Alopecia World
Where acceptance is all there is!
Polyana Positive gets Punched!
This stuff sucks. There, I said it. That's how I feel today.
My whole life I've been a self-proclaimed Polyana Positive. I'm pretty much CHOOSE to put positive spin on everything. It's my nature but it's also a choice. This ability has carried me through many challenges growing up. You know, really hard stuff that takes years of counseling to clear up. And I still look on the bright side. I am a mentally and emotionally healthy, stable, strong person. I've done lots of healing work that I think is really helping me deal with this. So, because I counting my blessings, stay positive and look on the bright side, I was a little surprised to find that deep inside I have this welling sadness about this whole damn thing. I decided to blog about it because I AM a positive, strong person. I know that this disease is going to do amazing things for making me strong, accepting and loving. But I want to be honest about how hard it is, even when my nature is to see life through a rose colored filter.
Bleh
So, here's the reality. I look at my thinning hair in the mirror at least 7,000 times a day. I pull up the little strands and let them stand up on their own. Then, with my wezzy little hair sticking out, I make really ugly faces at myself in the mirror! It makes me laugh and not take myself so seriously, so I guess I find that therapeutic. Then I just look at myself and say, "I'm going F*in' bald!" I constantly think about just getting rid of this nasty crap on my head and these icky yicky stringy sucky extensions! Ugh. These days I feel really ugly.
Yikes
While shopping around for my next hair piece the consultants have all said, "So, you've noticed you're thinning?" And they are referring to my extensions! Then they rummage around my head and realize what a miracle my hairdresser has done to create "hair." Even my bangs are teeny, tiny extensions! I don't feel emotionally ready for a full wig so I've decided to go with an integration piece made of cyberhair (like Amy's Presence but not a full wig). It will be integrated and attached for 4-6 weeks at a time. I've told myself I'm trying a different kind of
extension...more of a weave-style to get more fullness. That just shows me I haven't really fully accepted my alopeica.So. I guess that's where I'm at.
As excited as I am to move on, I'm also afraid my hair is going to look horrible, behave poorly in intimate situations, or that my natural hair is so thin it won't stay pulled through the netting then, uh-oh, I'll look like I have a cheap holey wig! Wow. Now that would suck! (Listen to all that fear, fear, fear.) These in-between times and the unknowing is hard. Ah ha! I've found the lesson. What do we ever really know? Life is all about the unknowing and being ok with the unknowing. Roll with the punches. Have a little faith! Joyfully leap into the unknown. Boldy go where no man...Ok. I'll stop there.
Yay
I've been so inspired by the stories of everyone on this site...those who are honest about their pain, disclose their fears and celebrate their victories! Because of all of you I can hold a vision of myself in the future when I am through this stage. Perhaps I'll be the cool chick who works out like crazy at the gym, pops her vaccum wig on and is out the door! Maybe I'll be the playful one who changes up her styles and colors. Oh, how I'd love to be the confident one who has a beautiful smooth head and a sparkle in her eye. But today I'm a bit of the confused one. Confident and gracious one moment, sad and scared the next. But I know it will pass because so many people here are paving the way, providing strength, role modeling and most of all, inspiration! Thanks to everyone here.
I hope my sharing my ups and downs it helpful to others as well.
My whole life I've been a self-proclaimed Polyana Positive. I'm pretty much CHOOSE to put positive spin on everything. It's my nature but it's also a choice. This ability has carried me through many challenges growing up. You know, really hard stuff that takes years of counseling to clear up. And I still look on the bright side. I am a mentally and emotionally healthy, stable, strong person. I've done lots of healing work that I think is really helping me deal with this. So, because I counting my blessings, stay positive and look on the bright side, I was a little surprised to find that deep inside I have this welling sadness about this whole damn thing. I decided to blog about it because I AM a positive, strong person. I know that this disease is going to do amazing things for making me strong, accepting and loving. But I want to be honest about how hard it is, even when my nature is to see life through a rose colored filter.
Bleh
So, here's the reality. I look at my thinning hair in the mirror at least 7,000 times a day. I pull up the little strands and let them stand up on their own. Then, with my wezzy little hair sticking out, I make really ugly faces at myself in the mirror! It makes me laugh and not take myself so seriously, so I guess I find that therapeutic. Then I just look at myself and say, "I'm going F*in' bald!" I constantly think about just getting rid of this nasty crap on my head and these icky yicky stringy sucky extensions! Ugh. These days I feel really ugly.
Yikes
While shopping around for my next hair piece the consultants have all said, "So, you've noticed you're thinning?" And they are referring to my extensions! Then they rummage around my head and realize what a miracle my hairdresser has done to create "hair." Even my bangs are teeny, tiny extensions! I don't feel emotionally ready for a full wig so I've decided to go with an integration piece made of cyberhair (like Amy's Presence but not a full wig). It will be integrated and attached for 4-6 weeks at a time. I've told myself I'm trying a different kind of
extension...more of a weave-style to get more fullness. That just shows me I haven't really fully accepted my alopeica.So. I guess that's where I'm at.
As excited as I am to move on, I'm also afraid my hair is going to look horrible, behave poorly in intimate situations, or that my natural hair is so thin it won't stay pulled through the netting then, uh-oh, I'll look like I have a cheap holey wig! Wow. Now that would suck! (Listen to all that fear, fear, fear.) These in-between times and the unknowing is hard. Ah ha! I've found the lesson. What do we ever really know? Life is all about the unknowing and being ok with the unknowing. Roll with the punches. Have a little faith! Joyfully leap into the unknown. Boldy go where no man...Ok. I'll stop there.
Yay
I've been so inspired by the stories of everyone on this site...those who are honest about their pain, disclose their fears and celebrate their victories! Because of all of you I can hold a vision of myself in the future when I am through this stage. Perhaps I'll be the cool chick who works out like crazy at the gym, pops her vaccum wig on and is out the door! Maybe I'll be the playful one who changes up her styles and colors. Oh, how I'd love to be the confident one who has a beautiful smooth head and a sparkle in her eye. But today I'm a bit of the confused one. Confident and gracious one moment, sad and scared the next. But I know it will pass because so many people here are paving the way, providing strength, role modeling and most of all, inspiration! Thanks to everyone here.
I hope my sharing my ups and downs it helpful to others as well.
Comment
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Comment by BTB (John) on March 7, 2012 at 5:40am
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Good comments everyone valid and what one expects to experience with Alopecia, pretty impressive and so recognizable.
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Comment by Melissa Harris on December 7, 2009 at 11:54pm
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Don awesome poem! Thanks for sharing! Alicia, thanks for the post! There are others out here dealing with the same ups and downs of this just like you! I'm so glad that we can all share that here, wish we could all get together and just laugh sometimes! No one can relate like we do! Please keep blogging and keep the faith. Life is still good. There are a lot of wonderful things that we haven't experienced yet with or without hair! Melissa :)
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Comment by Alicia Duncan on December 7, 2009 at 5:23pm
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Mike- you are an amazing person. You've really figured out boundaries, self-esteem and self worth at a very young age! It took me *cough* years to figure some of that out and I still haven't got it together. Someday I'll grow up and be just like you! :)
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Mike, Brethren souls are we. Anger has always been my backup emotion. I have embraced it with the understanding that it can be a vital force for moving me through tough stuff without giving up. Anger keeps me moving! ("Oh yeah? Well...watch THIS!"). Now I'm wondering what the effects of anger are on myself. Who really feels the full force of my anger? Usually just me, I think. I mean, when I'm in an angry place, it's really just me that feels crappy. Then crappier because I've just pushed people away. I'm curious to move into a softer phase of my life. Not so driven. Not so angry. Not so protected. What would it feel like to feel? What would it feel like to be soft and open. What might I attract then? I'm reading a book about Emotional Unavailability. It's basically a nice little book that reminds me that we are all Damaged Goods in some way or another. If we can see beyond that in ourselves first, we open up to a new layer life has to offer. Ah. Late night ramblings...regardless, I think I feel similar to you. :-) People on AW are soooo DEEP and real. It's cool.
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Comment by brenda kay on December 3, 2009 at 10:00pm
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i can so relate with you. i am a hairdresser who went bald last march. people think i am coping wonderfully. i have been told i have made lemons into lemonade......screw them...they have hair and i wear wigs. i can't feel the wind blow my hair. i can't look at myself in the morning mirrow without seeing a freak of nature. BUT... each morning, i put on my wig, paste on my lashes, and trace on my brows and face the world with a painted on smile. Sometimes i can even fool myself into thinking i am happy.
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Comment by linda carraway on December 3, 2009 at 5:19pm
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The poem was awesome it says everything alot of us are feeling.I would love to see it reprinted to let the world know how this is affecting us. Maybe you could send it to OPRAH and they would do a story in the magazine,now that would give this the exposure we need to get the word out to the people out there that think they're alone. I'm not hiding it anymore,shaved and happy !!!!!!!!!
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Comment by Mallory Crowner on December 3, 2009 at 3:23pm
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Alicia...no matter what, keep your chin up! ;o) Alopecia sure is a roller coaster of emotions. Always. I have my days when I forget about it and then I see a really cute hairstyle and wish for my hair to be back. I have never worn a wig, I did try for a couple of hours, but it just isn't me. I've never been in to makeup or anything so to me it's just too much maintenance. Thank you for sharing your thoughts as we all can relate on so many levels!!
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Dom
Are you the author of this poem? It is absolutely beautiful. Thank you for posting. I think I might print a copy for my office wall if you don't mind. Thank you for sharing!!!
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Hi Lisa, I've read so many stories that remind me of your own. It makes my heart hurt for you! How difficult it must be to have a full head, gone, patches, hair again!, gone again... So frustrating. I'm what I would classify a "Slow Diffuser" at this point. Regardless, the desire to be in one known place is just human nature, I suppose. "I'm here, I get how this works, let's leave it this way!" Now, if Alopeica would just cooperate. hee hee! :) I hope you have a great day, Lisa. Thanks for the comment.
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Comment by Lisa Santer on December 3, 2009 at 8:12am
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Hi Alicia. So glad you posted this. I just did the math & realized I've had some version of alopecia for 32 years. It's ranged from 2 holes to AT to AU to full regrowth, repeatedly. Your post reminded me of how hard the in-between times have been, & the immense sense of relief I've had after cutting off the patches. I love the sense of freedom in just being me, as I am. Scarves, hats, and bareheaded work for my life. And, after many consecutive years of no scalp hair when I dubbed myself "cleanhead", I admit I am not happy to have some patches of hair & holey eyebrows grow this year. Honestly, at this point I wish they'd all fall out again.
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