15 May 2015

Ichthyosis Awareness Month - Denise's story: "I got tired of wanting to hide."

This post is definitely up there with one of my favourites! Denise writes about how she got tired of hiding her skin and decided to have pedicures and wear sandals. She also writes of the importance of letting go of the self consciousness, because it's freeing. She's let go of her personal hangups, and doesn't worry how she might make people react to her skin - because most people aren't worried about someone else's skin. She's chosen to surround herself who don't pause when they encounter her - and that's so valuable. Denise has Lamellar Ichthyosis and is in her 30s - married with a toddler. 

Meet Denise.

"I am the second of five children, and four of us have lamellar ichthyosis. To my knowledge, no one on earth has given birth to as many kids with ichthyosis as my mom. My parents are carriers and do not themselves have ichthyosis. Hence, I give you my first point:

My Mom Is Incredible

It was the 80’s – resources were scarce and slow: no internet, no FIRST, no Facebook groups. But she sought out the right treatments, mostly by trial and error—and huge amounts of love and effort. She traded out her wedding ring with diamonds for a plain band that wouldn’t scratch us or collect Eucerin.

She kept having kids, with no fear of having more with ichthyosis. I’m so glad she did—the most comforting thing growing up was having three siblings to identify with me.

We didn’t have IEPs or 504s then - these are modern, formal documents to ensure accommodations for Americans with special needs.  My mom taught us to speak up for ourselves and that ichthyosis was never to be used as a handicap. No one in our generation was bubble-wrapped—there we no special conditions for anyone that I remember. I’m grateful for that, because I was the sort of kid who would have used any possible excuse for special treatment.

At age 6, I corrected a stranger:

“Actually, I have ichthyosis. I’m not sunburned.” Call it mainstreaming, normalizing, whatever you want. It worked for me.

The Scary Stuff: Sandals and Pedicures

Teenage years are harder. All anyone wants is to fit in, and having what feels like such a visible difference can be quite an emotional hurdle. I would fill with dread when it came time to shake hands at mass, go to a pool party, or even wear our school’s navy blazer, which by the end of the assembly would be covered in flakes announcing that I was different. Indeed, ichthyosis makes you stick out in all those situations. I wanted to opt out, but it was high school and in most cases I couldn’t.

Later, near the end of college, I got tired of wanting to hide. I realized most human beings are so concerned with their own shortcomings that they literally do not even notice my skin. I started to let myself get pedicures and wear flip-flops. Sure, it takes me an hour to prepare my feet with scrubs, pumice stone, razor shaver, even a Dremel drill, before going to the salon for a half hour pedicure, but it’s empowering to have pretty toe nails. Even if it means putting up with rude remarks in the salon, thinly veiled in a foreign tongue. My mom found one kind, understanding pedicurist for us and we went to her for 10 years. Now I’ll walk in and make a stranger deal with my feet. (IDGAF.)

Yoga: The Final Frontier

In college I did yoga videos at home, and at age 25, I finally started going to yoga studios. I’ve been practicing in studios for 6 years now, and it brings be strength, clarity, and flexibility. It’s still not easy. I get uncomfortable with new teachers and lots of new students…after all, you never know how hot they are going to keep the thermostat (please don’t make me pass out), if they will touch your hand or foot to make an adjustment (gulp), or how many times you’ll have to stick your bare foot in a stranger’s face (sorry, neighbor). Yoga studios might be the scariest, most self-conscious places on the planet for a person with ichthyosis. Yet, it’s not even about overcoming ichthyosis—it’s about not missing out because I found the right teacher. (I don’t even care when he touches my feet. He’s kind of like my mom, but with yoga.)

Some with ichthyosis truly face a life with many physical limitations. I am lucky to have a mild form. For me, most limits are mental. I know I’m different and I accept it, whereas most of the world is still stuck on the first part and I have to deal with that. Specifically, I don’t like making people pause. In the pause, I imagine judgment, disdain, concern, curiosity, pity…distraction.

The best thing about being an adult with ichthyosis is surrounding yourself with people who don’t pause. I have a loving husband who apparently doesn’t notice that I sleep in surgical gloves and a chemical peel, and he has seen and felt my skin in every different state of terrible it has. My son, 28 months old, has the purest, softest skin, and he doesn’t look up and question why mama’s hands are scratchy.I ’ve been real with my friends and my yoga teacher, and they’ve rewarded my scales and flakes with indifference, which, oddly, is the best I could ask for.

Sure, I still dread making people pause. But I try not to hold my life back for fear of discomfort or judgment. I shake the hands of new people in business, and I find that I can maintain the (literal?) upper hand by looking them right in the eye and claiming that beat when they pause, wondering why my hand feels that way. They must think “What confidence!” Or “How weird!”

Either way, I’ve owned it and made it clear it’s not a handicap. (Turns out,Mom was right.)

1 in 200,000. Empathy, humility, and courage: awarded at birth and holding strong on gene ABCA12 for the rest of my days."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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