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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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.

Lunar eclipse

From Mt Tam 9/27/2015Lunar Eclipse 9/27/15The first time I saw a harvest moon rising on the horizon, I was 13 or 14. My mom had just taken me shopping in San Francisco and we were driving home on 101. I saw the tip of its arc crest the horizon across the bay, a crazy reddish-orange color, and then slowly rise. At first, it seemed too impossibly big and the color, too rich, to be the moon. I watched it rise, stunned by its beauty.

This past Sunday we drove north and then up to the top of Mt. Tam. We hiked to a small outcropping of rock and sat and watched the sky turn gold then pink above the thick blanket of fog. The sky deepened, the day darkened, we ate our take-out Thai food and watched the wild turkeys until the moon rose, already in eclipse, above the fog. It looked almost transparent at first, a haze against the sky. A jack rabbit came by, its ears sticking up above the high grasses. We stood in the cool air and watched the moon develop into a red sphere. We stayed watching until the earth passed through leaving a sudden and very bright curve of light around the edge.

It is so easy for me to get caught up in my daily life that I don’t stop and take time to witness the earth around me—even though taking this time is the thing that grounds me, inspired me and brings me peace. When I stop and watch the waves or enjoy the sun or watch a moonrise, I invariably return to myself, shake off all the clutter of the things I need to do, and come back to that place of inspiration within me.

Dancing with Courage

I saw Alvin Ailey Dance Company perform at UC Berkeley’s Zellerbach Hall. I danced at Cal, and in my college years, I spent a lot of time at Zellerbach, watching performances and the rehearsals and master classes of the touring companies. My classes were held down the street, in an old wooden church at the edge of campus that had been converted into the most gorgeous dance space I have ever been in.
Alvin Ailey dancers are, of course, masters of the art. Bad ass masters of dance and they do what all good artists do with their art: move people. Sitting in the audience, the choreography split me open and I became, from my seat, courageous from the company pushing back at what I have seen as limits on my own ability.
There was a time that I danced so intensively that I had thought going professional was something I would try for but I began to falter in dance as I faltered in so many other parts of my life because of undiagnosed Lyme Disease. I was in so much pain at the time that it felt that any use of my joints was destroying them. It felt, in moving, that I was wearing them down with sandpaper. Of course, it was an infection of Lyme Disease, but when I was twenty I could hardly walk and had no answers. I’d been working with a physical therapist for months and was only getting worse. My physical therapist was stumped and told me that I needed to never bend forward again (seriously. To never bend forward again. As if a person could even promise such a thing. As if asking a dancer to permanently remove such a basic movement as forward spinal flexion was nothing). At the time, I acquiesced only because all I worried that I wouldn’t even be able to walk by the time that I was thirty if I kept doing what I was doing.
Movement is the purest form of joy to me. It is how I know myself; it is how I have always known myself the best. I started swim lessons before I could walk and gymnastics soon after. I took dance classes and springboard diving and soccer and I ran everywhere. I ran after my brother and his friends, I ran to the market for my mom, I ran with my dog. I danced nearly as much as I ran and I poured my babysitting and then lifeguarding money into dance lessons when my parents refused to pay for more than two a week. During the summers, I was at a dance studio every day. I organized my life around classes, practices and competitions and began to work with physical therapists when pain started creeping into my body. We all brushed it off as something that comes with dance, with contact sports and I had had some traumatic injuries, falls and sprains. Only I never really healed from them. I danced, though, until I wasn’t able to walk or stand for long periods of time, until it felt like bending my knees and spine was ruining my joints. Until my joints felt on fire from just being. I gave it all up before I was twenty.
About ten years ago, when I was hooking up to an IV morning and night yet was only marginally better from when I had moved back home with my parents, I also stopped going to dance shows because I was eaten through with envy at all the things I could no longer and perhaps, would never do again. At the time, I was barely functional and was filled with rage as I sat in the theater watching dance.
This time, sitting in the theater at the first dance show I’ve been to in nearly a decade, I was moved. In watching the dances, it felt like my limits were expanded. As if my understanding of humanity and of what I can ask of my body were opened up, tenfold. I felt courageous.
Instead of becoming immobile after that one physical therapist’s directive, I became a pilates instructor instead and, though going through the certification program flared up every single one of my aching joints, I became a more efficient mover and developed better alignment. In a blessed coincidence, I was diagnosed with Lyme Disease towards the end of my pilates certification and jumped right into treatment. I soon learned how much of my pain was illness complicating injury. I had injuries, many of them: ankle, jaw, nose, knees, spinal injuries. What Lyme did, though, was to complicate them. It slowed down the healing and added layers and intensity of pain to the injuries. Over the years, I have spent so much time learning about creating a balanced, fluid body and now have healthy, stable and completely pain-free joints. Still, I’ve resisted going back to many of the things that once grounded me and fed my soul. After last week, though, I think it’s time to go back to dance.

Gratitude

There was a time that, when I thought of myself, the image that came to mind was of an old clay pot, dropped and shattered and badly put back together again. At that time, I was in so much pain, I hobbled when I walked and was so tired that I became anxious at the thought of leaving my apartment. I was 22.

These days, I write posts on healing, on compassion for the body—your body and how to train when dealing with a chronic illness. As I write, I always return to the time that I was sick for understanding, for a way in, for compassion on what my clients and readers are dealing with in their bodies.

Yesterday, I wrote on pain and when I did, I remembered when the pain and the fatigue were hardly indecipherable from each other. I was so tired that it hurt to be awake; I was in so much pain that it exhausted me. I remembered, as I wrote, how weak I used to be, as if a strong breeze could take me down. As I wrote, I recognized how strong and resilient I’ve become and how the sick person I used to be is no longer true.

When I think of myself now, I have an image of a giant trampoline, of its ability to bend deeply to the blows of people landing and regaining its shape so rapidly that it throws them in the air again.

I remember how it used to be, when there was no end in sight of Lyme Disease for me, just an endless slog of days marred by illness. The end of Lyme finally came but it seems that I was so busy living my life that I hardly noticed it until it had passed.

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.