Sunday, April 24, 2011


True confessions: the last couple months have been pretty difficult for me. I’ve been largely silent on the blog, in part because I’d rather not write when I’m down. It’s too easy to cement feelings of frustration in words, building them into sky scrapers that overshadow all the gains made, all the good times that slip so easily from my mind when I’m down.

But today I’m going to admit to how hard it’s been recently: insomnia three or four days out of the week, headaches that have all but paralyzed me, and in the middle of it all, just as a little bonus, food poisoning. Yes, there are consoling thoughts, like my worst now is still so much better than it was four years ago, and the notion that this is a herx, that it must mean this latest round of antibiotics is penetrating deep into my system, perhaps into my brain the way Dr. Ross suggested the high dose of Amoxicillin would.

It’s just that as I approach the four year mark of antibiotic treatment (this July), the question at full volume is, can it really take this long? Evidently yes.

The second question, posed by a thoughtful reader a few days ago, is are you worried about all the antibiotics? Yes. And also no, because what good does that worry do me? One thousand times greater than my worry is my gratefulness for them. Thank you, antibiotics, for making my life into something more than an empty shell, my body into something more than a 130-lb prison!

And yet it’s been just plain hard these past two months. It’s felt like a prison again, although a more mobile one. The insomnia is horrible, and the worst is the time it takes up. Contrary to what you might thing, not sleeping takes time. So much time lying in bed, trying this or that combination of supplements, getting up to do a heparin injection, stopping on my way back to use the bathroom, lying down again, not sleeping, putting on headphones to listen to books on CD in case that will lull me to sleep, realizing twenty minutes later that it hasn’t and so deciding it’s now time to try some vitamin B, then fifteen minutes later more vitamin C, and then another quarter hour later the herbal drops the naturopath gave me last week.

All this while the Poet is in the bedroom with me, in various stages of sleep. I reach for all my pill bottles as silently as possible, but it hardly matters. Pills rattle, bottle tops squeak as I open them. Vitamin C fizzes as I mix it in water. The discman clicks and whirs when I hit play. The Poet often snores through it, but when my noise wakes him up I feel terrible.

So Saturday morning went, from six a.m. on. He was lying in bed reading, and I was busy not sleeping, having coaxed my body into slumber after midnight the night before. I didn’t know the Poet was hoping to read himself to sleep. I thought he was just reading, not minding my little noises that echoed all over our little room, until after an hour he said something.

By noon, when we had been up and dressed for quite some time, and pretending to ourselves we didn’t feel quite as crabby as we did, we started squabbling. But we’ve grown by leaps and bounds in this situation, and a full-blown argument did not ensue. Hooray for us!

And yet as we worked our way through our differences, heading towards reconciliation, I broke down and cried. It’s got to be tough for him, surrounded by this illness all the time. And yet this is where it gets tough for me. After all, I feel I’m about 40% an interesting, energetic person and 60% Lyme disease, percentages varying from day to day, of course. And how attractive can that be? I know there are so many women out there, and I worry the Poet will just get tired of me, or tired of my noise that keeps him awake, and say enough.

“I never imagined,” I said, “that this treatment would take so long, and that it would be this awful even when it's been almost four years. If I had known, wouldn’t have asked you to come along with me.” The tears slid down my cheeks as I talked.

“Oh sweetie,” he said. “I’m glad I came along with you. I don’t ever regret it, not even today. You’re such a rare, rare person. Nothing else matters.” Of every compliment he’s ever given me, this one meant the most. This is the one I will always remember.

“Sometimes,” I told him after kisses and a few more tears, “I worry that I’ll never get better.”

“Don’t think that, baby. You know how things have ups and downs,” he told me. “Illness is that way. Lots of things are that way. When people are working hard to lose weight, they have times when they gain a few pounds. And in the Egyptian revolution, there was a day when the enemy sent camels and horses into Tahrir Square. How crazy was that! So maybe this is your time of camels and horses. You just have to stand your ground and keep fighting, and eventually you’ll get Mubarak to stand down.”

So I’ve been telling myself since then. My time of camels and horses. I can hang tough, especially with a poet in my corner when it matters most.