First off, Cheryl, who has always worked tirelessly for the government and with the postcard project, and with the 'Keep Beth Alive' project has caught ‘Dread Lurgy Reanimated” which is a type of cold which seems to take 7 to 10 days, goes into the lungs and is really wretched. She caught it at a work retreat and is now suffering, too far for me to be able to bring her soup, or some hot lemon for her throat. If you want to send her a card please send it to:
Elizabeth McClung (for Cheryl) P.O. Box 2560 Port Angeles, WA 98362
That would be really kind. If you want to be extra kind, please send pocky (actually you can send to both of us, since pocky seems to go with bed days like, um, strong, red haired women taking a slo-mo shower go with an increased breath rate (Go Scully!).
I haven’t been out much but every time I go, I try to record something different. The fact that I have my own immune system literally chewing through my brain helps me get a ‘different’ perspective. This is what the trees look like outside the video store. They remind me of the bamboo forest just outside Kyoto where the artists, poets and other outcasts from the royal court made an artists colony in their exile.
Trying to use up the blue cross while we had it, I had been to the optometrist and this was my reward (When I haven’t been hungry or thirsty for a couple years, and the only taste buds I have are at the back of my throat and in my nose, plus if I get excited I stop breathing, the whole motivation/reward thing gets odd). The optometrist dropped another of those little bombs, the ones that let me know that even if being ‘terminal’ is somehow in my mind, my body is changing, both rapidly and permanently for the worse. The muscles in my left eye (the one the eyepatch is on in pictures) aren’t working correctly. To avoid getting double images my brain has been more and more ignoring the left eye entirely. Inoperable, just another bit of the brain gone wrong.
She asked, “So have you found this has affected your driving?”
I told her, “Honestly, I can say that this eye problem has not diminished my driving one bit, or caused any problems.” (Linda was above me restraining from strangling me).
Optomitrist: “Ohh?” puzzled.
Linda: “She doesn’t drive, since she passes out…”
Me: “Not EVERY time!”
Linda: “….and she has seizures.”
Me: “Those are getting less frequent.”
Linda: “So, no, she doesn’t drive.”
Me: “Yet! I haven’t had an accident in years!”
I have to hope that one day Linda will let me drive (or more like absent mindedly hand me the keys). Okay, true that now I can’t feel my legs as the massive bruises on the back of my legs Cheryl found this weekend indicated, but again, if those kids can do it with sticks and stuff in the movies, I am sure I can too.
We decided to go out to the Bengal Lounge, but getting in was, er, complicated and for wheelchairs involved starting a series of switchback ramps (four of them) which started behind the bus depot. I was freezing! Once I got inside, then it was only an elevator ride up another three steps until the hallway to the Bengal lounge. The Conference Center which had this ‘maze for wheelchairs’ has posted next to the elevator for three steps the ‘Special Award for Excellence and Innovation of Design”. I have noticed that the further a wheelchair has to wheel, the more the designers applaud themselves. If 10 stairs can be turned into a 14 switchback series of ramps which take a quarter mile of wheeling – that is SURE to get an award.
We were not the only ones to want to go to the Bengal Lounge, and it had a long wait. They were playing Jazz with piano and a double bass in the corner. Sadly, after talking with the native art experts for 30 minutes, I had a little TIA and passed out. Here I am after being propped up, you can see how the side closest to Cheryl is dead and the other side of the face is compensating. But here are some of the masks we saw in the Gallery Quality stores in the Empress Hotel. I have visited this store; it used to be at the end and have the largest collection of Inuit art outside the Canadian Government. Now they do all West Coast groups, and Linda and Cheryl found a mask by Hunt. It is sort of odd to have a sculpture on the wall by the same person in an exclusive Gallery. What we did find is that Mongo Hunt, the father of Richard Hunt and grandfather of Jason Hunt not just opened the carving shed at the BC Royal Museum, he built the long house inside (it is in the pictures of when I went to the museum – lowly lit to represent firelight with piped in sounds of light drumming and dancing). I loved hanging in that long house as a child, left at the museum while my grandparents got food for the trip back to the woods. I never thought that one man could have made it, and the totem poles inside, much less that I would met and talk to his son and have a commissioned piece by his grandson.
In the other gallery, they had more contemporary Native art including this amazing piece of Jade sculpture, which has three types of unfinished, finished and a special polish all of the SAME piece of connected Jade. I know it is Jade because I have a few hunks sitting around, not quite as large as this from when I went with a couple 4 wheel drives, a chainsaw and a winch to a Jade mine where the Jade was helicoptered out. The price had dropped so Jade just sat in blocks on the ground. This underground fantasy with mermaid is far beyond anything I could have imagined looking at those unfinished blocks. I guess that diversity of vision is why I like human brains.
Well, the rule of three is that in any attempt for something new, 1 time it will be FANTASTIC! One time it will be okay and one time it will be a disaster. Going home with no booze, no jazz, and no talking in the lounge, it was pretty much a disaster. We worked on the postcard project instead, using postcards sent as gifts from the tip of South America among others. The back side allowed my strange mind to work as the writing says: “Hey!” cried Thad the security guard, “Take your catboy love out of the produce section!”Catboys: “But we love the smell of catnip and cilantro” (the joke is that cilantro is my catnip, I keep asking Linda to add it to everything: hamburgers, Mexican food…….cereal.)
Outside the construction has moved to the front, only 20 feet away and so louder than ever. It is a race between our sound bafflers on the room and the heat, since once we need to put in an air conditioner in the room, all the sound baffles will be useless and sleep will be hard to come by. Today, while taking pictures for the blog (from the art I have), we caught one of the workers doing laundry. He was spreading his work clothes on the cement and spraying them with a high power hose, then washing them and high power hosing them again. Here he has just finished and his laundry is done and drying.
Tomorrow HAS to be a bed day for me. The problem in bed days is my back (it generates heat but can’t escape, after an hour or so that means I pass out – so I have to use ice and fans to try to limit that). But for all the fantasies of the joy of being in bed, it isn’t: Physically or mentally.
“How can the world just carry on? How can everything carry on?” It is one thing to find out that I am not irreplaceable at work (not that they can do the work AS WELL, just that they can find 2 or 3 people to get some of it done), but quite another to find that I am redundant as a human being.
No one walking by thinks ‘who is up there’, even the workers who dictate my life and sleep probably don’t know what I look like or my name. In bed, without access to a computer I strive to gain back the reserves I need but…
My life I have spent trying to give 100%, and failing. I worked from the age of a tween, real paid work, and before that as a ‘trader’. I have always worked, and exercise, ready to ride or walk when needed. I went to university and had a full time job and an overload schedule. I scheduled every single minute and yet I KNEW I wasn’t giving 100%. Somewhere, between the breathing, the racing to school on my bike, making a new record and on weekends riding my bicycle to the top of mountains, or running them, it wasn’t enough.
Two years ago, I went on a picnic and came very close to dying (CTD in EMT speak: circling the drain). An EMT saw a gravestone and said, ‘That’s what we should put on your grave’ – it was a large single word carved in stone: REST.
Since then, as the daily activities have taken three times the amount of time as muscles and nerves die, then five, then ten times, I am always busy, always behind on things to do. Only now – free of the human feelings of burning and choking to tell me when I am deprived of oxygen, or the warnings for when I am working too long for my muscles as they lock up, or my spine locks. Nor do I get warning when my hands stop working as my spinal column is squeezed, or I pass out from working so hard, there just isn’t enough oxygen to keep me awake, but I don’t stop. I type with a finger, a bit of thumb, a nose, a tooth.
Now, I give 100%.
And it isn’t enough. And I don't know why.
The last while I have been more than pensive, I have been suicidal. I am only stopped because I can’t move enough. I spent so much energy each day working to keep myself going and yet I am pulled toward taking active control of my life and death. To die because I am not smart enough to keep myself from a cold, or because basic functions have stopped isn’t really a decision, is it? I mean, if I am not hungry and I don’t eat, how is that suicide?
The truth is that I am terrified. The unknown in front of me is not in any way sudden, but delayed, a fear I must climb painfully as it stretches before me. It is a test of my willpower. The day I did let my depression in, the day this week I gave in, I degenerated quickly, struggling to breath, passing out, weak.
So every day, every hour I do things that I used to think, “Put me out of my misery if I get like that.” Do I laugh now?
The secret that no one wants to know is that pain can be, not endured, but altered, there are tricks, like warping focus and grim will. Maybe it is because I did things that most people thought impossible while able bodied but I manipulate this body to the brink of death and beyond. Slap yourself hard to produce enough endorphins to counter the nerve pain, concentrate on the next letter in this post in order to not think about the pain in the spine, which flares so high I have to consciously disconnect the vomit reflex to stop the pain from making me vomit.
Imagine an arm on fire. Now imagine that the arm is on fire…..forever. Many people would rest, would curl up but I wondered, ‘can I move it?’ and I did, and it still hurt…..but I moved it. And if I moved it, maybe I can lean on it, maybe I can do something with it.
Yes, I have muscle pain, I have bone pain, I have fatigue (but the truth as some have found is to use the pain and the feeling of the knife at my throat to force me to move while with fatigue. No, it isn’t the worry and terror that if I don’t move the feeling of the knife will continue slit my throat it is rather the promise that I will. Peace. I am not allowed around scissors or knives. Not since I took a letter opener to my face, from the forehead to my cheek, right over my eye (Yeah, those months of no pictures of me). Do you think I am not ashamed, not wishing that it was something else, and that in a few moments of bliss and post exercise high, I think, I say, “I can do this” before I am crushed into the ground, my bones shattered by the weight of it.
If only broken bones would slow me down. And so, like the trees above the video store, I try to find anything of joy, anything that reminds me living is important.
Why? Because there are real people, friends, out there whose care has carried me. Because I am just too stupid to quit. Because dying is easy and living is hard. Because life is green, and only while I hold out, can that remain. The joke of it, right, someone who is terminal, and who doesn’t have an immune system (except the one attacking them) who cuts themselves in order to force themselves into eight or ten hours of non-stop work. I assessed I needed at least two bed days a week to get reserves to last the first part of summer. I figured that out over a month ago, and I haven’t had a bed day since there – too much to do, so much to do before it is too late. One thing I can thank my upbringing for, is to learn that almost anything can be endured. When I walked to school and passed by barbed wire in LA as a child, 8, 9, 10, I used to grab the wire with both hands, letting the barbs sink in, and found that it was survivable. Indeed, later I couldn’t understand why people put coats over barbed wire when going over fences….it is just flesh and pain. I was being prepared to be put in a concentration camp and be tortured to death. I used to practice at ripping my nails out. And no, I don’t have a high pain threshold, indeed, strong wind and even touch is painful to me. Linda said once that I might have the lowest pain threshold doctors have seen but the highest will and pain endurance.
But now, the things that happen to me daily, it scares me, it breaks me down, sobbing, and then I keep working. I once told Linda that God and I have an arrangement, that as long as I am in pain, God lets me live. I told her that over 10 years ago. Now, I wonder if I am sort of celestial experiment of what can be endured.
I KNOW that others endure these things too, but after a while, they just stop speaking about it. Though I now realize what at least two of my friends deaths were. And I think I know the death of another, that he just stopped fighting that daily fight, nothing deliberate, just worn out. So to take a bobsled down the major hill of town after taking a drink of barbiturates sounds like a pretty good thing. Or to sit somewhere with someone I love seeing what is good and beautiful as the last thing I know,it is so tempting. To have that something in my control at last.
I am getting a mouth guard, not because of the seizures, but the pain hitting, holding back the pain and keeping on, or just being conscious, so I can keep on, requires a gritting of teeth that chips them, creates cracks in my teeth. Sometimes I think that I am the fourth seal, the pale rider whose name is death, and hell follows me. Everyone assumes that means it goes out to others, but I don’t know, maybe it just describes a person who manages to live with hell, and stay sane. I think some others who have been there know that kind of pain logic.
I am sorry for the bible language, much like The Prisoner in Kafka, this was written into my skin with a pen of steel, over and over.
I asked for hope, for something to keep me going. And now I am going to create it, a picnic in two weeks, I think, a dinner out in three. Let’s all do it together and by the rule of three, one of the actives should be great, right?
We.....I progress into the darkness without caution, without restraint. They say that courage is to know fear and act anyway. The courage of men and women to act, woken from the nightmares that have haunted them for years is something we don’t talk about. I applaud them, and the daily fights they make to work, to leave the house, to be there. I can’t promise you that a life turning to face that fire, the one which you fear the most of all, is one which will be recognized by others. But it is the reason I grabbed barbed wire at 8 years old. If I was going to be put in a camp, I wanted to face that fear.
I pray, like Samson, blinded, tortured, beyond things like pride and meaning, for the power to lift the world. Samson wanted sheer destruction, while I want to somehow grab hold of the invisible lines of fear, of insecurity, of pain, of despair, of desperation – grab hold of the whole world’s line and lift them, so that millions, tens of millions of people will know what it is like to overcome the fear and will rise up, and things will change. That's it, the hope things will change so that I will not die in a world that is more cruel, less caring, than one I was born into.
Hard to imagine that I am bound by frustration and despair.
I thought that if your experience is like my experience then going back to work after a break kind of sucks and no one is very appreciative of what you do. Indeed in most jobs the person with dedication seems to get the least appreciation. But you roll up your sleeves anyway. So though you may not hear it at work because I am not your co-worker or boss, you can hear it from me: Good job (and if your job is staying alive and/or sane and you are reading this, good job on staying alive, but about staying sane….mmmmm, try harder! Wait, that was a note to myself, I really do need to try harder).
Over the break we made up some phrases. One is ‘follow the body’. That means with a rapidly changing condition it is best to listen to what the body is trying to say and work around the body. It beats recovering from having decided days in advance what I will do and then trying to force my body to do it. Another one I am pretty sure I stole is ‘The heart wants what the heart wants’ (that sounds like I stole it, right?). That means, sometimes at the end of the day, unless it is illegal, try to be at peace with your desires, whether sexual or otherwise (oh yeah, that's another post, DESIRE!).
On that note I thought I should put up some yarn porn for the knitters. Yarn is actually so attractive that many species (think kittens and yarn) adore it. In fact, right now, I want to thank whoever got/bought/made me the knitted finger-less hand and wrist warmers. They are striped orange and black with skulls and I am wearing them now like most days to help with the Raynaud’s (all three times I worked on this post!).
See, knitted things are very comfy against the cold, and it is always cold somewhere, that is what knitters tell themselves while stocking up on skeins. Besides, it can literally be done anywhere. The heart wants what it wants, go with it. For example here we have a woman knitting while hanging out in a forge, not the most common knitting venue. Maybe she is having beefcake for breakfast (nudge, nudge, wink) while knitting. She even has a bobbin at her elbow while knitting one of the Men of Steel a scarf, because that is what every blacksmith needs (particularly those with big mustaches!), ya, you betcha, lots of scarves at the forge (???).
As for me, I had the promise and desire to play with my Lincoln logs. They mini-logs with squared off ends much like those logs which Abraham Lincoln made a cabin. I played with them as a child in Surrey, BC. Toys were: paper, my pink rabbit, Light-Bright and Lincoln Logs for toys. Anyway, I actually had bought these Lincoln logs as a gift for someone else. But I thought they were a small set, a bit of nostalgia for them. Except what comes is this giant several feet maple cabinet with brass settings.It turns out I had got some super-duper executive Lincoln Log set which cost more to post than I paid for them, so I kept them. I had great plans with Cheryl, we were going to create the ranch of Bonanza. Actually that was her plan, and I have NO IDEA how she knows the exact outlay of the Ponderosa Ranch (too much summer TV I think!). I didn’t mention that my plan was to build the ranch and then…..BURN IT!!! Woo hoo! I mean, this way I could save Lorne Greene, the great singer of RINGO.
Besides I could also save Micheal Landon, the ‘youngun’ at the Ponderosa Ranch. Okay, now that I look at that in the cold eve of 2:00 a.m. that sounds pretty reasonable but I am sure in the morning there will be some reason I can’t follow my heart and set part of my apartment on fire. Oh wait, it is illegal. See, good thing I had that clause in there, huh?
Instead of more of that brain medication, I think what I really need is some quality time with a hug.
It is cruel and ironic that the one thing I almost never have is human contact, because most contact to me is painful. And I mean physically painful due to the heat of the person or just some sort of reaction where it physically hurts to be touched. A life without touch, without a hug, is kind of sad. I think this is one of the reasons I want a cat badly, because any touch, that physical reminder of love is something I think we all want. And once you have passed that point: the point of accepting in the bones that from now on it is just you, the pain, and the will of how long you can take it, THEN you really want touch. Not that sense of being among people but apart from them. That is loneliness, but also an aspect of so many things, whether it is dying, isolation, fear or pain. Dying is sort of a long to explain place so I’ll talk about that later, but pain is common enough to be universal. Whether it is fever, migraine, broken bone, ripped muscles, pain is pain. Pain makes it hard to think, as there are so many messages coming in.
For me it is as if there is haze plus a cloud of bees stinging me, so feeling that and trying to collect and focus my thoughts to talk is hard, and when someone wants me to repeat things, even harder not to snap, to focus instead.
I am trapped in a burning house of pain and I can't escape much less get out of my point of view to consider, “I think they are just asking for clarification” or “They look like they have had a bad day, I better not make it worse.” Or even sometimes to know where I am, or whether I am on the floor or not. Pain is the baby which will not stop screaming and whether you want to or not it demands your attention. So even trying to speak calmly comes out….intense. And it makes the funny go away, it makes that buffer of social graces go away. Because it just IS.
Yesterday my heart was severely out of order, waking me with erratic heart beats. I had to take 50% more heart medication during the day, which later depressed my heart and respiration until I passed out and stopped breathing (BAD!). Linda got that started only to have the heart go wonky again. It was a stupid cycle which ended up with me stuck in my wheelchair until Linda could come get me.
My day tends to go like this: I have a fuel meter much like a car, only mine is the one which is broken and tells you that you have half a tank and then makes you run out of gas/petrol downwind from a pig farm. So as every day goes on I have less and less to work with and more and more problems: blood pressure, heart rate, respiration – those are the big three: stroke, infarction, suffocation (the bad outcomes). So last night I worked late and there was a delay in the amount of heart medication. That caused erratics at about 25%-33% of heart beats. At 75 beats a minute that is at least 20 or more erratic beats per minute.
That feels like having someone reach into your chest and sqeeze your heart and hold it, for one second, for two seconds, then release it for a beat or two and grab it again (and that is only 10 heart beats). That feeling tends to focus the attention: as the 'hand into the chest squeezing the heart' is bad. Then my heart would have a run of 15-20 erratics so fast that no blood is pumped by the heart, that is how fast it goes, and the chambers are out of synch. That is eye popping stuff. So right now I don’t know whether I am up or down. If I am lucky I can tilt and recline my chair so my airway is clear. Often not. I pass in and out of consciousness. I can’t breath, which means I can’t scream, can’t speak. Problem is that my vascular system gets wonky too and opens or closes a bit at random. It if opens too much, I pass out as there isn’t enough blood going to my brain. But if it closes, then there is so much pressure after a series of erratics, that big huge push of blood, the life preserving measure the heart makes shoots blood up a tiny pipe under enormous pressure. By this time, my left hand and sometimes whole arm is the color of a black grape and shrivelled (as no oxgyen, and sometimes no blood), sometimes just dark purple, and meanwhile that high pressure hose of blood blasts into my brain, into every little capillary. And if just one has a small burst, I get a mini stroke.
A mini stroke can affect memory, or speech, and half or more of my body including making my face droop. That is called a TIA, which means a stroke that where operations (like having a smile that goes up equally) are back working in a few hours to a day. There are actually lots of TIA’s that last longer than a day, but they don’t have a name for those yet (so they call them TIA’s because that sounds better than stroke, doesn’t it?)
“I had a stroke yesterday.” Woah, that is Serious!
BUT “I had a TIA yesterday.”
Response: “Did you get the cinnamon with that, I hear it is pretty good?”
So I was trying, again, after having lost 45 minutes to depressed respiration, to do a little bit of the blog post I wanted to do. To chop it into bits. To be witty and fun. I mean, I am in pain and can’t be touched and so realize I am a bit miserable. Who wants to be known as 'miserable girl'? So I desperately want to be fun, to be funny. But I am having problems and while working I have some erratics and lose time and then I decide, that’s it, I’m finishing this as soon as I get up tomorrow (another story), so I shut everything down with my mouse hand, closing down the computer, the air conditioner. This is when I notice that my left side of my body hasn’t moved. Ah crap! Plus I am only using one eye. I have to transfer out of this chair to get to the bathroom and bed. I try to do that with my good arm but while I can move it a couple feet, I can’t lift the 8-10 lbs of weight to lift up the right side of the wheelchair so I can transfer to my tiny manual wheelchair (waiting for power chair people to change the weight on this). I transfer to go 30 feet to the bathroom. Previously, I have thrown myself, or fallen out the Power chair and tried to drag myself with one arm, but that doesn’t work well. Sigh.
Okay, I need to recline this, particularly if this is going to be a while and I might pee myself, also I need to move my head as near to the baby monitor as possible. That is just a few buttons held down. I start calling: “Linda? Hello, Linda. Linda!” I could try to drive the power chair but since I have bits I can’t feel (feet, an arm, etc), and about one hand I can feel but I can’t always see or stay conscious, or get distracted by pain then that is NOT a good idea (we call that the 'little chunk out of the wall lesson'). So I lie there, calling. I am not oxidizing well and my voice is weak and husky, “Linda, I’m stuck, Linda.” I could push my emergency button for an ambulance, but why? I just need to get to bed. Then the heart hit again and I can hear myself repeating something, “Linda, help, Linda, please, Linda, oh, god” but that is way UP there, where consciousness is slipping away under the blanket of pain.
How long? I don't know but after a time, Linda comes. Sometimes, it is a LONG time, but she comes. And helps me to bed. That is what happens. Linda gives me quiet time in the late evening but I am guessing that is coming to an end, as this risk and incidents increase.
Having something to hold when I am waiting is good. It helps. I think for all forms of pain and lonliness it probably helps. What a better world it would be if we hugged more things (you may love the cactus, but I don’t recommend hugging the cactus). Hug a panda, hug several baby pandas. The heart wants what the heart wants. There is a solitude which is ‘me’ time, and there is a solitude of longing. Sometimes not even knowing what we are missing until it is filled. Sometimes something that simply cannot be filled but that yearning can be distracted. How about a kitten, don’t you want to hug a kitten, or pet one? I think the kitten in her hair might be a bit much and difficult for combing out later. Still contender for cutest picture EVER.
Now, this is really important for the Seme’s out there who seem, at least in the 1,000 Yaoi stories to simply ignore or grab what they want. Picking up a kitten, a cat to take home and pet is okay. Picking up and taking home a cute guy IN a cat cosplay outfit is NOT okay, well not unless the uke wants that too (oh, and sometimes they really DO!). However attracting someone who is candy to the eye and warmth in the heart with pets (like puppies) is an age old technique. Okay, a serious warning here for both genders. We all like to look at the boobies, we like to feel the boobie. But whether you are female or male, if that isn't YOUR boobie, just because it is VERY attractive, just because you WANT it, doesn’t mean you can just go get it (and try to remember there is a FACE attached to those boobies!). That is where the ‘no illegal’ comes in. Consensual abduction and groping only please.
On that note, Cheryl, Linda and I went out a few days ago at dusk to see if we could get any squirrel loving. I had one pregnant mother who went straight for the lap and the biggest peanuts (that sounds dirty, but it isn’t). While Cheryl in her cool skull headband attracted about 5 squirrels, all of whom were a bit twitchy. This one is the ‘brave’ one, who seems to be made of rubber (it must be young to be that flexible, you know, like how you used to use your feet as a pillow while reading or read while standing on your head – wait, I actually did that!). We didn’t see many squirrels before the sun went down but soon I will arrive early and they will flood around me. Which brings up the, ‘if you are scared, don’t go into the petting area’ rule. Like not lying to boyfriend/girlfriend you love cats when they scare you, or coming with me if you are terrified of squirrels running up your leg. Because otherwise you will be the person in the back of this picture (I am the one in serenity in the front of the picture).
I think that is it right, a good job, and an explanation of getting stuck at night and then the important stuff, like hug a kitten, or better yet, hug a CAT GIRL, yes, and get all the rabbits and cats to help you do cooking. Now that is a fantasy, but still, if I could get Linda to put on the cat ears I could hug some boobies AND a cat girl at the same time. I only wish there were cats who made food, though they sure know how to turn up when it is around, don’t they?
Well, I did it. I hope you hug in. Next I will try to write the the posts on ‘Normal’, 'Desire part I and II' and ‘The Plan’ – I know part of The Plan involves me cleaning this place up. But that isn’t really fair since I am a person who would have four things out and STILL be yelled out for making a mess. True, you didn’t want to see inside of my desk at school (or locker, yikes!), and I was the person who was doing my homework while the teacher was taking attendance. I can’t help it that pens mysteriously disappear around me, along with keys, important papers that must not be lost, things put ‘away somewhere where I won’t lose it’, combs, prescriptions, DVD’s, books, the top that would go perfectly with this outfit (that is ALWAYS lost, regardless of outfit). It is just my curse.
Have fun, hug, don’t be illegal. Geez, I sound like a parent.
My apologies for the disruption of broadcasting. The lesbian sleepover went very well, all things considered, producing a goodly number of postcards, and of course the problems of the last day, waking up, “Where is my massage oil?” and “Have you seen my thong” along with, “Do you want to shower first, or shall we shower together in slo-mo mode, randomly shaking the water off our hair?”
There is a heat wave in Victoria, which means I am a prisoner of a small room. The room is with bookcases about 9 feet by twenty but I only sit in three by two feet: right by the air conditioner. Not even a window to see out. Because, for example, when I left that room to take some pictures for the blog, my legs turned purple, as I had vascular failure (my particular brand of Autonomic failure) in my legs, so yes, purple legs. And not only that, once they reached a high temperature, they were covered with Goosebumps as were my arms while my body went into shock. That was in an hour, in a room with an portable air conditioner and a fan. So yes, for all I know, the end is here, riots are going in the street and government as we know it has fallen. Someone cheer me up and tell me that is true, because then the Student Loan people will stop calling me trying to get me to sell my organs on ebay while I still ‘have viable assets’. Or do you think they have a secure bunker deep beneath the earth? That people will wander days to find a working phone for help and when picking it up, they hear, "Is that you Brad Bury? You are behind in your student loan payments, please seek a student loan officer at the nearest decontamination centre."
On Sunday by working hard on postcards I was able to go to the RSPCA Victoria branch, where I met with cats, and with the officer who does the inspections of anywhere that sells, trains or has public display of animals.
There was a shy by very cute 1 year old cat, if that. I got her a stuffie which they have around, and she was quite content to ride along with me for about half of my visit to the Cat Rooms. The cat rooms consist of about 40 cages on two walls, some of which are open some of which are just sitting spaces, then a two room wide outdoor and two rooms of indoor enclosure.
It turned out that Elizabeth (the white and orange cat), and Betsy and Murray (the psudo mother) had been adopted in the short time we were gone. I was a little sad and went to visit the one cat who I had seen a week or two ago, Jasmine. Remember how Jasmine liked to play ‘catch and eat the fingers’? Would she still want to play that? Geee…maybe. I can’t tell if Jasmine recognized me or my fingers but after we played ‘gnaw on Beth’s finger” for a while she would lick it, which she didn’t last time and I took to be a positive thing. If you remember Jasmine liked to grab, then rip off the head of what she caught. It was a fun game.
So here she is in stalking mode, looking at the finger, her deadly opponent, sizing it up. Then she pounces and comes in for the attack. Jasmine is just under two years old and is pretty lively. I have the added advantage of having peripheral neuropathy so I can’t feel what is going on except sometimes some extra pressure. I like to think that Jasmine remembered me, or my hand.
This Shelter, due to ‘Victoria being pet crazy’ is the best in Canada and while we thought we were seeing the cat area, the 40 cats we saw were nothing to the 200 housed in the building. These were the ones healing or ready for fostering or adoption. Kittens would go in days, but unbelievably, the majority of people who take kittens from the RSPCA bring them back once they become adults. Okay, this is not like a DVD rental store, okay!
The cats who were let out of the cages were of two types, first were the very friendly kind, who could stand the amount of people going through, like Rose and my new young (1 year plus) wheelchair loving friend I call Jasper. Jasper, seemed to have no problem with my new technology and soon adapted to hiding under it and watching the other cats.
The second form of cats which are let out are cats that it is too dangerous for them to be kept in a cage. This seems a little odd, but it comes from the RSPCA officer. Cats who cannot be fed, or helped in a cage need to be let out so they go find a place to hang out because they simply cannot be caged. So, the super nice and gentle and the near feral, and you don’t know which.
But the problem is that this is not where a cat is happy, anymore than one of us leaving our home likes to be in a shelter. We want a home, and they want a home: Not some place where they can’t have their own space, and people come through all the time. They would visit one another, and I suspect that ones like this who had to be shaved for disease or injury had bonded or made friends with this cat before.
Before we leave Jasmine, I should note that Rose in my lap seemed to have a vivid interest in all the grabbing of my fingers and leaping on me and biting and paws coming in and out of the cage. A real fight fan, I wasn’t sure if she was rooting for me or for Jasmine.
As you can see, the wheelchair and technology seemed to attract the cats with Rose on my lap, Jasper under the wheelchair and now a new older cat checking out my oxygen concentrator. Here is Jasper in my lap. As you can see, I am still having difficulty with them smelling my fingers, but ones with developed day vision like Jasmine have no problem attacking them and putting her scent on them but Jasper needed to smell the gloves I wore. Jasper is younger so thin and has a white paw and chest tips. Now tell me the truth Jasper, do you love my wheelchair and me for my winning personality…..or because of string? Truth is that Jasper just LOVED being around the wheelchair period. We have many, many photos where I am wheeling forward and Jasper is just walking underneath the chair. Then outside, all was good until I wanted to go inside, and Jasper deliberately sprawled across the entrance so that I could not go inside. Jeez, subtle much? By this time, the older black cat seen examining the oxygen concentrator and a large dominant black cat I called Thomas with all white paws decided to team up and sort of ‘take over’ the wheelchair, or most importantly....the string.
By this time I was playing with Harley, and yes, that is his name. Harley plays rough and he likes to play with anyone who goes within reach of his claws whether they are just walking by or not. He also likes to play the catch with claws and then gnaw on game but being older the teeth fangs were longer and Harley just liked to play harder. He quickly stopped that moving finger by grabbing it with his claws. Then Harley came in and took that plaything and grabbed it with both paws, claws out. Then it was into the mouth. There was also the roll-over technique for beheading. Since Harley was a lot larger, I was less worried for my finger but the owners would get lots of beheaded birds, animals, small children? Because this is what Harley looks like in full ‘play’ struggle mode. At this point I had to stop, and take out my handy ‘Hello Kitty’ wet wipes because it turned out that two of my fingers had some flowing blood coming from them, and two others had flaps of skin hanging off. Let’s hear a hooray for peripherial neuropathy! Here you see me cleaning my hand and bandaging it, with Thomas in the dominant spot under the wheelchair string, with the other large black cat, and now poor Jasper is playing with the footplate and the outside of the wheelchair. Blood? Well, yes, it turns out that out of ALL the cages there were only two that had padlocks on them just in case someone might accidentally let a cat out and those two were: Harley and Jasmine. Or as the RSPCA officer said, “Oh yes, Jasmine likes to express an opinion!” which I figure means likes to ‘play’ or beat up many of the younger or milder cats in play time.
You may also notice that I am not showing a lot of these cute cats, but a lot of the black cats. And while this cat is a cutie: it may be the one that was attacked by a dog and was waiting for the foster family to pick it up. The sad fact, says the RSPCA officer is that people can’t tell most black cats apart and so the other coloured cats are more quickly adopted, leaving a large amount of black cats, even cute, mild kitten type black cats like this. If you look back to the picture of me with the three black cats playing with my chair, three pictures up, you will notice that Thomas, the dominant cat, is starting a shoving match with the other older black. Yes, unknown to me, the string from my h.naoto backpack had caused a dominant terrain issue and Thomas was saying, “Hey, this is my space, and I decide where I am going to sit.” It was kind of like watching a playground fight with a bit of pushing and then backing up. Oddly, I kind of thought it was MY wheelchair. Thank goodness Thomas didn’t figure out I thought that or he would have been up to teach ME a lesson like, “You can go, but leave the wheelchair!”
Well, that was pretty much our visit. And until the heat lets up, there isn’t much I can do as the heat causes all of my conditions to increase in intensity. So more TIA’s, more seizures, more headaches, more nausea, etc, etc. But no fear, once the heat wave is over, I will be FREE AGAIN to spread my own kind of…um…presence onto the city of Victoria.
since pocky seems to go with bed days like, um, strong, red haired women taking a slo-mo shower go with an increased breath rate (Go Scully!).
They remind me of the bamboo forest just outside Kyoto where the artists, poets and other outcasts from the royal court made an artists colony in their exile.
or caused any problems.” (Linda was above me restraining from strangling me).
I was freezing! Once I got inside, then it was only an elevator ride up another three steps until the hallway to the Bengal lounge. The Conference Center which had this ‘maze for wheelchairs’ has posted next to the elevator for three steps the ‘Special Award for Excellence and Innovation of Design”. I have noticed that the further a wheelchair has to wheel, the more the designers applaud themselves. If 10 stairs can be turned into a 14 switchback series of ramps which take a quarter mile of wheeling – that is SURE to get an award.
They were playing Jazz with piano and a double bass in the corner. Sadly, after talking with the native art experts for 30 minutes, I had a little TIA and passed out. Here I am after being propped up, you can see how the side closest to Cheryl is dead and the other side of the face is compensating.
I have visited this store; it used to be at the end and have the largest collection of Inuit art outside the Canadian Government. Now they do all West Coast groups, and Linda and Cheryl found a mask by Hunt. It is sort of odd to have a sculpture on the wall by the same person in an exclusive Gallery. What we did find is that Mongo Hunt, the father of Richard Hunt and grandfather of Jason Hunt not just opened the carving shed at the BC Royal Museum, he built the long house inside (it is in the pictures of when I went to the museum – lowly lit to represent firelight with piped in sounds of light drumming and dancing). I loved hanging in that long house as a child, left at the museum while my grandparents got food for the trip back to the woods. I never thought that one man could have made it, and the totem poles inside, much less that I would met and talk to his son and have a commissioned piece by his grandson.
I know it is Jade because I have a few hunks sitting around, not quite as large as this from when I went with a couple 4 wheel drives, a chainsaw and a winch to a Jade mine where the Jade was helicoptered out. The price had dropped so Jade just sat in blocks on the ground. This underground fantasy with mermaid is far beyond anything I could have imagined looking at those unfinished blocks. I guess that diversity of vision is why I like human brains.
The back side allowed my strange mind to work as the writing says: “Hey!” cried Thad the security guard, “Take your catboy love out of the produce section!”
Catboys: “But we love the smell of catnip and cilantro” (the joke is that cilantro is my catnip, I keep asking Linda to add it to everything: hamburgers, Mexican food…….cereal.)
Here he has just finished and his laundry is done and drying.
The problem in bed days is my back (it generates heat but can’t escape, after an hour or so that means I pass out – so I have to use ice and fans to try to limit that). But for all the fantasies of the joy of being in bed, it isn’t: Physically or mentally.
I have been suicidal. I am only stopped because I can’t move enough. I spent so much energy each day working to keep myself going and yet I am pulled toward taking active control of my life and death. To die because I am not smart enough to keep myself from a cold, or because basic functions have stopped isn’t really a decision, is it? I mean, if I am not hungry and I don’t eat, how is that suicide?
The unknown in front of me is not in any way sudden, but delayed, a fear I must climb painfully as it stretches before me. It is a test of my willpower. The day I did let my depression in, the day this week I gave in, I degenerated quickly, struggling to breath, passing out, weak.
I am not allowed around scissors or knives. Not since I took a letter opener to my face, from the forehead to my cheek, right over my eye (Yeah, those months of no pictures of me). Do you think I am not ashamed, not wishing that it was something else, and that in a few moments of bliss and post exercise high, I think, I say, “I can do this” before I am crushed into the ground, my bones shattered by the weight of it.
The joke of it, right, someone who is terminal, and who doesn’t have an immune system (except the one attacking them) who cuts themselves in order to force themselves into eight or ten hours of non-stop work. I assessed I needed at least two bed days a week to get reserves to last the first part of summer. I figured that out over a month ago, and I haven’t had a bed day since there – too much to do, so much to do before it is too late. One thing I can thank my upbringing for, is to learn that almost anything can be endured. When I walked to school and passed by barbed wire in LA as a child, 8, 9, 10, I used to grab the wire with both hands, letting the barbs sink in, and found that it was survivable. Indeed, later I couldn’t understand why people put coats over barbed wire when going over fences….it is just flesh and pain. I was being prepared to be put in a concentration camp and be tortured to death. I used to practice at ripping my nails out. And no, I don’t have a high pain threshold, indeed, strong wind and even touch is painful to me. Linda said once that I might have the lowest pain threshold doctors have seen but the highest will and pain endurance.
it is so tempting. To have that something in my control at last.
They say that courage is to know fear and act anyway. The courage of men and women to act, woken from the nightmares that have haunted them for years is something we don’t talk about. I applaud them, and the daily fights they make to work, to leave the house, to be there. I can’t promise you that a life turning to face that fire, the one which you fear the most of all, is one which will be recognized by others. But it is the reason I grabbed barbed wire at 8 years old. If I was going to be put in a camp, I wanted to face that fear.
That's it, the hope things will change so that I will not die in a world that is more cruel, less caring, than one I was born into.
