Going backwards in order to go forwards, or: Trusting the process

Once again, I have had to sideline my life as medical appointments take center stage. It is so hard to trust that I am doing the right thing. I have mostly been doing really well for these past several years and, because of that, I’ve been moving and growing in so many areas of my life. Now, once again, I find myself putting these things to the side so that I can focus on my health.

Lyme and tick-borne infections are so hard to heal from. There is no one, established direct route to health. For me, it has very much been like peeling an onion: I deal with one thing and get better, only to discover another layer beneath that needs an altogether different sort of attention and treatment. I am doing so much better—the years when I spent most of my life in bed are long behind me and I hardly worry about flare-ups anymore. It’s been two really fun things that got me motivated to keep going: a trip to NYC and an upcoming trip to Kenya.

I’ve limited travel in my life for years, even though I love it, mainly because, since I got Lyme disease, it’s been really hard on my body. And even though I climbed Mt Shasta and Half Dome (up Snake Dike) last summer and was fine, when I flew to San Diego a few weeks after my Yosemite trip, I ended up in bed for days. So having many long flights looming made me realize that I needed to figure out what it was about travel that limited me so much. My Lyme specialist pointed out that all my symptoms coincide with a lack of oxygen, so I started Hyperbaric Oxygen sessions and my flight to NYC was fine. The flight was a breeze for me, I had no Lyme symptoms or even any fatigue at all. It was like flying used to be for me: just get on a plane and go. So I am committed to the hyperbaric Oxygen treatments in these final weeks before I head off to Kenya—I am so much brighter and more awake with them—but as I shunt the central parts of my life off to the side to make room for daily sessions (and lets face it, with getting to the office, getting setup, having a 90 minute session and then getting home, it’s a full three hours of my day), I find myself nervous and anxious about all the things that I am not doing: the book I am not writing, the friends and lover I am not seeing, my art projects that sit in a pile in my mind, wondering when I get them done. Schedule-wise, I am back to where I was years ago, when all I did was go to work, go to doctors’ appointments and sleep. These days, I am again running a narrow circuit in my life and the things that give me the most joy, the things that I value so much are left by the wayside. It is true, I know, that without health, I have nothing. I have experienced that already and this is why I am once more fully engaged in treatments that are working (and incredibly, without side-effects, if you can imagine that): because I know that I without my full health, I won’t be able to do the things I most want to do and enjoy and engage in. But it is so hard to be in the middle of letting go of the things that matter in order to take care of health concerns that don’t bother me in my daily life. It is hard to trust the process, hard to trust that I’ll get through these next six weeks and my life will still be waiting for me at the other end.

Six weeks isn’t long, I know, but it’s once again a return to where I was so many years ago. I was living in NYC when I was diagnosed and left to move in with my parents because I was so very sick. I got through so many years of sick with the belief, that somehow, when it was all over, I could just go back and pick up where I left off. And then I visited NYC last month, a full decade after I left, and finally had to face that I still fostered some fairytale belief that this whole Lyme diapause thing has all been a terrible dream. The city has changed; I have changed. I am no longer 24, my friends have moved on. So jumping into six weeks of treatments, six weeks of putting my life on hold, is terrifying. What happens at the end? Do I have to rebuild my life from the ground up? Intellectually, I know that this is an absurd fear, that six weeks is nothing, but in my heart, it’s me once again grappling with the world moving by while I sit and wait for my body to heal.

Hyperbaric O2 Treatment Number One

After the session, my eyes were open wider than they have ever been, I could not find a trace of fatigue anywhere in my body and my mind was awake and fresh and bright in the way that I am looking for but never find when I drink coffee.

I am pissed! Is this what healthy people feel like? Or could feel like if they took care of themselves? In this moment of brilliant mental clarity I am aware, more than at any other time, of how much I lost in those Lyme years.

I want to feel like this all the time.

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.