.

Also good books for kids experiences with kids with Alopecia Areata is:

Princess Alopecia
And
The Girl with no hair

ALSO- the main website for the National Alopecia Areata foundation is

www.naaf.org