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Finding Joy When Illness Means Life Doesn't Go the Way You Want

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I will tell you a secret.

Life (almost) never goes how you want.

I learned this at the wise old age of 13. Suddenly, I no longer was who I had planned to be. I no longer would be able to run again, I would have to go through high school having waist down reconstruction surgeries, and I would treasure each new step like it was my first.

I have learned so much about how people never treasure things until they are gone. I saw it with my brother when he had to endure a life-altering and a life-taking accident. I saw it when my mom got a kink in her back and didn’t move as easily. And I have felt it in everyone during this epidemic.

I have been almost completely homebound since I was a senior in high school. And that wasn’t because I was healing from my surgeries. I learned long ago how to deal with being stuck at home with little to entertain you after years of friends, parties and shopping. The frustration you feel. The complete lack of control and the tears that you don’t really know what is coming. The difference was that I was forced to stay at home, in bed even. I was forced by my own body to become a hermit. It is so sad knowing the majority of your friends won’t check in on you when you are unable to text back.

The first thing that was taken from me was my hands. As a senior, I had to have my parents come to school with me so that they could write for me on the tests I had to take. The writing on my last finals? My dad wrote them for me.

The heart-wrenching pain when you can’t do a gosh dang thing about what is happening to your crashing world is unexplainable. You don’t get it until you have overcome it. And that is the thing, you don’t just overcome it within a few months, it can keep coming back each time you ponder how different and perhaps even lacking your new life is.

You don’t realize the love you have for things until their dependability suddenly stops.

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I had to relearn how to walk at the age of 15. Ever since I am grateful of the steps I take. As I say my nighttime prayers, I always am grateful for walking. My family couldn’t understand when, after months of being in a wheelchair and struggling to walk, I still couldn’t walk, and that was when the panic attacks began. I couldn’t understand it. It was an hour of pure terror and this incredible knowledge that I would never be able to walk again. I sobbed for that long hour when I was on vacation with my family, supposed to be having fun, supposed to be enjoying myself. But I was surrounded by people who didn’t have a clue what my life was like, and they didn’t understand pain like I did. I hated each time they told me to “put on a happy face” as if I was being overly dramatic after having my legs broken in eight places and twisted to be straight. They had no clue.

Looking back, I can give forgiveness easily. People — no matter how empathetic — cannot understand what they have not experienced. People think “I broke a finger once, I understand pain.” Or “I had to stay home for a few months when I was really sick, I understand being home/bedbound.”

But that is only a taste of what life is like. Just a little niggling in the mind that makes you think, “Wow when I was sick I was so miserable, life is so much better when I am healthy.” Those little thoughts that we appreciate what we have because we didn’t have it once.

I’ve learned life is not about all the things we do or accomplish that we can show off to everyone. Life is not about accolades or how much money you have in the bank or your wallet. Life is about what you accomplish in your heart, mind and soul. Some of the happiest people have the least amount of things. They appreciate every little thing that comes because they have not only been without, but they know the worth of things as they are.

For me, raspberries my selfless parents buy for me are treasures I savor and thank God for each time. A simple moment when my dog makes me laugh when no one is looking is a gift from the universe.

Happenings in the world don’t affect me as much as others. Not just because I am still stuck at home in my bed all these eight years later with a fading body that can’t do what I need because of excruciating pain. But because I’ve found that not only does life not even remotely go the way you want (in fact I have found it tends to take you through your greatest fears) but actually, life takes you where you need to go.

If we live life to the fullest, no regrets, nothing can really touch our peace.

I don’t mean living life to the fullest based on your wants. I mean living life to the fullest because the things most worth our time are often the things that serve others. Savoring family, being there for a friend when they need you most, treasuring food on the table and a full fridge. Even savoring each step you are able to take. It is true we never realize what we had until it is gone, but if we treasure all the important things and live searching for the gifts we all are given, regret will be a word we happily will struggle to understand.

Getty image by Valentyn Volkov.

Originally published: September 8, 2020
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