My vision of the term “CF warrior” when I wrote the first volume of The CF Warrior Project was simply a person who has cystic fibrosis.
If you’ve begun reading the inspirational stories in The CF Warrior Project, Volume 2: Celebrating Our Cystic Fibrosis Community, perhaps you’ve noticed that I not only feature those with the disease but also those who fight for those with the disease. It is now my opinion that the term “CF warrior” should extend to more than just those who test positive for the disease.
Why the change of heart?
The simple answer is my mom, Eva Goldberg Lipman.
My mom ranks amongst the greatest cystic fibrosis advocates I have ever known. Her CF story reminds me of the likes of Margarete Cassalina, Beth Vanstone, Melissa Yeager, Jaime Parsons, Travis Suit and Diane Shader Smith – moms and dads who were featured in volume two – moms and dads who never gave up when it came to their children and their children’s legacies. There are thousands of these courageous people throughout the world. They are all CF warriors.
Mom’s story began in the mid-1940’s as she was born to two Holocaust survivors in a displaced persons’ camp in Germany. Three years later, they were sponsored by the Hebrew Immigration Society and moved to the United States. After becoming the first member of her family to graduate from a four-year university (the University of Florida), moving to Atlanta and meeting and marrying my father Charles, she would have her first child, a daughter they named Wendy, in December 1970. Wendy only lived 16 days due to cystic fibrosis.
My parents did not know that they were CF carriers and suddenly realized that there was a one-in-four chance that any attempt to have children would result in the child having CF. My parents would try again three years later but the result was unfortunately the same. I was born with cystic fibrosis.
Mom did not have the typical job after I was born – she was a CF mom, which some would argue is as grueling a job as one can have.
Her duties included chauffeur as she escorted me to most of my doctor’s appointments at Grady Memorial Hospital (which was primarily an emergency hospital so not exactly a place you want to take your child four or five times a year) while often having to hear that my cough would continue to be persistent, my bowels would continue to be greasy and that my health would continue to be concerning.
Mom also played the role of respiratory therapist as she placed a nebulizer mask over my nose and mouth every morning so that I could breathe in the aerosol meds which would be followed by my *postural drainage therapy often exhausting her hands and arms from administering the procedure.
She was also my caddy as she carried my pill bottle everywhere we went to ensure that I would not forget my enzymes which I had to take before each meal so I could digest fats.
Mom played psychologist, too. She listened to my greatest fears as I would explain how classmates would ask me if I was going to die, if I was contagious and why I was so skinny. I asked her many times why I had to take medication and do my physiotherapy while none of my friends did. She was an expert in talking me off the ledge.
Mom also played the role of eternal optimist. If she needed to tell a white lie for me to gain confidence, she would do so. If she needed to hide videos or flyers that declared the life expectancy of someone with the disease, she most certainly did. She and my father orchestrated the biggest secret of all from me – the cause of my sister’s death. All I knew was that I had a sister who died before me. It wasn’t until I was 25 that I was able to get Mom to tell me that Wendy lost her life to cystic fibrosis.
Mom was the one who called me downstairs to tell me that the cystic fibrosis gene was discovered in the fall of 1989 and 30 years later would call me to tell me that Trikafta, the first CFTR modulator I could take, had been FDA approved. “You are going to live a long life,” she would always tell me despite textbooks and medical professionals often disagreeing. Nearly five decades later, it appears that Mom and I had the last laugh.
We lost Mom suddenly at age 74 to lymphoma on November 18, 2020. The woman who was born in a displaced persons’ camp, lost a child two weeks after birth, had to deal with another child with a chronic illness and had to fight for her life during the midst of the pandemic rarely complained about her circumstances.
In the forty-seven years I spent with my mom, I learned how important it was to have someone in your corner when dealing with a chronic disease and that the term “CF Warrior” is not just about having CF in your DNA.
Mom advocated for me when life-changing drugs were at a minimum. She performed my postural drainage when her hands were bitterly sore. She fought insurance companies to make sure I had the proper medications. I could argue that not only was my mom a CF warrior but that she taught me how to be the CF warrior that I am today. That is why I have changed my stance on the definition of a CF warrior and that is why this book is dedicated to my mom.
Please order your copy of The CF Warrior Project, Volume 2 today and read about all these inspiring people including my mom who deservedly share the title “CF warrior.”
I’m so proud of you, Mom.
Live your dreams and love your life.
Best Wishes,
Andy
*Postural drainage therapy – my mom (and dad) would hit my sides, back and front for 30 minutes a day to loosen the mucus in my lungs so I could cough it out.