I have to start this post with a cliché. I’m too lazy to be original. Get ready. Here it comes. Chronic illness is like a rollercoaster.
I warned you it was going to be bad.
I’ve had two major seizures in two days and my head is too muggy to think through. Life always has healthy phases that introduce me to something called “A Full Life”. Parties and visits and dinners, oh my! Even income becomes something I can control. Want a wardrobe of new summer dresses? No problem. Just work as many hours as you want to and get it.
Being well is awesome…
… but hope damns me every time. When you’re in remission, there’s a moment when you switch from enjoying a rare high point for its scarcity to thinking it will last forever. The problem with hope is that disappointment always follows. Always.
Expectations are a motherfucker. They’re without a doubt the hardest low for me to manage on this chronic illness ride. How do you wallow utterly in the good days without thinking, “I’ve joined The Land of the Healthy People forever and will now live happily ever after”? How do you cope with the initial bad days without falling under the weight of all you’ve lost? Months or years of physical hell are easier for me to cope with. It’s the one-week-up-two-weeks-down that makes me fall over my feelings.
A rollercoaster that doesn’t have dips and highs is smooth flying all the way—no fear, no challenge, no adrenaline. It’s the same with relapses and remissions. If you’re on a down slope for ages, you find acceptance. Your expectations become realistic. Tomorrow will be exactly the same as today, so I find peace. But that’s now what you get when you’re ill. What you get is that rollercoaster.
I’ve learned what undoes the darkness on a day like today: gratitude. I haven’t suddenly become hyper-spiritual. This is not a whimsical concept. It’s the nuts and bolts of my life. It’s an intensely practical tool that makes my peace of mind possible. To be fair, it’s hardly easy to drum up gratitude out of thin air, but I can shift to a better state of mind relatively easily because I’m creative that way.
Want to hear the most absurd things I’m thankful for? My epilepsy because sometimes it comes with ecstatic highs and serene hypnotic hours that blow my mind, which is awesome when you refuse to take narcotics. I’m grateful for my epilepsy because my memory sucks and I can watch all my favourite movies over and over as though for the first time.
Today I have a pile of DVDs that’s just about big enough to break my coffee table and the most delicious Thai curry imaginable on the stove. And that is how I break the darkness. It works. It’s silly, but it does.