Point of View

By Alex Meis (alexandrameis@gmail.com)

The derivation of the word Courage is from the Latin word “cor”, which means "heart." It is defined as the “mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.” However, Maura is first to mind when I think of “courage.”

Maura, my cousin with Cystic Fibrosis (CF) was born 35 years ago to two equally courageous parents, Myra and Jerry. She was born into a home full of love and also into a world that had not fully understood the disease. I fondly remember growing up on the beach during the summers in Ocean City, NJ with Maura, and her brothers Andrew, who also has CF, and Kevin. Flash-forward to 2004 -- Maura married her college sweetheart, Joe. I always joke that it must be statistically possible that I meet someone as great as him in a city filled with 8 million people. A few years later Maura became a mother to adorable twins, William and Elinor.

Flash-forward to 2012 -- I once again spent many days with our family, but this time at Columbia Presbyterian Hospital, a place far from the beach. Maura was there for 100+ days as she waited for a lung transplant. We waited… and waited… and waited… The days were merciless, and did not seem to mind that the wait had put Maura on ECMO, extracorporeal membrane oxygenation, a cardiac and respiratory support for lungs so severely damaged that they can no longer function. But despite all odds, this life-threatening condition was not going to beat Maura’s will to live. On November 3rd an extraordinary team of doctors performed a miracle. I vividly remember standing hand-in-hand around Maura’s hospital bed in the MICU, saying a prayer of thanksgiving that my cousin was getting new lungs.

Maura has struggled this past year with unexplainable courage. She has taught me what it means to be a fighter, and she has triumphed over all fear that comes alongside living with CF. CF is a terrible disease; there is no doubt about it. I cannot help but get sad or angry that my cousins have to live life dictated by medications, hospitalizations, and organ donations. But Maura has exemplified beauty and grace and Andrew, perseverance. Given Maura’s most recent transplant I requested that some family members speak to their experiences.

“I met Maura over 15 years ago and from day one, she never lived her life with CF as an anchor. Maura had ambitions to build a career in the entertainment business and also be a loving wife and mother.  She accomplished all of this and more, all the while keeping a positive, upbeat demeanor and outlook on life.  Her determination and passion for life has had such a positive impact on our kids and me.  We love her with all our hearts.”
–Maura’s Husband, Joe Wozniak   

“Living with a chronic disease such as CF brings new perspective to the idea of "life's challenges".   The notion of having a "tough" life or a "tough" job becomes laughable when we see individuals like and Andrew accept and overcome the battle for life...literally.”
–Maura and Andrew’s Uncle, Bill Meis

“It seems the word “hero” is used more frequently today than ever before.  I don’t know if we do that to make ourselves feel better, to reinforce that we do live in a better world, or if it’s just become part of the lexicon. But, to me, a real hero is someone who lives a life that most people couldn’t – without complaint, without praise, without recognition.  Knowing and loving two individuals with CF, seeing only some of what they’ve gone through in their lifetime, understanding how much more they’ve experienced than I could and will never know, defines heroism for me.”
–Maura and Andrew’s Aunt, Kathleen Corcoran

“I once accompanied Maura on a regular follow up appointment to see her transplant doctors, and she had me running from floor to floor for x-rays, blood work, pulmonary function tests, etc. I often found myself thinking, “How the hell does she do this, and do it with such equanimity”? She takes each day gracefully and with a wicked sense of humor, with all its myriad physical challenges just to get to the next day so she can be there for her family to enjoy life’s daily pursuits. This is what life is all about, and Maura has taught me this, and made me cherish and embrace each and every mundane and precious moment.”
–Maura and Andrew’s Aunt, Noreen McKee  

“During one of my visits with Maura long before her transplant, she shared that she dreamed to be just like all her friends and not have CF. I am sure that all individuals with CF have the same dream.  Regardless, she loves life and loves to laugh. As she is waiting for her second double lung transplant, I have no doubt that she will have a long, beautiful life.”
–Maura and Andrew’s Aunt, Mary Lou Schneiders

“I think while CF hasn't defined Maura and Andrew, it has, obviously, been a focus of their and our lives. I also think it has made our family very close. Like it or not, CF has caused us to be bound like only families that have serious illnesses can be. And it doesn't just include our immediate families. It has included friends and communities on a local and national level. I think it also shows how strong our family is and how we have, and will, continue to get through this together.”
–Maura and Andrew’s Uncle, Jerry Meis

“From the perspective of a proud and privileged aunt, Maura, Andrew and Kevin are an integral part of my life. It has been my joy to watch them grow throughout their lives taking advantage of life to its fullest. I know that I have always considered them to be my “adopted children” as they have grown up. They have displayed through their lives the meaning of integrity, genuine care and love and the essence of what our journey through this world should be.” –Maura and Andrew’s Aunt, Judy Ragan

Throughout this journey I have experienced both heartache and joy. I assume many families in the CF community feel the same. I encourage more to talk about their journey with CF. I have found that it helps with healing and allows for celebration. Never have I felt so much love than during the past year. As life after the transplant has brought its own set of challenges, Maura now waits for a second pair of lungs. I have no doubt about it that Maura will continue to be my courageous older cousin, a Mother, Wife, Daughter, Sister, Niece, and my best friend, as she continues to beat CF.