Certainty, Uncertainty, and Alopecia

Uncertainty! If there is anything in life that is certain, it is without an ounce of doubt...uncertainty!   Most of us don't realize uncetainty really exists as children, unless something considerable is happening in our lives that makes it so that we know it's there. In the case of my daughter it has been something she has known well since birth. Excitement of my surprise pregnancy (I was not supposed to have any other children) quickly turned to worry.  After the sixth month of pregnancy during a prenatal ultrasound, I received the sad news about my daughter's kidney condition (stage 4). I was devastated. As a parent, I just didn't understand how this happened after taking all those precautionary measures to be certain that everything was going to be okay.

Fast forward almost 5 years later, complications stemming from the kidney issues, four specialists, hundreds of doctor visits,  countless CT's, ultrasounds, labs, it seemed we had reached a point where things were somewhat looking up. She was a happy little girl despite the above mentioned, and was about to start Kindergarten. I remember it like if it were yesterday!  It was the morning of the 30th of June, 2014.  My five year old baby girl woke up with a about a little less than a quarter sized bit of hair missing. It was right on the hairline at the top center of her forehead and at the moment I honestly didn’t think much of it. Although I worried for a second, I thought maybe somehow she snagged that part of her hair and accidentally pulled it out. I mean after all, she was just five years old. My mother picked her up from pre-school the following afternoon and she pointed out yet a second “spot” the size of a dime right next to the one from the morning before.  By the time we got in to the specialist three weeks later she had lost the entire left side. Needless to say, I was terrified. I couldn’t sleep and worried constantly and being that she had already experienced so many other medical issues at such a young age.... I lost it, and I was angry. 

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Every shower I panicked. Every time I brushed her hair in the morning I cried. I thought that by brushing it I was pulling it out and making it worse. That feeling when you see it coming all out in clumps is indescribable. I stopped washing her hair every day and would braid in a way it wouldn’t come out so I wouldn’t have to brush it again until her next shower. I remember telling her not to turn around while I was brushing, I think more because I figured that on top of seeing that much hair fall out, my tears would make her worry even more.

The specialist gave her the diagnosis of alopecia. Alopecia means hair loss.  Although at that time she told me she didn't think she would loose all her hair, she explained that the loss could either stop or continue and lo and behold uncertainty was the only thing that was certain about it. I was heartbroken. She, until this day , has what we call "episodes" where she suddenly becomes ill, she gets a fever and is somewhat lethargic and then it starts..her hair just starts falling out..IN CLUMPS and its SCARY! Doctors still don't understand why it happens, sometimes even if she gets a cold or a stomach bug, it triggers it. Although alopecia is considered an auto immune disease the correlation between these triggers and the loss is something that doctors don't understand.  They do believe there is another auto immune link due to recent lab results but it hasn't quite been pin pointed yet.

Being a child and facing this "adult" problem has taken an emotional toll on her. She's always owned a large amount of hair clips, bows and flowers that she could no longer wear. She is the ultimate girlie girl and her hair was her pride and joy. Decorating her long beautiful dark brown hair with her bows and clips was part of her daily routine. She's told me many times she wishes there was a "hair fairy" that would magically bring her hair back. Or that every time I applied her medication, "poof" her hair would be back the next day.  For lack of better words..it sucks! (Medication consists of topical steroids, it is a treatment but guarantees no results) 

Sometimes I think that I don't fear so much the fact that she has alopecia, but the fact that we live in this cruel, hateful, judgmental world.  I hear horror stories of children and adults with hair loss that are severely bullied, made fun of and treated as if they weren't even humans. Did you know that most movie casting agencies when looking for "freaks" especifically mention alopecia amongst other things? The first time I read that I cried my face off! I hear of those that have suffered for a long time, that have become depressed due to not only the loss of something but the nasty comments.  And even those that have "accepted" it still have many days where they feel sad and angry. 

Furthermore, I realize we live in a time in which we are forced to feel that we must apologize for our feelings. I can't even count how many times I have been told "well at least it's not cancer" or "it's just hair". Now, do I get what they are saying? YES! I KNOW that IT IS NOT CANCER and sure "it's just hair" if you want to put it that way (insert sarcasm). It's the common statement that I'm sure many people hear when going through anything! If you want to get technical sure anything at any point could be worse outside of death. It's as if people assume that because you are going through a traumatic experience you have suddenly lost the ability to appreciate the good things and that because it is not as traumatic as they may assume it to be that you have zero right to feel a certain way; that you need a reminder of what is good so you can "snap out of it" and "get over it" because well....it could be worse, so truly it's not bad! Furthermore, I get the "hair doesn't matter, inner beauty is all that matters"....and again I think....of course 100%...but does that mean that she also forfeits the right to be beautiful and her beauty is only what is in the interior not on the exterior due to her lack of hair!?? NO!!! And I would hate for her to live her life thinking that others think "well at least she has inner beauty"!!! When I look at her and I compliment everything. Her eyes, her smile, her face!....she IS beautiful.

Since that day in June,  her hair loss became quiet extensive. She has been 90% bald THREE times since that date. It grows up to a certain point, then the triggers happen and its gone. The uncertainty of it is what makes it the hardest to cope with.

My mission is to remind her daily of the beauty inside of her. I remind her that she is not her hair.   Although it is a part of her and in a way a person experiences a sense of loss I explained to her that although it is something that hurts; she is so much more than that. She is kind, she is loving, she is smart and strong beyond words.I am a strong believer that the way I built up her self-esteem prior to this diagnosis is what helped it not explode into something a lot more devastating. “You are beautiful”, has been a daily affirmation since the day she was born. She knows she is “different” and she does get down about it at times, and will make comments like “I’m not normal” or “I look like an old lady” or “I’m going to look ugly bald” even going as far as requesting that the instant she goes bald that I pull her out of school, but I explain to her that we all are different in some way or another.  

I do believe as a little girl/female it is less socially acceptable to not have hair, but in no way undermines the emotional and social effect on a little boy/male. Alopecia is life altering and can break a person’s self esteem. The social stigma of this disease can be a very painful thing for sufferers.  This has taught me that raising awareness of this disease is imperative. Treatment options are expensive and so are wigs. Awareness can help bring donations to organizations that are helping fund research for a cure or help fund resources like providing wigs and accessories for those suffering from this incurable disease. I also believe that there is great importance in not only alopecia awareness but of acceptance awareness, kindness awareness, giving awareness and above all LOVE awareness.   We are all humans, and we are all guilty of judging somebody for something. Whether it’s something miniscule or something we may consider of immense proportions, we forget it is not our place and that we are not in their shoes. We all suffer either silently or publicly of something.   It is our duty as humans to spread the message of love and kindness. You never know what battle someone is fighting. Words of encouragement, a hug, a card, and our most valuable asset our time, offer an immeasurable amount of support to someone in need.   It is important to give of ourselves to others.

What is life without love? And what is love if you limit it? Love should be endless, unconditional and available to all of those around us. We are here for a very short amount of time, and we should all make the best of it. If our life is great, then why not do something to make someone else’s life that is not as fortunate just as great!? You deserve it, they deserve it…every single person on this earth deserves to be loved, accepted and cared for…. hair or no hair!   AND guess what?!.. Even if there is no certainty that her hair will grow back, and if it does that it will stay...there is one thing that is 100 percent, unequivocally,  unambiguously, and without ZERO percent of an ounce of doubt CERTAIN: my love! We can take comfort that of all the uncertainties in life, LOVE is something that is always CERTAIN!

Donate to naaf.org to help find a cure!