Month: March 2013

360: The Ashes of Discovery

| Aspergers Girls

Photo on 3-31-13 at 12.07 PM

I pulled myself into church, today.

I have been searching within about where to take my next steps, in regards to my calling and passion for service. I believe spirit planted in my heart a connection that will lead me through.

Just yesterday, I was able to slip out of a depression brought on by PMDD, a condition I believe to be common with women on the autistic spectrum, and a condition that quadrupled my pain and quadrupled my thoughts of unworthiness.

I am recognizing that the first twenty-days, following my cycle, I have energy, renewed hope, an abundance of radiating light, and confidence in my journey. Interestingly, when sorting through my blog posts, I noticed a definite trend. Through my words, I can readily see how I become sad following a cycle of hope.

It is very surreal for me to step back and become the observer of self, to see what has transpired in the last thirteen months, and to reflect in the place and places I stood. The experience teaches me that indeed I am continually transitioning and continue to be increased in my faith and vocation, despite the set backs and the challenges, all which derive from my own self (ego, self-form, lack in faith.)

In recognizing this PMDD and how it affects my moods, and thusly my ability to remain steadfast in hope and courage, I am understanding I would benefit from putting support in place. As the last ten days of the cycle following ovulation, (I follow the exact cycle of the full moon.), I seep day-by-day into a greater degree of pain and disheartenment. I have found, though, through review, if I am surrounded by family and/or friends, I am pulled out of isolation, and therefore the depression is lifted and I am filled with love.

In seeing this, it makes sense for me to put into place a support system, in which my friends and family understand what is happening to me at a biological level. I am working on creating this space for me, of love and nourishment of soul, in the next weeks, while I am in a “good” place, not yet exhausted or immobile from the various “syndromes” I am healing from.

This has brought me much clarity, the recognition of the PMDD and how in effect I am not governed by my mind and/or spirit when the hormones shift rapidly. Knowing I am a part of the percent who feels an actual sensitivity to my hormones makes complete sense. And to a lesser degree has, much like the discovering of Aspergers, led me to several ah!-ha! moments, in which I review the past in flash backs and recognize that though I struggled repeatedly for answers to my pain and suffering, and dedicated my efforts to “controlling” my moods and pain through faith, that in fact, some things were beyond my control.

I see this as a direct parallel in how I searched for decades for answers about why I felt different from the majority (Aspergers), and wearily came up with few answers. In the past, increasingly, as I dedicated myself to finding solutions, increasingly I was disappointed, and sometimes shunned and criticized. My strength in self faltered in stability, as my hormones shifted, and I can see this in photographs of myself where I am bloated, discouraged, and have a sadness in my eyes that radiates lost and abandoned.

I now understand that why for some thirty years I have struggled monthly with a feeling of being lost to myself. To a degree I have been. For during these ten days, I develop a skewered view of my physical body: I believe that I am extremely fat, ugly, disproportionately put together wrong, and unworthy of recognition. I essentially hide from the world and the fear of judgment, becoming immobile and unable to leave my house, even to step into the yard. This confusion of my appearance is a trait of PMDD, and possibly a result of a variant enzyme in my body. This makes sense.

However, for so long, with both Aspergers and my mood “swings,” I blamed myself and my inability to rise and conquer my own mind and weeping spirit. How funny to think I was my worst judge and worst enemy, believing if I only tried harder and hard enough I would create the person I wished to be.

In truth it was the process of surrender and exposure of self that led to the underlying waves of causation, e.g., admitting weakness and loss of control led to answers. This recent last week of self-discovery was patched with confusion and doubt. Yet, I am thankful I gave up long enough to find the answers. Too, this past week, was filled with fear, which I am certain affected my pain-threshold and outlook.

The fear arose from illusion: that of death, illness, and surprise. I have carried with me, since a small child, the inevitable feeling that death will surprise me. Perhaps this dread surfaced from the dreams of prophecy I had in my youth wherein I predicted the death of my beloved pets. Perhaps the fear was constructed from the experience of continual change and loss of people in my life. Maybe, the fear took root when my kindergarten teacher died. Or just maybe the distrust and feelings of doom are genetically or spiritually a part of who I am at this moment.

Regardless, fear of death is a constant battle, an aspect of my life I am releasing continually. I have learned to recognize this fear before both feet are through my threshold. I acknowledge this existence of up most illusion.

“Fear,” I whisper.
“Fear,” I say.

And then I retreat back, a gentler part of self, and watch with much release as the messages spin and play, some forgotten record moved again by some forgotten will. In this way I survive. In this way I live.

Recently, in observing this fear all week, revved-up by the revelation of an inherent physical “flaw,”—that of PMDD—I was able to again and again surrender to my higher power and wrap my heart around the concept of submission. I feared, certainly, as the illusion came knocking again and again. But something remarkable has happened in the last months. In essence, I am so highly aware of fear’s calling that at first knock I am already removed, letting only a part of self dance and the rest set about to learn, as if placed in classroom by something beyond chance.

This is a level of transition from where I was before; and though I tremble and weep inside, experiencing moments of extreme bouts of forsaken soul, the rest of me, a greater mass, retreats into the echoes of truth, beckoning the light at the end of the bleakness to move forward and touch me before I step to touch light.

And this is glorious. For as I am in the mold of shadows, I also dwell in the light of goodness. And I know, with this flicker of hope, I will be alright. I am learning, slowly and steadily, to hold onto the glimmer, the slimness of glory, and learning in time, with the passing of days, I will return.

Is this still frightening, this purging of fear?

Yes, extremely so.

But am I growing and reaping benefit?

Yes, I am.

In all ways I am the embers in the fire pierced in pain, releasing to the cold black of coal, and then being rectified, removed from the flame ash, and brought back to the earth of goodness. And this is what I hold onto: The ability to continually rise from the ashes.

In saying all of this, I will release my fear, as I have been taught in vision that beyond fear is where I find love’s adobe.

When I abide in love, I am free. And so I tell you, my listener, what I fear.

I fear that I am creating a book and that in this book will be a history that is all of me, and that is to me frightening in varying degrees.

First is the judgment that will be set upon me, as writer, as woman, but beyond that as spirit. But this I can conquer, this fear is limiting and unsubstantial in its potency. For I know I am love and light, as I know you are.

The second fear is found in the process of building a foundation of support. I will be led, and have been led, in direction in regards to this journey; a journey which I now hesitate to call mine, as so many of you reading are affectively part of this journey now. In being led, I know I will hit walls and ditches and even waterfalls; I will tumble and fall; I am human and shall not be perfect. And in this fear, too, I am ready to breathe. I can breathe here, in this illusion of failure and wrong turns, possible deceit, and survive. I see this as only shadows and a necessary part of my path, much faced already and much climbed. So, yes, this fear I can release, too.

Thirdly, and perhaps the biggest fear, is found in the potentiality of being separated from others.

I am fearful I will non-intentionally create a path that others interpret as rigid, narrow, and religious. And that is not my intention. I welcome all walks of faith and walks of life. I have been shown in vision the discrepancies of spirit filtered through the falsehood of judgment and pride. I have been shown that my path is never the right path and never the right way. That my perception and my very comfort and haven of safety, have been self-created based on circumstance and what I choose to see and make my foundation and truth. In essence my truth can never be anyone else’s truth unless the all of us are one.

And in this way, I hesitate, in the way of a one wanting to be a helper to all and not a select group. I want to be a gift to all who need refuge and retreat, and not a one who would by appearance, and appearance alone, be an illusion of someone who segregates and isolates.

Thusly, in connecting any of my works to a title or an establishment, I also at the same time connect myself to a “label,” and to the judgment of others based on that label.

And it is in this judgment my fear lives. Here in the heart of me who weeps knowing that by choosing anything at anytime, others are automatically left out by their own doing.

But left out of what? Left out of what? Is what I ask.

In truth, I imagine, they are actually left out of nothing, beyond my own journey.

And so is this my fear: The fear of being separated by my perceived actions?

Is this fear not once again the same fear that is the irrigation and fertilization system of Aspergers?

The fear of being left out by another from his or her perceived judgment of my action. That of his energy shifting, his thoughts, his opinion, his view of me, in fact the existence of me (as I only exist in interpretation), being altered without my control.

Yes. This is the deepest fear. The loss of control.

In reviewing this with audience, I see that in stepping out and making choice in the direction for my book, I am at the same time creating a space for my deepest fear of separation based on others’ views. And thusly, I recognize that this, too, this journey to create my story into book form, like my genetic makeup, like my view of the world, like the way I communicate–literally crying and shaking in my boots—is yet another mirror exposing fear bred from the beast of longing to control.

And today, on this day of resurrection, I release, I let go of this part of self, who so longs to unite and join, but still hovers under the illusion and want of control.

I let go of this self who wishes to dislodge judgment and rigidness from her own being, yet still formulates and categorizes in hopes of solution.

I release this frightened child who thinks that like before the rest of the world will rebel against her way of existence. And I give to myself the gift of removal of control.

With deep breath and settling awareness, I set about to create a place for my mission that is not predicated by fear, not paved by intention beyond love; a path that circumvents all thoughts of separation.

In doing this, in proclaiming my truth, I again dismiss fear to the outer barriers, where he waits to teach me more. And I celebrate his fire, his flame, his ability to mold me again and again into the ashes of discovery.

I know not who I be anymore than another. I know nothing more than my brother. I know only that I am called, and in so doing will no longer hide in the shadows of fear.

Because I know by faith I walk, and in this way of the child with passion, I continue forward to meet the next imagined stranger who is already friend.

359: Call Me Crazy….an Aspie Rant

| Aspergers Girls

Call me crazy (I’ve always wanted to use that phrase in a sentence.), but I have a hard time reading a book or article about how to best associate with (e.g,. marry, date) people with Aspergers, when the authors writing the material don’t have Aspergers. I don’t know exactly how to describe this irkish-sensation…

however the scenario of a typical (non-aspie) “professional” announcing to the world how to help someone with Aspergers seems akin to an alien beaming down from a purple planet and telling me how to be more human.

Yes, I purposely did a spin on my example, as in most people’s eyes the “professional” would be the human and the aspie would be the purple-planet alien. (One-eyed-one-horned-flying-purple-people-eater entering mind.) But indeed, that is precisely my point; so much is written about how to help the person afflicted with Aspergers or how to get along with the person with Aspergers, but what about the articles and books that explain to the person with Aspergers how to get along with the non-aspie people?

Why is it that I, and my fellow non-aliens, are continually dissected in our ways, set apart, and then sorted by our inherent flaws, so the others can learn to live with us? I mean is this being done for other people with “special needs,” too. Or is it just us Aspies that need to come attached with a handbook?

If we changed the scenario, just a tiny bit, and turned this into cultural differences; I don’t know let’s say an entire book written by a Caucasian person about what it is like to be African American and how to adapt behaviors and implement strategies to get along with the African American, do you think maybe there might be an issue? Hmmmm.

Or how about if a Doctor of….let’s see…. How about someone who studies squids! Let’s call him Squidman. Well Squidman all of the sudden finds out there is a bunch of money to be made in writing a book about Redwood Trees (as they recently became 2% of the population of all trees!), and so seeing he has a doctorate degree in squids and all, he sets about to study up a bit on the mighty redwood. And soon Dr. Squidman becomes the leading expert on redwoods! Cha-ching, Cha-ching, and out he births book two. Redwoods of the Deep Sea.

Is this making sense, yet? I guess being aspie myself and all, I am just a bit weary when yet another book or freelance article comes out about Aspergers and not much attention is paid to the source, the credentials, and/or the personhood of the person writing the book. I’m certain this happens in all subject areas that suddenly become a hot topic and therefore a hot commodity, but when the subject is about an actual neurological condition with actual people who have the condition and are struggling to make sense of the condition, and the whole sharks-coming-out-to-feed transpires, the experience is just somewhat that much more frightening and sad.

I am a bit over sensitive I suppose (must be my lack of empathy or inability to process emotions the typical way) about trusting any “experts” in general, as they belong to the same clam (clan…sorry Dr. Squidman did the editing) who couldn’t figure out for the last twenty-years that I even had Aspergers and who couldn’t figure out my son had it either.

If I read one more time about how a person with Aspergers can’t read non-verbal cues, I am going to scream, have a huge aspie meltdown and run out the door naked! Because you know people with Aspergers do that. Every full moon they run out the door naked and yell at the Trees. They do, really (Squidman, 2013).

After fifteen years of being married to me, my husband is a leading expert of what it is like being married to a woman with Aspergers. With his help and my brains (and his brains, too; he is pretty smart), we could tell you how the whole marriage to an Aspie person works. And there ain’t no little book or one page article that will do the trick! It’s tons of work, tons of compromise, and tons of love; just like any successful marriage. There isn’t any secret trick or secret way to make it better or to make it easier.

I don’t need to come with a handbook that explains to my mate how to deal with me. He needs to come with one. He’s a man! All men need to come with one, and a woman should write it.

Every person with Aspergers is different and uniquely unique. We can’t be clustered into one type of person with a few easy steps to make life easier to get along with us. HELLO! I am a person. I am not a type. I am not Aspergers. And I am not a male with Aspergers, either. There is a difference, you know!

Of course I respect people trying to truly help other people; but it’s all the profiteering off of the new trend “Aspergers” that’s got me a bit concerned. All of the sudden everyone is claiming to be an expert, when the “experts” don’t even know what Aspergers is yet, what causes it, or how to classify it. I mean there are articles claiming brain imagining can now detect Aspergers. It can? Last time I checked it couldn’t.

People are so hungry for knowledge, which is a great thing, but it’s a time to be cautious too and to take notice of the wolves and deceit. People will regurgitate facts to push a book. People will copy works to make a dime.

People will do what they have always done: exploit a people to make a profit.

And that’s what’s so ironic; here are all these NT (neurotypical people) rushing out to claim fame through trickery, lying, stealing, or at the minimum claiming they actually understand a complex neurological disorder they have never experienced, while it is the people with the character traits of honesty, sincerity, no game-playing, and loyalty whom are being dissected and analyzed and spread out for display.

Seems to me I need a book about how to deal with the profiteering thieves!

I am by no means saying everyone who writes about Aspergers ought to have Aspergers. Some of the leading experts have done brilliant work and assisted thousands of families; but I am saying be careful of what you read and what truths you believe out there. There are many clichés being recycled, many which are not true and don’t apply to the female with Aspergers experience.

I am not a child. I am highly intelligent. And my husband doesn’t need someone else telling him how we can better get along. I am right here. Ask me! I know.

And since I mentioned it. Here’s my quick article on being married to a man. I have been married for fifteen years to one, so this makes me an expert! Also, I have a Masters Degree in Squidology.

1) He will watch sports a lot. Take time before the games to express your needs. He may seem self-absorbed and fixated during the actual game, but don’t take it personally. He may get overly emotional, sometimes shouting obscenities or displaying nervous ticks. Give him a timer and let him know after an hour it is important for you to receive his undivided attention. Suggest five minutes to start and slowly increase the time. Then in return let him express a need you can fulfill. You can use a timer for that, too.

2) Toilets might be an issue. Keep the lid down when you can. But if the toilet is continually left up by the man then give him gentle reminders. When he does remember to shut the lid consider leaving a sticky note with a smiling face. If he still doesn’t remember, give him a break, he has short term bathroom memory condition. This will affect the toilet paper roll being refilled and he may forget how long he has been sitting on the toilet. Be patient. His brain is different from yours and obviously he needs time away. Ignore the smells; they eventually dissipate.

3) As a man gains weight his snoring will increase. Also, he might be prone to binge eating and drinking, especially during social functions. This is a natural response to being around other people of his gender. Keep a bag of ice in the fridge, so he is prepared for unexpected guests. Invest in earplugs. He can’t help the snoring. And with all the fast food establishments, he isn’t to blame for the gain in weight. Hold tight. Reflect the behavior you want to see. Eat healthy in front of him and cuddle him when he snores. If all else fails take breaks on the couch and let him stretch out in bed. Remember his body is different than yours.

4) Socializing can present problems. Try to recognize his behavior does not reflect you as a person. Sit down and have a talk in a safe and calming environment. Provide him with notecards about appropriate conversation in front of your friends. Roll play scenarios and give him examples of how to build you up and compliment you in front of guests. If he already does this, you are ahead of the game. Show him what is appropriate to wear. But don’t throw out that old shirt no matter how ugly it appears; this represents a connection to the past and provides a sense of security. Now that he is married he may seem miserable, but be reassured he is not. You are.

(This is a stereotypical generalization of a gender. Kind of like a stereotypical generalization of a group of individuals who have the same neurological condition.)

358: Love or Fear? Learning to let go of behaviors.

| Aspergers Girls

Some of my personality traits are directly stemmed from fear. What I once thought were very much aspects of my “aspiness,” I see are/were merely coping mechanism in attempt to adapt to the way I see the world.

Primarily, from birth, the world has seemed an unsafe place. It was not until I risked my greatest self and outpoured my authentic fears and misgivings that I was able to unleash this fear that had for so long been my bed partner.

For decades, I carried fear with me, as if fear was my only shield. In fact, oftentimes I mistook fear as a friend. Looking back, I understand I chose fear and “he” did not choose me. I chose fear because, though fear be an illusion, at the time this emotion seemed the only emotion I could comprehend, in essence the only emotion I could feel. Fear was my feeling. Encompassing fear, virtually sprouting off of his imagined edges, were his dynamo of legions, his mutant henchmen, cloaked in garbs of: abandonment, not-enough, isolation, never good, ugly, stupid, crazy, and so on.

The illusions dangled in front of me, and, in so doing, led me to latch on to more fear, for as I was lost in the dance of unworthiness, I had no one to turn to but fear. Fear became my shadow, the very essence of what I projected outward and how I walked in the world.

People could sense this—my fear. What I thought were off springs of my love, e.g., smothering with attention, care-taking, continually checking in, over-sharing, creating, placating, agreeing, giving, being there, listening, etc., were in actuality further illusion. My love for another did not exist. My love for others could not exist because my love for self did not yet exist. And as I had no love for myself, the only thing I could find was fear, and the only thing I could manifest was fear.

Today I am only beginning to understand the concept of love because I am only just beginning to accept and love myself in completion. The more I do, the more I step away from fear; the more I step away, the clearer my vision becomes. The removal of self from the circus-ring of fear resembles the removal of residue from a glass-window. I spray the film with love, and the love washes away the illusion, revealing the beauty of existence.

Fear is more so a drug to me now than a partner. He is enticing and familiar; however I recognize the dangers. I loose myself in fear. When with fear, my energy is not my own, and I become unhealthy in behaviors which affect myself and those around me. I feed off the fear by attempting to suck up the love from others, perhaps in the form of approval. I feed off the fear by taking myself out of the picture and focusing on what is outside of myself.

In fear someone or something is wrong. Whether this wrong is assumed to be in a behavior, a projected outcome, a circumstance or in self alone, makes no difference, for illusion exists regardless. In attaching onto the illusion of fear, something neutral turns to something beyond neutral.

In applying fear, I judge. In a sense fear and judgment are one. Although I understand the two vary: fear is an illusion and judgment is a response to fear. Yet still, to see another openly without judgment can produce no fear.

People judge to understand, or so they think. They judge to categorize and make sense, or so they think. But as young children we survived without such categorization. We existed to play, to laugh, to feel joy, and to openly give without reason or intention. We loved.

When judgment slipped in, a behavior/reaction repeatedly mirrored by society, fear slipped in as well. This isn’t to say judgment is the only sub-product of fear, but it is a very large portion.

Fear often stems from the inability to accept self and love self. In fear, a person projects himself onto others, finding the others’ flaws and differences; or in cases of fondness, a person picks and chooses the character traits of another that he or she likes. What we forget is that inevitably everything and everyone will change and transition, for nothing is stagnant and no one remains entirely the same, predictable, and unmoving. To initiate friendship and/or love based on judgment and evaluation denotes eventual failure, unless the illusion of fear is lifted. In false-love various aspects are appreciated and various aspects are disregarded. And in so doing, an individual hopes in someway that the aspects he has chosen to appreciate will grow and the aspects he has chosen to disregard shall simply disappear. Furthermore, we apply the aspect of hope, hoping the other might change to our liking, improve, or learn from us. This is not unconditional love. This is love and/or union based on judgment. This is love based on fear.

To love fully one must remove him or herself from the equation, to remove the judge, and become less judger and more lover. This, the removing of judge, is an impossibility until the aspect of self-love is grasped. When one loves self, he or she sees the beauty in everyone. This is a truth.

When one loves self, he or she sees straight to the core of the other person and sees a reflection of self. He or she sees a person just as self; a person trying his or her best to walk in this world. The rest are illusions. The doubts, the fears, the misgivings, and even the non-trusting. A person who loves self recognizes these truths and a gentle knowing radiates from his or her being. People are naturally attracted to a person choosing to release judgment. There is a safety there, a familiarity of home.

In this knowing the onlooker accepts the other as equally one without judgment and without fear. This is true love and this is the only love possible. All other concepts are intruders and imaginary games.

Some of my past behaviors based on fear that I thought was part of “me” that I could not change:

1. Over analyzing what someone has written or spoken and trying to figure out the meaning. I was over analyzing in an attempt to protect myself. I thought I needed protection from the other person hurting me. I over analyzed to make sure I wasn’t misinterpreted, misunderstood, seen in the “wrong” light, taken the “wrong” way, and/or in attempt to catch hints of how the other person “saw” me. Basically, I wanted to try to make sure the other person liked or, better yet, loved me. The focus was on self and self alone. What did this person say that reflects me as a person?

2. Obsessing over someone. I mistook this as a physical and/or spiritual attraction. What was indeed going on was primarily bio-chemical fed by my fears. While I do believe in kindred spirits, I do not believe that when I am obsessing and/or acting in an addicted manner that this is an indication of love or even passion. I believe obsessive behavior about another person stems from not feeling worthy enough in the core of self. How can I make this person see and love me?

3. Talking a lot. When I first meet someone I tend to go overboard and over share. In a huge way there is something chemical going on in my brain, there is a need to verbally process and I feel release when I am done. I usually do what I would call “over-sharing” the first two or three times I am with someone in conversation, especially if one-on-one. I thought this was something out of my control, a part of my wiring. To a degree there are elements that present this as a truism: that indeed I do need to verbally process to relieve the pressure inside of me. I do not know if this behavior will stop completely but I know it can transition. I recognize when I feel at peace I don’t need to over share. I am recognizing too that I have the power to choose what I share about. I can withhold words that don’t benefit me or another. When I am coming from a place of fear, I am thinking: How can I make this person know me? Or look how smart I am!

4. Over-giving. When I find myself creating for someone else repeatedly in the form of poetry, stories, paintings, or the like, or in the form of service, such as cleaning or giving of my time, then I know I am over-giving because I am in need of love and recognition. When this happens, I am not feeling filled within self and think that if I give enough to another, they will 1) See how lovely and giving I am and 2) Eventually give back. This is again conditional love. This is love based on return. I am thinking: How can I get more love from them? Look how giving I am.

5. Being short or disappearing. In conversation I might not answer back or provide little responses, hoping the other person will notice that I am upset or need validation. To me this feels like game-playing. I am essentially wanting attention and wanting love. I am learning to ask for love when I need it, instead of hoping the other person will feel bad enough to give me something that resembles love, but feels more like pity. Love me, Pleaseeeee.

It is exhausting to always focus on self while at the same time fooling myself into thinking I am being loving and have the other person’s interest in mind. For me, it is far easier to just love self and then in return love others.

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.