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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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.

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

Goals, dreams and the future: I have one again

Mt Shasta from Bunny Flats

It has been over two years since I climbed Mt. Shasta. It was my first hugely taxing adventure since getting diagnosed with Lyme Disease and I just absolutely fell in love with being on the mountain. Following that climb, I climbed Half Dome up the Snake Dike route, ran a half marathon and spent the rest of that summer on the trail. Winter came and my health brought my life to a shuddering stop. I stopped almost all physical activity while I focused on my health. Even after I came back, stronger than before, I held off from climbing and running and hiking. Lately, the accounts I’ve been following on Instagram are all climbing and mountaineering and they have awoken this deep desire in me, to live outside, in motion and in the mountains.

Northeast Book, Lembert Dome, Yosemite

I don’t want a building to live in in the mountains somewhere; I want to be in motion across them, up them, around them. This was my dream that I long ago set aside, let it gathered dust until I forgot about it.

As Lyme Disease took me down, I unquestioningly set aside many things I loved to do or hoped to do. I stopped dancing, running, climbing. I stopped traveling. I hardly worked, I rarely saw friends. I stopped these things out of self-preservation—I was that tired, that physically compromised that I unconsciously stopped doing things that were more taxing on my body than I could handle. Which meant that I stopped doing nearly everything beyond sleeping, eating and working. Once I was diagnosed, it was another story altogether. All I wanted was to live and to live hard but every time I tried to do more, I’d land up in bed again for a week or month or two, trying to recover. I was never able to make any goals into the future. Lyme made me live day by day. I was so overloaded with sick that I could never think past right this moment and what I needed to do to get through it. Tomorrow wasn’t promised to me.

Not that tomorrow is promised to anyone but healthy, it is relatively easy to begin to take it for granted, to make plans and set goals and move through the day to day as if you have tomorrow and tomorrow and tomorrow, laid out before you to fill as best you could dream.

In that time, I could barely see through right now to to tonight. I didn’t set goals. I had dreams but labeled them as such: lovely to imagine, impossible that they would ever happen.

Now, years later, I can count on tomorrow as much as anybody and I can set physical goals, which have been the most elusive for me. It is such a gift to be able to make physical goals again and also make goals set far into the future. A month ago, I watched the trailer for Meru and texted my boyfriend: I want to climb Denali!

He responded with a resounding: hell yeah!

Me: 3 years?

Him: maybe 5.

I think we can do it in three.

I grew up backpacking and camping and hiking and I just absolutely love the mountains. For the longest time, while sick, I thought I would never make it back to them and then, when I was in treatment, I forced myself to stop thinking about backpacking again, shoving down the yearning that rose in me each summer so as to not feel the one more thing I was missing out on.

When we climbed Mt. Shasta two years ago, up the north face, and it was astoundingly beautiful. Utterly, astonishingly gorgeous. Hard. Physically and mentally hard. Frightening too to be so high and the mountain so steep. But up there, watching the golden stream of city lights far below and the sun rise from beneath us and the stars so bright, I wanted more.

I can’t wait, not just to get to the point where we climb Denali, but for all the training: the runs and weights and the multiple other mountain training climbs that we will do. I will get my life in the mountains.

In the absence of fear

Half HandstandFor many years, pain and fear were my constant state of being. I had a slew of athletic injuries to my ankles, knees, hips and spine that never healed. Once I injured a joint, it became this weak link, flaring up with debilitating pain, even years after the initial injury and despite constant physical therapy. There were full weeks in high school when I had to crawl up the stairs because I couldn’t walk them. Just as suddenly as the pain came on, it would pass and I’d be back to functioning until the next flareup happened. By the time that I was in college, the pain was matched with fear. I saw how other people injured themselves and the injuries healed in a way that mine never did. I was terrified that I was witnessing the rapid and irreversible decrepitude of my body and didn’t believe that I’d be walking by the time that I was thirty.

Of course, the pain and dysfunction had little to do with my athletic injuries and everything to do with undiagnosed Lyme Disease.

Over the past years of treatment, I always prioritized regaining mental clarity over limiting pain so it wasn’t until I was several years into treatment that I could begin to pick up the pieces of my athletic past and begin to train again. Still, because my body was so very depleted, I had to be very watchful of how hard and long I trained, to prevent myself from collapsing for days afterward. Healing from Lyme has required incredible internal balance and a constant willingness to learn the subtle rhythms of my body.

Here I am, a full twelve years after diagnosis and it was only at my yoga class last week that I moved without fear for the first time. Only in its absence did I recognize the extent that that fear has limited movement: uncaged, I could explore the full expression each asana. For once, I didn’t cradle my ankles when seated, I didn’t hold myself back or move gingerly, a full beat behind the rest of the class in every motion, anticipating pain and trying to work within a limited range of motion to mitigate it.

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.