Veins in the Snow, Action Days, Disability/Unability, and a poem that only one other person in the world could completely understand

IMG-20130117-00793 Have you ever noticed the way that snow looks like it has veins?

There are thousands of us. Millions.

Sometimes I get over a hundred emails in one day. I usually read them all. There is a lot happening out in the world.

This month alone there are hundreds of community events. However, it doesn’t seem like too many people can attend or participate in many of them. There is just too much to fight for.

I wonder what would happen if thousands of people did the same thing? If everyone, for example, put the same sort of sign on the back of their car or wheelchair or backpack, sent some letter to representatives, walked in or out of some place, attended the same conference?

That’d be a lot of people working together. What could a collective cross-disability movement focus on?

Sovereignty? Liberation? A chance to live self-directed lives to the utmost extent possible? The logistics of the degree of collaborative organizing that such a broad movement would require are a little staggering.

I personally don’t have a disability. Except I do, on paper. I have a set of words that accompany my name and which inform people that I have a condition considered to be severe and persistent. Most people believe these words to be a disease. I don’t get paid for my disability, though.

I have never, however, been able to work 40 hours a week in the traditional sense…at least not for long.

My family “helps me” and I live on less than 1,000 dollars per month, which is actually a lot. I “work” less than 15 hours a week, but I write thousands and thousands of words and I daydream some of the biggest daydreams in the world.

If it weren’t for my family, I’d probably be homeless. Then again, if it weren’t for my family…well, let’s just say things might have turned out differently. I like how they turned out though. My life is interesting to me.

I have not had health insurance for two years and I do not receive regular medical care. Fortunately, I don’t seem to get sick often.

When I should have applied for disability, I was unable to fill out the paperwork or go through the process of ordering medical records. I was genuinely disabled. There were things I could not do. Those disabilities were related to the effects of “treatment” AND my own human limitations of adaptive coping.

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It occurred to me on the plane that towns look a little like cancer from above.

How exactly do you adapt to living in a state of coercive hell?

I am not disabled. I am disabled. Rather, I am unable?

I was de-abled?                                      No. It all has to do with this:

1. The awfulness of many modern work environments. The lighting. The air. The sounds. The smells. The sameness.

2. The effects of cognitive/emotional/spiritual orientation that makes it impossible for me to forget or deny that a whole world exists

3. My individual energy and temperament and my inability to lie and my disdain for hierarchical power structures that won’t let me nap in the afternoon and make me care about things I don’t care about.

4. Having to “go to work” when I need to be quiet can be detrimental, though not so much as it was.

I am figuring out ways to make my way.

Compared to a couple of years ago, I am holding thoughts together well. This new adventure in graduate education is going to be good exercise.

Unless you’ve read a lot of this, you probably don’t know that there was a time when I could barely hold onto a thought at all.

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Since I seem to have been doing multi-posts lately (like gathered mini-chapters in a book that might not make sense unless you read the whole thing, or unless you are me) I’ll go ahead and add these notes from the airport hotel.

I just got home late last night and my roommate had left dishes in the sink. The house was cold. My room smelled weird.

It was good to leave and return, somewhat transformed.
Re-abled just a little more.

020

WEDNESDAY
Today was the last day of the graduate school conference.

I have already written a number of words about “the intersection between constructs of psychology and mental health and our human potential, both at the individual and collective levels. I’d like to explore the role that narrative may play as a catalyst in consciousness shift and how spirituality impacts our human experience. Additionally, I’d like to survey the available literature on the ways that trauma and stress affect and are affected by cognitive and sensory processing styles.

Relatedly, I’m interested in learning more about the ways that alternative modalities of mental health care, such as peer and community support, non-medical education, and respite may be used to promote both individual and systemic recovery. Because I’d like very much to see real and measurable shift in our paradigms of culture and practice, issues around activism and effective multilateral collaboration are of interest to me, as well.”

Oh, there’s more…

Fortunately, by writing emails to myself, as I am doing now, I am able to identify how endeavors might be dovetailed, meaning that actions and interests can be structured in such a way that they are mutually reinforcing and that work done in one area may support work done in others.

When my advisor for the Social Transformation aspects of my program of study asked me how the week had been, I said, appropriately: “It’s been…transformative.”

Small mutually pleasant and polite laughter followed, and then the question: “Well, what were some of the highlights…”

I listed a few things and noted that it had been a very spiritually powerful trip, not just the part about inclusive envisioning and spirits of the drum, or the part where I told a story about my grandmother and a person I respect was moved or how much I learned when…etc. etc.
…but also that I made friends, including one who played me a song from back in the days when I relied on radio to help me to stay alive.

“I don’t know why I’m not crying.”

(I thought maybe that I had walls.)

“Why do I have these walls?”
It wasn’t until later that I realized that the reason I wasn’t crying was that I was happy.

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I WRITE GOOD LETTERS.

Thank you, as well. I hope your day has been (…) (<~ interpret that however you’d like. (“Wonderful” “Beautiful” “Just What It Is” ?)
I appreciate you taking the time to put together all that ‘good stuff’ to check out. I have only glanced at it thus far, because it is hard to find space to be present on Tuesday and I’d like to hear the songs and read the words, rather than just go through the motions of doing so.
Do you remember that I mentioned (did I mention to you?) that I had been resistant to seeking deep knowledge about awakening (in the expansive sense of the word) by way of explicit human teachings? There are so many theories of consciousness and spirit and I knew I could get lost, get distracted.
(I might have also been frightened, because I knew it might (it will) change my life and make the more constraining aspects of it…oh, I just understood something with clarity. Hugely.)

I just watched the clouds and listened to the sound of my heart breaking and slow blooming like lightning.
I wrote down the words that seemed true and saw how foolish I’d been when what felt like the real truth came flying out of a small bird’s beak and I knew that I would never die.
There is a value in letting the world teach what it wants to by way of stumbling dialects, the history of daydreams and geometry, old song and glossolalia.
I don’t even know what that word means, but I think it’s beautiful. It sounds like a plant, like light reflected on the color green.
That being said, whatever that was, I held off on trying to learn the words and learn the practice, any practice.
I waited and have been waiting, crowdsourcing love and bits of information with strange and wonderful names and stories.
Did you know (I know I didn’t tell you) that I sat on my porch so many times, pleading…please, let somebody help me to understand. Let somebody give me the information I need to know, but cannot seek out because…there’s just too much meaning and too many links?

“Show me the golden thread.” It all unraveled and I picked up the end.

I begged.
This is where the houseless come in…and a hundred different strangers, birds, songs on the radio and friends such as yourself.
Thank you for being in the world.
Oh, below my name is the prose-y poem I wrote about the poem that I gave you.
Faith

The Stone that Is A Poem

There could have been words
about missed cake
or a yellow balloon
under squares hung
with beaded strands
and filled with light

I saw your tears
and I love people
who have water in their eyes.

Wouldn’t that be everybody?

Yes. Yes, it would be
and yes it is
and yes we are
in that space
held between hands
like something loose and leafy
that can be pressed into a ball
to be passed back and forth
in play

There could have been words like that.

Look, right above you,
there they are!

Everything that could be
somehow is.

I’m sure I said thank you, but let me thank you again.

It takes a lot of love to see a stone as a poem.

You saw my heart, in moments, and that was a gift, not from me to you, but the other way around.

I’d write a poem about that, if I hadn’t already.

I held that small world in my hands through the morning, seeing how the clouds were born within it, the brown of the earth, the white space of sky, the water from your eyes…

There is fire in there, with all those things.

I felt it.

You are my friend in the world and, for that, I thank you.

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2 thoughts on “Veins in the Snow, Action Days, Disability/Unability, and a poem that only one other person in the world could completely understand

  1. You’re entries are so multi-faceted- I feel I should devise some sort of a system to properly acknowledge the significance of each of the various elements within your posts.

    You share so many observations about yourself that I could just copy and paste into here and say “Me too- I’m the same. EXACTLY.” These are personal qualities that I cherish and consider to be of utmost value, but they have also made me an outlier in this confused society. That said, I am proud to be an outlier in such a place, but sometimes I just want to connect with others- in friendship and in love- and that’s often been very hard and painful for me. This brings me to your mention of the role that narrative can play as a “catalyst in consciousness shift” and the impact spirituality has on our experience (forgive me if I misunderstand)…

    I believe a key component to shifting consciousness is a matter of redefining or reaffirming our identities as both individuals and as members of a collective. We all tell ourselves stories. These stories create and shape our perception of ourselves and the very thing we call reality.
    When I was 21, the inadequacy of the incomplete story that had shaped my personal paradigm caught up with me and I came apart at the seams. The only strands holding me together (loosely) were those aspects of my consciousness that were still connected to an existentially meaningful (personal) reality. Those very sacred strands should have been considered vital to my healing, but instead they were completely disregarded (desecrated, really) and I was deemed mentally ill and put on “antipsychotics” and “mood stabilizers”. Soon after that I began to tell myself a new story- “I am different, but it’s not a good thing at all. I’m f****d up- I’m mentally ill.”.
    Thankfully, as truly messed up as I was (due above all else to the poison I was taking, believing it to be medicine), I had not completely relinquished those strands that I would later use to sow the fabric of a stronger identity, a different reality- a new story.
    A big step in my personal evolution has been the realization that I am capable of defining my self and my reality on my own terms. This has been, for me, a matter of self-actualization. I’ve also been resistant to external influences, even when I identified with them on some level, and have devoted a great amount of energy to learning how to define and understand things on my own terms (even as in “using my own terminology”).
    It was never enough for me (nor should it have been) to simply identify as being “different”. In a sense, that’s no better a label than any psychiatric label. Out of a fundamental need to discover my own true identity, I’ve been exploring my inner self, the world, and the Universe- and creating and discovering the stories that are most meaningful to me. Sometimes they incorporate stories that draw upon existing religious, scientific, and philosophical traditions, but they have largely come from the wellspring of my own imagination (my consciousness).
    This brings me to the impact that spirituality has had on my experience.
    One story I’ve come to believe is that my consciousness is not mine alone. I’ve come to this conclusion because, like you Faith, there is so much truth and beauty that is revealed to me not only through observation, but also through introspection- through my thoughts, feelings, and intuition; there is something that expresses itself in my writing and my art (I’m a songwriter and a musician) that I can’t say comes from only from me. And if my consciousness is not mine alone, then I am not alone. This knowledge empowers me and enriches my experience, and has been very helpful for me. It is helping me heal and become a more complete person. I had in a sense come to understand this in 2002 (my first “episode”), but there was a confluence of factors that led to what was essentially a nervous breakdown, instead of a personal spiritual breakthrough. This has given me insight into one aspect of why so many people turn to religion (to “God”). But I never believed in God in the theistic sense, and I’m very opposed to organized religion.
    I now believe that the Universe communicates through many of us (if not all of us)- through me and through you. We are, after all, not just living IN the Universe- we ARE the Universe (I find great spiritual meaning in Einstein’s E=mc2 equation).

    So there is some of my personal experience with narrative acting as a catalyst for a shift in consciousness and the impact spirituality can have on the human experience (in this case, mine). Obviously the two are often (if not always) intertwined, and can work in harmony.

    I may have completely missed the mark with that whole thing in terms of what you were suggesting, but I imagine you’ll find some interesting material here anyhow.

    In the context of therapy in general, and recovery from traumatic experiences (in both childhood and adulthood), I believe helping people define or reaffirm their OWN spiritual awareness can be of utmost value.

    It’s really late, and I’m kinda out of it. I’ve got nothing but insomnia and time on my hands at the moment. I hope this isn’t too disjointed. I guess it’s more like a blog post than a comment. I think I might have taken myself a little tootoo seriously. Oops.
    Whatever- you’re writing apparently inspires me to write.

    Thanks Faith,
    Julian

  2. Again, I read your comment-words first thing in the morning and was grateful that some small connection had been made, my life and times twined with some story that is unfolding at the end of a diagonal line across this country. You understood perfectly. “EXACTLY.”

    I feel like giving you a high five, Seroquel Nation – for your honesty and for, in your way, really getting it. My own story has a lot of the same landmarks that you noted in your own: breakdown, deception, misunderstanding, reclamation, searching, learning to trust the truth we feel in our hearts and in the world.

    Sometimes I think about why I write this. Clearly, this is a personal blog written to meet personal needs, but it is also written for all of the outliers. That is a term I have used to describe myself, too.

    I have met so many people – friends, strangers, voices, songs – that have traveled this same path…this long road to becoming who we may best be in a world that likes to tell us we are nothing, that our deepest light, darkness, instincts and dreams are not real…that who we are is not real and that what we hope for in our lives and in the world is not real.

    I think that you are absolutely correct in your sense that there is *something* – some greater consciousness, some strand of meaning – and that we feel it, that it finds us and we know it, and it works through us…through our songs and words, our pictures and clanging poems.

    That is where my interest in cognitive and sensory processing styles comes in, because I have realized that there are a lot of people that (in their own way) experience the world as I do…as flickering message and synchronous symbol, evolving diagrams behind closed eyes that link our small stories to something bigger than we are, that links us to eachother and to the contemplative spirit of birds on a wire.

    Somewhere here I have explained how I think that it all works, but I have no idea where. :) We do, however, have to determine our own sense, our own way of understanding. It’s interesting to me that we (you and I) seem to share a reluctance to take on someone else’s version of the workings of the world. I had to make my own meaning, my own map, so that I could learn how to navigate the currents and landscapes as I experience them.

    This is what gets me: I know that there are thousands and thousands of people, my outlier kin, who are sitting trapped in the miasma of chemical restraint, their lifeforces blunted by neuroleptics. They are sitting in rooms and sleeping dreamless sleep and that they spend whole days in silence, biting back the poetry and messages that rise in their bones, leaving them to splinter and dissolve under the force of fear.

    With all of the recent calling for “more treatment” there are people who will be trapped in the worst sort of stories, as we once were. They will be held in place by false criteria imposed by cruel rubrics that don’t allow for brilliance, that don’t allow for vision, that don’t allow for this sort of difference…a difference that I’ve come to suspect is somehow vital.

    I’m so glad that we survived.
    I want others to survive.

    I’d like to hear the music you make.

    Thank you for writing. I’ve been known to begin blogposts as comments, too. :)

    Much love and appreciation from these old mountains…

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