Kardashians, Jenners, Thigh Brows and ………Me?

A Year in Review

When I launched Comfortable in My Thick Skin a year ago, out-ranking Kylie Jenner’s thigh brows was not a goal I set for myself. In my wildest dreams, I couldn’t have imagined that my bare-faced photo next to Chanel White would have landed as #6 in Cosmo’s 2015’s Most Epic Selfies list. There we are though, sandwiched between #5-some lady soaring through the air on an inflatable orca and #7- Kylie Jenner’s thigh brows (yes, that’s a thing). Cosmopolitan labeled Chanel and me as, “The Original #Sclerodermaselfies.” Who would have thought that a make-up free selfie, an interview with Yahoo Canada, and a misunderstanding with the Facebook Ad team would result in my bizarre brush with fame? Not me. Yet, my bare-faced selfie was the topic of feature stories in People, Cosmo, Seventeen, and many other mainstream media outlets around the world.

viral slidefox news

Titling my blog, Comfortable in My Thick Skin, was more of a wish than a factual statement. Being a nerdy teacher to the core, I set objectives for this blog and a year later, am compelled to self-evaluate them. This will be even more fun than it sounds!

Objective #1 Raise awareness for scleroderma      Assigned Grade- P (progressing)           Surely, all the media coverage the Face Off For Scleroderma #sclerodermaselfies campaign garnered elevated awareness for scleroderma. I will forever be indebted to the army of friends, family, followers, and strangers who propelled the movement forward and continue to share my blog posts and articles on social media. Without you, I would be writing this for just my mom, sister, and me.

Objective # 2 Promote self-acceptance and inspire people to redefine beauty         

Assigned Grade- P (progressing)  tumblr_inline_n5oxuvcPuC1qkifb8

The optimist in me hopes that the Face Off For Scleroderma movement and other articles I’ve written on this topic have allowed for reflection on how we define beauty. I want to believe that the campaign brought people a tiny bit closer to not equating their self-worth with their reflection in the mirror. Then, the pessimist in me rears its ugly head. Which brings us to my final objective.

Objective #3 Feel Literally and Figuratively Comfortable in My Thick Skin.   Assigned Grade: I know traditional letter grades aren’t in vogue right now, but no euphemistic ‘P’ can encapsulate this one accurately. To be generous, I’ll give myself a C minus.

An outsider may say I deserve an ‘A’ in this category. After all, I conquered my 30-year fear and went out in public without makeup, my bare-faced selfie went viral, and thousands of people posted their make-up free photos on social media. I could end this post here with a big hip-hip-hooray and write something stupid like, wow 2015 was amazing, I can’t wait to see what 2016 has in store! Many of my drafts ended with this gag-me-with-a-snow shovel sentiment. But when I started this blog, I committed to being authentic and honest. So here’s the truth…

Reasons Why My Blog’s Title; Comfortable in My Thick Skin is a Giant Load of Crap

Finger

On the most literal level, it is impossible for me to be comfortable in my skin. As a scleroderma patient, that’s an oxymoron. Even as I tap on my keyboard, my fingers are throbbing from the open ulcers that are leaking calcium into the bandages that I adhere multiple times a day. My Raynaud’s Syndrome is flaring and I will take a writing break soon to run my purple hands under hot water and wrap them in a heating pad.

From a figurative standpoint, I am still not comfortable with my reflection in the mirror. But what about your whole “embrace your face” #sclerodermaselfies campaign? I never thought the bare-faced selfie I posted on my blog was going to go viral. I was scared sh**less to post it when I thought it would be shared a few hundred times and then go up to that big cloud in the sky where all my other posts go to die. If I had known that the Facebook Ad team was going to reject the photo and it would ignite world-wide attention, I would have in the very least taken a better selfie. Every time I see it, I cringe and think I look like I’m posing for a mug shot. What was my crime? Wearing crazy weird hair clips.

bare face

Since the viral #sclerodermaselfies movement, many people have written to tell me how brave and confident I was to launch the campaign. I politely say thank you, but here’s the real 411……

The week leading up to our live August 9th Face Off For Scleroderma launch, I was a hot mess. My friends were at my house around-the-clock spoon-feeding me peanut butter (that’s a slight exaggeration, but you get the point).  I not only was trying to organize a social media campaign, but, due to insanity, also decided it was the perfect time to release my memoir, Does This Hospital Gown Come With Sequins? on Amazon.

Cover on amazon

As my friend Amy drove me to the launch party that Sunday in August, I released 30-years-worth of pent-up shame, rage, and denial. To poor Amy’s dismay, uncontrollable barbaric sobs came pouring out of me. An hour before everyone was set to arrive, I was locked in an office with my friend Michele, who was practicing my speech, in case I was unable to read it myself. I sat in a chair weeping while repeatedly declaring, I can’t do this, I can’t do this.

Here’s the thing though, I did do it. I did this live interview with ABC News just minutes after I was slumped in a chair consumed with self-doubt. cwvDm9asA_Lw9YsGTQNy8vWzhk4

I don’t like saying, ‘I did it’ because I didn’t do it alone, which makes that statement inaccurate and egotistical. But do any of us ever experience triumph without support? Are any of us ever 100% confident in our appearance, or with giving a speech, or going for that promotion at work? Does anyone look in the mirror and say, ‘damn every inch of me is perfect from head to toe’? Perhaps what makes us truly comfortable in our own skin is having fear, doubt, and insecurity, but then going for it anyway. I don’t think we’re meant to be completely comfortable with ourselves. If we were, we’d be a bunch of conceited, self-obsessed, A-holes.

I know 2016 will be another year where I am both literally and sometimes figuratively uncomfortable in my weird, thick, splotchy, deformed, scleroderma skin. And I’m okay with that, because I’ve made more growth in this area in the last 12 months than I had in the previous 40 years. I hope all my readers keep taking risks, reaching for dreams, and stepping outside comfort zones. We make the world a more dynamic place when we think something can’t be done, but then, despite our apprehensions, do it anyway. So, here’s to 2016- may it be a year where we all achieve something we thought was impossible.

EP Hannah

EP crowd

Disclaimers:

  • As I mentioned in my post, Doogie Howser Melts Away My Pain, my scleroderma symptoms are trivial in comparison to undergoing chemotherapy, waiting in the ICU for a lung transplant, or being on a feeding tube; circumstances that many scleroderma patients sadly face.

 

8 Comments »

  1. Once again you have shown us what an incredible, brave and honest women you are. I am proud to be your friend. May 2016 bring you much joy, fulfillment, and good health.
    Love, Franny

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  2. Hi girl friend! You never cease to amaze me. I’m sorry I didn’t make it to the Zumba fund raiser. Please send me the amount for the entrance and the correct foundation to which I write the check. I will bring it to our next meeting.

    You are an inspiration not only as a fellow patient but also to help me put in perspective getting older. I just turned 70 and have had moments of comparing my body, etc. to how I looked in my 40’s. Not a healthy thing to do! It’s an attitude adjustment for sure😱 Looking forward to seeing you in January. May you and your family be richly blessed with good health and peace in your hearts in 2016! Love and hugs, Mary xo

    Sent from my iPad

    >

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  3. Once again you have moved me to tears with your beautiful writing. You are honest, funny and one of the bravest people I know. Happy and healthy new year to you and your family.

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  4. Love you, your blog, your thoughts, your empathy and your amazing sense of humor.Laura will see you at the beginning of February, but don’t forget some time for me at the end of February. Here’s to not being completely comfortable in our skin another year – 2016! Your grade = PP perfectly passionate!

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