VF in the News

Kathryn’s Story

My name is Kathryn.  Is it true, like Robert Frost said, that “Nothing gold can stay”? Must “Eden sink to grief”- can happiness ever last? I thought, at 20 years young, that I had conquered whatever it is that controls our lives- fate, destiny, the stars… During my Junior year at Iona College in New Rochelle, NY I had everything a girl could ask for. I was actively involved in a number of clubs, in the student government, I had perfect grades, perfect friends, everything was going according to my “plan”.   Then the world’s heaviest, most hideous and unthinkable wrench was thrown into those perfect plans. In February of 2009, my father died, suddenly and unexpectedly; and after seven years of not speaking to him, I had no idea what to do, where to go, how to feel, what to say… Gone. In an instant. It is a strange feeling, to wish that you can fight against finality, against reality… and fight I did to no avail. There were so many words left unspoken between my father and I, so many apologies I wished I could put forth as a peace offering. But no matter how hard I tried, no matter how violently I cried, begged and pleaded, there was nothing I could do to bring my father back. One single moment was all I asked, and there wasn’t anyone who could give it to me.

It seemed to me that life couldn’t get much worse. But of course, it did. I knew that something else was wrong, very wrong. It’s just like that sinking feeling you get in a horror movie right before the psycho killer hacks the unsuspecting victim into a hundred bloody chunks with a chainsaw. All bets are off- there are no rules, no laws, everything is out of your control.   I hadn’t been feeling well since December 2008. I had seen three different ENTs to try to figure out why I couldn’t hear. No one could give me an answer. After my father died, I started having trouble breathing. More doctors visits were scheduled, as I was diagnosed with everything from chronic otitis media to pneumonia to asthmatic bronchitis to depression. By March 2009 I had seen two general practitioners, three ENTs, and a pulmonologist. Finally, one ENT listened to my symptoms (which had been raging out of control for almost four months), and without even examining me told me that he thought I had something called Wegener’s Granulomatosis. I mentioned it to my pulmonologist who finally sent me for a CT scan of my head and chest… then ordered a biopsy of the masses in my lungs that had been revealed on the CT… and the next thing I knew, after a week-long stint in the hospital, I was being diagnosed by yet another doctor, (a rheumatologist this time) with a rare, incurable, auto-immune disease that had to be treated with chemotherapy and steroids.

I didn’t care. I was so relieved that I finally had a diagnosis, even if I couldn’t pronounce the name of this strange disease. Then my doctor forbade me from returning to school until he gave the all clear- and I had a hissy fit in the doctor’s office. I didn’t care that my life been turned upside down and inside out, but to not be allowed to go to the only place where I had felt like I was making a difference- the ONLY place where I wasn’t afraid to be me? That was what hurt the most. But I stayed home, and I watched as my hair fell out, as my face and body became puffy and bloated from the steroids, as I heaved into garbage cans as the chemotherapy “worked”. I watched my life go by, knowing that I couldn’t even sit up in my bed because the pain in my lungs was so fierce, so persistent that I screamed “Just.Let.Me.Die!” on a regular basis-I realized how much I had taken the simple act of being able to breathe for granted.   I counted down the seconds, the minutes, the hours, the days, the weeks until I had permission to go back to my normal habitat. My waking hours were spent in agony, as my guilt stricken heart was wracked with the inevitability of thinking about my father, about my life, about how every plan I had for the future had been shattered into a million, tiny little pieces.

Thirty-eight mind-numbingly long days later, I stood in front of my bathroom mirror, putting on whatever make-up I could find that would make my eyes look more open, my cheeks rosier, my smile brighter. That doctor’s appointment was my only shot at the elusive get-out-of-jail-free card, and I was tired of waiting for my body to throw doubles on its own. I arrived at the doctor’s office, and my heart started thudding in my chest, dangerously close to exploding. My doctor scribbled some things in my chart, flipped back to old blood labs, test results, cat scans. In my most stubborn and obstinate voice I declared that I would be going back to school, no matter what anyone said. And then that elusive moment that I had been counting down to finally arrived with a cautious permission to go back, with warning after warning to “take it slow”.

Fifteen months after my diagnosis, I walked into the grandeur and across the brightly lit stage at Madison Square Garden, a Summa Cum Laude graduate with a Bachelors of Science Degree in Childhood Education. As I took stock of where I was and who surrounded me, I realized that I was surrounded by the people who pushed me, pulled me, supported me, and simply helped me to become the strong, courageous woman I am today.  I know who I am, who I’ve become, who I’ve chosen to be in this life, and I absolutely intend on leaving this world a better place simply for having known me.

Since my diagnosis, I’ve become an active participant in bringing awareness to Vasculitis diseases. I’ve organized fundraisers and walks at my alma mater, which in the past two years have raised over $4,000 dollars. Being diagnosed with Wegener’s Granulomatosis taught me to appreciate life, no matter how many twists and turns there are on this roller coaster ride. I’ve found so many wonderful friends on Facebook who continue to support me as I move through my diagnosis and come to terms with living with something I never asked for. I can happily say that my prognosis is good- I’ve responded well to treatment and I continue to take care of myself so that I can live a long, happy life. Happiness is something I can choose. While I am “normal” and happy most days, sometimes I am upset, and occasionally miserable- I always remind myself that I’m alive.   Sometimes, that is the only thing that gets me through the darkest of days.

My graduation speaker, Dr. Abigail Disney told us during commencement that “Everyone of us walks the earth by virtue of a thousand moments of grace, both large and small, most of which we barely notice.”  She told us that we were answered prayers, and truly, I am.  Selfishly, I could claim those moments of my graduation all to my self, but I won’t.  That moment was as much for me as it was for my family, my support systems, and above all, for every single person in this great wide world suffering through rare, chronic, and incurable vasculitis diseases.  I am a shining beacon of light, bright enough to guide even the most distant and lost soul home.  And every morning as I rise, ready to take in another day and celebrate my courage and my perseverance, I know that I am the brightest and most illustrious light in the entire world.

Published: May 2011

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