“I keep sailing on in this middle passage. I am sailing into the wind and the dark. But I am doing my best to keep my boat steady and my sails full.” ~ Arthur Ashe
The past few days have not been among my best.
Physically I’ve struggled.
It started earlier this week, of course, with feeling good. I should have seen it for a warning… but at the time I thought it was fabulous. I had a welcome burst of energy. My mind felt clear. I was optimistic, even as I was getting bad news from my doctors. Even as I rearranged the deck chairs on my sinking ship.
I felt okay for three beautiful days. On the third day I became brittle. A crankiness pushed its way to the surface, and as fast as I stuffed it back down it seeped up through the cracks in me. A rash stippled my cheeks, shoulders and back. People mistook it for health and told me I looked well.
By nightfall I felt wired. But then I couldn’t sleep.
All night I lay in my bed, tossing and turning. Beyond exhaustion I greeted the day bleary eyed and empty-headed. Then I began to flush, and my skin shimmered and shivered as though it was lit up with white phophorus – burning with a bright cold fire.
Next came the sweats and the chills. The throbbing pain in my head. The familiar and awful pressure in my ears, and in my eye, which twitched and clouded until I could no longer see from it except through a fog.
The agony of herxing from my lyme meds, my lyme herbs, my lyme diet.
I’ve had seizures, gut cramps, profuse vomiting and diahrroea. My left hand has trembled so badly that I have been unable to write for two days.
Bright light has been unbearable.
And mentally, I’ve been down the darkest of holes. It’s been all I can do to keep my head above water. And sometimes I didn’t, and felt the burn in my lungs of a drowning woman, so broken she was almost out of fight.
Last night, finally, I slept.
This morning my hands are steady and my skin is cool. I’m empty and wrung out, but I can tell there’s been a shift. It’s as if a storm has passed and I have been washed up on the shore; firm ground underneath me, clear and benevolent skies above.
The light still bugs me. But I can wear dark glasses and a hat. (I am wearing them as I lie in bed to type this, my screen dimmed and the small bedside light angled away.) I’m still exhausted, but I’ll crawl back under the covers soon and surrender to sleep. The world seems kinder this morning and my heart has found a way to feel good about life again.
I’m three months in and counting. Only twenty-seven to go. I can do this. Two and a half years of treatment is a small price for the chance of reclaiming my health.
But don’t call me brave. Don’t say I am inspiring. You didn’t see me snivelling and sobbing over the toilet bowl. You didn’t see me broken and despairing and fearful. I am where I am, and I am doing what I have to do. I suffered many of these problems before my lyme treatment. And worse. I was on a rapid downhill slide. At least now my suffering has purpose. I am so sick because so many bacteria inside me are dying. War is always messy, and there will be collateral damage. I’m okay with that. It’s a relief to finally be fighting instead of gracefully accepting a fate I wasn’t ready for.
I value my life, and it is no longer enough to live so small, fitting my existence into that ever-diminishing box that is chronic and degenerative illness.
I want to know freedom, I want to know energy, I want to hold wellness in my hands, and to greet the day with a sense of possibility, instead of mustering gratitude for having survived another day.
After the storm, a rainbow.
After the storm, my life…
