Who Needs Hair Anyway?

Alopecia areata is a funny little condition.  Being a bald woman elicits stares, questions, and concern for my health.  Overall there is nothing wrong with me health-wise.  My immune system, due to some trigger or some stress, just decided to attack my hair follicles, and now I'm bald.

These are the recent comments my family has received due to my baldness:

Hubby is at the grocery store with all the kids.  The cashier, full of concern says, "And how is your wife feeling? Is she doing OK?"

Hubby just says, "Yeah, she's great!  Thanks for asking." 

I was out of town recently, and my parents took the kids fishing.  There were two little kids there to play with the boys.

Number Two looks at the eight year old boy and says, "My Mommy is bald, did you know that?  My Mommy is bald!"

The 8 year old looks at Number Two with a scoff and says, "I'm not listening to a word you say."

Mostly my kids love the "awe" factor of having a mother without hair. 

Number One had a friend over, and I walked in wearing my baseball cap after a workout.  Number One says to me, "Mommy, take off your hat and show Max you're bald!" 

Nice way to put me on the spot, kid.

I don't mind being bald.  In so many ways it's easier than having hair.  My hair is only washed once a week, and then hung to dry.  It takes no time to get ready in the morning, because all I have to do is put the hair on and not waste any time on styling.  And on hot days, it's easy to make myself cooler by simply taking off my hair. 

The one thing I do miss is eyebrows.  I've been toying with the idea of having them tattooed on my face.  Not sure if I want to commit to that, and I haven't even started looking into prices yet.  But eyebrows round out your face.  They give a visual clue showing people where your face ends and your skull begins.  Without it, I sort of look alien! 

I hope perception of alopecia is changing. I hope people are becoming more aware of this condition, as it currently affects about 2% of the world's population.  In recent years, more research has been done and more attempts to spread the word about alopecia.  Because of its nature as a benign condition, funding is short and therefore a cure is still in the works.

Recently I've been reading Libra by Don DeLillo.  He describes David Ferrie, who was alleged to have been involved in the assassination of JFK.  Ferrie suffered from alopecia areata, as an adult. 

DeLillo states, "Ferrie suffered from a rare and horrific condition that had no cure.  His body was one hundred percent bald.  It looked like something pulled from the earth, a tuberous stem or fungus esteemed by gourmets." 

This description of someone with alopecia made me wince.  I almost want to write DeLillo and ask him why he chose to describe it this way.  Is it to make Ferrie out as a bad guy, some mutant?  I'm not far enough into the book yet to answer that question, but as a sufferer of alopecia I feel his description is harsh.

I'm pretty sure I don't look like some "tuberous stem," pulled from the ground.  I've accepted my
baldness, but still suffer when others feel the need to lower the self-esteem of people just because they're different.  And, I realize it's just a paragraph in a book, and I'm sensitive to it because I've suffered from this condition since I was a child, but I feel like his usage of words makes it seem like alopecia is akin to leprosy or something. 

I'll have to think longer about the eyebrows.  Would adding eyebrows to my face add or detract from the fact that I have no hair.  Do I even need them, or do I just want them because I haven't entirely accepted and become okay with the fact that I look different from everyone else?

Let the Editing Begin

Yesterday, I started the editing process.  It is a HUGE step in the right direction.  It's also a HUGE job, and I felt slightly overwhelmed reading through my work and wondering who the heck wrote it.  That's the way I'm supposed to feel so I can make the necessary changes, right?

After this, I need to work on a query letter and let about 400 people read it so I can make sure it looks its best.  Send to agents who are soliciting new authors. Then just wait for the rejection letters to roll in...and if I'm lucky, an acceptance. 

I did a little bit of reading about query letters yesterday and about rejection slips.  I also perused some contests coming up, and I'm debating writing a short story for one or two of them.  Short stories aren't my thing: novels are, but I think short stories are a good way to get recognized and maybe if I submit enough of them I could win a contest or two to add some experience to my query letter.

Speaking of experience: I have none.  I wasn't on the newspaper in high school, not an English major, never really wrote for anyone but myself until this year.  This is all new to me, and it is still slightly overwhelming.  I'm proud of my work though, and I DO want other people to read what I wrote. 

I started the short story yesterday, about a little girl coping with Alopecia Areata for the first time.  This sounds familiar, right?  Writing about this is somewhat cathartic for me, and even though the little girl in the story is not me, I had some of the same fears and thoughts that she did when I first started losing my hair.  I struggled with accepting myself, and honestly some days I still do.  But I think the story will be good because it comes from my heart.  I have the general idea in my head and now it's just a question of how to par it down to 6,000 words.  Six thousand words is awfully small, especially when you're used to writing novels and not short stories. 

Dare to be Bare

Most days I walk through life with a wig on my head.  I go to work with a wig every day, covering up the fact that I have no hair, one of the most unique things about me  Everyone at my office knows I'm bald, but for some reason I don't feel comfortable there without my hair.  It seems unprofessional, and I don't know why.  Plus, since I work in a service-based field, all the questions from customers would probably be a bit overwhelming. 

My Mom and I went out the other day to look for new hair, because I hadn't bought a wig in about a year.  My old one was getting old and dirty, but had lasted the longest out of all my wigs so far.  We went to the same place, and I bought this:

 

 

I absolutely love it!  I think it's cute on me.  The only problem is the bangs swoop into my eyes a little bit more than I'd like. (I probably just need to part it differently)  It has a micro-filament cap on the inside, so you can actually see my scalp through the top instead of the stitches that were on my other wig.  This makes it look more real. 

 

Still, when I'm at home and on weekends I'd rather just walk around bald.  I feel comfortable enough with myself not to cover up the fact that I don't have hair.  It's taken me a long time to accept that I have alopecia areata and my hair probably will not grow back.  I don't mind explaining the disease to folks and telling them what it is, and in fact it can start some pretty funny conversations, especially with kids. 

 

The other day Darling Daughter and I were looking at photos on the phone:

 

DD: Mommy has hair in this photo.

 

Me: Do I always have hair?

 

DD: Looks at me quizzically.  No.  She's probably wondering why I'm asking her these silly questions.

 

Me: Why not?

 

DD: Because you took it off. 

 

As plain as day, those words came out of her mouth.  Pure and simple acceptance even though she knows this is different.  She doesn't remember me any other way, besides bald and with a wig.  I'm sure when she's older she'll question why I don't have hair, but for right now she just accepts it for what it is. 

 

 

 

And speaking of alopecia: yesterday, I received an email for their 28th Annual Conference in St. Louis, Missouri this year. 

 

 

I would seriously LOVE to go to this, but we simply don't have the funds.  I would love to be an inspiration to some children who are struggling with the fact that they are different.  I'd love to hear what they have to say about research, cures, acceptance.  I finally started giving to NAAF this year, because I thought if there's one cause I should support it's this, something so personal to me. 

 

The NAAF website is full of wonderful resources for people with alopecia areata.  It lists support groups, personal stories of people with alopecia, the latest research news, and how to cope when you or your child has just been diagnosed.  A wonderful resource for anyone struggling with this autoimmune skin disease. 



Consider Donating to the NAAF

Today my act of kindness (#8) is very near and dear to my heart.  I committed to donating $8 per month to the National Alopecia Areata Foundation.  This small donation will only be $96 a year, but it's what I can afford.  All I have to do is give up eating lunch out once a month.  $8 per month to help fund research and find appropriate treatments for this disease.

As a child, I suffered to accept myself.  I hated my bald spots.  I was so embarrassed by them.  One year at camp when I was 11 years old, I kept my hair in a ponytail for 5 weeks, because I didn't want anyone to see that I had bald spots.  I think I pulled out my rubber band once and washed it.   I hated being different.  I hated when people stared and ostracized me.  It's hard to be different when you're a kid, because kids just don't understand.  Plus, I didn't understand when I was little that by educating people they'd begin to accept me. 



Wearing a sailor's cap to cover my spots

I'll never forget in 2nd grade, when I had a lot of uncoverable spots and my Mom bought me two wigs: one long and one short.  I used to interchange them all the time, so I know most people knew they were wigs, but apparently not all the kids caught on.  We had a substitute that day, and we were working on something.  Darryl came up to me to ask me something, and his hand caught the side of my wig pulling it off.  Rebecca shouted, "Lauren's head is falling off!"  I was mortified, and the substitute had no idea what to do.  She put my hair in a paper bag and sent it home with me that day, instead of calling my parents or taking me to the Principal's office.  I can look back on this and laugh now, but as a child it traumatized me. 

Knowledge is a powerful thing, and as I grew older I learned this.  When I lost all my hair recently, I was upset.  I was embarrassed again, almost reliving my childhood.  I just want eyelashes and eyebrows and for my head not to be cold when it's 20 degrees out.  I want to fit in, like everyone else does, even if they won't admit it.  But, I began to accept myself and spread my knowledge of alopecia areata to everyone I knew.  I began telling people about the disease, including my children and their friends and my nephew (who insist that I am not a mammal because I don't have hair!). 

With a little more research hopefully they can find a definitive cause of this disease and begin working on a cure.  To be a child with alopecia areata is so hard socially, but it shaped who I am so I wouldn't change it.  I'm just happy I can give back to the NAAF, as they have inspired me to embrace myself and my hair loss and educate those around me about it.  





With my Adorable nephew this year.

Three Month Hiatus

I've been gone from the blogging world for THREE months.  I've been consumed by reading, taekwondo, kids, husband.  Too many good things and too many bad things going on for me to focus on writing.  I always come back to writing though.  I miss it too much.

I'm only about fifteen pounds away from my weight goal.  Here's a recent photo of me with Darling Daughter:

 

 

I'm starting to feel more comfortable with my baldness.  I've been completely bald over a year now.  I will now leave the house bald without a second thought.  I generally only wear my wig on weekdays, to work.  I hate the wig.  I would rather be bald all the time.  I know how to address the questions, and the look of sadness in people's eyes when they see my bald head and three kids!

 

I went to a spin class with my dear friend, Miranda Grace, the other day.  Afterwards, a woman came up to me and said, "You did such a great job!  You're such an inspiration to us!" 

 

I just shook my head and I said, "I don't have cancer.  I just have alopecia."

 

She looked at me and asked a few questions then said, "Well, you're still an inspiration.  You're 'real.'  You truly are who you are."

 

Who else would I be?

 

The three musketeers are doing wonderfully.  I am in awe as their personalities develop, and they grow and change.

 

Number One is an extrovert just like his mother!  He can't get enough of friends and play.  He is on the gymnastics team this year, and he works out six hours a week.  He loves physical exertion, and it helps control some of the manic energy he has.  He still scares me with his wild streak, and his independence.  He is definitely a risk taker.  He decided this year to cut off all his curls, and I finally let him. My sweet firstborn is growing up more quickly than I want! 

 

 

 

Number Two started preschool this year.  I was convinced, he would be my struggle as far as school is concerned, but so far he has not proved so.  He is good natured, and he is a rule follower.  He learns easily, and without much instruction.  He still tends to be my couch potato. 

In fact, when I asked him if he wanted to take taekwondo this year, he said no.  I asked why not.  He said, "Mom, I don't like to exercise, and they make me stand the whole time!"  He is still in love with Lightning McQueen, and loves to play "Injas!" 

 

 

 

And Darling Daughter.  The little bit of pink in my life.  She is growing.  Her vocabulary has expanded lately, and true to the nature of a girl, she is bossy and demanding!  She is a sweet girl too, and fiercely attached to me and her Big Daddy!  She loves to pretend to go shopping. 

 

The other day, we were having pork chops for dinner.  She said, "What for dinner, Mommy?" I said, "Pork chops, sweetie."  She looked up at me, full of sass, and put her hand on her hip and said, "I have cereal for dinner, OK Mommy?"  I stared at her in disbelief.  No, not okay!  She ended up eating a whole pork chop!





Stare Trip

Last night, I went to kisado for my Wednesday night workout.  On the way home, Hubby texted me on my dying phone that we needed milk.  I'm just happy the phone had a little bit of juice left, because otherwise we'd be shuffling around trying to find something else besides cereal to make the kids for breakfast.

I debated stopping at the store, though, because I didn't have a hat with me.  I hopped in the car bald, as an apt to do on the way to TKD or kisado.  I took the right into the grocery store parking lot at the last minute. 

I guess, I'm sort of insecure about being bald still, especially in an environment where there are a lot of people who will stare at you and judge you but not ask you about it.  I think this comes from that fact that I was bullied as a child.  I always wanted to hide my head, so it's hard to walk into an environment with people you don't know, knowing you're different than everyone else and wondering what they're thinking about you.

Still, I walked in.  I booked it to the frozen food section to grab a lunch for tomorrow.  Then I grabbed some string cheese, as I felt in the need for some dairy. People were looking at me the whole time, some staring blatantly, some glancing and then turning their eyes.

I walked over to grab the milk, and one of the Publix employees who is there on the weekends turned to me and greeted me. 

"I see you don't have the troops today," he said. 

I smiled, "Nope, left them at home!" 

"Must be so much easier," he said. "Have a good night."

Leaving the store, I wondered why I felt so much trepidation stepping in there in the first place.  As humans we want to feel accepted by others. We may say that we don't care what people think about us, but it's not really true.  Everyone wants to feel accepted as part of a community, part of the group. 

We learn this from an early age, in tests: "Which one is different? Apple, Banana, Broccoli."  We learn to seek out differences, so when someone different is in our presence we stare.  In a smaller setting, usually people don't have problems asking questions about it, but being thrown into a grocery store and everyones' mind churning a mile a minute thinking things about you is quite different.

Honestly, I think going into the store was a major breakthrough for me.  I mean, some people won't even leave the house without a full face of makeup, and I just went out without putting my hair on.  There was a time if anyone asked me about my alopecia I would just turn red and start crying, and it took me a long time to realize spreading awareness of the disease is the key.

So next time you see someone who is different from you, be sensitive to their needs and try not to stare so much.

Love, not Hate

Everyone judges.  Everyone looks at other people sometimes and feels like they are doing something wrong: sinning for lack of a better word.  Today, I read a blog post by Single Dad Laughing (SDL) called I'm Christian, Unless You're Gay.  This post spoke to me about LOVE.  I, along with almost every one else in the world, has a habit of judging others as SDL speaks about in his post.  (I'll love you unless...) 

I also, although I believe in God, have always shied away from the church to a certain extent, because of the hatred that stems from people's so-called Christian beliefs.  Looking at others with disdain, but not taking care of aspects of their own lives. (And certainly, this is a generalization because I know some great Christians too)

I know what it is like to be different.  As a little kid, I had to struggle with hair loss.  I was bullied, pushed down on the asphalt walkway at my elementary school by a little boy named Rondre who didn't understand that some people are different.  I was beat up.  Kids talked about me behind my back.  Even some adults didn't have the guts to ask me about my hair loss, instead making assumptions and spreading them. Being different should not bring fear into people's hearts. Don't fear differences, embrace them. Seek knowledge first, and don't judge someone for their differences.  In the end, them being different has absolutely NO impact on you.  It's their life, not yours.  Having alopecia areata made me more aware and more accepting of people who are different.

Our society has become more judgemental, filled with more hatred, and less understanding of differences.  Hate is on our televisions, sometimes disguised as Christianity or patriotism or any number of ideologies.  If humans have a reason to hate, then they will.  We'll fight a war to stop hate, and the whole time we'll HATE the people we're fighting and we'll become terrorists AGAINST them spreading more fear and hate, targeting whole populations for the bad of a few.       

A few years back, a man named Martin Luther King fought for Civil Rights in the United States.  I've been to the church where he used to preach.  Martin Luther King used his religious beliefs for good, to help free a people who had been targeted by hatred for hundreds of years.  Now instead of African Americans, gays are being targeted (or fill in the blank: anyone who is different from you, any minority).  Isn't it time we started accepting people, instead of finding ways NOT to accept them?

Setback

I was going to sit down and type out a Wayback Wednesday post. I had the topic all picked out. I had even jotted down a few memories. I had asked Hubby about it, jogging my memory of our past together. Then I didn't feel inspired. I didn't feel like writing it today. I wanted to write something else, but no words would come. I sat staring at the screen wondering when this became my life. Wondering when everything started changing.


I wondered if change is good? Does thinking and analyzing just make situations worse? I've dealt with so much crap this year. I lost all my hair. I woke up one morning with the realization that no amount of pretending would make it come back. My hair was gone. I was completely bald. I realized this was just one of those things I'd have to deal with. I went with the flow. I went with my Mom to have a wig made, and when I tried it on I wanted to cry. I HATED the way it looked on me.  I did not look like ME. It made me wonder if I FELT like me. I think it must have been post-traumatic stress. I went from having a head full of hair with small spots to having no hair at all. Losing my hair seemed like such a trivial thing to be upset about. I mean, people all over the world were dying of diseases and starving to death, and I'm acting all upset because my hair fell out! These are conflicting emotions I still feel today.


Losing my hair also inspired me to make something more of myself. I began looking at the aspects of my life where changes needed to be made. I realized I needed to lose weight and exercise. I wanted to become healthy for my kids. I wanted to become healthier for me. I started building up my confidence in my appearance again. I began going places bald, and I felt pretty darn good about the way I looked (still do). I realized real friends and people don't judge you on your appearance, despite how much it may seem so.


I also found myself again, buried under all the baggage, bad words, and garbage I (or we) had put in the way. I don't want this to change. I like who I have become this year. I love writing. I like taking taekwondo. I love the friendships I have forged. I feel genuinely happy with MYSELF, but there are parts of my life which make me want to SCREAM! They make me want to ask, "Where do I go from here? Where do WE go from here?" There is no easy answer.

It’s just a setback…

A Bald Barbie!

I read Bald and Beautiful...Barbie today on the news.  Basically a group of women have come together and written to Mattel to ask them to create a bald barbie doll.  This group of women either suffer from alopecia, have a child who suffers from alopecia, or they or their child has lost their hair to leukemia.

Personally, I think this is a great idea.  As a young child, suffering from alopecia having a visual conversation starter would have been great.  Using the doll as a tool to tell others about my alopecia would have been helpful for me.  Something tangible to use as a prop. 

It's really tough being a child with hair loss.  I had an extremely hard time talking about my hair loss.  I know my parents helped out a lot by telling my teachers, preparing them for it, but I still had some horrible experiences.  It took me a lot of time before it was easy for me to talk about it.  As a child, when someone asked me about my bald spots, I would usually just burst into tears.

I have some horror stories of dealing with alopecia as a child.  When I was in second grade, I had to wear a wig to school for awhile, because I had lost so much of my hair.  One day, we had a substitute teacher, and she was not aware that I was wearing a wig.  One of the boys in my class, came up to me to ask me something, inadvertantly grabbed my hair and my wig fell off.  I still remember Rebecca screaming, "Lauren's head is falling off!"  So funny now, but I was mortified as a child.  The substitute was at a loss of what to do, so she stuffed my wig into a brown paper bag for the rest of the day.  Really, come on people.  Send me to the office, call my mom, but stick my hair in a brown paper bag and go on as if nothing happened?  Some people are hopelessly inept in dealing with childrens' needs.

And I did some crazy things.  I went to camp at eleven, and I left my hair in a pony tail for FIVE weeks.  I was so afraid when I showered someone would see my bald spots.  I was also afraid I wouldn't be able to put the hair up to cover the spots. My mother had always done those things for me.  (I still wonder why my counselor did not pull me aside and ask me about it!)

So, yes, having a bald barbie doll would have been good for me.  It would have showed me that it's okay to be bald.   Being different isn't necessarily bad, it's just being different.  I wish as a child someone would have sat me down and told me it was okay to talk about it. (I'm fairly certain this happened at some point towards high school with my Dad).  Talking about it is what has led me to accept my hair loss as an adult, and it leads others to be more accepting too. 

Although Mattel doesn't accept outside ideas, I am hoping that they will pick up on this one.  And, no, they can't create a Barbie doll for everyone's situation, but having a child with alopecia who can identify with a bald barbie could be great for her self esteem.  It could show her that it's okay to bald.  It doesn't change who you are inside.  It's okay to talk about it, to accept yourself and to seek acceptance from other people.

I Have New Hair!

My Mom and I went shopping for new hair the other day!  We bought my third wig.  Hubby snapped a photo of me wearing it tonight:

I'm pretty fond of the color.  Actually, I think it is the best color choice that I've made, so far.  I've learned a lot of things about shopping for wigs since my hair began falling out again.

                                               1. More expensive is not always better.
                                               2. Human hair is pretty and looks real, but it is hard to take care of.
                                               3. Wig shampoo is important and so is conditioner.
                                               4. Wigs are not sweaty and hot like they used to be, but when I       
                                                   start wearing a new one my head always itches for a couple of days.
                                               5. When you're born a natural blonde, then maybe you should pick a
                                                   lighter, blondish color to match your skin tones.
                                               6. It's really fun to change my look whenever I want to!
                                               7. I look best with short hair. 
                                               8. Tape is not necessary as long as I do taekwondo au natural!
                                               9. Synthetic wigs don't like heat. 
                                             10. Human hair wigs don't mind heat, but they don't keep their style.

This is probably WAY more than you've ever wanted to hear about wigs.  Wigs are a big part of my life these days.  I mostly only wear them to work.  I'll wear them on the weekends if I'm going out at night, but during the day I just put on a hat over my bald head.

Speaking of bald heads. Hubby shaved mine COMPLETELY today. Not a hair left. The little brownish/blondish fuzz was driving me nuts. I think it looks so much better.

Ok, the perspective in this photo is odd.  I didn't have anyone in my immediate proximity who could snap the photo, so I just threw my hands up over my head and took a photo of my bald head.  Actually, I think this photo is so cool, because despite being bald I've never seen the top of my head.  It looks to me like I need to go do some bald sunbathing so that it matches my skin tone a bit better!  

Anyway, back to the new wig.  It's funny the comments that one receives when they just show up with new hair on one day.  This is what I heard from my friends and co-workers (they all know I have alopecia areata, by the way):

-Wow Lauren, did you get new hair? Now, how many times a day do you hear this?

-Did you color your wig? No, because wigs are chemically treated, and they can't be colored.

Upon going to taekwondo, then changing to go out with a friend: I went into the dressing room bald and came out with hair on.  One of the girls said, Now, I definitely cannot do that when I change!

I changed hair at lunch and my co-worker says, It's like you came in as one person and went and had a total makeover in just one hour!

People just crack.me.up.

Alopecia Areata Triggers

Here’s an interesting article promoting flu shots to prevent hair loss from Alopecia Areata:

http://vitals.msnbc.msn.com/_news/2011/12/13/9417169-get-your-shot-swine-flu-may-cause-baldness

I get my flu shot every year—I’m anti-trend, so I’m pro-vaccine for me and my family.  I do think that Alopecia Areata is triggered by something, like the flu, or other viral illnesses, but I also think it is genetic.  I think it’s plausible that each one of my brothers and sisters has the gene and that each of my three kids has the gene, but nothing has triggered their immune system to attack their hair follicles.  I think that my kids may pass on the gene to their kids, and their kids may express the gene by losing their hair as a result of a trigger.  Genetics are a crapshoot.  As my kids’ teachers like to say, “You get what you get, and you don’t pitch a fit!” 

I do hope that all the research the scientists are doing on this disease comes to fruition and they can find a cure.  It is particularly hard being a child with Alopecia.  Kids just don’t understand, and they are usually too afraid to ask questions.  This results in a) rumors and b) bullying.  I was the brunt of both of these growing up, and it made me who I am today.  I had to overcome a lot, but it made me more accepting of other peoples’ shortcomings, ideas, skin color, sexuality, religion, political affiliation, and the list could go on and on. 

Sometimes you have to look at what life gives you and learn lessons from it, and I personally think that’s why I was given the gift of Alopecia.