the funny thing about unluckiness

i've never been one to regard CF or any severe chronic illness as a blessing. given that the overwhelming majority of babies born in the US are healthy (and thank goodness for that), the statistics plainly prove that being born with CF or any serious disease or disability is, in fact, rather unlucky.

i feel comfortable acknowledging the unluckiness of having CF. i also feel comfortable acknowledging the unluckiness of having CF and having a sister far more medically fragile and complicated than i am. annie can't walk or talk and she only has palsied and limited mobility of her upper body, but she is cognitively sharp as can be and emotionally deeply connected. annie also has a smile that literally lights up the room and a personality that, also literally, has made her probably the most beloved person i know -- with incredibly good reason.

the fact that annie and i both have serious chronic conditions means my immediate family of 6 is particularly unlucky on the health front. there's no self pity in this acknowledgement. i'll be the first person to acknowledge the plethora of ways my family is supremely lucky, but when it comes to chronic illness and disability, well, it is a fact that a 2:4 sick to healthy ratio is disproportionately high. (please note i only use "sick" for lack of a better collective term to group annie's conditions and CF together.)

all of this is a long-winded way of getting to what i actually want to write about, which is the single most important thing my personal and sisterly experience with sickness has given me...

...drumroll, please...

and that is --- priorities.

priorities that are deeply instilled, crystal clear and that i have felt profoundly in touch with from a very young age. priorities that have remained absolutely consistent for as long as i can remember and that have guided my life choices and path. priorities that i share with each of my immediate family members, who have lived every single pain and triumph of sickness and health alongside annie and me. priorities that fundamentally set us apart from those healthy babies and healthy families who, for the most part, live without substantiated fear of endless nights and weeks and months in hospitals, without fear of cardiac arrest, major surgery, catastrophic lung infections or advanced and progressing lung disease.

from the decidedly unlucky circumstance of knowing how tenuous and fragile life is comes clarity about what matters when stripped of everything else.

for me that is my family - my mom, my dad, coby, julia and annie. it is my role as a sister, a daughter, a role model, a confidante. it is not only sitting front row at coby and julia's tennis matches, but choosing to drive them to practice and stay to watch their admittedly-less-glamorous-but-surely-more-character-building skill development. it is poring over annie's latest accomplishment be it her recent progress with a communication device or her newly learned ability to blow kisses, which, i am proud to say, i taught her!

it is also my friends - my wonderful friends who make me laugh so uncontrollably hard that my stomach throbs in pain. it is my friends who spend hours upon hours at my bedside in the hospital to keep me company and keep my spirits high and love doing it. it is my friends who take it upon themselves to remember my upcoming doctors appointments and check in afterward to see how they went and what my next plan of action is.

it is health and happiness and fulfillment for me and my loved ones.

with all of that said, i would still trade my family's sickness quicker than a blink of the eye if i could. there's absolutely no doubt about that. i hate the pain annie has endured and the brutal suffering CF has brought and will continue to bring for me and my loved ones with every piece of my being. the only thing is, i can't.

trade-ins aside, the next best thing is to accept the unlucky reality and acknowledge the silver lining if there is one. for me it is the simplicity, decisiveness and clarity of my priorities in life. it may sound reductionistic to some, but i'm profoundly grateful that CF and my experience with annie's conditions have allowed me to live with a harmony and alignment from an early age that i think many people spend a lifetime pursuing.

that's the funny thing about unluckiness -- amidst all of the bad of a truly unfortunate situation, sometimes a good can emerge and it is okay, perhaps it is even healthy to admit and appreciate that good without compromising any of your vehement hatred for the overarching bad.

 
(one additional note: i actually wrote most of this post about a week ago. when i read the latest beautiful and poignant post by lauren at I Have CF... So What?!, i found myself nodding in agreement and smiling at the fact that us, CFers, are grappling with so many of the same complex issues and amazingly, although probably not coincidentally, often coming to the same conclusions. if you haven't read her latest post already, i recommend doing so!)