Bald Boogie! Boogie for NAAF!!! #NAAFboogie

First day back on the blog, and I'm asking for money.  Yeah--I know. 

Check out the link below!  I'm fundraising for the National Alopecia Areata Foundation (NAAF).  This cause is close to my heart, as I have had alopecia since I was 5 years old.  I've struggled with self esteem and self acceptance my whole life due to the loss of my hair. 

When all my hair fell out 3 years ago, I looked in the mirror and could not believe I was bald.  I didn't want to go out and face the world.  I didn't want people staring at me.  As hard as it was for me to accept as an adult, you cannot imagine how much harder it is for a child who doesn't have the words or emotional resources to deal with this disease.  From bullying by others to bullying of oneself for not fitting into the society's mold of "ideal beauty,"  this disease can have a huge emotional and psychological impact.

If you have it in your heart, click the link below and donate to NAAF.  Maybe together we can find a cure. 


https://www.stayclassy.org/fundraise?fcid=345667

#naafboogie

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?

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.