Existing with the horrors and invisibility of M.E. I am a skeptic, non-theist, artist/writer and horribly ill. Literary journal, "The Closet Door" is seeking contributions -. short fiction, non-fiction, poetry and visual art, for and about, invisibility - illnesses, LGBT, atheism/secularism - anything about stepping out of the closet and giving yourself a voice. Send work to: theclosetdoorpress@gmail.com. Soon to be a website accepting original music and soundscapes.
Distant fence lines shimmering through waves snaking across the prairies. Power and telephone lines buzzing tales of all the neighbors' secrets. You and I tracking gophers and other unsuspecting rodents squirting water down their front doors thinking weren't we smart. Poking through the reeds for frogs and other hapless slimy creatures.
Stripped to our shorts
plunging through murky surface
algae and water beetles
scurrying to escape
our voices muffled
by the muzzle of heat.
Distant rumblings
lead sky against
tumultuous golden horizon.
A splat of mucky weed smacks
against my face
and subsequent chortles from
across the pond
instigating war!
Counting seconds between
bolts and blasts
lightening and thunder
until they became simultaneous and
rain beat upon us
from above
and below
a flash across the expanse then your arms jolting upwards out of the water like fence posts and for a moment you walked on water like Jesus.
Then you stepped out of your body
and my tongue froze to my mind and never uttered a word again.
Yes, they were pretty sweet babes once - all four of them. I think they despise me for being an "other"..... so it goes. Happy Mother's Day. Mom! Every picture of my little family has that tired, worn-out-looking girl/woman in it though. I don't know who she is or why she appears like an apparition in all of my photos! Kids are gone and have their own offspring.... but she's still there... just more solitary, holding shadows of her babes.
From the name game - "Deanna Bo-bana"...
(in case you can't figure this out.....)
Deer Mom We Love You Very Much. U Make R Home A Very Special Place 2 Bee.
My lovely second born, came to me
in the silent stillness of a morning, quiet, no lights, no monitors, in an empty hallway.... he knew me.
He understood everything. He was born
knowing because I sang to him, played to
him. He even arrived with my memories intact. I was so young and so little from
being so sick. But then he came to me, he never cried, even when those sores were all over
his tiny body and I fixed him up without a single fuss from him. I loved that boy! He made me
laugh, smile, cry with joy, cry because I knew life would not be easy for one so passionate, so knowing, so real. This boy, this man.
I was never well enough to teach him music
so he taught himself.
I beg him to believe
in himself. He is so strong, so beautiful, and has
oh, so much to give the entire world... yet his own young son is enough for him. Knovah, you are not only enough, you are everything to him, my Hamie. This man, your daddy, was once my little boy. Love him. Know him. Believe him. Always. He is always right, not in an authoritarian way, but in the quiet, lovely, painless way he was born to me, the mother who happened to give birth to him, and then loved him with all her inner, quiet might.
These beautiful baby boys began long ago, not with me, but with the seed of their fathers. I only gave birth to one, but loved them all.
So, World, just listen.... Do you hear what I have always heard???
And he has to walk away from me to walk beside you
Not better. Worse. What am I not getting??? Dr. Bev has reserved a quiet room with comfy couches where I can sleep for a couple of hours before our 1 - 2 hour session. But then this chronic low grade UTI turned acute and has possibly gone into my kidneys. No amount of morphine is decreasing the leg and abdominal pain. So once again, even though just a week ago or so, I was off my meds, I'm knocking myself out with sleep-in-a-pill. That's all that helps. And, it was the long weekend. No walk-in clinics out here, and too far to drive into Calgary. So here I lay myself to, er, not sleep, moaning my favorite mantra, "ohmygodohmygodohmygodohmygodohmygodohmygod......". It gives me something to do. So.... here comes an onslaught of more old poetry.....
possession
I could open up your skin peel it from the bones like magic it would fall away and I would cut away the flesh or burn it off and there would be all your bones stock and sturdy and I would stand above you with a stick attached to strings attached to each bone and I could make you dance or kneel before me or lie prostrate on holy ground or run from me but I would always be there with the stick and strings to reel you back in and I could take your bones apart and reconstruct them to resemble a Neanderthal or infant reptile and I could make the whole world believe I'd dug you up from beneath a coal-smeared rock near Drumheller and I could even put your bones in a box and bury them behind a wall then patch it up with bricks and mortar and monalisa posters OR I could just leave you alone there where you sit across from me and I could watch you manipulate your own strings or construct your own primordial ancestry that nobody but me would believe and I could follow you into the murmuring fields and watch you open up your arms and rise into the air and fly away then back to me that's what I could do
They were like the Imp's shattered looking glass which made all good things appear evil.
I have traveled to places
they can't imagine to plead for its excision but there it remains knifing deeper into who I am - - who I was - I wish to pull the words
from these unspoken glances we exchange. I wish to say, "Say it!" but can't expect the stillborn to give up their wisdom.
Can you hear it? Can you breathe it? It hurts it hurts it hurts! But there are no words no metaphors for what is unrecognized and inarticulate. Still, I wish to say it about the pain for its own sake to give it power because sometimes pain is a beautiful thing when it's all you've got.
(Well.... no, not me, not yet anyway.... So, in the meantime, you're going to get a bunch of old poetry, and a photo of my momma the moment she left)
Miss you, Momma, I love you, more, I think, than you ever knew... and despite, or more probably, because, of what you did to me. It just doesn't matter.
I should never have allowed myself to be on my feet, even with a cane - using a cane or crutches just hurts your arms and shoulders, and doesn't really take the pressure off your legs and back. "Carry a camping stool!" says Dr. Bev.
I joined a Facebook group here in Bragg Creek, asking for help, not expecting any responses. So I was astounded to find a couple dozen offers waiting for me when I got home. Let's see if they're serious.... usually when I ask for help, everyone disappears in a hurry and never comes back....
I need to talk more about the consequences and aftermath of the rape.... back to the "Rape is Rape is Rape: A Love Story".... but I still have much processing to do. If anyone wants to add something, I would love to have guest posts. Leave me more comments! Poetry, personal stories, art, music, whatever is on your mind.... tastefully and truthfully.
UPDATE! Yes! Thank you to Lori for picking up my sleep study kit and returning it to the Foothills Hospital today - despite having the big dogs jump up on her! And more recently, thanks Marina for picking up and dropping off my prescriptions, despite your very recent medical/health stuff. You gals are awesome!
The things I heard them say hurt and I would go upstairs and sit and be quiet. The things I didn't hear them say hurt even more than I can say - so much that I have to go out and be among other people who have lives and hurt as much as I do or more, but don't know it. But some do - and it is for you I write there is no karmic re-alignment no vengeance no schadenfreude and all you need to do is be your loving Self and be kind to someone you don't know because that doesn't hurt.
(Cary killed himself within a few days of that phone call. I just didn't find out about it until a couple of months later. But that's another story... "Rape is Rape is Rape: A Love Story", a tale I will tell till it stops playing in my mind's eye, and that could be awhile...)
So it goes....
"Poo-tee-weet" sings the bird
I wouldn't mind knowing who my readers/watchers/listeners are in France. There are some in Australia, Austria, India, Latvia, and a few other countries. Send me a few comments. I realize this is a very personal blog/vlog, so thank you for being here. Really. But, is it because you have been struck with the same sort of dis-ease? Or is it one of those instances where something is so horrible that you can't help but look?? What is it that captures interest? I only decided to do this because I thought I was going to get well. I thought it would be good for me. I'm not getting well though. Mind you, I've only had about three, maybe four, sessions with Dr. Tompkins (this time) - The Burke Pain Institute - and the reason you probably can't find much about her online is because she is so busy, AND she's got to monitor her own health as well and doesn't take chances, like the day I went in smelling like incense from an incense burner that had been packed for years in one of my boxes. I couldn't smell it. She could. That scared me, because if she's that sensitive, but knows what it is, how am I going to know what's doing this to me?? She let me stay for 10 minutes that day. But she has to. I seem to be worse here. Dog hair? I don't know. Altitude? I just don't think I'm supposed to be alive. I'm a mistake. Let's go with the "Train" story. Yes, I'm sticking to that story (back up a few posts). me at age 10 crossing the tracks
Huh??? Where am I?? Where is everybody??? I don't feel well....
I don't have to tell you I'm not very computer savvy - can't hide that fact very well. But also, I keep running us out of Internet.... I didn't know Internet wasn't unlimited everywhere in the Universe. So I haven't been able to load all the videos of me crying, throwing up, sleeping, not sleeping, and mostly, just lying here. Uh huh, I lead a totally indulgent, enthusiastic, rip-roaring, hair-raising dramatic life, I know... Plus, my heading has disappeared so I have to go in search of it. Also, I do need to back-track and fix some of the first posts that came out all mangled and in random un-patterns that pile onto each other like a train wreck. In the meantime, July 12 is when we get Internet again.... Didn't make it to my session with Dr. Bev today which is not good because I need everything I can get and was going to start recording our time together connecting the dots. She retires in a year and with all the data she has collected throughout her career, she'll be writing about this bizarre, misunderstood dis-ease. So please look for her - Dr. Beverly Tompkins of the Burke Pain Institute. This woman has done more for people with M.E. than anyone. She is brilliant, kind, empathetic and patiently explains things in a manner even those of us with moldy brains can comprehend. Yesterday I saw the local gp. She had little, or no, cognizance of M.E. and its symptoms - like PAIN.... Um, sorry Lady Doctor, the pain experienced under the M.E. umbrella is inexplicable, but all too real. And the umbrella has a bunch of great big holes in it though which all kinds of bizarre, inexplicable symptoms fall. That's okay. Very few physicians are M.E. literate because it's too much work to study, so they focus on the maladies they read about in medical school, maladies that are improvable, curable or terminal. M.E. can be all of those adjectives or none of them. Dr. Bev says I'll live to be 102 and from here on, it is going to be a riot! I read Ray Kurzweil though, and his live-forever-downloading-consciousness-into-synthetic-bodies hypothesis. Go Kurzweil! Transcendent Man (watch on YouTube) was a decent documentary, so..... maybe? Also, I was going to pick up a used C-PAP, advertised on Kijiji. So, People with C-PAP for sale, I sincerely apologize for being unable to get there! I'll be back when I'm not so nauseous....
Sunday, June 19, 2016
It has become unbearable again. I track everything - at least I think I do - but then I find blank charts and graphs, days gone missing, I don't remember. Usually I have to ask the people around me how I'm doing because I won't remember, especially in the throes of this kind of pain, the nausea, can barely see. But now I'm alone. Everyone has gone away. No one wants to hang around This. Except for my awesome sisters. But they are in Washington. I am here. I want to unzip myself and step out. But I don't think there is anything left of "me". My entire right side is all gimped up from the year at David's hoarding house. But that kind of pain is real.... I mean it's "normal" pain. A strained muscle, a sore shoulder from leaning on that side for a year. Or a decade. Or three decades. I don't know anymore. I never know what day it is. I miss appointments because I lost a whole month. And somehow I keep breathing. What's ironic is that it is my breathing that could be the whole problem. I've always said, felt, that I'm not supposed to be here. It's like living in another dimension where you can see what's going on in that other dimension where everyone seems to be living their lives, but you can't find a way in. Or a way out. Trapped inside my body. That's dualistic. Am I my body? Yes. The gods are gone. I could invent one, like most of the world has done. But I'd still know better. Sometimes I miss that feeling - I called it "Divine", knowing it wasn't some "God" with a capital "G", but Something, with a capital "S". It bothers me that I don't know what "It" is - also a capital "I". I dream that I can just fly around the universe, float through nebulae, alight on the makings of a tiny planet, then off to watch the Big Bang happen, also capital "B"s. Everything is in quotation marks now. The "Universe", capital "U", "Reality", "You", "Me", "The"... I miss meditating and feeling the rush of the moment when you join that "Divine" even though I know it's just the pineal gland, my brain, neurons, trillions of synapses, electricity. Dr. Bev tells me she has some bad news and I immediately think she's going to tell me I'm a lost cause, "past the point of no return" as she wrote in her portion of my application for AISH. But she writes things like that because she's had this, she still does, but she knows now how to fix it, she knows her own limits. And she knows that this is the worst dis-ease, partly because of its invisibility, and partly because those of us who have it, are bed bound. Nobody sees us. But it's not that. She's not sending me away because I'm the one patient out of two thousand who hasn't progressed, in fact, has gotten so much worse. No, it's not that. In fact, to me this is good news - that my sleep study data are so bad that she and the doctor at RANA, the respiratory clinic here in Calgary, are trying to get me in on an emergency basis at the Foothills Hospital. This is no emergency. I'm 52 years old. I should have died of crib death. In 1963 it would have been an emergency. But I didn't. I kept breathing and stopping and breathing and stopping. I thought I'd overcome the survival instinct as my favorite friend once said. But I guess not. So I'll fight this one last time. Dr. Bev tells me I'll need a Bi-PAP, which breathes for you, rather than the C-PAP - positive air pressure, which just blows air at your nostrils till you can't help but take a breath. Am I dead? Is this Deanna's ladder? Is the intense pressure I feel just the earth pressed in around me because I've been dead and buried, because I did die of SIDS? Or the train. I need to write that story. It would be a fun one to tell. Ten years old, riding the bus home, hopping off the bus and waiting for the four o'clock train so I could wave at the man in the caboose. But that day, when I heard the whistle, instead of raising my arms and waving them in the air as the man in the caboose pulled the whistle again, that day I panicked and ran. I ran through the three rows of trees where I'd made paths, built forts, hung upside down from tree branches, I ran all the way to the house, shaking. I ran up the narrow winding staircase and laid on my bed. I didn't know how to tell my mother. I didn't know what to tell her because I didn't know what was wrong, just that it was wrong. So I told her my stomach hurt. That was the beginning. Forty-two years later I still don't know how to describe it, other than a bombardment of horrible, endless, physical sensation. So I like to think I died that day, that I was hit by the train and ever since, I've been walking around, lying around, dazed, confused, still feeling the impact of the train. Sometimes I have to think that way. It's romantic. Right? I feel like a jack hammer right now, the vibrations jolting this biologic machine that I am. I'll be back. I have to knock myself out for awhile. If I don't, I know I'll just swallow all these pills, every last one of them and then go for a walk, lie down and go to sleep forever. I've heard there's a grizzly around. It killed the neighbor's watch donkey. And cougars, always those beautiful, black, giant cats. Coyotes too. And when they've had their fill of me, the ravens, hawks, carnivorous birds, can finish me off. One day someone might stumble over my skull, but not for a long time. So, I need to knock myself out now. I'll feel better when I wake.... I think, I hope....
Pain has an element of blank - It cannot recollect when it began or if there were a time when it was not. It has no future, but itself. Its infinite realm contains its past, enlightenment to perceive New Periods of Pain. ~ Emily Dickinson (from "Bartleby.com" - I'm sure I'll be writing about my friend, Bartleby soon too. He's just awesome!) June 12 2016 I keep running us out of internet usage out here so I haven't been able to post. I had my "first" (first, this time, 2016, and final attempt) session with Dr. Bev. My own gp in Edmonton didn't bother to tell me I had apnea. I had to ask her for the requisition for the sleep study. I also had the sense to tell the sleep specialist to send any data to Dr. Bev, who says it's one of the worst cases she's seen, especially since I'm not big and I don't snore - and I also stop breathing while I'm awake. I just forget. Once in awhile I'll realize at the bottom of an exhalation that forgot to inhale too, and probably should before I pass out. She also has me checking my blood sugar levels every 15 minutes for 3 or 4 hours, food and no food. I can't see a pattern yet, but she will. Why, for instance, did I have a glucose level of 11.9 in the morning before eating? And why, after eating, did it go down to 6.9? This dis-ease isn't making sense to me yet. It will. If only I had stuck with it when I first saw her in 1998 at age 34! Dammit! But I had a husband and three kids to care for, a farm, and a Bed & Breakfast to keep in business. I thought my husband was supportive, only because he patted me on the bottom a lot and said "nice butt!" or "Mmmm... I love you!" Or he'd grab my breasts and say the "mmmm I LOVE YOU!" thing. I always went with him to his medical appointments for his diabetes. He never went with me. He doesn't know who Dr. Bev is. Near the end, I went with him to Edmonton (a traumatic event for me, being in a moving vehicle for more than six hours in one day). There were about ten people there, all diabetic who were supposedly the sickest, needing to go on the pump to gain better control. They were sitting around the table having coffee and Digestives, talking about work, family, and life with diabetes, while I was lying on the floor, in pain, desperate for sleep. But I hurt too much to sleep. Also, it isn't socially acceptable to lie on the floor, unless you're a toddler. But I was 39 then. I still lie on floors when there's nowhere else to lie down. I'm 52 now. And that much worse.
I guess my point is, I had no support whatsoever. In fact, I had lots of opposition from my in-laws. Julie especially, felt it her duty to let me know one morning, after I'd lain on the bathroom floor all night trying not to vomit, and was sitting at my beautiful, brightly-toned piano (playing HYMNS for pete'ssake!) that they were very aware that I had anorexia and they were praying for me. Yeh, thanks, Julie. Actually, among many other things, I have leaky gut, so I'm basically allergic to everything and food makes me feel like I've been poisoned, because basically, I have been poisoned with unrecognizable particles of food roaming about outside the intestinal walls after seeping through the "leaks" of a hyper-permeable gut. So my immune system is going after all those particles, leaving me painfully exhausted, feeling like I'm allergic to my own skin. How I wish I could just unzip myself - all of me - and step out. My sister Meryl offered to carry my head around when I get the rest of my body amputated. She would put me up high where I could watch her in her "Ms. Mechanic" shop. But eventually it would be in my head anyway, as it is now. It feels like my face is being pulled, torn off, very slowly. My eyes burn. Apparently, even breathing is too much of a chore now. BUT, what if the C-PAP works. I got Ched on one because I would lie there beside him, wide awake, and count the seconds between breaths. But Ched has a rather large paunch and he snores. I tried out his C-PAP once, just for an afternoon nap, and couldn't believe how awake and clear I felt after that nap! Yet... don't forget... we are "fearfully and wonderfully made", and if you don't want to believe in the gods anymore, and prefer the intelligent design myth... sorry, none of this dis-ease is intelligent in any way.
I looked like this, so people were nicer to me. As long as they didn't find out I couldn't do anything but lie around. (Sorry, Baba, I don't know who would have cut you out of this shot). And, I had all my teeth then too. Sjogren's dries you up everywhere, so your teeth crack and fall out because the enzymes in your saliva aren't there to protect them. It dries up all your visceral organs so they shrivel up and HURT! "Dries you up" sounds kind of innocuous, right? Uh uh.... If I don't keep gum or mints in my mouth 24/7, my my tongue adheres - or rather - glues itself to the palate and I have to sip water slowly to unlock it. That too doesn't sound like a big deal, but it is. Ugh, it really is! When I think of a means to describe it, I will.Lupus wrecks your skin and any other organs it affects. I think mine is confined to my skin - ugly rashes on my arms and legs. The typical "butterfly" rash appeared when I was 26. My eldest son started getting sick when he was 26. Benji is in the genius caliber, so when his brain started going mushy, that was, and is, simply unacceptable. He has found ways to manage it better than I have though. My second son has never been well, and my heart hurts for him. My daughter might be okay because she has her dad's genes. The boys' dad just had a kidney transplant, but we're skeptical. Were his kidneys really failing and now he feels better after the transplant? Or, is it the cocktail of immune suppressant drugs keeping the inflammation at bay? Were the four of us exposed to something? Or, do I really have Lyme, which can be transmitted in utero. And I'm not sure if it has ever been proven that Lyme is also sexually transmitted. I did pull a tick from under my skin at age 17. It had been living there for several days with me picking at it thinking it was a pimple... with legs. And, if this is Lyme, then that tick got married, had babies who set up an entire colony, but the spirochetes form themselves into cysts where they can't be tracked. Sneaky little bastards! I would read up a lot more on Lyme disease if my brain worked. But it doesn't.
Myth # 1 Introverts don't like to talk. This is not true! Introverts just don't talk unless they have something to say. They hate small talk ["Hate" is too strong of a word. I'm going to say "very much dislike"]. Get an introvert talking about something they are interested in, and they won't shut up for days. [Yep, my thing is science and non-theism, although the non-theism thing is kind of a topic that is no longer that interesting. But it does mean I can have a real conversation with someone of like mind]. Myth #2 Introverts are shy. Shyness has nothing to do with being an introvert. Introverts are not necessarily afraid of people. What they need is a reason to interact. They don't interact for the sake of interacting. If you want to talk to an introvert, just start talking. Don't worry about being polite. Myth #3 Introverts are rude. Introverts often don't see a reason for beating around the bush with social pleasantries. They want everyone to just be real and honest. Unfortunately, this is not acceptable in most settings, so introverts can feel a lot of pressure to fit in, which they find exhausting (SO exhausting!) Myth #4 Introverts don't like people. On the contrary, introverts intensely value the few friends they have. They can count their close friends on one hand. If you are lucky enough for an introvert to consider you a friend, you probably have a loyal ally for life [yep!]. Once you have earned their respect as being a person of substance, you're in! Myth #5 Introverts don't like to go out in public. Nonsense! Introverts just don't like to go out in public FOR AS LONG as other folks. They also like to avoid the complications that are involved in public activities. They take in data and experiences very quickly, and as a result, don't need to be there for long to "get it". They're ready to go home, recharge, and process it all. In fact, recharging is absolutely crucial for introverts. Myth #6 Introverts always want to be alone. Introverts are perfectly comfortable with their own thoughts. They think a lot. They daydream. They like to have problems to work on, puzzles to solve. But they can also get incredibly lonely if they don't have anyone to share their discoveries with [another big YEP!]. They crave an authentic and sincere connection with ONE PERSON at a time. Myth #7 Introverts are weird. Introverts are often individualists. They don't follow the crowd. They'd prefer to be valued for their novel ways of living. They think for themselves and because of that, they often challenge the norm. They don't make most decisions based on what is popular or trendy. Myth #8 Introverts are aloof nerds. Introverts are people who primarily look inward, paying close attention to their thoughts and emotions. It's not that they are incapable of paying attention to what is going on around them, it's just that their inner world is much more stimulating and rewarding to them. [But we ARE nerds, and proud of it!] Myth #9 Introverts don't know how to relax and have fun. Introverts typically relax at home or in nature, not in busy public places. Introverts are not thrill seekers and adrenaline junkies. If there is too much talking and noise going on, they shut down. Their brains are too sensitive to the neurotransmitter called Dopamine. Introverts and extroverts have different dominant neuro-pathways. Just look it up! Myth #10 Introverts can fix themselves and become extroverts. Introverts cannot "fix themselves" [and why would they want to?] and deserve respect for their natural temperament and contributions to the human race. In fact, one study (Silverman, 1986) showed that the percentage of introverts increases with IQ.
"...Whatever pain achieves, it achieves in part through its unsharability and ensures this unsharability through its resistance to language. 'English', writes Virginia Woolf, 'which can express the thoughts of Hamlet and the tragedy of Lear has no words for the shiver or the headache... The merest schoolgirl when she falls in love has Shakespeare or Keats to speak her mind for her, but let a sufferer try to describe pain in his head to a doctor and language at once runs dry.' True of the headache, Woolf's account is of course more radically true of the severe and prolonged pain that may accompany cancer or burns or phantom limb or stroke [or M.E.], as well as of the severe and prolonged pain that may occur unaccompanied by any nameable disease. Physical pain does not simply resist language but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned... "...for physical pain - unlike any other state of consciousness - has no referential content. It is not of or for anything. It is precisely because it takes no object that it, more than any other phenomenon, resists objectification in language... "...the conclusion that physicians do not trust (hence, hear) the human voice, that they in effect perceive the voice of the patient as an 'unreliable narrator' of bodily events, a voice which must be bypassed as quickly as possible so that they can get around and behind it to the physical events themselves [blood work, CT, etc]. But if the only external sign of the felt-experience of pain is the patient's verbal report, then to bypass the voice is to bypass the bodily event, to bypass the patient, to bypass the person in pain..." Elaine Scarry, The Body in Pain, 1985