Please click on this link to learn more about Inanna House, a non-profit group that is trying to create a holisitc center where people with Chronic Lyme can go to heal. Lord knows I've been longing for this very place over the past few months! Even if you can't contribute, just clicking on the link and looking at their page can help their cause.

Thank you, Sarah, for all the work you have put into this.

APART TOGETHER

Written in the air between DC and Seattle, posted a few days later

It’s not easy being the partner of someone with Lyme. Fifteen different times a day I have to stop to take pills and powdered medicine drinks and injections. My nap schedule and medical routine make day trips and weekend getaways impossible. And when my Lyme came back in February and March, I dropped into flash depressions, crying at suddenly feeling too sick to move around, or wailing how about how horrific and lonely life was. Just all part of my symptoms, but difficult to be around and not take personally.
Add to that scenario the Poet’s own emotional journey, about things from his past that are mostly separate from me and entirely separate from Lyme disease. Recently, this aspect of his life has been busting into the center of our relationship, duking it out with Lyme disease over which is the most bad-ass of all. I’d been trying to give him the support and attention he deserves, but Lyme is so emotionally draining that I didn’t have much psychological fortitude left to spread around. For his part, the Poet was doing all he could to support me, and while succeeding more than I was, not quite managing either.

So at the start of April I announced I was flying back to my parents’ for a few weeks. He resisted, said he’d rather have me there and that I deserved to have love and doting kindness from him. What you deserve and what your boyfriend can actually give you are not always the same, however. I could see he was burned out. He wanted romance and spontaneity and I was giving him big, sexy pill packs. I couldn’t give him the kind of spontaneity he wanted, so I interpreted his push for romance as a need for things to just not be about illness. It was time for me to lean on someone else for a while.

My original plan was to go for three weeks, but at the end of that time the Poet told me he missed me and loved me, and he appreciated my wisdom in making the decision to leave and give him the break he hadn’t realized he’d been starved for. I was so wise, in fact, that he thought I should extend my stay in DC. It was a bit of a surprise, but also a relief. I was feeling better being near my mom, who is good at doing logistical things to make being sick much easier. In DC, I could make things all about Lyme, which unfortunately was what I needed.

So we agreed, with lots of affection, to be there for each other and away from each other. We phoned and skyped and texted. The Poet told me about his personal revelations, I called him up about the medical decisions I was making and talked over the questions I had while I worked on my memoir. We had many, many conversations about our relationship, what has worked and what hasn’t. We got to a level of greater ease and greater honesty. We read the same books (“A General Theory of Love,” which I highly recommend, and “Autobiography of a Face,” also excellent.) The Poet sent me orchids, I sent him freeze-dried organic peas. It doesn’t get any more long-distance romantic than that.

And now, after three months, I am on the plane back to Seattle. David is already there. I am on the high dose of my Lyme meds, Samento and Banderol, and will do all I can to bend my medical schedule so that I can function as step-mom and girlfriend in the evenings, after their camp and work are over. When David heads back to his mom’s, the Poet and I are planning a week long trip to Whidbey Island, or maybe Columbia Gorge. Somewhere we can be together and relaxed. We’ve already decided which books to read together, this time it will be Jorge Luis Borges.

SHORT PAUSE: CHASING THE HERX DAY 21

Yesterday I finished the first final draft on parts one and two of my memoir. I say "first final" because I'm sure there will be a second and third final draft, quite possibly a fourth. But the point is I made major changes based on feedback from someone who knows what she's doing. Up next is the third section. But before I started, I just wanted to say, "Hooray for me!"

I've been trying to make myself feel as sick possible on my Lyme meds, and I've found this to be a pretty unpredictable process. Yesterday, for example, I thought I'd feel OK, based where I was in my detox/medical schedule. Not so. Sometimes whole days are really rough. Other days I'll feel good for a few hours, then awful for a few, then good again.

Still, everyday I've had at least a half an hour when I can focus enough to do a little work on my memoir. For the past few weeks that's meant going through the manuscript and looking at just one aspect of it for coherence and consistency--how I describe a certain friend and tell her story, for example. This has leant itself well to the type of short windows of concentration I have right now.

The most important thing, which I have to keep reminding myself over and over, is that I can't put writing before medical considerations. Not now. I'm fighting to get my life back once and for all, so every decision has to be about hitting Lyme as hard as I can. I've told myself I have to increase the Lyme herbs, as tempting as it has been at moments to increase them slowly so that I can focus better on writing the next day, or have energy for babysitting my neice and nephew. But that's not where it's at right now. I want my whole life back, not just parts of it.

Still, it's nice that incidentally I've gotten a little work done.