challenges

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.

348: I Still Have Those Days

| Aspergers Girls

Photo on 3-23-13 at 9.57 PM #2

Today I did the equivalent of stacking toy blocks or lining up cars. I spent a good three hours going through thirty posts on my blog, reading, summarizing, and reposting in uniform formation. I had to. There was no choice. I was on the couch, seated with my laptop until three pm, and that was most of my day. It didn’t matter that there were blue skies out, or that it was a Saturday full of possibilities. I knew I needed to retreat, if not by choice, then by necessity.

For despite my strong faith in God, my strong faith in self, and in my life and calling, I still have those days. Heck, I have those moments throughout each and everyday, where I just don’t think I can make it through. I don’t think about ending my life; I am nowhere near those thoughts. But I do imagine what life would be like if I was someone else, how that simplicity would feel.

There are times I savor the thought of simplicity. I recognize no one’s life is easy, but I too know that there are people who don’t worry from the moment they wake up if today they will be able to leave the house, if today they will be able to face the person in the mirror and recognize who they see, if today will be a day dominated by fatigue and pain.

Today I couldn’t stand myself; not in a large degree, actually not even in a small degree. And I guess it wasn’t really that I couldn’t stand myself, it was more so that I was weary and oh so tired of battling with my self. I just needed to stop, to turn off all of the decision-making, the have to’s, the when’s and where’s. I just needed reprieve.

I felt foolish at times, a mommy and wife, physically functional for the most part, but entirely incapable of doing anything but stacking her imaginary bricks, soothing herself through repetition, words, and numbers. Again and again.

When the stacking was through I wrote; I wrote to friends and then I wrote the previous post, because I needed relief. I wrote what I saw in images and heard in sounds, and I scribed until much of the angst was out of me. I realize I might be the only one that understands the prose, and I reasoned with myself that was okay, completely okay.

And I searched for the word okay further, to apply the word to myself like some special-ordered salve. I am okay. I am okay. I am okay. I kept repeating those three words to myself in scattered whispers.

I was so absorbed in not leaving the couch, I forgot to drink water and I forgot to eat. I just couldn’t move from the couch.

I don’t know why it is I was made the way I am, and why my life is the way it is. I know living can be hard. I know this. But somehow I keep going and keep trying. I keep looking at the woman in the mirror and saying bless you, if not in thought, then from a distant land, a place in the future, where I am aged and have lived long and well. A place where I am proud of where I have traveled and what I have accomplished.

Eventually I got up, showered, and went out with the family. I won’t say there weren’t moments I wasn’t crying in bed not wanting to leave. Because I did dread leaving. I listened to my thoughts, became the observer. I knew what was going on. They were familiar messages: “You are too ugly to leave the house. No one loves you. You are worthless. You are not enough.”

And I battled more and more and more. But in the end I rose. I bid the woman in the mirror hello, I woman I did not recognize or want. And despite the nagging voices, I wiped away my sadness and I tried. I tried to be this someone I am supposed to be.

Most days aren’t this hard, not this filled with doubt and struggle. I know part of my experience is hormonal. I know I will snap out of my melancholy when my chronic physical pains subsides some. And I know my brain is still processing a busy week past.

I didn’t want to forget this day though or leave this day out. Because in many ways these are the days that make me stronger, these are the days I look back upon and think I made it. I made it through again. I made it through to another day.

343: How I long to be the sun

| Aspergers Girls

IMG_0546

How I long to be the sun…

I am such a dichotomy of prisms, multi-faceted in a way that confuses me, the observer.

I keep looking into myself and finding only tunnels, web-like hallways leading in all directions. There is such mystery here, and clutter. I am an open book, but not to myself. I am an open book to only that which I let out and that which I allow in. Even as I share so much, I hold eternity inside. I worry, when I have all the reasonings harvested of why not to worry. I fear, when I have all the reasonings set out of why not to fear.

I am this pendulum; this constant pendulum. I know not what moves me, but I am continually moved. At times I feel I become the person you are. At times, so many times, I lose the person I am. I absorb the world, all of the ingredients brought into me; and then I am left, in my loneliness, both awe-inspired and drowning in pain of recognition.

I see too much. I feel too much. I know too much. And there is no remedy.

I am the heap of pain that one carries on his shoulders. I am the sorrow of the mistress. I am the angst and guilt of the destroyer. I am the pillager weeping at the joyful bounty. I am the child in the glee-filled park. I am the mountaineer on highest peak. I am the widow crying at the grave. I am the tie tightened around my very neck, chocking me from the outside, to match the fury of pain within.

I am enveloped in need and then enveloped in release. I am tortured by thoughts and misery, and then let free by understanding and the depth of beauty. I am unstable, yet stable in my instability. I am consistent in my varying degrees of emotions. A spit-fire of desire brought to tender knees by only the touch of your words.

I am affected by all and none. This silence speaks to me. And the loudness hurts. I am the fury in your eyes. I am the heartache in your bosom. I am that raw pain that eats away at you. Time and again I rise, some mercenary to the many; unable to stop my vengeance; my need to take revenge, to beat the rhythms of my own soul down.

I am anger. I am rectification. I am renewal. I am lust. I am all this and more. And they merge and spin inside of me, claiming their take, and taking more than was offered. I eat of myself, devouring the agony.

If only I could find a way to balance the esteem of you with the esteem of my own being. If only I could find a way to stop the pain you feed me. Your naked trembling fear. To unchain the leash that takes me to the dark side of my own moon.

How I long to be the sun, the perfect sun shining overhead; and then with one touch, without consequence, to set free with flame this yearning for rescue.

~ Sam 3/20/13