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.
Showing posts with label sick. Show all posts
Showing posts with label sick. Show all posts
Monday, January 25, 2016
Friday, January 22, 2016
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.
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.
Tuesday, January 19, 2016
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 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."
Monday, January 11, 2016
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."
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."
Wednesday, December 16, 2015
Joy with teeth
It's taken me this long to sit down to write a piece about joy, and I still don't have the words to say.
I don't have it in me to write about the soft platitudes of joy, the sun rising behind the clouds, the nights that turn into morning.
There are days, like now, when the pain of life feels so thick I can barely move through it.
Death crowds in close. Pain is my constant companion, and instability keeps me up all night. I am functioning in a sort of daze, never quite having a good grip on reality.
I have become unwelcome friends with anxiety, with the fear that grips the heart, the slow moving hour hand of the clock, with tears that seem to permanently stain my cheeks.
I am hunched over like the old and sick, grasping for oxygen, still trying to curl my fingers around hope and peace, the parts of advent I can relate to.
My heart is cloaked in too much heavy sorrow to understand joy. And I realize that in a time like this, I don't need the gentle, bubbly character of joy like the one who lights up the TV screen. I need joy with teeth.
I need joy with grit, with fire, with fierce determination.
I am grasping for the strings of joy that are found in the little things: in hugs and the frost glistening in the sunlight on the trees and inside jokes and the reminders that I'm not alone.
Joy is stubborn, hanging in there despite every reason to fade into nothing, being found in the most unlikely of places if only I look for it.
It is in the ugly beautiful, the breaking open, the rawness of this season.
Joy doesn't feel like it used to. Joy is rough around the edges, gasping as it is birthed into this world. It is this bloody mess, this screaming thing, and yet it is there, and it begs to be noticed in the tiny details.
Joy is here, here too. Joy with ferocity and grit and teeth and fire. I'd rather the simple Hallmark greeting card joy over this kind that is laced with so much pain and darkness.
And yet, when I close my eyes and imagine a world living in such a thick fog, where Jesus penetrated the veil and entered into brokenness, I imagine a joy similar to that.
Of breath finally releasing and gasping for air as this messy, uncontrollable thing slides out onto the ground. A broken hallelujah, a heaving sigh of "We made it."
We made it here, to this.
And in the middle of the broken, there is beautiful.
I don't have it in me to write about the soft platitudes of joy, the sun rising behind the clouds, the nights that turn into morning.
There are days, like now, when the pain of life feels so thick I can barely move through it.
Death crowds in close. Pain is my constant companion, and instability keeps me up all night. I am functioning in a sort of daze, never quite having a good grip on reality.
I have become unwelcome friends with anxiety, with the fear that grips the heart, the slow moving hour hand of the clock, with tears that seem to permanently stain my cheeks.
I am hunched over like the old and sick, grasping for oxygen, still trying to curl my fingers around hope and peace, the parts of advent I can relate to.
My heart is cloaked in too much heavy sorrow to understand joy. And I realize that in a time like this, I don't need the gentle, bubbly character of joy like the one who lights up the TV screen. I need joy with teeth.
I need joy with grit, with fire, with fierce determination.
I am grasping for the strings of joy that are found in the little things: in hugs and the frost glistening in the sunlight on the trees and inside jokes and the reminders that I'm not alone.
Joy is stubborn, hanging in there despite every reason to fade into nothing, being found in the most unlikely of places if only I look for it.
It is in the ugly beautiful, the breaking open, the rawness of this season.
Joy doesn't feel like it used to. Joy is rough around the edges, gasping as it is birthed into this world. It is this bloody mess, this screaming thing, and yet it is there, and it begs to be noticed in the tiny details.
Joy is here, here too. Joy with ferocity and grit and teeth and fire. I'd rather the simple Hallmark greeting card joy over this kind that is laced with so much pain and darkness.
And yet, when I close my eyes and imagine a world living in such a thick fog, where Jesus penetrated the veil and entered into brokenness, I imagine a joy similar to that.
Of breath finally releasing and gasping for air as this messy, uncontrollable thing slides out onto the ground. A broken hallelujah, a heaving sigh of "We made it."
We made it here, to this.
And in the middle of the broken, there is beautiful.
Monday, December 7, 2015
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.
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.
Friday, December 4, 2015
The Weary World Rejoices (Friday night thoughts)
Friday nights seem slower in this past season. The week pulls and tugs at me, coming apart the tiny seams I spent so long stitching, and by the time Friday night rolls around all I want is a bed, a few free hours to clear my head.
I fill my time with countless episodes of Scandal, loads of laundry. I feel everything deeply and intensely and in these moments, I tend to bury within myself and hide away from a world that is constantly demanding of my time and attention.
There are only a few weeks left in the semester, and while I'm almost in shock at how quickly this year has gone by, I am readily anticipating the break.
Something about the Christmas season always fills me with a sort of childlike joy. But something about the advent season pulls at me with a sense of longing, of waiting through the darkest days for the light that I know is coming. And I'm in the middle of that phase, where I am feeling my heart turn itself open. And I know, I know, the joy that is coming, but in this moment all I feel is the clenched tightness of these dark, waiting days. That's advent, isn't it?
I celebrated my 19th birthday a week ago, and to be honest it doesn't feel like much has changed. When I was younger I would be in knots over my birthday, filled with excitement over being another year older and more mature and closer to the adulthood I so desired. But in the last few years, with each turn of the calendar, I haven't felt the momentous becoming of another age. I celebrated in a way that my heart has been yearning to celebrate: with my favourite movie and dinner with the family and game night with friends. I looked around at my life, in all its missteps and mistakes and floundering, with some sense of bewildered amazement that I still ended up here. Despite the big shift from freshman to sophomore year of college, entering into this new world with added responsibilities where I am daily butting heads with my perfectionism, despite feeling sick in the deepest part of me where I wonder if I will ever fully recover and experience health again, and being painfully honest about my life up until this point and learning to accept my decisions, I have found beautiful people that support me, love me and encourage me. I am still (by nothing short of a miracle) able to experience every day the wild beauty of love. And even though I'm a grown up now, I'm still very much a daughter, and a sister, a granddaughter and a niece and (as of recently) auntie to my cousins' beautiful children. I have found volunteer work that fills my heart, even on its worst days, and even in the messy, frustrating trials I am learning more about who I am, and who I want to be.
I guess all this is to say that my life is changing, in ways I never expected. I am continuing a process I started early this year, and am furthering my metamorphoses and becoming a butterfly.
Friday nights roll around and my heart is full from the heaviness of the week of which it carried. I ache for the still quiet, for the celebration in the midst of a heavy season.
This semester, this year, this season, has brought me to my knees time and time again. It is full of the bittersweet. Sometimes it is both in the same second and I am unsure of how to handle it, how to hold these two emotions at the same time. There is the weary exhaustion of a Friday night, limping to the finish line of another week with barely enough time to catch my breath before we go again, and yet I look out my window on this unusually warm December night and see the glow of the street lights, and hear the laughter echoing from down the hall.
There is brokenness but there is wholeness. There is darkness but everything in me is waiting for the light. There is the turning another year older, the finishing of a semester, silence in a dorm room where it seems like everything might be falling apart but maybe its really just falling together.
We hold our breath in anticipation.
And once again, the weary world rejoices.
I fill my time with countless episodes of Scandal, loads of laundry. I feel everything deeply and intensely and in these moments, I tend to bury within myself and hide away from a world that is constantly demanding of my time and attention.
There are only a few weeks left in the semester, and while I'm almost in shock at how quickly this year has gone by, I am readily anticipating the break.
Something about the Christmas season always fills me with a sort of childlike joy. But something about the advent season pulls at me with a sense of longing, of waiting through the darkest days for the light that I know is coming. And I'm in the middle of that phase, where I am feeling my heart turn itself open. And I know, I know, the joy that is coming, but in this moment all I feel is the clenched tightness of these dark, waiting days. That's advent, isn't it?
I celebrated my 19th birthday a week ago, and to be honest it doesn't feel like much has changed. When I was younger I would be in knots over my birthday, filled with excitement over being another year older and more mature and closer to the adulthood I so desired. But in the last few years, with each turn of the calendar, I haven't felt the momentous becoming of another age. I celebrated in a way that my heart has been yearning to celebrate: with my favourite movie and dinner with the family and game night with friends. I looked around at my life, in all its missteps and mistakes and floundering, with some sense of bewildered amazement that I still ended up here. Despite the big shift from freshman to sophomore year of college, entering into this new world with added responsibilities where I am daily butting heads with my perfectionism, despite feeling sick in the deepest part of me where I wonder if I will ever fully recover and experience health again, and being painfully honest about my life up until this point and learning to accept my decisions, I have found beautiful people that support me, love me and encourage me. I am still (by nothing short of a miracle) able to experience every day the wild beauty of love. And even though I'm a grown up now, I'm still very much a daughter, and a sister, a granddaughter and a niece and (as of recently) auntie to my cousins' beautiful children. I have found volunteer work that fills my heart, even on its worst days, and even in the messy, frustrating trials I am learning more about who I am, and who I want to be.
I guess all this is to say that my life is changing, in ways I never expected. I am continuing a process I started early this year, and am furthering my metamorphoses and becoming a butterfly.
Friday nights roll around and my heart is full from the heaviness of the week of which it carried. I ache for the still quiet, for the celebration in the midst of a heavy season.
This semester, this year, this season, has brought me to my knees time and time again. It is full of the bittersweet. Sometimes it is both in the same second and I am unsure of how to handle it, how to hold these two emotions at the same time. There is the weary exhaustion of a Friday night, limping to the finish line of another week with barely enough time to catch my breath before we go again, and yet I look out my window on this unusually warm December night and see the glow of the street lights, and hear the laughter echoing from down the hall.
There is brokenness but there is wholeness. There is darkness but everything in me is waiting for the light. There is the turning another year older, the finishing of a semester, silence in a dorm room where it seems like everything might be falling apart but maybe its really just falling together.
We hold our breath in anticipation.
And once again, the weary world rejoices.
Sunday, April 27, 2014
#ihopeblaisecallsme
My friend Jen is a firecracker. She has taught me a lot about a lot of things, proclaiming she swears too much. She writes these incredibly honest essays that make me reflect back on my own life, and want to be more honest. She has a way of making me unafraid.
I've never met Jen, but if you asked me for a list of the most influential people in my life, she would definitely be on there. And on my bucket list is to go practice yoga with Jen.
Jen's nephew Blaise has Prader Willi Syndrome and Autism. Blaise has taken to calling people. And while he doesn't mean anything bad by these calls, there have been people who have gotten upset.
Jen's sister started something that can only be described as a movement called I hope Blaise calls me. It's a group of people showing their support for Blaise, but also people who want to spread the message of acceptance.
I've spoken out about my feelings before on the idea of acceptance. I've gotten loud and proud about my own health situation.
I'm learning my voice can make a difference.
So right now I'm speaking out about something I believe in.
I believe in the message of acceptance, and I believe in making a difference.
I believe that when people come together, great things can happen.
If you want to get involved with the #ihopeblaisecallsme movement, check out their facebook page
I've never met Jen, but if you asked me for a list of the most influential people in my life, she would definitely be on there. And on my bucket list is to go practice yoga with Jen.
Jen's nephew Blaise has Prader Willi Syndrome and Autism. Blaise has taken to calling people. And while he doesn't mean anything bad by these calls, there have been people who have gotten upset.
Jen's sister started something that can only be described as a movement called I hope Blaise calls me. It's a group of people showing their support for Blaise, but also people who want to spread the message of acceptance.
I've spoken out about my feelings before on the idea of acceptance. I've gotten loud and proud about my own health situation.
I'm learning my voice can make a difference.
So right now I'm speaking out about something I believe in.
I believe in the message of acceptance, and I believe in making a difference.
I believe that when people come together, great things can happen.
If you want to get involved with the #ihopeblaisecallsme movement, check out their facebook page
Sunday, March 2, 2014
"Soon this place will be too small"
From Still Point of the Turning World by Emily Rapp
For as many times as I've done it, you would think that letting go is something that comes easy to me. And yet I still find myself fighting against it, my heart suffering from whiplash and weathered by the elements.
There is something they don't tell you about the moment when you alter your position to the universe.
My hands and feet are cold, I am filled with reckless ambition, I have avoided mirrors and sharp corners and acidic foods simply because this is what you do when you have been stripped down to a new layer of skin.
Sometimes I think it would be easier if I could plot my relation to the universe with a simple formula, putting things into neat little boxes.
I am angry because...
I am sad because...
But sometimes there is no explanation, only still silence. It is in that silence I can hear my own heartbeat like a machine gun as it slams into my chest wall.
Don't write if you don't feel up to it, people cautioned me when I told them I had started to write {about Ronan}. But it didn't matter if I felt up to it. It was my responsibility; it was my job. It ordered chaos, focused energy, provided a way of "bearing up" that no period of restfulness could possibly accomplish. In other words, rendering loss was a way of honoring life
I have spent months writing about grief, running it over in my hands, preserving it in every way that I can. I have spent days chasing after life, wondering what exactly constitutes life, and love, and always altering my position to both.
I have said the words I love you many times, and most of them meant Please don't leave me here alone
I write in my own blood, until my heart is exposed on the page. Sometimes I wonder if this also constitutes as art. I wonder if there is something beautiful in being so exposed and fragile.
I have been digging through my own ashes, pulling the gore from my chest with my bare hands, staring at myself and realizing that my horror and my wonder are colliding in this very moment in a place under my skin, that I am both.
After a second suicide attempt, Mary awakens on the bank of the Thames, having just been rescued from the water. This event marks a kind of rebirth for her, an awakening.
'We must go on living' Mary concluded, 'It is our duty'
And so, in the darkness, I am working to build a life for myself. I am capturing moments of beauty, storing them, treasuring them. I often feel like I am laboring long hours, and in the end I can only hope the outcome has been worth the heartache.
There is great heartache that comes with letting yourself be loved, I have decided. I am continually altering my place in the universe, constantly shifting, expanding and shrinking, pulling in and releasing with open hands.
There is nothing left inside of me to offer right now. My hands are empty, my body turning in on itself, my eyes always looking for glimmers of hope.
Somehow, as hard as I have tried to hold onto the past, this feels like starting over.
As much as I have made myself believe I must hold onto the pain and grief, never forget the extremes it has taken to become this person, right now it feels like I am awakening into spring, a new beginning.
There comes a time when you must taste hope for what is really is, and open your heart once more to the potential.
I have held things (people, pain, stories, grief, moments) close to my heart claiming that I would never let go of these that have impacted me so greatly
But sometimes it is time to let go
And you must stand in the wind with your arms raised to the heavens and trust that this is how it is, how it is supposed to be
I stared at him and tickled him and kissed him and wished that my words, anything, could save him. But no, writing would not save Ronan. But, I thought, it might save me
Wednesday, February 5, 2014
Deterioration Transfused
A poem
You’re killing me.
I mumble the words as I sit in the front seat of my car listening to some country station
You’re killing me
Like the poison they are feeding you through lines and tubes is flowing into my veins, creating a lethal combination brewing in my blood stream
Loving you and missing you feels like it will be the death of me
My heart beats too fast (every beat a resounding “Don’t die, don’t die”), my palms are sweaty, my muscles ache, I barely sleep.
You, my love, will be the death of me.
Its not fair.
I want you here, to hold you and promise you a thousand tomorrows. And when time screws us over, as time has been known to do, we’ll still be running like we are invincible and death is just a detour.
There are no answers. All I can give you are empty words and promises. There is nothing romantic nor elegant about deterioration.
It happens in twins. One deteriorates followed by the other. Its a crisis, an emergency.
So why, now, are there no alarms sounding?
I’d do anything to turn back time, to change things. But I am not god nor magician, only a simple poet with her heart on her sleeve.
Your deterioration is killing me.
You’re killing me.
I mumble the words as I sit in the front seat of my car listening to some country station
You’re killing me
Like the poison they are feeding you through lines and tubes is flowing into my veins, creating a lethal combination brewing in my blood stream
Loving you and missing you feels like it will be the death of me
My heart beats too fast (every beat a resounding “Don’t die, don’t die”), my palms are sweaty, my muscles ache, I barely sleep.
You, my love, will be the death of me.
Its not fair.
I want you here, to hold you and promise you a thousand tomorrows. And when time screws us over, as time has been known to do, we’ll still be running like we are invincible and death is just a detour.
There are no answers. All I can give you are empty words and promises. There is nothing romantic nor elegant about deterioration.
It happens in twins. One deteriorates followed by the other. Its a crisis, an emergency.
So why, now, are there no alarms sounding?
I’d do anything to turn back time, to change things. But I am not god nor magician, only a simple poet with her heart on her sleeve.
Your deterioration is killing me.
Monday, December 30, 2013
2013 Reflections
On New Year's Eve of 2012, I received an email from a friend. I was feeling unsocial, uncomfortable in my own skin, and anxious. Her message ended up becoming a mantra of sorts for my year: Wishing you Poetry and Stars.
And, looking back on the year I had in 2013, it was filled with poetry and stars, just not in the way I expected.
One thing I tried to do in 2013 was to write. And I did, almost daily. I kept a running tab, wrote entries filled with whatever I was thinking about that day. Some months I wrote every day, and other months I wrote only a few times per week. But looking back on those entries, on the music I listened to in 2013, on the mementos I kept pinned to my wall and on shelves in containers, I get to see how far I've come in the last year, how I've changed, how I've grown.
This is my sentimental reflection on 2013, a goodbye echoing out as I ready myself for a new hello.
January
January began with hope, the desire to be better. It began with metaphors and stories and wishful thinking, the way January usually begins. I thought a lot about redemption, about the meaning of home, and struggled with finding peace within myself.
January was a month filled with hope and the promise of new beginnings. I was blissfully happy, learning to find myself in the world.
February
February began with thoughts of love and the transformation into a lion hearted girl. I was still wistful, happy in a way I couldn't quite understand. By the final day in February, my world began to crack. I didn't know then it was in preparation for the break that would upend my life.
March
March was grief, and brokenness. It was falling to the floor screaming and standing beside a grave with no explanation, only anguish. It was everything I didn't know how to understand, and everything I never wanted to have to learn. It was discovering the meaning of strength, daily. It was a time when my heart was broken, shattered into a million pieces I didn't know how to fix.
April
Looking back, I barely remember April. The days seem to run together, one moment fading into the next, none of them feeling real. I was still broken. I craved darkness, silence, solitude. I was restless, and angry. I tried to write through my pain, most of the words leaving my body bereft, inconsolable, and fierce. I watched too much television in an attempt to ignore the world that miraculously kept turning in despite of my brokenness.
May
May felt like another round of bad luck, like the blackness had swallowed me whole. The wound I had been trying to heal in April felt split open again, and I was bleeding all over the floor. I cried more in the first part of May then I remember doing before: in a parking lot, on the kitchen floor, in a doctor's office where suddenly the roles were reversed, and too often, in my own bed, crying myself to sleep. I held onto hope like if I curled my fingers around it tight enough, then it couldn't be broken. I went inward, taking stock of my life, bracing myself for the pieces of my world that kept falling in.
June
June was for rituals, for clinging to ceremonies. I was desperately searching for a way to be full again. I did a lot of yoga, ate well, and searched for people who were bravely walking through brokenness. Words weren't as easy to come by, and if I sat in the silence for too long I started to feel the voices in my head begin to take over. I chased sanity as if it was something I could grab, locking my fingers around it and holding it tight.
July
The discomfort I felt inside my own body grew heavier. I slept in hotel rooms and thought about death, and life, and living. My body felt broken, my mind felt broken, my heart felt broken. As many strings as I pulled, hoping to hold my life together, it kept unraveling. I felt like a stranger in my own skin. I had a restless mind and a restless heart, and I didn't know how to sit with myself and not run away from the pain, in some way or another.
August
August was for lusting after life, trying to swallow it whole. I tried stupid things and not so stupid things and did what made me happy. Maybe it was covering some deeper issue I still had, maybe it was well done denial, but I felt alive for the first time in months. I felt like the world was begging to be noticed and I vowed to take advantage of every moment.
September
September welcomed new things. It began with a desire to be brave, to experience life, and ended in quiet reflection. I was introduced to a world that challenged me, intrigued me and mystified me (and still does.) It was my first introduction to some amazing people. I wrestled with myself, asking a lot of questions, some that didn't have answers.
October
The broken heart was analyzed as more losses fell, reminding me of the grief that had draped itself over my life. It was death, and letting go. It was also welcoming new life, stretching to make room to accommodate it all. It was driving down back roads and listening to loud music and falling in and out of love daily.
November
November was for fiction, for distractions. It was poetry in dark closets and too many hours spent staring at the wall. It was the month when I turned another year older, which was both exciting and something I dreaded in the same moment. I was stuck in my head too much, as I always am. The world felt like it was moving too fast for me to keep up. I felt helpless to stop the spinning of my own mind. It was also a month of gathering stories, memorizing faces, collecting moments.
December
December was the apology I never knew how to write. It was days upon days lived in a perpetual state of fear, of panic, of grief. It was losing my mind slowly. I didn't try to understand it all. I went through the motions. I didn't write, didn't let my mind run away with the endless possibilities that were churning inside of my skull. I didn't let the brokenness of the month, and of all the months that have come before it, catch up with me.
2013 was a year of firsts, a year of being completely broken open. As a whole it was probably filled with more tears than any other year, more grief, more moments I didn't know how to comprehend. I told my secrets to the stars and wrote poetry on the side of coffee cups and crawled my way up out of the grief.
I'm coming out of 2013 not at all the same person who walked into it. I've been forever changed by the things that happened this year. I questioned my whole life, and am on a quest for answers. I cried, screamed, felt and wrote my way through this year. Because sometimes that's the only way you can do it.
I carry more anger now, am more jaded, more scarred. The world doesn't make sense to me anymore, not in the way it used to.
But, despite all the grief I carry with me from this past year, it was also full of good things. I felt the world inside of myself, and started (As I always am) making peace with it. While I lost people, I also met some amazing people, people who make me laugh and fill me with hope and encourage me to be a better person, to "write with blood" and to experience life. I had moments when I felt truly alive. I fell in love with people, with things, with the world despite it's brokenness.
"You'll need coffee shops and sunsets and road trips. Airplanes and passports and new songs and old songs, but people more than anything else. You will need other people and you will need to be that other person to someone else, a living, breathing, screaming invitation to believe in better things"
"Sometimes its the smallest things that save us: the weather growing cold, a child's smile, and a cup of excellent coffee."
And, looking back on the year I had in 2013, it was filled with poetry and stars, just not in the way I expected.
One thing I tried to do in 2013 was to write. And I did, almost daily. I kept a running tab, wrote entries filled with whatever I was thinking about that day. Some months I wrote every day, and other months I wrote only a few times per week. But looking back on those entries, on the music I listened to in 2013, on the mementos I kept pinned to my wall and on shelves in containers, I get to see how far I've come in the last year, how I've changed, how I've grown.
This is my sentimental reflection on 2013, a goodbye echoing out as I ready myself for a new hello.
January
January began with hope, the desire to be better. It began with metaphors and stories and wishful thinking, the way January usually begins. I thought a lot about redemption, about the meaning of home, and struggled with finding peace within myself.
January was a month filled with hope and the promise of new beginnings. I was blissfully happy, learning to find myself in the world.
February
February began with thoughts of love and the transformation into a lion hearted girl. I was still wistful, happy in a way I couldn't quite understand. By the final day in February, my world began to crack. I didn't know then it was in preparation for the break that would upend my life.
March
March was grief, and brokenness. It was falling to the floor screaming and standing beside a grave with no explanation, only anguish. It was everything I didn't know how to understand, and everything I never wanted to have to learn. It was discovering the meaning of strength, daily. It was a time when my heart was broken, shattered into a million pieces I didn't know how to fix.
April
Looking back, I barely remember April. The days seem to run together, one moment fading into the next, none of them feeling real. I was still broken. I craved darkness, silence, solitude. I was restless, and angry. I tried to write through my pain, most of the words leaving my body bereft, inconsolable, and fierce. I watched too much television in an attempt to ignore the world that miraculously kept turning in despite of my brokenness.
May
May felt like another round of bad luck, like the blackness had swallowed me whole. The wound I had been trying to heal in April felt split open again, and I was bleeding all over the floor. I cried more in the first part of May then I remember doing before: in a parking lot, on the kitchen floor, in a doctor's office where suddenly the roles were reversed, and too often, in my own bed, crying myself to sleep. I held onto hope like if I curled my fingers around it tight enough, then it couldn't be broken. I went inward, taking stock of my life, bracing myself for the pieces of my world that kept falling in.
June
June was for rituals, for clinging to ceremonies. I was desperately searching for a way to be full again. I did a lot of yoga, ate well, and searched for people who were bravely walking through brokenness. Words weren't as easy to come by, and if I sat in the silence for too long I started to feel the voices in my head begin to take over. I chased sanity as if it was something I could grab, locking my fingers around it and holding it tight.
July
The discomfort I felt inside my own body grew heavier. I slept in hotel rooms and thought about death, and life, and living. My body felt broken, my mind felt broken, my heart felt broken. As many strings as I pulled, hoping to hold my life together, it kept unraveling. I felt like a stranger in my own skin. I had a restless mind and a restless heart, and I didn't know how to sit with myself and not run away from the pain, in some way or another.
August
August was for lusting after life, trying to swallow it whole. I tried stupid things and not so stupid things and did what made me happy. Maybe it was covering some deeper issue I still had, maybe it was well done denial, but I felt alive for the first time in months. I felt like the world was begging to be noticed and I vowed to take advantage of every moment.
September
September welcomed new things. It began with a desire to be brave, to experience life, and ended in quiet reflection. I was introduced to a world that challenged me, intrigued me and mystified me (and still does.) It was my first introduction to some amazing people. I wrestled with myself, asking a lot of questions, some that didn't have answers.
October
The broken heart was analyzed as more losses fell, reminding me of the grief that had draped itself over my life. It was death, and letting go. It was also welcoming new life, stretching to make room to accommodate it all. It was driving down back roads and listening to loud music and falling in and out of love daily.
November
November was for fiction, for distractions. It was poetry in dark closets and too many hours spent staring at the wall. It was the month when I turned another year older, which was both exciting and something I dreaded in the same moment. I was stuck in my head too much, as I always am. The world felt like it was moving too fast for me to keep up. I felt helpless to stop the spinning of my own mind. It was also a month of gathering stories, memorizing faces, collecting moments.
December
December was the apology I never knew how to write. It was days upon days lived in a perpetual state of fear, of panic, of grief. It was losing my mind slowly. I didn't try to understand it all. I went through the motions. I didn't write, didn't let my mind run away with the endless possibilities that were churning inside of my skull. I didn't let the brokenness of the month, and of all the months that have come before it, catch up with me.
2013 was a year of firsts, a year of being completely broken open. As a whole it was probably filled with more tears than any other year, more grief, more moments I didn't know how to comprehend. I told my secrets to the stars and wrote poetry on the side of coffee cups and crawled my way up out of the grief.
I'm coming out of 2013 not at all the same person who walked into it. I've been forever changed by the things that happened this year. I questioned my whole life, and am on a quest for answers. I cried, screamed, felt and wrote my way through this year. Because sometimes that's the only way you can do it.
I carry more anger now, am more jaded, more scarred. The world doesn't make sense to me anymore, not in the way it used to.
But, despite all the grief I carry with me from this past year, it was also full of good things. I felt the world inside of myself, and started (As I always am) making peace with it. While I lost people, I also met some amazing people, people who make me laugh and fill me with hope and encourage me to be a better person, to "write with blood" and to experience life. I had moments when I felt truly alive. I fell in love with people, with things, with the world despite it's brokenness.
"You'll need coffee shops and sunsets and road trips. Airplanes and passports and new songs and old songs, but people more than anything else. You will need other people and you will need to be that other person to someone else, a living, breathing, screaming invitation to believe in better things"
"Sometimes its the smallest things that save us: the weather growing cold, a child's smile, and a cup of excellent coffee."
Sunday, December 15, 2013
Peace, Be Still
This week I've been restless.
I ended up in a busy hospital, once again being reminded of this fight that I'm in.
For days I tossed and turned, in physical and emotional pain, repeating to myself over and over that this shouldn't be my life.
But it was and it is the life I was given and as thoughts raced through my mind of all the things I should get done and all the things I should be doing I realized something.
I've been lacking peace.
I read an article about something called guilt away. It's an article I keep coming back to because I tend to have this issue with guilt.
I also tend to be pretty hard on myself, somewhat of a perfectionist when it comes to having everything in a neat little row. I thrive on stress and chaos but I have to be able to manage the stress and chaos.
So last night I was lying in bed thinking about all the school work I'm missing and how I should have been back out there a few days ago pushing myself and how if I really tried I would be fine. (If you couldn't tell, the voices in my head are pretty critical. I'm working on that.)
And I realized that I, in no way, need to feel guilty, about anything. The world will keep turning without me being involved in every little part of it. Teachers will be gracious and friends will understand and the work will still be there when I return. What am I feeling guilty about?
I felt guilty for a really long time. I still feel guilty a lot of the time. And I'm tired of it.
So this morning I was going through that eternally long list of things in my head that I should be doing and I was nudged to check out this blog.
I was feeling pretty restless, pretty anxious, wound up, and the video I watched was on peace.
Peace, be still.
Everything sort of fell into place and I felt myself breathe.
This, life, isn't about anxiety or guilt. And yet I've been stuck in that place.
I've been stuck in a place of anxiety, of trying to micromanage the world and control things, and I forgot about the peace I am promised.
A peace that passes all understanding.
I am quick to forget. I am quick to get caught up in the hamster wheel in my head that spins madly.
I question and I struggle and I fight against that when I finally let peace wrap itself around me like a blanket it feels like an exhale.
This is where I belong. Not in a place of anxiety and control, but in one of rest, one where I can sink back into the provision, the comfort, the promise.
Peace
I am here for a reason. Here, in this place, in this situation, for such a time as this. And when I get wrapped up in where I think I should be, what I think is wrong, not feeling good enough, I am robbing myself of peace. I fall back into what I know: anxiety, fear, guilt.
How long will it take until peace becomes a habit? Until in every moment I can find that golden glimmer of peace that I am promised, the one that feels like an exhale and whispers to me Be still.
Be still, for when life feels hard and trying there is always hope
Be still, for when you do not understand there is a peace that passes all understanding that will cover you
Be still, for in the dark seasons of your heart there is this tiny green shoot called joy stemming from the barrenness, waiting to be noticed in every moment
Be still, for when you feel anxious and tied up in knots, lacking in understanding, there comes love to gently remind you of the truth.
Peace is what is promised to me. It is what transforms the slave into a free man. It is the whisper to my heart in this season.
Peace, Be still. Be still and Know.
I ended up in a busy hospital, once again being reminded of this fight that I'm in.
For days I tossed and turned, in physical and emotional pain, repeating to myself over and over that this shouldn't be my life.
But it was and it is the life I was given and as thoughts raced through my mind of all the things I should get done and all the things I should be doing I realized something.
I've been lacking peace.
I read an article about something called guilt away. It's an article I keep coming back to because I tend to have this issue with guilt.
I also tend to be pretty hard on myself, somewhat of a perfectionist when it comes to having everything in a neat little row. I thrive on stress and chaos but I have to be able to manage the stress and chaos.
So last night I was lying in bed thinking about all the school work I'm missing and how I should have been back out there a few days ago pushing myself and how if I really tried I would be fine. (If you couldn't tell, the voices in my head are pretty critical. I'm working on that.)
And I realized that I, in no way, need to feel guilty, about anything. The world will keep turning without me being involved in every little part of it. Teachers will be gracious and friends will understand and the work will still be there when I return. What am I feeling guilty about?
I felt guilty for a really long time. I still feel guilty a lot of the time. And I'm tired of it.
So this morning I was going through that eternally long list of things in my head that I should be doing and I was nudged to check out this blog.
I was feeling pretty restless, pretty anxious, wound up, and the video I watched was on peace.
Peace, be still.
Everything sort of fell into place and I felt myself breathe.
This, life, isn't about anxiety or guilt. And yet I've been stuck in that place.
I've been stuck in a place of anxiety, of trying to micromanage the world and control things, and I forgot about the peace I am promised.
A peace that passes all understanding.
I am quick to forget. I am quick to get caught up in the hamster wheel in my head that spins madly.
I question and I struggle and I fight against that when I finally let peace wrap itself around me like a blanket it feels like an exhale.
This is where I belong. Not in a place of anxiety and control, but in one of rest, one where I can sink back into the provision, the comfort, the promise.
Peace
I am here for a reason. Here, in this place, in this situation, for such a time as this. And when I get wrapped up in where I think I should be, what I think is wrong, not feeling good enough, I am robbing myself of peace. I fall back into what I know: anxiety, fear, guilt.
How long will it take until peace becomes a habit? Until in every moment I can find that golden glimmer of peace that I am promised, the one that feels like an exhale and whispers to me Be still.
Be still, for when life feels hard and trying there is always hope
Be still, for when you do not understand there is a peace that passes all understanding that will cover you
Be still, for in the dark seasons of your heart there is this tiny green shoot called joy stemming from the barrenness, waiting to be noticed in every moment
Be still, for when you feel anxious and tied up in knots, lacking in understanding, there comes love to gently remind you of the truth.
Peace is what is promised to me. It is what transforms the slave into a free man. It is the whisper to my heart in this season.
Peace, Be still. Be still and Know.
Sunday, November 24, 2013
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.
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.
Sunday, November 17, 2013
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.
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.
Friday, October 4, 2013
Peace
You don't have to know what to say. You don't have to understand. But you do have to make words. Use your words.
When I was younger, my parents would always remind me to use my words. And through my growing up years I've heard that phrase echoed many a time.
But what happens when you don't know how to make words? What happens when you feel so much inside of you that there are no words?
I sat in the library this morning next to a boy who's in my biology class. My thoughts were going off in so many different directions and I felt completely broken.
"Are you ok?" He asked me. I looked up from my text book, the one I hadn't really been reading. He was watching me, with his big brown eyes.
"I don't know how to do this..." I said, meaning more than just the biology work set out before me.
"I know," He replied.
And somehow it wasn't the wrong thing to say.
He watched me for another minute before turning back to his own work and I stared at the clock and counted down the minutes.
There's this thing they call survivor's guilt. It's found in people who have survived a traumatic event, such as combat, natural disasters, epidemics and suicides.
The inside of my left wrist has seen far too many names in the past little while. Names of those I know who have died. People who died while I survived.
Right now the black ink has been rubbed off because of the bracelets I was wearing this morning, but the letters can still be made out.
Peace
My own broken heart has been beating rapidly all day, pounding against the inside of my chest. I am reminded of the journey I am continually walking, one I don't understand, one that is breaking me in so many ways.
I am so tired. I can barely find the strength in me to lift my head, to keep fighting, to keep this broken heart beating.
And there are moments, when you slip into bed at the end of a long day, or standing before a rising purple sun after hearing news like the kind I got this morning, and you think "How long can I keep doing this?"
My own broken heart beat a little faster today, as her little broken heart ceased to sustain life. Under the rising sun I fell to my knees because this isn't something I understand. My heart is heavy and full of things I can't yet make sense of, and it slams against the inside of my chest reminding me of this little one who's heart is whole now, a little one who is connected to me, from one broken heart to another.
I am broken. I am worn. I am tired of fighting this battle and I am tired of losing and I'm just plain tired. I can barely find it in me to hold myself up. I don't understand.
And even in all of this...
Peace
When I was younger, my parents would always remind me to use my words. And through my growing up years I've heard that phrase echoed many a time.
But what happens when you don't know how to make words? What happens when you feel so much inside of you that there are no words?
I sat in the library this morning next to a boy who's in my biology class. My thoughts were going off in so many different directions and I felt completely broken.
"Are you ok?" He asked me. I looked up from my text book, the one I hadn't really been reading. He was watching me, with his big brown eyes.
"I don't know how to do this..." I said, meaning more than just the biology work set out before me.
"I know," He replied.
And somehow it wasn't the wrong thing to say.
He watched me for another minute before turning back to his own work and I stared at the clock and counted down the minutes.
There's this thing they call survivor's guilt. It's found in people who have survived a traumatic event, such as combat, natural disasters, epidemics and suicides.
The inside of my left wrist has seen far too many names in the past little while. Names of those I know who have died. People who died while I survived.
Right now the black ink has been rubbed off because of the bracelets I was wearing this morning, but the letters can still be made out.
Peace
My own broken heart has been beating rapidly all day, pounding against the inside of my chest. I am reminded of the journey I am continually walking, one I don't understand, one that is breaking me in so many ways.
I am so tired. I can barely find the strength in me to lift my head, to keep fighting, to keep this broken heart beating.
And there are moments, when you slip into bed at the end of a long day, or standing before a rising purple sun after hearing news like the kind I got this morning, and you think "How long can I keep doing this?"
My own broken heart beat a little faster today, as her little broken heart ceased to sustain life. Under the rising sun I fell to my knees because this isn't something I understand. My heart is heavy and full of things I can't yet make sense of, and it slams against the inside of my chest reminding me of this little one who's heart is whole now, a little one who is connected to me, from one broken heart to another.
I am broken. I am worn. I am tired of fighting this battle and I am tired of losing and I'm just plain tired. I can barely find it in me to hold myself up. I don't understand.
And even in all of this...
Peace
Tuesday, September 10, 2013
Year One
If you would have told me a year ago that I would be here today, I wouldn't have believed you.
Because a year ago today my world was shaken and I found it just a little bit harder to breathe. I was just a little bit broken.
Because there's no hiding from the truth when it looms before you on a prescription pad, glaring evidence of everything that went wrong.
I fought to get here. I was broken and, at one time or another, during those very dark first few months, I thought my situation was hopeless. I got angry, I cried and screamed and lost it and some days I didn't want to get out of bed.
There was overwhelming guilt, and the frustration and agony that comes with not understanding what is going on inside of your own body and being responsible for your own downfall. Those first few months were agonizing. I spent days and weeks and months trying to define for myself what this new life would look like, because I didn't know how to live anymore. I had to find, and speak, my truth, and I had to learn how to be authentic in a world where everyone was telling me who to be and how to act and what I needed to do.
A year ago today I got the news that changed my life and my world caved in and I fell into the depths of it for a while. Some days I didn't want to live in the dark abyss my life had become.
5 long, trying, exhausting months later, in a church pew, I finally broke. I was buried in an avalanche of guilt and fear and exhaustion and sickness and pain and grief and I basically told God that if He wanted me to live, He better do something because I wasn't going to live like this.
And, obviously, not too long after that, my life began to change.
So I'm sitting here today, in a place I never thought I would be. I'm rising up from the ashes, like a phoenix.
And while some days are still unspeakably hard and my heart is still scarred, I made it through my first year.
On this anniversary day, I do think back to what could have been. It's hard not to think about what your life could have been like or should be like or...
But the what it's don't matter. All they do is make it impossible for me to heal.
So I'm looking back on the past year with gratitude, and maybe a bit of sadness for the girl who took so long to figure out that you get to choose what defines you, and that sometimes terrible things don't break you, but save you.
Because a year ago today my world was shaken and I found it just a little bit harder to breathe. I was just a little bit broken.
Because there's no hiding from the truth when it looms before you on a prescription pad, glaring evidence of everything that went wrong.
I fought to get here. I was broken and, at one time or another, during those very dark first few months, I thought my situation was hopeless. I got angry, I cried and screamed and lost it and some days I didn't want to get out of bed.
There was overwhelming guilt, and the frustration and agony that comes with not understanding what is going on inside of your own body and being responsible for your own downfall. Those first few months were agonizing. I spent days and weeks and months trying to define for myself what this new life would look like, because I didn't know how to live anymore. I had to find, and speak, my truth, and I had to learn how to be authentic in a world where everyone was telling me who to be and how to act and what I needed to do.
A year ago today I got the news that changed my life and my world caved in and I fell into the depths of it for a while. Some days I didn't want to live in the dark abyss my life had become.
5 long, trying, exhausting months later, in a church pew, I finally broke. I was buried in an avalanche of guilt and fear and exhaustion and sickness and pain and grief and I basically told God that if He wanted me to live, He better do something because I wasn't going to live like this.
And, obviously, not too long after that, my life began to change.
So I'm sitting here today, in a place I never thought I would be. I'm rising up from the ashes, like a phoenix.
And while some days are still unspeakably hard and my heart is still scarred, I made it through my first year.
On this anniversary day, I do think back to what could have been. It's hard not to think about what your life could have been like or should be like or...
But the what it's don't matter. All they do is make it impossible for me to heal.
So I'm looking back on the past year with gratitude, and maybe a bit of sadness for the girl who took so long to figure out that you get to choose what defines you, and that sometimes terrible things don't break you, but save you.
Friday, August 9, 2013
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.
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.
Friday, April 26, 2013
Bleeding Red
Grief is messy
It's scratching at the surface, under my skin
It's a discomfort that makes me want to pull out my hair
It's anger and tenacity which sometimes gets mistaken for strength
It's fear, and vulnerability
It's desperation
It's neediness
I've described it on a number of occasions as bleeding out
I got sick, and then I got diagnosed, and through out this whole ordeal I've been feeling like I'm bleeding out
It's the little things you notice first
it's the pale skin, and the tired eyes
And then comes the irritability, the anger, the moodiness
It's this ache in my chest, right where my heart is. It's gory and messy. It doesn't hurt really. It's just this small twinge whenever I walk or talk or laugh or breathe
Loneliness, desperation, neediness
These are all symptoms of the bleeding out
Maybe it's a good thing. maybe it means one day I'll have all new blood, healthy blood
But for now, it just hurts. It's sticky and red and it's not neat and pretty
I tend to edit myself a lot, to make things sound poetic and neat. I tend to miss capturing the raw and the real and the honest on paper.
In these bleeding out days, I think it's my fragility that scares me more than my mortality
Death doesn't scare me. Neither do needles, or doctors.
What scares me is this sort of desperation that needs to make everything ok, the neediness I feel, the vulnerability I am forced to succumb to.
I kept waiting for someone to notice me, to pay attention to that pale girl losing blood over there in the corner. But it didn't really happen.
No one offered to tend to my grief, or sit with me, to acknowledge that what happened to me was not ok and awful and world changing.
But the world kept spinning. Life went on.
And so I did it myself. Or I tried to.
I wrote too much and watched too much television and threw all my time and energy into eating the right foods and complained too much and avoided friends because I wasn't brave enough to trust them with my grief. After all, it was all I had left of normalcy.
I was looking for a cure, for some magic to not necessarily take away my conditions but to minimize that gaping hole in my chest it seemed only I could see and make it stop hurting, make me stop feeling like I was losing blood every time I took a breath.
I wrapped myself up tight in un-forgiveness and anger and isolated myself, tied the cocoon I'd made myself up tight and stamped it shut, locking myself inside.
With bare hands, I'm digging through all this gory, messy blood that's coming out of me.
It's not pretty, and it's not fun.
It's exhausting and lonely and it scares the crap out of me and I still don't have all the answers on how to stitch myself back together.
For now it's just duct tape and staples.
But as I look through all this gore and misfortune, as I look at myself in the mirror and see the things other people look past (The pale skin and the tired eyes, the stickiness from the metaphorical blood that keeps coming out of me), I see something else too.
I see life.
It's red and it's sticky and messy but it's a sign I'm still alive
So the blood keeps coming. Soon, I imagine, it will stop pouring out of me and I'll start to build new blood, better blood.
Soon, I imagine, it will stop hurting and aching and the grief will stop feeling so consuming and I'll stop feeling so angry and desperate and lonely and vulnerable. At least, I hope so.
But until then, until that hole in my chest stitches itself closed and the new, better blood comes and it all nudges me back up to live, I'll just sit here, with my pale skin and tired eyes and all those other symptoms of the metaphorical bleeding out that's going on inside of me, because this bleeding out is all I have left of the before.
It's scratching at the surface, under my skin
It's a discomfort that makes me want to pull out my hair
It's anger and tenacity which sometimes gets mistaken for strength
It's fear, and vulnerability
It's desperation
It's neediness
I've described it on a number of occasions as bleeding out
I got sick, and then I got diagnosed, and through out this whole ordeal I've been feeling like I'm bleeding out
It's the little things you notice first
it's the pale skin, and the tired eyes
And then comes the irritability, the anger, the moodiness
It's this ache in my chest, right where my heart is. It's gory and messy. It doesn't hurt really. It's just this small twinge whenever I walk or talk or laugh or breathe
Loneliness, desperation, neediness
These are all symptoms of the bleeding out
Maybe it's a good thing. maybe it means one day I'll have all new blood, healthy blood
But for now, it just hurts. It's sticky and red and it's not neat and pretty
I tend to edit myself a lot, to make things sound poetic and neat. I tend to miss capturing the raw and the real and the honest on paper.
In these bleeding out days, I think it's my fragility that scares me more than my mortality
Death doesn't scare me. Neither do needles, or doctors.
What scares me is this sort of desperation that needs to make everything ok, the neediness I feel, the vulnerability I am forced to succumb to.
I kept waiting for someone to notice me, to pay attention to that pale girl losing blood over there in the corner. But it didn't really happen.
No one offered to tend to my grief, or sit with me, to acknowledge that what happened to me was not ok and awful and world changing.
But the world kept spinning. Life went on.
And so I did it myself. Or I tried to.
I wrote too much and watched too much television and threw all my time and energy into eating the right foods and complained too much and avoided friends because I wasn't brave enough to trust them with my grief. After all, it was all I had left of normalcy.
I was looking for a cure, for some magic to not necessarily take away my conditions but to minimize that gaping hole in my chest it seemed only I could see and make it stop hurting, make me stop feeling like I was losing blood every time I took a breath.
I wrapped myself up tight in un-forgiveness and anger and isolated myself, tied the cocoon I'd made myself up tight and stamped it shut, locking myself inside.
With bare hands, I'm digging through all this gory, messy blood that's coming out of me.
It's not pretty, and it's not fun.
It's exhausting and lonely and it scares the crap out of me and I still don't have all the answers on how to stitch myself back together.
For now it's just duct tape and staples.
But as I look through all this gore and misfortune, as I look at myself in the mirror and see the things other people look past (The pale skin and the tired eyes, the stickiness from the metaphorical blood that keeps coming out of me), I see something else too.
I see life.
It's red and it's sticky and messy but it's a sign I'm still alive
So the blood keeps coming. Soon, I imagine, it will stop pouring out of me and I'll start to build new blood, better blood.
Soon, I imagine, it will stop hurting and aching and the grief will stop feeling so consuming and I'll stop feeling so angry and desperate and lonely and vulnerable. At least, I hope so.
But until then, until that hole in my chest stitches itself closed and the new, better blood comes and it all nudges me back up to live, I'll just sit here, with my pale skin and tired eyes and all those other symptoms of the metaphorical bleeding out that's going on inside of me, because this bleeding out is all I have left of the before.
Monday, April 22, 2013
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/
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/
Tuesday, April 16, 2013
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.
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.
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