Friday, July 10, 2009


In early July 2007 I swallowed my first antibiotic pill to treat Lyme disease. At the time I had been sick with Lyme for at least seven years, probably longer, probably nine or more.

I spent most of those years lying in bed, gathering up tiny wisps of energy by means of elaborate breathing exercises, and pushing the wisps into a ball, so I could sit up for an hour a day and draw, then collapse back onto the nearest couch and start marshalling my breaths all over again. To pass the time I listened to NPR, and then every single book on tape I could get my hands on. Driving was too much, reading was too much, the noise inside a baseball stadium was too much. At times even walking to the kitchen was too much.

I stood on my feet only with trepidation, knowing that within seconds the dead feeling would be there, in my lower legs, and if I let it go on too long it would creep up my calves to my thighs and then the rest of my body, until there was nothing to do but cry from the pain of it and no way to get out of its stranglehold, not even with the most byzantine breathing or the most glorious meditation, no way besides waiting it out for the next few miserable days, in bed and aching, until brief moments of relief would come and go and coalesce into the bliss of just feeling OK, and I had one more chance to stay inside the lines, repentant now for whatever it was I’d tried to do—make a cake or walk over to the neighbors—and I would start gathering my energy again, keeping my sights low, thankful for my hour when I could just sit up and draw or sew.

And now here I am, after two years on antibiotics. I can walk anywhere I like, go the gym, spend the whole morning shopping and teach David to play baseball in the afternoon. I can read for hours and go to a ballgame. I cook dinner and grocery shop and clean the house, and at times I even remember to be grateful that I can do these last three.

When I first saw Dr. Ross and he told me I had Lyme disease, he said the antibiotic treatment would last two to three years. It seems at this point it will be three. Despite all the many things I can do after two years, there are quite a few that are still not possible. The main one is just get through an entire day without downtime and a nap. The other is count on a good night’s sleep. One huge change since I started the antibiotic Rocephin six weeks ago is I can function quite well on just seven or even six hours of sleep, so the insomnia is not the source of misery it once was.

Because of the Lyme-related tendonitis that flared up six months ago, there is a whole range of physical activity that is off limits to me, the ones I particularly love, like dancing and jumping on the mini-trampoline and walking up hills fast. But all in good time, I tell myself, I will be able to do anything I want.

There is one last thing that has not unfolded quite as I had hoped. As I started the antibiotics I knew it would be tough. I was right: there are myriad prescriptions to keep track of, and herbal drops to take and special drinks mixed up and a battery of supplements to organize. On top of that I find I need to go to the sauna every few days and take long walks and do yoga daily so my lymph drains. I have physical therapy and myofascial release therapy for the tendonitis and then the regular doctor's appointments.

None of these things is that bad, in fact some of them bring me a kind of mind-numbing enjoyment. None of them is optional either, and added all together they come out practically to infinity and there is scarcely an hour in the day when I can read, or write, and drawing is a thing of the past.

This is not what I had anticipated, not at least for year three. I had somehow told myself that as Lyme loosed its grip on my physical self, I would be able to write. At this point in the timeline I envisioned myself writing perhaps two to three hours a day, if not more. In fact, I saw it as a sort of heavenly time when although I didn’t have the stamina to go out and hold down a job, I would be happily at home, typing and thinking and taking blissful naps.

What I didn’t reckon on was that being able to write and having time to write are two entirely different things. Lyme may not be running my body anymore, but it is still running my life.

It’s a pretty weak complaint: not that my fantasy of recovering from Lyme didn’t come true, but that my fantasy of what it would be like while I was recovering from Lyme didn’t come true.

As for the first fantasy, I am far from giving up on that.


A special shout out goes to The Poet on this post. He and my mom have both been there for me when I needed them the most, my heroic mother during those years spent in bed. But these last two years it has been The Poet who has lived with me, who agreed I should move to his apartment before I started the antibiotics, who didn’t have to sign up when he went on that first date with me, who could have backed out any time, like when the Plaquenil made me hysterical or when I asked him for one more ride to the doctor, or for someone to give me an injection in the butt every day, he could have said 'enough.' Instead has stayed right where he is, has never flinched.

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