Alopecia World
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Walking in my mothers shoes.
I happen to have a very beautiful mother. I know everyone says that but she really is unusually beautiful and ridiculously unaware of it. She has smooth dark skin with big almond shaped brown eyes, a straight small nose, a contagious white smile, great legs, dark hair and genes passed down that gave her a great shape she never had to work for. She was valedictorian when she graduated, and played pro tennis until an injury led her to start her life as I know it now. While I was growing up my brother and I always dealt with men hitting on her, which we hated. We really hated that our friends had crushes on her too. My dads friends would tell him that he is so lucky to have her. Somehow she has always looked much younger than her age. She is smart, very kind, extremely nurturing, strong willed, loyal, an optimist, humble, and seemed to have a kind of child like quality to her that you can't quite put your finger on. She loves a great party but if she had one drink she would fall over passed out. Though she is somewhat shy until you get to know her, she will never understand a wall flower when it comes to dancing. She appears to have it all.
" Can you see it?" she would ask. She was referring to the bald spot she had on the top of her scalp. We would always answer "NO!" She drove us nuts over this. It seemed like forever when she would get ready to go anywhere. Her hand held mirror helped her to see if it was covered...never to her satisfaction. She would return from the salon and complain that it never came out right. "stupid hair." she would say under her breath. "Maybe I should get a wig?" she would say happily. We shouted back "No! Why would you do that? It looks good, what is wrong with you?" When we went swimming, she would not go under the water. Why? Bald spot. Everything revolved around this spot, and her thin hair did not help the over all "mask" she was trying for. "Be careful, that is the important hair!" she said nervously as I tried to style the top of her hair. She would receive compliments all the time about how pretty she was and she would smile, blush, and say thank you as her eyes quickly darted away. She had no self esteem. Never did. She started to deal with her AA in her early 30's. We would always tell her that she worried too much about it and that no one saw it. EVER. I really didn't see it! Was it thin? Yes. Did it look like everyone else who did not have a huge wad of hair on their head like me? Yes. Did it look like she had a problem? NO. Hell no. STOP ASKING ABOUT IT. Almost seemed like she was crazy and a bit obsessive. No one saw a problem except for her.
I called her on the phone crying last October when I was diagnosed with AA at 33 years old. She said we would find a way to stop it and it would be ok. I could hear her crying and she told me she was so sorry she did this to me. WHAT??? I felt horrible. Hearing her say that was almost worse than hearing the diagnosis an hour earlier. I apologized to her over and over for never understanding her fear. The ONLY reason I see her spot now is because I have AA and I obsess as my mother did all my life. I don't know what I fear more, the actual loss of hair or the fear of feeling like she did everyday. She never had anyone to talk to about it. I have tremendous guilt over this, I feel so badly for her. I only told her that once as I was not allowed to feel badly for a healthy happy capable person such as herself.
I have AA, I am scared, I see the changes daily. But for 32 years I never ever saw her thin hair. I never saw her bald spot. I always saw this pretty lady, my mom, and I hoped that as I got older I would look just like her. When ever someone has said that I look like her, she would say, "Thank you....but I was never as pretty as she is, but thank you." That is not true. I still hope every day that I as I get older I am fortunate enough to look just like her, but more importantly, be the kind of person that she has always been. She appeared to have it all and she did. She just never knew it.
" Can you see it?" she would ask. She was referring to the bald spot she had on the top of her scalp. We would always answer "NO!" She drove us nuts over this. It seemed like forever when she would get ready to go anywhere. Her hand held mirror helped her to see if it was covered...never to her satisfaction. She would return from the salon and complain that it never came out right. "stupid hair." she would say under her breath. "Maybe I should get a wig?" she would say happily. We shouted back "No! Why would you do that? It looks good, what is wrong with you?" When we went swimming, she would not go under the water. Why? Bald spot. Everything revolved around this spot, and her thin hair did not help the over all "mask" she was trying for. "Be careful, that is the important hair!" she said nervously as I tried to style the top of her hair. She would receive compliments all the time about how pretty she was and she would smile, blush, and say thank you as her eyes quickly darted away. She had no self esteem. Never did. She started to deal with her AA in her early 30's. We would always tell her that she worried too much about it and that no one saw it. EVER. I really didn't see it! Was it thin? Yes. Did it look like everyone else who did not have a huge wad of hair on their head like me? Yes. Did it look like she had a problem? NO. Hell no. STOP ASKING ABOUT IT. Almost seemed like she was crazy and a bit obsessive. No one saw a problem except for her.
I called her on the phone crying last October when I was diagnosed with AA at 33 years old. She said we would find a way to stop it and it would be ok. I could hear her crying and she told me she was so sorry she did this to me. WHAT??? I felt horrible. Hearing her say that was almost worse than hearing the diagnosis an hour earlier. I apologized to her over and over for never understanding her fear. The ONLY reason I see her spot now is because I have AA and I obsess as my mother did all my life. I don't know what I fear more, the actual loss of hair or the fear of feeling like she did everyday. She never had anyone to talk to about it. I have tremendous guilt over this, I feel so badly for her. I only told her that once as I was not allowed to feel badly for a healthy happy capable person such as herself.
I have AA, I am scared, I see the changes daily. But for 32 years I never ever saw her thin hair. I never saw her bald spot. I always saw this pretty lady, my mom, and I hoped that as I got older I would look just like her. When ever someone has said that I look like her, she would say, "Thank you....but I was never as pretty as she is, but thank you." That is not true. I still hope every day that I as I get older I am fortunate enough to look just like her, but more importantly, be the kind of person that she has always been. She appeared to have it all and she did. She just never knew it.
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Comment by Melissa Harris on August 21, 2008 at 11:54am
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Wow Lisa, thanks for sharing that story. Maybe it helps that you and your mom can at least relate to what is happening to you both. My sister and the rest of my family is horrified, they dont know what to say to me at all. We are all beautiful, it's just so hard to live in this society with all of the pressures to "look good". I have never noticed so many bald people now, it's crazy. Mostly men though; A few women with some thinning stand out to me more now too. Even noticed the gymnastics girl that took gold and silver that was blond, she had some thinning on the sides of her hair. I probably would not have even noticed if it wasn't for my situation! I'm glad that you at least have your mom to talk to. I'm all the way in the sticks where no one seems to even know what AA is. The wig places here are the worst so I'm really scared if I need one someday, where am I gonna go?? I have seen so many websites for wigs, but everyone says that you can get ripped off quickly. I don't know what to do, so I'm sitting here with a baseball cap on my head, dreading the next time that I take a shower. It's so painful!!! Sometimes I cant take it anymore!! It's like a curse!! Well, hate to sound so miserable, but right know I'm scared to death to to bald. Hope you are ok Lisa, I know life goes on and we are not dying, but this is the hardest thing I've had to endure in my lifetime!! Talk to you soon! Melissa
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Comment by Stacey on August 22, 2008 at 4:08am
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I have an aunty completely hair-free, who has sported a wig since she was a child. Whan my hair started becoming a bit patchy as a kid, I was re-introduced to my bald aunt - I had no idea it was a wig. I was kinda horrified that I might 'go bald' as I was only 8. My hair quickly re-grew, only now and then losing a small patch. That I could deal with.
Since I had my son 15 months ago, my hair has slowly been falling out, and not re-growing. Where it does re-grow, it quickly disappears again.
I have attached a pic from the first weekend in May, where it is receded, but the bare patches on top were still able to be concealed with a bit of back-combing and hairspray.
At that point my husband suggested a buy a wig, and have it there for when I was havinga bad hair day. I agreed, as it was getting me down looking in the mirror at my thinning mop.
It took me 4 weeks to pluck up courage, select, order, fit and trim my new hair. It was a low point, I have to admit, but I had no idea how much better I would feel once I wore it.
In those 4 weeks of 'mental preparation' I decided I would wear it for 2 weeks, to give it a real go, then I would evaluate the results - if I felt happier - it stays, if I felt worse, it stays in the cupboard.
I have not left the house without my wig since. I had all sorts of prople commenting on how great my new 'hair style' looked. Only a few colleagues, plus select friends and family knew I was getting it.
I have lost so much of the hair on top of my head, I could not go without it now. It was a very timely decision.
It has been about 3 months now. I am happy when I look in the mirror after my hair is 'done' now rather than bobbing down and asking my husband 'Can you still see it?'.
I was so sick of concealing with my 'comb-over', and now I conceal with a fantastic hair-do.
I have avoided the camera for a while, so no post-wig pics, but it is a damn sight better than what it is without it!
Stacey
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Comment by Lisa on August 22, 2008 at 8:35am
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That is so great to hear Stacey. The courage you found is amazing to me. I am not sure yet if I will end up with a wig too. It seems to look that way at times. The whole back combing thing makes me think there will be unmanageable tangles. Is that true? What kind of alopecia do you have? Thank you again for sharing your story with me. Take care and talk with you soon! Lisa
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Comment by Billie on August 22, 2008 at 9:46am
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+Lisa, Thanks so much for sharing this.. Your mom and I sound alot alike . I was diagnosed 17 years ago and I did the very same things to my boys as they were growing up. " Can you see it?" she would ask. She was referring to the bald spot she had on the top of her scalp. We would always answer "NO!" She drove us nuts over this. It seemed like forever when she would get ready to go anywhere. Her hand held mirror helped her to see if it was covered...never to her satisfaction."
I so hope my own boys nor their children EVER go thru this. I am VERY sure I drove them NUTS as well.
Your mom sounds like an amazing person and has raised a pretty amazing daughter as well. Keep your chin up and you ALWAYS have support here!
HUGS!
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Comment by estella garcia on February 2, 2010 at 9:44pm
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Lisa,i have tears running down my face reading this story,i am also asking my children everyday if they can see my bald spot,and of course its a no,they just say its your part.nine months ago you couldn't even see my scalp threw my thick curly hair.i don't know how to deal with this ,i was diagnosed on dec 29,09 with aga and te,i try to be brave and think its only hair .hopefully one day i can accept that,but i am not there yet. i am so scared of what tomorrow will bring, how much more hair i am going to lose. thank you for sharing your story.
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Comment by Pat on May 17, 2011 at 11:32pm
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I can so relate to how your mother constantly asked if you could see her bald spot. I used to be so much like her, always thinking everyone could see my spots/thinning hair. I was obsessed and it drove my hb and daughter crazy. In the end I learned not to say anything, which was even worse for me. Thanks for sharing this. My daughter who was only a teenager at the time and going through a crisis far worse than my hairloss, recently said to me she doesn't know how she would handle it if she lost her hair..it is such a feature of who she is. We never know how anyone feels until we walk in their shoes.
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