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.
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