How Can We Live our Best Lives Even Without the Cure?

The response after receiving a rare neuroimmune disorder diagnosis of so when will I get better? When will things go back to normal? is incredibly common. That’s the first thing I said, and it’s the first thing many of you said.

It never became that “normal” again. Although I was so young when I got sick, I can still recall running freely around on the playground, being able to see out of both eyes, being able to use the restroom in seconds rather than in minutes.

I wanted that normal again. I wanted my friends to like me again, but after I became so sick, I could barely stand up for longer than a few minutes, let alone run. And I looked so different, having gained a lot of weight from steroids within a month or two. My once-thin frame was now engorged, my stomach taut against my skin. I couldn’t smile—my cheeks were so bloated it would hurt. It was bad, and I was so young and broken up about it. Why couldn’t things go back to the way they were?

It was never normal again, but I spent my younger years pining after healing. The medical community said medicine to fix me could be on the horizon. My religious community said God wanted to heal me, but my parents were sinning and they needed to repent for those sins in order to be healed, or they said that I “must have never had a moment of real faith” otherwise I would have been healed, or that enough prayer would move the hand of God, that I just had to keep praying, and praying, and praying.

One person at our church said that I would be healed the next morning, that I’d be able to see again out of both eyes—that things would go back to the way they were. I could barely fall asleep that night, I was so excited. I laid in my pink princess bed, staring at the ceiling in the dark, the right side of the room blurred and darkened. I finally fell asleep. I woke up and thought to myself I’m healed! and covered my left eye with my hand. I was still blind. I cried, so hard. I was so broken, so damaged about that, and so young. Who lies like that to an eight year old? Why couldn’t my healing have happened then? Why couldn’t things go back to the way they were?

You can spend your whole life like that, you know? You can think to yourself every day, I have to get better and then I can live the life I was meant to live. Don’t. Take it from me, as someone who did that for 15 years, don’t wait. Normal might come again, but it’s not here yet. Live, and don’t let anyone stop you. Don’t slow down for anyone and don’t blame yourself for the circumstances. You can still live an amazing life. It will just be a different one than before.

I’m twenty two now. I live in Orlando and I have made good friends. I’m writing this to you right now as I sit in a coffee shop working alongside my creative writing group. I have my own car, my own apartment, and massive dreams. I’m going on a road trip next week to god-knows-where. I’m just getting on the road and choosing a handful of destinations. Maybe it’ll be northeast Florida this time? I have no preference, I just want to be alive. I want to do all the things people never thought I’d be alive to do. I want to love the whole world and see every part of it, and maybe that’s stupid. Maybe the pendulum will swing the other way and in a year or two I’ll mellow out and settle down, but for now I’m striving for the impossibilities. I want my life to be a constellation, not a straight line. And I want the same for all of you.

The following articles I have chosen all depict different aspects of living our best lives even without the cure. Please read along and enjoy.