First, some business: If you're just joining us, would you like to read my Lyme story from the beginning? Catch up a bit by clicking here.
If you'd like to listen, I recorded an episode with The Dirbag Diaries.
Click here to listen to The Miracle of Darkness.
Now. On with the story.
thank you to Sarajane. Check your mailbox and enjoy your tiny treat at Trade and Lore!
I don't feel well enough today to write anything. I don't have any thoughts about it, either. So much of this disease is blank space. Staring up at the ceiling with nothing new to think about. Same four walls. Same bed. Same bathtub. Pain is frightening and certainly exhausting, but it's the blankness that I find to be the most agonizing. The world is streaming along outside the window, bright and humid, early summer, but time has stopped for me today. I have a feeling tomorrow is going to be better- it usually is these days. Still, it's been a year now that I've been sick. It does start to wear on you.
Dave took that photo of me the day that I was diagnosed. We had this idea that we were starting some new adventure, however macabre. We were curious, confident, ready to pull out all the stops. Grateful to have an answer, finally. My doctors suspect that I was infected nine years ago, and the funny thing is, I can read through this blog and see hints of it. Nearly a decade of troubling symptoms and misdiagnosis and finally we had an answer. I thought it was something worth posing for, brave little silhouette I was.
Later that night I called my sister in law in California. She heard my raspy little voice-
excited
little voice, I was
excited
- and she said, "Okay babe, from here it gets a little more complicated." But what does she know. She's only suffered from chronic lyme for years, and years.
A few weeks before my diagnosis, our friend Michael drove up the Carolina coast, checked himself into a motel and shot himself in the head. The night before his funeral was when I first noticed the rash behind my kneecaps. David called Erich into our room. I was lying in bed in my underwear. "Just turn over so Erich can see it," said Dave, because Erich's in medical school and he is our best friend, although Michael was his best friend. I rolled over onto my stomach, embarrassed, feeling like a little kid. Erich said it looked like poison ivy.
But the next day, as we were driving home from the funeral in a storm, we stopped at a gas station and in the bathroom's silvery, graffitied mirror I spotted the same red, blotchy pattern blooming up my neck and across my jaw. The skin was rough and raised, and it felt burned, like a hair drier held up to my face. That rash stayed with me for three months.
Then there was more, and more, and more, until we flew to New England and David propped me up on the papery examination table at an urgent care clinic, and two weeks later a chipper lab technician called and announced, with inexplicable triumph, "You have Lyme disease!" Sometimes, because of the timing of it, I joke with David and Erich that this was all Michael's fault. We resort to gallows humor. We say terrible things.
So began our big adventure, and I did sun salutations on a rock to show the world how feisty I was. The very next day our friend Taylor drowned. Erich called me in the morning, which is what he did the day Mike died, which is how I knew it was bad, otherwise he wouldn't call me in the morning. "Would you mind telling David," he asked, "I can't do it. I can't do it again."
So I call David at work and I tell him that Taylor drowned, this lovely young man who only knew how to kayak because David and Mike and Erich taught him for six years in a row at summer camp. David suggested that he go to Ecuador to paddle, because that's what David did when he was Taylor's age. Taylor went to Ecuador and drowned. I told David and he goes, "Does that mean he's dead?" I said Yes and David said Ok and hung up the phone.
Listen, I didn't know how to write any of this and I certainly didn't want to. But a few weeks ago my eyes turned yellow from the detoxification or babesia in the liver, and that sort of freaked my husband out. It's tricky to have an illness that is for the most part invisible, although I've lost 20 pounds which is a clue, but all in all David finds it reassuring that I look so normal. So when my eyes became a little jaundiced he didn't like that at all.
Here's the thing though, last week I wrote that some days I feel like this disease and what it's done to our life is not bearable. It is bearable but sometimes it feels like it isn't. I never wanted to write that before, because one does not want to invite pity. Pity makes a sad party worse. But I wrote it, finally, and the very next morning my eyes were white again.
I needed to get this out, the thing about Michael and Taylor. Nobody I know had a great autumn, we certainly didn't. Yes it does get a little more complicated. Perhaps you are safer as a silhouette with no features to discern. Hide. Although you know what they say about hiding. There's no place and you can't run now, either. Blame the bad joints. It is an adventure you were right about that. But you never could have anticipated the blankness that's settled between your ears, or the empty hours: not the sheer amount, nor how slowly they will pass.
If you're interested in helping me get better,
here is how, here is why, and here is how I'm going to say thank you.