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March Madness, Chronic Illness and Unpredictability

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March Madness isn‘t a thing I would know about if it wasn’t for my oldest, Hayden. But brackets are the air he breathes all month long. It’s important to him that I fill out brackets for him to track and talk smack about. Out of my great love for him, I oblige. Knowing nothing about the teams, I pick based on who’s name or colors I prefer. It’s not a system I’d recommend for everyone, but it works for me.

So far, we are one day in and Hayden has reported that just slightly over 1 percent of the millions of brackets completed are still perfect. Despite the fact these people did not choose based on colors, gut instincts or mere whims, they still were not able to accurately predict the outcomes. Even though like Hayden, many have been watching these teams and quoting stats since they were in kindergarten, they still couldn’t accurately predict the future.

Welcome to life with a chronic illness. It is, indeed, madness that lasts for far more than the month of March.

No matter how long you’ve wrestled your particular illness or tracked your symptoms, future predictions still escape you. Regardless of the number of years you’ve lived in a body at war with itself, you still find yourself unable to provide a clear answer about what you’ll be able to do next Tuesday. Can you attend the luncheon honoring your friend? That’s a great question. You should know the answer mid-Tuesday morning.

Each time someone asks, “Could we get together next Friday and spend eight hours walking around in the Florida heat for this event”? I want to hand them a bracket. “Fill this out. With the same level of accuracy in which you can provide the final outcome, I can predict my ability to attend the full duration of said event in the Florida heat without cussing anyone out.” In other words: I don’t know. Please hear me: it’s not that I don’t want to know. Or that I want to be a snarky sarcastic jerk threatening to cuss people out. But just like there are countless factors that affect the outcome of a basketball game (Home or away? Injuries? State of mind?), there are also countless factors affecting the body of the chronically ill person on any given day. For me this might look like: How did I sleep the night before? Are my joints super stiff, swollen and on fire? Do I have some strange or horribly painful infection? Do I have a migraine? Am I too tired to even bathe myself? Is there an overall pain bringing tears to my eyes? Am I sick to my stomach from pain, fatigue or infections? Am I experiencing side effects from a new medication? Have I recently changed medications? Is it especially warm? Am I having trouble breathing? The list goes on and on. And I’m sorry to say it includes, “Do I just not feel up to being around people today?”

People love March Madness for its excitement, unpredictability and upsets. But I can’t remember the last time anyone told me they loved that I was so exciting and unpredictable. Do I need to make a bracket? Do cash prizes need to be involved? Do I need to post what I’m able to do on any given day so folks can establish patterns and make educated guesses?

I’m (mostly) joking. The point is those who struggle with chronic illness in your world have as little control over the unpredictability of their bodies as you do March Madness. Maybe you could just decide to enjoy the ride? (And include cash prizes as needed?)

The Mighty is asking the following: How would you describe your disability, disease or mental illness to a child? If you’ve done this before, tell us about that moment and the child’s reaction. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: March 29, 2016
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