Alopecia World
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An ode to alopecia
Oh alopecia, how you do frustrate me....
I was so angry at you when you first took my hair - and I got in first and shaved what was left off before you could take it. I was especially mad at you for taking my eyelashes but I slowly adjusted. I didn't mind that you took away my body hair and relished not having to shave my legs anymore. I was actually happy when you took away the rest of my head hair because it meant I didn't have to shave it off anymore to wear my vacuum wig.
You challenged me to live as a bald woman, and I rose to the challenge. I chose to wear the wig for much of the time, but I was very open about my condition and I started to do more and more things bald - it was great for swimming or when I went to the gym and I even went skydiving bald.
The you started to give my back some of the hair you took away. Not all of it, but slowly you started to let more and more of my hair grow. It was never all over my head though and I know how fickle you can be, so I just started shaving it off again and I continued to wear my beautiful wig. I even ordered another wig so when this one needed repairs I would not be without. And even though you were giving back what I missed so much, I got mad at you again because I found it harder to be patchy than completely bald.
Now you continue to give me more and more of my hair back. What's this?! Hair on my arms? Legs? Some eyebrow hair and even some baby eyelashes.... Are you just teasing me, or are you really going to give it all back? Or are you going to be even more annoying and just give some of it back, so that I need to shave my legs again but I still can't wear mascara?
Why can't you tell me what your future plans for me are? Should I try and grow out the hair on my head right now and make my vacuum wigs fit not nearly as well during the awkward in-between stage? There is fuzz growing almost all over my head right now, and you tantalize me with the idea of what life would be like with my own hair again, but I don't know if I can trust you...you could just as easily take it all away again.
I really do hate you alopecia.
I was so angry at you when you first took my hair - and I got in first and shaved what was left off before you could take it. I was especially mad at you for taking my eyelashes but I slowly adjusted. I didn't mind that you took away my body hair and relished not having to shave my legs anymore. I was actually happy when you took away the rest of my head hair because it meant I didn't have to shave it off anymore to wear my vacuum wig.
You challenged me to live as a bald woman, and I rose to the challenge. I chose to wear the wig for much of the time, but I was very open about my condition and I started to do more and more things bald - it was great for swimming or when I went to the gym and I even went skydiving bald.
The you started to give my back some of the hair you took away. Not all of it, but slowly you started to let more and more of my hair grow. It was never all over my head though and I know how fickle you can be, so I just started shaving it off again and I continued to wear my beautiful wig. I even ordered another wig so when this one needed repairs I would not be without. And even though you were giving back what I missed so much, I got mad at you again because I found it harder to be patchy than completely bald.
Now you continue to give me more and more of my hair back. What's this?! Hair on my arms? Legs? Some eyebrow hair and even some baby eyelashes.... Are you just teasing me, or are you really going to give it all back? Or are you going to be even more annoying and just give some of it back, so that I need to shave my legs again but I still can't wear mascara?
Why can't you tell me what your future plans for me are? Should I try and grow out the hair on my head right now and make my vacuum wigs fit not nearly as well during the awkward in-between stage? There is fuzz growing almost all over my head right now, and you tantalize me with the idea of what life would be like with my own hair again, but I don't know if I can trust you...you could just as easily take it all away again.
I really do hate you alopecia.
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Comment by Mary on March 29, 2010 at 2:42pm
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Great blog, Karina! I've often felt like "talking" to my Alopecia, but never put the words down. Thanks for writing what many of us feel! Mary
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Comment by Pat Latina on March 29, 2010 at 6:45pm
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Thank you Karina!!!!! Awesome blog. Totally was eye-to-eye with you on this one.
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Comment by Petra on March 29, 2010 at 7:48pm
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Boy can I ever relate. Just recently some of my eyelashes and hair started growing back. I get excited and scared all at the same time. Will it last or will it just fall out. I stare at my eyes in the mirror counting the lashes and then poof they are gone the next day. The hair that was growing back on my head was about 1/2 inch long when I noticed it falling out again so I just shaved it off.
I hate the hoping.
Petra
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Comment by Cheryl, Co-founder on March 30, 2010 at 11:41am
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Karina, Very interesting blog. I have been growing quite a bit of hair that I just continue to shave. It is funny that I don't think of myself with hair anymore. I too do not trust any regrowth. I believe that what I have today, I may not have tomorrow. If it all grew back I would probably keep it cropped very short, at least for the for a long while ;). I don't think I would know what to do with it anymore. Being a black woman, hair can really be hard to handle and I don't think I am up to the "work".
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Comment by Clara S. on March 30, 2010 at 1:07pm
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This totally struck a chord with me because I was thinking today what will I do if my hair grew back and then dropped off again? haha :)
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Comment by Kelly D on March 30, 2010 at 6:30pm
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I really loved this blog. Thanks!
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Comment by Karina Louise on March 31, 2010 at 3:22am
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Thank you for all your comments on this, it felt so good to write this and good to have people who understand read it! As much as some people in my life care about me, none of them can quite understand this because they've never had to live through it.
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