The Alopecia Diaries

Dear Diary,

I’m worried,  my eldest son might be growing a bald spot on his head.  I remember telling my husband how I was scared to have kids in case they get my disease.  The hardship and turmoil I went through I would never wish on anyone.

As a parent and as someone who went through it, I started asking myself,  Do I wait to take him to the doctor until I know for sure?  Do I wait to prepare the dialogue I need to tell him so I can give him the right peace of mind?  

What if the diagnosis comes back true?  Knowing that mommy wears a wig because of it and ends up having terrible anxiety over imagining if he needs to wear a wig as well. It makes me feel sick to my stomach.

I imagine the doctor coming back with a positive result and how he would react.  I can picture him looking down at the floor trying to be brave and becoming extremely quiet in front of the doctor.  

I imagine when we get home he starts to scream at me,  yell at me, curse at me, push me, hit me, hating me, hating the world, and wishing I was never his mom.  Wishing he was never born in this family.

I wouldn’t blame him.  I thought the same thing except there was no historical path to trace back to.  So there was no one I could blame.   So I ended up feeling alienated.  I started wondering if I was adopted or had a different father or worst of all, that I was the only freak of nature in the family.  That the world must hate me and perhaps I somehow deserve this.  Maybe I was a very awful person in my past life.  Which I don’t necessarily believe in past lives but sometimes when things just don’t add up properly,  you start believing in fate, destiny, god, the universe and the path that was written for you.

I can’t believe how afraid I am to make this doctor’s appointment.  I wanted this to be my battle, not something I pass onto anyone else.

If the diagnosis comes back positive, the only thing I can think of to tell him is,

“I know exactly what to do if you want to hide it.”

“I know exactly what to do if you want to leave it alone.”

“I’ll teach you how to live in this world with this and how to handle bullies.”

“I’m here as much or as little as you need. “

“I will always be here for you at any hour, on any day, no matter what.  I’ll  help you get through every difficult moment.”

The thing that scares me about this disease is how completely unpredictable it is.  It  can be ok for a while then out of nowhere, boom, a bunch of hair falls out, and you have zero reason why.

You can be happy and positive – it doesn’t make a difference.  The disease can still take an aggressive turn that doesn’t make sense.

Stress of course does play a factor as well as poor diet and poor sleep.  

But I don’t know what to do.  I’m freaking out.  I hate myself for passing on this awful disease when I could have decided not to.  I could have decided not to have kids.

I’ll understand if he hates me forever.  If I’m the blame, the source, the enemy.

I am ready to take his blows, his hate, his anger, his frustration.  I’ll take it all.  I’ll be waiting to hear his story.  I’ll be waiting for him to disown me and never want anything to do with me.

But, I’ll love him forever, always and to infinity.  

With everything that I am and more than he’ll ever know in this entire lifetime.

As always diary, thank you for listening,

Love,

Jenna 

The Alopecia Diaries

Dear Diary,

We are camping with the kids this weekend and of course we’re all excited about it.

I get excited thinking about watching the boys swimming in the lake.

Helping them build sand castles in the sand.

Having our little camp site set up with all our quirky gear.

Sleeping together in one tent, snuggling up tight.

Making delicious food on the BBQ and eating from paper plates and forks.

Having a night fire, roasting marshmallows and telling stories.  

When we got there, it sure was hot.

I love the heat, it’s just the heat doesn’t like wigs.

I know I could probably get away with going bald at the beach but I’m not brave enough.

The shocking difference of how you look bald even disgusts me when I see myself in the mirror.

It’s ok for men to go bald.  In fact, they look cool and badass when they do.

Women?  Not a chance.  They need beautiful flowing hair that looks attractive and feminine.

It’s as important as needing to get dressed in order to leave the house.

I follow one alopecia girl on Instagram and I admire her courage to go bald and eyebrowless in public.   

I’ve seen her pose in a bikini by a pool on a hot summer day and thriving in her baldness.

I’ve also seen her place her wig on her head while travelling on a train with no remorse.

At her wedding, she decided to not to be just one bride but two.   She was a bald bride and a bride with a beautiful wig on.   She wanted to show up as all of who she is, while sealing the deal of ‘until death do us part’ with her future husband.

She looked calm, content, happy and safe.

I adore her.

But I just can’t get over looking bald. I still want to hide it from everyone.  Forever. 

So anyways, back to the weekend.  I was sweaty, sticky and felt like my entire scalp was wet under my wig.

I wore a baseball hat for most of the entire time to help keep my wig down.

It sucks having to wear a wig.  

I get so jealous watching all the things other people can do that I can’t.

Like dipping their hair under water and feeling immediately cool and refreshed.

Riding a fast seadoo or speed boat and having no worries.

Having the freedom to wildly put their hair up or change their hairstyle on the beach with no mirror and without thinking twice.

I sometimes feel like I’m letting my kids down because of my limitations.  

They wish they could splash me with no hesitation or take turns pouring water over our heads and laughing.  Doing everything, everyone else does and behaving like everyone else.

I know they love me and I know they accept me for the way I am.  But every now and then my eldest tells me “I wish you didn’t have to wear wigs and that you were normal.”

I know he means well and isn’t trying to hurt my feelings.  He wants to see me “well” like everyone else.  I just keep telling him that until they find a cure that is safe enough to take, mommy just has to wait and deal with it and that she’s ok with it.

I hope I’m not an embarrassment to them.  My eldest told me once that he told all his friends at school that I wear a wig.  

Great.  This is going to be fun. 

But I didn’t get mad at him.  I knew he’s just a kid and he doesn’t quite understand disclosure and personal privacy yet.  Or minding others feelings.

So when the school bus comes I just wave and smile and think, “well shit, but who cares.  Life is wild and crazy.  These kids don’t really care about another mom anyways.”  

I went completely off track, sorry.  Back to the camping weekend.

It was so damn hot.  And very humid too.  

When it felt like I couldn’t take it anymore and my wig was gross enough, I decided to wash my wig in one of the shower stalls.

When I stepped in the shower stall, I noticed three things right away:

  1. There were no countertops.   
  2. There was a bench to sit on, but it was really dirty and gross.
  3. There was no mirror.

Fabulous. I didn’t know where to put my things.

As I’m scanning the room, I noticed there were some hooks on the back of the door.  

I was instantly grateful I brought a grocery bag with me so I can use the handle loops to hang the bag on one of the hooks. 

After washing myself and my wig, I stepped out of the shower, looking to put my wig down somewhere temporarily, but I forgot –  no countertops. Only a dirty and disgusting bench.  

I’m holding my ground and not putting anything down on that gross bench.

So I walked over to the door with the hooks and all my stuff hanging there. 

Then I realized what I have to do in order to make this situation work.

I’m gonna have to put my wig on one of the hooks as well.

I started looking at it and thinking how messed up all this was and how no one even knows what we go through sometimes.  

It looks like a wet rat just hanging there dripping.

I just want this whole weird process to be over with. 

I keep praying the lock on this door still works and hope no one knocks on this door right now given the very strange predicament I’m in.

As I reach for my dripping hanging hair – again super weird – and think about placing it on my head, I remember: “Oh yeah, no mirror. Great.”

I won’t be able to tell if I got the wig on right.

As I’m figuring out what I’m going to do, luckily I brought my hat with me. Thank god.

So I threw my wig on my head, tried combing my hair with my fingers and slapped on my hat.

I hoped everything looked ok.

Before stepping out, I made sure the sideburn hairs stuck out over my ears so it looked as natural as possible.

As I walked back to my campsite,  I went into our tent and zipped the door shut.

I tried to dry the hair as best as I could with a towel so I could apply the glue I need so I don’t have to wear this stupid hat for dinner too.

But the hair and the lace was still too wet for the glue to work.

Because there is never enough time, especially as a parent, I decided to just put the dumb hat back on again and try again tomorrow morning when the hair is dry.

When we went to sleep, I found a headband I could use to keep the wig secure enough while I slept.  I know my boys don’t mind, they’ve seen my wigs not fully glued all the way down before.

Nevertheless, it was a fun weekend.  We are back home now and trying to rest after an exhausting weekend with the crazy boys. 

So much laundry to do, so much unpacking.  I’m just going to do little bits at a time, and if it takes me a couple days before I complete it all, it’s all good.

Thanks as always for listening.  Until next time.

With love,

Jenna

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