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.
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
I thought I'd let some other people talk about M.E. When I watch these, I'm thinking, "only 4 years? 6 years? For me it's been over 40 years. Why don't I commit suicide? I keep thinking, "maybe tomorrow I'll feel better". It's always tomorrow. Tomorrow I'm going to get done what I didn't get to today. Tomorrow I'll feel like going to town. Tomorrow I'll finish sewing that jacket that's been in my sewing bin for 11 years. But that kind of tomorrow never arrives. So I have to choose, moment by moment, to be happy right now, to stop trying to do anything at all, other than following Dr. Bev's instructions which are: lying on a heated blanket so that the heat goes directly into the spine, taking 3 bites of some kind of protein every hour, cool water, a fan, not getting up more than once an hour, and documenting everything. My brain is too foggy to connect the dots though. That's where Dr. Bev comes in. She can. She's had it. She rehabilitated herself by trial and error. When she was in medical school and got hit with M.E., her supervisors were not at all sympathetic. She spent a year in her mother's basement in the dark, sleeping, eating what her mother cooked and brought to her bedside. She got well enough to start a clinic, working up to six hours/day. But she regularly took breaks and laid down in another room. I first saw her 18 years ago. I'd already been sick for so long that I was kind of used to how bad I felt, being unable to stand for more than a couple of seconds, lying on the kitchen floor while dinner was cooking for my family, then after setting everything on the table, I'd go to bed. My in-laws were vicious. But it was my mother in law who, when I first met her, said I shouldn't be so tired. She eventually found Dr. Beverly Tompkins. That was more than 18 years ago. I wasn't able to get in to see her very often because we lived about 650 kilometres north. When I came away from a visit with her (a 2 - 3 hour session), I'd be so motivated it would increase my energy. But after I got home, still thinking my husband was supportive, all her methods just fell apart because I was too exhausted to eat, too exhausted and in too much pain from just ordinary farm life. I couldn't work..... but I worked harder at home than I would have if I'd had a career. My children's experience of having a mother is one of constant quiet in the house, a mother who even took the boards out of the wall in the loft and climbed inside just to have some quiet. And my family was quiet already!
When you fall prey to this bizarre illness at a young age, the prognosis is poor. If you "catch" it as an adult, quite often it disappears after a few months or years, which probably sounds pretty awful. But to me, a few years would have been a fun experience! Not 40 years, never remembering anything but being sick. My sisters are awesome. But there was a time when they didn't understand. They would suggest we drive to Mt Rainier, saying I could just sleep in the back seat. But being in a moving vehicle is one of the worst feelings ever! And sleep just wouldn't happen at all. In fact, I didn't realize what sleep was till I took my first sleeping pill - temazepam. I'd been lying in my bed all those years listening to the night time sounds, crickets, frogs, my dad snoring, then my husband snoring, kittens running, bouncing around on the floor downstairs, children sleep walking....
Enough for today. I thought I could make a lemon poppy seed cake..... now the ingredients are pretty much all over the kitchen and that's where they'll stay till someone either finishes it, or cleans up my mess. And since it's just me now, it'll be me doing either, or both, or neither\
Time to just lie here and watch some online tv.
Try to watch all six parts of this next
series of videos. It's very well done,
especially for a guy with M.E.
Human Canaries - click to see Dr. Majid Ali's book on The Canary and Chronic Fatigue. He has authored well over a dozen books on the subject. He told me when I was in his office in Denville, NJ, that the patients who had completely rehabilitated before 9/11 were the first to come back to see him after the attacks due to environmental factors, the chemicals unleashed, and stress even if they hadn't been directly affected. We are the human canaries. We feel the effects of an unnatural environment before anyone else. It's an epidemic and it's not going away.
And here to read about his book,
"September 11, 2005; the agony of
the victims of the September 11 Syndrome",
as well as several of his other books. He
also offers courses, daily videos, and you
can find his books fairly cheap. If you're
a patient of his, you just grab a stack as
you leave his office, or are sitting in a
comfy chair while getting a hydrogen
peroxide IV!
Why do you insist on searching for me in books? Not everything can be fixed by following the thousands of directions in which they will lure you. I’d like to be heard, believed. But now you have cupboards full of supplements that smell like the contents of a barn. and volumes of heal-thyself books (you don’t even have a system of ordering them in the bookshelf).
for some elusive beginning like the white house with the white picket fence. Ours was brown, painted the same drab color of the cabin white wouldn't have matched In fact, I painted it white once and He came home and sneered, wow That sure is ugly. No, it only happens when you make it happen, which I did but failed because I felt so sick that's why I tell you to do what you want to do and life's only rule is to be true to yourself which also means treating the multiverse, and everything in it, with dignity and respect, even the ones who you might think don't deserve it like me, perhaps It's true, we're not that different I hate my tv but it's all I have left when the pounding inside my body reverberates through the whole house, the whole neighborhood, the whole of my universe, and all that matters is having gum so the taste in my mouth won't make me sick during the night.. And why would I, loving you, want you to feel that? We're only as many worlds apart as we create. For me, I have no worlds left Here I am Naked The Empress in her new clothes. But where are you? It's not so bad, you know, being an Empress. And madness is a stable, decent place to be. You might like it After all...
Click the title of this post to go to The Unbelievers homepage.
I find the film slightly disappointing only because there is very little new footage or information for me personally. Lawrence Krauss and his scientist buddies have made science cool (mostly by the shoes Krauss wears.... right??? I'm right, huh...)! But the entire film is just so encouraging as far as seeing science lead the way in leaps and bounds. The central theme in this film is that religion doesn't need any help from anyone to render it obsolete. As we educate ourselves - and nobody needs a formal education for this - science has just become so COOL because it is completely relevant to our modern lives that religions have nowhere to go but out! I'm a scientist/science video junkie, so if you don't lap up every science video that comes out like I do, watch the film. It's really worth it. These guys are goofy too! They have demonstrated to the world that understanding our natural world is not only necessary, but compelling, fun and oh, sooooo sexy!
Seeee???
*sings* AWESOME!
Check out this video of some of my favorite nerds, basically having a conversation before thousands of people in the audience, about how an understanding of basic science will liberate and excite you.
Sunday, April 3, 2016
Summer, 2014 - the final year of Deanna's Stagnant Life - so stagnant that I named my laptop "My Life" - forgetting that at the end of the day, as I sign out, a screen would pop up asking me if I wanted to "turn off My Life". I've been tempted. I mean, I've read Derek Humphry's "Final Exit". Humphry founded "The Hemlock Society / End of Life Choices". Let's talk about that later on... Summer, 2014, I was raped by someone I thought was a friend. He was a friend. He was. I have to loop that together in my mind somehow. It was an angry rape, vengeful, hateful, fueled by a need for a pathological power, instilled by generations of a patriarchal religiosity. I still don't know what prompted him to do that, to think I'd be okay with it. Not that's there's ever a reason to rape someone. But it was the rage in him that sometimes gets me tearful because it didn't have to be that way. I just didn't know him. I knew a 16 year old boy, not a 51 year old man with tons of religious baggage. But I'm picking up the pieces, gluing what I can back together, but mostly moving on, still trying, hoping to get better. But once the teapot has been broken, you can glue it together and it might even be functional, but it will never be as good as it was before all the cracks. My common law spouse, "ChL", kicked me out because he chose to believe a serial rapist rather than his girlfriend/wife. That's okay, right? RIGHT??? I'll come back to that.... It was ChL, my common law spouse and his brother, DL, who really defiled me. DL came into the bedroom where I was sleepily waiting for my guy to come to bed because I intended on proposing to him that night. He'd already said yes, which was funny because we weren't the marrying kind. But then it kind of grew on us till we decided, yeh... maybe...sure, why not. I wore a corset under my old lady pajamas and held two matching, funky, tigers' eye rings in my hand.
these exact ones!
ChL hid in the closet - so courageous, right? And I loved him anyway. I do love him but his constant accusations finally made me realize that those accusations were about him. I've been far too ill to do the things of which he was constantly accusing me. That's nasty, choosing to treat your perhaps too honest, loving, faithful significant other with suspicion and mistrust. But Cary's actions were just sad, pathetic. I never held anything but love for him because I chose to, and because I loved the boy, Cary, the 16 year old boy to whom I was too shy to speak, or even glance at. That boy will always be with me. The man, Cary, was someone I didn't know, someone who chose permanently to hurt everyone he ever knew, especially those who loved him most - his two sons, who now have to live their lives without a father. He loved them. He was so proud of them. But they couldn't connect. I gave Cary a copy of Kahlil Gibran's "The Prophet" and read "Of Children" to him.
He hugged me tearfully, and thanked me because I'd had a wonderful conversation with his son, sharing a joint on a bench up the hill, overlooking both city and wilderness, and I thought Cary would want to know, although I kept "M"'s confidence. And Cary did appreciate it. But in the end, he tossed that book in the pile of my things at the front door.
That's okay. Cary was a troubled man, bogged down by too many years of religion. It poisoned him. Religion takes your power away. He was struggling to control anything and everything he could, and as a "christian therapist", he found his niche. People believed him. They trusted him. I trusted him. But for Cary, that easy trust people gave him was power. I will write this letter for as long as I must, and probably not in chronological order, and I will probably be switching tenses and all manner of grammatical faux pas. That's just the way my brain is going to make any sense to this, if at all.
Dear Cary, April 2, 2016 (First and foremost, I must point out that your former spouse is a kick-ass gal whom I admire and respect because she is respectful, fiercely loves her sons, is thankful that you gave her those sons, and she totally owns her own choices. I am grateful that she called me. Because of her ability to listen and speak truth, I was able to reboot my own voice, which had gone MIA for nearly a year. Beyond that, I want and need to respect her enough not to bring her into this). December, 2015: You don't exist anymore. I hope that when you laid back in your CRV, just chillin', listening to tunes, while carbon monoxide funneled into your lungs, pulling you away from this world, you at least got to experience a DMT moment, a moment that seemed, for you, to last till the energy that was you, dispersed, and went wherever that "death mist" goes. That's all you were looking for, that open-brained experience, to see and know everything about the universe, how it all works, the clarity of mind and soul - and I use that word, "soul" loosely. I know what you wanted. I searched for it too, only to find it in a choice I had to make. That was all. A choice to just be happy, regardless of circumstance. And your choice was to leave your boys behind, your siblings, your dad, friends, even people you hurt, people who loved you anyway. Have you come back to the atmosphere? With drops of Jupiter in your hair? Do you wish you had made a different choice that day? Or did you find the stillness you craved, at last....? I had almost finished my therapy at the Edmonton Sexual Assault Centre when I heard. I hadn't planned on telling anyone else because I didn't want your family to feel hurt because I know them. I loved them. I especially loved your sons and your little sister who was my best friend when she was 13 and I, 26. I loved you, Cary. You were my friend once. Then you raped me. You came into my room where I lay prone, sleeping with my face to the window. What was I supposed to feel then? You were a troubled man, a troubled boy. I could see that when I was only 15. I had taken the mail route on our side of campus so I could intercept your letters. We met at a Youth Quest at Prairie Bible Institute in 1979. You kept my 9th grade photo on the visor in your Datsun. But later I received a different sort of letter, full of anger, unfounded, confusing. I remember reading, "You're bloody...." and not being able to read much further. You and I would never be together because I didn't do anger. I didn't know how. Still don't. This will be a lifetime work in progress. I've still much to remember, much to ponder, tears to be cried, smiles to hold tight. Underneath the rage, Cary, you were beautiful, yes, the golden child who never felt good enough. I read your journal. All you wanted was to break the mold, be better than your parents and siblings, better than everyone you knew. But what did you mean by "better than"? Cary, you were good enough and far more when you were 16, and I, 15. You were going to ride into town in your Datsun 280Z to rescue me from my abuser. Yes, weren't we cute, so valiant you were, rescuing the beautiful, innocent damsel from her dragons. You gave me hope. I packed. I was ready for you to take me away from the horror of my life inside a religious commune. But your grandmother, dammit, told us that you could be arrested for kidnapping, and she was right, but my hopes just burnt into ash in two seconds, leaving me too scared and disappointed to even cry by the phone till I finally retreated back to my bedroom, my only sanctuary. So it goes. Poo-tee-weet - favorite Vonnegut Jr book, "Slaughter House Five". I love you, Billy Pilgrim. Cary Pilgrim... where did you go? Tralfamadore or it's equivalent? I won't even ponder the "why". I know why. So it goes. Poo-tee-weet. The atoms you released with your every exhalation are still here. I have Cary atoms inside my body still. I literally carry you inside me. Why do I love you? Why do I love you more now, after what you did to me, but especially to your two sons? I was angry at first, because you KNEW your sensitive son would be the one to find you and be forced to deal with the mess you left for him. I thought it so very brutal, as your final act on this wavering, unstable stage of life. But as I've pondered, alone and sinking back into my own silence, I'm beginning to understand that only he, M, the beautiful-souled, sensitive son, would have the presence of mind and of character, with his intuition of the timeless illusion of time, to .... to what? To do what needed to be done in the moment I guess. Did you consider that when you were taping the hose to the exhaust pipe, placing a damp towel in the open crack of the window where the exhaust fumes raced in to take you away? Did you consider how M would feel? What he would do? Would he cry? Scream? Who would he call? Would he pull your body from its own wreckage of humanity and carry your shell, the remnant of his daddy, inside, lay you down and lay his head down on your motionless, decomposing chest? Or would he race around looking for a suicide note, anything, any sign, anything left behind that would elucidate his suddenly imploded world? Would he hide things he wanted to keep from the family, from the police? What was he thinking? Did you choose him for a reason? You were big on reasons, thinking there was a reason for everything. Yes, sometimes you were that dumb. Did you choose him because you knew he could handle it? Handle you, your entire 53 years, gone through the one autonomic function that keeps us alive - breath. Prana. Chi. What a paradox, an enigma. You used your life to make it stop. Breath. Life is everything, when all things are possible. Death is nothing. There is no You anymore. There are no more possibilities. None. Just like there was no you until you were conceived. But from conception onward, through all kinds of changes, you stayed You. Did you choose M because you knew he would know this? He'd never say so, but he intrinsically knew. Maybe there would never be words to match that day, but he, M, would be able to comprehend. I don't know. I could surmise the rest of my life and never know. He told me he wasn't surprised. And he already knew what his daddy had done to me. He told me I needed to know it wasn't my fault. He was 18.
And why was I thrown into the pot during your last months alive? If I hadn't been so sick, if I hadn't needed to get well for my relationship with ChL, for us to be Us, if I hadn't been desperate to feel better, or at least not to feel so horrible, I still wouldn't know. In fact, it might not have happened. I'll never know what you were really feeling, besides what you showed, and that was ugly. It was rage, misdirected hurt, emotional and physical pain. Why were you so angry with yourself, Cary? Because you so desperately "needed" to be in control, and you weren't because you wanted to be the one in control of those around you. Nobody can do that, Cary. Your calm voice will be remembered though, not the furious words you could barely spew because you were so angry. You are loved. You are so so loved! You did this to me, and what you did to me you also did to ChL. I guess I just handled it rationally, maturely, but ChL didn't handle it at all. He went into stupid, angry, irrational mode, as if this had been done to him alone, and then immediately made it impossible to admit he'd made a huge mistake. I was honest. Should I not have been honest? We could have fixed it together, like adults do, but ..... (I can't even think about this right now... I'll come back to this disjointed stream of consciousness)... My first kiss, a peck on the cheek, and my faced burned with nervousness. 1979, I was wearing a Little House on the Prairie dress, long and wide with a waist too tight for me, and bulging out the top. We Prairie girls all sewed. We took home economics and baked pies with leathery crusts and sewed dresses with flounces that ripped off when someone stepped on it in the crowded stairwells at school. We pinched our cheeks to make them red, put Vaseline on our eyelashes - I never did know what for. I bit my lips, pinched my cheeks, wore a dress I'd made in Home Ec., and that's the photo you pinned to your visor. Where is it now? Where am I? Where did you put me? Summer, 2014: You told me, after you'd met ChL, that you could make him leave me. You told me that you could make anybody feel anything, believe anything. Thing is, I knew you probably could. You just didn't need to do it to my life, my guy, my ChL. But Cary, I have to say, you didn't do this to me, ChL did. He's the one who decided to believe a rapist instead of his common law spouse, me, whom he'd been calling his wife for two years already, pressing me to call it "home", so I finally did. So, whatever you did, Cary, it was instantly forgiven. I was just sad that you didn't know why you were so passive aggressive, and that you fully believed that all women wanted you. But it was ChL and DL who defiled me. ChL was supposed to be my support, my safety net, my Everything. Instead, all the accusations he'd been throwing at me turned out to be him. He was the liar, the one who couldn't commit to love, who couldn't just decide to be happy, to love, to allow himself to be loved. And you, of all people, would have known how loyal I was. There wasn't a day I wasn't talking about ChL, writing to him, about him, about him and me together.
Yesterday I drove to your old home and sat in front. There were no flowers on the patio, no hammock, nobody coming and going. No you. I remembered, I felt what you did to me. I cried. I'm not quite a hardcore materialist so I yelled and screamed at you, "You're dead, Cary," because maybe you didn't know. Maybe because of the way you left, you didn't get to fully leave. I tearfully told you that you died and that you did it to yourself. You killed yourself, Cary! You fucking left your two sons who loved you more than they could articulate. They love their dad... but he's gone. You are gone, Cary! You chose to die rather than face the consequences of your actions. You were on probation when I got there in June, for stealing a man's wife when they were in counseling with you, and then telling your sons that you met her online. Probation? They should have taken your license. This time you weren't going to just lose your license, you would have been facing prison time. And yet, you were a good therapist, when you weren't sexually assaulting your female clients. You really were good at talking. You were right. You could make anyone believe anything. You could make ChL leave me. But it was ultimately ChL's decision to believe a serial rapist rather than his honest wife. So I don't blame you, Cary. It was okay though, going to your old house, cathartic for me. But it didn't help. It didn't put me back together. Only I can do that, and I am. I will. Funnily, I just picked up Maria Konnikova's book, The Confidence Game: Why We Fall for it Every Time. It's more about me than you, Cary. I'm the gullible one. You were the confident smooth talker, and you really did believe in yourself during your sessions. Late at night you questioned yourself. You even cried. We sat on the couch late into the night, talking about what was real and what wasn't. What if everything you were telling your clients was just bullshit? I told you it didn't matter. In assisting them to create some delusions, you were helping them feel better. We all need delusions to get through this bizarre hologram we think we're actually living. But I was so focused on getting well, I didn't pay enough attention to the priming you were doing to me, like asking me if I just let things happen to me. Yes, I guess I do, was my answer, which you must have filed away for some later midnight hour. (By the way, ChL.... I'm not totally sure why I would love you still, except that it's because I chose to love you. I didn't fall in love with you. You fell in love with me and I followed. I chose to love you. I don't base my feelings or behavior on my moods. That's why I can still love you after you made me homeless for two years, after you called me a bitch, whore, cunt, crazy, psycho, etc. You even said you'd been doing a lot of reading about psychopaths that described me ( seriously, was that healthy???), while I'm reading books about The Sexual Healing Journey: A Guide for Survivors of Sexual Abuse, How to be An Adult in Love, and of course, still reading my favorite scientists, especially Michael Shermer - Why People Believe Weird Things, The Moral Arc, The Believing Brain and The Mayo Clinic Guide to Happiness, and Sam Harris' latest book, Waking Up and so on. You can say all you want. It won't alter my choices. Sticks and stones may break my bones.... and even words will hurt me, but not define me, so I'm going to love you. That's that. You need it. You need someone like me, someone with heaps of emotional and mental strength, someone honest, someone to tell you to quit being a dick, someone willing to be vulnerable because vulnerability is the foundation to being in love like an adult. That's who you need to love you). June 15,2016 You know what, Cary? This isn't your story anymore. It's mine. You opted out. And today I found out why I've been so sick for so long. And it's a fairly easy fix. A Bi-PAP. Apparently, the data from my sleep study was so out of whack, they called Dr. Bev and told her they were booking me for yet another study at the Foothills Hospital within a week. I always said that I shouldn't be here. I just wasn't supposed to be here. I should have died of crib death. But I didn't. I kept breathing just enough to feel this - the constant bombardment of horrible physical sensations. No one knew. No one told me. I snore when I've taken a bit too much zopiclone, but other than that, I'm quiet. But I thrash and wiggle, toss and turn, get up, fold the pillow, reposition my knee pillow, get up, go to the bathroom to pee, give up and go to the couch to watch a movie. Didn't anyone think that was abnormal? I'm getting better. You exited 2 weeks after your 53rd birthday, and I will be well and just beginning to live by my 53rd. The other day I was looking for something in my bin of files. Feeling around underneath, it was wet and slimy. Robyn had put my files on top of three open cartons of soup broth. All the paper files were okay. The papers I had encased in a plastic folder to preserve them because what was written on them was/is precious to me, were soaked and stuck together. All the notes Jeannine and I had written to each other in class at college. Most of the writing was illegible, but I set it out in the sun until it had dried up a bit, then painstakingly pulled apart the pages. Some of them were poems I had written for you, Cary, when I was 15 years old. I can't quite read them now, but I don't need to. What are you now, Cary? You aren't. You just aren't. That's why this is now my story. And when my body finally ceases, and it won't, not for a long, long time, but when, or if, it does (I read Ray Kurzweil), my story will be over too. Until then, I will write. I will remember. And I will smile. I knew a 16 year old boy named Cary. When I received that "bloody" letter and went to bed, saddened but not heart broken, my mother came into my darkened room and gently swept my hair from my face and massaged my forehead, and she said, "Oh Deanna, what boy has broken your heart this time?" Funny how she knew me so well. Maybe that's why she was ordinarily so mean to me. She knew me. I am just like her, and she wanted to wipe the slate clean. But the thing is, I wasn't heartbroken. Just sad. And I would get up the next morning and walk to school with my best friend, Val. And I would keep going. I would marry your good friend, Jim, who probably knew you better than anyone did. And I loved him. Oh how I loved him! With ferocity I clung to him, not in a needy, snotty way, but with a firm adoration and the perfect brew of abandon and sensibility. He was honest, real, and funny, so funny, and oh my god so smart.... and he knew you. You. He was your friend. That's how I kept that 16 year old boy with me. I loved him instead - my husband. I loved him! I wanted to wake up 50 years later and know that we had loved each other all that time, and would love one another until our bodies were gone and our energy dispersed. I loved my husband.
********
So why the three "rape"s? And where the hell is the love story in all of this puzzling schemata? It is all unfolding as I remember, reminisce, hope for, experience moment by moment while in the moment, find artifacts like the pages of notes Jeannine and I wrote to one another in college classes like giggly 3rd graders, uncover poetry from 35 years ago, written by the 15 year old me - poetry far beyond anything I could conceive now, and as I create, invent, gently urge myself to outrun the M.E., leave it behind as I head into the next 51 good, healthy years Dr. Bev promised me.... It's here, somewhere. Honestly? I don't quite know. But it is here, surely as gravity holds me here in my bed with Paco, my chihuahua, without whom I could never survive (a "Peanuts" line, spoken by manipulative Lucy to her sister, without whom she could never survive). I mean, I know what I mean. It's the peeling of the onion I'm not sure about. It's going to make me cry, as onions do, and each layer holds another story within the story. This is a journey that began at least once, probably many times, a journey I'm still willing myself to do, knowing there is no end, just the journey. You'll see. I hope I do. July28/16 ******** I forget sometimes. You. Yes, I momentarily forget you. Then I find myself slipping into one of your shirts. They're no longer sentimental from the 16 year old Cary. They're just shirts that fit, even though I've lost about 30 pounds this month. They're great sleeping shirts, hanging out shirts. But I now fit into those horrible jeans of yours. They're ripped up in the crotch, and you were short at 5'7" - though the tallest in your family - and the bottom seams are nearly gone and ripped, and flap around because you just walked on them. It was cool. You needed to be cool. You had this hair stuff you put on your balding head. It didn't help. You were nearly bald and should have been shaving your head long ago. You were never the Cary I remembered, until you smiled.... then I recognized you. But that smile was rare. You thought all women wanted you. All I wanted my friend, Cary. My friend. Were you ever a friend, Cary?? Ever? What was it that drew us to one another? I wish I had an old photo of you. I think I do. I'll dig it out.
I've left this for awhile because I've been so sick and because I haven't driven by your house in about a month, having forgotten to get my appointment dates from Dr. Bev, and the urinary tract infection that set me back about a decade. But once again, as I drove past, I found myself talking to you. I don't know why. It's not like I feel you like most people say when they lose their loved ones. They say the dead are still with them. M said he didn't feel you though. He's too smart for that. You said you'd see your mother again. You said you could feel her. And who am I to disagree? I'm not Christopher Hitchens or Sam Harris. I don't even know if I'm a hard core materialist. I'm not. In fact, one day as I lie sleeping on your couch, I heard kitchen sounds - pots and pans, oven and fridge being opened and closed, noisy cutlery drawers - kitchen stuff. I told you. You just smiled and said your mom was always in the kitchen. I knew better, but it was a sweet thing to feel and say. I want it to be true. But that will never mean it is true. I miss feeling all spiritual and "divine", but that doesn't mean I was spiritual or divine or ever will be. Just words, English words. Mostly meaningless by themselves, meaningful only for the person who uses them. Completely subjective. Like my husband said to my sister Robyn, "Deanna has a relationship with God that no one can touch or understand. It's too deep". A "deepity" is what Daniel Dennett would say. I tried to yell at you again as I drove by, but all that came out was a quiet, almost tearful, "I'm sorry. I'm sorry I wasn't what you wanted in your home. I was too silly. I had to be, have to be. I'm in so much pain all the time that my only defense is silliness so I take advantage of it every chance I get. You thought I was ridiculing you. I mean, you did the same to me and I laughed. I always laughed. Laughter, my sisters, and ChL were my best medicine. So I'm sorry. I'm sorry. Whatever it was that made you so angry, enough to come into my room in the middle of the night and take back your "power", I'm sorry...." I know this is ridiculous. I'm not supposed to be the sorry one. Neither of us is, actually. It's just something that happened. But I am. I am sorry because if you hadn't shoved me out of your life, you would have talked to me. I would have talked to you. You wouldn't have gone into the garage that day, taped a hose to the exhaust, pulled it through the window and gone to sleep forever. Sleep. Right. I'd like that. I'm jealous. I wish I'd had the strength to do what you did. But I have never been been facing a judge, court, accusations, truth, prison. I only face this, this whatever It is I can't ever quite describe, other than "pain", and that so so so barely touches what It is. Yes, I'm jealous. Or, if you'd been insistent, I would have covered my face and climbed in beside you and held your hand till you let go. Yes, I'm back to that. Back to remembering your story, thinking there still is one. Why? Because I told someone that I have your clothes. I read some of the poetry to him, even though he couldn't understand them because he's French. I'd forgotten how much hatred you had. This poetry was all about how awful you were treating me, so unlike the first contact we'd had after 30 years, when we laughed, told each other lies we knew were lies because we'd promised each other once, in 1987, when we were both at the University of Alberta, that we'd never tell each other the truth. Instead we'd just laugh and be in a bubble of untruths where nothing mattered except the moment.
And you replied, "let's eat sprouts"
We could be 15 and 16 again and never be adults. But I grew up. I gave up childish things and embraced reality. I gave up religion because I knew how poisonous it was. It was poison that killed you. Not so much the carbon monoxide that day, but religion. Religion had been killing you your entire life. And the thing is, you weren't even there. You didn't want religion. You were looking for something deeper, some deeper "truth", something "divine", the way I had lived for so long. I could have told you that, Cary. You didn't let me! You left! And you didn't even leave the truth behind. Just more confusion, more lies - the religion you thought you left. You couldn't get rid of it so you went away permanently, leaving no real explanation so that no one would know. I knew. I still know. Also, there's this: I met someone unusual, completely unexpectedly, on a whim, most likely in my sleep. He's beautiful! But we don't even speak the same language! One night (in my sleep I guess), I posted a photo of myself on "enabledating", thinking (was I thinking or dreaming? It's the equivalent of drunk dialing I think) that if ever I was to meet someone who understood, it would have to be someone with a physical disability. The next day I had dozens of emails in my inbox, too many to count. I opened one. Just one. I thought he looked like a retard (Yes, I did. I used that word), so I figured it couldn't hurt to have a retard for a friend. That was safe, right? But it turned out he was kind of, umm, really awesome! What am I to do with this man with ataxia, who lives in a wheelchair and never stops smiling? What am I to do? Tell me! Should I trust again? He doesn't look like a "retard" after all. He looks like this:
And this
And this
And this
So you see my conundrum..... is this a riddle I'm supposed to solve? I'm not good at riddles. I'm too tired. This would require thinking. I don't want to think. Again, too tired. My brain is mush. I know - I shouldn't have Syl in this post, the "rape" story. But, I did say it was a love story and I still don't know what that is. I thought I knew when I gave it a title. But this keeps getting weirder. It's happening as I write. Am I writing it into existence even though it's past on the timeline? Is it past? Has it passed? So we've been talking on Skype for nearly two months, 2 - 3 hours a day. I've told him all about it. About you, about my beloved husbands, about my beloved ChL and his sudden about face after knowing what you did. Syl suggested I burn everything. I will never, never, never do that. Burning what's left of you, which is nothing, won't make you go away, even though you're gone. I breathed the air you breathed out during the weeks I was there. I carry you with me everywhere. I can't not keep you in my body. Memories, whatever they are, neurons firing in the brain, lighting up my brain like the universe, my Cary Universe, will never go away. And the Cary atoms from your breath are stuck in my lungs. Anyway, I needed a couple of tee shirts that are comfortable to sleep in, and a pair of ripped up jeans that fit my boyish body. No, I won't burn them. I'll wear them, even the jeans, after I fix the bare crotch. I'm an inch shorter than you, so I'll walk on the seamless bottoms too. You were wearing these when I first arrived. I have some good memories. Don't forget that. I do have good memories.
This was for you because already you were planting your poison and all I wanted was to plant love, sprout kindness, ---------> the way it is supposed to grow, the way we all need to love one another..... but you never did understand. You never even noticed my hardy seedlings. I am sorry for that. I'm sorry.
<---- You went away that day, with your latest girlfriend so I happily spent the day with me. I walked around the house nude, made brownies, ate ice cream, wrote, read, slept. It was a good day. I remember. I also remember watching for your CRV, afraid to see it come around the corner, hear the garage door opening. Why was I scared of you already? And why didn't I ask myself any questions when the fear was becoming so apparent? Just because I trusted? I believed what was told to me. I believed what people told me. Like, "Stay! Stay as long as you like! Bring your plants, your pottery wheel, anything to make you feel at home...." Stay as long as you want....is what I believed. You said it. I believed you. I do that. Sigh... And it wasn't even the first time with you. Yes, we are. It seems to be happening when I least expected it, an epiphany on that timeline. We're making our way backward to the second Rape. July 31-16 I was asked the other day, after that last post, if I was in love with you. I didn't have to think about it. Of course I was! I was 15! Who isn't in love at 15?! It's not "puppy love", not a "crush". I was as in love with you as a 15 year old can get, as in love as I could possibly be at that age. Without a doubt! But I know what he meant. He meant, was I in love with you that summer, two years ago. No. I was in love but not with you, Cary. Not a chance! You knew that. With all my chatter about ChL - is that what made you angry - that I spoke of my love for another man, someone you didn't know and didn't seem to want to know, and eventually said you could make him leave me? I still ask that question, knowing it is a moot question. Nobody should be angry like that. The only time anyone should rightfully be angry is if/when someone is being treated badly. There is never a reason to be angry other than that. I get now that you didn't know how sick I was, or what "sick" entailed. You didn't know it meant I'd be lying on the floor with my knees to my chest, or huddled over a couple of pillows with my butt in the air, burning face, perspiring all over your hardwood floor, or the carpet in my room, or lying in the bath with excruciating leg pain, and a low, guttural moan emanating from some primordial place inside me. You said I could come. You said I could stay. You said you'd clear your calendar to take me to Dr. Bev's. You said a lot of things you didn't know would become so difficult for you to do because you'd never encountered what it all meant. And I had recently learned to take any help offered to me. You even sat up with me while I OMG'ed for hours while my legs were in such pain I might have tried to slice them off if I'd had the energy. You did these things for me, even though I tried, in my cries, to protest. You stayed with me, with my legs over your knees. You massaged them, fell asleep, massaged, fell asleep, between my bouts of cries and moans. Eventually you aquiesed to going back to bed because I had quieted and felt I could sleep if I didn't try to move. That was the last thing you did for me. Thank you. I thanked you over and over. You seemed to give the impression that it was what any friend would do for another. But I was wrong. Inside you were seething. You were beginning to hate me, not knowing it was the disease you were hating. ******
Right, back to early August, 1984, after being shoved onto your couch after I had shyly asked if you would take a look at the tires of my husband's and my Nissan. Instead of coming down from your apartment as I had expected, you buzzed me up, met me at the door, pulled me in, pushed me onto the couch, pulled off my jeans, and while I wondered if I should run or pretend this was romantic even though I was married with an 18 month old son, it was over before I really knew what was happening. I was horrified, thinking I'd just had an affair! All I knew is that I had to go tell my husband, your friend, and leave town.... but which to do first? You hadn't even said anything. Nothing. You just did what you did and I was still too young and naive, having grown up with no life education, only religion, and nobody talks about these things on a bible school campus where every class begins and ends with prayer, the days begin and end with bible class, and there are myriad bible studies and prayer meetings, missionary meetings, Sunday school, church, church youth group with this church, church youth group with that church, you even prayed with your friends, composed religious songs and sang them at the church christmas concert, school christmas concert, as a "special number" at church, and on and on... So no, I didn't think about what you were doing. I only thought about what I was doing, what I did, how could I, why, how was I going to live knowing I'd done this, and so on. I even considered for a clueless moment that maybe you loved me. My husband loved me and were at it all the time! But this did not in any way feel like that! I hurt. My insides bruised, burned. Shame on me! I left. You didn't even look at the tires. You didn't come downstairs. I went home, packed. My best friend was living with us. She packed. We left and drove till neither of us could keep an eye open, found a cheap motel, slept, left early. She wanted breakfast. I wanted to keep going. We got to Commercial Road outside Winnipeg before noon, where my sister and her husband were still in bed, wondering who was honking down the long driveway in the black Nissan truck. Me again, both times, after an unexpected encounter with you. Wow, how did I not have any personal power? I do now. to be continued....
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.
"...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...
Human Canaries - click to see Dr. Majid Ali's book on The Canary and Chronic Fatigue. He has authored well over a dozen books on the subject. He told me when I was in his office in Denville, NJ, that the patients who had completely rehabilitated before 9/11 were the first to come back to see him after the attacks due to environmental factors, the chemicals unleashed, and stress even if they hadn't been directly affected. We are the human canaries. We feel the effects of an unnatural environment before anyone else. It's an epidemic and it's not going away. 
as I lie here day after day, waiting 
because already
