In the all the years I had been sick, it was the name, not the healing, that I learned to hope would bring me away from it. I sought labels to bring to me a vision of health where I didn't have it, a grand and glowing 'after' to long years of reaching for health where there had been none. To root me to a place in the world that was knowable, chartered. Relief for so many years I thought would hinge upon a diagnosis and my ache was always for this. With the finality and knowability of diagnosis comes a trajectory forth. I learned to live without labels, learned to live with the body's dual offerings of possibility and constraint, with the understanding that the body is the way and the very thing that blocks the way. When I finally got that name, nearly two decades after when I might have first needed it, it brought me no more sense of relief than I had had before it. Even with a name I thought might contain it, a name, Lyme disease, that so neatly held together all those years of suffering for me, there were no edges to the agony, no clear shaping to where it stopped and where I began. In all the years I didn't know what it was, I became it.Read More
For so long I shied away from sharing my story.
I told myself I couldn't find the words. I told myself nobody would relate. And I told myself my story had already been written by others. I'd visit the More Than Lyme blog and read other people's stories and felt bolstered by the shared experience, and at the same time left out on the fringes as if the community was closed to me. As an introvert who is also terribly shy, I didn't know how to connect, to reach out. I became fearful of trying after becoming so isolated from the world around me, as friends stopped relating to the pain I was in, as they defined me by the disease, I started to define myself in the same way - by my lack, by the pain and isolation, by the trauma. I love reading everyone else's stories, and still feel that mine is somehow invalidated - that I always have words until it comes to this chapter - the lyme chapter. I stand in frozen terror. I want to take my power back, to take my story back, to connect, to change the narrative.Read More
The moments in my life where I have felt devastation most deeply and a cold run through me were the times I felt unheard. Unseen. Where I gathered every ounce of power within me to scream my truth but only heard an echo reverberate from the void.
I tell the doctor my legs feel numb and my legs can barely carry me. I handwrite a list of my symptoms: “SO tired, like, deeply exhausted, migraines, weakness, and the numbness I mentioned last time. Remember Maria, ADVOCATE FOR YOURSELF”. Even when I have my pain and discomfort scrawled on a sticky note, even when I state to the gentle-mannered physician with conviction “This is not in my head, trust me, I study brains!”, I am dismissed and left in the questioning. I don’t know, is it in my head? I mean, I’m told it’s depression. But I’m not feeling depressed. I know my thoughts can be cruel, but why would my head be playing these tricks on me for so long?
Since I was a little girl, I was fascinated by the magic of thoughts…Read More
I am here, again, with an enervating ache in my chest. Sipping air, careful not to choke on the Asian Pacific humidity, as fears of another health issue leave me scanning for the mercy of kind, accepting eyes. Instead, I find judgment in my own pupils. They burn holes through the mirror as I ask—audibly, yet rhetorically—“I thought we were past all this?” Over the part where I doubted my body’s intelligence and its inherent need for rest. Over the part where I let my fears run the show and juggle worst-case scenarios in my head like circus balls.
It was week two of my yoga teacher training in Chiang Mai, Thailand, and I was unraveling. I had come here with high expectations (and equally high anxiety): Return to the place where Lyme ripped my life apart several years earlier—and prove to myself how far I’d come.Read More
Often times our preconceived ideas come from a place of not-knowing. Of believing we’re in the right without taking the time to sit on the other side of things. To shift over just enough to see that maybe, maybe, things aren’t as they seem. People, situations, conversations, and places aren’t as they seem. That though we can claim we would have done something differently from someone else, we will never know as we are not them and they are not us.
The best thing we can do when making room for stories to be shared, is to listen. To simply listen, only responding when we are sure there is a gentle-ness surrounding our words and voice, hoping that in return, they will do the same as we share our experiences.
It really is a beautiful thing, story telling. It’s an opportunity to gain insight into a world very unlike our own. To join movements that we otherwise wouldn’t. To believe in something and advocate for it when before, it might not have even been on our radar.Read More
When People ask me how I stay in shape
I don’t remember what shape that is
These days hourglasses only tell me there’s no time for this
My thighs used to announce me before I did
But now that I’m thinner, I think it might be my soul
When you’re rebuilding your body from ashes “Bigger”’s not a goal
Like just adding rooms to a flooding house
So the water has someplace else to go
It’s suddenly so much more important to know how it works
And if you can really read abs like life lines
It makes you ask these questions about working so hard on something so Fleeting
Chasing strength on treadmills when you’re worried ‘bout it leaving
Like what does it mean to have a pretty face if you were born with it
And what does it mean to have a hot body if it’s gone with one bout of depression
Or when you’re finally content with just one person to love you