Remembering Eva: letting love in.

2010 was one giant year of Loss for me. Today I'm remembering someone who's no longer here in the physical: It's been a year and two days since Eva died of chronic rejection after receiving a double lung transplant for cystic fibrosis. She had two good years with those lungs. 730+ days of laughing and running and jumping and dragon boating and dancing and facepainting and skipping and juicing the marrow out of every moment she was given.

I've kept a livejournal for ten years, and stumbled upon Eva's LJ by chance after another livejournal friend of mine named Kristen succumbed to the ravages of CF. In reading anything I could get my hands on about the disease, trying to understand and find peace, I found Eva. This was in early 2008, long before the documentary began airing worldwide, catapulting her and her blog to international fame. Still, she seemed larger than life to me, even through the small cracked screen of my laptop. There was something about Eva. I left her a comment, said hi, I was a friend of Kristen's, I don't have CF but I live with another chronic illness, do you mind if I add you as an LJ friend? Eva's response was as warm as the characteristic red in her hair, and we became online friends, emailing occasionally, following each others' lives through our journals. Sharing poetry and support and tears. In the fall of 2009 I moved from NYC to the west coast, and we planned to meet. She lived in British Columbia, not far away at all. I couldn't wait. Then came the diagnosis of chronic rejection and its attendant plummeting lung capacity.

What can I tell you about Eva? If you read her journal you'll see right away how rare she was. It didn't matter if she was well enough to live on her own and work and skip down streets with her friends, or if she was hooked to oxygen and tubes in the hospital; Eva lived every moment to its utmost capacity. What I mean is that she loved. She loved harder and better than almost anyone I've known. After all, love is the reason we're here, right? It's how and why we breathe. Eva knew that. I'm not saying she was perfect, or that she was some mythical cardboard cut-out patient who always smiled and never complained. No, not even close, because that isn't human, and Eva was everything human, every hue, the spectrum of us, she embodied the truth of it all. And she shared that truth with the world. Eva knew firsthand that life is too precious to waste on grudges and hatred and petty judgments and the pervasive mentality of us-versus-them. Eva loved everyone. She gathered love like water, then poured it back into the world. She was a river. At the time of her death, she had hundreds of thousands of blog readers. People around the world willingly sat with her while she died, bore mass witness to her death. In her last days and moments, though she was often too weak to sit up on her own, she took the time and energy to remind us to pay attention. To remind us to love, love, love. Thousands of people who never knew her fell in instant love with her. That was Eva; she was pure love in human form. She wanted to leave a legacy. She has done even more than that. She left a celebration.

You might ask why I'm writing about Eva in a blog expressly dedicated to healing. After all, you could argue that Eva didn't 'heal.' But to risk sounding a little woo-woo, I think Eva was healed before she found this world. Eva was (is) a teacher. There is more to healing than the husk of the physical body. New-age wisdom wants us to believe we create our own reality, and in some ways, I think there's truth to that. Eva created the abundance of love in her life. She created her legacy. She didn't create her disease (that's where I part ways with the new-agers), but maybe there was a reason for it. Maybe something larger than all of us knew Eva wouldn't be Eva if she didn't experience every single one of the moments she lived and breathed, including all the years colored by cystic fibrosis. Including the nebulizers, pills, infections, hospital stays, coughing, difficulty breathing, uncontrolled weight loss, transplant, and finally, even, her transplant rejection and death. I can't say for sure. I don't wish to glorify cystic fibrosis or any other disease. Eva might've been just as rare and special without the spectre of CF looming over her life, and ultimately taking it. But she said many times that despite everything, she wouldn't change having CF. Because I knew her and know the incredible strength of her spirit, I believe that to be true.

Eva taught me that to be human is to love, despite fear, despite past hurt and abandonment. Somehow she loved through fear. Somehow she let love in again and again and never stopped, not even on her deathbed. I've lost so many friends and lovers since being sick that I've become terrified of any sort of intimacy or closeness. Sometimes my heart feels permanently stapled shut. When Eva was alive she offered a constant reminder to stretch open my heart muscles through the pain and stiffness of atrophy. But in the last year I've forgotten, over and over again I forget. I remind myself, remember Eva, then let myself sink back into the comfort of fear. That might sound paradoxical, but fear, like any other habit, turns comfortable after awhile. Like a stench to which you grow accustomed, stop noticing and then you wonder why no one visits your house anymore. Fear blends into the background like it was always there, a part of you, not a guest uninvited and overstaying its welcome. The box I've built around myself is what I know. I need to break through it, let myself live. It's not me anymore. I'm scared of so much, but I'm here, alive, and given what I've survived, I shouldn't be. Every breath is a gift. Every breath is another chance to love.

Love. Eva's version of love was real: what the word really means. 'Love' is overused in everyday vernacular, watered down to drunken declarations and sex and Hallmark and the things we cling to when we're afraid. But not when Eva said it. She meant love as that raw pulsating thing within all of us, the electric thread connecting us to every living being that exists, has existed, will exist. The web we spin with breath. Love that burns bright and shatters hard. Love that stays. Love we build again and again even when our hands are scraped raw and our hearts screaming for rest. The kind of love that comes from reckoning head-on with your own death, and then doing it again, and again, and choosing to get up and love longer and wider in the face of it. Because of it. The love that remains when everything we think we are - bone, flesh, brain, creativity, personality, identity, labels - falls away like sand. The stuff of us, the light we are - that is love. That is what Eva lived, it is her lesson. Listen close.
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If you're healthy and able, please become an organ donor. Do it as a birthday present for Eva, who would've turned 27 tomorrow: click here

first post.

I've been thinking of starting a public blog centered around healing for several months now. What's stopped me, you ask? Fear. Fear of documenting this process. Fear of being judged. Fear of not getting better. Fear of looking myself in the face with no masks on. Fear of my ugly, because we all have it. But fear's been ruling too much of my life lately. So here I am. Stripped and scared and without answers, but here. Willing to do the work, and hoping maybe someone out there will bear witness, weather the storm of their own healing alongside me.

Here's what I know about healing: Healing is catastrophic. It is terrifying. It is the eye of the hurricane unleashed. It is you, alone with every cackling inner demon, your betraying body, your hopelessness, the small scared child of you sucking her thumb in the corner of her bedroom. It is every thought you hate to admit. It is your face in the mirror after no sleep, makeupless, haggard, lit under bad fluorescent.

But sometimes, too, healing is a winding dirt road you'd never have otherwise found. There are dandelion heads the size of clouds on each side. There is sunlight and the landscape is breathtaking, when you can see it peeking through the hail sheets. Healing is a journey unlike any other. Most of us don't choose it, are thrown like ragdolls into its path. But once we're there, we navigate a new world, an Oz of sorts. No matter how much we long for our old selves, we'll never be the same. We can't go back. But maybe, just maybe, we'll come out the other side better than we ever thought possible. And maybe the journey itself is the most important part.
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I'm not sure how frequently I'll update this blog, but I intend it to serve as documentation of the dull and radiant little hurricane road I've come to know as my life. As background information, I'm 30 years old and healing from a near-lifelong, severe case of late-stage Lyme disease and coinfections. I'm also about to embark on addressing my PTSD, which is intense and seemingly intractable, and related to the trials and tribulations of living with this misunderstood illness for so long.

I'm honored you're here. Thank you for reading.
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addendum: This is my Lyme story, originally written anonymously but which I'm beginning to feel more comfortable sharing with the world. What I experienced might sound extreme, but there are thousands, millions of stories just like mine. The intention of this blog is not to educate you on Lyme disease, but perhaps my story will inspire you to do your own research. Mostly I'm sharing the link here as a starting point. This is where I've been. Now, to where I'm going.