Alopecia - Part I of III

Alopecia - Part I of III

A few weeks ago, I sat in a waiting room.  I was nervous and sent my family a few text messages that read, “I’m waiting. I’m nervous.”  I read some pages on coffee in books Nick had recommended.  I tapped my fingers on my knee that was twitching to its own imaginary rhythm.  A man opened a door and called out my name.  I stood up and then hit my leg on the corner of a coffee table on my way towards the door.  Hurt but even more embarrassed, I followed the man into a hall of many doors, pretending I had walked into no such table.

Sitting down in front of three serious looking people dressed in medical attire, I was asked when I first noticed my hair loss.  That question took me back to a memory I had forced myself to forget.  A memory from when I was about sixteen.  My parents were sitting on the couch across from me, looking concerned as parents do by tilting their head this way and that and exchanging glances with one another.  They both said things that I tried not to hear.  My dad had been saying something about not washing my hair as much.  My mother had added that I should wear a cap while I was out playing tennis in the sun for hours every day.  At that point, my hair was thinner than all of my sisters.  I had never thought much of it, but when I was sat down by my parents… I was forced to think about it.  Thinking about it caused me to cry.  Crying inhibited my ability to speak, and thus, shrugging was the only way to answer my parents whenever they asked me what I thought the reason of my thin hair could be.

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Maybe it was because I had reacted so sensitively to the topic.  Maybe it was because my parents had six kids in total to look after.  But my hair was never brought up in such a formal manner again.  However, that memory stays with me as the first time I realized that I might have something about myself, specifically my appearance, that was...wrong.

From the ages of 13-17, from playing national junior tournaments to briefly competing in professional tournaments, my focus was unshaken.  What was important was that I was eating right, sleeping right, and that my hair was out of my face.  I only heard complaints and comments on my hair when I forgot a hair pin, hair tie, or visor/hat.  The amount of hair on my head, slowly and sneakily decreasing, never mattered.  Not to my parents or coaches, and honestly, not even to me.  After a time, I just accepted I had thin hair. I didn’t really know that I had thinning hair.

In college, I started dating.   As a lot of you know, I was in a long term relationship with a guy.  He was able to point out my thin hair with some endearment.  He joked about how large my head was, how no one had enough hair to cover a head my size.  To save a cruel joke, he always talked about how if my head wasn’t so big and round, he might have never seen me in the first place when he first fell in love with me. (Awe, sweet?)  I saw it as sweet in the same way that he found the birthmark on my back to be the same shape as the island in Hawaii he was born on.

Sometimes the reminder from him of having little hair, a big head, or any marks at all on my body made me feel embarrassed, but I preferred it to how another ex handled my peculiarities.  When my hair would come up in conversation, he would deny it all together.  “Your hair isn’t thin at all.  You have plenty of hair.”  I could understand that he was trying to make me feel good and rescue me from possible hurt feelings, but I also felt bad that he couldn’t see my shortcomings and find a way, if not to love them, to accept them.  My hair was so thin, it hurt to hear him deny it.  To lie. But again, both boyfriends had good intentions, really.

I’ve lived in Salt Lake City for eight months now.  In October, I had a total of $2.33 to my name.  That was right after I took a spontaneous two week trip to Seoul, Korea with some of my family.  So...I knew what I was getting myself into financially there.  In fact, that’s where my money always goes: travel, food, quality time with quality people… It wasn’t until quite recently that I had saved up enough money and felt stationary enough (you have to make doctor appointments quite far in advance) to consider seeing a doctor about my hair.  I had the funds, I had a commitment to being in SLC for the next couple of months because of work at Three Pines Coffee, and okay… In the last six months, I had lost a lot of hair.  I don’t pay much attention to hair, but… I started noticing the extremity of hair loss I was experiencing recently and decided it was time to make sure the hair loss wasn’t a symptom of something more serious.

Sitting in a strange chair in a strange office seeing a doctor for the first time in years, I felt strange.  After exhaustive blood tests, a scalp biopsy, and a series of never ending questions that ranged from my diet, my stress-levels, to my child-bearing abilities, the doctors found that I was 100% healthy.  No cancer. No dysfunctional thyroid.  No crazy hormone imbalance.

I was relieved.

And then I was told that I had alopecia.

As far as I was concerned, I had no idea what the doctor was saying.  He went on to explain the different kinds of alopecia that existed, what kind I had, what I could expect, and what they didn’t know what to expect.  Although I didn’t have alopecia areata or universalis, both are much more aggressive, I was still losing an amount of hair that would be much more common in senior-aged women.  So basically, if I was a grandma, my hair loss would be “normal.”  At 23, the doctor explained, the hair loss I was experiencing was pretty severe.  In fact, the doctor explained, the places where I was losing my hair and how much was “fascinating.”

...Well, I thought, at least the doctor really likes studying hair behavior…Glad he found his passion...

The doctor remembered himself and then asked me how I felt about my hair loss.  I thought about it.  And probably since the time my parents had confronted me in the living room in my mid-teen years, I really actually thought about it.  I thought about me trying to style it certain ways to cover up the areas on my head that were nearly balding.  I thought about me holding my breath when I let a man run his hair through my fingers.  If you recall, in many of my past blogs on romantic encounters, I usually mention the gentleman i’m writing about combing one of my wispy strands of hair behind my ear.  That’s a really scary moment for me as I’m always expecting them to react with, “Jesus, where’s the rest of your hair?”  I thought about the days I came home from work with my hair in a skinny ponytail or bun, and how I would look in the mirror and see all of the patches of my scalp through my thin strands of hair.  I thought about the days I walked right past the mirror because I just didn’t want to see my hair struggling to cover my scalp.

“I feel fine about it really…Just fine...” I whispered in reply.  The doctor smiled.  He didn’t believe me.  He sat there nodding, waiting for me to confess my true feelings on my hair, or lack of.  I couldn’t say anymore, so I just let the silence sit there between us like some invisible lie detector.

Cue the paragraph where I explain the beginning of my long mental breakdown. Once the doctor asked me how I felt about having alopecia, I shut down in an attempt to remain calm.  My feelings floated up to my head and asked why I had purposely put myself in a situation that was so unpleasant.  Why was someone asking me about how I felt, and why did I feel absolutely obligated to tell him?  I wasn’t very helpful with the rest of the questions he asked.  I managed yes’s and no’s and one or two word replies, trying to keep the dam inside me from breaking.  I also listened to the following discussion he brought up on possible treatments from a vast distance.  His words were floating in a sky of clouds while I stood alone on an abandoned hillside somewhere in that balding head of mine.  I decided I would save his words for later, bottle them up in some reliable compartment in my head, digest them when I could.  After dealing with my father for so many years, this was easy as I had had plenty of practice.  I had an assortment of useful bottles: The Save for Later Bottle, The Straight to Trash Bottle, and The True but not Helpful Bottle...

As far as shedding tears went, I was actually able to hold it together until I made it to my car.  Empty parking lots really cater to hysterical breakdowns, let me tell you.  I sat inside my faithful Toyota with my hands loosely hanging onto the steering wheel.  And then I cried.  I cried myself good.  I cried myself stupid. All of my feelings about my appearance, my insecurities, my hair...They were finally at the surface, a place sixteen-year-old Jade had successfully kept them far away from for so many years.  What the fuck was alopecia anyway?  Did I really have a disorder? A disease?  But my hair… But how?

When my eyes finally cleared and the first wave of many tears had past, I drove home. Nope. That’s not true. I made a stop. I drove to Three Pines.  It was past six, and Meg was closing up shop.  I walked in quietly.  I saw her polishing the La Marzocco.  She looked up and smiled hopeful.  I took a deep breath. I told her I had alopecia, that my hair was deserting me slowly but surely.  Then I cried...again...of course. First of all, she hugged me. Meg gives nice long hugs.  I cried into her shoulder embarrassed but grateful, and once recovered, she asked about treatments, second opinions, any other options...

It was then that I pulled up the doctor’s words on treatment from a Save for Later Bottle in my head.  I explained to her (and myself) that my hair loss could stay the same or get worse at any rate (very slowly or very fast depending on variables like genetics, stress, etc.). There was a type of medication I could take (everyday for the rest of my life if it happened to work).  I had about a 30% chance of getting my hair back to where it had been or at least stopping the hair loss.  The catch?  Well, first of all, patients experienced negative side effects after discontinuing the drug for up to six YEARS later.  Second of all, birth defects and other large risks with my lady parts were also side effects to women taking the drug.

Well, OK.

Pretty big risks for something like hair (though beautiful as it is).

Rogaine was another option... Laser therapy, another...

No matter the treatment, no matter the risks, they were expensive and the biggest turn off (besides the, you know, risk of birth defects and all) was that I would have to continue the medication/application/practices for the rest of my entire life.


I’m Miss Low- Maintenance. I’m Miss Pack-Light Adventure. I’m Miss All Natural!

...To be continued.

Alopecia - Part II of III

Alopecia - Part II of III

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