Alopecia


March 2019

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!


November 2018

If having Alopecia has taught me anything, it’s that you need to change your perspective. You need to see differently.

I suppose we typically give thanks for our warm houses, the food on the table and being surrounded by family, right? I get it. I am totally with you. My insides are still aching from laughing so hard today with my family. But can we give thanks for the things that make us mad, annoyed or just plain tired?

I cringe when I see the laundry basket overflowing. Then I groan dramatically all the way to the washing machine and throughout the process of loading it and pouring the soap. I hate laundry. I try to snap myself out of it and think -WOW I have the luxury of picking out and mixing/matching all these clothes every week.

I also loathe grocery shopping. I hate spending money, I hate unloading and putting away all the bottles, cans, and freezer items. Once again, I try to snap myself out of it and think – wow I have the luxury of going to the store and buying whatever I want or more importantly whatever we need.

It seems like life is sometimes stuck in fast-motion. I often get upset that I don’t have enough time to spend with my friends, especially those who I’ve known for years.  What a luxury it is to have true, faithful friends, especially in a world where people are shallow and self-centered.

And the hardest of all – a fight with a spouse. It stings, doesn’t it? It is awkward, sticky, uncomfortable and leaves both parties feeling bad. But without that fight, we wouldn’t have the chance to make up and realize the love we take for granted everyday. We get the chance to relearn the reasons(s) we love our spouse so much (the ability to forgive and forget, anyone?!)

This Thanksgiving I am thankful for all that everyday stuff which at the time, seems like an obstacle but in actuality is a learning opportunity.

 


I wish this book had been around when I was diagnosed with Alopecia. But alas, that was a time before Facebook was invented and communication wasn’t as easy as it is today. Thanks to all the authors (old and young) for a great book of stories!


May 2017

I was shopping at a popular women’s retail store this week. It isn’t really my favorite because the salespeople are overly helpful (probably pushed by corporate). But I like their products and they are usually investment pieces, so I give them my business.
After a long session of waiting for the dressing room to be unlocked and trying on lots of things that didn’t fit, I finally made my way to the register, exhausted and fed up to say the least.
I approached the counter and handed my item to the cashier, who wasn’t exactly friendly. As I swiped my credit card and she wrapped my item in tissue paper, we had an unusual conversation:

Cashier: Doesn’t it bother you to go around looking like that?

(I looked down at my outfit, wiped off my face in case there was chocolate on it) then I realized what she was getting at. She wanted to know how it felt going around BALD! I must admit I had to bite my tongue from saying something sarcastic or funny. (It’s kind of what I do).

Me:  Doesn’t bother me, but it certainly bothers lots of other people. (HINT HINT-YOU)

Cashier is quiet for a moment.

Cashier: Well, what do you HAVE?

At this point I am flabbergasted that she’s asked me all this, a customer and stranger. But I am overly polite – Catholic guilt I suppose.

Me: Alopecia.

Long, silence.

Cashier: Oh. I do too. I hate it. HATE it.

I gave her the most abbreviated story of my journey with Alopecia and finally the questions stopped. We could relate as two women who struggle(d) with Alopecia. I then told her it takes a really strong woman to deal with it (hint hint). She smiled and I left.

I drove home wondering if the situation would have been different if I snapped at her or reported her to a manager. Everyone deals with their struggles differently. I dealt with Alopecia in a very private manner. Then finally I came to terms with it after making art. But what if I never had that outlet? I might be as upset and frustrated as that cashier is. And this is precisely why I am kind to everyone I come in contact with – YOU NEVER KNOW WHAT OTHERS ARE STRUGGLING WITH. Your kindness might help them. How nice to make someone’s day or put them at ease. This world is full of uncertainty and I like to take comfort in the fact that there are still some nice people around who are willing to listen and understand.


April 2017

I’ve had Alopecia for over twenty years now. And let me tell you, its been quite a journey. While it is the easiest of the auto immune diseases out there, one can’t dismiss the emotional distress that comes along with it. For quite some time I wore a wig. It was awful, to put it lightly. Over ten years ago I decided to ditch the wig. I realized it would be a battle because everyone has their own ideas of what a woman should look like. At one point in my career a customer asked me “do you stand up or sit down when you take a piss?” Some thought I was a lesbian. Others thought I was in a cult. I didn’t realize how many stereotypes existed for bald women!!

For a long time I had to keep explaining to people what Alopecia was because they thought I might have cancer. I cannot tell you the amount of people have stopped me on the street, interrupt my dinner at a restaurant or ask me at work about cancer. It is so difficult to sit and listen to a woman tell you about her battle (and triumph) over it and knowing you have to tell her you don’t have cancer. The reaction is the same, utter mortification or sincerest apologies.

Years ago I bit my tongue and tried to stay polite, and not interrupt these people from telling me their stories because I know they were doing it out of the goodness of their heart OR they really felt the need to express their feelings about cancer. And I am still very polite to people like this. But over the years I’ve thought about it and wondered how I would feel if I did have cancer, and had to listen to these people. Maybe I would be out to dinner trying NOT to think about cancer and then they would come by and remind me about it.

It is amazing to me how many people are so unafraid to approach a complete stranger and talk to them about such personal things. I could never do it! It’s one thing if you like my glasses, but its another to make an assumption about my health, based on my looks and then approach with questions or a statement.

‘Tis a crazy world!


2004-2005

Alopecia Series I + II

I.
In college I wore a wig to hide my Alopecia. I slowly started taking self portraits (not like smartphone selfies today) rather, shooting with a film SLR manual camera. Using my dress, manner,  makeup and setting, I snapped portraits to make statements about female stereotypes. Little did I know how much I would learn from the process. I had no idea how photography would change my life.

II.
After my self portraits, I really wanted to turn the camera away from me. Next, I studied my wigs. I threw them on tables and unwrapped the wig which were packaged with pretty paper. I watched them take on a life of their own. They were monsters to me at that point. They were the keeper of my secrets and my fears. I look back on the photos and recall some of my peers saying the photographs scared them because the wigs took on such lifelike quality.