by: Steve Place
I have lived for 64 years with mild hemophilia and have voluminous experience, from which I came to my own rock-solid conclusions about how someone with a bleeding disorder can participate in sports and other potentially life-changing activities.
One experience was a significant life change at age 10, when I sustained a serious head injury. I felt able to ride my bike with no hands. Sand and a quick moment of unbalance tossed me off my bike, and my head hit the pavement hard.
I got myself up and walked back home with my bike. My sister saw me and screamed. That’s when I felt a huge lump on my forehead and knew I was in trouble. Our doctor, who made house calls, wrapped my head with a pressure bandage and told my parents to give me two aspirin every four hours and added that if I made it through the night, I probably would be all right. Aspirin and all, I survived.
All of a sudden, I was prohibited from participating in contact sports. This is tough for a 10-year-old boy. Although I was always the smallest kid in my class and the last to be chosen at sports, it still hurt. Fortunately, my mom and dad and sister were very supportive, and we got through it together. They steered me to other avenues that led me to a happy, healthy, and productive life. I thank God every day for my hemophilia!
I look back and wish I could have accepted at age 10 what I strongly believe about my bleeding disorder today. I went from “Boo-hoo, I can’t do certain things!” to “Drop back, punt, and come up with a new plan.”
Now that may sound a bit harsh, but the sooner we accept our limitations in life and pursue the best and safest path, the better off our lives and our families’ lives will be. Yes, we must think about our families, too; it’s not all about the person with hemophilia. Every person with a bleeding disorder has affected and will continue to affect the lives of those we love most. Our bleeds seem to come at the most inconvenient times, for us and for them!
It was traumatic when at age 10, I had to stop doing the things my buddies were doing. But here I am today, happy, married for 40 years with two daughters, successful, and in excellent health. I am physically active in my daily pursuits.
I am a professional handyman and sole proprietor, and I work daily with all types of sharp tools, both power and manual. Safety and thinking through a job are paramount. Knee pads and elbow/forearm protection are vitally important. The most dangerous tool in my toolbox is a dull blade.
I treat on demand and prior to some potential bleeding situations. I have 95% mobility in all of my joints. The only time I infuse, apart from surgery, is when I make a mistake.
We all want to be the best parents we can be for our kids. Good, tough prodding and steering today can result in a wonderful life later on for them. I made a very strong, positive personal decision that has guided my life for the last 50-plus years. I decided that I will respect my disorder, but I will not be afraid of it. I will determine what I will do, and what I will not do. I basically took charge of my life.
Stephen is 64 and has been married for 40 years. He has two adult daughters, and works 50 hours a week. He is active in his church, both teaching and leading. He believes that life is great, especially when “I respect my disease, but am not afraid of it.” firstname.lastname@example.org
©LA Kelley Communications, Inc. Reprinted with permission.
Publication: PEN 11.18
Column: As I See It