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.

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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.

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.

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.