aspergers

357: My Pain Conditions

| Aspergers Girls

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)

356: Teaching the Teachers

| Aspergers Girls

I have been praying and asking for guidance regarding my future vocation and avenue of service, and the answers very much entered through slipstream full force this early morn.

At first, I was given the message (through my little knowing voice) that my husband would over-sleep his five a.m. wakeup call (alarm) and be late for work, unless I was awake to wake him up. Hmmm. That was troubling, as with my own dyspraxia/dyslexia, I had no idea how to reset my own alarm in order to wake him up, as he was sleeping in my son’s bedroom. (Long story why we were in separate rooms, but basically boils down to dinosaur snoring, if there was such a thing.) I could have retrieved my phone from upstairs I suppose, but I wasn’t awake enough to think of that. So I tossed and turned in a type of vision-state for a bit over an hour. Knowing enough I had to stay partially awake.

I was certain time stood still, as the leap between the time of four to five seemed to take the stretch of a day. During this time I was shown image upon image.

I revisited my time at the university, the place I chose to leave a little over a year ago, based on the way I was discriminated against for mentioning I had Aspergers Syndrome. I revisited it all, the whole of it—emotions, illness brought on by the stress, the mourning process, the wanting to prove my side of the event and expose the injustice, the sob-filled-telling to my therapist and her concurring I had been the victim of appalling behavior on said professor’s part, the anger stage of wanting to sue, the humiliation part of being set up in a mediation that wasn’t a mediation…and on and on.

How dare they, is what I thought, and I spun and circled in mind about pulling up the evidence—the emails from the witness who at the time of mediation froze up and remembered nothing, the notes from my therapist, even my therapist’s comment that this man had a reputation, hearsay or not, she knew of him well, the notes from the Dean’s meeting, the Dean of the department warning me not to ever bring up the word Aspergers in professional setting: “It’s not the appropriate place.”

I dug up so much old stuff: the confusion of being accepted into a Masters in Counseling program that didn’t even want to know who I was, who didn’t even want to know how my mind functioned. The confusion of being told I was creating my condition (Aspergers) and announcing to the world my son’s brain (who has Aspergers) is broken. The confusion of receiving lower marks on my papers after the mediation took place. The confusion of one professor offering unsolicited advice about me, once she found out I had Aspergers. The meltdown of my self-esteem, self-worth, and self-love that dissipated much like the wicked witch in The Wizard of Oz into a molten black. Why was it I who had to undergo such pain?

I thought back to the high marks I received as an educator. Always the highest marks. How my college classes previously, through undergraduate work to my Master’s in Education program had been a place of safety. How the professors appreciated my input and intelligence. At times how I became the exemplary “one” or the teacher’s pet. I remembered how with every endeavor I’d ever set out to do, I had excelled, even exceeded others’ expectation. And here, in the span of little over a semester, with the hearing of the word Aspergers, the others, a set whom were supposed to be my mentors, painted me with their own muted greys into something I was not and am not.

Suddenly, all of me became what they saw. Suddenly, I had lost all I had built. With one swipe they knocked the self out of me.

And as I processed through the events and corresponding pain, I began to wonder what to do with this surfacing anger. A damaging letter came to mind: “Look at what they did to me.” And I let those thoughts come readily and steadily and tear into me one by one. I bled in my bed. I bled and bled, the tears of my soul seeking vengeance.

And then, with the passing of deep ache and hollowed out chance, I let the feeling go. I let the anger purge through me and erase the fear. I let the anger dance and take flight. I let the scenarios play out. I let the other me who wished to be free escape. And this shadow side, she wept more. Her screams the own echoes of demise and lack of rescue. For she had tried so very hard at this University, where her dream of being a therapist was going to come true. She read all of the “extra” books, did all of the “extra” credit, spent countless hours, setting aside her dyslexia and dyspraxia, in hopes of impressing her professors, and hopes they would see her, see her brilliance, see her mind, see the gift she so readily wanted to share with the world. This part of her less-ego than giving spirit. See me, see me, see me! That is all she wanted. That was all she ever wanted.

In receiving her diagnosis the world made sense to her finally. She wanted to celebrate. Four-decades of not knowing made sense in a split-second. Four-decades of intense suffering realized and ended with the blink of an eye. In the mention of a word. This gem of Aspergers had saved her, had brought her home onto herself.

And in knowing this, she wanted to share. She had to share. She had to let others know. “Look, I found the key. Look!”…….

And instead I was made to think I was broken. I was wrong. I was made to be pushed back into a hole and remain uncovered. Not one professor wanted to hear, wanted to know about Aspergers. Even in the beginning of the second-semester of my group-therapy class I was warned, we as class warned: Don’t share the diagnosis stuff here.

Really? I was so beside myself, how could I share in group therapy without sharing the essential element of who I thought myself to be and how I thought myself to function.

Could they not see I wasn’t broken? Could they not see that Aspergers was not a disease, not an illness, not anything beyond the way I saw the world?

And the questions came bubbling: Why would I be hushed, unless indeed I was entirely flawed? Why would I be told I created this, unless I was entirely unaware of my own self?

So much damage done, in so little time.

Today, before the sun rose, I wept in bed, the whole of my body sweating and seeping out the poison. And I turned and turned, half in sleep and half in agony. Lessons, lessons, and more lessons.

And then the peace finally came. Right when it was time to awaken my husband, I was awoken.

The clarity seeped through me. I saw that I had detoxed the emotions. I finally released the torturous anguish. I finally set my self free and their falsehood to rest.

I awoke fully with a knowing. I knew what I was supposed to do.

I was to teach others, teach the teachers of the teachers, the educators of future counselors and psychologist, the parents, the caretakers, the women of tender-heart and soul like me. Teach them that Aspergers is nothing to be ashamed of and nothing to hide away. Teach the beauty of who we are to erase the darkness that once pushed me into hiding.

355: To the Professional

| Aspergers Girls

Take away the notepad and paper, take away the laptop, or whatever you are about to write on. I am more concerned with what you are writing and thinking than my own self.

I am uncomfortable looking at you. I don’t like your office, for one reason or another. Maybe you are messy or maybe too clean. It might smell in an offensive way or be too dark and cluttered. Then again the sunlight might be seeping through and displaying the dancing dust and pulling me in thought to germs and uncleanliness. If you cleaned, I am hoping you didn’t use toxins, and I am wondering how many people have sat in this chair before, and how they sit, how they position their body, but mostly how they position their mind.

I am wondering with each word I speak what you think and if I have answered to meet your expectations and intentions. I can guess half of what you will say and how you will say it, because I have studied you from the moment we met, and I have studied those like you before. I know more about the human language and the nuances and gestures and games than you can imagine. I can feel your energy, and I can feel how your opinion of me switches. I can feel you weighing in on me and my words balanced against your thoughts.

I am uncomfortable in all ways and trying to present myself as comfortable. And this you probably know, as I already know, and you are watching me closer, as if in watching I will grow in security and trust. But I won’t. I will feel for you what I feel for everyone. I will either like you instantly or you will make me want to run. And with the liking I will analyze why and if this is valid, this feeling of companionship and connection. I will linger here a short time, especially in comparison to if I want to run. If I want to run my thoughts will circle around you for a favorable amount of time, working inside and outside of your being and attempting to decipher the danger. If I distrust you, I will likely always distrust you. This may be nothing you have ever said or done; this is my natural instinct.

I have been preyed upon by predators and sought out by experts. I have been probed and prodded and measured one too many times. I do not like the way you measure me. Not one bit, and I want this time to end.

I want to like you, and if I don’t, I fear my own rejection; I fear the dialogue that will reach into the contours of my mind and debate the whys and hows of my own inclinations.

I will listen to you as best I can, but don’t count on me hearing all of what you say. One word will set me adrift into another place, one unusual sound or one ordinary sound from you or from the room that is silent. I will hear what you do not hear. I will hear the quietness through the silence. I will hear the pauses in your monologue, and I will question your expertise.

I will wonder if you like me and then wonder why I even care, and why it is important that you do like me, even if I despise you and everything about your space. I will still want to be your friend, and a part of me will still love you, like some pup you picked up from the alley while in a mode of rescue. I will seek harbor and refuge in this space you have provided, knowing I am paying, or someone is paying for this form of companionship that frightens me.

I will question your degrees, your education, your protocols, your knowledge, your booksmarts, and your conclusions without hint of regard. I will dive down corridors of your soul and wander about hunting out the darkness. And all this I will do as you sit there scratching away notes about me.

For I will have compiled a list a volume thick in the time you have taken for me to answer a few questions. And simultaneously, I will have composed my own representation of self to you, pulling out what is expected, and what might make you comfortable, playing the game so you can see me and not be swooped away by the real me that is locked away behind this tattered worn curtain of self.

You can’t reach in, as hard as you try, unless I know you recognize me. I won’t let you past, unless I know you are real, that you have felt the deepest pains and angst, that you, too, have been in the shadowed darkness weeping for reprieve, that you have been abandoned, ostracized, left for nothing, created into something others wanted you to be. I will not let you near, unless I know your heart has grown in the depths of the oceans and shoots out to save those who wither.

Your documented degrees mean nothing to me. Your schooling is lost. What you knew and what you think you know is not this me staring back at you. I am in no textbook and in no past discoveries. My experience is uniquely mine, and unless you have dived into the caverns of my mind, unless you can see the world of illusion, as I can, then I have no purpose or need for you.

Entirely, I sit. Entirely, I am. And I understand beyond measure what grips you and shakes you and what makes you spin. I can tell in your eyes when you are complimented you are lit, and when you are unsure you folly. I see you, like a master watching a child; I see your discomfort, your waverng, your questions. But mostly I see straight to the purity of your soul, straight into the core.

So don’t waste my time with man invented games and manmade questionnaires that nibble away at my character and personhood. I am beyond this, these guesses and marks, this test to prove something that needs no proving.

I am not this Aspergers. I am not this Autism. I am human in need of being seen.

I am not a test subject, nor am I confused. I am not sick. I am not ill in the slightest sense. I am a unique and special individual born out of the ashes into the phoenix. I am both God and Goddess and have so much to teach you.

So do not look past the secrets in my eyes to check off the boxes of your own design. Seek first in me the wisdom I carry, the answers, the knowledge. See what I have to say. Hear what my world is like, for unless you have lived inside of this me, then you are the one that remains alien.

Don’t pretend you understand my condition or my brain or my way of life. Don’t pretend you can help me. I already know your tactics and trickery. As innocent and as kind you be, to me everything you present I shall take apart and examine from source.

Present to me your own self, the deepest part of you, the part the rest of the world hides so readily in a game. Take off your mask and meet me in the playing field I recognize: one of pureness, naiveté, child-like heart and genuineness. Do not strip me of the very armor that sews my seams. Uplift my attributes and charm, the gentle grace that illuminates from the spirit I am.

Do not think that because you have a title or name that you are therefore anymore or any less than the others. You are still garbed in your fashions and mystery. Undress, strip down, bear your nakedness and show me your frailty. That is the only reason I am here. Not to teach you how to help me. Not to teach you how to change me. But to show you what truth and beauty is.

My way is not wrong. Nor is my mind hindered. My way is the one of the child of goodness and authenticity, and until you understand that what I carry is no less damaged than the stars in the sky and no less worthy than your very own heart, than you cannot reach me.

If you want to help me, if you want to truly help me, then become my student, so I can become yours. Meet me as one. And see that I am not your patient, your client, or your case study. I am me.

In all my uniqueness I am me. And in this, in being me, in being all of me, perhaps in your wanting to help me, it is truly I that will set you free.

354: Drunken Hostess with the Mostess

| Aspergers Girls

Photo

A few weeks ago I hosted a party and I was entirely wasted before the guests arrived.

This marks the second potluck in WA my husband and I have hosted since moving here, almost three years ago. The event was a big deal to me, and I loaded my grocery cart to the max to insure plenty of booze and munchies.

The last time I threw a party for my neighbors, which was also the first time, I was politely informed by my good friend’s husband that there wasn’t enough alcohol. He then left and brought back four bottles from his house. This time I was prepared. I bought the hugest bottles of Rum and Tequila I could find, and several bottles of wine. I am not a big drinker. No, sir! Never have been and doubt I ever will be. In fact, before the year 2012 I probably averaged between two and three glasses a year!

Since finding out I am aspie, the intake may have increased a wee bit.

My reasons for not drinking are multi-faceted; like everything else in my life, nothing I do is simple. I focus a lot of conscious thought and unconscious thought on the “right path;” even though I recently have come to terms with the fact there is no fricken right path and it’s all a big game, I still have that old “right path” mentality, much like a gag reflex.

Not following the right path, makes me want to gag and come up for air. Not doing the “right” thing feels like a recent ordeal I underwent at the orthodontist’s office, in which I was being fitted for a new retainer device. (The diagnostic x-ray revealed that I have unusually large sinus cavities; no big deal or of special interest. But I mention it just in case you are collecting random data about me.) At the orthodontist the lady worker gently shoved a metal contraption filled with cold grainy-cementy goop atop the roof of my mouth to take impressions for my new retainers. As she delicately shoved the banana flavored pink goop into my mouth she said, “Remember breathe slowly through your nose.” While my mouth airways were obstructed, I kept saying to myself: “You aren’t going to die. You aren’t going to die. You aren’t going to die.”

That’s how I feel if I don’t follow the right path, or rules, or guidelines. (A right I am very much aware doesn’t exist, but I have to find and try to adapt to nonetheless.) I feel like I am being gagged, out of breath, and will die. Makes no logical sense. I know this. But my brain has “follow the rules” tattooed around its frontal lobe. I am still working on the removal process of this tattoo; it’s slow going.

For me, the day of the party, the right path meant: Temperance. A word I had latched onto and deciphered and longed to apply in my life. Temperance meant no indulgences and no drinking alcohol. The party would be the perfect stage to practice my temperance and do the “right” thing. At least according to the recent “rules” I was applying.

The gods laughed at me.

For by the time the first guests arrived I had downed three glasses of port wine. But trust me, I had good reason!

In the end it turned out fine, except for the time the one guest mentioned how her memory is bad and then she laughed in jest saying, “It’s because I’m a genius.” Totally joking she was. And then I, being so very much beyond tipsy, blurted out: “The funny thing is, I am a gifted-genius, a professional just recently verified this.” And then, after slapping my knee, and elaborating about my big brain and Aspieness, I went into a full confession about how I was trying to release ego and be filled with humility. I ended this, I think, with telling my neighbor, a woman I barely see anymore, “You know you want take walks with me now; a gifted, published genius I be.” I’d thrown in the whole publishing story in there somewhere, I suppose.

As I have mentioned before, I don’t drink much. I am an extreme light weight. A half-glass of pear-cider at the local pub and I am saying to my husband in a very loud voice, “That guy is checking out my butt.” I try to curb my alcohol intake, not so much for the constant records that play when I am drinking: Destroying liver, destroying liver, destroying liver and/or you’ll become an alcoholic. But because I become a dang fool. I really do. I lose all inhibition and feel like I am freeeeee. One of my (drunk) relatives once got onto my aunt’s electric wheel chair and flew up the freeway onramp to take a ride on the freeway. And I think that’s me. I think when I drink I take a ride on the free-way! WEeeeeeee.

So I don’t drink much.

But that evening, an hour before the guests arrived, as I was putting the freshly made salsa into a pitcher, I began to burn. At first I didn’t notice. I just kept rinsing my hands under water, thinking the burn would pass. But, no! The burn did not pass. It grew increasingly worse, like my hands were in the snow without gloves and the frostbite was setting in; it was a deep, unreachable burn, penetrating and erupting from the inside of every finger, and the guests were to arrive in less than an hour.

My husband was not home, and I was in a pure panic.

I rationalized and reasoned, and then concluded the culprit was the Serrano peppers! I had used my bare hands to not only cut the Serrano hot peppers for the salsa, but when my food processor stopped working (as all electronics like to malfunction around me) I had dipped my hands in the freshly ground peppers to scoop out the remains and transfer the mixture to the blender.

Oh, my gosh! I had soaked my hands in hot pepper oil!

I quickly went to the internet for help. Google God to the rescue. I soon found other people who had been as dim-witted as me. The remarks were reassuring. There were some helpful tips to end the horrific pain.

Eventually I tried everything listed as remedies: butter, milk, yogurt, sugar scrub with olive oil, etc. But nothing decreased the pain. I thought for certain my flesh was going to peel off. I was going to have fleshless fingers! And still the pain intensified. At this point, my feet broke out in hives from the stress. Yes, with the guests arriving in less than a half-hour, I had burning flesh hands and hived up feet. Glorious!

When my husband came home with some cortisone cream the local pharmacist said would stop the pain, I shook my head nooooo. My husband insisted, and I gave in. Soon I was screaming at a high pitch and downing wine as fast as I could. The cream had only served to intensify the burn. Dumb pharmacist.

My husband at this point is saying, “You are like Lucy from I Love Lucy, you know?”

That didn’t help.

At last I found the answer in one of the comments online: “Called ER (emergency room); there is nothing they can do. The pain will last four to six hours.”

Really? No one could say that from the start.

What should have come up on the top of the comment section was: You are so screwed!

And that’s how it began, how I began slurping the port wine. The pain-relievers I took did nothing.

The wine really didn’t decrease the pain much either, but by the time the first patrons arrived, I didn’t really care. And eventually the margarita helped to ease the ordeal to a hilarious event.

As our first friends arrived, I confessed, “I am already drunk. Let me tell you a story….”

And towards the start of the party, to another couple I said, “I am not rinsing my hands under cold water every minute because of OCD, just so you know, let me tell you a story…”

And by the end of the night, three hours of hand rinsing later, shortly after my gifted-genius, I am zen and ego-less spill, I said, “And you know what the best part about being drunk before any of you arrived is and especially about being in so much pain?!” I paused, dipping my hands further in a bowl of cold water. “I really honestly don’t care what you think of me.”

And that was that.

(another funny story)

353: I couldn’t sleep

| Aspergers Girls

I couldn’t sleep. My mind was in a state of unrest and I had much physical pain. I left my chambers and came upstairs and wrote this in one quick sitting. I apologize for the visual appeal, as I know, for me, at times it is easier to read in distinct paragraphs, but this is the way the piece is meant to be presented and delivered. Having written this I feel emptied of anxiety and rescued from much of my pain. I do not understand where all of this comes from and why in a sense I am haunted by thoughts until I release them. But I have released, and in doing so I feel realigned, comforted, and home. I choose not what I write and for whom I write. I know only that this is what I was given. As I am tired now and ready to rest, I ask that you also forgive any errors I overlooked. Blessings and Love ~ Sam

Your pain is not a gift, nor is it a curse. You have not manifested your suffering or created or birthed it into being. Your pain is not more because you are chosen. Your pain is not less because you were not chosen. Your mission is not grander with pain. Your mission is not weaker in the absence of pain. To wear your pain on your sleeve is to say: Because I have suffered I am special. But we say onto you everyone suffers, everything suffers. When one suffers all suffer. When ones pain exceeds another the pain is not held by one alone; the pain is held by each body here, one upon the other taking in the pain. Pain breeds pain and suffering breeds suffering. This is not to say that the sufferer is to blame or in charge of his suffering. No one is in charge of his own suffering. Yet everyone is in charge of the suffering of one. We all suffer. No matter the witness or contest, no suffering is greater. There is no way to compare suffering, as there is no way to compare love. And in so saying, you cannot love without suffering. You cannot suffer without love.

Suffering occurs in the absence of love. Every type of suffering denotes a missing element of being. There is a string of events that will show you this suffering. Genetics mean nothing; nor does circumstance. All is merely oil on the canvas, paint applied to represent what is happening. No paint suffers more. Even if the paint depicts a horrible picture of torment and suffering, the paint does not suffer. The image denotes suffering. A representation of suffering occurs. An observer can find the suffering and behold the suffering and relate the suffering to this self in form, but the image painted feels nothing. We are these images. The suffering we feel is not our own paint, the suffering we feel is when one looks upon us and sees the image represented by the paint. If our image be grand through and through, the colors brilliant and bold, the semblance of happiness present and moving, even still the observer may suffer. For he may then sense lacking, the happiness pouring from the once blank slate and indicator of his own demise and inability to reach potential. It doesn’t matter the suffering or the imagined joy depicted in illusion; whatever the observer choses to see, he sees, and whatever the observer refuses to see, he misses. No two can set eyes upon eyes and see the same; this is impossibility, but still you insist reality is real. Well, whose reality is real? Whose view of the painting is adequately represented as truth? Which viewer’s viewpoint do you choose? Yours? Another’s? A beloved’s? An enemy’s? What if we were to say your enemy’s view is as equal to yours and yours to his? For whatever he holds true becomes his painting and whatever you hold true becomes yours. Therefore when two meet and behold the colors brought forth, your illusion is formed not once but twice, in the illusion you perform and the illusion you present as truth of your neighbor. Therefore when two meet four illusions are formed. The painting of one, the painting of the other, the viewpoint of one, the viewpoint of another. All is illusion quadrupled and multiplied in meeting, and still one walks away thinking he holds the truth. But what of the four is the truth? Which one? When one holds true the representation of himself is what he holds as truth, then what is this truth based on but not illusion after illusion built into storybook of truths. And further, when one holds a truth of another based on the view, does he not only counter the illusion of the first but intensify the illusion of the other. In seeing this there is a temptation to unravel the truth, to single out which of the choices is real. But this is the same, very much the twin, of choosing between the reflection in water multiplied thoroughly and deciding which reflection represents the truth of where one stands. In knowing this, we look back at where we stand and examine who is standing and we see it is this us, this I, this me, but who is this I that exists if not singled out and marked by the judgment and makings of the world. How can a being move in this world without absorbing the illusions, and thusly how can a being move in this world without being a rotating painting of illusions gathered? Life to many is merely a sponge of collection of mirages, the water sucked from the view, when no view is there. One illusion upon the other illusion we stare. And still we wait as the illusions unfold for you to see such common place as where the illusion bends. For what if I were to take a color with no color, say ye black turned white and then turned invisible and paint over the canvas once colored, until the blending is nothing but space. And what if then you stared into the illusion and peered willingly and came out with a satisfied grin, simply proclaiming I have seen beyond illusion. I have seen space. But no, we would say to you, you have not seen the space behind illusion. You have simply seen the replacement to illusion, the gap filled in with a substitute in an attempt to satisfy your appetite of discovery. Peer again and I shall resubmit the color as evidence of space removed, and then what say ye? Do you say the illusion has returned? If illusion returned than nothingness cannot exist; for nothing can take the place of nothingness and nothing can fill the void inside a void. Until the nothingness is removed than something remains. As long as there is a space, something can be filled, something can be altered, something can be changed, something can arise. It is in the space beyond space one looks then, into the realm beyond inquiry, stretching the mind in solution, the band made taught and heavy. Wherein where the fault lies is in the canvas itself. Within the painting. All searching is based on the paint of illusion. All decisions granted in the realm of illusion. Illusion has taught, say professed, where to look, and in listening to illusion the seeker finds only illusion. Seek not the canvas of paints, seek the painter. Who is the one painting the illusion and who is the one with the paints. Is this not the collective we? For who is to say the illusion of one is not the collective illusion of all who look upon. Exceedingly we look one upon the other, our brushes moving to create what we see. Not what we wish to see, for that would imply ownership and dictatorship, and even the power of creation, but that which we have taught one another to see. Each illusion a teacher to the next. Each mask painted with the colors of the soul that is supposed to be. Can you not see the illusion arises first not with you, first not with one, but in the making of all? For together we are scribe and painter writing the story of the moment, not with our thought and thought alone, but with the perception of thought. It is not enough to say: think these thoughts and all will transpire as planned, because in this way there is a plan, and in this plan is illusion. In this illusion is a false hope that the one and not the collective know the thought that ought be formed. But what then if one thought is deemed better than another thought? Then do we not begin the battle again. Painting illusions this time with paint dismissed and thoughts induced? Your thought, your word, is no less, better or worse than another. You cannot decide what word is just and which unjust, which word enough and not enough, without creating more illusion. The world will continue to spin in illusion, as one continues to attach to illusion. No answers can be found when one is set upon another. No answer true when searching in illusion. The search is not in self or outside self. The search is beyond the painting and the canvas. The truth is the paint and painter. So whom may we assign as this worthy painter if not we, if not truth, even if this truth be illusion? Who is this truth bearer? The one granted the role of leader and justice. Is this not you? Is this not your neighbor? Is this not your enemy? We say you know this truth innately; it is in the unraveling of each to find the substance of whole in where the truth bides his time, hidden in the controversy and friction between. And this is where we stand on the bridge between illusion and nothing. Not on one side or the other. No in right or in wrong but in the center, in the journey when love is brought out of the flames of illusion and one ventures across the avenue in search of nothing. There we stand in the bridegway waiting. But with blinders you pass us by, as your goal is to cross the bridge and not stay in the place between. For you have been taught by illusion that the place in between is passage way only, serving to get from one point to the next. What you cease to understand is there is no point and there is no next, and as soon as one illusion is reached another is formed. What you cease to understand is that there is no stopping point, just as there is no starting point. You are already there twice over, and twice over again, doubling your path to prove a point until illusion dollies in her own illusion and splits open leaving you centered in predicament. And there you sit both witness and observer. One standing and staring at the other. The two ones meeting. And there you merrily judge your ways, lost in the in between, stepped out between illusion and nothing, staring down your own brother, your own self. For you are not this broken hollowed isolated one. You are we and we are you. But still you stand in the half-way point of in between uncertain where to go. When there be no place to go but here. Throw down your villainess ways, pave the roads with the intentions naught. Take out your heart and lay it down to be crushed and observed as splendid. Bleed your love out to the world, a cross bearer of your own-making, not for His glory or your glory, but for the glory of knowing illusion standing still. Find the stopping point of illusion and tear down the stopping point of where and when. Believe in the absence of intention and fulfillment of love. Bring down your illusion and bring down your guard. Say to your brother I am love and onto him beseech him your goodness. For you are more worthy than the tenth illusion suffered, the levels laid out in fashion unbridled and unbroken. You are more worthy than the battles that came again and again to show the way, when no way exists outside love. All be said in the name of love. And here my brother is where illusion and nothingness depart, in the arms of love carried out by the masses rebirthed in glory and built bountiful by the journey delayed.

“A human being is a part of the whole called by us universe, a part limited in time and space. He experiences himself, his thoughts and feeling as something separated from the rest, a kind of optical delusion of his consciousness. This delusion is a kind of prison for us, restricting us to our personal desires and to affection for a few persons nearest to us. Our task must be to free ourselves from this prison by widening our circle of compassion to embrace all living creatures and the whole of nature in its beauty.”

–Albert Einstein