Why I'm Viewing My Future With Curiosity, Not Hope in My Life With a Progressive Illness

“When it comes to the future, I mean it’s good to be hopeful, but you don’t even need to be hopeful. You just need to be curious and let that curiosity drive you into wanting to see what happens next.”

When I was randomly scrolling through Instagram, I found this statement. Is it weird to say I found it extremely comforting?

When you live with a progressive disease, having hope can be hard because science has proven your health will probably get worse. When you have a life-threatening condition, hope can also be difficult because your body may show you countless times that when it comes to some of the most important things — health and time — you may have no say in how much you have left.

Having hope can be absolute torture when you live with a progressive chronic health condition because sometimes nothing is worse than letting yourself want what you know you can’t have. 

Lately, as my health has gotten worse and my dreams have grown bigger, hope has seemed like an impossibility.

It’s reached the point where, when I was recently asked to write a letter that could never be sent to my younger self, my first thought was “Heck no!” I asked myself who in their right mind would fight as hard as I have to be in the life situation I’m currently in.

But then I thought about holding on to curiosity about the future.

What will happen? Will those dreams come true? What will I achieve? Who will my siblings become as they approach full-fledged adulthood? Who will these adorable nieces of mine turn out to be? Will I meet an amazing man or an incredible group of cats? Will — by what seems the smallest of odds — my health actually stabilize?

That perspective felt more reasonable to me. It felt more possible, and it gave me a heck of a lot more hope than I’ve felt this whole month. It felt realistic. 

I’m not one who enters lotteries or who dreams too extravagantly. I’ve gambled once or twice for the experience, but I find myself having anxiety over what I could have spent with the money I’ve gambled instead of enjoying the gambling in general.

Illness has turned me into a hardcore realist who doesn’t take chances.

My perspective with my rare disease makes hope sometimes feel like a fantasy. But curiosity, on the other hand, feels like an unpredictable possibility — a “big, beautiful maybe.”

So if you struggle with hope like I do and sometimes struggle with the strength to continue, try to hold onto curiosity, and let it propel you to whatever “big beautiful maybe” could come next.