How Living With a Genetic Disease Is Like Running a Race Without a Finish Line


I remember in school counting the years until graduation – I thought I would never get to the end. In college it was the same thing repeating itself. Over and over I was always counting the minutes, the weeks, months and years to get to the finish line. No matter where I was, in school or working, there was a finish line.

So here is the thing. When you live with genetic disease there is no finish line. It is a constant, never-ending marathon. Some days you can sprint and some days you cramp up. There are days when the weather is good and other days when the weather is stormy. But there is never a day when the race is over and the finish line is in site.

There is no finish line.

As a person who runs this race, it is exhausting. As a parent who supports her children running this race, it is both exhausting and beyond painful to witness. Let me at least carry them for a while, absorb the stress of the constant marathon, the endlessness of it. Find a wheelbarrow to help me push them through their day…

It doesn’t work that way. Not with genetic disease.

Instead you acknowledge the pain. Accommodate and adjust. Make room for the strength you will need for running an endless race. You cry your tears and dig deep because even when you hit the wall you don’t get to opt out of this race. You are in it and you must run.

There are moments when you are Forrest Gump and the world is running with you. Awareness is powerful and eventually it will be the thing that creates a finish line. Until that time we rely on our family and friends to cheer us on as we try to catch our breath, and keep running.

We are forever running our endless race. Let us run with grace. Let us run with love. Let us run with hope.

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Photo via lzf on Getty Images


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