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.

Advertisements

Running in the rain

Running in the rain used to be one of my favorite things to do. I start out and it’s cold and the drops are like cold spikes against your skin but as I go, I warm up, and the drops are soft and cooling against my skin. There is something to be said, too, for being out in the rain without layers of clothes against getting cold or wet, with my legs bare and shoes soaking wet and to still be running in it.

I say it running in the rain used to be one of my favorite things to do but then I got Lyme and couldn’t withstand getting cold, much less wet. My doctors ordered me to stop running because the blood-brain barrier becomes permeable to the Lyme spirochete with cardio. I didn’t run for eight years. I wrapped myself up in 700 fill down vest in 90 degree weather. I lived small and tight and cautious.

I started running again, a year or two ago, but I’ve been running as sporadically as I’ve been writing this blog. Then the rains came. The first storms had me running to buy rainbows, umbrella, rain gear to bike in. Clothes that would make me impermeable to the wet and cold. The next storms came rolling through and I went out walking in it, hesitantly. Would I get sick? Would my body collapse under the strain of cold layered over illness? Would this be the one thing too much that would knock me by the wayside? Nope. I’ve apparently tip the scale back from collapse to resiliency.

Then storms came through again this week and I went out running in them, without layers of ranger. Just me, shorts and the rain. Rain soaked my hair and ran down my back, my legs were spattered with mud and my shoes go so wet that I didn’t hesitate to run through puddles. I heated up and the rain was a welcome cooling.

My shoes are still drying in the hallway from yesterdays run and my tulips are blossoming in my window box.

Catching the Heart Up with the Body

When I was 24, first diagnosed with Lyme, suddenly living in suburbia with my parents and swallowing down more pills each day than I had taken my entire life, I couldn’t let myself fully know how sick I was. If I did, I wouldn’t have been able to keep putting one foot in front of the other. So I told myself, daily, that I would be back to life on my terms in a few months, six at the most.

Nine months later, I had a P.I.C.C. line in and was on I.V. antibiotics. I ate breakfast and dinner with my drip going. Still, I told myself that I would be able to pick up where I had left off from my life in NYC. Ok, I had told myself a year in to living back in suburbia, I’ll be back to life in six more months, in another year, tops.

But it takes time to get as sick as I did and it would take another decade to get fully better. Over the years, I spent most of my time and money and energy trying to get better. Over the years, I slowly stripped away symptoms as I unraveled the layers of illnesses. I lived a half-life out of necessity. My health, or my approximation of it, was in delicate balance. If I pushed too hard in any aspect of my life, my health would collapse. I felt like a house of cards and the slightest thing outside of my routine—a missed meal, a forgotten hat and scarf on a cold day, a too late night, relationship strife—would knock me down.

I spent a lot of time in bed, waiting. I held myself back from living as hard as I wanted to, telling myself that once I was healthy, I’d have everything.

During that decade of living small and contained, I told myself that I would have everything once I had my health. I told myself that it wouldn’t matter how little I had done over the years; once I had my health I could approach everything in life with the vigor I wanted to. Now I am where I once only dreamed of being and feeling. And though life without illness is so much better and easier and thought I am doing everything that I want to be doing, I am surprised to find that the underlying emotions for me are a dull sadness and defeat. It is because, only now, in being healthy, do I understand just how very sick I was and can I know just how much I missed out on.

I am surprised to find that I am not just living in a state of elated joy, which is what I thought that I’d be doing once I got better. I’d have everything, remember? Of course I have to work through the dull sadness of loss. I fill the time that used to be filled with taking care of myself with meditation and long walks and fostering friendships. I am taking it easy and gently this winter and making sure to cook up soups and stews and ciders that are rich in color, scent and taste.

Pain is your body in conversation with you

Pain can be scary. It’s uncomfortable and also indicative of something not right in the body but when it has no obvious source—not a burn nor a fall nor an accident, but just shows up, seemingly out of nowhere, and lingers, it can trigger fear and anxiety, interrupt sleep and make it harder to cope with let alone heal. Especially if you don’t know what to do to fix it.

 PJ-BB600_HEALTH_G_20110704185119I am no stranger to the downward spiral of pain creating fear and anxiety and disrupting my sleep. It begins with pain, becomes more pain and then fear that my body is disintegrating shows up followed by anxiety: am I injuring my body more? The fear and anxiety, I’ve noticed, usually cause the pain to intensify and spread. Lyme is a really painful disease. There were weeks when I couldn’t even walk for the pain in my knees and days when I couldn’t do anything but lay on my back for the spinal pain. At the time, I never knew what set the pain off and, until I was diagnosed with Lyme, no doc or PT I saw could figure out its cause either. The joint pain was so rough that it felt like, just by using my joints, I was contributing to their deterioration. For a dancer and athlete, this was a heartbreaking thought. I gave up so many activities I loved by the time I was twenty and just hoped that I would still be able to walk when I was thirty.

These days, my joints are stable, move fluidly and never even ache but I fully understand what so many of my clients are going through when they come to me because of pain and fear or with anxiety about “What is happening to my body?!”

When pain comes from a straight forward injury, it’s easy to understand and, as tough as it is to deal with it, you have a pretty good sense that the body will heal and the pain will pass. When pain comes from layers of muscular imbalance, skeletal misalignment, compensatory patterns, and inflammation, it can be hard to get to understand the root of it and hard to see an end in sight.

I try to disarm people first. By which I mean, to get them to unload the emotions around pain. We immediately jump to evaluating whatever state we are in: if we’re happy, that’s good. If we’re sad, that’s bad. If we’re in pain, that’s bad. What if, I ask my clients, you could just experience the pain? It is simply a sensation and assigning a negative judgment to it makes it worse. Uncomfortable, yes. Scary, possibly. But bad? No.

In fact, pain is an incredibly useful tool. It is your body in conversation with you. This hurts, it is saying, stop what you are doing because it’s not good for your health and survival. Pain if you touch your hand to a fire–you can see the immediate need to pull your hand away so you don’t burn it off, but pain in the low back from a lifetime of sitting isn’t necessarily as clear a direction. Pain will get you to stop and take a look around and see what isn’t working in your life, where you’re forcing yourself through situations that are hurting your body and make changes. The real trick is, do you stop and listen when your body speaks up? Are you learning how to listen to your body? It is yours, and you’ll be with it your whole life. If you listen now, you’ll be in better shape in the long run.

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.

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.