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."