The Beginning

This is my new year’s resolution. A blog, to catalog the thoughts that clutter my mind, that keep the hamster wheel at full speed and that at times prevent me from moving forward. This is a blog to find myself, to tell my story despite the compelling need I feel to share the stories of others. This is a journey of my thoughts and memories that I have until now kept inside. This is my new year’s resolution to help me cope, to reduce my stress, and to come to terms with so many events of my past. This is what I struggle with, what I live through, what I love through, and what I breathe through. This is my life as a woman, partner, friend, advocate, cousin, daughter, sister, patient, student, supporter, victim, and survivor. A dandelion child that so hopes to be a sunflower, to stand tall and remain with her face toward the sun, despite the impending storm. My life is only beginning, the excitement, the joy, are all still yet to come. This is a recent realization that had been previously clouded by the pain and sadness and loss of previous years. It is a realization that has excited me and at the same time brought on immense guilt. I am the happiest I have ever known to be, a feeling that I did not know existed, I have set my career path to be everything and more than I could ever have dreamed of, I have found love that most people are not lucky enough to experience, and I have seen the light at the end of the tunnel. But I have all this without the two greatest influences of my life, without my most adored, most admired, most loved, cousins, whom I watched struggle and fight to breathe, but never struggle and fight to live and love. The loss of these two beautiful women is something that I cannot explain, the mark they have left on my life and my devotion to them is unwavering, and the fact the orphan disease of cystic fibrosis has wholly consumed me is undeniable. They are where I lay my head to rest, they are how I cope with the many roles I play in life, and they, their lives and love, are my saving grace. This is my story, one that deals with the aftermath of loss, with the pain of abuse, with the struggles of illness, but most importantly with what can bloom from adversity and with the beauty of love. And this is only the beginning.

I wonder what type of response this will get or if I will even gather the courage to share it, but I am devoting myself to this now and will write a minimum of one entry a week, in hopes that my mind will become less cluttered and my heart will become more open. 

I struggled with the fact of new year’s, with trying to comprehend where we all were a year ago, and where we are today. Where was I, what the hell was I doing, and how, how did I end up where I am? 

A year ago, I was in shock from the death of Jennifer just 6 weeks earlier, I didn’t know that 3 weeks from then two more CF angels would lose the battle with their disease. I didn't know so many lives would be saved by lung transplants, a group of friend defying ALL the odds. I didn’t know how unbelievably heartbroken it would make me feel to find out that Tina had died, one day after Tom, I didn’t know that I would cry for hours going through her photo albums, looking at all of the pictures of her and her beautiful little girl. I didn’t know that her passing would only further encourage me to pursue work in cystic fibrosis. I didn’t know that I would end up working at LIJ side by side with the amazing team that cared for my two beautiful cousins, for Tom, and for Tina, and for so many other CFer’s that I would quickly come to care about and love in ways I didn’t know possible. I didn’t know that I would be asked to work on an End of Life project, or that my cousin Jennifer would be included in the data set I would analyze, and scrutinize for hours, until I came to know and grieve for the 69 individuals listed there. What I thought, at that point, was that I would barely make it through. I didn’t know if I would be able to cope with the loss of my cousin, I didn’t think I would be able to erase the images from my mind of the last hours of her life, while she struggled to breathe. I didn’t know that I would come to absolutely treasure that memory and to see the beauty of that moment, and to feel the absolute love that filled my body and hers as she passed into another world. I did not know that this memory that this moment would inspire me and give me a unique understanding as to what end of life care needs to be, or that this would land me on a flight to Anaheim, California for the North American Cystic Fibrosis Conference, where I would present on Advanced Care Planning alongside Jennifer and Marissa’s doctor. I did not know that my experience working at LIJ would change my career path and inspire me to be a nurse. And I did not know that I could find such happiness and such beauty, and such an absolute sense of belonging out of all the loss I had experienced. Nor did I know that I could believe in myself to actually make such a profound difference.

A year ago, I was dead tired, exhausted from an overnight emergency room visit to address my excruciating stomach pain that had landed on the floor feverish, and covered in hives. A few doses of  dilaudid and some saline through my IV, an abdominal CT scan, and recommendations to follow up with a gynecologist and a gastroenterologist and I was out the door. This was not unfamiliar and was as frustrating as the first time this had happened 5 or 6 years ago. I did not know that this would haunt me, that I would continue to feel sicker and sicker, with no refuge. I did not know of the support I would get from a handsome young man who was offering to drive down from Quebec to spend New Year’s Eve with me despite only have known each other for a few months. I did not know that I would spend a week in the hospital in Binghamton, New York, being sent home from the ER on Saturday with a diagnosis of abdominal pain, after another abdominal CT scan which showed no kidney stones, which was my original diagnosis, only to find myself back in the ER Tuesday night with what was first called a virus, for which I should increase my fluids and rest, which was then a kidney infection, which was then quickly a pulmonary embolis, which called for a chest CT, which told us that there was not “a small blood clot in the bottom of my lung”, which lead us back to kidney infection, which became a kidney stone, which became a kidney infection, which lead to a 4 day stay in isolation, an array of broad spectrum IV antibiotics, and a discharge note with no definite diagnosis. I certainly did not know that the handsome young man who was going to drive all the way from Quebec would sit by my side, advocate for me and love me throughout this adventure. I did not know that my patience would be tested as doctor’s played mystery diagnosis on me, not being shy to explain the worst case scenario but neglecting the best case scenario, and then giving up when their first guess was wrong. I didn’t know that I would have to struggle to find strength in not knowing and continue to pursue my dreams despite a lingering unknown prognosis, illness, pain, weekly injections, and overwhelming fatigue. A year later, I still struggle to do this.

A year ago, I was just beginning to feel the flutter of a heart in love. I had been so heartbroken and tormented by my previous relationship and had really no interest in starting a new one, I wasn’t looking and I didn’t even particularly want one. But somehow it happened, as I’ve heard love does. I did not know that Ian and I would move in together, would grow to understand each other like no other individual can, and grow to love each other like neither of us thought possible. I did not know that we would adopt two adorable kittens and create a loving home for our little family. I did not know we’d have a real Christmas tree, or that we’d host weekly lab meetings, that we would get to share the holidays with each other’s families, that he would believe in me no matter what I wanted to do, or that he would be my biggest supporter or that we’d plan to live our dreams together. I also didn’t know I could possibly be this cheesy. I definitely did not know that I would be skiing on Mont Sutton with his sister and her boyfriend. I did not think that I would spend my new year’s this year with Ian in our apartment with our kitties, making meatballs, eating chocolate cake, and drinking red cat and champagne at midnight, I would not have guessed that it would be a wonderful new year’s. I also didn’t know that I could experience happiness or love like this. 

I was grieving, feeling lost and a bit alone, I found better ways to use my energy, whether it be sadness grief or anger, I am hoping to put it to good use. I was tired of being sick, and still am, but I do not succumb to it, and I don’t really fight, I will learn to live with it, and to overcome it. 

I was loveless, and I am now filled up.

And, this is only the beginning.

Between two lungs it was released, the breath that carried me.