It’s Wednesday morning. I am awaiting an important business phone call, and it starts: the incessant chattering of my teeth that doesn’t allow me to speak. For the next ten minutes, I’m “tongue-tied.” The phone rings and all I can do is let it go, knowing that the person on the other end will no doubt be annoyed that I didn’t answer at the appropriate time. Hopefully, they’ll be available later, when everything stops and I can call them back. As I stress about the phone call, I feel my head begin to throb. Suddenly, the light pouring through my dining room window is more than I can manage. I must lay down and close my eyes. As I lie still, waiting for the pain in my head to pass, I can’t stop myself from falling asleep. An hour later, I wake up, stiff-bodied and sore for no reason. I can barely pull myself out of bed to look at my phone. Once I manage to stand up, it takes two tries to pick the phone up without dropping it. Three missed calls. If they weren’t annoyed when I missed the first one, they certainly are now. I work myself into a fit of anxiety that leaves me vomiting in the bathroom through my tears. I sit on the bathroom floor for half an hour after I’m done, waiting for my husband to arrive home to help me stand up. My legs and feet have gone to sleep.
This is my life these days, and this will be my life for all of the foreseeable future. I suffer from a neurological disorder.
It was a slow onset. Dropping things and unexplained sleepiness came first. Then I became forgetful. I gained weight rapidly at the beginning of the onset, leading me to believe that my problems were simply related to getting fat. When losing weight didn’t help the symptoms and, in fact, seemed to make them worse, I finally decided to visit with a physician. A series of tests concluded that I was “sick forever” as my then-eight-year-old daughter used to tell people. It has gotten worse over the years. That’s not to say there aren’t good days. There are, in fact, as many good days as there are bad. The trouble comes with never knowing when a bad day might show up. Working outside of the home has become impossible. Working at home is an everyday challenge, as well. The struggle, though, goes far beyond even that.
There are certain societal stigmas to being “sick,” especially when your illness is not clearly visible to the outside world. I may be happy and alert and “with it” the night of my daughter’s orchestra performance. I may run into half a dozen people there that know me and will see that I’m doing fine. The next day, though- when I can hardly pull myself out of bed and have to miss a birthday party, or a dinner with friends, or a wedding- they tend to lack understanding as to why. “She was just fine yesterday,” one acquaintance recently told another. There is very little understanding that how I feel today or even this morning has no bearing on what this afternoon might bring.
I suppose, perhaps, it’s partly my fault. I hold it all in rather well. I put on a happy face and go about my life as if nothing is wrong with me. Then, when something is clearly very wrong with me, people don’t understand. They aren’t there at night when my children are scampering through the house, talking to one another in hushed whispers: “Shh. Mama’s head’s bad again!” They aren’t there when I break down crying in the doctor’s office because I’m only thirty-three and a lifetime is a long time to manage this.
There is no escape to chronic illness. There’s no happy ending. No doctor proclamations of “You’re in remission!” We must learn to tolerate the physical and make peace with the emotional, which is harder than many realize. How do you escape your own sadness when the source of that sadness is here to stay?
You learn to find joy in the tiniest wonders of your world. There are days when all I can do is sit in my yard and watch the creatures of my hobby farm exist. A duck splashing in a wading pool, a newborn goat learning to kick, a young rooster crowing for the first time: These are all important parts of my cure.
Then there are the orchestra concerts I can attend. There are the beautiful pieces of art that my shyest daughter creates for me and hangs throughout our home like a gallery. There’s the smile on my nephew’s face when he aces the test he studied so hard for. My seven-year-old stepdaughter kicking her soccer ball across the yard has brought me every bit as much relief as any muscle relaxer ever could. My husband’s arm draped over my hips at night won’t calm my chattering teeth, but it does calm my heart, just as a text message from my sister in the mid-afternoon won’t hold any magic instructions for wellness, but it does hold a reminder of the immeasurable love I have in my life and for this world that I exist in, however broken.
Being sick has made me strong. It has given me insight about the world I live in, even as it eats away at the body that holds me. It has been a great blessing in disguise. Once, I was a healthy young woman who could stay awake for days. I’d hike trails through muddy hills. I’d party with my friends. I’d drift from romance to heartache to romance as if that’s all there would ever be. I worried too much about the unimportant and not enough about the wonderful gifts that this universe offers us.
Then, one day, I began to feel my life slipping through my fingers and I began to fight to hold onto it.
This is how desperately I want to be here. Isn’t it wonderful?
Originally published at medium.com