These are all pictures of me. Notice anything?
I have Alopecia. I have had it since my senior year in high school although at that time it was not noticeable. I went completely bald in 1994 when my natural golden locks failed me to the point that I could no longer fake it. I shaved it and wore a hat and later a bandanna. It was during a great transition period in my life in which I had just broke it off with Asshat and was alone in Phoenix, Arizona. To prove more to myself than anyone else, I refused my parents pleads and offers for help. After moping about and drinking myself into a dangerous situation or two, I picked myself up and got on with my life. A new chapter.
Other than the stares, the often asked questions of cancer, and the painful self-awareness of just how different I looked the first roadblock was the discrimination I faced when trying to find a job. Apparently no one wants to hire a bald girl in a hat or bandanna. I sold the only treasured possession that I had managed to hold on to, my electric guitar, and bought a cheap wig. It itched. It was hot. It looked wiggy. I hated it but the very first job I applied for while wearing it I got. From that point on I lived a double life. I wore that evil blond wig on my bus ride to and from work and all day at work but as soon as I got to the place I called home, a two bedroom apartment in a sketchy neighborhood I shared with two roommates, it was immediately replaced by my old trusty dark blue bandanna.
I gravitated towards the party scene partially because both of my roommates were over the age of 21 and partially because I had a rather sheltered childhood and was amazed at what the city and grown-up life had to offer. I am from a small farming community. I thought ice cream trucks and dance clubs were only found on t.v. We went to parties on the weekends and when there wasn’t one we went to dance clubs. In this environment my lack of hair was not looked at as strange, it was a form of self expression. I was a cute punk girl and that was fine with me (some of those punk boys are rather cute, you know.)
The story continues and while there is a lot I can write about my experience with hair loss and how it effected me on a multitude of levels, I will save it for another post or two. I want to tell you about my Alopecia now because it has been on my mind a lot lately.
I started wearing wigs in January 2011, the year Cody started kindergarten. I started wearing them for him, so he would not be the boy who’s mother is bald. I did not want him to be teased. I did not start wearing them for myself but it has turned into just that. I enjoy not being the only bald woman in the grocery store. I like not being asked if I am “fighting the good fight” and then have to listen politely to a story about someone’s mother/brother/aunt/uncle/cousin is battling cancer and how awful it is while I am waiting in line at the post office to buy stamps.
I like how I look with hair. I like having hair but I am not very good at it yet. When I catch a man looking at me in the produce section I immediately think something is wrong with my hair (my friends assure me this is not the reason I am being looked at, but I am not so sure.) I have never been a girly girl and do not follow fashion trends, especial ones involving hair. Let’s face it, the last time I had any hair to speak of it was at the early 90’s, almost the 80’s and we all know how awesome 80’s hairstyles were. I shiver to think of what I would look like if I was left to my own devices With the help of a lady who also has Alopecia but who is in fact a girly girl, I have entered the world of wigs.
It is a science. No, it is an art form. I am not very good at art but I do well with science. I am trying and I am learning. This summer I have transitioned from synthetic wigs to human hair ones and have gone from just above the shoulder length to about three inches longer. My new wig is much more comfortable but takes more work to maintain. I dread the start of the school year because my hair is not only longer but the color is a bit different. I am not sure what to say when people comment that my hair grew fast or ask me where I get my hair done. I do not want to deceive anyone and if I try to keep it a secret then it becomes this big thing to hide. My main concern is that Cody does not get teased over this.
So that is where my head is now, thinking about hair.
Heartfelt and touching piece. I admire how you have handled the situation.
Thank you. It has been an ongoing process with my emotions ranging from anger to sadness to “I don’t give a crap what anyone else thinks”.
I’m sure it has.
A friend of mine had alapeica (speeled correctly?) and I never had the nerve to ask him about it.
I am one of many who are undoubtedly honored that you chose to share your story with this community of people who love your writing, your candor and heart. You have once again shown everyone how to make lemonade. In a perfect world, you would not have to worry one moment about how other people would react if you chose not to wear a wig. For the reality is – you are incredibly beautiful – with or without your hair.
There is such a trust and respect in this blogging community that I knew I wanted to share about this but it still took me over a year to do so. I had to stare down that Publish button this morning but I am glad I pushed it.
I am glad I have started experimenting with wigs and as I research them I find so many other Alopecia people who are learning, offering advise, and many more who are struggling with the entire process. I am mulling around the idea of setting up a salon for wig wearers such as myself (my hair lady has done so and has offered to help me and provide me her vendor info and send clients my way!) I still have a lot to learn and do not in any way feel qualified yet but my wheels are turning…
How cool would that be!! You would be awesome at that – your compassion, humor and gentle touch would reassure the most anxious of clients. Keep those wheels turning – I think it is a wonderful idea…
I really admire your courage to share this piece. It took a lot of guts and I think it’s awesome that you felt comfortable enough with us to share.
Thank you, it was a hard one to publish button on. I have found nothing but kindness and support from this wonderful community and I am glad to share this little piece of me with you all.
Thank you for sharing this beautiful post. 🙂
Thank you for reading and commenting on it.
Wow, I am surprised and moved! It must have taken a lot of courage to write this. I can only imagine the cancer comments getting old really fast. I had never heard of Alopecia before reading this, so I’m glad I learned somthing new! You look beautiful, by the way, and the wigs in the bottom picture look nice. Thanks for sharing!
Yeah, the cancer comments were hard to deal with. Over the years I tried to be compassionate and listen to the stories but I did get tired of it. And then the comments about how at least it was not cancer which made me feel like I was being so vain for my little nothing of a condition. I am happy to have fallen into wearing wigs and looking “normal” – it does make things easier and makes me happier. All the pictures of me with hair in this post are my different wigs. It is hard to decide on one color, style, and cut to last forever so I have experimented.
Thanks for writing about alopecia. My only exposure had been from Stan Sitwell from Arrested Development. More power to ya, sister!
Hahaha – I love Arrested Development, one of the best shows ever! 🙂 Thanks for the support.
I think it was very brave of you to share your story Lauren and I would never had known if you hadn’t shared. 🙂
You are welcome. I wanted to write about it and see where it took me. (p.s. who is Lauren?) 🙂
Snap, I thought about it after I posted it. For some reason I thought your name was Lauren, I apologize for that! YOU are brave and who knows, maybe Lauren is as well. 🙂
Hehehe – no worries, I just wanted to make sure I was not missing something.
Yet another reason for me to admire you. You are rockin, lady, hair or non. 😉
You are very sweet. Thanks for your supportive comment, it means a lot.
Very brave post. Thanks for sharing. From ages 9-25, I struggled with psoriasis. A very different “affliction” but also one that I spent lots of energy trying to hide. I have found that sharing stories like ours reminds us that everyone has some kind of struggle and that true beauty is on the inside.
BTW – I like the longer hair!
I am sorry to hear about your experience with psoriasis. It does take a lot from a person trying to hide something like that and wanting to desperately just blend in with the crowd. It is good to share our stories. I have been reading a lot of Alopeica stories from those who have it or have children with it. They are heartbreaking but show such strength. Beauty is not hair or skin or white teeth or whatever else one sees on the outside it is the internal beauty that really counts.
Thanks for the comment on the long hair! I like it too but it is taking a bit to get used to. 🙂
Funny how you never hear about something and then in one day you hear/read about it multiple times. Earlier today, I read an article in a parenting magazine about alopecia. And then I caught the tail-end of a talk show on the radio about it. And then I opened my email and read your post. Good for you for writing about it. The few pictures I’ve seen of you, I have always been envious of your hair. It’s gorgeous.
That is strange. Over the years Alopeica has been in and out of the news when various famous people have it and talk about it. Then there was the Schnade o’ Connor time period and I got all those comments. Ugh!
I am getting used to having hair again but it is always in the back of my mind. The boys love the longer hair when I make “twisty hair” – a braid. 🙂
Loved this! You look beautiful and brave. I’m sure Cody is proud of his mom and it has nothing to do with your hair 🙂
Ah, thank you! The boys think it is completely normal and sometimes wonder out loud if their hair might fly out the window when all the car windows are open! It makes me laugh.
shoes! you are such a wonderful woman and to share your story shows true bravery. you really should open that shop it would be great!
Thanks you! I would love to open a shop where I can help people. I need some more experience but really think this could happen.
Thank you for trusting enough to share — you look just great, but I am sure your punk days were kind of cool too!
Thanks. I like how I look now and am glad I decided to do it. The punk days were fun though… 🙂
Thank you for sharing about this…it helped me remember that we are not alone in coping with disabilities in our house! Your courage and plucky spunk in how you successfully manage it are admirable. Your journey is one of cruising through hardship with style! And thank you for the inspiration…
It was a bit strange to write about but I am glad I did. I do try to roll with things as best I can. There is no point in dwelling on the bad that is in your life the good is the stuff to hold on to and focus on.
I read this yesterday but was too darn lazily pregnant to respond…Shoes I’ve watched you grow so much in the last year as a writer and love seeing you take these leaps forward!!!! I’ve always told myself if I can’t be real through my writing then I shouldn’t be writing,you my dear are real!
And I like the longer hair!!! Don’t worry about the other school moms.
One of my friends in grade school(the one that sent us all the baby stuff and came to visit recently.) her mom lost her hair while she was pregnant with her second child. She wore scarves for a long time but like you got tired of being asked if she was battling cancer. My mom suggested that they go look at wigs and from that point on that is what she wore.I could see the transformation,for her,happen over night.Thank you so much for opening up your heart and letting us see in!
Lazy pregnant – ha!! 🙂
I agree with you about being real with writing. That is something I work hard to maintain. I will try not to worry about the school moms but that whole scene is really not my thing. I try to hang with the cool-supermoms but I am rather shy around people I don’t know and I am not one to engage in idle chit chat. Having hair has been great, I like fitting in and not being sideways stared at.
Bah I’m never part of the school moms groups…having the bonus girls in public school SUCKS.
I think you are very brave to have shared this here. I never guessed, from looking at your photos, but even though I’ve never met you I kind of feel proud of you for writing such an honest and sincere post about something so personal. I would imagine that your alopecia has given you a kind of strength that not everyone gains.
Thanks for directing me to this post — and now I’d like to apologize for asking if you had cancer. 🙂 Didn’t mean to put you in that position again. I know it must be so difficult when you have an illness that most people have never heard of. But I admire the honesty in your words. And isn’t it interesting (i.e. stressful), the things we moms think about when our kids start public school? My son started kindergarten this year and I can relate to worries on the playground. I just try to remind myself that it’s a lot easier for kids to fit in (at least at this tender age) than we moms think. Every time I see my son have a problem with another kid, or with whatever, though it seems huge one minute, the next minute they’ve made friends. Point is — you have enough to worry about that I would give yourself a break at the school yard! You can’t control what others say or do (other moms or other kids) all you can do is be a strong support for your kids and from what I’ve read in your blog, you are great at that. Very glad you stared down that publish button!
Please don’t feel like you need to apologize about the cancer question – it would have been my question to you if the situation was reversed.
Unfortunately my long hair days were numbered as the underside of the hair kept tangling something awful and even my guru hair lady could not solve the problem. We chopped it off to a cute bob that is easy to take care of and I still have the comfort of the cap I liked with the long hair (although if I am being totally honest, which I try to be, I really do miss my long hair!) So most of the people at the school do not know I wear wigs since my hair cut/color is almost the same from last year. I did go to a play date over the summer where several of Cody’s friends and their mom’s were there when I was sporting the long hair. They asked about my hair and started to descend upon me with their hands outreached, they thought it was extensions, and I kinda freaked out and blurted out that I wear wigs. I could have handled it better but so be it. As long as Cody is not getting teased and some nasty child does not try to pull it off while I am helping out in the classroom, I can live with it. 🙂
And you are right about kids getting along and rolling with things easily at this age. It is a good thing to be reminded of, thank you.
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What an amazing post. Since you wrote it, I have been feeling the urge to write you and tell you that I think your writing is wonderful and your openness is inspiring….but kids and full days have prevented me. So I hope this comment will suffice. love to you and yours!
Thank you very much for such a sweet comment. I know all to well about wanting to read a post or write a thoughtful comment but getting pulled is so many directions that it sits in the background until life settles. I have received support and kind words especially when I write about the “hard stuff” in my world. I write to get it out of me, to feel better about it. Getting comments such as yours just makes it that much easier to get through.