Aug 27 2014

Revelations of an Alopecian (a journey into self-acceptance)

Published by at 7:46 am under healing

expose

This post is a departure for me, in that I normally limit my musings to those directly related to the subject of art or teaching. But to some extent, my art has always been related to self-exposure in one way or another. Usually it is about turning myself inside out: revealing the dreams come come through me. 

There’s another aspect of myself in which I’ve felt quite vulnerable throughout my whole adult life, which now seeks to be fully expressed and released.  Since I was a teen, I’ve had alopecia, which caused me to lose my hair.  Alopecia is an autoimmune disease where the body’s immune response is to attack its own hair follicles, as if it were a foreign invader.  It is estimated that approximately two percent of the population will be affected by alopecia at some point in their lives (around 5 million people in the United States alone). So it’s really not incredibly uncommon, though many have never heard of it because a great number of alopecians hide their loss.  Examples of famous alopecians include Humphrey Bogart, Princess Caroline, and Christopher Reeves.  It can be emotionally debilitating to lose your hair, and most of us are not comfortable revealing such vulnerability publicly.  Fortunately for most, the loss is temporary…  and for the great majority (98%), the loss is partial (alopecia areata).  I am one of the rarer cases for whom the condition affected my whole scalp and body (alopecia universalis), and its effect has been quite permanent (35 years of my life, so far). 

 

I feel compelled to tell the story of this loss… and of my growth into acceptance primarily because I know that we all struggle with self-acceptance to varying degrees.  To finally accept myself exactly as I am is a great blessing that I feel is liberating me in ways that I never would have expected. I just turned 50, and at this age many women begin to feel a declining sense of self (at least, if they have not found something deeper than their appearance to create their sense of self-value).  In contrast, I feel that I am finally growing into myself. I feel more beautiful, braver and more self-aware.  I think I am also less likely to let things upset me which are of no great importance.  But it has taken the journey of many years to get here.  Here is my story.

 

I was all of fifteen when I started noticing unusual amounts of hair falling off into the shower, or left in my hairbrush or comb.  The first spot was dime-sized.  When I started to develop several, I cried to my parents, begging them to take me to a doctor (we didn’t have health insurance, so our parents rarely took us to doctors unless we were really sick).  I thought it was odd that no blood work was done, no tests to determine what caused my condition.  I was simply told that I had “alopecia areata”, that it is an auto-immune condition, and that there was no known cause or cure, but that since I had more than 70% of my hair (at that point), that there were some things they could try.  So began the experimentation with steroid injections, doses of rogaine, and topical ointments that made my scalp burn and itch, in attempt to stimulate hair growth.  None of it did a bit of good and I continued to chase bald spots around my head.  Some spots would grow back in, only to be replaced by other spots, so I tried to cover them artfully by combing my remaining hair over,  and pinning in place.  Eventually, I lost more hair until I was completely bald.  My worse fears had been actualized, and no one could provide me any comfort or hope. 

 

I started wearing wigs to simulate some sense of normalcy. To go to high-school wearing a wig is the ultimate challenge. Everyone knows its a wig, and no one dares speak of it, unless they are a bully.  And there were a few.  More than that, I could hear whispers and laughter.  I felt humiliated, and I couldn’t do anything about it.  Except to withdraw.  Needless to say, my social growth was a bit hampered during my teens and twenties.  I had a few friends and a loving family who accepted me as I am and who helped me feel acceptable, but for the most part, I survived because I found myself in my self-expression through art.  If I had not found a means to express the beauty within myself, I am certain that I would have fallen into an inescapable depression.

 

And that’s not to say that I didn’t succumb to occasional bouts with depression.  It’s not easy being different, especially when that difference makes you feel like a space alien.  To reveal this difference was simply too challenging for me for many reasons.  For one, I am generally shy.  I don’t like having a spotlight on me, and this is something that would definitely make people stare if I went around uncovered. There’s a whole range of stereotypes that go along with hairlessness, including cancer (undergoing chemotherapy), being radical, an anarchist, or being butch/lesbian. I don’t identify with any of those stereotypes which is part of the reason it has taken a long time to embraced this fully. To have your hair fall out is quite a different experience from making the decision to shave it.  This is verified by the testimony of many cancer patients who state that losing their hair was THE most difficult part of their treatment. You would think constant vomiting would be more distressing, but no… seeing yourself visually “fall apart” in such a dramatic and physical way is completely devastating, especially when you have no control whatsoever. (At least cancer patients know that the hair loss is temporary, whereas alopecians don’t have this certain comfort).  And each variation of loss is a new struggle: from patchy loss to complete baldness, to losing eyebrows and eyelashes. Each loss needs to be grieved.   And to be told by doctors that there is no cure and that I should just “get over it” and wear a wig for the rest of my life was the ultimate condemnation.  

 

One of the most horrid clinical experiences happened early on, soon after my diagnosis at the local teaching hospital.  I was sitting in one of the patient rooms, my scarf removed, and was waiting for the doctor to return to the room when, without warning or permission, he brought a dozen interns in to witness the “alopecia case”.  Being bald to strangers as a teen was about as vulnerable an experience as being completely naked.  The doctor apologized when he saw the terrified look on my face, but I never got over how terribly unprepared some doctors are in regards to treating people with anything more than clinical interest. After years of ineffective “treatments”, I gave up on doctors and decided to pretend there was nothing wrong with me.  This may have been escapism, but at the time, it was the healthiest thing I could do for myself.

 

I learned to live with hair loss, but I was still hiding for many years.  The wigs made me feel more normal, and many people didn’t know the difference.  There are some people who didn’t know about my condition until I revealed it years later.  At the same time, there were many who knew something was going on, yet they felt shy about confronting me as to why I was wearing a wig, and they could see that I wasn’t comfortable talking about it, so it became the elephant hidden under the rug.  Eventually the pain wore off and I could speak more openly about it. Transitioning from wearing wigs back to wearing scarves made it easier for me to approach the subject because I no longer felt like I was hiding.  It feels more natural for me to wear a scarf.  It is more comfortable physically, and I can still pretend the long tail of my scarf is my pony tail (in various and changing colors!)  And I suppose I am lucky that as an artist, I am not expected to look any specific way.  I don’t have to fit into a corporate image of what is considered acceptable attire.  I have a rather bohemian style, and enjoy that this has become part of my personal expression. 

 

 I wish that I’d been able to find complete acceptance at an earlier age, as I could have avoided a lot of pain.  But the psyche opens up to things only when it is ready.  One cannot force a seed to open or a flower to bloom.  People sometimes tell me that it’s great that I’ve learned to see the beauty within myself. But the truth is that “inner beauty” is not something I’ve felt challenged by. Maybe I’m lucky, but I’ve always seen my inner beauty. What has been difficult for me is to see myself as beautiful outwardly. Evidence to this fact has been my life-long avoidance of mirrors. To accept that I am beautiful is not vain… it is to truly challenge the stereotypes that culture places on us, and changing that perception is a very difficult thing to rise to because we are surrounded by it daily, because it is human nature to be self-critical, especially for women.  

 

Here’s a story that revealed to me just how important hair is to most women:  I was standing in a check-out line at a grocery store when my eyes fell upon a picture of Demi Moore on the cover of a magazine.  She was completely bald, as it was for a role where she had to shave her head.  I stared at it because I’d never seen such a beautiful, bald woman (save for Sinead O’Connor, perhaps).  I think I may have muttered “Wow, I can’t believe she did that!”… and the cashier decided to share her opinion that she couldn’t either, and that she would NEVER shave her head.  I responded that it was for an acting role and she was probably paid a lot for it, to which she responded that she wouldn’t do it for a million dollars!  So I’m left thinking, “Really? You wouldn’t suffer a temporary loss of your tresses for a million dollars? Is that how much our hair is worth to us?  No one paid me, and I have to suffer this permanently.”  With that thought, I really wished I had pulled off my wig and left her jaw dropping.  I wasn’t ready to do this at that point in my story.  Much later, I did it at a party once, and I can tell you that EVERYone’s jaw dropped!  It was quite liberating, and one fellow told me he couldn’t get over how sexy it was! That was the first time I ever felt that having a bare head could be sexy to anyone, so it was another small step in self acceptance.  Still, exposing this vulnerability for a brief moment while tipsy at a party is not the same as going around exposed all the time.  I still choose to cover up with scarves, but I am feeling more inclined to take it off more often, when in comfortable company.

 

Here’s another story which illuminates how important it is to be surrounded by those who love, support, and accept you when you are going through anything that is as challenging as hair loss.  By the time I reached my 30s, I had a group of loving friends who wanted to ceremonially celebrate my baldness because I had expressed that I was still challenged in my acceptance of it (even though I had dealt with this problem for half of my life at that point).  So my friends gathered around me and painted flowers on my head, while playing music.  It felt so good to be celebrated!  But there was a fellow there who I didn’t know, who was staring at me critically from the corner of the room the whole time.  I felt unnerved by his presence.  Finally he asked why everyone was painting my head and I said that they were celebrating me.  He simply couldn’t understand why anyone would want to celebrate my lack of hair and said so (he was a long-haired man himself).  Years later, that was my primary memory of that event.  Even with several people loving me, the one voice I heard most is the critical one.  I still ask myself why it is more normal to take in the critical voices than the accepting ones.  It’s simply an internalization of the larger society’s prescription for what is acceptable.  Time to turn the table on that one.  I choose to love myself now and forever.  Through this self love, I have so much more to give to the world!  

 

 I have noticed other women within my social circle have been going through their own struggles with self image (as expressed in occasional facebook posts, for example).  From this, I realize that my struggle is not completely unique.  We are all challenged by the media representations of what we are supposed to look like.  There are expectations about what is considered attractive in regards to hair, skin, size, age, etc.  And if you don’t happen to fit within the constraints of socially acceptable parameters, you are made to feel less than, or ugly.  So I share my story as a means of example.  We all need to look within ourselves to find our inner beauty and to bring that out into the world.  Because truly, that’s what flavors people’s perception of you most.  And of course, it is important to take care of ourselves…. to treat our bodies with the respect they deserve by getting regular exercise and by eating well.  But beyond that, we just need to learn to love what IS and to not try to fit anyone else’s prescription of what you are supposed to look like.  We are not our hair, our skin, or our bodies.  No matter who you are, you will never be able to meet that standard of “beauty” that is imposed by a culture that is contrived to sell you things that will make you more perfect, beautiful, and sexy.  Learning to love what is YOU, to nurture yourself and to walk bravely in self-knowledge is the ultimate beauty.

 

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September is Alopecia Awareness month!  Feel free to share this article with anyone you feel may benefit from learning about alopecia (or self acceptance, in general).  To learn more about alopecia, or for support for anyone experiencing it, please visit: National Alopecia Areata Foundation

 

11 responses so far

11 Responses to “Revelations of an Alopecian (a journey into self-acceptance)”

  1. tom says:

    Very honest – what a beauty you are!

  2. Nicely done! More when I think upon it. . .I’d still love to meet you, in person! But I said that when I 1st saw your art in San Antonio airport flying home from an industrial show (& I certainly don’t remember what THAT one was!). . .

  3. Alea Bone says:

    It is a gift to be so vulnerable and strong at the same time. You are an inspiration in so many ways. Thank you.

  4. Carolyn says:

    Wonderful story, Robin and such a great example of self-acceptance and learning to love who you are. I will be sharing this!

  5. katie says:

    Its interesting too that you have really a bag of riches when it comes to idealized beauty. Big green eyes, prominent cheekbones, a gingers freckled complexion-you are white, slim, not disabled. (what i am getting at , is you look more like the people on tv than 90 percent of America,even without hair).I think a great deal of your trouble came from timing- if your alopecia had come on in say your thirties, by then your obvious physical attributes would have received enough praise to override the horny assholery of insecure boys and girls.OR if you had been born in 2000. I must say ,kids now have a much more diverse and sophisticated view of differences than the deep dark seventies. I remember meeting you and being immediately struck by your pain and isolation. And Now! Look at You! As wonderful as you always were- congratulations!.

    • Robin says:

      Thanks for your comment, Katie. Yes, when I met you during our artists residency at Anderson Ranch, I was still not talking openly about my hair loss and was quite insecure about my appearance (and even about my art!) I’ll admit that I’m lucky that I have a “nice face” which helps when you have no hair… but I don’t consider myself any type of idealized beauty. I should probably also admit the fact that I am not “thin” by any stretch of imagination. I am at least 25 pounds over my ideal weight, and dealing with body image is another thing I have struggled with all of my life. I just chose not to speak directly to that point since I wanted to stay on topic with this specific issue. Even being freckled was an issue growing up! (You didn’t see a lot of freckled beauties on magazine covers, though it’s becoming a little more common today). You are right that a lot has to do with timing. People do seem much more accepting of differences today, and I appreciate that many of today’s youth are much more embracing of differences such as race, gender-identity, body types, etc than our generation was. Thanks for pointing that out!

  6. Wendy Ice says:

    Robin, how lovely, brave and vulnerable of you to share this experience and your insights. I’m trying to remember if you mentioned this when we had lunch way back when. I don’t think so, because I’ve always assumed your scarf was simply an attractive and artistic fashion choice. I was also surprised to learn your age—I imagined you were much younger.

    I particularly resonated with this: “Even with several people loving me, the one voice I heard most is the critical one. I still ask myself why it is more normal to take in the critical voices than the accepting ones.”

    Oh, how I relate to this. And, as I reflect upon it, I realize that this notion also pertains to the comments of any one individual. No doubt various family members and partners have said thousands of kind and supportive things to me over the years, but it is those few ugly words that stand out and get remembered. We are so very hard on ourselves.

    You are beautiful, inside and out.

    • Robin says:

      Thanks for your comment, Wendy! Most of the time, I don’t even think to mention anything about my hair loss to people I meet. It is usually a non-issue. Which is why it might seems strange that I felt so compelled to “come out” with this blog post… but it’s only because I am in the habit of ignoring it, even though I know some people wonder why they always see me in scarves, etc. Comforting to know that many people don’t think much of it, or that it’s simply a matter of personal style.

      Yes, I do think that many of us are so very hard on ourselves, based on the fact that it’s easier to “take in” other’s criticism than others’ praise of us, sometimes. For me, it’s partly that I expect my friends to love me because they know me.. whereas I will view the critical voice as the way most others might see me (who don’t have the benefit of knowing me). Much more healthy to give higher credence to the beneficial voices. Whatever we choose to believe about ourselves defines us. So I am making a conscious effort to take in more of the positive and to view criticism more constructively.

  7. marianna says:

    You are GREAT! I can feel you! 🙂

  8. Patianne says:

    I have to agree with Katie. You’re gorgeous!

  9. Stephen says:

    Being open is a skill that most of us either avoid or inch our way forward toward….you are blessed in how you have embraced yourself and in that allow us all permission to show up as we are.

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