I Posed in a Bathing Suit For An Awareness Campaign and My Face, Scars and Tubes Were All Over The Internet

Just because I’m sick doesn’t mean I’m a good person. I’m sort of an okay person.
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Publish date:
August 14, 2015
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Tags:
issues, cystic fibrosis, chronic illnesses, Salty Girls

I am completely and utterly sick of being sick.

Being a chronic patient is a simple fact of my life, and one with which I have very little control. After a rather extensive stomach surgery this month, which overcame a Lohan-level breakdown of my pancreas, I couldn’t be more excited to be home and starting the long road to recovery.

Recovery basically entails subsisting on baby-food for a few weeks, and wanting to sucker punch anyone in the face who dares to eat pizza in my presence.

Fortunately, recovery is something with which I’m enormously proficient, since surgical intervention, intravenous medicines and bionic body parts are an everyday reality for me.

As it stands, I am more terminator than Emilia Clarke (but she’s hotter): I have a portacath implanted in my chest, a feeding tube between my ribs, a glucose monitor stuck in my arm, and enough oxygenating paraphernalia to fuel a Rolling Stones reunion.

However, if the hospital is good for anything, it’s for granting perspective. So many of us get into the mode of self pity, but being sick of being sick makes it easier to listen to the narratives of those around me.

For example, as I was trying to relearn how to swallow as an inpatient (I know, I know, the Nixonsonian/Deepthroat jokes are just too easy), my Ukranian-born nurse was worrying about her one true love recently drafted into their war against Russian. By comparison, the free pudding and bed-avec-remote-control is really not too shabby.

Unfortunately, most of us don’t have a lot of perspective when it comes to illness, and and until a few years ago, this included me.

As someone who was diagnosed with the rare disease cystic fibrosis later in life, I received the same treatment that most of us encounter in the empathetic, open-minded, American medical system: 75% of professionals think you’re crazy, 15% think you’re just a woman, and the remaining 10% want to throw narcotics at you until you stop talking altogether.

It may be worth noting that most of my life-saving medications cost a $1,000 a bottle, while the aforementioned narcs are roughly $0.

Upon diagnosis, we realized that my lungs, liver, sinuses, heart, pancreas and digestive system all had taken such a monumental and irreparable hit, that even my hearing was long gone. Yes, I am now profoundly deaf.

A baffling paradox occurs when one is in the hospital for an extended period of time in which A) you cease to exist to the outside world all together, and B) you get too much attention for the wrong thing.

Listen guys: Having shitty organs takes literally zero talent. If anything, it’s sort of a personal flaw.

So… perhaps now is not the time to tell you that I recently posed in a bathing suit for a photographic series called the Salty Girls that swiftly went viral, and my face, scars and tubes were all over the interwebs.

I did it mainly because I wanted to trick my fraudulent brain into practicing what I’m preaching.

The entire concept of the Salty Girls campaign -- created by photographer Ian Pettigrew -- was for women to embrace their anomalies and showcase their flaws in a beautiful light.

Do I feel sexy and empowered when I’m at least 90% derived of pure mucus? Not very often, no. Do I want to embolden my little girls to accept their physical faults, and feel alive in their own bodies one day? Yes, of course.

Was I somewhat weirded out by the fact that I received more attention in 24 hours for showing my body, than I have in all 28 years of my writing career for my mind? Undoubtedly.

When it came to penning my own sickness story, the only thing I could think to write about was how much I want to be defined for more than my disease.

Any time someone compliments me on my bravery, I always want to say, “Yes, but I’m a semi-Buddhist who kills spiders and then parades around my house celebrating their genocide.”

If another calls me inspiring, I want to add, “Yes, but I fantasize about Ruby Rose and Aydian Downling, congruently, while snuggling with my husband.”

Unearned praise for innard failures can be awkward. Just because I’m sick doesn’t mean I’m a good person. I’m sort of an okay person.

The majority of us need encouragement for our many battles in life, and for that, I’m always grateful. Frankly, my battle is not any greater than anyone else’s… it just has a lot more snot, blood and constipation.

I continually find myself on the quest to become the elusive and non-existent “perfect patient.”For no clear reason, I have somehow put it upon myself to be as positive as possible, to make my doctors laugh, and to never be the overly dramatic stereotype with which I fear.

And even with the self-imposed pressure to be the least whiny, Walk to Remember ever, you’d be shocked at how many still point their judgmental finger, and take issue with how you handle your own hurdle.

Of course I wish that I was a better patient, or more of an inspiration overall, but honestly, I don’t have a choice because this is just my life.

In the end, I am truly not my digital image. I am not my body. I am not my pain. I am not my illness.

If I could be anything in life, in fact, it wouldn’t be my photos or battle wounds or tribulations… it would be my words. They may not always be perfect, but they are always mine. Photos fade, looks falter, and innards fail, but words are always with us.

And hopefully with them, we have just a little more perspective.