An open letter to my chronic disease

Steven Winfree  |  Posted
Article author Steven Winfree and his wife and their dog

Dear Chronic Kidney Disease,

You and I have been acquainted for about 12 years now. You introduced yourself to me when I was 18 years old, though you were probably hanging around for a while before that. I was just a kid who was about to start playing college basketball, which was a dream come true for me. Even to this day I am not sure why you timed it that way.

I must say I was very confused when we first met. I had no clue what you were or why you were a big deal. I was told by a doctor called a nephrologist that only one of my kidneys was actually working, and that you had already made yourself at home in the other one. Because of you, I had a number of very uncomfortable and invasive procedures that I would not wish upon anyone.

One of those was a biopsy where a doctor had to stick a needle into my kidney to figure out who you were and perhaps why you decided to move in. A nick to an artery caused severe internal bleeding, and I needed emergency surgery to save my life. I remember the doctor saying how lucky I was that the bleeding just miraculously stopped and that somebody upstairs was looking out for me. That was a really hard few days, thanks to you.

After that, I put my dream of college basketball to rest and transferred to another school to focus on life after basketball. I discovered sports business and after I graduated, I landed an amazing internship that led to job I loved working for the Orlando Magic. Life was good until you decided to rear your ugly head again. Gout? Really?? It caused so much pain I couldn't bear it. I moved back home and worked for a minor league baseball team. But the gout was so bad, I couldn't work at a job that required me to be on my feet all day. I enrolled in graduate school. That’s when you started to get busy in my other kidney, causing its function to decline. But something wonderful happened during my time in grad school—I ended up meeting my amazing wife. So, I guess in a way I have you to thank for that.

I am now 30 years old and have decided to follow my passion for helping people and I feel I owe that to you as well. In fact, I have realized that I am who I am because of you. If it weren’t for you I would not have ended up at the University of Tennessee, Disney Sports, Orlando Magic, getting my master’s degree, finding my beautiful wife and now, helping kids who are battling deadly illnesses. You no longer scare me, but you have caused me so much emotional and physical pain. I was just a kid when you came along—and I will never understand why you decided to go after a kid—but as an adult I am grateful for you. You have strengthened my faith, you have given me the freedom to not be afraid, and you have helped in creating who I have become. You see, while you set out to do me harm, scare me and cause me to lose hope, you were actually propelling me to become the person I am today.

You put me on an emotional rollercoaster. People don’t understand how sick I really am even though I look “fine.” The day is coming when you’ll take the last of my kidney function, and I’ll need dialysis or a transplant. But I’m ready—my wife is a match, and we’re in this together.

So, kidney disease, between us, I want to thank you.

It took Steve Winfree of Knoxville, Tennessee, 12 years to be comfortable talking about living with kidney disease. “I want my story to be proof that kidney disease is not a period in my life, but rather a comma just before the next amazing journey in my life.”

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