Anniversary-Almost one whole year without hair!

Its February 2012. At the end of February 2011 I realized after seeing a photo of myself, that my alopecia was beyond repair; not enough hair on my head to "cover" the spots as I had been doing the past 18 years. I went to my hairdresser, who was instrumental in fixing what hair I had left throughout the years to shave off what was left of my hair.

That happened on March 5th. Its almost a whole year. I've grown a great deal. I have had many realizations, some good, some horrible. Mostly, I realize the one main thing, that I have to love myself, just as I am. I didn't think I did; I didn't think I had that kind of strength. Despite all the adversities life has thrown at me, I am thrilled to realize, I like me, I love me. I don't think I would be able to handle having alopecia, losing my hair if I did not.

For the most part, I have not had too many issues. Yeah, I've been stared at, I've had obnoxious children who reflect and parrot their parent's stupidities; but I come from the "sticks-and-stones may break my bones but names will never hurt me" era. I'm lucky. I can't say I've been "lucky" in other aspects of my life, but I'm fortunate to be lucky here. I've had strangers call me "beautiful". I had one guy on the streets of Philadelphia say "Yo Sis, looking good; way better than the others with their horse-hair weaves looking all phony; looking smooth, sister, looking smooth". That was a real shot in the arm. From one extreme to the other.

I've lost most of my eyebrows, they're real short. I went to a well known cosmetics store and was shown how to paint in my eyebrows, using a kit with a template. Its amazing. They look real. My eyebrows went real fast; incredible.

I never wanted to wear wigs. I feel extremely comfortable bald. But winter approached. I never realized how cold I would get without hair on my head. As well, I was working "temp" and most office buildings at different times of the day get real cool. Well, they felt cool to me with no hair. I bought a wig. It was human hair. I found a style/color that looked like it could be me. Mind you, I am bi-racial, there's no way on God's green earth I had straight hair, but it looks good. I noticed that on the days that I wore my wig, more people held the door open for me; more people smiled, acknowledged me. When I chose to go bald, people looked past me, as if I wasn't even there. I found that interesting.

The most difficult thing has been interviewing for work. Yes, I am a musician, but lucky is the musician who earns a livable wage. I was laid off from my day job in 2008. I interviewed for one job that did not pay well. At this point in my life, unfortunately a pay-job is better than no job. The new trend, given our economy, is that jobs are paying less than they used to. Thinking that I was not going to be properly compensated, I broke my rule and told the interviewers about my alopecia. The thing was, I thought it was bad enough to not be properly compensated and insult to injury to have to hide myself subsequently. They thought the wig I was wearing was my real hair. They said they didn't care about my alopecia. Funny I don't consider them "accepting" I consider that they were lucky to find a candidate willing to take a job for that low a salary. I'm in the running; I know they've been checking my references.

For the most part, I've been interviewing with a wig and my plan, hoping I get a job, is to wear a wig til I pass my probation period, and then advise my immediate supervisors of my condition. By then, summer will be approaching and I can be cool and comfortable.

I've also found that many of the people I've dealt with in the business of music assumed I shaved my head for sport, to reinvent myself, as a "schtick". I find that hysterical. Why, oh why, would I shave my head if I had a healthy head of hair? as if that could remotely accelerate my career. The world is full of ignorance, dare I say stupidity.

I will say I had fun trying wigs on and may purchase wigs for a "look". THAT I'll do deliberately. Its kind of fun cause everyone that knows me knows I go bald, so if I do this, it will be like wearing a new clothing style. Its like Halloween whenever I want!

In this past year I have felt more comfortable than I have ever felt in my life. 18 years was a long time hiding spots, praying for no breeze, nervous my spots were showing. All these spots contribute to insecurity and I am glad to be rid of those feelings. I am amazed at those who readily accepted me.

I saw a young girl with her mother at the bank one day. I could tell the little girl had alopecia, I don't know something said to me she did not have cancer. I suppose it unfair of me to assume. I wanted to speak with her, perhaps tell her about the Children's Alopecia Project; but they left as they were a few people ahead of me on line. I then did my banking and proceeded for last minute shopping - it was the day before Thanksgiving. I was with my twin sister, Barbara. I told her about the little girl I'd seen. We went the supermarket and there they were. I approached the girls' mother and introduced myself. I said "Hi, I noticed you and your daughter in the bank a little while ago, does she have alopecia?" and she said "Yes, she does". I then removed the cap I was wearing and said "so do I..." The mother had such a look of relief. I then turned to speak to the girl and she looked up at me with her eyes real big. She pointed at me and said "Mom, that's the lady, that's the lady from the Benefit, she was on tv, she was on tv..." She had seen me on the NBC 10! Show when I was promoting the Musicians for Children's Alopecia Project Benefit. We talked for a bit. She told me she hopes to attend Alopeciapalooza this summer. She said they couldn't come to the benefit, school had just started and there was much going on. The girl's name is Gabriella. She told me she wrote songs too. She was beautiful. We took a photo together:

I am going to begin recording a new CD and one of the songs I'm doing talks about my losing my hair. I invited Gabriella to sing on the chorus. I am actually going to have a chorus of alopecian children sing on the chorus; Jeff Woytovich of CAP is helping me with this. Gabby was thrilled.

I saw a friend recently I had not seen in 30 years. He knew of my alopecia. He gave me a warm, friendly greeting. Then he said, "take that off, let me see you..." I removed my wig and he said, "you look beautiful".

That's what its all about.

I will continue to blog my further adventures as a recent Alopecian out in the world. Feel good my alopecian sisters and brothers; love yourselves so that others may love you. Its a beautiful thing!

Lili

Views: 421

Comment by Cheryl, Co-founder on February 5, 2012 at 2:27am

Awesome post Lili! I love the fact that you missed them and then saw them again in another store! I know a lot of people "tell" their story, with alopecia a lot of times we "show" our story.

Great photo too!

I also love the idea of a the CAP choir for your new song!

Comment by Bald and Fabulous AKA Terri on February 6, 2012 at 12:25am

AWESOME post Lili. you are fabulous xoxo

Comment by Donna Kooken on February 6, 2012 at 1:46am

Lili
What a wonderful story! I believe you were suppose to meet Gabriela. I am sure you have a life long friend.What a blessing.

Comment by Herminia on February 8, 2012 at 6:44pm

great story.. I admire anyone with alopecia that is brave enough to walk around bald. I wouldn't mind walking around bald publicly if it did not catch so much attention. People think your catchy.. It will hurt me too much.

Comment by Laura Maria on February 8, 2012 at 9:30pm

your story made me happy, proud of you, warm because you made a huge difference in Gabriella's life and also a little scared. are you getting treatment? i have been walking around hairless and hatless for 2 weeks. I decided to donate what hair i had left to locks of love figuring it is selfish to keep somethig that someone else needs and that i obviously cant have... kind of like a favorite shirt or something and that made me feel happy because it was the start to turning this alopecia into something positive versus something i am always trying to hide like a deep dark secret
everyone at work was shocked when i walked in with no hair and a hat,,,
i have never ever met nore spoken to anyone with alopecia and discovered this site this week. i spoke to a sweet guy from here lst night and was thinking about him today and hoping his day was better than yesterday
bottom line of my rambling is that now after reading what you wrote i finally feel i found someone who gets it... I would like to help you find full time employment... feel free to message me.

Comment by Lili Añel (aka Eulalia) on February 8, 2012 at 9:46pm

@Laura Maria - thank you. Treatment? There really isn't one. Whatever claims to be "treatment" for Alopecia and its various forms are temporary. When I was first diagnosed 18 years ago I did the shots to my scalp; the worse pain I've ever experienced, even worse than labor. I also used rogaine before it was over the counter; used to cost $200 a bottle. There is no treatment. I accept my alopecia. I like myself bald. I guess I am in the minority. I accept myself. Its just hair. It could be worse, I could be bald because of chemotherapy which would mean a terminal illness. Thankfully alopecia will not kill me. I will friend you and we'll email. You did a good thing for Locks of Love. There is freedom in not hiding anymore, take it from me. Thanks for responding.

Comment by Laura Maria on February 8, 2012 at 10:07pm

there is a lot of freedom i've had this for 16 years... had totalis at one point and i do the injections every two weeks.... you are so right that laboir pains dont compare to the injections. i am blessed to have met you here and thought you should know that im balling listening to your music. do you have youtube videos? i HAVE to blast your music on my facebook if you are ok with this.

Comment by Mary on February 8, 2012 at 11:27pm

Wonderful Lili! You're an inspiration!

Comment by mabaker on February 10, 2012 at 1:31pm

You are beautiful xx

Comment by Lili Añel (aka Eulalia) on February 10, 2012 at 1:34pm

Thank you, mabaker!!!!

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