It’s a blurry shot, but this past weekend I took my son on a hike to a fantastic waterfall. We climbed over slick fallen logs and waded through cool, fresh water. The air smelled warm and wild. He doesn’t know I have lyme disease. I can’t bear to tell him. Sometimes I think I should, but I think if I did my act would be up and I would sob helplessly at his feet.
I guess there’s nothing wrong with that. Nothing wrong with crying and showing the hurt.
It’s just I’d rather keep this daily nightmare of illness mostly to myself, if I can, while he’s at school. While he’s out in the world without me. Because late stage chronic lyme is a nightmare illness, and a nightmare is not meant to be shared. At least, if you can help it.
I must look completely normal to anyone who sees me out and about. I’m trying to look normal. But being basically house bound much of the week is not normal. The walls of this empty house witness me but they never tell what they see.
When I’m around other people, every moment of eye contact, every expression that crosses my face: I have a choice. I’m making decisions in the presence of others. What do I give to the world? My pain and agony and terror, or my love and determination and hope?
Love and determination. Sometimes the hope gets buried. But the love and determination are the powerhouse and that’s what I want you to see.
It’s only when no one is looking at home that I collapse at the top of the stairs because I can’t breathe. (Babesiosis: parasites that infect red blood cells and cause air hunger. You gotta love sharing your body with creatures that are having more fun with it than you are.)
Or I curl into the fetal position on the bathroom floor after the shower because it’s energy I don’t have to get dressed. Or I get lost driving to a place I’ve been to a thousand times because my brain is so inflamed. They call it brain fog. It’s less like fog and more like a panic and desperation that doesn’t have a natural metaphor. I don’t panic anymore. I reason it out. There’s a map I need to find in my mind. You don’t know how many maps you have in your mind until they disappear. I pull over, I make a plan. I drive again.
I can hide those things from every one except my partner. Who knows everything. And still loves me. Sometimes I can’t understand why, when I’m a shell of myself. When I feel so lost and empty. She sees something in me and I hold onto that with all my might.
Everyday that passes with my son is a day I can never have back. It’s just another day to me as an adult, but the days add up in a different way for him. My choices and actions are a major paint brush that colors the experience of his whole childhood. What a precious, precious, precious responsibility I have been given. I think about what I might do I were healthy. Then I do that thing. I can’t always do it. But I try. All I ask of myself is that I try.
I can collapse later. And I do. But I feel happy about my accomplishment.
These are the memories we will have. Waterfalls and laughing and my arms around him as I carry him through the cold, deep water. I love you, my sweet, precious boy. What an awesome adventure we had! I’m taking the very best care of myself that I know how to do so I can be here for you on this earth for a very long time.
And when you are old enough, and you want to know about chronic lyme, I will tell you everything.