523: Aspergers and the MTHFR Gene

It’s been over a year since my five ER visits and week-stay at the hospital. I am ready to be proactive again in regards to my health, even as I have lingering post-traumatic stress from the care I received while in hospital, e.g., not believing I was sick, accusing me of creating my symptoms, referring me to psychiatric care, insisting it was Fibromyalgia, refusing to do tests, refusing to keep my hospitalized for care, etc.

Turns out, after a two-hour tilt-table test at the University of Washington Hospital and conclusive evidence read by a specialist that indeed I do have a ‘real’ condition. A condition closely related to POTS Syndrome. The key for me is to keep up my potassium and sodium levels, stay hydrated, and not over-do it. I drink lots of coconut water and take pink Himalayan salt and a variety of supplements. I was also diagnosed with joint hyper-mobility syndrome (possibly EDS) which is a probable cause of my POTS-like Syndrome.

My symptoms prior to going to the ER last year were weight loss, hair loss, loss of appetite, neuropathy of all limbs, autonomic dysfunction (including digestive pain, not being able to sleep or sit up, heart rate of 160 standing/120 sitting), chest pain, mid-back pain, all over fatigue, weakness, shaking, and generalized pain. I’d spent a good month in bed before the symptoms worsened. Also, I had signs of dehydration—white tongue, etc.

It still amazes me the doctors thought I could control my heart rate, and literally make it go from 90 resting to 160 standing and back down to 90 resting. They must have thought I had super powers. Or they just didn’t want to face facts that I might have a RARE condition!

Anyhow, because of the stress of being in and out of hospitals and seeing multiple specialists, I never wanted to see a doctor again in my life. I have since, but not because I wanted to go.

However I am ready now to get some blood work done, after briefly reading about the MTHFR Gene. (Thanks to a reader for telling me about it.) I have been trying remedies for years to rid myself of depression, fatigue, pain, and the like, particularly related to PMDD. This gene could be another piece of the puzzle. And if so, folate treatment could be the answer. I have listed a few links, the first ones that I found that helped me to understand the gene’s role in our bodies.

PMDD, POTS, and EDS (Ehlers Danlos Syndrome) are common with people on the spectrum. I thought this gene was worth mentioning, as well.

I started going back into my far infrared sauna today, too.

Another reader said MTHFR looks like MOTHER F***ER… which made me giggle.

Okay, here are the links. Step-by-step we are finding answers.

If direct links aren’t working, copy and paste.

http://mthfr.net/mthfr-resources/

http://www.nwimed.com/mthfr/

http://www.doctorbecky.net/mthfr.shtml

Much Love,

Sam

453: The Waterdrop

I have been caught in a rut. In a spiraling stream of water that is heading down the drain. I have forgotten I have the tools I need. I am reclaiming these tools today, at this moment.

Physically I have been sick, very sick. Mentally, I have been suffering. And spiritually I have been fighting some unrecognizable battle.

hospital me

I have found the answers, the passageway, my ‘out’ through careful observation of self, of others, and through letting go long enough to gain perspective.

I had a rumbling of insights that were more disturbing than pleasurable, like bad food on an empty stomach. I keep gurgling up something of self, and pushing it back down, in an attempt to stop this ghastly taste of me from penetrating my taste buds. I have been forging through the forest of reason in effort to find the end, the stopping point, the light into the resting field.

I have had no success in my futile ways. No success in the instigation of force or the instigation of spinning logic.

My only refuge has been in dismissing ego long enough to take a good look at the circumstances unclouded and without residue of pain and fear. To peek through the window as the observer and not the trembling wounded child. This has been difficult. Not an easy task: to dismiss the part of self that wants attention, recourse, answers, and love, and to let in the part of spirit that is complete. I have fought this process with clenched teeth and starving nails.

Essentially dragging my own physical self out of the cave she wished to remain within.

In stepping back and watching me gyrate, from one retched cave of bitter-pain to the next, I have noted the effect. I have witnessed how the deeper I dig in self-pity and remorse, the deeper I fall, and the more I attract further elements to solidify my pathetic state.

I have witnessed how like attracts like, how the more I became what others thought I was, the more I brought to me others who saw me the same.

Effectually, I was a metamorphosis in full swing, becoming what I focused upon.

I was told, while in a weakened physical state, that I was wrong. That I was twisted in my thinking. That I was creating my illness. I was told this repeatedly by doctors. But then the other doctors would come, and claim what illness I had. Explain to me the sickness, validate my physical pain. I could not find any reprieve. For one minute my reality was one person’s and the next the other’s.

I was so fragile in self, from the continuing weakened physical state, that I took on whatever the onlooker perceived me to be. I became a yo-yo in truth, vacillating based on a random output from others. One minute I was up with hope, one minute I was down. Of course, somewhere inside of me I became the judge and jury of right and wrong, of hope and no hope. I took the stimuli and decided within which person’s words were damaging and which were helpful.

Here was my first turn off the course of love: In thinking anyone beyond self could dictate who I was, how I felt, and how I would be.

I got caught up in the concept of time. In the clinging to output and the desperate need of outcome. I began to focus on the end and not the present. I began to fear the future and the unknowns. I forgot that there is no definite, there is not stagnant, there is no way to control anything.

Fear consumed me. And soon the past became my hauntings. And all I could here was the doctor’s judgments. I wanted nothing more than to be protected by the next onset of judgment placed on me. Nothing more than to sleep the time away and wake up outside of the hospital back in my bed with solutions, with the ability to live again, outside the debilitating illness.

My future became my only hope and my past my only nightmare. I was consumed in helplessness and dismal self-fear. I began to reach out for any glimpse of rescue. I began to panic. Terror took over, and I slipped further into the net of ego consumption. I became the feed, the broth, the stock for the over-bearing demolishing ghost of wanting. My desires took over. And everything began to collapse.

In my weakened physical state, having barely slept or eaten in weeks, I began to see everyone as the enemy. And in turn, they began to see me this way. This validated my worthlessness. This fed the fear further. Until, soon, there was nothing I could see clearly. I began running faster from my core self and began slipping further into self-demolishing-demise.

I was never depressed, but I was constantly forlorn and terrified.

None of what I had studied mattered. None of my angels could I hear. And none of my hope could I find.

People I knew found me in this state, and I became in their eyes what they wanted to see. I could feel it happening. A part of me watched as the others about me began to project their fears into me. I became a sponge of sorts, absorbing their negative energies—their shadows. Being an empath since birth this was my natural tendency. And being so weak, I had no will to protect myself from their self-reflection.

I became a mirror to everyone about me. I became sensitive to all their plights and pain. They put into me what I was putting out: disbelief, suspicion, fear, accusations, desperation, rescue. And the others, who were not in this state, the ones that were more content, more or less pleased with their world when they met me, they soothed my soul. I could feel their energy. Still it seemed some giant game of cat and mouse. I was being chased down by whatever mood the cat was in, either batted like paw to a string or scratched and scratched, the post itself.

Soon I was such a mess, I was hysterical. Fear entirely consumed me. I could not help but cry and rage. I exploded like a child. I was helpless in all degrees, every part of me severed. Still the observer of my own self watched from a distant, though he faded in and out now.

At home, the situation did not change. My children were enough dismissed by their own actions, that my mood and altercations did not affect them enough to project my fear back to me. But the adults were not as removed. They were too close to me. And soon I became what they saw, too. They absorbed my fear, and I absorbed theirs and we existed as this interchange of pain, blame, and desperation.

Had I known how to stop, I would. But I could not see the all as an extension of self. I could not see that the poison in me was leaking out everywhere. I was already so weak and afraid, and all I wanted was support, but my own power, my own ability to manifest from my emotional state my physical world, became my own greatest injury. I was limping by my own doing, using fear for a crutch, unable to look and realize the situation.

Soon more and more around me became my enemy, validating my worthlessness and fear. Soon their fear grew exponentially. At a time I needed nothing more than unconditional love and affection, I was judged, controlled, criticized and belittled. All of me became subject of fixing. Here I felt in defense and went into fight mode. Here I let fear entirely take over.

I’d forgotten how beautiful I am.

I discovered myself perpetuating this ‘fear,’ bringing this fear into other friendships and relationships. I began to spill out. And more and more ‘unfortunate’ events transpired. I don’t accept blame for my circumstance. I refuse to self-punish. I refuse to bring further fear into me. I also do not blame others. I spent enough of the past day doing so. I still have a quench of anger and a quench of distaste for those I encountered. But I recognize if others project into me, then I must in theory project into them. We are equal players. A tango exists, and neither is the leader or the follower, both trapped in this movement where fear is the dictator.

I have found my only refuge is in the continual release of all anger and blame; this means for self and others. Holding onto self-punishment or the punishment of others is detrimental.

I have remembered what I have been taught in the last two years, through readings, meditations, dreams, and daylight visions. I have been shown how to alleviate my pain and suffering through the release of past and present, through the release of all emotions not representational of love. I cannot go back and fix what has happened, nor can I make amends for what was. I only can stitch my own wounds back together with the thread of awareness and growth and confirm to self I did the best I knew with what I had. I can treat myself with self-respect and enough love to dispel the fear. I can let go of what will be of the future and what will come of the past. And stop replaying the ghosts in my head, the ones feeding me horrible lies of self. These are in my control: letting go, being in the present, focusing on love and love alone.

This is my life boat. To be. To love. To live.

home me

I have had a hard time of it for certain. In some ways, I know I created the chaos. In some ways, I know others were active participants. Where I end and others begin is still a grand mystery to me. Many a reader has told me I read his or her mind when I write. That I seem to capsulate the aspie experience. But what if they are reading mine? What if we are one mind? What if this is just one giant stream of consciousness, and I’m just a water drop with a voice?

450: The voice of my tears

I have been struggling with issues of the heart, both physical and spiritual. I have been to the emergency room five times and hospitalized for five days. I am still in a state of limbo, waiting to hear back about an appointment with the specialist. In time, I will collect my thoughts, and share more of this ordeal, one of the darkest nights of my soul. For now, I am leaking out bits of my own truisms. Here I have collected a few that have come through the echo of my heart ache. Much love to you. May you know I know your suffering and celebrate the life and light that is you.

I am tired of being misunderstood, seen and then unseen. I don’t know how to walk in this world. I don’t know how to be. Every effort is squashed. When I jump, I jump too far. When I reach, I reach too far. I don’t know how to stop, what I never knew how to start. It seems the only thing I know how to do in this crazy life is fall, to cry, to crumble, to be absolutely demolished despite my efforts, and to then pick myself back up and carry on. Nothing is simple anymore, and never was, and I long for that faraway place beyond complexity, where my mind is still, the ocean my very soul, carrying me in union cross the waters of tears.

*

Do you ever feel like your life is stuck in the second to the last chapter of a novel? You have reached the climax, emotions are on overdrive; you are about to unravel and discover all the truths that came before the foreshadowing, to behold your destiny, and at last reach your conclusion—the hero’s quest complete. When BANG, all the pages are torn out, the words blown away, and you are left hovelled in a puddle of nothing, wondering what happened to your story?

*

I am tired of people loving the parts of me they like, the parts that reflect them, the parts that bring them this self-created false comfort. I want to be loved in fullness, to a degree that has been lost in this world of dictated dangers and frailties. I want to be upheld for my goodness time and time again; not repeatedly told how I should mold and conform for another. I’m so busy trying to understand the complexities of bending for everyone into a shape they need in order to be recognized as worthy, that I get lost in my own self, searching for the light I was born with, a light I want to shine, at all costs, despite the blinding stares from the opposition. Cruel world, stop trying to make me into what suits you and criticizing me for what doesn’t. I have no limitations beyond the reflections pounced upon me.

*

I refuse to be happy when I am not. Covering up what we are in the moment is the cause of the destruction of this world. So much fear of being and feeling the uncomfortable. We have been taught to avoid with all cost the inevitable state of sadness. Sadness is okay. It isn’t scary. It isn’t wrong; and it’s not meant to be celebrated or snuffed out of existence. It just is. This place we call home could be marvelously better, if we each just embraced ourselves as is, in the illusion of flaws and failures; and like the emotion of sadness, if we just let ourselves be at a level state, beyond good and bad, right and wrong, then the whole of us would be free.

*

I love and respect myself in all my emotional states. None is better or worse than the other. All is a sea of me, intermingled and mixed; none is in and of itself, able to be extracted, labeled and classified. Each is a part of the magnificent whole of “We Are.” Each to be celebrated in their unity; reached in their effort; touched for being.

*

And she cried out, “Open your eyes and see, awake to the truth of you;” the only problem being that she no longer existed to convince them that their eyes were closed, no longer desired to point out the illusion of distraction, of trickery, of falsehood; all that she was in totality only wished to be free and wild and open; only the others, the ones with the imaginary views, they trapped her in their ways, making her believe she was the one forever asleep.

*

People aren’t blind. They are satisfied with the view. They forget what rests beyond the horizon. They forget that the eyes can’t cry for what the soul can’t see.

*

I loved you ’till the hollowed part of me emerged, and I saw myself emptied; in recognition of this absence, I wept for my return, only to find that you had filled the last of me; and all that remained was this broken shell of the girl I once was. I stand now, a woman formed in her dignity and gratitude, a woman thankful for whatever life was bled out of her; for in the weeping of red I was torn back into whom I had always been—the strength turned two-fold from what was lost and again found–a warrior rebirthed into existence.

*

Starvation and deprivation are two different things. One can be starved and not recognize the hunger, the pangs masked by preoccupation, but once one recognizes deprivation, a dying thirst erupts that cannot be quenched nor ignored. With starvation the soul slowly withers in unknown solitude. In deprivation the spirit calls out to be filled, to be watered, to have the life waters returned. I have often been starved for love but it was not until I awakened to my own deprivation that I knew what was missing.

(These are all thoughts I have had this morning)

446: Morning has Broken

A caring friend sent me an affirmation yesterday, as I am facing some health challenges and uncertainties.

An interesting thing has happened during this process of unknown. After about three weeks of literally freaking out—panic attacks, high blood pressure, rushing to the ER—I have grown weary of worrying about my ailments and future. I have grown plain tired of trying to figure things out, solve, and fret. And in so reaching exhaustion, I have found inner peace.

My body is seemingly out of control, doing all kinds of spastic things. I have some inklings of what might be happening, but for the most part I am in the dark. I’ve had plenty of time to reflect and digest this process, as I have been unable to partake in little physical activity, do to lack of energy and physical limitations, including pain that is further induced when I stand or sit upright.

Through this I have gained further compassion for those of us suffering with chronic illness and conditions. I do say suffering, as ailments truly inflict the mind, body and spirit. There is definitely a suffering period. Though, the suffering doesn’t have to remain, at least not in the mind and spirit, and sometimes, with those two freed, the physical body can breathe easier, in turn.

I saw a poster yesterday about freedom being found in the moment we accept things as they are. I have found this to be true. It is far easier, and far less work, to let go and go with the flow of whatever is happening to me, then to be in constant battle of wanting something to be different than it is. In accepting I am where I am and things are as they are, I free up energy to ultimately heal and regenerate to a state of equilibrium.

I accept I am where I am. Where I am might not be what society dictates as ‘ideal.’ Where I am might not be representative of what my mind has latched onto as ‘ideal.’ Where I am might not be what others would claim as comfortable or easy. But that does not mean I cannot be where I am in total freedom and submission to the process. That does not mean that I cannot claim this experience as ideal; for in the act of choosing this process to be ideal, I am simultaneously recognizing that cause and circumstance do not hold the power to dictate my own inner peace.

I can be exactly where I am, experiencing exactly what I am experiencing, and find this comfort and ease. I proclaim it so.

I choose not to live in the past mourning the activities I was once able to do. Nor do I choose imaginings of what could be or what I could be losing. In actuality I am losing nothing. In embracing this change and transition, I am gaining everything. I am gaining opportunity, open-heart, and open-mind. I am surrendering to what will be. I am surrendering to being.

I just am. I am right here. I am reformed again and again, continually transformed from one ‘thing’ to another. I am the same water molecule in the stream, the ocean, the cloud, the air. No matter the manifestation of my physical form: I am the same. I am movement. I am existence. I am part of the collective ocean. There is no way to detect where a wave begins or ends. The wave is the ocean. I am a manifestation of the whole. And in being a part of the whole, I am already in completion.

I find solace in the fact that I have been through challenge after challenge and always chosen to shine brighter. I acknowledge my divine inner strength.
I have been reformed continually. This isn’t something I have chosen or sought after, but something that is my existence.

Nothing has ever been easy. Nothing has ever been simple, either. But who is to define easy and simple? It’s all, like the rest, a matter of perspective—sensory input, society, environment, biological make up, scaffolding off conclusions, energetic influences, and so on. Events are not good nor bad. What is happening to my body is nothing to be feared. And in truth, nothing is happening to my body. My physical form, as a collective whole, much like the pond, is working in unity to regain balance and function at optimal level.

My body is not my enemy. What is happening to me is not my enemy. The unknown is not my enemy, either. As life is a constant unknown. Any truth I think I have about the next moment is illusion. And any truths I have gathered from the past, illusion two-fold.

I have peace in the fact that I have truly lived. In reviewing feasible ‘future’ avenues of my life course, I can see that if per chance this is the so called ‘end’ of life or ‘end’ of full-mobility, that indeed I have already led a very authentic, love-filled life. I have no regrets. I have left nothing undone. I have been true to my calling, true to my self, and true to my soul. I have embraced life fully, and continue to do so.

I have been to doctors and healers. It seems when one mystery remains unsolved and turns dormant, another mystery appears. I seem to take on ailment after ailment, each wearing a different mask and speaking with a different voice. They are my teachers. I see this. Even as they are illusion, manifested purely by my body re-shifting and seeking equilibrium; I can see these manmade conditions as a force that reveals parts of self. I can choose to make this experience for the betterment of my soul. I can choose again and again to be a student.

I can choose to make every experience anything I wish.

There is true power here.

Wherein I might have very limited access to dictate how my body reacts at this singular moment, I have full opportunity to choose how my spirit reacts. I have true ability to decide to use any of my perceived suffering as a benefit for the all. I can embrace the rest that are suffering and hold them with me, and we together can move as the wave. We together can be the ocean. Much less afraid, and much more joined in hope. Encircled in union, here is where I find the deepest solace of soul.

As I break upon the shore, so you break, endless beauty, rising and falling, again and again.

In Peace ~
Sam

My Healing Mantra

I open my spirit fully in the understanding that all people associated with my healing process are able to assist me. I open my spirit fully in the understanding that I, in my being a part of the collective whole, am able to be at a state of equilibrium and balance of body, mind, and spirit. I recognize that I am experiencing life in fullness and that everything is unfolding as an integral part of the natural flow of nature. I acknowledge the wisdom of nature and the wisdom of my body. I recognize that all possibilities are ever present in this incredible universe. I accept that the spiritual laws of the universe support and love me unconditionally. I accept that all prayers are perfect in their expression and accept all beneficial energy, thoughts and prayers provided to me from loved ones. I am not distracted by the illusion so named fear. I claim my complete healing at this moment and extend this proclamation and understanding to all other beings in need of complete healing. I give thanks to this and to the ALL of us.

(Thank you Pat. F for inspiring me with your light.)

image_1354549673911353

(A photo taken about a year ago, that I believe shows an element of vulnerability and uncertainty.)

436: Lessons Learned: What Ails Me

pinit super power

I have been depleted for two weeks, utterly exhausted, in pain, and unable to do much of anything, beyond a few simple errands. But that’s okay.

My life is a process. I am a process. And I firmly believe, despite my intense moments of pure panic and doomsday fear of my singular obliteration, that all is unfolding as it is meant to be.

I have had a lot of time to think, and over-think.

The thing is, with so much time to think, my mind tends to go into overdrive. I try to find all types of creative ways to preoccupy my brain, but it does its thing regardless. I sketched, I wrote poetry, I wrote a post or two (I think), I discovered how to make posters with my original photography and quotes, I watched a bunch of movies, or at least the first thirty-minutes of a lot of movies. I had a hard time focusing. My body wanted to move—to walk, to get out, to accomplish something, part of my body at least.

I got rather forlorn and lost in myself. Biologically this is caused, I gather, from the fluctuating hormones from PMDD. Physically, I hurt from what is most likely the result of my childish (as in spanking it) short term memory, in which I forget I have various muscle ‘conditions’ and quite frankly act like a dang super athletic hero, when I ought be seriously sitting on the sidelines.

I tend to forget I have limitations. Seems to be my area of expertise: overlooking limitations.

And… when it comes to my body, it’s not advantageous to overlook feasible limitations.

I have to learn to listen to this part of me, and I am finding I am a wee bit stubborn.

I keep thinking something will change. That if I just look hard enough, try hard enough, and just BE hard enough, (in that place of letting-go-zen-di-ness), that I will transform. That this physical pain will dismiss itself, and I can run and leap and charge forward like a little girl reborn, without repercussions.

The truth is: It’s time to let go of who I want to be and time to embrace who I am.

I am disabled.

I have had free parking (courtesy of the blue handicap plaque) for four years now. I have been unable to work more than part time for 12 years now. I have scoured literature on every disease, affliction, and illness known to man, and though I have developed practical theories on why I am the way I am, in regards to my pain ailments, I have not solved anything. Today, after thousands and thousands of research hours, and attempts at various regiments, restrictions, and so on, I am no closer to discovering an avenue of reprieve, than I was over a decade ago.

Deep breath.

I am coming to grips with this today. I am mourning. I am realizing that it is really time to throw in the towel. I can choose to spend my next decade focusing on a cure and an explanation, or I can choose to focus on the life I do have. I am not giving in. Not in the least. And I can’t promise I am giving the search up, but I do know that I am shedding attachment. And discarding of some lie I have enchanted my spirit with that preaches: I am not enough.

I am enough. I am not my pain. I am not my condition. I am not anything that has a name or label. I can’t be defined. And I am not inadequate, flawed, made wrong, or damaged. I just AM. I want to drill that into me. I want to tell myself again and again I just AM.

I have had enough. Enough tears. Enough struggles. Enough puzzle solving. In all my efforts, that I know aren’t wasted, but definitely over-drawn, I have collected more and more diagnosis, theories, and questions than a singular being ever needs in one life time. And all for what? To find out I am at square one, back on the couch, unable to proceed with a ‘normal’ life.

This is my normal.

I need to digest that like chocolate. I need to let it melt into my mouth—melt into me.

I need to hear it. I need to accept that I am okay with where I am at and to stop fighting. I have fought my entire life over one thing or another, trying to make better, to find the escape, to find the peace, to find the remedy.

My sickness, or ailment, of phantom quest, whatever I choose to call it, is a symbolic representation of my spiritual hunger, that need I have for answers and truth.

I thought I had let go enough to accept the flow of life, to be that stream. I know I have in many areas. But my health seems to have taken over my brain-processing like a singular-minded dictator. Getting better is pretty much all I can think about. It’s all I can do. I am over powered by this innate drive to fix and solve.

And I am rebelling. It is time.

This is as good as it gets. Right now, at this very moment, for you and for me. And if I can’t be happy exactly where I am sitting, whatever my circumstances be, then life will continue to be a rollercoaster.

Oh, how I want to blame the fixers of the world. Try this. Try that. Do this, it helped me. Have you done this?

Oh, how I want to blame the complainers of the world. Always me. Poor me. That’s me, too. It’s so terrible. I wish I was dead.

Oh, how I want to blame the proclaimers of the world. Just change your energetic vibration. Just visualize your reality. Create yourself in wholeness. Illness is illusion.

Oh, how I want to blame the coaches of the world. Just be strong. Life could be so much harder. You have so much to be thankful for. It’s not that bad. Toughen up, girly.

Oh, how I want to blame God. Why did you do this to me, Lord? Why me? Should I be better? Should I try harder? Is this punishment? Is this my fault?

Oh, how I want to blame the past me. Karma. It must be karma. Come to kick me in the butt. I must have done something right. I mean I have had a lot of accomplishments and love in life. But man, I must have really screwed up somewhere.

Oh, how I want to blame the concept of normal. Why can’t I be like her? Does she understand how hard this is? She takes her health for granted? She has no idea what suffering is?

Oh, how I want to blame the invisibility. No one can see this pain. No one can understand. I am so alone and isolated, forlorn, forgotten, un-important and lost.

Oh, how I want to blame everything and everyone, but me.

I have a choice today. I can join anyone I am blaming. I can blame them or become them (minus God) or I can start to be ME.

I can start relishing life for what I can do, and not blaming life for what I cannot do.

I can begin by pointing the finger at self, and then softly point the finger away to a space of emptiness. For no one and nothing is to blame. And just as there is no blame, there is no hidden promise of discovery to what ails me. What ails me cannot be relieved through attachment. Just as in my spiritual quest, I understand what ails me can only be relieved through letting go.

So today, I am letting go.

I am releasing this clinging-need to make myself whole and healed. I am accepting I already am whole and healed. I am accepting that the latest advice, tip, or cure isn’t for me. Nothing is out there. And if it is, this nothing, this something morphed from nothing, will find me when I am ready. I have to trust in the higher plan. In the course. In the miracle. I have to believe that this is as good as it gets, and be happy in this moment. For life is only this moment.

sam's hair

427: Eating Disorders and Females with Aspergers

Recently there was study released that linked females with Asperger’s Syndrome to eating disorders, specifically anorexia.

The researchers are making conclusions that the eating disorder could be a result of the Aspergerian’s tendency to fixate on one subject or thing; and in the case of anorexia or other eating conditions, this one subject or thing would be food or weight, or a variant of the two. I understand this, and the conclusions makes sense. However, I think there is a lot more to it.

Gathering a selection of females with Aspergers and asking them direct questions and allowing the participants to elaborate on their experience, might deem worthy and productive. There is much to gain in looking at the person who has the condition when searching for answers. But there is far more to gain in talking to the person and asking the female to share. We have a lot to offer. And so many times it is a male without Aspergers, and without an eating disorder, constructing these studies. It seems ridiculous to me. How much better for a female, who understands the gender experience, who is a person with Aspergers, and has an eating disorder, to be the person evaluating and determining results of a study about females with Aspergers and eating disorders. Wouldn’t she be much more able to ask the deeper questions? Much more able to interpret the responses and understand what was happening?

There are layers and layers of complexities that the mainstream evaluator and researcher are going to overlook. Not because they don’t have the wherewithal or wits about them, but because having Aspergers isn’t something you can begin to understand unless you have Aspergers. It’s not like having a mild disease where a section of your body responds differently. Having Aspergers is like having an entirely different system of functioning, processing, viewing, and seeing the world. All the senses are affected. All the ways in which the brain digests information is somewhat skewed—not wrong, or even right, but just different. There really isn’t anything simple about Aspergers and thusly no simple conclusions ought to be reached from any study.

Biologically there are differences from the typical person. We are affected by our guts, our skin, our thoughts, and a lot more. Theories abound about variant enzymes and the like. How we process hormones and chemicals, even how food affects our system is questionable. With so much going on internally beneath the surface that most people cannot figure out or understand, and with so much still unknown, it is impossible to accurately point to a singular cause of any behavior at this point. To conclude an action is based on one aspect of Asperger’s Syndrome is not accurate. The complexity of Aspergers is like a ball of twine. One thread affects the whole. The weight, the design, the outline, the movement, the appearance—each string pulled causes an alternate reaction.

Who is to say that food is not the culprit and that food causes the exact disorder that is being blamed on the Aspergergerian’s tendency for fixation. Perhaps the food itself triggers a chemical reaction in the brain that causes interior upset, either biochemical, physical, or psychological. Case in point being gluten which affects many on the spectrum, causing rapid thoughts, depression, or a false type of high—purely chemical. And if a child were to feel those extremes when eating gluten, then could she not then want to discard of the food, to instinctually force the food out of her.

That is just an example, and by no means suggestive of a theory or even grounds for an eating disorder. It is merely a case in point.

Food definitely affects my health, not by my own doing but from my chemical makeup. Certain foods make me very sick and off center, especially genetically modified foods and products with chemicals, preservatives, and other ‘unnatural’ substances. Certain foods cause inflammation of my body and increase my pain, particularly sugar, dairy products and various white flour products. I bloat up from gluten and sometimes get scary thoughts after eating wheat. Wheat seems to put me in a depressive state quite easily or causes me to over-analyze and loop in thought. I also crave wheat at times and cannot get enough of it.

Often after I eat too much of a food that doesn’t feel good for me, I might spend the next day barely eating. This is a way I cleanse myself and try to purge out the poisons inside of me. I then become fixated.

But not on the food itself or my weight but on the ‘rules of food.’

Everything I have been taught and taken in via reading, word-of-mouth, and documentaries reels through me like an old movie film shooting cross my brain. I have a dictionary of food rules in my head. I know what is bad for me and what is not. The problem is that most of the foods that are available are not good for me. The problem then becomes extreme in my mind. I know the dangers of many foods and I know the aftermath I feel. However I live in a world where to fit in and to do ‘normal’ things, I can’t eat like I think I need to eat: unless I have a lot of money, energy, and time to prep myself healthy meals. In addition, the foods I know are ‘good’ for me, e.g., organic veggies, are often lacking the flavor and texture I have been brought up to believe is best and popular and yummy. Not to mention the food industry that spends billions just to make sure what I am eating (that is bad for me) is addictive, appealing, and leaves me craving more.

There are so many contradictions in food that I become confused. Soy as an example is disputed left and right as a trigger for estrogen. I have terrible endometriosis and PMDD, eating just a bit of soy makes me worry how I have upset my system and what the repercussions might be. Wheat is an obvious trigger, but at times, out with friends or family, the wheat dish is so appealing that I feel I am depriving myself of luxury and joy. It has been engrained and engraved in my head from this society that food is a treat, a well-deserved treat. And my mind plays a ping-pong game of ‘you deserve this’ and ‘you will regret’ this. Yes, I am fixated on the thoughts of what I will eat, but not because I choose food as a fixation but because of the repercussions I often face eating food and of the mixed messages in my mind.

I know the GMO foods are dangerous. I know they are legally registered as poison and not food because of the chemical similar to Roundup, and other disease-like elements, found in the seed of the plant. I know that many a people are having reactions, and many countries are banning the products because of health and farming interests. I know that corn is a main culprit. Thusly I avoid corn. I feel tired and fatigued when I typically eat grains anyhow, kind of a hypoglycemic reaction. So many foods have corn by products, corn syrup being an obvious one. Mexican food, my favorite, is loaded with corn, wheat, and dairy. If I go out to eat my options are so limited, I might get depressed. Or I might just tell myself ‘screw it’ and eat what I want. The next day or two, I pay the price. I am so sensitive that my pain disorders react. I have been diagnoses with hyper-joint-mobility syndrome, fibromyalgia, chronic fatigue, and more. Foods directly affect how I feel.

I might spend all day not eating and just having water and herbal tea. I might not eat until four or five in the afternoon because I know as soon as I eat, I will more likely than not have a reaction. I rarely can eat and not feel heavy, bloated, muscle pain and fatigue. It is easier not to eat. Is this avoidance an eating disorder? Or is this behavior a desperation and a means of trying to avoid pain? If a boy was whipped every time he ate, so he refused to eat until starved, is that a disorder, or is that survival?

Of course, in my mind, at times there seems to be a definite means of controlling an otherwise uncontrollable world through diet and exercise. I know that. When my life is essentially overwhelming, as it feels most days, I might fixate on the scale and my weight. Mostly because the rest of the world is entirely unpredictable, full of treachery, deceit and lies. Yes, there are many, many good people and wonderful things about the world, but there are also the continual reminders of the unpredictability of human nature and the deceit of leaders and government. I internalize deceit at a deep level in which I neither understand the drive to deceive nor the person who deceives. My world is often muddled in the mysteries of people and their ways. And sometimes, a number brings me comfort and peace. A familiarity I can trust and control. Sometimes this number is on the scale.

I have been watching my weight recently, as I gained poundage since stopping a low dose thyroid pill that put me into a hyper-thyroid state (hair fell out, rapid heartbeat, rapid thoughts, insomnia, cystic acne, etc.) The pill wasn’t supposed to affect me that way, supposed to be super safe, and my thyroid numbers never got that low, but my system is so sensitive that anything introduced, particularly a hormone, directly causes extreme side effects. Two days after stopping the pill I returned to normal conditions. During the time I was taking the pill I was getting a sore throat two days before my period for seven months. The sore throat often turned into a cold. I was sick almost every month on the thyroid hormone pill. It altered my progesterone levels that caused a reaction to my tongue and the way I breathed at night, which caused the sore throat, which caused the illness. No doctor could tell me what was going on. I had to research. Was I fixated on that too? Or was I trying to solve a puzzle so I could stop being sick? I don’t know.

I am back to watching my weight, because my thyroid numbers are just on the high-normal range. This increases my pain as well. For some reason being in a slightly hyper-thyroid state decreased my physical pain but triggered a bunch of other intolerable symptoms. Now my pain feels two-fold, as if some days my entire body has been dropped off a building. I ache. I throb. I burn. I tingle. Nothing I can’t tolerate, as I have been enduring pain for thirteen years, but something I still hope to diminish.

Less weight equals less pain for me. But it is impossible to lose weight without drastically reducing my calorie intake. If I drastically reduce my calorie intake in an attempt to lose weight, so I can decrease my pain, is that an eating disorder? If I think about food all day, because so much of it seems poisonous and causes me pain, is that a fixation? Or is that me being cautious and over-aware because I have been hurt so much in the past? Is it desperation? Or is it just the way it is, because I know not what else to do?

With all the chemical imbalances and ‘dangerous’ foods aside, weight itself does bother me. Faces change constantly for me. My body image changes constantly. When I am at a healthy thin weight, I know what to expect. I know I won’t find the imperfections and flaws that my mind so easily sees. I am a detail-hunter. I find the slightest things that are off center or not right in all things I see. Not that I am judging, only that I am carefully observing and figuring out. My mind is constantly solving puzzles. Everything I take in is sifted and categorized and made to fit my past knowing and experience. I see things so intensely and feel things so intensely that any normalcy, anything that stays the same, anything that isn’t a surprise, new, or different, is a haven—an inner sanctuary in where I choose to bask.

When I am skinny and look the same weight everyday then there aren’t a thousand messages in the back of my mind. I don’t have a tape of old messages from everything I have previously taken in and learned. I don’t here all the contradictions in my mind that the world has fed me. All the contradictory studies. All the falsehoods. All the lies.

“Belly fat is good going into menopause to help from getting bone loss. Belly fat indicates higher levels of cancer.”

And I don’t have the complications of getting dressed. When I gain a little weight most clothes don’t fit. I don’t keep ‘fat’ clothes because I clean out my closet regularly and can no longer wear certain clothes for reasons I don’t understand. Sometimes it is a memory the clothes evoke, a texture, the color, the cut, the way the clothes pinch at me, scratch me, pull on me, weigh me down. Maybe I saw someone else wearing the same shirt, and now I can’t wear that shirt because that person’s image is now with me. Maybe the clothes, I think, make me look odd, untidy, sloppy, frumpy, slutty, loose, etc. It is common in my house for me to ask my husband: “Does this look slutty.” I ask because I was judged so much as a teenager by my body and my clothes that I still here the echoes of my peers. I can’t tell what fits right or what looks right. Things shift for me. I usually dressed my babies in clothes too big. Things hung off the shoulders; items didn’t match; patterns clashed. But I honestly couldn’t tell. I don’t understand fashion trends and I don’t follow them. And I don’t understand why people do. So my wardrobe is limited from what I have tossed out because I no longer feel comfortable wearing and from things I can’t get myself to wear a particular day for some reason or another. My wardrobe is limited because I am not able to wear certain items for weeks or months at a time. I get stuck in my head something someone said or something I read or saw. Like when I was watching a movie that had a 1980’s flashback and the females both wore their hair like me. Two different styles, both the way I do up my hair now, in this day and age. I thought hard about how maybe I am not supposed to wear that hair style anymore, particularly as the women were portrayed as backwoods idiots. Same thing goes with clothes. I am constantly matching and connecting points in my head. So if an outfit for some reason doesn’t seem like I should be wearing it, I don’t.

When I add weight to the equation, everything comes out scrambled and even more complicated. I start wearing things I don’t particularly like, only so I can hide the spare tire. I go out in public and am continually worried about the small amount of excess fat showing. Because to me, (I have taught myself through media exposure),fat is bad. Even the tiniest imperfection is terrible. I have been brainwashed into thinking I am not good enough unless I am good enough by the big business standard. I know it’s not true. And so the logical part of me and spiritual part of me start debating everywhere we look. Sensing my own fat causes me to spin into loops about the corruption of America and the terrible untruths women have been fed since birth. I start to look for overweight women and justify how lovely they are, and that if I was a man looking at a beautiful woman that the small bit of fat wouldn’t bother me. And that a face and heart is what matters. And then I spin back to my body. Am I good enough? Am I enough? And then I go back through all the spiritual books I have read, all the mantras, the ‘truths’ I embrace at times. And I get all twisted inside; all because a tiny bit of flab isn’t hidden by my clothes. The same goes for other parts of my body. My own cleavage is a major issue. How much to hide. How much is safe to share. What I know of the stereotypes of men and what cleavage represents. All of it confuses me. All thoughts that mostly go back to social norms and expectations; things that make no sense to me.

If I am stressing about a little fat around my waste and don’t eat a lot the next day, is that a fixation? Or is that me trying to stop the constant bombardment of negative messages that fill me when I am not fulfilling a role that society has indoctrinated upon me? Isn’t it society doing this to me, to us? The poisonous foods? The restrictions on how I should look and be? The mixed messages? Am I not just extremely sensitive to the contradictions of the world?

I haven’t eaten meat or poultry since 1984. I stopped eating lamb at age four and pork at age twelve. The animal cruelty, the suffering, the injustice—I saw that all too, from early on.

I don’t think that eating disorders are necessarily a result of a fixation. I think eating disorders are a result of the unjust and contradictory, money-hungry world we live in. I think eating disorders are an attempt to feel safe in a very unsafe world. A way to make order out of caous and unpredictability.

A way to gain back some of the control that has been taken from us when we were taught to trust liars and schemers and not our true heart and soul. I think eating disorders are a symptom of the world gone wrong and not of my brain gone wrong. Eating disorders aren’t a simple puzzle to solve, especially when considering females with Asperger’s Syndrome. There are so many other factors playing out beneath the surface. So many thoughts and deep complexities that the experts haven’t even begun to discover.

And to claim suddently, “Hey, did you know females with Aspergers are more likely to have eating disorders,” seems oddballishyly peculiar to me. As if we couldn’t have told them that from the start.

(I am not an expert on eating disorders. I have never been diagnosed or sought help for an eating disorder. I share to raise awareness of the complexities of food and weight in females with Asperger’s. I realize there are many types of eating disorders, some much more extreme and serious than my story. This is just one story and does not represent the collective whole. Also the ongoing research by others will help others detect Asperger’s Syndrome in some girls with eating disorders, and that’s good. To find answers.)

411: Money in the Meter

On my way to see the doctor this afternoon, I left a message on a complete stranger’s voicemail. Someone I have never seen before. Never have known, and likely will never encounter.

I held on to that stranger while I sat alone at the doctor’s office.

Aspergers was on my medical chart, listed under conditions.

I have this tongue thing, like a gag-reflex tongue I suppose, and a long tongue at that, and my tongue NEVER cooperates, especially with dental x-rays and the like. It truly has a mind of its own. No kidding. As it happened, the doctor lost his patience with me. He tried all ways to get a culture of the white patch at the back of my throat with this long Q-tip thing. But my tongue kept blocking the pokey stick like it was sparring. I was embarrassed, to say the least.

The doctor threw the stick away, and huffed. Quietly and professionally, but the frustration was obvious. Me, being my nervous giggly self, offered: “Are there any tricks? Something you can teach me to help?”

I think he was fed up with the tips he’d already offered throughout the procedure. He kind of snapped, “Tricks? No, I don’t have any tricks.” I felt all of twelve.

My demeanor makes me come across as a stupid-head sometimes: the posture, the anxious laughter, the inflection of my voice. And I fumble with words as my voice squeaks in all of its youngness. You’d think I had the IQ of a horsefly. My un-brushed hair and sloppy attire of the day, likely didn’t help to set the mood of ‘got-it-together-woman.’ I was wishing at this point I’d dressed up for the doctor, at least had my hair up and not all straggly in my face.

Still seeming a bit perturbed, the doc summed up I likely didn’t have strep anyhow. The chances were very unlikely: no fever, no swollen glands, etc. But I knew I was feeling super lousy; I knew when I’d flushed bright red earlier in the day, I’d had a fever, and I knew I couldn’t risk getting sicker. I had an important trip planned and my husband was out of town. I had to know. The anxiety grew.

He left the room without telling me anything except to explain it was basically a sore throat and to gargle. I opened the door and asked a nurse if I could go. I don’t think the doctor appreciated that. He seemed bothered when he explained the procedure of when I could exit.

At this point my resources of zen-being and lovey-dovey-ness, were all but empty. I had a lot on my plate and felt like crap. I don’t remember the particulars, but somehow the subject came up again of tricks. And the doctor said, very bluntly: “I know tricks for kids. I teach kids tricks. I don’t teach adults tricks. Adults should know.”

Man, that wasn’t nice. I swallowed and felt my little heart race. I retorted, “I have to disagree. I have autism and my son has autism. And sometimes adults need tricks too, because our bodies work differently.” He kind of gave me a glance, and that kind of made me feel worse.

He then said, in a demeaning tone, “Have you ever heard of the phrase: Where there’s a will there’s a way?”

He asked if I wanted to try again.

I said, “Yes,” already doubting myself, coaching myself with the silent you can do it, and feeling terribly inadequate. As the doctor prepared another culture, I offered kindly, “The reason I want to rule this out and take care of it right away is because I have to drive in a few days a long distance.”

The doctor approached with the long thing. This time after several more minutes of ‘ahhhhs’ and ‘look up at the corner’ and ‘no stick your tongue back in your mouth’ and much more, the doctor sighed saying he’d likely gotten something, hopefully.

Again the sense of not enough.

Somewhere in the time line after something or another, that I can’t recall now, I lost my equilibrium. I don’t know if it was one final shrug or sigh on his part, or my urge to speak my mind. But I kind of unraveled in a calm but definitely I’ve had enough of this way.

Exhausted, I asked: “Do you not know what Aspergers means and how it affects people?”

He responded, “No.”

I said, “I write for a psychology journal; would you like me to leave a copy at the desk, so you can learn?”

He kind of looked either perplexed or bothered or preoccupied—I couldn’t tell. He said something that indicated agreement.

I said, “You know you were kind of rude to me. You didn’t treat me well.”

His back was still mostly to me, as he stared down the culture. I was thinking this guy was definitely undiagnosed Aspie. I explained, “You sounded like you were belittling me.” I was on a roll then, like when you finally get the ketchup in the bottle unstuck, after that final hiccupping glob, and the rest of the red comes pouring out swiftly.

I continued, “When you talked about not having to teach adults tricks. And you asked me if I knew what Where there’s a will, there’s a way meant. You sounded like you were mocking. And who doesn’t know what that means? You insulted my intelligence. Did you have a bad day or something? I mean the way you were…oh I don’t know what you were. You just weren’t nice.”

I felt a bit like I was in ‘Gone with the Wind,’ in an important scene. Only I was in old blue jeans and wearing socks with my sandals.

He mumbled, “Well, I’ve never had an adult who could not do a culture.”

I said, with a rising voice, “Well do you think I was doing it on purpose?”

He probably wasn’t too keen on being in a room with me at this point. Poor man. I should have given him my husband’s number, so they could commiserate.

The doctor left.

I had some time to wiggle and squirm and text a friend of my experience.

When the doc returned, indeed it was strep throat. He handed me some stick and started to explain about the red line. I said, “It looks like a pregnancy stick.” Now he was nice. He was smiling. He was more relaxed. He was finally sitting and looking at me. He seemed like a different person. He actually seemed genuine and concerned. I could have sat with this person for hours. He was much changed. I sat there hunched with a blank stare contemplating the reasons for his demeanor.

I was thinking: 1) He realizes I wasn’t a moron because I told him I write for a magazine 2) He is feeling kind of wrong for assuming I wasn’t sick 3) He is realizing he was a boob 4) He has no idea what else to do but to give in 5) He thinks I am nuts 5) He is so happy I am about to leave.

As I was leaving I said, about my strep throat confirmation, “Yes, I thought so. I usually can tell stuff about myself and my health.” I imagined I would have talked more and more, if he wasn’t ushering me out the door. I was fine then. He was like my new found friend. I’d forgotten all about the rest—the stuff before he smiled. He’d been kind and that’s all I’d needed.

I reflected back to the stranger, to the voicemail message I’d left:

“I was out of sorts when you left the note because I’d just returned from the airport. I was dropping off my husband there; and now I am headed to the doctor’s because I think I have strep throat. Your random act of kindness kept me from feasibly having that ‘last straw.’ My mother-in-law died this morning. I thought you should know you made a difference.”

When I was parked downtown earlier, she had left a business card on my van’s windshield. I hadn’t seen the note until an hour later, as I was getting into the car for the drive to the urgent care center. She’d handwritten on the back of the card: I wanted to let you know, I saved you from an $18 parking ticket.

She’d put money in the meter.

366: The Stream

Photo on 4-8-13 at 4.33 PM

Yesterday a dear woman called me. She is a well-known healer in our community. She called to let me know that the (first and only) email I sent her resonated with healing energy; that my words were at a healing, soothing vibration. I have been told by others who are viewing my words that various experiences are induced. For me this is cause for celebration, not because of my ability or outcome, as I do not believe this is from this ‘me;’ this is cause for celebration because I was told through various seers and through repeated visions that indeed the words I scribe would carry a healing vibration, that in actuality the energy attached and resonated by the words was the pure substance of healing.

Though the words are not empty, they were not meant and created to be digested and deduced; they exist more as the carrier of the underlying message which is infinite and currently unattainable through the deciphering of symbolic letters alone. Underlying the words is a resource of rivers and streams, and outmost pouring of diverse and integrated messages, less tangled and superimposed than drawn out of deep souls and splattered across canvas of other.

The seeker will see this, and the rest will feel this, I am told.

And so in hearing from this adored healer, whom called me yesterday, I was somewhat validated in my journey and in the promises of my angels. As the more people that come forward and recognize the healing energy in the words I scribe, the more I am recognizing and able to acknowledge the truth of my angels’ promise.

It is not that I doubted them in a deep sense, but that I am human in form, and being so readily told messages since my youth, I had reason to doubt, if only to be able to function and exist in this world that I have been told is non-functioning in the domain of angels.

Though I believe in my angels and listen to my angels, I still carry the measure of doubt equivalent to the splintered-paw that keeps whispering in nonsensical demise: Your angels are not real.

And here is where I falter and fall, tumble down the path of piety and self-serving, and become miserable onto myself, lost, isolated and alone. For when I dismiss the divine within and without, the pain comes in all forms.

For awhile I walked the path of reason I’d been told, and continually haulted the sensations from divine, whether this be the dreams, the visions, the constant knowings, or the vibrations moving throughout and within my very being. However, when I gave pause to the illusion of creation, and attempted to grasp on to this false belief that I (am) was nothing more than the flesh and beating heart of man, then I was made victim to my own imaging, an imaging far worse than the persecution inflamed upon me by my fellow man. The deleting of the world beyond self and welcoming of the one and the only one I be, in essence wiped out the all of me.

In accepting, or more so struggling to accept I was but one, and none other existed, I stifled and suffocated my very soul. In so doing I became the fire of confusion, isolation and woe, and the pains surfaced on all levels, from dynamic psychological consequences to physical manifestations of torture.

I understand now that to allow the spirt to flow through me is to allow for the ultimate of healings of whole; in other words, healing what is already healed and returning to the wholeness granted to me by eternity and thoughts there of, even beyond thought.

In recognizing this “un-self,” I chose much courage in the start, or first step, whenever that be, as each step led to another, and multiple paths were driven forward at once. In journeying, I forged through self and illusion of self, to accept what was once perceived illusion of spirit. In accepting spirit instantaneously and without purposeful intention, I was to delete self. This in truth was never a scary process but often confusing and mixed with the absence of seeing the outcome, which will not and does not exist.

In stepping out, I was made to, by no choice of self or another, but by circumstance and perception of onlooker alone, to be someone that will not be recognized to some. This is a variable odd place to be, without this self and living somewhat as observer of a walking vessel that reflects the personality of the onlooker outside of self, whilst taking bites of visions, trascribing them thusly, and watching from a place beneath and beyond and above vessel all at once, and accepting the potential silliness of said actions, while knowing the truth heals not one but many.

Invariably I waver to speak, if to speak at all, to breathe, if to breathe at all, as so much moves through me, I become fisherman wondering which species to net, and which to bring up to the light of day from the depths below. For the only sediment of worry now exists in releasing thought into word and wondering if word enough be. For what of the rest left shifting and drifting merrily in the stream of consciousness?

Here is my dilemma, in having moved beyond the pretense of intention of what another thinks of me and views my actions readily with, this self they so frequently perceive as one, then thusly what do I bring forward that is fish enough? How can I the climber of no mountain, the fisher of no game, in seeing this endless cycle of illusion bring forth anything beyond the building blocks beyond pure form. How can I bring up the fish I see that stretch out as rainbows to eternity, when once out of water the breathing stops? How can I as fool made aware, preach as man made whole?

I am stuck here in the flowing rivers of no-time breathing in wonderment in the waters of goodness and envisioning a thousand upon a thousand streams, yet know not where I stand or whom views. And it is in this unknowing I am divided between you and me, longing without longing, recognizing without recognizing, that where we stand is one in the same, sister upon sister, brother upon brother, moving forth to a destination non-existing, in a stream of imaginings.

And so I write, not to form the words of illusion upon illusion, but to bring up the streams itself, the first stream, the second, and the endless circle of more, pouring the waters through. And the fish remain behind in the waters abundant, as the fish cannot breathe here. For invisible cannot breathe in the substance of illusional form.

~ Sam

Below is what I scribed in the winter of 2011. I received this in vision, a combination of images, and what feels like whispers, just as I received most of the prose above on this page.

Balance
Balance is foremost a way of perceiving. Each person will perceive a balanced life differently than the other. In examining the aspects of “balance,” it is important to keep in mind that we are not in the position to judge or evaluate who is balanced and who is not balanced. Every one is balanced to the degree necessary to fulfill their life’s intention. Each person will continually rebalance and reacquaint him or herself with what they deem necessary and required in their lives.

Balance is perceived by the society one lives in. The timeline affects balance, as does environmental climate and universal climate. In looking at balance for an individual, first and foremost determine where there is a hole, or missing piece. They, the person, will seem heavy and hearty, literally “heart-filled” in many areas surrounding them; however, with close examination, and focused attention, there will be apparent gaps or holes. This is where the person is “off balance.”

Before pointing out a discrepancy in balance, the person must grant permission to be evaluated, and question or ask for assistance. To simply approach someone and say: “You are off balance” or the like, is dutifully shameful, and will harm more than do good. There must first be a period of comfort and trust built, and the seeker must be seeking. This is worth noting.

The holes can be felt in many different ways by many different people. There is no right or wrong way in detecting what we will call “weakness” in the balance of a person. For we are truly discussing the person and not the person’s life—there is no life without the person.

In seeing the holes, there will be an obvious lack. A person can turn him or herself in enough to see this lacking. It will resemble a pain in the body, a pain in the mind, a pain in emotion, or pain elsewhere. This hole will be evident in relationships especially, and is most easily detected out in the open in interacting with others. Often, individuals “lacking” much balance will spend less and less time out in the open or develop a way of masking their authentic or true self.

In order to determine these holes, time in the open, out of isolation is necessary. Here they will be noticeable. With the exception of very few humans, each person that walks the earth plane has holes and is “lacking.” The word “lacking” is not to say there is something wrong or incorrect. There isn’t even something missing. The hole of lacking is what is waiting to be filled. This can be perceived as a crystal bowl, clean, unbreakable, and eternally new—the hole created by the crystal bowl is this “lacking” or space to be filled. To say that something is missing would be incorrect. This would be like saying the wooden hole that waits for the peg is missing something, or that the baby bird in the nest with its beak open for food is missing something. True, the baby is hungry, but nothing was lost, misplaced, forgotten, or overlooked—the bird is waiting to be filled. In this way you can see the “lacking” or the need for complete balance, as an innocent being waiting to be filled. What good would it do to point to the bird and say: “Birdie, you are missing food?” This would prove nothing. This would help nothing. Better to look at the bird and say: “Birdie you look as if you are hungry. Would you like some food?” If we point, the bird doesn’t understand and only becomes more hungry. This is how the process works for people. We are each lacking; thus, we are each missing. We have holes to be filled, and we point to the holes and say: “Your hole is this; your hole is that.” Instead we must see the lacking and ask to fill the lacking.

A person with no friends—become his friend. A person with no healthy food—give him healthy food. A person with no time for movement of body—walk beside him. A person with no time for prayer and meditation—meditate beside him. In this way, in the seeing the lacking and then feeding the lacking we will grow. In this way of pointing to the lacking, perceiving it as missing, and then doing nothing—in this way we remain stagnant. Many, many words have been written about humans’ deficits, behavioral wrongs, intellectual debates, defeatism, work ethic, and more. Little, little words have been written about feeding one another. Yet, if you look at all the great works of the world, each considered Holy by the masses, the theme of “giving” remains steadfast. This is what must be done. This is what will be done.

So little one, when you ask: “How do I balance the life?” I say to you that first you must ask another question: “How do I feed the world?” In feeding the world, in feeding the lacking, you consequently balance your life. Two for one. One for two. So say to me next time that when you are lacking, when you are less centered, look not down into your holes, into your perceived lacking, look unto others, and feed them. In this you will remain balanced.

357: My Pain Conditions

I don’t often talk or write about my physical pain, mostly because pain does not define me as a person. Currently, I have several pain conditions. I suffer more in the winter months and do amazingly well in the summer. Sometimes I can get hit with flare ups from multiple conditions all at the same time, typically around my womanly cycle. That was this last weekend, and yes, that was basically hell.

The pain is not so intense that I require pain killers to function. In fact, I usually only take one over-the-counter pain killer (Tylenol) once or twice a month. I save those beauties for the super tough days. But the pain is always with me; it doesn’t go away.

In doing research about hyper-joint mobility syndrome (closely related to EDS, if not the same?) I discovered it is not uncommon for people with this type of condition to have extreme fatigue by mid-afternoon. That is me for certain. Each day at about four in the afternoon, I am ready to settle on the couch. If I sit, in the latter part of the day, then I will have a difficult time getting back up. Sometimes I have to move all day, e.g., standing, walking, cleaning, errands, etc. because more often than not, as soon as I wind down and take a rest, I won’t be able to move much anymore. That’s why I am prone to spend one or two days a month doing massive non-stop cleanings of the house. It’s the only way I can do housework: all or nothing. Housecleaning itself usually sets me back two to three days in intensified pain, but manageable.

When I take my three to five-mile walks, most days in the summer, and a few times a week in the winter, I am fighting through the pain. Pain in my knee joints, hips, and sometimes back. When I say, “I am taking a walk,” it means a lot more to me than just a walk. Forcing myself out the door means forcing myself through the pain.

Simple tasks, like opening a lid on a jar, bending to retrieve something from the floor, or walking up and down stairs, hurt. I don’t loosen up and feel better after stretches. Stretches actually make me feel worse. My pain feels very much like what I imagine a person would feel after he or she hiked ten miles up hill. It is an all over, generalized body-ache. Sometimes I feel like I took a huge fall or was run over by a thousand little trolls. There are also specific areas in my body that flare up, in the sense it hurts more. I don’t actually swell or get red in areas. Flare ups usually happen in my wrists, fingers, elbows, hips, spine, neck, knees, etc. I am sure I am leaving out some area, but you get the picture. The flare ups feel like a dull ache, not severely painful like a tooth ache, just painful enough that sitting here now, as I type it feels like parts of me are throbbing and/or burning.

I am thankful I can go through my days and still function. I can climb stairs with ease, despite the pain. I can clean. I can walk. I can drive. Somethings that are more jolting on my muscles are actually dangerous for me, as I never completely heal from injuries, and actually develop something similar to scar tissue where the collagen should be healing. Thusly, I still feel the three times I suffered whiplash from car accidents, the time I took a hard fall and landed on my left shoulder, and the time a glass-framed painting fell off the fireplace mantel and landed on me. Those pains won’t ever completely go away.

My children are used to seeing me on the couch. It’s what they have grown up with. What they know as familiar. It’s one of the reasons I find so much time to write. Fortunately, when I write, I can escape my body from time to time. I think my pain is one of the reasons it is hard for me to practice being in the present moment. I am fairly certain that the combination of sensory (bombardment) challenges, Post-Traumatic-Stress Syndrome, and constant pain, make it difficult for me to want to be present.

I wake up several times a night during the harder days, usually from the hip pain. I have to shift my body a bit, and then I am able to fall back to sleep. I consider myself fortunate. I fall asleep easily at a reasonable time of night and stay asleep for the most part. However, part of the reason I fall asleep is because I am utterly exhausted from doing relatively little all day. Just sitting on the couch hurts.

I maintain a fairly good disposition. As much as I hated hearing my mother repeatedly tell me that “Things could be worse,” when I was growing up, it is true, they could be. I do have some almost pain-free days. And on those days, I can truly appreciate the beauty of just being. And on my high-pain days, the longest stretch usually lasting five days, I can remind myself, or ask my husband to remind me, that this too shall pass.

I don’t worry too much about the future. My pain has been pretty stable; in other words, I have felt this crappy for about fifteen years and the crappiness hasn’t increased, at least.

I know NEVER to run; even a short fast sprint to catch my dog will result in body pain for several days. A tumble or a fall might keep me down for a week. And the only “minor” surgery I ever had, a small laproscopic “scraping” for endometriosis, took me a year to heal from. It should have taken two days. And, yes, I still feel the pain there, likely scar tissue that never will heal.

I am super thankful I listened to my angels about six years ago. I was scheduled for a full hysterectomy. I had the operation date, and was already setting up childcare when I heard a distinct and audible: “No.” I can’t imagine what would have happened if I had the surgery. I don’t think I would have ever been the same. If minor surgery took me a year to heal from, what would major surgery have caused? Plus, my acupuncturist at the time, a healer I still see when I travel to California, she gently had offered: “I would not take out any part of a body unless it was a life threatening condition.” In other words: keep all your parts as long as you can.

I think sometimes I accept my pain conditions too much, to the point I practically forget. I get super down on myself for not being able to get up and go, to run out the door and go toss a ball or shoot some hoops. Like other things in life, I sometimes long to be “typical.”

Sometimes I make a sacrifice and will do something I know will cause me days of pain, like painting or roller skating, riding a roller coaster, chasing my son, or climbing hills. Sometimes the sacrifice is very much worth it!

The pain has been a gift in many ways. Like I said, I appreciate the days of less pain. And the days of almost no pain are like heaven. And I have been able to spend valuable time with my children. If I didn’t have this pain condition, I dont think I would have left my teaching job (I am disabled.), because I loved teaching and brought income home for the family. If I was still teaching, I would not have been afforded the opportunity to be a stay-at-home mom and to homeschool my middle-son with Aspergers.

Because of my experience, I have gained empathy for those in physical pain and/or with chronic fatigue. And I have gained a remarkable awareness regarding my own body and my needs.

I also am blessed with a patient husband who never complains when I am down. And I get to experience his love demonstrated through service and support. I have seen miracles, too. Like this last month, when I drove over 1600 miles, in a few days time, and experienced little to no risidule pain. I kept asking my angels to relax my body and heal me. And when I do my automatic writing, much of my pain disappears, too.

I don’t know why I live a life with physical pain, anymore than I know why I experienced a difficult childhood or why I have Aspergers. I do know that all my challenges have made me a stronger and a more loving person. I know that I am capable of extreme empathy, because in this short life I have experienced so very much. And perhaps that is my gift: how my suffering enables me to love more fully and to connect more freely.

I cannot imagine my life any different. If one day my pain goes away, I am sure I will be delighted; but in the meanwhile, I am so happy that I know how to choose contentment over victimhood. And I am thankful that I recognize my pain is not who I am.

I wrote this post because there are other people who experience pain syndromes, and I want them to know I understand. And because I wanted to share a little bit more about my journey.

I think we all have special gifts to share with the world, and that if we can turn our trials into compassion for self and others, then we have already accomplished so very much.

In closing, I believe there is a reason for my life. I believe we have each been called to service and each given the tools necessary to answer our calling. For me, one tool in particular has been the continual humbling of spirit. I thank my pain for reminding me of my fragility and humaness, and for bringing me that much closer to reliance on something higher than self.

Diagnosed with:
Fibromyalgia
Chronic Fatigue
IBS
Endometriosis
Fibroids
Hyper-joint mobility syndrome
Lyme Disease (The test has an over 60% fail rate. The test results were questionnable; the doctor based this diagnosis on ongoing symptoms. I tend to think I don’t have this, though, and my pain is a result of the above conditions.)

Self-Diagnosed:
PMDD

Perhaps I have?
Classic Ehlers-Danlos syndrome (I haven’t been diagnosed with this, but it is so similar to hyper-joint mobilitiy syndrome; though I do have most of the symptoms)