The Life and Love After Loss

This weekend a year ago was a nightmare for many people, Tom Nevins and Tina Collotta, two best friends, lost their battle with cystic fibrosis.  This weekend a year ago also represents for me a turning point in my journey, my recognition of life beyond loss. It represents my dedication to the fight against cystic fibrosis, my passion for it. This weekend this year, we are faced with yet another nightmare. A beautiful young woman Kristi Moats, lost her battle this morning. She was waiting for a double lung transplant. She fought a very hard fight always remaining positive, honestly sharing her story, and offering advice to anyone who needed it. She kept a smile on her face and hope in all of our hearts. Her beautiful spirit and her happiness will shine on and she will be forever missed. I’ve only known Kristi for a short time, she invited me into her life through Facebook and her story and her optimism have inspired me. I know that some of the people I know, friends and family alike,  think that these relationships are somewhat superficial, that these are people very distant from me, that I’ve only known for a year and even that relationship has never been in person, but these relationships, these friendships are anything but superficial, they are real. These individuals have opened their arms and welcomed me in to their lives; they have shared more intimate details of their lives with me than some of my oldest friends. We share a common thread, we share a connection that means more than words can explain. These individuals whom I only know through Facebook, through shared stories, and experiences, through pictures, and through ups and downs; are close to me, they are people that I have connected with across the country and across the world, and there is bond a there, whether we can all understand it or not. Their lives, their stories, their friendships represent my passion for cystic fibrosis. Having been invited to share in their lives, to share in their troubles and their joys makes me even more sure of how hard I have to work to make a difference for the CF community. Feeling their warmth and kindness through short messages, long conversations, or a few words of encouragement has shown me life and love after loss, it has allowed me to continue my relationship with cystic fibrosis and in fact make it stronger. And I really couldn’t imagine it any other way.

My relationship with CF begins with Jennifer and Marissa. They are undoubtedly the most influential people in my life. But my relationship to CF does not end with Jennifer and Marissa, it does not end with the loss of these beautiful women, it doesn’t end. I first grew to learn about and understand cystic fibrosis through their story, through their lives, their medications, their coughs, their vests, their home IV’s, their doctors, their hospital stays, their everything. And I really wasn’t capable to see beyond it, we were all so full of love for them and so full of pain for them. My heart broke like it never did before and like it never will again when Marissa passed away. I was 16, had just taken my stupid chemistry regents (I still resent the subject) when my mom picked me up from school, I figured we’d head to LIJ but that’s not where we went. Jennifer and Marissa were both at LIJ, I had been there just a few days before, spent the whole time in Jennifer’s room on the 5^th floor because Marissa turned into Medusa when she was sick and didn’t feel up to seeing anyone. That day Jennifer went up to the ICU to convince Marissa to be intubated, to allow her body to rest so she could regain some strength. Marissa made Jennifer, as Marissa always did, promise to do something for her. Get listed for transplant, get a transplant, and do all the things she wanted to do but hadn’t done yet. Marissa wasn’t able to regain strength and on June 21^st 2006 she passed away. My Aunt Kathy told me while I sat in her lap, the two of us crying together and Jennifer sitting at the dining room table with the home care nurse setting her up with IV meds, that Marissa asked for us not to be sad, she said that she was happy, she had led the life she wanted, and done more than she ever thought she would. Over the next few days we would spend hours going through pictures to display at the wake, Cheryl (my beautiful sister) and I would tape them to the poster board, with Jennifer resting her head in either of our laps, telling us how her and Marissa had talked about this, they knew that they wouldn’t grow old to be like Aunt Kathleen or Grandma (Aunt Kathleen passed away a week later, and my Grandmother just turned 85 in December) but she didn’t think it would happen yet. I think I cried for an entire week straight, I didn’t sleep at all, I remember being awake at 5am sitting in the living room watching Barney, maybe it was an attempt to comfort myself… it didn’t help and I’ve never seen my eyes so puffy before. The love that I had and still have for Marissa is never-ending, she was my greatest hero, I wanted more than anything to grow up to be her, to be funny, and warm, and kind, to give great hugs, have a perfect Pinky and the Brain impression, know all the lyrics to every Dave Matthews Band and  Phish song, to always win Scattergories, to eat candy and  ice cream like no one else, and to love and give, with all of myself, as she did every day of her life. My commitment to CF is for her, my desire to better the quality of care, my hope to replace some of the pain with comfort and beauty, and my undying wish for a cure is for her.

Losing Marissa made my connection and my relationship with CF even stronger. I refused to be kept in the dark; I was determined to know everything. I researched relentlessly, and when Jen’s condition began to deteriorate, I promised myself that I would be there every single step of the way. I kept vigil at her side after she was listed and transferred to Mt. Sinai for transplant in October of 2006. There were so many moments of love there and of terrible fear while sitting in the MICU waiting room. The moments when it was just she and I, the sound of the ventilator pushing and pulling the air in and out her lungs, the relaxing music channel we constantly had on the TV, the never ending beeps around the unit, and the shuffle of nurses and family members are moments that have never escaped me. Whether it was holding her hand, or rubbing her lip to help her stop biting the tube, or walking arm and arm with Uncle Charlie to the elevator on her first dry run, or combing and braiding her hair after her miracle transplant, I treasure each and every moment. Her life post November 11^th 2006 was nothing short of a miracle. Her devotion to care for herself and to honor her donor with every single breath was amazing. Her life and her love are beautiful and my commitment to CF is for her, my desire to better the quality of care, my hope to replace some of the pain with comfort and beauty is for her, and my undying wish for a cure is for her. 

The individuals that I came to know through Jennifer are the reason for my full and absolute devotion to cystic fibrosis. The moment I felt the most love at Jen’s wake and funeral was with the cysters. The funeral director had begun to give me the cards that went with the flowers, this particular bouquet was blue and orange, Mets colors and Jen’s favorite beyond favorite, the card was signed from the cysters. I was amazed by the gesture of flowers and felt so happy for Jennifer and so full of love for these women, but then I looked up to see them all approaching her casket, two with oxygen tanks dragging behind them and I felt my heart both break and heal at the same time. Their devotion, their love and kindness, their friendship was so beautiful. And I am forever grateful to the cysters for the love they showed Jennifer and for the love they have shown me. When Tom and then Tina passed away two months later, I was in shock, I felt so incredibly sad and so hurt. I felt my heart aching, and I felt unable to comprehend this amount of cruelty, this amount of loss. But from this heartbreak, I began to see cystic fibrosis like I had never been able to before, it was beyond my own experience, beyond Jennifer and Marissa, it was an entire population of beautiful resilient people, it was a world that I had only touched the surface of. And I knew then that my commitment to the disease could not end here could not end with the loss of Jennifer and Marissa, it was only beginning and it needed to be more. I cannot recall how many times I watched Tina’s LIJ video, her confidence, her honesty, and her dedication to change the quality of care for adult cystic fibrosis patients, to raise the awareness of health professionals, and to better the experiences for people like her was incredible and it inspired me and set my path. Her laughter and her smile are missed by us all but her love, her spirit, and her fight will never end. My commitment to CF is for every individual touched in one way or another by this cruel disease, my desire to better the quality of care, my hope to replace some of the pain with comfort and beauty, and my undying wish for a cure is for us all.

I encourage everybody to register to be an organ donor, the choice to become an organ donor is not about death, it is about life; it is about life and love after loss. http://donatelife.net/register-now/