What a Good Woman Does

This post has been sitting in my drafts folder since I wrote it last summer. It always felt too big, too messy, too vulnerable to share. It still feels that way. But I'm learning I don't want to die buried under the secrets that are crushing me. I've spent too long trying not to rock the boat, denying myself in order to do what I thought (think?) was necessary to keep the peace. Shame can't thrive once its spoken, and I have decided I'm not ashamed of my story anymore. This quote from Glennon Doyle Melton confirmed things for me. This is no longer my secret to carry. Its not yours either. But maybe some things need to be said so they can just get out there and breathe. Maybe this is a mistake, but maybe, just maybe, its the beginning of long awaited freedom.
...
"Don't you think there are some things you should take to the grave?" I thought hard for a moment and said, "No, I really don't. That sounds horrible to me. I don't want to take anything to the grave. I want to die used up and emptied out. I don't want to carry around anything that I don't have to. I want to travel light."
...

It's like a story, one that only makes sense if you start at the beginning. Problem is, I don't remember my beginning. It's like a black hole in my memory. I can feel the fuzzy edges but what's inside it escapes me.
...
I grew up in a paper hospital. Welcoming death and life in split seconds, I existed neither fully dead not fully alive. Each animalistic howl and fiber of pain medicated, drawn into submission by drugs and chemicals with names like Lexapro and Zofran. In this paper hospital, so minimized and contained in comparison to the outside world, kept safe and sterile in here as opposed to the germs, the danger of out there, I learned how not to trust my body. My body, inferior in and of itself, slipped under the hold of modern medicine. Now I'm grateful for modern medicine for without it I wouldn't be alive. Without it I wouldn't be one of the inbetweeners, existing halfway inside and half out, but very much fully dead. But modern medicine, the drugs, the interventions, the machines keeping me alive since my first moment of life, the constant scrutiny of my body by those who had gone through years of books and lectures to be told they knew my body better than I did, they took something from me. In exchange for keeping my halfways life, they taught me how not to trust myself and my body.
...
"There was an ache at this site as old as the world"
I plant myself on the grassy earth to feel connected to something. The vibrations in my body - what my sister is calling my bad aura - pick up on the frequencies around me and as I melt into the grass I feel a connectedness to every being who has ever lived that steadies me. Maybe its the hippie in me that feels secure in the arms of what the mystics call mother earth, soothed by all the death and life that has existed in this grass and under this sky. Maybe its the poet in me that believes I have so many untold stories inside me. Maybe this full ache inside me I'm trying to write out has existed inside the roar of many women. Maybe the earth reminds me of this. Of the holy hum, of the connectedness that rises up from my trauma, that we're all just vibrating off of each other.
...
It was April, maybe. Spring, but still greyish, muddy piles of snow on the ground. I don’t remember how old I was. It feels like forever ago. It feels like yesterday. It was a game – truth or dare, because the boys didn’t want to play ‘would you rather.’ I felt small and inferior, an outsider because I was a girl, so I went along with it. I don’t remember what happened first. I’ve imagined it in different ways – more or less horrific in exact correlation with my mood. I remember, though, the exact moment it started.

…

The next month’s come in bits and pieces. Like a collage, a hazy flashback movie scene. Spreading apart skin, shaking hands curling around body parts. His hands pressing down on my hips, my shoulders feeling more intimacy with concrete. A blanket fort in the basement of my grandparents’ house, my bed, his bed, the old chicken coop, the playhouse, under the blue sky. Again and again. Not just a game but a given. Not asking but demanding.
“Turn around, let me see.” I became only good for my “private parts.”

…

I held my breath. In the moments of his hands on my skin and in the ones that followed. He stole the air from my lungs, the voice from within, the fire in my belly, the softness from my face. Or maybe I gave them up in surrender, in fear. I stopped breathing, stopped moving, stopped living. The word ‘Spirit’ in Hebrew means breath, life force. I lost my spirit and I couldn’t even cry for myself.
I held my breath in the moment the curious, unwelcome hands of a boy touched my softest skin. I froze. Even my inhales and exhales felt like they belonged to him when I let them exist. So I stopped. I held my breath. Still I haven’t managed to release it.

…

It was a good number of months later before I breathed a word of it to a living soul. I just…forgot. The brain, as a protective measure, doesn’t let you remember the memory and I don’t remember what I did in those months. I wasn’t going to bring it up, ever.
When she asked me if he’d ever touched me, I lied about the damaged done. I immediately regretted telling. I felt like no one would ever understand. It was my secret. Telling it, I soon realized, was in and of itself a powerful act.

…

I got my first period on a camping trip. I bled through everything. I had awful cramps. I bled out my innocence, my girlhood.

A miscarriage is, by definition, an unsuccessful outcome of something, a failure, a collapse, an undoing. That word felt so exact for what I felt was happening to me. I named it after the season of abuse and mourned it furiously. Something died within me.

…

People believed him. It was dealt with quickly and quietly, no one asking me how I felt. My rights as the victim were constantly denied. I felt unentitled to my feelings. I learned that the only person I could trust was myself. Still the sacred act of telling became like an epidemic.
I told everyone, not only to see their reactions to my horrific news but because the act of telling became therapeutic for me. By saying it over and over, I could manipulate the telling of the story so it didn’t sound so bad. I liked the attention I got. Maybe I told because for me it didn’t feel real. Maybe I kept trying to justify and explain it to myself. The act of telling became more about me and my perceived inadequacies and failures than it was about what I was telling.
…

I swallowed God and religion back at age 11. And perhaps it was that lack of fulfillment, that mania from pursing my addiction without constant and consistent relief that turned me off from God.

The other addictions are easier to pin point, each accurately reflecting my growing self-hatred and desperation.
The days when I crumbled at the sight of a sandwich, counting calories, the razor blade, the pills, the porn, the men. Each boy, each drug, each behavior, they were all attempts to numb the strong anger I felt. My life became a survival act. My addictions, however destructive, centered around survival.

…

My life became dependent on the idea that I could make myself feel (and not feel) things. I got fat. I got skinny. I cut my hair. I cut my thighs. I flirted with strange boys. I poisoned myself. I threw up. I isolated. I tried to die. My body needed to be punished. I couldn’t trust it. All the feelings I felt were transferred to and inflicted upon my body. The pain, the sadness, the anger, it was all kept inside my body. I needed to release it, purge what he’d done to my body, or it would kill me.
I wasn’t an addict because it felt good. I wasn’t an addict because I loved getting high, or being an emotional rag doll, or inflicting pain. I was an addict because I don’t know how not to be. My body didn’t feel like a body anymore and I needed to feel it again. I was attached to no one, tethered to nothing. I wasn’t a soul or a person or even just a body. I was an ‘it’. And I learned you can only wander around empty for so long before you collapse. When a tree falls in the forest and nobody is around to see it, does it make a sound?
I am a tree.

…

I wonder what the secret formula to thriving as an abuse survivor is. Or are we all just lost souls, gorging ourselves on our own leftover remains as if our bodies were the thanksgiving feast?

…

He’d been killed in a car accident. Killed, not died, taking away any immediate speculation that he’d done it on purpose.
I fell to my knees on my purple yoga mat and howled. Something inside of me snapped. My body held together by the surviving act of hatred died. My heart formerly beating cold nearly stopped, freezing over. My thoughts were an ever changing contradiction.
Relief, then howling. Love, hate. Missing him and seconds later it would all come rushing back and I hated myself for my grief. When I left that room, my grief took on everyone else's. They told me how to feel. He was dead so no one spoke ill of him. I convinced myself it was true, that he was a great guy. What happened had been a mistake, that’s all. I loved him. His death revictimized me and I ran from it.

…

The dead boy couldn’t possibly be a monster. I called it a judgment error, a lapse in reason. It was a mistake, not abuse. I’d been so close, so connected to him. I should feel honored.
When the air inside the grief house got unbearably dense, I retreated outside. The air was cold, the snow hauntingly beautiful. I made it a few feet down the driveway before I collapsed. Inside, the strings of me snapped.
I felt left, abandoned, neglected. All of a sudden the world felt too big for me. All of the feelings inside of me were like a waterfall, rising only to plunge to their death, never to be seen again. I screamed over and over, “Dear God” and “I’m sorry”, “I love you” and “Come back.” I would have done anything. The feeling of being separated was so profound and vast.
I prayed for forgiveness repeatedly. Like I’d caused his death. Like I’d plunged a knife into his chest. And maybe I had. Maybe I had by keeping his secret and playing his game. I didn’t know any better then but in that moment it felt like an admission of guilt.

…

When I saw his body, so pale and lifeless, I ran to the bathroom and threw up. I’ve spent the past 2 years running.

…

I went to a concert tonight my friend put on in a coffee shop. As he sang I looked around me. I held in my hand the hand of the man I love. I’m surrounded by so much love and hope and creativity and light. So much of what I’m only now learning is possible. I’ve spent so long running, numbing, constricting, isolating, denying, punishing. I spent so many years dressed in shame, wearing it like a monogrammed robe. “My name is…”

But that, all this, isn’t the end of the story. Today, this love, that is how I have decided my story will end.

 

(You can find the song this post was named after here)

It's about your desire to flatten your life. It's about the fact that you've given up without saying so. It's about your belief that it's not possible to live any other way -- and you're using food to act that out without ever having to admit it.

I’ve held the belief for a good number of years that the rigid eating patterns surrounding GSD were similar to the rigid eating patterns of an eating disorder.

If you asked, I could quite easily tell you a list of "good" and "bad" foods. I remember the early days of not eating, of sticker charts on the fridge and for every meal consumed I got another sticker on the chart, and when I got to a certain number I got a treat. It was a desperate attempt to get me to eat something, and yet it was possibly the beginnings of my issues with food.

I remember the exact day I started eating. People praised me for it. "Look at you," They would say, "Guess you finally just wanted to be like the other kids. I can tell people there's hope." But for me eating wasn't about being like the other kids. It was about control. Some people stop eating to feel in control and I started. There were times I would wait for my parents to leave just so I could sneak forbidden snacks out of the pantry. I remember the time I cried in front of a turkey and mayo sandwich. I knew exactly how many grams of carbohydrate and protein I should be eating at each meal, and became skilled at calculating in my head the exact number I should be eating. I hid fitness magazines under my bed, idolizing the skinny models with flat stomachs, free from g-tubes and scars. And still they called me a victory.

I also remember the day I stopped eating. The memories stored in my body became too painful. And in a way, it was an act of giving up. No more food, no more mental agony, no more sickness. I felt like a dog who had curled up under a tree to die. I looked at pictures of food on pinterest with envy. I admired the foodies. But for me, food had lost its joy. It had become just another thing that sucked the life out of me. It was always a means to an end, never being able to eat simply to feel pleasure.

We eat the way we eat because we are afraid to feel what we feel

Recently, with my current health issues, I've had to readdress the way I relate to food, and to myself. I knew as I began to work through the things I was hearing and processing that I wanted to write about it, but the moment I sat down to put pen to paper my hands began to shake.

I remember long car rides where I would imagine addressing a room full of people about this issue. I would say that food can be healing, that its not the enemy, that just as important as physical aliveness is mental wellness. I would speak to them as if I had overcome this issue and made some ground breaking discovery. Which leads me to the realization that even at a young age, I knew there was something wrong with the way I was relating to food, and that I still had the small spark of desire in me to fix it.

And.. are you willing to go all the way? To understand that food is only a stand-in for love and possibility and spirit? Because if you aren't, you will get caught up in gaining and losing weight for the rest of your life. But if you are willing, then the portal to what you say you want is truly on your plate

What I really want is passion, and pleasure, romance and adventure. What I really want is a life of spontaneity and indulgence. And I live in a body that feels as if it has robbed me of all of these things. It is a demanding time keeper. I say I have all these issues surrounding food, and what I mean to say if I feel controlled by this force that is both me and not me. There is no joy, no marvel, no intense flavour when I sit down to eat. There is forced, coerced nutrition lacking vibrancy and zest and life. There are rules, and white powders, and necessities. And at times I think this way of relating to food is enough to kill me. It is enough to make me feel uneasy in my body time and time again. It is enough to make me feel separate from myself. When I say food, I mean this illness. Funny how in my mind they have merged into the same thing.

At some point, it's time to stop fighting with death, my thighs and the way things are. And to realize that emotional eating in nothing but bolting from multiple versions of the above: the obsession will stop when the bolting stops. And at that point, we might answer, as spiritual teacher Catherine Ingram did, when someone asked how she allowed herself to tolerate deep sorrow, "I live among the brokenhearted. They allow it"

 

quotes from Geneen Roth

Fragile Hope

This morning I got out of class early enough to watch the sun rise over the trees as I practiced yoga. Last night I stood around a fire with some of my friends and we told scary stories and laughed until our toes froze and then after I crawled into bed with friends and we read books and listened to accordion music on an old cassette tape. A few days ago I crawled into bed wearing only a bright red, extremely oversized mickey mouse tee shirt I stole from my dad and wouldn't get rid of, knowing that I had saved this shirt for an occasion such as this one, and that perhaps that was my little girl heart refusing to give up on a dream that was now, in the most unlikely of ways, becoming a reality.
I've been thinking for a few days how to write about this part of my life. I spent months in the thick of illness, the rough middle of grief. Life felt like survival, where every action was focused only on keeping me alive and everything narrowed, like a funnel, all pouring into this one thing.
And then there is the magical moment when the treatment begins working. I'm a bit hesitant to write out the word hopeful but I am. For the first time in months, with this new schedule and new drugs and my ability to remain stable for longer than 24 hours, I feel hopeful.
This hope I feel, though, is also dark. It's bright but the light hurts my eyes. At times it is overwhelming. And I wonder what to do with this, as I have emerged from the woods, rubbing my eyes as they adjust to the light and banging the mud off my boots and smoothing out the tears in my clothes, left with only the scars from the battle.
I've learned to operate under extreme amounts of stress (albeit not well) and the changing in that pattern has left me feeling almost empty. I don't know what to do with this space inside of me. On one hand it thrills me, and on the other it leaves chills running up and down my spine.
And are there even words to convey this hopefulness right alongside the intense fear and sadness and grief that still remains? There is this bright new thing unfolding before me, but still when I close my eyes or when I run my fingers across my skin there are scars from what previously unfurled.
I am more aware of it now, like walking with a limp. I was writing an email to a friend today and I realized I can't very well recount the purely scientific details of what happened without feeling emotional. I feel the weight of it on my shoulders still. People ask me how I am and I can only say I'm improving, because I am, but there is no language to convey the state of my heart.
How at times the realization of everything that happened feels like it will suffocate me. How sometimes I still feel sad. How I always feel this empty space inside of me now, and how it will take time for that to become my new normal. How I am still trying to recalculate how I feel in this environment and in this body. How I still feel small, and fragile, and vulnerable, like I need to cling tightly to the people and things around me because if I let go for even one minute, I will drown here.
I am hopeful, yes, but it feels as if even that is made out of glass. Fragile.

the animal

There are days when this whole thing feels primal. I write in metaphors, but only metaphors about a wolf with a thorn in its paw, how my first reaction is always that with a degree of ferocity, that my hands shake and my head spins and it takes me back to this place inside of myself that I can't control with reason, or logic. It is the deepest part of me, the most animalistic and raw, the most untamed and wild.
There is an ache at this site as old as the world
For a sense of overall well being, it has been said that people need to feel safe in their bodies. I heard this line in an interview I was listening to with Bessel Van der Kolk, who researches trauma and the effects of traumatic stress on individuals, and it took my breath away. I was on my way home from the hospital, after an encounter lasting months on end that had left me feeling unsafe and assaulted within my own body. I have been searching for all of those long months for language to describe this.
Trauma is stored in the body, and at times, if I sit very still, I can feel the roots of what is happening to and in my body in trauma. It is a traumatic relationship with my own body, and I lack the words to explain what this means for me, and the ripple effect it is creating in my life.
How is it possible to feel traumatized by one's own body? And yet because of this experience, I have begun to recognize myself as separate from my body. I feel separate from this skin, as if it is only a vessel that houses my being. There are days, more often than I would like to admit, that I feel trapped by it. The fact that there is so much immediately surrounding the core of my being that is out of my control is terrifying. At its best, it is primal and animalistic and messy and loud, full of shrieking and roars and midnight howls. I have become an animal.
There are also times when I feel a distinct partnership with my body, but still then my efforts to relate to it are as if I was relating to another being outside myself.
I think that's the hardest part about illness, or particularly my illness in my body. It separates me from myself. I am both myself and not myself. I am trapped within myself, unable to recognize this body as part of me and unable to control it. It moves and acts of its own accord.
This primal noise escapes whenever I open my mouth, the scream that trauma built.
I have been known to participate in things that bring me back to my body, to a sense of feeling. Yoga, meditation, kissing, touching another person however innocently, even holding my own hands, music and sounds and words, a desperate search for anything that makes me feel remotely human again.
That's another thing illness stole from me: the ability to be human. I have become this creature, this other. My blood sugar rises and falls like the tides, seemingly defiant to every attempt at getting it under control. I sleep (or I don't) and I eat (my body relentlessly greedy in the pursuit of nourishment) and all of these things happen separate of emotion, perhaps leaving no room for emotion, and when the earth gets still I can feel the animalistic core.
Sometimes I write just to hear the sound of my own voice.
I look in mirrors to make sure I still exist.
I feel like an animal, acting out things that are so primal and basic, eating and sleeping and forcing nutrients into this body that I am helpless to control, that acts as it wills without warning.

It has been in the last few days that I have really begun to sift through the layers of trauma that have built themselves a home in my body. I had grand ambitions of sitting here and writing out where I've been over the last number of weeks (it seems that trauma gives me an unquenchable thirst to write) and yet sitting before the computer screen, my fingers moving over the keys, all I feel is inadequate to handle such a task.
I wrote an update letter to my friend today, beginning it with "These are just the facts, someday I'll be able to tell you the emotional side of this story." And that's how I feel. I feel like these moments are very much about my acute, physical need and that to begin to dig through the emotional trauma buried beneath the physical would be too big a task.
I have a file on my phone, thoughts and bits of wisdom from doctors and friends and random things I heard that I have been meaning to sit and work through, and yet I sit here unable to begin to dissect any of the layers of this traumatic experience.
In a recent interview Andrea Gibson did, she talked about how there was something quite freeing in speaking to an audience while she was onstage at a poetry slam and saying exactly what she was feeling. If she was anxious, or nervous, or afraid she spoke it from the stage.
And as I begin to try and sort through this mess the only way I know how, I must begin with what I am feeling, if I can put words to such a thing.
I am afraid. I feel vulnerable in the sense that I have been stripped bare, that so much of my life in these days has been displayed for the world and it able to be judged, or commented on, and there are so many varying opinions on what I should do that I have forgotten the sound of my own heart. Or bigger yet is the idea that I picked up that my heart is not something to be trusted.
I returned back to normal life after a short hospital stay (one for which I had high hopes that went unmet, that illuminated just how big and scary and unknowable this diagnosis is) and upon returning was brutally thrust into people and conversations and inquiries. I should be grateful for this as it is a sign of care but in moments it feels intrusive and blinding. I am grateful for the concern and love from those around me and yet I need time to orientate myself with the world once again, and not the old ways that I once inhabited but this new way of living. I want to wrap those I love around me and sink into warmth, huddling together against the storm. And the lack of this, despite care being given, feels cold and at times cruel.
I find myself hopeful in spurts. The hope of a new treatment, a new possibility leaves me feeling comfortable only to have the small thread of hope cut with each failed possibility. There is grief that exists in crevices I have not yet been able to reach alongside the raw emotion that spills out without warning and while at times I want to feel the bulk of this thing that is happening to me I am also grateful for self preservation. The brain's job is to protect the body, and while the physical ailments (relentless as they are) don't seem to be able to be contained, my brain is protecting this small thing. the feeling of grief existing inside my body is new, heavy and uncomfortable, and at times I want to collapse under the weight of it. It is a mysterious thing to not feel safe within your own body.
And still this trauma doesn't only affect me. I see it in lines on the faces of those I love. In a way I feel entitled to that grief, want to roar when someone mentions it as their own, and at the same time I feel helpless to prevent its rippling.
As I was driving home last night after a crash, feeling the weight of all I have lost, I thought that anything would be better than this. Give me an illness for which there is knowledge, give me physical pain, give me heartache. and yet if we saw the problems of others, we would long for our own. and yet, with hearing the story of a friend's grief today, I realized that grief, while a solitary thing, is collective.
I wonder if I begin to speak these words, if I can rattle the chains of the trauma. Perhaps this - what I am feeling- will begin to tell the story not only of physical medicine but of narrative medicine, of grief, of the human condition.
this summer I went through an intensive process of re-learning how to love myself. grief in and of itself is because of love. I wonder, even if I don't feel the roots of love right now, if this feeling and telling and grieving isn't also a part of loving myself.
"I was made to breathe and move and give, which is to say love. love. I was made to love."

I believe you

"I'd love a 5 minute spoken word poem that said 'I believe you' over and over."
There are the dark, ugly things inside. The things people don't talk about. The things I don't talk about because it feels like this soft, fragile outer shell and I am afraid even one wrong move will crack its gentle interior.
I used to write openly and perhaps what some would define as bravely about my struggle with chronic illness. But the bold days of undiagnosed (where I had to write to give this thing a voice and the only other option was to be suffocated by it) have faded into these days of knowing exactly what this monster is lurking inside your body but being unable to fight it because it is both in you and of you, and I of it.
Some days I am wildly accepting of this truth in my life. I accept that my illness has created this order, even if it looks like chaos to me, and that rather than rage against what I cannot change I must find the courage to embrace it. I accept that some parts of my body look different than others, the same way leaves on the trees are different shades of green and yellow and red, and yet we do not yell at the tree for having such colors. There are days when I can settle in with my breath, in this body, when I can whisper to every single cell in my being, "Show me what you have to teach me today."
Those are my becoming days. It is on those days I feel strong, feel like I am doing this whole life with chronic illness thing right.
But there is no guidebook on living life with a chronic, genetic illness that is both in you and of you and at times feels like it has it's hands around your throat. And I am not always accepting of this reality.
There are days when the anger inside me bubbles up, and I cannot contain its strength. I am angry at this body, at myself for not protecting myself from this unknown invasion, at my emotions for daring to feel the heavy brunt of this load, at the world around me and the sun for daring to shine and people for daring to smile and my friends for talking about skating on frozen ponds and crushes while I am confined to life inside this body.
I suffer from the need to be near to people, find myself clinging to their warmth and security when I feel I cannot muster up my own. The ones closest to me, I turn their bodies into blankets and pray it will keep me from this oncoming storm.
And I am afraid. I am so afraid and I wonder how it is that I can be afraid of myself. There are times in the night when I wake, my breath caught in my throat, unable to think or make a noise, unable to escape from living inside my head. The night is worse, when panic runs wild and I cannot distract myself with the regularities of the day.
There is sadness too, the kind that makes me want to stay in bed all day with the covers over my head. Because my life has changed drastically and sometimes I am unable to cope with everything I have lost. I at times feel hysterical (though according to Eve Ensler, "Hysteria is a word to make women feel insane for knowing what they know.")
It is a world I don't expect anyone to understand, one I don't even understand myself. And yet I feel as though I have to defend my right to live in it. With no one around me understanding the depths of this, I must scream out my own feelings and fight my own battles and find courage to keep getting back up and daring to live life in a world that has repeatedly assaulted me over and over again even when I feel there is no courage, and at times I feel too small an animal to handle these tasks.
It is lonely, in this neck of the woods.
When I heard these words from the poet Andrea Gibson this morning, tears pricked my eyes. How wonderful it is to know that another soul on this planet has felt, and desires, the same things I have and do. They are the words I long to hear, as my hands shake and the emotions cover and I am gasping for air and sense in this maddening world. And as I crave them deeply, I say them back to a world that has not given me them as many times as it should have: "I believe you, I believe you, I believe you."

An open letter to my doctors

I want to tell you something.
See, I'm not very good at math. I barely passed high school math class (and by barely I mean scraping by with a 52%) and the very idea of chemistry put knots in my stomach. I never understood numbers and letters combined with numbers and graphs and formulas. I do know that you plug numbers or letters into this formula and do all the right steps and on the other side you're supposed to come out with the right answer.
I've never been good at math, but I do know something about creativity. I'm a writer. I spend hours analyzing conversations, observing people, studying every tiny detail. I pick up on things normal people don't pick up on because I know how to look for them. In fact, I've written poems about the sound of your shoe. I make stories where sometimes there are no stories, but I guess then I would also have to argue that there are stories everywhere if you know where to look for them.
That's the difference between you and me, I think. You spend hours pouring over charts and lab results, plugging numbers into a formula and then graphing a picture of how you think things should be. And I spend hours categorizing each separate emotion and reaction into a different shade of purple, pouring over old stories and new poetry until finally stumbling upon the realization that sometimes you have to make your own stories about how things happen.
Sometimes there is no formula, and I know that's maybe hard for your scientist brains to believe. But I believe there isn't an exact science for anything, only many different shades of grey.
Akira Kurosawa once said "to be an artist means never to avert one's eyes."
I don't get the pleasure of averting my eyes. This pain stretches out before me and you try and plug it in to a formula and analyze it. I, who have been trained to absorb it and internalize it and regurgitate it out in the form of a story, instead turn it into a myth.
The sleepless nights, the cracking of joints upon rolling out of bed in the morning, the anxiety knot that sits in the pit of my stomach without ever fully going away, they all tell a story. They don't tell a story that's in any of the books I've read, so I'm doing what all good creative types do and going off the grid, writing a story of my own.
You are taking my story and plugging it into something I don't fully understand. You speak to me in all your fancy formula words, and they mean little to me because you are speaking a language I don't understand. I am the writer of myths, the house of stories, the mother of pain, and right now I am afraid so I need you to speak to me in words I understand. I know that its easy to avert your eyes from this part, the messy part, the part where all of these plot twists don't fit into that nice, fancy formula of yours, and believe me I wish I could avert my eyes too. I understand you're trying your best to give me answers, but believe it or not sometimes that's not what I need.
I need to not feel like Frankenstein's monster. I need you to put down your analyzing tools and your critical judgement calls for a few minutes to look at the story. I need you to understand that sometimes there are stories that don't follow an outline, patterns that cannot fit into your formulas, and I need you to reassure me that it is not I who failed the treatment, that it is not I who have become Frankenstein's monster. I need you to stand by your man, because that is what you do, even if your man doesn't end up the way you thought he would.
I need you to look at the bigger story, not just the graph of symptoms and problem areas. That's one thing I'm learning here at college, that you can't pick some parts and throw away the rest.
I guess what I'm saying is that I understand your medical brains don't work in terms of stories, but mine does. I am making a story to make all of this make a little more sense to me, seem a little less scary and threatening. It is in the stories you write yourself that you can talk the monster down into becoming a mouse. And I need you to put down your fancy words and charts and realize that you are dealing with a person, not a patient number. I need you to stand by your man. I need you to, at least for a moment, entertain me and my crazy idea of myths because its all I have.
I need you to, for a moment, not avert your eyes. I need you to, for a moment, become an artist. Look up from your charts and see the person on the other end of it all. Maybe for a moment wear the hat of a myth maker, a story teller, a crazy poet who finds details in the sounds of shoes (I can teach you if you want). Let me become your muse.
Because I promise you, there's a lot more story here than what can fit into your formulas.

In Five Years Time

It takes ten times as long to put yourself back together as it does to fall apart
I know what day it is...
Because at night I forget to sleep.
Every year, like clockwork, more than any other night of the year, on November twenty fourth I lie awake, tossing and turning.
Inside the cells of my body, somewhere, I imagine is the memory of it all. Folded up nice and neat like origami and pressed into the corner. And every year on this day, more than any other day, it is unraveled like strands of DNA that are pulled apart in order to separate.
It was five years ago today...
Even though the immediate danger is gone, the sting still lingers. Absentmindedly I reach for the scar on my neck, the one I relate with confusion.
Because five years later and I still don't understand.
I don't understand how things were fine, until they weren't.
I don't understand everything I went through in those days when I was fighting for my life.
And I don't understand why I'm still here.
...
My dreams are haunted now by the things I've seen, the things I've experienced. I remember very few days when I've awoken feeling like I actually slept, when I haven't been restless or awoken in the night paralyzed with the fear of something I can't remember, or something I can.
I guess that's true of every battle, that when you come out of it it's not without a price.
...
It's a one of a kind feeling to have someone you've never met stand on a stage in front of hundreds of people and say "This song is for a special girl," and then sing a song for you while all those hundreds of people cheer and scream your name.
It feels something like being a rock star.
Thanks to two very amazing bands, I got to know what that felt like.
It's an amazing feeling, one I'm sure I won't soon forget. One that wrapped around me like a blanket and whispered in my ear, "It's ok, now. You're ok. You're here, and this, all that you don't understand, it matters."
It's someone you've never met telling you "I'm in your corner. We're supporting you, every step of the way."
It's stitching the cuts in your soul with guitar strings and piano keys.
...
I don't think you can walk away from something like this unscathed. It changes you. Everything I've been through has changed me. The pain, the death, the unknown, the fear, the people you feel like you should have been able to save, the survivor's guilt, the smells and the sounds. It's changed me. all of it. It's made me stronger, yes, and more compassionate, but its also made it harder to sleep. It's made me freeze in hallways and duck into bathroom stalls to gain composure again because there was this one sound...
It changes the way you see the world, the way you see yourself and your life. It changes everything.
...
I'll tell them how I survive it. I'll tell them that on bad mornings, it feels impossible to take pleasure in anything because I'm afraid it could be taken away. That's when I make a list in my head of every act of goodness I've seen someone do. It's like a game. Repetitive. Even a little tedious. But there are much worse games to play.

The Closet (Living life well)

I sat this morning, cross legged on the floor, and listened to the story of a woman who has cancer.
Hearing her story, it felt like Vietnam and I was a vet. I knew that pain, I'd experienced the wondering when your life is going to end and if this disease is going to kill you and fighting to get better.
I'm in a different place now then I was a year ago. I'm back at school, I'm doing well, I'm stable, I have a life. And yet I'm still not better.
At school and in my now so called normal life very few people know about what I've been through. I don't talk about the medical side of things very much. Partly because I'm in a different place now than I was and partly because it's not relevant to where I am now and partly because for me it's a very personal thing. I'm doing well now but there's still that side of it that is still so raw and fresh.
I'm stable now and able to do so many things but there's not a day when I don't feel something and wonder if I'm getting sick again. There's not a day when I'm not scared that I'm going to lose everything I have right now. I'm walking the line between sick and better. I'm not sick anymore, not like I used to be, but I never will be better.
And this is my life now, finding a way to live and live fully with a chronic illness. Not letting the fear and the what if's rule my life.
Of course I'm still afraid. Of course it's still hard and overwhelming and exhausting and I break down because I don't want to live like this anymore.
I can feel the fatigue in my bones from the trying to be normal and balance my sick life and my normal life and trying to find what works best in terms of me feeling the best and how far I can push things without it getting awful.
I watched a TED talk recently by a woman who was talking about coming out of the closet. She said the closet was anything that was a hard conversation, something you kept hidden.
For me, that life I used to live, that's my closet. It's easier to not talk about it. Easier for me and probably easier for other people. It's easy to pretend that that's not who I am, that being sick isn't still this huge part of who I am. But it is. It has forever changed who I am.
So I think for me part of this new stage of life includes accepting that part of me while making room for the new part of me. I'm still that girl I was a year ago but I'm also someone new. My body is healing, my soul is healing, my heart is healing.
I had this thought that until I got the report that my conditions were cured, there would always be a part of me that was broken. I was living my life in fear of 'what if I get sick again' and I feel like I'm living this double life and it's exhausting. Until I was cured entirely, I believed that part of me was broken. Maybe I still feel like that some days.
But part of this journey is realizing that while I will never be cured, I am well. While I may never be healed, I am healing. Compared to where I was a year ago, I have made amazing progress.
That doesn't mean I'm not afraid. That doesn't mean it's not hard and I'm not exhausted. I still live my life by the clock. I still have to be very in tune with my body all the time. I'm still sick.
But I'm not broken.
I am struggling, but I am whole. I am cracking but it is only because I am growing.
I heard a quote this morning about things in life serving a purpose and then being done. And I feel like that part of my life where I was so sick, it served a purpose. And now I am moving on to this new chapter of my life. I am continually growing and changing. And just because I am shedding layers it doesn't mean I am no longer whole, it just means I am growing new skin, becoming a butterfly instead of a caterpillar.
One of the hardest things for me now has been balancing my 'two lives' and living fully with a chronic illness and not letting fear keep me in one spot. Sometimes I think it would be easier if I was back in that place where I was so sick because I knew what was coming. But that's now where I am right now.
I am here. I am healing. I am growing. I am changing. And while I'm not cured and still am sick and still struggling with that, I'm not broken. I'm not alone. And I'm trying to not fight the current and accept where I am now, surrender to the situation of where I am and not worry, not obsess over what could happen.
Sometimes I think I prefer to stay in my closet and not talk about these hard things because its easier, because it still hurts me to talk about where I was and where I'm headed when so many things are uncertain and while I'm not cured and still struggling every day. But once in a while I think it's necessary to fling open to the door to my closet and talk about where I'm at and where I'm struggling and how my healing journey is going. Because life is not isolation.
So this is my closet, the things I don't talk about. This is learning how to live again with a chronic illness, after you were convinced you were going to die. This is learning to embrace life and trying to live walking that line between sick and normal, between not cured but still well.
I think we all have closets, things we don't talk about. And maybe my closet has sparkly gold walls and maybe your closet has rainbow walls or purple walls or a disco ball, but we all have closets. And I think life wasn't meant to be lived in isolation.
I think part of healing is finding your tribe and finding those things that feed your soul and going with it. And I'm learning. And I'm struggling and I'm embracing and I'm growing and I'm healing and I'm well.

Brave

"It is not the strength of the body that counts but the strength of the spirit." J.R.R Tolkien

Hanging just above my bed, in a little emerald green bag, are 6 tiny beads. These beads are the first of my collection of bravery beads, 6 beads that represent the tests I had done on that Wednesday and all of the other procedures I've had that haven't been rewarded with a little colored bead.
I used to wonder about these beads. My friend and I were talking a while back and she commented on how she'd seen illnesses become like the Hunger Games, each person trying to out-do the other in terms of how sick they were. There's a ranking, and whether they want to admit it or not at some point almost everyone I know has compared themselves to that person over there or the one right there, figuring out where they fall in the ranking. I wondered if maybe looking at another's string of beads would be like this, another tool used to try and rank yourself and your illness.
This was until I got 6 little beads of my own. At first it was no big deal. I was excited to (finally) have some bravery beads to call my own. And then time passed and every so often I would look up at that little green bag holding my beads and smile.
The secret wasn't in the beads. It wasn't in how many beads I had compared to how many beads I've seen others have.
It was about acknowledging my own bravery.
It was about looking at those beads and knowing I earned every one of them. And it was about looking up at them when I didn't feel strong or brave and hearing the silent words "But you are."
The beads became a reminder for me that even when I don't feel brave, I am.
And I got to thinking. I think that there should be a bead for everything.
I got out of bed this morning, that was brave of me.
I stood up and dusted myself off after falling flat on my face and experiencing failure, that was pretty brave.
I made the choice to be open and honest. I remembered to take my meds. I chose to listen to my body and stay home instead of pushing it. All of those things are incredibly brave.
So why is it that so often instead of looking at those brave tasks and acknowledging them we focus on the negative? The pain endured, the task 'failed', the feeling that, even though it wasn't acted upon, was still there, the negative comment someone said or that was perceived.
I think maybe we all need some beads. To remind us of the good things, the positive things, the incredibly brave things we do.
I don't feel brave. Some days I'm struggling just to hold on. Sometimes it's not about earning a bead or a purple heart, it's just about going where you're needed and doing what needs to be done.
Looking up at my tiny green bag of beads, I smile, knowing that even when I don't feel very brave these beads prove me wrong. They remind me who I am when I forget it.
I am loved.
I am enough.
I am brave.

Stick

I've got the talking stick, what am I supposed to talk about?
The hours are slow. Most of the time I just stare at the ceiling. It hurts to even breathe.
This is the side of chronic illness that isn't so pretty. It's not butterflies and rainbows and positivity or even brutally honest jokes on pinterest laden with dark humor. This is real. This is lying in bed for hours at a time when it hurts too much to get up.
It's just a flare, I tell myself. It will get better, right? One day out being normal and I'm in so much pain it hurts to breathe, or move, or even think sometimes.

Am I supposed to talk about my feelings? I don't know... I'm good. I feel good. My feelings about being sick... I don't really have any feelings about being sick
Some days are worse than others. Some days it feels like the only noise I can make is harsh and fierce and unprecedented. I just sit there and cry. Not because I'm sad. I'm not sad. I'm just... tired.
I'm tired of living in this body that's broken down and tired of people not understanding and tired of having to defend myself.
Some days I look in the mirror and barely recognize the girl I see there. She's so pale, and her hair is matted to her head and she has no makeup on. Her eyes are kind of empty and sad. She looks fragile. She doesn't look like me.
But, then again, I don't know what I look like anymore.

I can show you. You can touch it, if you like.
See this scar here? This is from where I cut my knee open when I was learning to ride a bike.
And this one here? That's from when he broke my heart.
And this one, this one right here, that one is from the IV in my neck I had when I was a baby.
That one is from the surgery
And that one is from the monsters, the little ghouls that lurk in the dark places of my soul. You don't see them, really. You don't see their scars. But I promise you they are there. I promise you sometimes my thoughts can do more damage than the slice of a scalpel.

They told me I'd be getting sick but actually I'm just getting awesome
Considering everything I'm lucky, right?
I have an amazing support system, fabulous doctors, and the chances of me dying from my disease is pretty slim.
I have this little book I keep beside my bed, and I write down things I'm grateful for. I'm at 600 or something like that.
Want to know what the first thing I wrote in it was?
My crazy sexy chronic illness.
Because I'm grateful, I am. I'm proud of who I am and I wouldn't want to change.
Not to brag or anything, but I think being sick has made me awesome. It's who I am. Or maybe it's just showed me who I am.
I'm Alisha
I'm 16
I'm a writer, a dreamer, a daughter, sister, niece, cousin and friend
I'm a child of God
And, oh yeah, I just happen to have a couple of chronic illnesses
and I'm kind of awesome

Sure, I know that my body is trying to eat itself, but what if it isn't? What if it's changing?
I think I might be turning into glass. I think all my bones and all my muscles and all my skin are turning into glass. Hard, smooth and clean. Fragile, yeah, but strong.
I watched this movie once, about a little glass doll. She was broken, her porcelain legs shattered and the edges all jagged. The powerful wizard, he fixed her using some glue.
She turned out to be really brave. She was made of glass, yeah, but she was strong.

You'll think I'm nuts, but I've got the talking stick

http://www.freshink.com.au/stick/

Born this way

I think there's something to be said for suffering. We live in an age where we are so blessed that we can medicate when we need to; headaches, childbirth, dentistry, fevers, surgeries... But as a result, we've grown to expect less suffering in life - and in death. We even attempt to medicate heartbreak. Don't get me wrong - I've downed more than my fair share of painkillers when I've needed them - and I've dealt with the annoyance and frustration of suffering with migraines that hurt more than my natural childbirths. I've given medications or cough candies to my children... and while I understand that pain is not fun - and, yes, I do try to avoid it - or seeing my children in it, some days I wonder if we're trading off something precious when we make it our goal to avoid suffering completely.

1am had come and gone and thanks to some wonderful insomnia, I was still awake. Staring at the ceiling, journaling until my hand started cramping up and I couldn't think straight enough to finish a thought.
I was thinking about suffering.
In chronic illness, like in a lot of things, I think, there are a lot of misunderstandings. It leaves the patient (namely me, yesterday) feeling alone and frustrated. It feels like on top of actually feeling the physical pain, you have to defend it. Everyone seems to need a reason for why things are the way they are or why I'm feeling the way I am.
I'm tired of hearing everyone's opinions on how I should act or how I should treat my illness and my body. I'm tired of people in general acting like they have some sort of right to how I live my life.
And I feel like, in dealing with a chronic illness, people expect you to make yourself smaller. If you're having a flare, you have to have done something wrong. If you can't get out of bed in the morning or can't take a shower it's because you're not trying hard enough.
I think a lot of people expect patients with any kind of illness to be positive and happy all the time and that's really not true. And I feel like people are uncomfortable when they see that side that is real and honest and that really sucks sometimes.
"Stay in your little closet until you find a cure," They'll whisper, "Once you get a cure, then you can inspire people. But right now you're sick and unless you can pretend like that part of you doesn't exist then stay back."

I think, as a society, we're so quick to shrug off suffering. There's a quick fix for everything, even though it's not always that simple. One of the problems with this I see is that no one ever teaches you how to live with that pain or how to embrace who you are now.
Yeah, my life changed dramatically when I got sick. But that's not necessarily a bad thing. But I get treated like it is. I get shoved back into the corner, afraid to be myself because I'll be judged or pitied or whatever. I can't be real because that's wrong. I have to just sit there in my nice little closet and say magic words and believe I can get better and be positive all the time and then, once I get better, then I can come out.
I think more and more people are acting like suffering shouldn't be allowed. If you're sick, you take medicine and get better. If you're depressed, you take pills and make yourself happy again. As a society, I think we're uncomfortable with pain and suffering and anything that's different. There has to be something wrong with you and you have to fix it as soon as possible. And you better not inconvenience anyone with your pain. Basically sit down, shut up and smile.
I think this naturally brings me to a question of, "Do I want to be sick?" Well, obviously not. No human being in their right mind would choose agonizing pain and feeling misunderstood and being judged for something they can't control.
Do I believe I can get better? Yes. I totally believe if He wanted to, God could heal me.
Do I think it will happen in this lifetime? No, I don't. It's a possibility, but I don't believe it will happen, at least not in the way everyone expects it to.
But, here's the thing, and it's something I'm still learning too, there's nothing wrong with who I am right now. Being sick has taught me so many things and I've had so many wonderful opportunities and I'm proud of who I am. I don't ever want to make myself smaller or try to fit inside neat little boxes. This is who I am and I'm not going to stop being myself because it makes someone uncomfortable.
Being sick is a huge part of who I am. It impacts my daily life. And while, yes, it sucks, I wouldn't ever want to change it because it has made me who I am today. And I'm proud of that person.
I'm not looking for a quick fix. I'm not looking to make myself smaller and quieter and more socially acceptable. I don't want to hide those real honest parts of me and what I go through and just gloss over things and pretend everything is fine.
It's ok not to be fine. It's ok to be different. It's ok to fight and struggle and cry.
I am open to healing. I'm working every day on getting better and on feeling better. But right now, this is who I am. For the rest of my life, this will be who I am, regardless of whether or not I get a 'magic cure' or not. Every single day of my life I will fight and struggle and I'll have flares and be sick. It doesn't mean I did something wrong or that I could have prevented it. I can't live my whole life in the what if's.
I'm open to all the possibilities my future will hold. Maybe that does mean the doctors finding a cure for my diseases or maybe it means me having less flares and feeling better or maybe they won't find a cure and I'll spend the rest of my life walking this tight rope between feeling good and feeling like I got hit by a bus. And I'm ok with that.
Are you?
I'm doing this my way. I'm doing this honest and real and I'm not stifling myself to make you comfortable. I'm going to shine, either come with me or get out of my way.

Rare Disease Awareness Day

Today I'm blogging for rare disease awareness day.
It is estimated that 1 in 20 people have some kind of rare disease.
I am 1 in 20
In treating these conditions, mental health is just as important as physical health, and most people struggling with a rare condition end up feeling alone. That's why there's this day: rare disease awareness day, to join hands and take down the borders surrounding rare diseases and let people know that they aren't alone.


I was diagnosed with glycogen storage disease type 1A when I was 4 months old, and with dysautonomia when i was 15. I've gone through many, many tests, hospital stays, doctors appointments, new treatments, therapies... I know what it's like to be alone, to feel hopeless. I've watched friends fight their own battles with rare diseases, and for all of my life I've been fighting my own.
I've been sick for pretty much all my life. I don't know what it's like to be 'normal'. I don't know what it's like to look at myself and not see the G-tube or what it's like to be an average 16 year old. I know this: doctors, hospitals, needles, tests, scans, pain, isolation, surgery, feeling alone and hopeless. I know more about my conditions then most doctors, and my heart rate has been higher then that of patients on medical shows right before they get the paddles. This is my world.
But I also know this: hope, what it means to be a fighter, strength, bravery, and courage. Even in all of this, I am blessed. And because of all of this (not in spite of it) I am standing tall, stronger than ever.


Today I'm not asking for a cure, though I have faith that one will come someday. I'm not asking for a life with less struggle, less pain or less hospitals, doctors, tests...
Today I'm just asking for help in raising awareness for rare diseases like mine.
I'm asking for you to help break through the silence that surrounds rare diseases.
I'm asking so that nobody feels like they have to suffer through these conditions in isolation.
i'm asking so that no other person like me feels like they are alone
I'm asking because alone we are rare, but together we are strong.

grace

“Someone I loved once gave me a box full of darkness. It took me years to understand that this too, was a gift.” ― Mary Oliver

This week was overwhelming. I learned a lot this week, about high school things like chemistry and english, and about other things too, like love, and where my identity is, and grace.
While I got good news from my doctors earlier this week, there's something bittersweet about the whole thing. It's good and it's happy and I'm happy, but it's also scary and sad and full of so much emotion I can't even describe. I am overwhelmed by grace, because I really deserve none of this. I feel like I'm standing on something that is changing. The ground beneath me is shaking, and the world is spinning and it's hard to stay upright. Change is taking place here, something big, I can feel it. I'm excited, but it's hard too.
This week was the salty sweet kind. Days would come and I would end up crying in front of the TV or as I wrote something on my computer or as I sat in a chair after getting up in the morning. It's overwhelming and I can barely take it all in. I considered hibernation, curling up in a cave and sleeping until I figured out what to do with this beautiful mess I call life. I spend one moment falling apart and the rest of the day piecing myself back together. Slowly, piece by piece, I gather up my broken courage and muster up a timid roar. As it turns out I'm not feeling so brave or fearless these days, just sad. It's not a bad kind of sadness either, just a kind of sadness that takes time.
And so this is it. I must learn how to sit with this space in my head and in my soul. I must learn how to respond to this unending grace in the only way I know how - with unending gratitude. I must learn how to stand on my own two feet and find my courage again when everything is shifting around me and I feel so unstable in where I stand in and in who I am.
But I am keeping this list of tiny blessings, my grateful response to this amazing grace that has been showered upon me. And while the good things don't necessarily cancel out the bad, the bad too, I am learning, is a gift.

158. Dr.M
159. Eating at the Olive Garden

162. Stable


169. Heels that click when I walk

172. Overwhelming grace
173. PJ day
174. Laughter
175. Understanding
176. Hot Bubble baths
177. Accomplishment
178. Grey's Anatomy nights
179. space
180. frog socks

183. aha! moments
184. The reminder that I am enough today

186. Bowling
187. Friends
188. A day spent in town with my mama
189. discovery
190. finally catching up on some school'
191. blonde
192. love
193. Kendall's blog post
194. Friday

Stable

Sunday, February 3, 2:22pm: Voices singing along with the radio, calling out, asking for deliverance, proclaiming hope and truth as we enter the valley of the shadow of death one more time...


Monday, February 4, 10:30am; I kind of love my doctor, like a lot.

4:00pm

#retail therapy

 

 

 

Tuesday, February 5, 11:43am: The word stabilized never sounded so good

 

2:05pm: 

 

 

 

8:53pm: I am home. I am stable. Both of my doctors agreed I look good. For the first time in a long time I heard the words, "stable." I am stable. my disease is stable. i once heard this period of stability with a chronic illness as being a stabilized remission. i like that. i am in stabilized remission.

 

 

 

We tell people they are “strong” when we are uncomfortable with their pain and would prefer that they shut up and not bother us with it. To say “but you are strong” is telling someone “I don’t think you should feel that way,” and it’s not a compliment. I don’t think that strength means being invulnerable, or pretending that you are. The belief that silence and stoicism are inherently good qualities is how you end up dressed up like a bat punching criminals in an alley – it’s not a good road to emotional health.
[…]
Be sad. Be angry. Let your heart break – in the diner, on someone’s futon, in the park, on the way to the zoo, at brunch, over drinks, in the therapist’s office, on the bus – Wherever it breaks, let it break all the way open, let it run out and down and spread out in a soggy puddle at your feet. Say, “I’m sorry, I can’t listen to you today, my heart is broken. Will you sit with me a while and I’ll tell you about it?“

Say, “I can’t take care of you today, but you can take care of me, and maybe tomorrow I will take care of you, and we can trade off like that for a while, okay?”

Say, “I love you, and I love that you think I’m strong, but I don’t feel like being strong today. I feel like being angry and crazy and sad. Can we go to the movies or just sit here quietly or take a walk or talk about it or not talk about it?“

Your friends may get scared when you do this. If you, the “strong” one can break, what does that say about them? That’s why they push back at you and try to remind you of your strength, when what you need is for them to stand by you in your pain and weakness. They don’t have to solve that pain, they just have to bear witness to it. Maybe they don’t know how – a lot of people don’t know what to do in the face of other people’s pain. They want to fix everything, and if they can’t fix it they feel inadequate. As the “strong” one you can help them out with this by saying “You don’t have to fix it. You don’t have to do anything. Just be with me, and listen, and love me, and I’ll love you back. That’s all I need – to know that you love me, even when I’m sad and scared and don’t know what to do next.”

Soul Food

For months my life was in shambles. I felt like a caged animal, filled with so much emotion I didn't know how to express. I was filled with ancient, primal sounds coming from some place deep within me. I felt trapped, lost, angry and desperate.
I had just been diagnosed. and instead of being happy and relieved (though I was those things too) I was upset. It was another thing I didn't know how to handle. It was the loss of something so precious. It was evidence of where I'd failed. I felt like i was participating in a horror show. I didn't understand. I felt seering loss, a sense of complete brokenness.

It was January 1 when things began to change for me. The first day of a new year usually means making resolutions i know i'll never keep, being sentimental about the year gone by yet excited for a clean slate in the new year. This year is turning out to be different. I feel better then I have in a very long time. I'm finding my 'muchness' again. I'm coming out of the darkness and walking towards the light. I'm happy, and I'm excited for my future.
Not long into January, I discovered a fabulous lady called Kris Carr. She had stablized her chronic stage 4 cancer and her lifestyle was intriguing to someone like me, someone living in desperation with the knowledge that something had to change or I might not make it through this and be ok.
So I started juicing, and eating more veggies, and working to diminish inflammation in my body. And it started working. I started feeling better, my energy improved, the amount of pain I was having lessened, and I just felt better, happy, like I was glowing.

Today was the first time i had an ionic footbath. I was a little nervous, but mostly excited as I stepped into that small room. I submerged my feet into the tub of warm water, and almost instantly toxins began to come out of the pores in my feet and into the water.
I listened to the sounds of the people and things around me. I felt the warm water on my feet, felt it as more warm water was poured in to the bath, as a cup of electrolyte water was placed in front of me. This was the sound of care, the feeling of someone watching over me.
I rolled up the pant legs of my jeans, watching as toxins were released from my body. Toxins released from every part of me.
We made conversation as I soaked my feet, the water changing from golden amber to mud brown with bubbles.
"Drink plenty of water in the next 24 hours," they reminded me.
Care was being given.

This was my first time recieving an ionic footbath. Yesterday, as I walked through the aisles of the health food store, I saw a poster. Holistic health is something i find intriguing, and so when I saw the sign I was ready to give it a try. Emotionally speaking, when I discovered holistic health and this kind of medicine that wasn't just about symptoms, I was crawling on my hands and knees. I was exhausted from trying to reign in my emotions, faituged from fighting an uphill battle with grief. Natural medicine, for me, wasn't about possibly improving my symptoms and feeling better. It was about pure survival. It was knowing that if I didn't do something I was going to get smaller and smaller until I was barely a speck in a microscope.
On December 31, it was the worst day and the best day. It was the day I knew I couldn't fight anymore. I was desperate. I was tired of fighting, tired of pretending to be ok, tired of living in this place of constant grief. Was it my own fault that I was feeling like this? Was I not thankful enough? Maybe, like some people seemed to think, if I was just happier I wouldn't be feeling like I just lost one of the most precious things in my world, like death had just come and settled in to my body.
I say it was also my best day because after curling up on the couch and watching a movie and crying and wondering what i was going to do now, I watched the sunset out of the big window in our family room. It was the most beautiful sunset, with colors of pink and golden and purple and wisps of blue. It was the day I began googling and accidentally stumbled upon an article about some celebrity who had tried a natural diet. I was intrigued, and read more, and more.
So I decided to try. Things couldn't get any worse, and I had nothing to lose. So in a matter of days I began juicing, and eating more veggies, then slowly cutting back on my animal products. The holistic approach to my health wasn't just about my physical symptoms, though. I began feeling lighter, feeling better, which gave me the energy to finally sift through all those emotions inside of me I'd kept buried for so long. Finally i had a license to feel all of these things.
So, 3 times a day, I have felt there, standing over my juicer as veggies spun out of control, over the stove as ingredients mixed together, most of the time to create something that would nourish my body and also, in turn, my soul. As I scour the internet, looking up new holistic health plans, I let myself dream of a new future for myself.
When I say this new life style helped me, I'm not just saying it improved my disease related symptoms (though it did.)  I was in a coma and I got diagnosed and that's traumatic and awful and it's not ok for me. Nothing can make being sick not suck for me - not even the love of my amazing friends or talking with other chronic illness survivors or writing or hot bubble baths, though these things are all crucial in my healing journey. Nothing will ever make what I've gone through ok or not traumatic or not suck. but holistic health does something for me. It's something I can control. It gives me the ability to deal with my emotions, or to lose myself and not think while I cook or find new delicious recipes or remedies.
For so long I've worked so hard to take care of everyone else. But this is me taking care of me. it's feeding not only my body but my soul. it gives me control in a life where things are always needed from me.

I had my first ionic footbath today, and it was a release. as toxins poured out of my feet, something inside of me released. Care was being provided. While my life still spins chaotically and things are still needed from me always, natural medicine gives me stability. It's restored my faith in myself.
Today, as I rinsed off my feet, wiping all the brown sludge from my ankles, the lady who was doing my footbath said to me, "I don't say this to a lot of people but I have a feeling you're going to change the world."
I smile at the thought. Maybe I am. But right now I am changing my world. And, for now, that is more than enough.

If I could...

If I could, I would go back in time. I would endure the sickness, the worry, the desperation. I would go through all the scans, the needles, the doctors visits, the tests. I would be given hope, then false hope, then no hope at all.
I would struggle through hospital stays, and days when I didn't want to get out of bed. I would do it all again just so I could live in this moment.
If I could go back in time, I would start at the beginning and marvel at every little thing, everything that caused me pain and agony, and all those amazingly good times too.
I would drink up every moment that I was alive, breathing, hopeful.
I would record every single happy moment, and even some of the not so happy ones. I would take pictures of the journey. I would be brave.
I would find the courage to speak, find the courage to share my truth. I would laugh more, cry less, and celebrate every moment I am living. I would make art, and share it. I would be honest and real. I wouldn't worry about the small things. I would be around people who inspire me and stop trying so hard to make people happy while risking my own happiness.
If I could, I would go back to where I stood, 12 years old, facing a mountain. I would take her hand and tell her to worry less and laugh more, to be alive in every moment, to never stop dreaming, to love with her heart wide open and to believe in herself above all else.
I don't know if I would have believed myself then, but I know now, and I guess it's never too late to start.
And so, I sit here thinking about all the things I would have done differently, but the thing is I would go through all of those heart breaking moments again if it meant I would end up here, surrounded by friends who make me deleriously happy, inspired, feeling happy and grateful, feeling like a survivor.
I would go through all of that again if it meant i would end up here.
Countless times, life chose me. I should have died, but I didn't. And so, I will choose life.

Numbers and Stories

The story doesn't end here

It's been 128 days since I got diagnosed. I thought of just saying how long it's been in months (4 months and 6 days) or guessing (just over 4 months) but I've decided I've earned every single one of those 128 days. I'm still 128 days later, and sitting there on September 11, 2012, I didn't know if I would be. I couldn't imagine myself 128 days out, or even 18 days out.
Life stopped for a while, for me. It stopped and now that it's slowly beginning to start again I'm left to look around and wonder what happened during those days. If I'm being honest, I'm looking over the past 1513 days (November 25, 2008) and wondering what happened.
Last night I kept asking myself the question, "What are you scared of?" over and over again. I came up with some pretty interesting things, but one of the things that struck me was this, "I'm scared I haven't made any good choices since November 23, 2008. I'm scared I did it all wrong and I ruined everything."
I keep track of days. Days since the diagnosis, days since the coma, days until finals, until the new semester begins, until break, until the weekend, until doctors appointments. I keep track of numbers: my locker combination, numbers that fit seamlessly into physics equations, the number of books I'll be reading for english next semester, the numbers on the clock that tell me how much time i have left before i have to get up or make an effort at doing some school or walk to class or babysit.
128 days. 1513 days. and I've earned every single one of them.
I never imagined it making it here, to 128 days - and 1513 days - out. If you'd ask me in September if i ever would have made it here I wouldn't know. I couldn't imagine myself here, couldn't imagine making it this far. If you would have told me after I woke up from the coma that I would be here now, that I would have fought like crazy to get diagnosed and then that that diagnosis would have almost broke me, I wouldn't have believed you.
The days fall together in a blur, and I wonder about everything I did during those 1513 days.
But the story doesn't end here. The story doesn't end at 1513 days or 128 days.
Everything is lying blank before me, and just because one chapter is closing doesn't mean the story is finished. The story doesn't end here. There will be new choices - better ones, hopefully - and new chances at love and relationships. There will be good days, and bad days, days that I walk through with ease and days that I fight through every single moment. And each day I will have earned another number, another day that I'm still here, still living, still writing the story that is my life. Because my story doesn't end here, and neither do the days of being a survivor.
It's been 1513 days, and 128 days, and I'm still here. I'm still fighting, and I have earned every single one of those days. And the story doesn't end here. Because there are still so many days waiting to be filled with heartbreaking things and wonderful things that I can't even imagine yet.
The story doesn't end here. With each day that passes I am walking farther away from the battlefield I lived in for so long, and walking towards the sunrise, with the promise of a new adventure lurking on the horizon.

Running the Gauntlet

I thought I knew what I was going to write. For days now I thought I knew what I was going to write. Turns out I have no clue. I haven't been writing much, besides my daily 750 words.
I write about zombie's and a pink dress and onions.
Today I wrote about Africa and plastic surgery and Kate.

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I'm still here, muddling along. I've had a decent Christmas vacation. Some weeks were worse then others. Last week was pretty bad, this week is pretty decent. I guess that's how it works.
I watched Les Mis over break, and started - and finished - The Perks of Being a Wallflower. I drank tea and baked some muffins and took pictures and drank tea and watched Grey's Anatomy.

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On Thursday it will have been 4 months since I got diagnosed. Is that crazy? Is that only crazy to me? It feels like not that long ago. It feels like it wasn't that long ago that it was November 2008 and I just woke up from a coma.
I feel like I should be able to deal with this better. I should be happy and grateful and living life. And I am happy and grateful and living life. But I'm also sad and scared and grieving. I never expected to be sad and scared and grieving. I was supposed to have this all figured out. I'm supposed to know what's going on. But I don't.
It's not what I thought it would be. Getting diagnosed wasn't just getting answers. It was death and birth all rolled into one. It was being forced to stop running and try to come to terms with everything I've been hiding from since November 2008. It's whispering into the dark, "Hey, something happened to me and it was awful and tragic and it's not ok," Even though during the day I find myself constantly saying, "I'm ok."
Getting diagnosed wasn't just life, a birth, it was death too. And I'm still learning how to grieve that.
I'm getting there, though. I'm trying.

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On good days I can see peace, a clearing, hope. I would go through all this pain all over again for the honor of bearing witness to these chronic illnesses that have changed my life so much, my horror and my wonder combined.