Alopecia World
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Paradise lost
...or not. I've had alopecia for almost 20 years. Small spots mostly...the hair grew back and then some before falling out somewhere else. I was lucky, or so I thought...to have kept my hair that is...until recently when it began to fall out by the brushful. Perhaps it's a blessing in disguise.
I've been lurking the last few days. Reading your posts, your blogs, and the thoughts you chose to share. I understand the courage it takes...to refuse to let yourselves be distracted by an illness . You see, I have neurological sarcoidosis, another autoimmune disorder. The docs say the AA is not related. Guess it really doesn't matter. It is what it is.
The majority of what was once my long, thick pony tail now resides in the drains. I've plunged the shower and sink so many times that I've lost count. It's a losing battle. The hair goop, thinning hair and comb over are no longer a match for the evergrowing patch of bare skin on the side of my head. Sadly, my eyebrows and part of my beard have headed south on a sympathy strike. To add even more excitement, I found a small cousin of "Mr Soft as a baby's backside" taking up residence on the other side of my head this morning. He had his bags and looks as if he plans on staying awhile. Suppose he'll want a spot to call home. If he clears as much as his cousin, the hair will be gone from more than 1/2 of my head. I have the razor is at the ready. Somehow shaving my head seems less intrusive if it is my choice...
My only hope is that in the days to come that I may be as strong as some of the wonderful kids I've read about...and as confident as the ladies who know that true beauty lies within.
Peace, Tony
I've been lurking the last few days. Reading your posts, your blogs, and the thoughts you chose to share. I understand the courage it takes...to refuse to let yourselves be distracted by an illness . You see, I have neurological sarcoidosis, another autoimmune disorder. The docs say the AA is not related. Guess it really doesn't matter. It is what it is.
The majority of what was once my long, thick pony tail now resides in the drains. I've plunged the shower and sink so many times that I've lost count. It's a losing battle. The hair goop, thinning hair and comb over are no longer a match for the evergrowing patch of bare skin on the side of my head. Sadly, my eyebrows and part of my beard have headed south on a sympathy strike. To add even more excitement, I found a small cousin of "Mr Soft as a baby's backside" taking up residence on the other side of my head this morning. He had his bags and looks as if he plans on staying awhile. Suppose he'll want a spot to call home. If he clears as much as his cousin, the hair will be gone from more than 1/2 of my head. I have the razor is at the ready. Somehow shaving my head seems less intrusive if it is my choice...
My only hope is that in the days to come that I may be as strong as some of the wonderful kids I've read about...and as confident as the ladies who know that true beauty lies within.
Peace, Tony
Replies to This Discussion
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Permalink Reply by Mandy on
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Wow Tony, that was really nicely written. I don't really know what to say other than just keep truckin! Just wanted you to know your post was read and appreciated. ;)
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Permalink Reply by Donna Evans on
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Tony, I had my husband shave my head a couple of days ago. I never thought I'd do that let alone have my husband do it and actually let him see me looking so... hmmm, unfeminine for lack of a better word. (If that is a word!) Anyway, if you look at my page you will see how devastating this has been for me but I am finally getting over it! It's a relief not to look at that patchy mess I have been calling "my hair" for 2 years. It actually made me feel better and it was fun. I hear you about the drains! A shower full of hair every day is really depressing.
Donna
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Permalink Reply by kastababy on
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Tony, your prose is amazing!
Please believe me when I tell you that developing the confidence to go about as you are, bald or not, is a daily struggle for many of us. Self-acceptance in the face of societal ostracism for not fitting the norm is perhaps the most difficult task that any of us can face. To live with sarcoidosis in addition to AA takes perhaps greater courage than many of us here in Alopecia World even have!
Thank you very much for sharing your story with us. Just remember, we are all here for you to lend a shoulder to cry on and support for those times when you feel alone in this. Keep on posting, and I'll be sure to read it!!!
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Permalink Reply by Elizabeth on
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Tony,
I've been there. From 16 - 21 I had spots. Every time I thought it was getting better, it would get worse. But I just held onto every strand I had - you can't help it. I finally got a hair piece when I was 21, shaved what I had left and have left all types of treatment behind (well, I still get injections in my eyebrows). It takes a long time, believe me, but sometimes the less you do and sitting back to let the condition run its course can make all the difference. I'm not going to sit here and say that now I'm "totally okay with everything"! But taking control while letting go has provided me with a great deal of acceptance and peace.
Best of luck with this difficult time. And by the way, you are a beautiful writer!
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