Progress not perfection

I am just back from the climbing gym. Once again, I am suddenly climbing significantly harder than I have been: harder grades, more climbs in a session and a longer session. It is so exciting to move this fluidly and freely. Not just because I am progressing and progress is awesome (I am definitely a part of the “Aim for progress not perfection” camp!) but because, for so long, I couldn’t progress. For years, I never got beyond beginner level at anything: I could not learn anything new and I had forgotten much of what I had once known. This is your brain (and body) on Lyme. No forward progress. Having to learn the same things over and over and over. And the body, too. It doesn’t heal well, recover well and doesn’t build muscle memory. Lyme, besides the obvious reasons, is an incredibly frustrating disease to have. Everything I wanted to do, I plateaued at, but at the very initial stages of learning it. I don’t know how many beginning salsa, Spanish and guitar classes I took in the time that I was really sick.

Over the past year, I’ve been steadily getting better, in leaps and bounds, rather than in the meager and bitter steps forward I had been used to before. And climbing progress is a huge way of knowing just how much better I am. I have a few climbing trips coming up and I can not wait to see how I can do on the rock.

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Gaining Strength and Getting Better

Last night I climbed 5.11a* and b at the gym, grades that I never thought I’d be able to climb. Grades that I thought of as the gateway levels to solid outdoor climbing. Two months ago, I was just breaching 5.10a and two weeks ago, I began solidly climbing 5.10d. I am gaining strength and ability rapidly and it feels so good.

One of the classic tells of Lyme Disease is the inability to learn anything new or to be able to gain strength. When I had Lyme Disease, I felt like I was running in place. No matter how much I tried, my life was stagnant. I was too sick to go out so my social life was whittled down to a very few friends; I never took on a full-time work load, and; while I took salsa dancing lessons and Spanish classes and started yoga, I never got past a strong beginner level. I’d repeat beginning level classes over and over, never retaining anything I’d been exposed to before. It took months to learn the basics and I formed no memories of the things I was trying to learn beyond the basics.

Lyme Disease also challenges the body to such an extent that it doesn’t recover from workouts or injury and doesn’t build strength. I had no idea what I was missing until the past few months where I have flown through climbing and yoga levels. In the past, it would take me three or four days to recover from a never-too-challenging workout; now, I feel recovered and refreshed in half a day.

I’d started rock climbing several times during my decade of Lyme disease. I loved it but never climbed past 5.8. Two years ago, when I started climbing again, once I got to 5.9, I stayed there for well over a year. Now, suddenly, I climbing a level that had seemed forever barred off to me. Being well is incredible.

*and for those of you who don’t know, climbs are ranked from beginning at 5.6 and 5.7. after 5.9, they add in letters: 5.10a, 5.10b, 5.10c, 5.10d then 5.11a-d and so on

Fear, Lyme & Nairobi

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.

On Knowing Myself in Motion

I was on the wall last week and as I was working my way up a challenging route, the thought percolated up to me: I know myself best when I am in motion.

When I am climbing, as when I am running or dancing, doing yoga or pilates, capoeira or boxing, walking, biking, swimming or any of the myriad other sports that I have done throughout my life, my mind quiets and my whole self integrates into focused movement: I know myself best when I am in motion.

It is also when I love myself the most.

Which is why the hardest thing for me in the years I was sick with Lyme Disease was giving up nearly all forms of movement. When I was diagnosed, I was 25 years old and I was a mess. I was fully in third stage Lyme and could no longer read or write, could barely speak, routinely got lost, even in my hometown. I’d lost my hair, couldn’t keep any weight on, had had a migraine for four years and was so tired I didn’t leave the house for anything but work for six months. My doctors ordered me to immediately stop anything aerobic, as it opens up the blood-brain barrier and allows the Lyme bacteria to pass into the brain, where it destroys neural synapses, memory, coordination, decision-making, you name it. They also told me not to push myself physically, to keep my efforts under thirty percent, to take slow and gentle walks, to do restorative yoga, to make sure that my body had the energy to heal.

I wanted to get well badly enough that I stopped do anything other than walks, yoga and pilates, but I still pushed myself hard enough that I’d get fevers and be exhausted for a few days. As the seemingly endless years of treatment have rolled by, I’ve gotten better, then stagnated. Or relapsed. I’ve tried to start new things, a dance class, maybe, or trail running or even just getting to a regular weekly yoga class but I’ve always had to quit after a few weeks because I just wasn’t recovering, because each class or run seemed to build my energy deficit, I’d get sick again and then take a few months to get back on top.

It’s different now. I’ve been consistently climbing and in the gym. Instead of being destroyed my efforts and stopped them to get better, I’ve steadily gotten stronger—both on the wall and in my constitution. I am beginning to be able to add in other activities, to explore the limits of my body without fear of collapse and I remember that being in motion is, to me, the purest form of joy that I know.

I am beginning this blog for several reasons. I’d like to talk about getting, being and staying physically active with a chronic illness. Movement, being in my body in motion is, like writing, an act of discovery for me, the way I know and learn things about myself. It allows things to percolate up, usually about my understanding of healing and I want to share that. This will be a mix of personal narrative, with training and healing tips and write-ups of my exploration into the types of body and energy work available in the Bay.