Thursday, July 26, 2012

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.

Thursday, July 5, 2012


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.