Alopecia: Part II of III

Please find Part I here.

After leaving Meg, I took a few days to myself.  I worked as much as usual and did my best to be as bright as I could be.  I tried saying, “Good,” when customers asked how I was, but ended up falling on a, “It’s been a little rough,” default answer.  It wasn’t perky, but it was honest and became my compromising answer.  One customer leaned forward over the coffee counter and looked me straight in the eyes: Are you okay?  He offered to bring me food, he said he hoped everything was okay...and if he had been an ounce kinder, insisted to be there for me for a second longer, I would have started crying while tamping his soon-to-be 8 ounce espresso like “OK, you got me. I feel absolutely terrible. Now let me cry all over your shirt.”

I took long walks and long cries.  Knowing I had a disease, knowing I would lose my hair eventually in different areas at different times at different rates on my head was hard to imagine...Suddenly I felt stripped of my femininity, stripped of the power to be a woman.  I was embarrassed about being inadequate, not as a human being, but as a female in today’s society.  I couldn’t even tell my closest friends about it the first few days because I just felt...So humiliated.  I didn’t feel like I was...enough.

It was really hard to set up the conversations too.  Speaking has always come naturally to me, but this was a hard topic to introduce into a phone call:  “How’s your sister doing? By the way, I have alopecia. Not big deal. But it sucks and I hate it. Don’t feel sorry for me, but you can feel a little bit sorry for me, because I certainly do….”  I didn’t know how to preface the “I’m suffering from hair loss” bomb without leading my friends and family to automatically jump to the conclusion that I had cancer.  On the other hand, I didn’t know how to approach the topic with an appropriate level of seriousness that showed that it was an ordeal that I wasn’t taking lightly.  “So, kind of a big deal. I’m sort of losing my hair...No, no. Not cancer. Just losing my hair. Yep. No big deal, right?”

Some talks were more awkward and uncomfortable than others.  I felt like I was fighting multiple battles with myself, society, and family as if I was having conversations within conversations.  

With myself, I went from a lake-sized amount of embarrassment of being the girl who wasn’t exactly a goldilocks to an ocean of embarrassment for being so emotional about “just” hair.  I would look in the mirror and see my scalp and stringy hairs struggling to do their job and then let the tears slide down my cheeks in a dramatic soap opera kind of a way.  And then I would get flustered when the big picture loomed its way over my head, when I was reminded to be thankful to have arms, legs, and a healthy body.  I would dig my fingers into my head and low-key hate myself for being so childish, so greedy, so over dramatic and superficial about hair when people had much more serious issues and concerns.

With society, I started to ask questions.  I would go grocery shopping and wonder why the man in line with a balding head was acceptable but any woman that had a bald head was either a lesbian or a cancer patient.  Why in today’s world did that matter at all?  Why did we feel ashamed of baldness in general?  Why are some of us tempted to take pills that could possibly cause birth defects, emotional instability, and much more just to put hair on our head — something that is purely aesthetic?  Why did that matter SO much to us?  And why did it matter so much to me? And as far as that goes, why was I so ashamed about how much being diagnosed with alopecia depressed me?  Why was I afraid to admit that I DID care about how I looked to society as well as to myself?

With my family, I was given a range of reactions.  It seemed that all at once, everyone started researching different treatments.  It was interesting to see what feedback I got from different friends and family.  Some sent photos of green wigs as it is my favorite color and they knew I could possibly get excited about the idea of something green.  Some simply offered an, “I’m sorry, but know that I’ll love you no matter what,” branch of support which was greatly appreciated.  Some gave me eyebrow advice because “Your eyebrows need to be on fleek if your hair isn’t.” Misty immediately offered to cut her hair if I wanted to have a wig made of real human hair that would match my skin/colors perfectly.  I don’t even know how I would go about doing that, but it was the thought that counted.  I cried then just because I felt so loved.

I also got a couple, “Let us help you hide your problem best,” reactions.  Although coming from a good place, this kind of reaction hurt the most.  Having alopecia isn’t exactly ideal, but I had never thought of it as an actual problem that I needed to go through great lengths to hide.  That was the first moment I began to feel that I needed to buzz my head.  Some friends and family sent me informative links on hair implants, holistic treatments guaranteed to regrow hair, and realistic everyday wigs.  All options were expensive, but that wasn’t why I kindly said, “Thanks, but no thanks,” to all of these different approaches.

Earlier, I had written that I was “suffering” from alopecia.  Somewhere deep inside the pit of my stomach, I had wanted to honestly find myself to be in the position where I could say I was living with alopecia, not suffering from it.  If I hid it, what would I be saying to myself, to society, to my family?  If I treated it like a problem, what other destiny did it have in my life other than to be a problem?  

For some reason I kept trying to look at it from a sister’s perspective.  If one of my sisters had alopecia, would I want them to choose a path that would lead to them learning how to accept who they were and find and surround themselves with people who would accept who they were as well as how they looked?  I kept picturing one of my sisters spending time every day trying to cover up her insecurities, trying to treat a “problem” with their appearance...It made me sad to imagine any of my sisters trying to hide any part of them.  I loved all parts of them...Though I understand the need to want to be accepted, to fit in, to feel beautiful...I understand there’s power there too.

Of course, this leads to questions like where do we draw the line?  If I think we should love ourselves exactly how we are, why do I even wear makeup?  Why does a boob job sound more extreme to me when a child with braces (wires bending bones in their skulls, mind you) is nothing out of the ordinary and totally acceptable?  Why do I even comb my hair in the mornings if who I am inside should be enough?

I still don’t have all of the answers...and society’s a bitch. (Yes, I’m also a part of society.) But being diagnosed with alopecia has definitely got me asking more questions about appearance, society, self respect, acceptance, and insecurities than I have asked in a long time. 

And, I never actually came to a conclusion.  In fact, I had been worrying, stressing, thinking so much about it all that I think my brain overloaded and my instincts came in.  To dig myself out of my own little hole, I followed feelings and left my thoughts behind. I trust my heart over my brain when it comes to most things. I think it came down to owning my narrative. It didn’t matter what everyone else did or wanted. What did I want to do? What made me feel better?

I was on the phone with someone, telling them I was most likely just going to cut all of my hair short.  This person couldn’t believe I was “giving up” so easily, that I wasn’t willing to wait and try out different options.  I sat on my bed in my underwear with the phone to my ear.  I closed my eyes and took a breath.  I thought of my skinny ponytails, my bald/ing patches, my hair inspections through a cheap Target mirror… I didn’t want to do that anymore.  I didn’t want to monitor treatments for my hair loss in successes or failures.  I just wanted to live simply and be happy.  This person on the phone couldn’t understand how exhaustive and stressful testing out new treatments was, how depressing and emotionally devastating it was trying to find ways to “hide” the bits and pieces of me that weren’t normal or universally beautiful.  

When I tried to explain myself, my words bounced off a concerned person on the other line, and so concerned was she that… she was too busy figuring out “cures” to listen to me when I said I didn’t want to cure anything.  I just wanted to be.

The fact was that I didn’t have cancer. I didn’t have anything that physically hindered myself.  All in all, with the exception of my hair, I was as healthy as the next person...Probably even more so to be honest.  My family and friends worked with me to help me see that it was okay to be emotional and upset about the fact that I was losing my hair.  They understood that I was frustrated about losing my hair and losing control over my appearance.  They didn’t think I was being silly when I was worried about how I looked and would look. By both receiving information on aggressive, expensive treatments and specialty online wig stores along with the “Dude, you’d be so badass if you do actually shave your head,” moments, they helped me understand that the power to be me and to feel good about me, inside and out, was only my own.  

Bottom line was they were there for me.  Great human beings called me “just to talk,” more in the last few weeks than ever. I got “Good luck” texts on days when I was going in for more tests at the doctor’s or extra opinions.  My mom sent me a package of my favorite kind of comfy cotton underwear that I love to lounge around in just because she knew it would make me laugh and… well...be comfortable!

To be continued…