Moving Forward With Chronic Illness When the Destination’s Unknown


When you decide to travel in your everyday life, you almost always have a starting point, a route and a destination. You pack for your trip. Shorts and bathing suits for Florida, and boots, tents and jeans for a hiking trip.

But what if you were given a starting point, a suggested route, but no destination? Just an endless amount of possibilities. You may need shorts or jeans, or both. You might end up needing a raincoat with gloves and a bicycle. You won’t know until you start your travels. Sounds adventurous, or pointless, or exciting, it depends on who you’re talking to.

Now imagine your trip was your life.

You were born and that is your starting point. You were fed the idea that your life would go as planned: school, sports, friends and extra-curriculars. Then off to college and then to get a job. Get married and have kids. Retire and grow old with your spouse with maybe a few bumps in the road. The end. So your parents and teachers and family give you the tools you’ll need for your life. They teach you to share, how to organize, how to speak, read, write, do algebra and how to find the units of energy in an electrified object if it’s 2:30 a.m. on a Saturday in October.

They give you the things you think you need, and most of the time it’s a success. They do the best they can. But what happens if you have your luggage packed, all of your tools in hand, and you get thrown a wild card and suddenly you’re in a place they never taught you about. Suddenly there is no order. You have no plan, never knowing where the next day will take you. There is no way to plan a year in advance, not even a month in advance. And now your tools are foreign objects, rarely used, but admired and longed to be useful.

At first it’s scary, but eventually you learn to stand your ground, how to land on your own two feet. You find yourself going with the flow. Expecting one thing, but being completely okay when it goes another. You learn to move forward, even when you don’t know where you’re headed. You find the beauty in life. All of the wonderful things become all more amazing. The glory outshines the pain and the colors are all the more vivid. You find joy in the illuminating colors in the sunset, and comfort in simple conversations with friends. Everything that used to be pretty cool is suddenly magical.

Now you see that life isn’t about the destination, it’s about the road that takes you there. You now don’t mind the crazy challenge of life, because it gives you a really awesome adventure.

woman holding hope sign

A longer version of this post originally appeared on Climbing Rivers.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

JOIN THE CONVERSATION

Related to Ehlers-Danlos Syndrome

How a 7-Year-Old Convinced Me I Was Going To Be OK

She was just a little girl, but I saw myself in her. I saw myself suffer as she suffered. I saw myself hold on because she held on. I saw myself become hopeful because she was hopeful. I saw myself smile because she smiled. I saw her save me through her bravery. Eden has Ehlers-Danlos syndrome [...]

To the Only Person Who Believed Me When I Said I Was Sick

Weddings — they’re beautiful to witness. How would I describe a wedding? A wonderful new beginning. The joining together of two paths. Two lives and situations becoming one. This past weekend, I got to go to a wedding. Not just any wedding. The wedding of someone important to me, the wedding of my second grade teacher, Amy, or, [...]

New York Islanders Prove Some Things Are More Important Than Rivalries

Karen Richards woke up after brain surgery groggy, tired and surrounded by hockey players. The 15-year-old from Boston is a diehard Bruins fan. But on Thursday, March 12, five members of the New York Islanders stood around her. Karen didn’t mind. Photo via Karen Richards The teen lives with a roster of diagnoses including Ehlers-Danlos syndrome, [...]

Why I Won't Let My Heritable Disorder Define Me or My Kids

To the diagnosis that changed my life but doesn’t define me: When I first heard your name and started to learn about you, I actually felt a twinge of excitement. That’s right, excitement. For more than six years, I had chronic and escalating pain in my joints, experiencing numerous dislocations and subluxations – literally from [...]