ALOPECIA
Welcome to my secret world
I'll show you if you ask
But be aware you're looking at
My life behind my mask.
But consider while you read this
As it will help you see
That I wear the mask
It doesn't wear me.
I sail a sea of loneliness
Lost in my despair
Knowing my affliction
Will always make them stare
I quietly beseech them
With my eyes cast down in shame
To remember how I was once
Before this dis-ease came
Remember how my laughter rang so bright and true
How easily I cheered you, when you were feeling blue
You sought the gentle touch, of my hand upon your brow
That was then, yes, that was then, and, well....this is now
My god, how this has changed me
This bitter pill of gene and fate
It's brought me to my knees
And filled me up with hate
Now all I look is inward, my one and only goal
To ride the waves that take me to
The distant waters of my soul.
GET THE (DRY) FACTS ABOUT ALOPECIA!!!!
The following links will take you to the world of alopecia.
They will describe what it is, what it is not, and how no one knows
how you get it or how to cure it. Very dry semi-technical stuff
that we really do have to know, but that doesn't
even come close to saying what it REALLY is to those of us
who have it. Please Proceed:
National Alopecia Areata Foundation (NAAF)
Frequently Asked Questions
Understanding & Coping
For Better or Worse
The sentiments poured forth here are MY opinions and mine alone.
Each and every one of us deals with this heartbreaking
affliction in our own way. I just got so tired of reading
about how much this ugly monster makes you "grow", how much you
"learn from this experience" and how it makes us
"stronger and more compassionate people". The truth is that
all of these things ARE true, but I have never once read
about the gut wrenching agony of facing youself
in the mirror every morning, of not
recognizing your "self", your feelings. Being afraid
and ashamed to see people that you knew before this terrible
thing happened to you. It is such an intensely private
pain that you can't even discuss it with other people.
I was never lucky enough to live where medical attention
was readily available (I travelled thousands of miles to see
specialists), I lived where a simple thing like buying a hairpiece
literally couldn't be done. I spent the first year buying one
nightmare wig after another through the mail, then had to
(again) travel thousands of miles of try to get a custom fit one.
I was in an isolated area so support groups weren't heard of,
and when I tried to start one I got no response. I was devastated.
That is a word that you hear over and over again.
Devastation. It devastates your entire life. You don't think,
act or feel the same. No one thinks, acts or feels the same about YOU.
A smoldering anger begins to build at the shear horror of it all,
but, in the end, there is nothing you can do. There is nowhere to turn, no one to talk to about it, my doctor had NO resource material and I didn't hear about the NAAF until a year ago. You have awakened to a nightmare. So, you put
on your mask every single day and be the best you can
for your husband, family, friends, showing everyone,
everyday how well you are coping, aren't you strong, aren't
you above it all. What else really CAN you do? But it is always there, right beneath the surface,
the fear and agonizing shame, the despair and total inability to do anything to help yourself. Our society is so rigid in what
it perceives as "beauty". You don't even think about any of that
until your beauty is robbed from you. I lost all
of my hair on my entire body in a two week span of time.
I honestly thought it was a bad dream. I couldn't deal
with masses of hair on the pillow every morning so I went into
complete denial. My husband was away when this happened. He left
a perfectly normal looking wife and 3 weeks later literally
came home to a freak. I will tell you something,
if you lose your marriage it won't be right away.
Most long time husbands (or those of any note, anyway)
are sensitive enough to stick with you and just BE there for you.
No, it won't be the hair lose. It will be the
insidious depression that the hair lose causes. The gradual
feelings of self hate, the erosion of the fundamental YOU.
It will be the depression that causes the problems.
So the next time you meet someone with Alopecia and see their
wide smile and the confident set of their shoulders, the calm way they
approach each and every one of you,
remember this story. Know what is happening, just beneath the skin
of this very fragile person. But also know that I wear the mask, it doesn't wear me.
If you suffer from Alopecia, in any form, please
contact me.
My heart is always open.
You are visitor #
since July 28, 1998
Please, Please hit the "back" button at the top of the page and sign my guestbook. I want to know that you were here.
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