Guest Post: Zebra Olympics

You know those videos of injured runners at places like the Olympics? The ones where the runner refuses to quit, even though they’ve obviously hurt themselves badly? This video from the 1992 Olympics is the kind of thing I am thinking about: https://youtu.be/t2G8KVzTwfw

Derek Redmond hurts himself, and he refuses to quit, even though his face clearly shows his agony. His father RUNS to him and helps him, sometimes forcefully shooing the officials away.

Life for a Zebra can be like these runners. We come out of the starting gate with our peers, and at some time in our lives, the injury slows us and eventually, our peers are so far in front of us that we are straining to even see their dust. We lose friendships. We lose jobs. We lose our livelihoods. Some lose almost everything.

For me, my mom is like Derek Redmond’s father. She holds my arm and supports me while I hobble along attempting to run the race of life. She comforts me when I cry, shoos people away who may doubt my pain and issues, and generally helps me keep going. I want to finish this race of life in my way – helping others and staying as strong mentally as I can.

Mental strength is HARD. Imagine that you spend every single day fighting insurance companies for approval for every thing you need, talking to multiple doctors about the many issues that plague you, trying medication after medication to manage conditions, trying to explain to anyone that yes, you agreed to dinner but the day was hard and now you need sleep. All of these things are draining. Most people find just one of these things hard, so multiple things in a day, and every day, feels like that Olympic runner.

Zebra (or any chronic condition) life is HARD. It means you may not be able to work, but you work every minute of the day to function. Sometimes just getting out of bed for an hour is work. Sometimes the victories in our lives are so minuscule to other people, and so gigantic to us. Those victories range from making more than one meal a day (cooking is hard due to standing and repetitive motions with the joints) to walking a block to getting a much needed medical test done. To some people, these victories are meaningless. To me, and many of my Zebra friends, they are huge. Some days, one of these things is enough. Some days you get multiple things done, but pay for it the next day. Those are days I just say to myself “I am strong enough to weather even these bad days”. I know that my words can seem trite to others, but it works for ME. But what works for me, may truly hurt others. That is the nature of a Zebra life – we are all covered in different stripes, and we all struggle in different ways. I think everyone has a different journey to go on, and what works for me, may not work for anyone else. This just happens to be MY way.

This is a quote from the Derek Redmond interview. Derek’s father came down from the stands and ran alongside Derek. As Redmond later recalled:

The old man put his arms around me and said, ‘Look, you don’t need to do this. You can stop now, you haven’t got nothing to prove.’ And I said, ‘Oh, I have — now get me back into Lane 5. I want to finish.’

Derek Redmond, 1992

I want to finish the race, and I have to prove to myself that being a rare disease person isn’t the only part of me. I am also a friend, an aunt, a daughter, a fighter, and a chocoholic.
Thank you all for reading my first note.
ZebraSarah