Like many other 24-year-old woman I enjoy a fresh coat of MAC lipstick, the perfect pair of ankle boots from Nordstrom, and a trendy handbag that has just the right touch of vintage flare. Like them, I crave a night out on the town with my best friend, get excited over scouting the mall for a new chunky sweater, and never fail to be thrilled by the perfect application of wing tipped eyeliner.
Reality is though, I have some pretty extensive differences -- just a few tubes, tanks, failing organs, and a fatal diagnosis of Systemic Sclerosis (Scleroderma) that will more than likely hinder me from reaching the age of 30.
But hey, underneath all that I really am pretty similar! Similar to those other girls you see at the make-up counter buzzing enthusiastically about their new brow pencil, or the date they had last night with that cute guy from the gym. (Except I am probably busy telling my neighbor about my last colonoscopy, or the time I had a pretty damn attractive heart surgeon... Just minor differences!)
Yes, I am that girl you see toting around an oxygen tank with a large feeding tube hanging out of her dress, resembling that of a walking hospital. (You know, like The Fault In Our Stars.)
When passerby see me out and about, I swear they think I am lost on my way home from the local emergency department. I don't receive the coy stares where an observer blushes and quickly diverts their attention. No, No, I get the horrendously obvious gawks that may send the poor, confused individual hurtling into the pole in front of them.
I cant blame them though, if I saw someone who looked like me I would probably stare too. Who am I to be offended by their awkward gape when I am guilty of the same crime? I have more than once caught myself gazing a moment too long at an eccentric hair color, interesting outfit choice or make-up fiasco. I know their stares aren't meant to be scrutinizing, but are born out of pure curiosity. I honestly do often look quite out of place.
I think what throws onlookers off the most is my evident normality in outfit, hair, and make-up. In many peoples minds, seriously ill patients are over the age of 60, live in hospice, and wear nothing but pajamas -- heaven forbid they throw on a coat of mascara!
I mean what would be the point? Dying sucks, why glamorize it?
It is a good question. A realistic question. Why glamorize this dying body? Why not have my outward appearance match the ineffective, and worthless organs that reside inside me? It would take a hell of a lot less effort on my part!
You have no idea how long it takes to cover up the permanent dark circles of an exhausted, under oxygenated, malnourished insomniac! I probably spend more money on color correcting under-eye pens than most people spend on their cars.
The truth is beneath my medically frail body is an average 24-year-old yearning to regain her shattered life. A woman just like you who wants nothing more than to enjoy a day of retail therapy she most certainly deserves. One who wants to feel confident in her body, even if it's failing her.
I still want to feel beautiful when I leave my home, and feel assured that my outward appearance reflects my personality. I never used to leave my house in grungy sweatpants with no make-up and disheveled hair before I was ill, so why would I now?
My fatal diagnosis didn't steal my disposition, it just stole my body. I am the same vivacious, stubborn, charismatic, witty, person I was before illness struck. The same woman who adored getting dressed up, or experimenting with a new pallet of eye shadow. The only difference now is that I am attached to life sustaining medical devices.
I am living life despite this disease, and learning to work with these new outfit embellishments I am forced to lug! (Most woman accessorize with shoes, I now have to accessorize with tubes!)
Be assured I have my shabby days, the days where I am too sick to even think about lifting my Kabuki brush; where my pink snowflake pajama pants and an oversized sweatshirt are my outfit of choice. Those days however, you wont see me because I cannot leave my bed.
The times you see me out for a date night with my husband, or at the local Target are the good days, the days I feel like a somewhat functioning human being. My pain scale has dipped to a rare below 6 out of 10 on the scale, and I may not have spent the entire morning confined to the restroom. (An infrequent occurrence.)
So yeah, while it is a lot of work, and looks downright unusual, I primp my dying body because it reminds me that I am still me beneath it all; that I am still that young woman in her mid-20s just trying to enjoy life.
It feels good looking into the mirror to see a polished face and a well-put-together outfit below my oxygen cannula, scars, and protruding tubes.