Chronic Illness: When Two Stories Unite

As I (Lisa) travel around the country, I love connecting with people. I did a talk for a hemophilia organization and met a man with an interesting point of view about his illness.

I noticed him when we were waiting in line to register. He was a tall, older, African-American man with a certain grace about him despite a limp and a cane. He was dressed in lots of clothes including an overcoat; uncharacteristic for mild San Diego. But it was cold and rainy that day. He had a wide, toothy smile that lit up his whole face as he heartily greeted the volunteers working the registration table.  

Sitting down to eat some breakfast, he asked if he could join my daughter and I. "Of course!" I reply. After the typical pleasantries, I asked him, "So what brings you here to this conference?" "I have hemophilia and I am finally coming out of denial." "Oh?" I ask, "What do you mean?"

And he proceeded to tell me about how he'd been meaning to come to this conference for years but just couldn't face the fact that he had hemophilia. Finally, due to bad health, he couldn't ignore it any longer and had decided to get support. He was tired of doing it alone.

"You see," he explained, "I am one of seven children. And I tried to keep up with all of my brothers and sisters. I didn't want them to see me as weak or sick so I just basically shoved the fact that I have hemophilia into the back of my mind. I did the bare minimum to take care of myself but I've lived a life that now I am paying for. I hope others don't make the same mistakes."

I explained to him that I was there to talk with parents about raising children with hemophilia and I asked if he had any wisdom to share, if there was anything he wished his parents had done differently.

"I wish they would have taught me and my siblings about my hemophilia, talked about it openly within the family. The whole family was in denial. It's like my hemophilia didn't exist. So I didn't learn how to take care of myself and I didn't learn how to cope with it well. And now I am paying the price.  My life is kind of a mess right now. I am searching for answers and meaning."

I encouraged him that sometimes we just don't know where the turns in the road of life will take us and that by telling his story, he will help others and perhaps find meaning himself. Because we are our stories and we all have a story to tell. He seemed stunned as though the thought hadn't occurred to him.

A tall black man and a short white gal- two hearts and two stories connecting for a moment in time. I hope that I made a difference in his life like he did in mine.

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Lisa C. Greene is the mother of two children with cystic fibrosis, an author and national public speaker. She wrote the award-winning book “Parenting Children with Health Issues” with Foster Cline, MD and published by Love and Logic. For more information, see www.ParentingChildrenWithHealthIssues.com.