Sometimes the hardest thing about blogging is the readers’ comments.
When I read comments, in fact when I read any words, each word resonates energetically with me.
For the most part, some 99.5 percent of the comments I read on this site are supportive and kind. But there is always that half percent, that few that seem to rise above the rest, like serpents from the murky waters, and shatter what joy was carried with their jagged teeth and rugged scales of anger.
I can feel the anger in certain words. I can feel judgment, dismay, demise. I can feel jealousy, confusion, and mental clutter. I can feel some need to challenge, fight, or crush.
I have to remind myself that others’ words are not a reflection of me. I have to shake myself much like a dog, and flick away all the leech-like fear seeded in some comments.
I have to remember whomever writes words that are not beneficial to my spirit is in desperate need of hope and love. I have to remind myself that their pain is my pain. And the best I can do is to pray for the individual. To visualize the person finding support, clarity, and a release from whatever holds him or her prisoner.
One midday, beneath the shade of a leaning cypress tree, after the late-spring sea fog had lifted, I stared out to the crashing waves with a grave impassivity. In the past years, I’d grown deeply attached to the ocean side town. I believed in a sense we were one, the town and I, joined together in the same way the redwood trees unite their roots underground.
Aggrieved and spiraling with emotions like a blender on high-speed, I replayed Mother’s words, her promises; there would be new bedroom furniture and a private school, and a nice house. I could wear a school uniform like Jane.
Mother had strolled into my room twenty-minutes earlier with a confident air and found me absorbed in my sticker collection book, categorizing each sticker by theme. I was on the butterfly page. There were 33 butterflies—one more butterfly than fairies. Mother had a faraway look, a deep and distant gaze that made me think she was traveling with the angels in the sky or the dolphins in the sea. I knew innately from all my years with Mother that she was happy; and so I also knew she wasn’t going to tell me her boyfriend Ben was finally leaving; still, I held onto the hope, even though all the signs pointed in the opposite direction.
The King he coughed, and then hoarsely spout, “I’ve had quite the battle, of this no doubt.” He hovered there, in chamber room’s sheets, his face pale white, despite the heat. He stretched his neck, and cracked his knuckles, and adjusted his bedclothes with a string-like buckle.
I sat in the corner, unseen but there, my ears alert, my mind aware. I’d heard the story of Dragon V and how Noble King had battled thee. But now to see King living still, after all the tales, I shook with chill. And wondered too, if Dragon had left, or stood behind curtains with fiery breath.
I sneezed aloud, and heart sank low, would Dragon appear, and make me his foe?
“God Bless You, lad,” the King did say, and turned down his covers to reveal a tray, of turnips and broth, and chicken legs full, and desserts untouched, by this noble who ruled. “Can’t eat them; no want. Help yourself if you wish. Can’t even stand to look at the dish.” He adjusted his pillow, then fanned his full face, coughed up some more, before finding his place.
“Now, where was I?” he mumbled, his lips parched and dry, his skin lacking luster, the red in his eyes.
“Oh, yes, fine lad, listen, while I whisper a word, about the fierce Dragon, no doubt that you’ve heard.
I call him Dragon V, the v stands for venom;
his poison is hot, from the land of fierce demons.
At first Dragon whispers, and the fire is null,
still knight’s eyes gather tears, and do slightly swell.
But then Dragon breathes, and his flame rises swift,
and ghost enters the ears, and causes a rift.
Then there is burning, and acute subtle itch,
until comes the night, and ears ooze and they twitch.
This pain is rather meager, simple indeed,
compared to where Dragon next turns to feed.
He enters the head, and burns up so hot,
that knight cannot tell boot from his pot.
The Dragon’s heat strong, climbs fierce and then falls,
leaving King in his bedclothes all soaked in a ball.
Bed covers too, are wet with foul rain,
which must be the body weeping in pain.
This happens trice, the heat pattern clear,
three moons pass, with muddled thought and wetness severe,
Next, he takes hold, this Dragon mad,
and pounds at the whole head with his strong iron clad.
Dragon releases, after throb-filled days,
only to take harbor, in the lungs straight away.
Now comes the spit, the cough and the hack,
that starts at the ribs and stabs behind back.
Gasping and wheezing are familiar sounds now,
bringing yellow-yoke present, sunrise from sundown.
This lasts the longest, the spitting of yoke,
the catching of breath that resembles a choke.
So withered and wrung out, so weathered and worn,
tis the greatest of battles, of this I have sworn.”
The king took a breath then, and I could hear what he meant: How the Dragon still lived, for King’s breath was still spent.
I gathered my notary, my reeds and my ink, and thanked the King properly, by offering drink.
I sneezed then again, my face turning blue, I’d swallowed the dragon, of this I now knew.
The King gulped and slathered, his beard getting wet, and looked me all over, with green eyes sternly set.
“Now son,” he said, warmly, his grin rather tart, “There’s something to mention, before you depart.
Your sneeze, tis no warning, no bell to alarm; the sneeze will bring nothing to cause you V’s harm.”
He shook his head proudly, then spit yoke in his pot, fingered his mustache and made the ends taut.
He held out a finger, and gave it a whirl, after giving his mustache, one last final twirl.
He sat up very proud, his eyes starting to glisten, he beckoned me closer, and said, “Now, you listen!”
You scribe down my words, what I know to stand true: When battling dragons, a King never achoos!”
~~~~~
In this tale, I am the King and this is my Dragon V. Now on Day 16 of the battle. And I still haven’t sneezed!
She spent her day in the wilderness amongst the walnut orchards and the towering oak trees, playing in the fields of tall grass. She was friends with all creatures grand and small. Every part of life was fascinating. Her own skin soft and delightful. The pink of her dog’s nose poking through where the black had worn away, a wet treat. The ants she watched with fascination. The wind she breathed in to catch. And the sky was her endless dream.
Nothing was missing or out of place. Everything moved as ordained in a perfect circle of give and take. Every part fit into place to make a glorious time, much as the intricate makings of a clock. All moved to produce one. All moved continually, and changed, and came back again. Returning to the eyes of the beholder what always was.
This little girl, she loved to dance and be. She could sit for hours and play inside her imagination whilst amongst nature’s gifts. Her bounty was the fallen twigs beneath her feet, the pebbles in her pockets and the taste of nectar on her tongue. Love was all about her, especially in the song of birds and the dipping of dragonflies as they danced reflecting the light with their transparent wings.
If colors were her world then the spectrum was grand—a thousand rainbows intertwined to form hues uncommon to the adult eye; colors that danced their own symphony producing brilliant songs from voices of angelic creatures.
There wasn’t a want or need. Just the simplicity of moving as one with the rest that danced. She was as a caterpillar set free upon endless green, nibbling at the gifts before her.
Until the rain came.
With the rain caterpillar ceased and butterfly was born. Butterfly was lovely, detailed and sketched in nature’s beauty, and able to fly and reach heights previously unimaginable. However, now she could dance outside her realm, her place, escape what she once knew as the only existence.
From up above, her angle changed. Her world became smaller and larger, all at once. Things she knew not of before appeared, and visions, she once believed in, vanished all together. As she watched and flew higher, she began to see where she’d been was nothing but a patch, a broken shattered fragment that with enough distance simply disappeared from sight.
When she returned and touched down, everything was altered, as her new eyes could not, as hard as she tried, see the terrain the same. All was different. All tainted with logic and reason and this undaunted inquiry.
That which was once simply existence, now was struggle. That which was once simply peace, turned to question after question. Her own beauty, that she had never doubted before, or even considered, now faded with her thoughts. And how those thoughts twisted within the others, creating a band so thick the toughest warrior could not break.
And now there were warriors. There were enemies and fighters. There were people who spoke untruths and hurt. There were diamonds that were stolen, treasures destroyed, and secrets kept. She knew then that the butterfly world was not where she belonged. Though she was butterfly.
She longed to return to the land of caterpillar. She longed for her old eyes, her old ways, her happiness.
She spent her days searching for kindness, for the place that once existed inside of her that was pure and innocent, the emerald of hope and faith that others now seemed to pierce and stab so often that she’d had to hide this essence out of fear of destruction.
And so she hid, inside herself, in this place.
When she was teased and admonished, she hid.
When she was tortured with looks and words, she hid.
When she tried to be as others wanted and she still was not enough, she hid.
And all the time she hid, she cried and wept for this land she knew before, where the birds sang and she only heard their music, where the wind blew and she only felt the air.
Now, with everything came explanation and reason. Now, with everything came doubt. And here, in this land of butterflies, she wished nothing but to pluck off her own wings and wither, if only to return to a part of her own self that could not fly above and see.
She’d wished for death, like so many misplaced butterflies do. Not death from her own being, but death from the world about her. To black out her surroundings and apply a fresh coat of white and paint again, a new picture, the one from before the rain came.
But still she remained butterfly.
As butterfly, she attempted to rebuild a cocoon, so she could crawl inside and wake up transformed to the time before.
As butterfly, she attempted to fly so high so she could leave behind all that was below. As butterfly, she tried to protect herself in armor, to shield her from the coming arrows. As butterfly, she tried to smear herself in masks and makeup, to pretend.
She tried and tried to no avail, and remained but a butterfly broken and alone, who knew of this land of before, when all about the rest had seemingly forgotten.
Until the time came.
And she heard an echo from the depths of her. And whispers poured in as the dew and quenched her unyielding thirst. She was shown then the way to caterpillar land. She was shown then how to bring peace to the butterfly. She was given the secret, the promise: a ray of hope so slender and tender that only this butterfly could keep safe.
And she did, inside of her deep, carried the ray day and night through years. Until the time came, and she knew what to do.
And so, with the coming season, with her heart knowing, as the light called from within, she set to spinning her ray, set her thoughts to words, so the world would know of the caterpillars, of the butterfly, of how the journey of broken, was also a journey of hope.
And in her weaving, the light shined and shined so bright from within, that the other lost butterflies found a way to this little Sam. And soon there were so many butterflies collected, that their wings together moved to carry them. And they moved and moved together, at last returning back home to the land of caterpillar, to the place they remembered of innocence and love, to the place of unreason and truth, to the place they could dance again in the spectrum of light united in their beauty. In a place where everywhere they looked they saw a reflection of self, and in so seeing realized the butterfly, though lost, had been found.
And so they danced, because of the promise of who they were, because of the place inside they kept all these years, they danced. And slowly they let go. Slowly the armor came off.
And slowly the light of the caterpillar shone through each of them so brilliantly that the world began to see that butterflies don’t have to let go of the caterpillar to fly.
Every day is a huge challenge for me; something that I seldom talk about or mention. Just getting out of bed takes a lot of effort. I don’t like to write about my pain and various physical “conditions,” as I am not my conditions, I am not an illness, and I am definitely not pain. I don’t like to talk about everything I must do to keep myself moving. But I am. Mainly because I was on the couch all day and had a heck of a lot of time to process. Plus, a little boring never hurt anyone.
There isn’t a moment I don’t feel something askew in my body. Because I am so sensitive, even a hair in my face can irritate me, even cause a rash. My own hair! My nose constantly itches. Sometimes my eyes. All my joints seem to hurt. But I can’t tell if it’s my joints, my muscles, or something else. And neither can the doctors. Right now the couch hurts my bottom. The laptop desk hurts my thighs. And at least ten different areas in my body are either in pain or irritated or itching.
I’ve been diagnosed with at least ten syndromes or illnesses. Nothing is a definite. Nothing truly proven beyond a long list of symptoms. At this point I could have inherited something, suffer as a result of multiple injuries/accidents, been prone to pain from stress or environmental toxins, or made everything up in my head.
Sometimes I like to think everything is in my head. At least I have some control that way. The older I get, the more I realize my whole reality is in my head, anyhow. All my thoughts control my mood. My eyes what I see. My ears what I hear. My brain what I take in, recall, process, judge. I’m sure my spirit plays some part, as well as my second-brain (the intestines), but seriously, so much goes on in my head to begin with.
There are lots of things I have to do in order to function. If I skip any of them, or if something is off, I am pretty much certainly going to be in bed or on the couch for a large period of time. Each day I wake up, I feel like I am preparing for battle: a battle just to survive the day without collapsing in great fatigue and pain.
Here is a list I keep in mind to help manage my days.
1) Shower; something about the hot water on my body rejuvenates me and reduces my muscle pain. If I don’t shower I feel extra greasy and itchy. If I don’t shower, I feel increased pain all day. Problem is, sometimes I’m too tired or fatigued to even think about showering. I have to force myself to. I don’t like showers. They are boring.
2) Pig hormone; for my hypothyroid I have to take a natural pig hormone. I haven’t eaten pork since sixth grade (my decision). So at first the thought of ingesting any part of a pig, felt odd, but then I figured it was the pigs way of paying me back. Pig karma, for not eating them for so long. Trouble is this hormone gives me the skin of a fifteen year old. I appreciate the healthy glow, but the sticky oil and chin breakouts, I could do without. Seems I’ll take longer to get all wrinkly, though. So, I guess that’s a bonus, even though my skin is worse than my teenage sons’.
3) Various supplements; if I go too long without any supplement, I feel it somehow. However, one benefit of being me is that I’m very sensitive to what is happening in my body. In September, it will be two years since I’ve had a cold or flu bug. I can feel a cold coming on. I feel it in every joint in my body, like I’ve been poisoned. Feel it before most people do. And when I do, I load up on Vitamin C and Vitamin D. So far I’ve managed to keep from getting sick. Fingers crossed and knocking on wood. I can tell things about me, too. If my eye sight is growing worse, I need more magnesium. If my leg twitches, I need my multivitamin. If I am tired, I need to take my iron and eat a little fish.
4) Diet; it’s easier for me to list what I can eat, than what I cannot. I can eat nuts, fish, vegetables, and fruit. Everything else gives me some reaction. Chocolate gives me rashes and makes me break out. Dairy gives me rashes. Wheat makes me bloated and depressed. Artificial anything gives me stomach issues. Most foods in general cause me extreme fatigue immediately after eating. If I am going to eat, I usually have a small portion of salad. Grains are going to make me tired. Wine hurts the salivary glands in my neck. Beer gives me a stomach ache. I am definitely high-maintenance. If I am not careful, after a meal, I will be in pain and fatigued, and have to take a nap.
5) Liquid; I need to have lots of water and green tea. The green tea gives me the boost to function in the morning and alleviates my chronic fatigue. Green tea also lessens my pain. If I have coffee I go into a spastic mode. If I want to clean I have a quarter cup of coffee in the morning. If I drink coffee I will be up past midnight and have lots of cool ideas, or what seem to be cool ideas, but are really elaborated ramblings that don’t prove much of a point. Coffee makes me paranoid, worried, and stressed. Oh, and agitated.
6) Exercise and movement; I have to move. Once I sit down, it is very hard for me to get back up. Especially if I combine eating in the morning with sitting on the couch. And forget it if I eat, sit on the couch, and skip my shower—I’m pretty much down for the count on those days. If I walk my serotonin levels increase and my mood is better. Everything is brighter. If I walk far, lately five to seven miles in a day, it is easier for me to sleep deeply at night. Fatigue sets in badly about 3:00 pm, so if I can walk then, sometimes a second walk, I can keep from sliding into the unable-to-move zone.
7) Weather; if there is a lot of barometric pressure from clouds then I have a hard time moving. Also, if it is chilly, my bones ache. At least it feels like my bones ache. On cloudy days (most days in Washington) I need to make sure I take care of myself; if I do not, I will not function. On cold days the far infrared sauna is helpful. But sometimes I am too fatigued to go into the sauna. The thought of having to undress, shower, and then dress again seems overwhelming. I worry about how I will keep up my walking with the end of summer coming. I have to find ways to exercise. We have an indoor treadmill which I avoid. And a stationary bike I haven’t made friends with, either.
8) Sleep; if I do not get enough sleep, I will have increased pain and fatigue two days following. If my sleep is interrupted and/or not restful, the next days will be harder for me to move. I am sensitive at night. I need a special mattress for my body to feel comfortable, must wear long sleeves and long pants, regardless of the weather, or I itch, and need to use earplugs. All noises bother me. Particularly banging, high pitched noise, the ticking of clocks, water of a fish tank, voices, television, and snoring.
9) Stress; if my stress level is medium to high, I will have instant pain. People’s moods affect my pain. Screaming, whining, loud noises, yelling, fighting, and the like increase my pain. Unwelcomed news increases my stress. Lies are a big trigger for me.
10) Thoughts; if something is out of the ordinary, if plans get changed suddenly, if I notice something on someone’s body that is out of the ordinary, then my thoughts may overwhelm me to the point of exhaustion. My thoughts can trigger sudden onset of pain. When something I am looking forward to is suddenly canceled I am fine. But when something happens I wasn’t expecting, no matter how pleasant, I can get overwhelmed. Skin “issues” are a big trigger for me. I have an odd rash around my eye. I worried and fretted today about my eye, and collapsed on the couch from fatigue. I catastrophize in my mind, thinking of worse case scenarios. My sons have mosquito bites all over them from one hungry house bug we’ve yet to catch. And my chin is breaking out from that pig hormone. All this increases my thoughts.
11) PMS; oh yes, the lovely word. The five days of hell for me. All my pain increases, fatigue doubles, negative thoughts increase, and basically I think the whole world hates me. My face and stomach swell up and I look and feel like the Pillsbury Dough Boy. This makes it harder for me to leave the house and exercise, which can lead to further fatigue and bring on depression. You’ll notice I do not post photos of me during this time. I also get cravings for chocolate! Not something I should really be eating.
12) Chemicals; I have to avoid all chemicals in products and makeups. Thus the frizzy hair and minimal makeup. I get instant pain from inhaling chemicals in all forms. I have to avoid places with new carpet, paint, flooring, or other odors. Plastic smells are the worse.
13) Information; I have to be careful what I read or watch. News or a film can deeply affect my mood, which triggers…you guessed it…my pain. People close to me have learned not to share sad news that doesn’t directly affect me. Some visuals I’ll never be able to get out of my mind.
14) Noise; certain genres of music physically hurt my body. Dogs barking hurts my ears. Loud cars, especially motorcycles hurt. Too many people talking all at once, large gatherings with lots of conversations at the same time, all cause me trouble. Noise can affect me for the entire day, and may mean I have to stay inside the next day to recuperate.
15) People; people affect me in all sorts of ways: their mood, their appearance, their smell, their mannerisms, voice, attitude, energy-level, facial expressions, spoken words. If my feelings get hurt, which happens more times than I’d care to ever admit, then I typically will feel pain somewhere in my body. If a person is sick, I might get phantom symptoms, even if I don’t know they are sick. If a person is happy or sad, I might start to feel that same way.
16) Dread; if I am dreading something, particularly medical news, doctor appointments, or an upcoming outing, I will have trouble concentrating and relaxing. I will loop in my mind and spin in my thoughts. This will cause tension in my body, which leads to other problems. I have to get blood tests done about every six months to check my vitamin, protein, iron, and hormone levels. The thought of annual or biannual appointments for anything, sets me into a mini-panic.
So that’s my boring list.
This is boring.
This is pain.
Great movie Sliding Doors to watch when you are stuck on a couch!
And dang if that mosquito didn’t just buzz in my ear!!!
Everyday Asperger's 