Wheeling on Fishman's Wharf during 'Golden Hour'

There is a ‘golden hour’ late in the day, in the late summer where everything just looks, well, like we wished we lived in THAT city, instead of the one with backed up gutters during the rain, gray skies and constant construction.

I have been trying to get out as often as humanly possible, regardless of pain. I try to push back against entropy and the whole ‘degenerative disease’ idea. I don’t expect to win, but then, those are the fights which matter the most, no? Just to fight them.

After Linda helped me get dressed and geared up, we headed out to the Fisherman’s Wharf, which sits off James Bay in Victoria. There are two sections to the docks, the residential and commercial area, starting closest to town. Here Linda feel the sun soaking in before we hit the gangway down. The wharf and piers has a shop famous for fish and chips (the calm water making that TWO fish and chip shops), whale watching tours, and diving shops, among residential houses. Also there are slips for ships, and further along, commercial fishing boats.

The Diving shop has a handy display of cell phones they have found while diving, and on the far left of the picture there is a row of digital camera’s found as well.

With the bright paint on the houses, many far more affordable than any waterfront property ($200,000 for a house here, or $800,000 for one across the street from me). The whole effect is almost Italian with the bright colours, a mini Venice. One thing that west coasters love, whether they are on water or not are plants, and the houses erupted in flowers and vines. And often a hummingbird in steel carving or other decoration hung as well.

This house not only had plant life but had shingles covering it (the cedar ones my grandfather taught me to make with a swedish tool and an axe). Even old ironwork benches and rocking chairs had been turned into planters. This houseboard had a cat which owned the place and prowled around. A houseboat owner down the wharf came out with his dog who barked and ran at the cat until the cat turned, hair fully expanded and gave it THE LOOK. Everyone laughed and one said, “One day that cat is going to catch your dog, what then?”

Two piers down from the houses are the professional fishing boats. Now that the salmon, tuna, crab and other seasons are done, it is pretty quiet. The boats range from small boats to a larger net hauler. James Bay used to be where the industrial was placed (including the paint factory where my father got his job), but these fishing boats are the last jog to our memory that the inner harbour isn’t all condos and tourist hotels.

The Victoria Harbour is one of the most busy by size in Canada if not the Western Hemisphere. Planes take off and land regularly, usually taking people back and forth from Vancouver on a 30 minute schedule (government managers usually). For boats the Coho docking downtown for 50 years, the Victoria Clipper, heading out to Seattle by hydrofoil, and the Victoria Express doing a passenger only service to Port Angeles. Of course there are also sailboats and the long ocean kayaks coming and going, plus the whale watchers boats and other power boats. Around the corner near the coast guard station is where ocean liners line up to dock and unload passengers for a day stop (up to nine of them stacked out at sea).

The harbour is due to be dredged and widened, as determined by the FEDERAL government. The city and the local government sued to avoid that, and lost, so a 50 year delayed upgrade to the harbour WILL happen. I don’t know how the planes will take off, as there are three different companies flying from the Harbour. A plane lands or takes off every few minutes (here is one floatplane from Harbor Air just landing), and how the control tower determines the approach with all the boats, I don’t know. But I do know that when the harbour is foggy, they fly over the hill instead, right over our apartment. The advantage is that the float planes can go from ‘downtown to downtown’ in about 30 minutes, which is about 4 hours quicker than by car.

Here is a different company, Westcoast Air, using a larger and different float plane, a double propeller, revving for the taxi to the signal rock. Once at the signal rock, the plane waits for the go ahead from the tower and then revs for full take off, you can see this one just lifting pontoons between the sailboat and the returning whaling watching boat.
The problem is that just around the corner is a rather small entrance into the harbour, also where all the gasoline and explosives are stored, so you really want to make that take-off. But the pilots do that, and then turn sharply while lifting heading toward Vancouver (this take off lane is headed toward the US across the Georgia Strait). Here is an example of a Harbour Air plane just about to clear and bank.
Of course, being BC, there is always interaction with nature. And if you were interested in Fish heads and guts, then this would be a good place to hang out. No, not just talking about seagulls, but seals. We saw three while there, but two were further out in the water, just poking their head up. Here is one along the dock waiting to see if we are about to dump something good.
One of the reasons that Lower Vancouver Island and Gulf Islands are a world destination for divers is the extreme clarity of the water. When the water is clear you can see down twenty to sixty feet as if it was just a foot or two down, as you can see here. The seal finally surfaced and popped up, mouth open in a ‘feed me’ expression. Before you think I am going to be the ‘Seal Whisperer’, I really don’t want to envision me wheeling down with a wagon filled with buckets of chum and guts to the wharf. I will stick to squirrels and peacocks (and peachicks).

Time to head home, and write this up before I forget. If anyone knows the name of the planes, I would appreciate it. When we have some money again, we will return to get fish and chips, or maybe BBQ. Right now, I am just enjoying going out in the sun.

Elizabeth: the year in video, a gift from Linda and Cheryl

Linda and Cheryl made me a present. I could tell because when I woke up, they were always running off chortling into the other room, all over a few weeks. Very pleased with themselves. They gave it to me this weekend, and I wanted to show it to you. I am not sure where they go SO MANY bad pictures of me but if I hear you using any as screen savers (the bad ones, the good ones help yourself), I will be heading towards your city and your computer baseball bat in hand.

It made me happy, it made me nostalgic, it made me darn confused (some of the pictures I am in, I don’t remember AT ALL), it made me wish they had let me vote for some of the pictures. But this is a picture of Elizabeth from two people who care about me, and have seen me in good times and bad. Some new readers haven’t seen many of the faces of Beth (the not so great ones), or how much weight I have lost, just in my face. Of course the dark faces, the faces of hell and pain, they are too busy doing things to take pictures. Sometime recently parts of my hands turned black in a matter of a couple minutes. My face was terror then, and calling for help. I don’t know what happened after (probably seizures or something), but there is nothing like watching your hands turn shades of black over 20 or thirty seconds. But it is in the end, I think an interesting mirror of me. An interesting mirror more of Linda and Cheryl who are there, caring for me, being there so I can be there, always watching over me: My companions.

On Dying and Living, and 18 days.

The last few days I have been trying to focus on posts where I don’t always look passed out, or in pain, or feeble, because while that is part of my world, perhaps a majority, it isn’t all I see and do. And Luminara, as well as going to the Moss Street market and talking in Japanese to Yoko (she is from the prefecture just above Tokyo – here we are talking Punikura poses!) are other aspects to my life. Admittedly I only have these public parts because I have a partner and lover, and a very good friend (not yet lover!), who support me medically and physically to make it possible for me to have those experiences.

I even still have enough humor, on some days to make a “Oh sir, pity a poor, poor crip like me!” face; or is that my winsome face? Or the puppy dog one? I sometimes get them mixed up?

At the moss street market Linda was trying to convince me that the pink fu-fu headband with fluffy pink fuzzy was actually “ME” and would make a great addition to my skull headbands. For some reason, probably because Linda is such a bad liar, I was not convinced. What do you think, is the pink fuzzy that screams, “I want to be a ballerina!” really ME?

We dropped by the bank Saturday and I asked Linda to take a picture of us posed by this old Dodge (1930’s?) as a typical “Victoria experience”. Victoria is a haven for old cars and collectors as you get a $25 “collectors” driving plate and with the seniors, there are lots of 40’s and 50’s cars tucked away in garages until the next generation finds them (same with those silver Gulfstream trailers).

The reason I have been doing posts like that is because the last few days/weeks have been full of conflict with Beacon, and doctor’s orders. To leave a weekend of going out and then go back into micromanaging new caregivers, and spending most of your day's energy getting more tests, and again, more tests is emotionally hard.

Now that I have had a seizure in front of the doctor, he cancelled the anti-seizure med he was prescribing THAT DAY, because now with these additional tests he may find a better medication. But until then, he would be delighted if I could have seizures in front of everyone, and record how many I have this week, be put in an observation unit. While now, after 17 straight days of tests, meeting and activities, and going into another two appointments tomorrow, I AM having a seizure or more a day.

But the pain of always more, the finality of where it is giong, the overwhelming stack severe “ideopathic” things like auto-immune diseases and so much that pulls emotionally and literally at me is too much. Having to explain in detail, how each system is failing, three times a day as Beacon has pulled all my regulars and now I have to explain to each new worker, explain how they could fail while they are there is a hammer of my mortality, my own fragility. To then have to listen to then give yet more advice like going to a herbalist who did wonders. Or "Have you seen a neurologist?" (One of Yesterdays' workers) Or explain that no, this isn’t a condition they just found, it was observed in 1900, it is just nothing so far works. But two treatments HAVE been tried with limited success (in the US). But that I, like the disease Alzheimer’s (in Canada ) can’t be officially diagnosed until after death.

If you want to die, stop reading now. Because I don't. I may have thought I did, until I faced having mini stroke after stroke until my mind was swiss cheese and though function after function is lost (today, I tried to eat and choked instead), the body drags on, like a beast toward Bethlehem. T.S. Eliot was actually a bit of an optimist; because death and the end do not always come quickly, and so it is not a whimper, but a prolonged moan, with sobs and whimpers.

I do not want to die and inside of me there is a child screaming, “unfair, unfair, unfair!” No matter how horrid a person is, do they deserve this? Linda or Cheryl or both have used the ambi-bag this week. It is a bit waking up to being hit in the stomach. Turns out the ambi-bag, which breaths for you does not care if your gut or lungs get the air. So you tend to tense and resist as a first sign of coming to awareness, of self breathing.

Today was a seating clinic for an electric wheelchair; an indoor chair (which I can take outside) with head rest and tilt for seizures. They built it so that I cannot flip out while in a seizure, as I did in the doctor’s office (and still have nightmares about). When I protested, Janet, the blunt speaking but probably more effectively caring person over this last year, said, “Does that mean you will want to be wearing a helmet then?” She is the first person who does not want to observe, she wants to solve.

Janet is the eternal optimist, except on Friday when she saw me again for the first time in several months. I had lost more weight, and we explained the medical situation. She had to turn away while she said, “And you were the person who came to me a little over a year ago because you were falling down.” But then, between then and today, she sucked it in and came back with getting a chair for me that would enable me to keep writing, to use the computer, to get to the bed and bathroom AND to go outside and use it with my limited hand function, and when that fails, she is ready for that too.

I did not know until today how little feeling or control I have in my hands. I ended up having to roll my left thumb (strong hand) sideways over the on switch to stop double to triple pressing or over-pressing and turning the chair on then immediately off. I could use the thumb and join of the index to drive forward but had to learn how to use my shoulder to back up.

The chair will be rigged so that it has an indoor headrest and an outdoor one. It will be rigged so that I will have not only head support but as things progress, I will be able to maneuver the chair without a sip and puff or a cheek joystick but with micro head movements. That however could provide an interesting demolition wheelchair if I have that feature turned on AND then have a seizure.

I’ve learned a lot in my 17 months as a manual chair user. I’ve done a lot and I hope I still can do more. Janet is moving my Wheelchair report to the top of her list, and will be hounding Blue Cross for me. She says she WILL get approval from Blue Cross in three weeks from today, maybe two; and for me, a person who has had a chair less than two years ago (they don't approve chairs except every five years). I don’t know what she sees, but she seems sure of it and if she can get that approval in 1/3 of the time, that means only extra six weeks until the custom order is delivered (two months optimally). The way she talks, it will be a bit of a race between my ability to transfer being lost and if the electric arrives in time.

That seating clinic took three hours and I had a seizure. In typical fashion she and Randy (wheelchair guy) conspired to convince me that I had somehow agreed to order the chair in Barbie Pink while I was unconscious. As I couldn’t talk my hoots of displeasure amused them. I indicated that I wanted purple, and pointed my good finger (post seizure) to the skulls on my shirt – Dark Purple with skulls!

I lay this afternoon for more than an hour trying to sleep, on valium and pain pills but could not. The voices talked while I lay thre. So when Linda came home she sat on the bed and listened, helped me while I unburdened and cried. In some ways, I can and am already ready for death, in the way one makes a list and does the chores: Given Medical Power of Attorney over – check; Arranged a will – check, Arranged a living will – check; started making special bequests known – check, talked to Linda about going on a trip, back home, leaving this behind, after I am cremated, at least for a week or two, so she is not alone – check.

But then, some days, in the quiet, I realize, that while it feels the same like when I am about to walk out the door on a long trip, like I looked around at my stuff before the trip to Japan. That feeling I get, making sure that most things were taken care of, realizing that I wouldn’t see my books or DVD’s and never got this project or that finished in time; that whatever is, is and it is time to go.

But then it sinks in. This isn't just a checklist, or a trip. Because I won’t be back. And the weight of that rushes in.

I have fought, and fought, and fought, and fought and right now, going into day 18, I cannot fight anymore. With my care agency, with the doctors, with the specialists, with anyone who wants me to suck it up. You come here and suck it up; you go between appointments up to the Y to force yourself to exercise to keep that circulation going, and then overheat that night, and yet after 6 hours of sleep get up for 5 more hours of medical appointments. No pain specialist yet, three pain pills left. I have fought and fought, and fought and what did it get me? What treatment am I on? What more is asked that I 'should' have done?

Oh yes, due to all those test, now we know how many different parts of me are non-functioning or failing. The times I am not testing I am instructing or explaining to new caregivers what doesn’t work, and what that means. I cannot escape it, it surrounds me. And yet, I want to escape it.

I have lost a year with Linda due to those tests and fighting. This week, last week, I have lost 10 days I could have send postcards to people I care about, to people who are alone, who are housebound, who are lonely; I could have MADE A DIFFERENCE but instead I was on the medico treadmill.

My GP won’t use the D. word but he doesn’t talk beyond five months; indeed in a town where EVERYTHING takes nine months, I am getting my tests done from the ordering of them in 2 days, getting seeing my new specialists in six weeks instead of six months after he talks to them. What do you think he says that makes only one of two specialist in town put me at the top of the list? That convinces them I can’t wait 5 months?

I was and am tired, exhuasted, in pain and I cannot escape. There are no tricks, there are no moves. I will not fight anymore today. Or tomorrow. I will send postcards. Becuase that is what I want to do. Though as my careworker last night said looking at my little desk and the box of postcards, “Not much of a life is it?”

It is LIFE, though, isn’t it? And that is enough. And that maybe someone smiles out there because of how I choose to live, while I can continue to find and send postcards, it may not be enough, but it is something. I have been working on another project. Maybe it will have some use, maybe it won’t. For me, Xmas and Birthdays, this year, are when I have the energy to celebrate. That is now. This is my Xmas.

I know that every day, or night or activity in which I stress myself could be my last. I also know that I have a body built of exercise done almost every day (or four times a week after disability), of never smoking or drinking. And I believe that I still have a long way to drop. Yeah, I’m below a lot of disabilities now; a partial quad without traumatic injury among others. But the heart beats on, and I can get a pacemaker when it doesn't, and the lungs breathe, and I can, it seems get a diaphragm pacemaker, if I find anyone who knows how to install it.

I want to see the cherry trees blossom again.

Right now, I get heat stroke at 22 degrees centigrade and Frostbite at 13 degrees centigrade, yes that is far above freezing (as Cheryl or Maggie will verifty if you don’t believe me). I cannot survive traumatic amputation, or surgical, not without a lot of transfusions and some luck. So, as Janet, the diabetic said, “Be glad of the bits you have while you have them.”

I asked Linda on Saturday to get pictures that day, that weekend which showed me living. Living in that day. Because I am moving toward death, and I can either, in pain and exhaustion, be dying. Or I can live, in pain, and suffering, yes, but live, the hours and minutes of smiles and getting to know people, using my gift to talk to people. To joke, to see the grass and trees, the cat crossing the street, children throwing tantrums, people angry on cellphones; and on the other days, to live, even in a room, closed off, writing postcards, writing blog posts.

I love living.

O that there were more to go around.

Luminara 2008: PrimalFire, Poi, Fire belly dancing - the Music Video!

At Luminara on Saturday July 26th (well, we didn’t home until it was technically Sunday!), Nick Woosley and Playpoi were advertised as giving the performance, but the group Primal Fire gave the final performance for the night out at the Cricket Grounds. It started at 10:40 pm (well, 10:45 pm). To get there, I had to go through Beacon Hill Park, and cross the road. I then dogded the steel fenced and a place where the spectators usually sit on the grass slope. It was a nice STEEP slope, and Cheryl was with me. I thought I might try doing flips sideways, to edge down the slope one wheel and wheelchair width at a time. But I told Cheryl (and all the guys and skaters by the fence) to get back, WAY back. After my first flip around, I held one wheel and let the chair weight flip it around, only to find the slope was over 25 degrees, probably over 30 degrees so my downhill wheel wasn’t touching anything! It was in that AIR! So either I topple over and over and over down the hill or I let go. I let go and just hoped for the best (the field was all in pitch black, in preparation for seeing the fire show).

Cheryl reported the guys were going, “OH MY GOD!” and lots of that, and “She’s going to crash!” (It took me like 10 seconds to get to the bottom), and “Oh no! She’s crashing, Oh my God!”

Except I somehow, except for one bump where I had to lean back to stop front flipping, made it down. As the momentum rolled me on I raised one arm in my electric glow rope, muti-colour chair and gave a surfer “kowabunga!” waggle to let them know I made it. Up at the fence the guys were, “She made it, did you see that, she made it!”

Anyway, I know how to make an entrance….or break my legs (they were strapped in, remember), depending!

Cheryl played the crip card one we got to the crowd and asked, “Can SHE see too!” and so then I was up and at the front of the roped area. I took mostly still images with my camera and Linda took movie and now I have my little editor working again so I made a nice 2 minute movie of the best of Primal Fire at Luminara 2008 (When I made it I believed it was Nick Woosley and Playpoi via Luminara site, sorry - if anyone knows how to change the text IN a video, let me know). Here it is, you can get a bigger version to play on Windows Mediaplayer or Quicktime if you want by clicking on the Vimeo logo. I hope you enjoy. (done to the French Song ‘lolita’ (if uploading is down, click on Vimeo to go to it directly)
Luminara 08: Nick Woosley, Playpoi & Fire! AMV from Elizabeth McClung on Vimeo.

Tomorrow I will try to make a film with the best images of Luminara 2008, Victoria along with Elizabeth’s tricked out glow wheelchair films (Linda filmed the wheels going round for example). And then give you the whole A-Z. Right now, I am off to the hospital for my CT or CAT scan, dunno – one of those!

Luminara: Fire Dancing, Fire Belly Dancing, Blue Angels and my Bling Wheelchair

Hey, we just got back from the Luminara Festival which takes place once a year. I am beat so I have these few photos, and will give you the full story tomorrow, okay?

First, while I napped, Linda and Cheryl worked together to Bling my wheelchair into an Electric Parade, taking it apart to put glow rope everywhere.
So then I was up and we were off, Cheryl with glow-sticks on her cane and me with my bling chair (very, very popular with the kids who wanted their parents to get them one).

Luminara is a family friendly, almost accessible event once a year where Victoria does not act like it has a stick up its ass. It is the collective “alternative” for goths, geeks (I was told that “I had the wheelchair from the future!” by one nerd), drug users, Ren girls (in big Ren dresses), pagans, as well as anyone who wants to wear a costume. It is in Beacon Hill Park were across the many ponds are scattered displays, like this Torii on the duck pond.
There are also fixed light displays, like these drummers. The festival starts to finish at 11:00 ish but we didn’t get back until midnight (then I had a seizure, yada, yada).

There are also groups which combine costumes or moving events, like the BLUE ANGELS, who are these girls dressed in blue, (lots of Blue) which are lead by drummers which turn it into a giant rave. Because crowds, many of them high, follow them. One guy stopped in front of my chair and just kept saying, “The COLOURS! I mean, you have THE COLOURS!” until his friend pulled him away to follow the drummers.

We continued on because earlier in the day at the Moss street market, thanks to the influence of Neil, we talked to some people selling Poi, including Nick Woosley of Playpoi. Well, not a lot of people get into giving advice on how to do fire poi to a girl in a wheelchair in less than five minutes (use kevlar and wear cotton!). He told us he was performing at 10:40 at the Cricket Ground and there we went, stopping to take a picture of the Native Haida Village, with long boat and long house display.
Then stopping to take a picture of a Japanese drum with the reflection in the water (lots more pictures tomorrow!)
Well, Nick and the Poi fire Dancers were pretty darn impressive, like this guy who lit up this wooden staff, started twirling…
Then he throws it into the air….
And catches it going into a double wraparound of his back, his head down, doing spins and wrap arounds on his back with little balls of fire flying off from the speed. It was pretty impressive.

However, that part was followd by the...um, to be blunt, EROTIC fire dancing. First this is a married couple came out, with dance music, fired wooden staves and then started to dance.
And then WHILE dancing they got..um…close…and starting using each OTHER’s body for wrap-arounds (spinning their staff around their partners back and then back into their opposite hand). It was HOT, like erotic hot. And I said, “We could do this at home!”

And Cheryl said, “I don’t think your building manager Fran would be too happy.” Sorry, but fire IS erotic, and a married couple doing an erotic dance WITH fire, I was…um…aroused. And then SHE came.

Remember how I dated “danger girl.”

Well out come this girl with all the raw sexuality of danger girl, barefoot, a couple scraps of clothes on her with a steel hoop at 7 to 8 fire balls on it, and then she starts doing a hula thing with it going around her hips as she belly dances around the field.

“I got to get her number.” I say in a husky voice, eyes transfixed.

Cheryl sort of smacks me upside up the head. “You’re married!”

I look at the girl rotating her hips on the field, a ring of fire rotating in time to music and make a little moaning mewling noise.
So yeah, it was a pretty good night. Tell you the whole story and hopefully a Fire Poi and Fire dancing video tommorow? Have a good one!

In local news….

Cheryl helped me do stickers for some of the new people wanting postcards before we got ready to take our boat trip to a foreign land (with MANY tattoo palours!), Port Angeles, USA. The customs officer asked, “Are you taking any medication?”

I think about the bottle full of opiates and other drugs and start stuttering about my oxygen and before I can finish they wave me through. Dude, I have a med-alert bracelet, what do you think?

The purser helps me and I show him my mega bruised arm full of needle marks and say, “So what do you think, ADDICT, or someone with a lot of medical treatment?”

“What?!” he says.

Cheryl goes, “I can’t take you anywhere.”

Later I have a seizure which stops my breathing and Cheryl hurts her back to help me sit up, or LIFT me up so I can breath. Since I can’t talk, I practice American Sign Language with Cheryl. We are doing okay but of course, the people around us think that we are deaf, or I am. So I am showing Cheryl how to do ‘slang’ ASL and we are doing this dialogue in slang:

“Hey, Cheryl, ya want a beer from the fridge?”

“Yeah, okay!”

When one of the women watching whispers, “It’s such a beautiful language.”

I sleep, I get frostbite in four fingers (it is not freezing, it is just I have crap circulation), I use two of my oxygen bottles (need that concentrators) and manage to buy some more stickers for my postcards online WHILE away from home (I have an addiction! Prepare the intervention!). And I write up the nine postcards so they are all ready to go.

Tomorrow is the BBQ and then an early boat back to make sure I don’t have to be hospitalized. Maggie was, “How do you have frostbite!” I don’t know, in case you haven’t noticed, I don’t control the fingers going black, I don’t control them going white with loss of feeling either.

Linda saw a grey whale coming over. I saw a break of something, but seal, dolphin or whale, I couldn’t say.

Have a great weekend. I actually am NOT nauseous right now, so this is a good hour. Savour the good hours!