TEAM RACHAEL! has been a thorn in my side for ages, trying to get me to contribute to their precious newsletter. While you are probably fainting from the shock of me not jumping on the opportunity to talk about myself in a printed form, you will permit me to explain why I was reluctant for so long.
You see, I'm supposed to write about my life with a CHD and how it's shaped me as a person, or how I've managed to overcome trials and tribulations to achieve my goals and yadda yadda, cheese, cheese, fluff, fluff, fluff.
On average these newsletters feature patients with families, children of their own, and/or a spouse, and/or a deep enough level of comfort talking about their profound relationship with The Lord that I find unnerving. I have none of these things in my life, and felt uncomfortable being put into such a spotlight where all I could talk about was traveling, a failed career, struggles of a new career, my vile felines, and, like Napoleon on his exiled island, how shamelessly bombastic I am with a piddly little blog. I am not a hero; I don't consider myself to be an inspiration to anyone, nor a wealth of guidance beyond where you might find a good bite to eat in Cork City, Ireland.
However, they kept persisting and I finally caved in. For an embarrassing amount of time I wavered between having no creative flow, to sparks of zealous mania, which I would lose as soon as I emailed TEAM RACHAEL! to tell them I'd found my inspiration, gird their loins and EXPECT BRILLIANCE!
Finally, I found enough momentum to see me through to the deadline and I scraped by. A couple of my friends have told me they dig it, but they're my friends and that's what I pay them to say.
Long story short, I was one of the three women featured in the fall edition of the Ahmanson/UCLA Adults with Congenital Heart Disease Center's newsletter. They sent me a .pdf and said they're working on an online edition, which 'should' be up next week. I don't have that sort of patience, so below is what I wrote for them on my life with congenital heart defect.
There is a fine art to maneuvering through life with a complex congenital heart defect, and while it’ll be a while yet before anyone starts calling me Rembrandt, I do all right for myself. Born with transposition of the great arteries and ventricular septal defect with a heart that sits center-right stage (we’re kind of a showboat), and has gone through both a Fontan operation and a pacemaker, I am not your typical cardiac patient. I’m slightly bombastic, a bit cheeky and more than a dash vainglorious. Thirty years of being poked, prodded, studied and talked at has left me just a touch defensive and I have worked tirelessly to construct a perfectly hardened exterior.
I struggled greatly to come up with a topic to write about because the possibilities seemed endless, with the only goal being that I didn’t want this to wind up being a piece of fluff, painting an image of myself I do not necessarily resemble all of the time.
On one hand, I wanted to be irreverently humorous, something I can excel at given the right mood and circumstance.
Making people laugh has been a not-quite altruistic goal of mine, as I use laughter to deflect the seriousness of my health. Even amidst my first full-blown episode of tachycardia, which occurred during school hours in the first grade, I was cracking jokes as the nurses office became ground zero of frantic phone calls, panicked voices and forced calm for my benefit.
Yet another direction I debated was that of profound earnestness; philosophizing the various coping techniques my peers and I adopted, my own being in the form of a blog. It is easier to mentally digest the chaos my life can be caught up in when I have an outlet to, pardon my crudeness, vomit up my emotions. All of the preposterous, hyperbolic, vindictive and utterly raw thoughts and feelings I possess have a special place of their very own. It may not be agreeable for some, but for me it’s the ultimate catharsis.
Waffling between these options has forced me to accept and now openly admit a hard truth; a truth I realized once I started volunteering with Camp del Corazon and again when I attended the ACHA conference last year. I keep up the hardened exterior to mask my vulnerability.
Not unlike a wounded tiger, I sit alone and surly, watching the rest of the jungle from my dark corner, the façade of pride and judgment. I want to partake, not just the philosophizing joker with a bag of tricks designed to twist your attention from my wounds, but keeping a certain level of detachment has helped me not let my CHD define me as a whole person.
So maybe I’ll spin a grandiose tale about butting heads with a medical official, or repeat something funny that transpired with TEAM RACHAEL! (my medical entourage), but you may not see the true depths of my grievances; the isolation of my childhood, the struggles of a teenager who could not rebel even as her friends did, the young adult who struggled to find her footing in adulthood, and the woman who continues to mourn the loss of her uterus despite not living with regret about making the choice to have it removed in the first place.
No, you won’t see these things because I am too quick with my slight of hand. Did you see what I did there?