Alopecia World
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Internal Dialog
I do understand..cause when I'm not thinking and walk by a mirror...I still after 30 years get a gasp..a shock and revolt feeling like a freak too!
Even though I had hair long ago and the last time was when I was 14 years old...I still remember the feeling..sitting in a car or bus, just with my head near the window..enjoying the wind blow in my face and through my long beautiful hair.
Just today..i looked in the mirror and thought..where does all that positive energy come from, which keeps me afloat.Then I wonder, what in the heavens name do I still continue to feel lesser and a freak of nature.
I'm going along feeling fine..and then something takes over..and I feel silent..internally sad, hopeless.
It's not my fault..it's not my fault....I have no control of what's happening to my body...yet the reaction from most, has questions and some how blame.
Well...you should know how...what ...why and surely?
Have you been here, have been there...have you done this, have you done that...have you tried this, have you tried that?
NO NO NO and NO AGAIN!
Deeerrrr!
It never, never ends...it's a minute around the corner...and when you least expect it...someone comes along and has to remind us, of what we already know.
Like "SMILE YOUR ON CANDID CAMERA"
"Do you have the answers..do you have the "SOLUTION/ OR SOLUTION" Do you have all the Answers?
Becuse if you do..I would like in on this Magic Potion..Miracle and Magical New Treatment!
IT'S IMMUNE......................................................................................IMMUNE!
It Just baffles me..that after all these years..it still feels so uncomfortable...and yet we learn...or I should say, have to accept and learn to live with our image of being different.
Although the "WISDOM" and the "STRENGTH"..."ENDURANCE" and "OUR COURAGE" is REMARKABLE.
We have learned so much that others shall never know.
Not disregarding any other ailment or organization...for we who suffer, all know too well...the triumph of over coming pain..over coming harship and adversity.
But you know what...as I write...I say to myself...who am I to complain...there are people who have been in accidents...who died and the others who survived some drastic event, who are disfigured...or burned beyond recognition.
This says for me...."to behave myslef".
To Wake up...stand tall...be strong and face this life with encouragement and joy!
Our Human Right Is To Be and Live In Freedom...Comfort.
TO RETAIN OUR SELF WORTH AND DIGNITY!
Never letting Society bring us Down or DESTROY OUR SELF ESTEEM!
I know..that we have all felt this way...and I know we have all been down this road of dispair and sadness.
Although, we are all alone in our journey of self...and this is why we feel so alone and helpless.
Just as those who had some other trauma.
Besides...I think we don't get recognition and understanding as those who had some terrible trauma.
They get sympathy for their suffering.
Yet our internal daily suffering is an on going emotion, of harmonizing combinations of grief, anguish and to the point of self loathing at times.
Simply because we are so misunderstood...so ignored and unexcepted.
Blah Blah Blah...and that's what people who have to hear our pain think to most part..."here they go again"
Lack of knowledge...information and understanding.
Education...Education...Education!
Yes..I know, some will say..Education does not help in our situation...and you know what, that may very well be the case.
I TAKE A BOW!
MiNA
Even though I had hair long ago and the last time was when I was 14 years old...I still remember the feeling..sitting in a car or bus, just with my head near the window..enjoying the wind blow in my face and through my long beautiful hair.
Just today..i looked in the mirror and thought..where does all that positive energy come from, which keeps me afloat.Then I wonder, what in the heavens name do I still continue to feel lesser and a freak of nature.
I'm going along feeling fine..and then something takes over..and I feel silent..internally sad, hopeless.
It's not my fault..it's not my fault....I have no control of what's happening to my body...yet the reaction from most, has questions and some how blame.
Well...you should know how...what ...why and surely?
Have you been here, have been there...have you done this, have you done that...have you tried this, have you tried that?
NO NO NO and NO AGAIN!
Deeerrrr!
It never, never ends...it's a minute around the corner...and when you least expect it...someone comes along and has to remind us, of what we already know.
Like "SMILE YOUR ON CANDID CAMERA"
"Do you have the answers..do you have the "SOLUTION/ OR SOLUTION" Do you have all the Answers?
Becuse if you do..I would like in on this Magic Potion..Miracle and Magical New Treatment!
IT'S IMMUNE......................................................................................IMMUNE!
It Just baffles me..that after all these years..it still feels so uncomfortable...and yet we learn...or I should say, have to accept and learn to live with our image of being different.
Although the "WISDOM" and the "STRENGTH"..."ENDURANCE" and "OUR COURAGE" is REMARKABLE.
We have learned so much that others shall never know.
Not disregarding any other ailment or organization...for we who suffer, all know too well...the triumph of over coming pain..over coming harship and adversity.
But you know what...as I write...I say to myself...who am I to complain...there are people who have been in accidents...who died and the others who survived some drastic event, who are disfigured...or burned beyond recognition.
This says for me...."to behave myslef".
To Wake up...stand tall...be strong and face this life with encouragement and joy!
Our Human Right Is To Be and Live In Freedom...Comfort.
TO RETAIN OUR SELF WORTH AND DIGNITY!
Never letting Society bring us Down or DESTROY OUR SELF ESTEEM!
I know..that we have all felt this way...and I know we have all been down this road of dispair and sadness.
Although, we are all alone in our journey of self...and this is why we feel so alone and helpless.
Just as those who had some other trauma.
Besides...I think we don't get recognition and understanding as those who had some terrible trauma.
They get sympathy for their suffering.
Yet our internal daily suffering is an on going emotion, of harmonizing combinations of grief, anguish and to the point of self loathing at times.
Simply because we are so misunderstood...so ignored and unexcepted.
Blah Blah Blah...and that's what people who have to hear our pain think to most part..."here they go again"
Lack of knowledge...information and understanding.
Education...Education...Education!
Yes..I know, some will say..Education does not help in our situation...and you know what, that may very well be the case.
I TAKE A BOW!
MiNA
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Comment by Alexandra on June 18, 2009 at 10:42pm
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Mina,
I was in the bookstore today reading a book about Obsessive Compulsive Disorder, and there was an analogy that actually made a lot of sense to me - and can be applied to any problem in life. The analogy was basically saying to pretend you're standing in the ocean and a huge wave is heading right towards you. It's big and you're too far out to turn around and swim back to shore. Instead of clenching your toes into the sand and thinking too hard, you should relax and let the wave crash over you and pick you up. You will ultimately float to the surface of the wave's water and be carried back to shore.
The book then elaborated by saying that by overthinking things and pushing the problem away rather than confronting it, the problem is not going to go away in your head. It will only be supressed and could very well resurface again in life and prevent you from growing and finding inner peace. But if we ride through our problems and allow ourselves to experience the emotions and feelings we would normally feel without pushing them away, we can build our true inner strength and acceptance and ultimately feel much better.
Now as one alopecian to another, I completely understand how you feel. Just like you said, I know how it feels to feel like a freak, to feel overwhelmed, and to just to feel sad even though we know it's not our fault. I'm still trying to allow myself to "float in the wave", so I know how hard that is too. It's like we're expected to have this immense inner strength and think of alopecia as a silly little annoyance, when it feels like so much more to those of us going through it. It may not be a deadly disease or a horrible disfiguration, but it doesn't have to be for it to still upset us. Some people don't understand how traumatizing alopecia can really be.
But we're not freaks, we're not inferior, we're not any less attractive or desireable or worthwhile than people who have full heads of hair. It took me a long time to realize that, but I finally do.
If ever you need someone to talk to, you have a friend in me. =)
Take care,
Alexandra
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Comment by Tallgirl on June 18, 2009 at 11:10pm
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At least we have this site. Imagine what other people with other conditions go through. As to the wave idea, I tend to use things as info for paintings, writing, or conversation for counselors. ALL of our feeling make for good artistic expression, especially when we have our work ambiguous enough that the emotions can relate to several conditions of life (more art buyers, too). Spiff up a talent, and use the ride of alopecia to give yourself a voice for all those emotions.
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Your prose is also art. Create some posters or calligraphy, covers for journals, etc. Even greeting cards.
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Comment by meg on July 9, 2009 at 9:08am
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Love this idea! A series of post cards or cards or even better a fold out series of unmasking starting with full pic with wig then slowly taking off make-up etc to wig off!
By the way, for all of us out there just found this out after speaking with an old friend from Harvard who is an immunologist... the only option for complete restoration of hair, since Alopecia is an autoimmune disorder, is to undergo a bone marrow transplant using an identical twin's bone marrow and then be on anti-rejection medication (steroids) for the remainder of one's life. I'd rather be bald!!!
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Comment by MiNAH on July 26, 2009 at 1:09am
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I try real hard to share the adversity and understanding I have, for those who share the same condition as me...Alopecia!
I am proud to walk with my beautiful sleek look.
My son loves it!
HOWEVER...YES...THERE ARE THOSE WHO HAVE THEIR OPINIONS, JUDGEMENTS, AND PERCEPTIONS ON HOW WE MUST ACT AND FEEL.
I endeavor to help bring a compassionate understanding, of the adversity we all go through...yet the separation of different emotions always have to be evaluated.
This is why..sometimes people may misunderstand me.
I simply wish to stand as support for those who are just beginning the journey into/unto acceptance of oneself.
I try to get to the core of where all of our insecurities come from and let people know that I too have been there.
However......today I stand liberated, proud and happy to be who I am!
Here at Alopecia World we are drawing strength from one another.
We are on the same journey...and for some it has been longer than others.
Yet the same adversity..hardship..sadness and at times, self loathing and feelings not understood.
"Who can understand us..unless they have walked in our shoes".
Only few, will ever have a sense of deep empathy.
Yes..the questions, blame, opinion, perception, judgment and lack of understanding is one to be overcome.
Stand up anyone who feels grief...sadness and lack of self worth....walk over to the mirror...and look at your beautiful self.
See how special you are..how wonderful you are!
Now...tell yourself that internally, when you lay your head on that pillow & close your eyes to sleep.
This is your life...your journey...stand proud about all that makes you that unique person.
Draw from all your great qualities.
Don't live with the pain that others put out...don't take it on board!
Try real hard to accept yourself.
Imagine that you are powerful, strong and confident.
Make it your priority to grow....leaving all the negative behind.
Unleash and embark on a new path, a new journey into self esteem and awareness.
It's your "HUMAN RIGHT" to be happy.
"DO NOT" LET ANYONE ROB YOU, OF THE GIFTS OF YOUR EMPOWERMENT!
If anyone throws out negative energy..."incuding yourself"...throw it right back and discard that baggage
I still get it every day..and wish I had dumped that negative reaction from family or friends years earlier.
Why carry all those burdens along with us into the future.
Why not enjoy who we are and embrace ourself...right now!
I can't go back...although everyone here can grow stronger in their future, with words of Wisdom from Alopecia World...and all the people who care about themself & eachother.
So even when that computer shuts down..and we are not at base...remember we have eachother at heart...as we are all walking the same walk.
This comment was written to a young lady who had me in tears...& this was my response to her.
yet for the rest..some words have been changed to share my thoughts with everyone here at Alopecia World..who may be struggling with self acceptance...self esteem and self worth.
Fighting that daily battle!
Give your self a break and know you are worth it!
"WORTH WHAT"
To be free, comfortable, confident, happy and thriving in self acceptance.
Happy to Look at your own Image and love it!
"LOVE YOURSELF"
Exposure is the rule to complete awarness and joy.
KNOWING YOURSELF, IS A NEW AWAKENING & REBIRTH OF THE NEW YOU!
I'm here and ready to interact with awakening the minds of our fellow human beings, who lack the knowledge , understanding...empathy and compassion for people with Alopecia.I have ample confidence to stand side by side and help the world accept...and dissrobe all the negative perceptions about our facade...cause it's so hard for them to see the "man...inside the man"
the "woman...inside the woman
MiNA
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