An Open Letter to All of My Haters


Dear Haters,

First of all, let me start by saying that I don’t borrow ideas from ANYBODY. My ideas are my own, and if they happen to be the same as someone else’s, well, let’s just say all great minds think alike. Plagiarism is something I take very seriously, and I will not stand for being accused of such. I take great pains to make sure that I don’t use the exact words of others, and I give credit where credit is due – in other words, I cite my sources.

Second, for the record, yes, I have worked with an editor – and I am a published author as well. And if my blogs sound the same, it is because like all writers, I have a distinctive style and tone, and my message is consistent. If YOU read a variety of works by the same author, you will notice that consistency is a hallmark in all of their works. Whether it is Stephen King, Tom Clancy, J.K. Rowling, Toni Morrison, Maya Angelou, or even that trite Twilight garbage that Stephanie Meyer writes, each person has a unique tone and style to everything they put to paper, and it doesn’t change.  It may evolve with the passage of time, as most humans do, but at its root, the essence is still the same.

Third, the beauty of having an independent, individual mind is that I have the freedom to agree with some things people say and disagree with other things. Tact and “swagger”, whatever that is, is not required. I am not obligated by law or moral code to totally agree with everything that is said on Alopecia World, nor am I required to do the same for GAM. In fact, I have disagreed with things that GAM has said in the past in this very forum. It creates a meaningful dialogue, and rather than be attacked for it, dissenting opinions are welcomed and alternative points of view are considered.

Fourth, I maintain an independent blog called “Confessions of a MAD Alopecian”, and not only does it speak of the issues affecting all alopecians, but it touches upon my life in general. Thanks to you especially, I have been inspired to start posting on it more regularly – because there, I have the complete freedom to say what I want to say, and if you don’t like it, then you don’t have to read it. Most of my blog posts I publish simultaneously across all of my blogs (AW, GAM, personal), because I recognize that each blog reaches a wholly different audience, and I want what I have to say to reach as many people as possible. Using the diversification method ensures that not only does my message reach a diverse audience, but that I get a very diverse array of responses.

Finally, in answer to your question about my hair, I will say this. Make note of it, because this is very important: I am a human being, with human emotions, and one of those emotions is ambivalence. I have lived with alopecia my entire life, with brief periods of regrowth. In case you don’t understand what that means, let me make it very clear: that means my hair grew back a couple of times before it fell out again. I have lived on both sides of the fence. Having lived both with hair and without hair, my unequivocal answer is this:  What I want is to be healthy. Healthy means disease-free. That means I don’t want to be diabetic, hypothyroid, have migraines, or be alopecic. Yes, I have accepted the unpredictability of alopecia, but that does NOT by any means signify that I don’t want my hair to grow back. In fact, I enjoy cutting and coloring my hair when I do have it, and I would like nothing better than to have eyebrows to frame my face and nose hairs to stop the post-nasal drip that comes with changing weather and the allergies and colds that come with THAT.  However, I also enjoy the maintenance-free lifestyle I have adopted with not having any hair on top of my head and the money I save by not having to buy brushes, combs, shampoos, conditioners, styling products, and Drano to open hair-clogged drains. I also enjoy NOT having to shave my legs or get bikini waxes either. I enjoy that so much so that even if my hair grew back permanently, in its entirety overnight, I would probably cut it off tomorrow so that I didn’t have to be bothered with it.

In case you STILL don’t understand, let me make it even more plain – and trust me when I tell you I didn’t borrow this one from anybody: Alopecia robs the individual of CHOICE. I want to have the CHOICE to shave my head or wear a ponytail or a mohawk or spikes. I want the CHOICE to look like Bigfoot with big hairy legs, or be smooth as silk. I want a cure for alopecia because I want that CHOICE returned to me. There are 130 million people worldwide with alopecia in all of its various forms, and we are all in various stages of living with it, yet the one thing all 130 million of us want is that CHOICE returned to us.

Believe me when I tell you that I get it – I totally get that most people with alopecia want their hair back, and I totally get that the overwhelming majority of people that have alopecia have had some difficulty in how society sees them as a result of it. However, my message always has been and will always be the same: There is only so much self-pitying and hiding that you can do before you have to pick yourself up, dust yourself off, and move forward with your life. When you stop living your life because of alopecia, or your self-image is totally destroyed because of it, then guess what? Alopecia has won. I am blessed beyond measure to have a family and friends that never determined my value to them based upon my looks, or the hair on my body. I am blessed to have been taught that when you choose your friends, you don’t choose them for what they look like, but by the content of their character. And I am blessed to have had teachers, colleagues, friends, and family alike, near and far, that taught me that honesty is always the best policy, and to say what I mean and mean what I say, in spite of what others may feel about it. That strength is what has sustained me throughout my alopecia journey, and I repeat, that kind of strength is what is needed to beat alopecia once and for all.

What the alopecian community at large needs is UNITY – and Haters, you do nobody any favors by responding to a well-reasoned, well-worded blog post with outright attacks and name-calling, no matter how repetitive or crass or tactless it sounds to you, no matter which platform it comes across.  Censorship of such opinions is not needed either.  If you object to something in a blog, rather than resort to petty name-calling, why not reasonably point out WHY you object to it? You may have a very valid point that may not have been previously been considered, and would go much farther in moving the dialogue forward. If you object to it so much that you feel you can’t do that, then, just as I have the freedom to say what I feel needs to be said, you have the freedom to click the “Back” button on your browser and not read it.  Finally, consider this point:  The very opinion you have such an objection to may prove to be the life-saving words that someone else needed to hear in order to keep fighting, to keep living, to keep surviving.  Would you deny that to someone for the sake of your own bruised little feelings, or would you rather look at the larger picture and allow my words to help who they're going to help?

Thank you again for your response. You have proven to be very inspirational to me.

Sincerely,

A MAD Alopecian

Okay, so this morning one of my haters commented upon one of my blog posts, and this is what she said (I am deliberately changing names to protect the guilty):

"GLAM, did not post a few of my comments, whatever.I get it the squeaky wheel gets the grease! But after a while it gets really old and you replace it with a better one. I understand but you don’t know how to talk to people so they will really listen, you have no tact or swagger. All your blogs sound the same, and this one sounds like you borrowed from Jayne, you just twist it around to fit the mood and add some more big words and repeat yourself over and over. Have you ever worked with a editor? If you don’t agree with AW start your own forum.
I dont understand, do you want your hair to grow back?"

My next post is not only a response to this person, but an open letter to all of my haters.

I've been blogging about my experiences with alopecia and my opinion about certain mindsets within the alopecian community for several years now.  Throughout all of my blogs, the one thing that remains consistent is my approach:  I'm realistic, direct, and whether you love me or hate me for it, I'm fair and impartial.  This approach, and my blunt, straightforward opinions have earned me the names bully, condescending, know-it-all, cold, abrasive, bitter, and mean-spirited.  It's laughable, really; the people who know me best hear these names and they laugh, because the flesh-and-blood me is so far opposite these adjectives that the only logical reaction to them is laughter and amusement.

Perhaps I've become a victim of my own success as a result.  Perhaps there are just too many alopecians out there that demand that they be treated with kid gloves and everything mentioned about alopecia be sugar-coated and cottony-fluffy.  In either case, imagine my surprise when my attempt to post a personal blog post on Alopecia World was met with the message "awaiting approval."  Excuse me?  Awaiting approval from whom?  Since when did I have to get approval from "the masses" to share my opinion?  And then it occurred to me:  Most of the time, I can sympathize with the newly diagnosed, the parents of young children newly diagnosed, and those who, like myself, discovered Alopecia World and considered it to be a haven for us - an oasis of sorts where the newbie and the veteran alike could share common experiences, support each other, and dish out tough love when needed.  However, after a while, it honestly becomes tiring hearing all of the sob stories from those who have lived with alopecia for years who still can't leave the house because they are obsessed with what other people will think of their heads.  Eventually, that sort of negativity and despair is catching, and even the most optimistic person will start to zero in on their flaws, and the seeds of self-doubt are planted.  That kind of thinking is dangerous, even amongst people who DON'T have alopecia.

Being censored and prevented from expressing my opinion merely to protect the feelings and sensibilities of others leaves me with a sense of betrayal that cuts deeper than anything I've experienced to date.  It leaves me hurt, and angry to boot.  In the wake of the Occupy movement across the nation and the ever-increasing erosion personal liberty in this country due to the psychology of fear, I cherish my First Amendment right to free speech more than anything else.  That right has been defended time and again, and protected over and over again, and I don't for a moment take it for granted.  The paradoxical strength in alopecia awareness and perpetual emotional fragility is something that needs to be exposed and eradicated, just like the disease itself.  Yes, alopecians need to accept themselves as they are, because once you receive an alopecia diagnosis, you will NEVER be the same person you once were.  However, with that acceptance comes strength you never knew you had, and that strength is what is needed to attain progress in research, treatment, and the search for a cure.  And as much as it maddens everyone to hear it, I'm sorry, but not everyone feels like their lives have ended because their hair is gone.  There are quite a few alopecians that have moved on with their lives and adapted, simply because as humans, that is what we do - we adapt.  The ability to adapt is what got us through the Ice Ages, the Dark Ages, the Industrial Revolution, and the Technological Revolution.  It's what's going to get us through the Dark Ages of Alopecia, and it's going to get us where we need to be to find a cure for this thing.  Therefore, why censor it?  Why send the message that emotional fragility and self-pity is the only way to deal with this?

Today, I'm not standing up for others as I usually do.  Today, I'm standing up for myself to be heard.  I'm standing up for myself to demonstrate that we, as alopecians, do NOT have to hide under a rock or retreat from society because our distinctive look is not the norm.  I WILL be heard - with or without Alopecia World.

Benjamin Franklin once said, "He who is willing to trade liberty for security deserves to have neither."  Truer words have never been spoken, especially in the alopecian community.  I'm not willing to trade my freedom to say what needs to be said in order to placate the "security" of others or satisfy the dictates of political correctness.  Are you??

Your Alopecia Story Matters!

It doesn't matter if I post about my life with alopecia every single day of my life; if nobody is reading my story, then nobody is being educated on how important alopecia awareness is. If YOU don't share your alopecia story, then how are we going to ever find a cure?

Please share your alopecia story. It doesn't have to be grammatically correct or Nobel prize-worthy or anything major. As several people have told me, you have the potential to touch the life of someone with alopecia in a way that someone else without it wouldn't. Just think about your experiences with alopecia, your interactions with the people around you both with and without alopecia, what you would like others to know, what you wish you had been told when you were first diagnosed, and how you would like or not like to be treated.

For the month of September, in honor of Alopecia Awareness Month, I am going to answer one topic at a time in regard to my life with alopecia. If you are able, please also visit such wonderful sites as the National Alopecia Areata Foundation website and Alopecia World, a social networking site for alopecians, their friends and family members, and other supporters of people with alopecia in all its forms. If you're bold enough, as my beloved cousin is, shave your head to support an alopecian you love. Most of all, accept the alopecians in your life for who they are, not as you want them to be!

Happy Alopecia Awareness Month!

September is Alopecia Awareness Month!

In honor of Alopecia Awareness Month, you can add this twibbon to your Twitter avatar. Please check the site out now and help support Alopecia Awareness!

Bald really IS beautiful!

I really like working in the hotel industry, because there's never a dull moment on my job -- and sometimes I get inspired and encouragement from the most unlikely sources. For example, my hotel houses layover crews from Delta Airlines. A lot of the pilots and flight attendants come in on the same flights pretty regularly, so the opportunity is there to get to know them. And as always, the opportunity is always there to educate them about alopecia.

The past three mornings, I have received compliments from two pilots and a flight attendant, all of whom marvel not just at my skin and makeup (because you know I keep it sharp and on point!), but also take the time to ask why I wear scarves (and usually marvel that I manage to find one to match every outfit.) When I tell them about alopecia and how I live with it, they're not sympathetic at all -- rather, they all have unanimously said that being bald becomes me -- and that they probably wouldn't recognize me if I came in tomorrow with a head of hair. It's rare that I get a compliment for being bald, but I think I could get used to this.

Another guest this morning spent 30 minutes talking to me about how he chose to be bald when his hair started falling out (MPB, not AA), but quite frankly said he wished he could be bald AND be as good-looking as I am, LOL. He also said quite bluntly that I had the personality to go around being bald and look comfortable doing it. We exchanged skin care tips and places to get scarves and bandanas, and I even showed him how to tie his in a knot like I wear mine. A little feminine, maybe, but this guy is a 47-year-old biker who looked like he was pretty comfortable in his manly man-ness.

It always puts a smile on my face when I get the chance to bring awareness and clarity to someone who didn't have it before; it brightens my day even more to see that people -- total strangers -- actually find me to be a beautiful person regardless of whether or not I have hair on my head.

I hope my day-brightener puts a smile on your face today and makes your day a little brighter too!

trying to wind down and...

I was randomly surfing the net, tweeting and playing Mafia Wars on Facebook like I usually do and checking my many email accounts (and WHY do I have so many of those???) and I came across my girl panuelo's blog (panuelogirl.blogspot.com) and I have to say, I love her bandanas. I personally right now am wearing the long wrap scarves -- they come in a rainbow of colors and I have them to match practically every outfit that I own. I have noticed, though, that recently I have not been able to find them in the colors that I need. So I'm going to have to go to Hancock Fabrics or Jo-Ann etc. or something and see if 1) they have scarves in the material that I want, and 2) if they have the colors that I'm looking for (really, who actively looks for turquoise, tangerine, olive green, kelly green, silver, and gold??)

Right now I've put the wig search on hiatus -- I just don't have the money to be shopping for one right now. Also, I'm looking into maybe getting a lace wig, but nobody here in Nashville sells them. I wish someone could help me with that search -- or maybe I'll just learn how to make my own. Then I can do the style I want in the color I want and make it as light and airy as if it were my own hair. There's an idea....