It has been years since I was in intensive treatment for Lyme Disease. These days, even though my body is healthy, I find that I am still trying to undo the ways that being chronically ill for so long changed me. I hadn’t even noticed when I began to build up my beliefs of not being able and stocking up on fear, even as they came to limit and define me during the time that I was sick. I am finally letting go of them.
Four years ago, I was out nearly every night of the week. I didn’t drink and I didn’t stay out late but it was destroying me all the same. At the time, I was better than I had been in years and I believed that I was as well as I would get. The life I was living was all the life I believed I could have and going out every night of the week, even though I would be gritting my teeth to not yawn on the dance floor, was my clawing, desperate struggle for life. In the mornings, I’d get up and struggle through the near-paralyzing fatigue, yawning through work and stagnating in every aspect of my life.
I still made half-hearted rounds of health care and an acupuncturist I was working with finally asked me, “How often do you go out?”
“All the time,” I said.
“You need to go to bed at 8pm,” she said, “You’re too sick to stay up to ten, eleven, midnight. And no drinking alcohol or coffee.”
I looked at her blankly. 8pm? That wasn’t even dinnertime to me.
The next time I saw her, we had the same conversation. And the following week. And the following, until I ceased to even hear what she was saying. One week, though, she changed it up.
“Just don’t go out on weeknights,” she begged me on a day that I was already calculating when I’d get some sleep against my work schedule and all my plans for the week, through to the weekend, four days later. It clicked and for the first time, I cancelled all plans that week, and the next and then stopped making plans during the week.
I completely flipped. As much as I’d been going out, now I hid under a rock. I slept. I took naps, slept late, stayed in. I stopped working out, at all, and rested. Three years later, I am so bright and have so much more energy than I’ve had in years. I still hardly go out and put sleep first. But I’ve also developed, without realizing it, an intense layer of fear. Fear of disturbing my schedule, fear of not getting enough sleep, fear of anything that might weaken my body and take me down again. Fear of getting sick again.
One of my best friends, one of the ones I used to be out with any night of the week and until all hours of night, is Kenyan and invited me to come with her when she visited her family. Before I was diagnosed, every time I had two coins to rub together, I was off to some part of the world or another. I moved frequently: Ireland, NYC, Italy, California, Costa Rica, bouncing around the world learning languages and having adventures, in spite of or perhaps because I could feel my body and mind disintegrating as Lyme disease pared away at my health. In the years since I was diagnosed and the seemingly interminable years that I was in treatment, I hardly traveled: a flight from San Francisco to San Diego knocked me out so completely that I was in bed for weeks. A four hour drive north meant I never left my hotel room the entire trip. I love to travel and had demurred on visiting her family in the past, always for fear of getting sick. For the way I’ve conflated financial poverty and poor health, my energy level and ability to interact with people.
This year I went. I flew into Nairobi and the next morning, was up with the sun, heading out with Blue Sky Adventures to go rock climbing in Hell’s Gate, three hours drive North West of Nairobi. I was tired, sure. 26 hours of travel and a ten hour time change will do that to a person. But I climbed seven or eight routes all the same, chatted with people and belayed all day. The next day I was up early again, to fly to Moshi, Tanzania and three days later I was heading back to Nairobi and then off to the Masai Mara for a three day safari. I was tired, but not destroyed. I never got sick, never had to limit what I was doing. Once I was back in Nairobi, I met up with my friend. We went out, staying up until five in the morning and then running around during the day. We bounced from her parents house to her sister’s to her good friend’s home. We jetted to Mombasa and ran around Nairobi and I never got sick. It was exhilarating to finally be doing the things I’d told myself that I couldn’t do, things I’d told myself I couldn’t do for so long that I’d come to believe that I never would be able to do them. My trip, as travels do, shifted my perspective about where I come from and what place I have in the world, but this trip also broke through my limiting fears and beliefs about myself. To come home with the new knowledge that I can, that I am able is powerful indeed.