May is Cystic Fibrosis (CF) Awareness Month and a wonderful time to share your CF story to help someone else who may be hesitant to share theirs. So to get the celebration started, I wanted to share a story that convinced me that my journey, while boring to me, can make a difference for someone else.
The year was 1984 and I was eleven years old. I remember going through a long clinic appointment at Grady Memorial Hospital, one of the busiest trauma centers nationwide located near downtown Atlanta. That morning, my doctor’s words and my mom’s expressions hinted to me that my health was not where they hoped it would be. Mom tried to console me but no luck. CF is a very draining disease – both physically and mentally – and at that point in my life, I couldn’t tell you which part was more difficult to handle.
It was frustrating that I had to do physiotherapy and take medications; things my peers never had to do. I had learned years earlier that my life expectancy was limited to 25 years. I wanted a mentor with this same disease to tell me that everything was going to be okay. That person did not seem to exist though. I knew it and my mom knew it. Even worse, I didn’t know anyone else older than me with CF. It was downright frightening for both of us.
At that same clinic appointment, I saw a poster on the wall of a bodybuilder who was endorsing a weight-gain drink. Like most people with cystic fibrosis back then, I was skinny and malnourished and needed drinks like these to put on weight. My mom knew nothing about the man on the poster but she knew me and she knew I needed encouragement so in that moment the words just spilled from her mouth like a pitcher of water, “He has cystic fibrosis, too,” she said. “You can look just like him.” I looked at my skinny frame and wondered how this could be true. The man did not have cystic fibrosis and my mom knew it but I didn’t. My mom lied but only because she knew that I needed something that doctors and textbooks back then never seemed to give me – that something was hope.
My life was full of ups and downs. I did not know anyone older than me with cystic fibrosis who could tell me that I was going to be okay, but I managed to use that poster and my mom’s words to encourage me and help me overcome so many of the difficult emotional obstacles in my life. I lost my mom in 2020 to cancer but the impact that her encouragement has had on my life remains immeasurable.
Three decades after my clinic appointment, in 2014, a young 12-year-old boy by the name of Joshua Garberg was also dealing with a long clinic appointment. Joshua, who was diagnosed with CF at five years old in Placentia, California, was experiencing the same thoughts I had those days. “I had trouble realizing that people didn’t have to wake up an hour early for a breathing treatment,” says Joshua, “or had to take enzymes each time they ate.”
Cystic fibrosis can be a very lonely disease. There are only 30,000 to 40,000 of us in the US and we are not recommended to get within six feet of each other due to the risk of bacterial cross-contamination.
While Joshua didn’t have a poster to encourage him, Joshua was able to find hope in the form of a book – a book I had written called The Drive at 35: The Long Road To Beating Cystic Fibrosis about finding hope in the midst of fighting the disease he and I shared.
The book was handed to him by his CF pediatric physician who had received the book during a speech I had given in Anaheim, California. “We wanted to give you this book so you could see that you’re capable of living a long, happy life,” said Joshua’s doctor, “Andy Lipman has cystic fibrosis like you.”
Shortly after Joshua received the book, he found my e-mail address and sent me a note to tell me how much the book helped him.
“I still do struggle with the feeling of wanting to be like my peers,” Joshua admitted to me, “but I do think your book helped me embrace that feeling of being different.”
Reading Joshua’s words reiterated to me that my story can help others battling the same disease and also confirmed to me why my mom’s fib so many years ago still plays such a positive role in my life.
Today, Joshua is a 21-year-old, fourth-year student at the University of Southern California (USC). He again reached out to me and asked if we could talk on a Zoom as he wanted to write a profile on me for his ENGL 300 – Advanced Expository Writing class. I was so touched that our exchange and my book meant so much to him.
“[You] motivated me to prevent CF from being an overpowering imprint on my life,” Joshua told me.
No longer do young people like Joshua need a fraudulent poster to tell them that they can live with this disease. They now can witness people older than themselves who are indeed living their lives with cystic fibrosis – something I’m certain benefits both them and their parents. Something I know my mom and I would have benefited from nearly four decades ago.
If anything, I hope this blog incentivizes those who were once hesitant to tell their stories to openly share their tales. While you may not see your journey as anything special, it may just help someone to navigate their own journey.
Live your dreams and love your life,
Andy
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