Monday, June 27, 2011

Katy Fogg's Stoneware: Weekend Market Adventures and Linda's Job

“Linda, it is a SUGAR bowl.”

“So?”

“So what would you use it for?” I asked her looking at the $40+ price tag.

“Uhhhhh…..” She gave the little one shoulder shrug, “Sugar?”

“And the last time you used a ‘sugar’ bowl?”

“well…ug….it’s really pretty.” I stared her down and she said, “A few years, okay!”
I had to see this bowl (bottom right) which she went on and on about when I had given her money to go and buy some pottery from Katy Fogg of Living Earth Pottery at the James Bay Market. She had bought stoneware vases and a small vinegar dispenser. I still ask her, as she takes it out to admire it, what she was planning to use that for. Spending spree was one of the gifts I gave her for her birthday. But it seemed that Katy had more pottery Linda wanted to buy than she had money. Katy had used the winter to make lots of new and nice mugs, vases, decanters, plates in a variety of colours: lots of new and wonderful things like the milk jug pictured below.

The two vases, blue and green in the original picture above were newly shown this week and only because it was a cloudy day did they not sparkle (like the milky way, when in the sun or the right indoor lights) with the iron and other crystals in the entire body of the vase. The tops of the vases are coloured by geodes of Willemite (made of silca and zinc and grown through 16 hours of 1000+ centigrade heat. The top of the milk jug uses a glaze of Rust Crystals which during the 14 hour constant heat firing turns into different colours and strands flowing slowly over the surface.
After travelling around Europe and driving down to San Diego, I realized that Victoria has so many artists that those here are under appreciated. I write this after having my Amarillo and brandy in cherry heated over my vanilla ice cream, another mix by Whimsical Jams ($5 a jar, and make diabetic flavors on demand – hand picked organic berries) picked up at the same market.

I had tried for a month before I could get out to see Katy Fogg, because the Market only runs in the summer and I wanted Linda to have the largest selection of choices she could. Towards the end of summer tourists and locals, find buying a $20 stoneware mug pictured below crafted with clay from Medicine Hat Alberta and Northern California is better than one from ‘tourist alley’ at the same price. Katy uses local beeswax (Salt Spring?) in the glazing, all of which are non-toxic. They are durable for oven, dishwasher and microwave (not the iron ones please!). Remember these pictures do not show how beautiful they are, due to poor lighting. The large pieces and vases are the kind we saw in Oregon and California for two and three times the price (or in Laguna Beach for five to ten times the price) without the elegant and functional ‘cool’. Much less the durability of being used and washed by different care workers daily.

Essentially there are so many good artists, organic growers that we are spoiled an used to seeing eight pottery artists on a Saturday. For me, I am exacting. I need pottery which is like a swiss knife, a waterman fountain, a Thermarest or Danner Boots: it needs to be always work, it needs to be something made beyond profit: functional obsession. In pottery that means Good clean throws that are consistent and easy to use. To find someone who has spent 14 years going beyond that, adding the beauty but keeping the basic form and firing which made Stoneware so popular in the 18th century and sells them for $12-75 is astounding.

Before I was ill, I slept on the floor because of the scoliosis (using lung pressure to stop my spine from locking while sleeping) using only the Therma-rest lite. I used Therma-rest for over 14 straight years. Every night for over 5,000 nights whether camping, in open air, in bedrooms. And if it failed, they replaced it (the lite didn’t fail, through it did fray in fabric after 9 years so they replaced it free). And that’s what I experience in Kate’s work. And that's why I keep coming back.

With the summer here the flower and organic food sellers had come out with stalls. Linda and I we picked up some basil for the small window garden we are going to try. We also saw Laura Victoria who does handcarved and handsculpted soap (all soaps without artificial perfumes for those sensitive or with skin conditions) had created a new flavor, the lime. It was delicious in scent. Laura-Victoria has been making soap for 28 years. Linda took a lemon of hers into work, to help create a nice aroma in her new office (those who work with her couldn’t believe it was soap, actual all natural, hand-milled soap). I got some bars to send out as presents.

Linda’s work? Well, while it doesn’t quite cover the costs it does have some advantages like going off to check out a light-house. Linda works with the Islands Trust, the go-to person for asking questions about the 400+ islands in the ‘Inland Passage’, the space between Vancouver Island and the Mainland (and 400+ is only half way up the island). So if you want to clear trees, you have to apply (someone clear-cut too many trees against regulations and later there was a landslide – that’s why there are regulations). Each inhabited island has their own rules and regulations. One of her first questions was whether there should be a blue badge disabled spot in a parking lot on Salt Spring (one of the Islands nearest to Victoria). The answer was yes, 5% of all parking lots need to be blue badge. In contrast with Victoria, BC there are 28 designated parking spots in downtown Victoria’s multi-thousand spaces (in James bay there is….one, in Fairfield there are none): “The City recognizes that the demand for the 28 new dedicated spaces may, at times, outstrip supply.”

As a perk, Linda gets to go to any island for free once a year (no ferry charge), but also there are trips to islands for meetings or lunches. She went last week on an office trip to Salt Spring, then a boat to Galiano, on which she saw two eagles.Here is one, you can see him on the top of the tallest tree, the water far below and he is a bald eagle, the dark form and white head atop the highest branch. In Galiano there was a trip to Montague Bay, a park leading to the ocean. Some officers in the Island trust work with residents who want to turn the land they own into a heritage of a park. Remember, this is the ‘new west’ out here and while the government is still selling off parts of islands, first and second generation people who bought government land on islands are still figuring out what to do with the land they bought. So new parks all the time.

This is VERY different from our last home in Cardiff, where the nearest notable park was Roath Park donated and built by the Marquis of Bute in 1887 (with odd clock tower in midst of lake with boating and all). It also has a very small conservatory with horny turtles (we came in upon a turtle orgy…in slo-mo).

The Marquis not only owned all the land (including where our Victorian House was built) but many older widow women spit after saying his name. From the 18th to the 20th century the Marquis grew vastly wealthy on ‘black gold’ and still runs trainloads of coal right UNDER the university down to harbor. Since so many died in the mines that during WWII accidents you had a greater risk to casualty as a ‘conscripted miner’ in Wales than you did in the Armed Forces (which created a huge strike). The Marquis, simultanous to Roath Park built Castle Coch, a fairy tale castle which, in the end, was never lived in.
So you can see how different it is when you buy 5 acres for a few thousand and 60 years later there is so much development you can leave a park as a legacy (thankfully no wacky castles except the two in Victoria, Hartley Castle, also built through coal money was covered in a previous post). And with lots of neighbors, someone has to answer the questions and settle disputes. Linda is that first step.

The next day we worked on Postcards, and passed the next 100 mark (6,200?) with 22 postcards and 8 presents. I have been using up some of the stickers from Japan, Sinapore, France, Brazil, and parts of the USA including those bought in Hawaii. Here is a combo of stamping and stickering for a summer festival look.
I have a lunch date tomorrow so off to bed with me. Hope you had a good weekend also.

Friday, June 24, 2011

Breath, Wheel, Fight, Dance

Sudden prolonged weakness. Too weak to move, hard to breath. Linda and a care worker use the sheet to roll me in bed. I lose almost two hours. Linda tells me I had problems breathing, stopped breathing. She breathes for me, holds me.
I was going to go wheeling that day. I twitch my head to get the worker closer. "Tomorrow" I promise her, "I'll wheel tomorrow."

It might take 2-3 hours to dress and be ready but I will wheel. I am going to be in a 5K within a month, then a 10K, the women’s cancer 5K and Terry Fox 10K.

This week I found a new foundation: the seven people doctors in who study autonomic failure diseases have created this foundation together. They are just now starting on a drug trial, a drug and control group (group that gets no meds) for finding a drug that helps. I think about the Hospital which specialized in Parkinson’s and MSA-p, and how the director told me I needed an autonomic specialist

“Where? Is there one here?” I asked and she promised to look. But she never found one.

Three years later and there is the start of one. The doctors are looking to base themselves in one or two locations. I want to live long enough to know that there will be something other than pain relief and gatorade for the next person who gets this.
“It is a cruel, cruel disease.” Linda said to me today. It is, cruel on both of us. It will be studied at last, medicine at last, not while I live, but soon maybe.

They found three patches of Fentanynl on me, left from previous days. Oops! The patches burn into my skin, so I have to use aloe afterward. You can see the burn on my neck in the previous post. Linda added the adhesive cover patches to the wish list.

We use covers on the Fentanyl patchs because I don’t lie in bed like others, like they expect me to. I move, and wheel, and exercise. One day I’m going clubbing.

“I want to video my workout next time.” I say, “I don’t think they would believe it. I’ve haven’t had a care worker yet who can keep up with my exercise. Not even the first 20 minutes.”

“I don’t think the readers know what you do to survive.” Linda says. “I couldn’t do it.”

I use my hand to rub between my nose. “If you want it bad enough…”
I am rarely at the computer now, either far too ill, or if not, I am up and 'doing.' When I am here, I get my fix of good films and plan my next moves. Also I watch this, so that I remember to keep fighting, and dancing.

Here is my remedy! So while I go dance with the Enemy, you keep on moving, ‘kay? And turn up the volume! ("...everybody seems to have given up hope of trying. I haven't. It isn't easy and it isn't supposed to be” – Terry Fox at 3,113 km)



Tuesday, June 21, 2011

How to make a miracle; even as it crumbles

I have edema of the brain.

My grandfather, dying of MSA, had a shunt a few months before he died for edema of the brain. I’m not getting a shunt, but I’m not going with Linda to see my nieces and nephews at the anniversary. The relatives got her a sale plane ticket, and in Canada, if they bought it with my name then Linda could fly free as my care giver.

But the pressure of the plane going up would likely kill me with edema in the brain causing a massive stroke. That is what my doctor told Linda.

I didn’t know. I was told just over a day ago that Linda would be taking her vacation time and I would be going to a home, a ‘care facility’.
There is no joy in learning that, only loss.

For over 180 days I have been fighting my edema. I was about to blog my progress, in between bed days, on how this is what my leg and ankle looks like. Yes, my leg is thin and about as thick as a pack of cards, the ankle can be circled with a thumb and forefinger but it isn’t giant and bloated. My face looks like it used to, and my extremities are thin and healing. I am wearing my wedding band again.

My edema is a combination of the collapse of the cells themselves but also the failure of my circulatory system. Once awake my ankles, legs and torso slowly lose against edema until I sleep again. But it is a start.

I exercise every other day, boxing once to twice a week along with steam rooms, long wheeling and exercise hand cycles. It hurts but I have wheeled to the Beacon Hill Drive in, to downtown and back, all in the night when it is cool. I was entering the Canada day 5K, my first since 2008. And a 10K in August, two of the three I need to justify the cost of renting a racing chair from the Wheelchair athletics association.

I wanted to tell you earlier that this girl was going to fly but I wanted to make sure it was more than just once or twice but now three weeks of exercising and going out wheeling three times a week. So, a girl’s gotta try, gonna fly but still gonna die. Turns out that this isn’t a remission just the end of months and months of trying and trying until now I am out there: outside, where life happens.

That’s why I need and am working to get new bottles and freeze bottles (there are two layers, you put it in the freezer, then put in the water before you go wheeling - ice cold drinks to bring the core temp down while wheeling in summer), I have them on the wish list. Gloves too. I just split my last two pair in the three weeks of wheeling. No gloves. But I'll find some. And I am going to wear them out wheeling.

I wanted to make a miracle.

I can do things that would have been a fantasy dream only a couple months, six months, a year ago: I can wheel to the Ross Bay Cemetery and back. I love being outside, and I want it to last as much as it can. But it is not spontanous remission and the cost is very high. Yesterday I exercised until I passed out completely and upon waking go right back to my count of doing pushup's balancing atop the back half of a half yoga ball. I'm screaming from the strain, until I pass out again (I dind't make 35 on that one, just 16 until the first pass out and another 7 until I passed out for long enough for my care worker to roll me into recovery position). So during that, and later I bleed from my ear, my nostrils, blood bursts in my eyes, and bleeding from anus and vagina, plus pus from the eyes out of the tear ducts and sinus: those high blood pressure ruptures are just part of the cost. I’m forcing all that this body can give and far more than anyone would believe. But I’m still dying. The heart, lungs, circulation and brain are failing, all systems. The bathroom plastered with blood stains, bloody cloths, tissues, and clothes: part of the miracle.

I still die alone.

But not today and not in bed.

I hate to lose and I'm losing. But I have now, and the lighter body makes it easier, a little more energy, and I hope to blog post more, email more, write more, postcard more, send gifts and thanks more. And to live and love with Linda more.

I still send out postcards, a few at a time. It is harder, but I keep going and there are so many beautiful cards to send to beautiful people. The same with the thank-you notes for the birthday gifts, they go out a few a week because I measure my energy in weeks, not days or hours.

Also an ebay auction sale, it is finishing Sunday, there is manga, anime (a great baseball one and a cult out of print BECK’s) and films from Korea, UK, Japan, and the US. There is the fifth season of Rebus (out of print) of 4 DVD’s in Scotland being both charming and that rakish drunk detective the British do so well since Sherlock took drugs when bored. One film (Sign of life) is about rescue work in Tokyo after an 8.0 earthquake, another is about the last great Empress of Korea in 1895, and the love, unrequited, between her and her bodyguard – it is a part of history that is worth knowing in the high production The Sword with No Name. It shows the expansion of the Japanese ‘empire’ into Korea and the Queen who faced down several empires to preserve her country. She is still revered in Korea today. Also is a new BBC series, already filming series two about the family who owned Bedlam coming back and converting the old asylum into luxury flats. They are trying to cover the grandfather who tortured and illegally operated on inmates. There are so many angry ghosts and Jed, the adopted family member who as handyman tries to communicate and appease the ghosts before killings. Turning asylum into apartment wins WORST IDEA EVER! But the architecture is lovely and creepy both with all the old Victorian splendor, sort of Steampunk Insane. Because the new 'it' thing isn't just a reserved and elevators in your apartment complex: having a Victorian cemetery and children’s cemetery too is a MUST (But warning, patients dumped in asylums, raped, forced to have children out of sight of society and then they and the children being experimented on makes for REALLY angry ghosts).

It is a pretty good series as I am remembering and thinking about it a lot. I'm looking forward to Luther Series 2 and The Shadow Line (from Amazon.co.uk), except now in Canada we have no post, as the postal workers went on strike THEN the owners locked them out (The advantage of dementia is that the surreal seems normal).

The ebay auction is to save money for emergencies, which abound, including Linda’s root canal today, which she found by doing ‘Bike to Work Week’ – the cold on the teeth brought about infection and pain. This produces a ‘WHY?” to the divine that biking to week equals owing $800.

Oh, due to degeneration of the frontal lobe TV and films are VERY intense for me and Stargate Universe Season 2 was amazing and so sad it finished. Any series where geeks have the bridge of a millenium old starship that dives into the out part of stars to slingshot forward and recharge energy is great. Where one got there by winning a game on dialing a 9th chevron is better, and the jokes about ‘That movie Star Fighter is SUCH a liar, my Halo playing means NOTHING!’ even better (In Star Fighter, an arcarde game once one calls an alien race to collect the ‘ultimate starfighter’ – it was the hope all young geeks). But both that and Royal Pain 2 (the two best TV DVD sets so far of those released in the early summer) left at the end in an unresolved way which no amount of staring at the screen resolves (Boris is a jerk!).

I am watching Haven, Stephen King's series of a weird town in Maine, which happens to be full of Canadians with THICK Canadian accents going, "So you're FBI eh?" and "Best ya go visit the Moose Farm." (actual line from Haven)

So, to bed so I can exercise and wheel again. Outside at night is not bad, as I saw five raccoons the other evening. Oh before I forget: terminal degenerative diseases suck (pass it on!). The dying part is a collection of random sinkholes of loss and despair that keep showing up no matter how hard I try. But I keep fighting.

The Power of Myth, fine as it is, misses women entirely (wha? Yeah Joseph Campbell, who wrote this post grad in a cabin during the depression, and likely didn’t see many women – but woman have myths beyond ‘find the guy’ and ‘have babies’). And one is the eternal warrior. She is driven, and has no peace, rarely any modicum of normal life, whether Joan or Zenobia, Hua Mulan (recommend the two disc special edition DVD in the UK for a good version of her life) Maria Rosa or the Trung Sisters. Unlike the ‘heroes journey’ she has no hope of acceptance, or long lasting history, the odds are almost always overwhelmingly against her and yet in each culture, these women fight anyway. I think much like Loki, whose eternal suffering and writhing creates the earthquake, so the summer storm’s thunder is the Eternal Warrior in battle against the Foe of all names.

I hope when the last race is wheeled and the last battle fought that I rest in Taigh na Banaghaisgeich, translated as ‘Amazon’s Home’, an ancient structure in St. Kilda, Scotland. Far better than joining a bunch of drunk Viking guys in Valhalla.

Thursday, June 16, 2011

'Wish I knew you' - zombie caretaking

During part of the testing, to check my awareness, I was to list all the things starting with F in a few seconds, I started, as fast as I could with my inhibited speech: “Fabric, French, Frog, Fibernachi sequence, Filibuster..”

After the seconds, when I was blinking in frustration at not adding ‘Fermat’s Last Theorem’ or ‘Fermat’s Little Principle’ (Okay, I’m a math geek, If I had read the hobbit recently I would have said Frodo but I forgot!), the RN, a woman the same age as me or a few years younger gave me a point for the F-word, “Everyone thinks it, you didn’t say it but I will give you a point any ways.”

Then she continued, “Gee, I wish I had known you.” Which led into her knowing about Fibernachi and the 12th century man from Pisa who published Liber Abaci and introduced the idea to the world.

It stuck in my head, ‘..wish I had known you’ because I was sitting right in front of her. I was still alive (honest, no zombie caretaking here!). And I was still mentally active and aware and yet, for a person assessing the mental function of palliative individuals, I was already gone, not dead perhaps but as good as.

‘Invalid’, as a ‘client’ or ‘person under care’ I am talked about, talked over (as an EMT and Linda literally talk to each other over my head on the weekend), or tolerated but I am, for this society, functionally gone. An ‘invalid’ is a person who is sick, who needs care and disabled, but it is also a word which means void, without cogency, without substance, deficient. The word comes from the latin ‘valid’ which means strong and ‘in’ which means ‘not’ – and so from times and generations before the idea of an invalid is tied to someone who has no voice, due solely to strength. The community already accepts that there are those who are not part of society, yet who are not dead, but not heard either: they are invalid.

We all have a voice, but as the film ‘The King’s Speech’ illustrates, society is well trained to assign ‘sub-par’ to anyone who is different. How a speech impediment makes a man not worthy to be king, or to be a lesser king is an idea which has not changed in hundreds of years. Richard III isn’t shown with a hunched back because of diversity and acceptance but because the Christian misinterpretation that ‘imperfect outside means imperfect inside.’ But the difficulty doesn't diminish a person, it only allows them to show abilities in overcoming or integrating it.
With one new worker a day (including today), while two of my regulars are on holiday, I am bombarded with being laughed at, mocked, made to be a punch line or told what my reality SHOULD be. ‘Time for dinner!’ my worker says at 2:30 in the afternoon.

“No, time for breakfast, as I just got up.”

“Breakfast?!” with a peal of laughter, “Far too late for that.” She was not good in adapting herself to her client (me!). Good workers do, bad workers would have us all be disabled obedient robots, eating at the same time, having the same problems and the same solutions.

The thing my regulars know is that ‘The schedule follows the body which follows the disease.’ – and when I get up, there are things I need with my first meal, which is breakfast, whether that is as 2:00 am or 8 pm. If keeping a strict schedule of ‘wake now’, ‘eat now’, ‘go out now’ would keep me functioning better and living longer I would do it. But at a point in the disease, when ‘will power’ can’t make someone with MS not have a spasm, or someone with Parkinson’s not have fog, it can’t make me have the 9-5 life either. I follow the disease so that I can live the best quality of life while not dying. And it has kept me in the 'not permanently dead' area so far.

While I am in need of care, I am not a person who is morally weak or weak in intent or purpose. My body is not ‘failing’ any more than you are ‘failing’ by growing a day older (people have loss of function in old age too). True, it does not function anymore, and some systems are not working correctly, but I am not a disposable person, a discard. There is no need to wish you COULD HAVE known me when I am still here. A person who is unable or unwilling to give value to my words by lack of waiting to hear them due to my being speech impaired, reveals how that person judges others: superficially.

In a turn about, I woke yesterday not with ‘word salad’ (where I know what I am saying, or sometimes not, but it comes out as words that don’t connect or make sense), but where everyone else had word salad. Or more likely, where I had scrambling connecting my hearing to the language center. But to sit and hear Linda in earnest telling me ‘drub libble scan turolo blat, ver iplico snlort!” convinced me that I could likely assist her speech best by going back to sleep. Three hours later, she was cured (she claims that she was speaking normally). I nod reassuringly, as advised by all the pamphlets on ‘care’, and then converse over her head.

Friday, June 10, 2011

Sleeping life away

Linda hand-fed me yesterday when I woke at 10:30 pm. Our plans of exercise, or an evening out, like all the plans this week put on hold. I was too weak to hold up my head, or use my arms. It was my first meal in many days. I was, after two hours, strong enough to be up for a few hours.

Monday night I thought that this was going to be the best summer since 2008. The edema was going away and I was wheeling again, I had worked up a schedule in my head on the amount of practice wheeling and then my first 5K in years, I guess. Then up to a 10K.

I went to sleep thinking I would wake up a few hours later, but I woke up 12 hours later, the Beacon care worker for the day having not come Friday either. A week gone by but I have just a few hours experienced in it, otherwise paralyzed or sleeping.

They talk about the weakness and sleep needed toward the end. Is that it, or is it from the dehydration, the lack of food, a couple meals for the whole week, and no IV. Will I wake tomorrow to find I have slept another 15 hours, and have 6 hours up or back to having my 12 hours awake each day? The only way is to lie down and take that chance.

Sometimes you can do everything ‘right’ and still end up getting weaker and weaker. If you have seen Porco Rosso’s the film by Ghibli (subtitles recommended!!, UK version best), you will know what ‘A pig’s gotta fly’. It means that for some, you are what you are regardless of how the world spins. And you know it because you carry the weight of it. It feels like a burden when I am immobile, sometimes it is your curse, but when you fly it is what makes you complete. To compete, without reserve, is how I fly.

It was good that I went from Epee Fencing to Wheelchair boxing. I was used to getting hit, I didn't know that I needed it, wanted the challenge of high speed chess of the mind and body with a penalty of a bop to the nose or lips. It is who I am.

My parents didn’t come to my basketball games, even though I played on three teams at the same time. “You’re not from our family line,” they said to me when I woke before them every day to practice for an hour by myself in the gym. “There are no athletes in our family tree.” I was a stray dog. Good at nothing but still going back for more.

After the ball of my knee ground into inside kneecaps, and I couldn’t walk, or sit, and woke from pain every night. Marfan’s made my body hurt, as the muscles were slowly stretched apart for every day and every minute from puberty until now. That’s just the way I grew. Too tall, one side longer than the other. And after the knee operations, the doctors said, “Be very, very careful because we cut away so much muscle, if anything goes wrong, there isn’t enough to repair.” So I did downhill skiing and ran, and ran, in the morning, in the middle of the night around and around the Rose Bowl (3 mile course). “Don’t know where she gets it from…” my mother said, and my father shook his head at my ‘waste’. I hated myself because what I had been taught, and the thoughts banging around inside of me meant that the love, attraction, and how it made me feel, knowing myself as well was what my parents, my school, my community, and my God hated about me most of all. When I felt that way I ran. In 110 degree heat I ran.

A 10K used to be my daily ‘slow’ warm up before the later run of 18K or 25K or a sprint of 5K or 8K. I ran, went to uni, worked, ran, slept, got up in the middle of the night and ran and then slept the rest. Every day. I had no significant talent. I was going for ‘qualifying’ times.

I have run tens of thousands of laps, I have cycled thousands of miles in triathalon training. “What is possible?” Is all I wanted to know. “What IS possible?”

I found that in trying to find out, I ran into no shortage of people who told me what was ‘impossible’. Strange people who delight in other's failure. I also learned I am the best coach for understanding my body movement. The US 10K champion also had a leg 1.5 inches shorter than the other. I am used to biking dozens of miles to get to basketball games, playing then biking home. I never quit, I never failed to show.

I probably am equating sports for something, and I really don’t care, all I know is that I will always be the person striving to gain the highest endurance and putting out the highest personal energy in any training or sports room. I plan, I practice, I try. If I fail or not is never as important to me as being there, as trying.

I will fly again. This girl has got to fly.

Thursday, June 09, 2011

Beacon Home Support, (Victoria B.C).: Where ‘Care’ becomes ‘Callous’

“Who do you want?” The voice at the end of the central line asked irritated (250.658.6407).

Beth: “The supervisor’s manager please, I’d like to make a complaint.”

“They aren’t here.”

B: “Um, yes they are, it is ten minutes until end of shift (4:50 pm). I’m naked, I’m on the floor, I need oxygen, I haven’t water or food, nor have I had care for two days. I’d like to make a complaint.”

“(sigh) They are here, but they don’t want to talk to anyone, they are off soon.”

“Who DO I talk to about complaints”

(pause) “I’ll put you through”

CLICK “You have reached the voice mail of Beacon Community Services, please input the four digit number of the person you are trying to talk to…or press zero to return”

(different voice), “Hello”

B: “Hello, I called to make a complaint but was put into the voicemail system, can I please speak to a manager.”

“They have all gone home.”

B: “It is 4:55 and they were there five minutes ago.”

(long pause), “They don’t take calls after 4:30”

“I am naked. Naked. I haven’t eaten in two days. The worker (temp as regular is on vacation) didn’t come yesterday.”

“Hold on……”

Night RN: “Hello?”

“Hi, My name is Elizabeth McClung and I’m naked and on the floor, I have no water, I have had no water, I am desperate.”

Long pause, “Elizabeth….you had care today.”

“Yes, and though I asked and asked, she didn’t give me water…or food…or panties. In fact I spent a 33 minute conversation with a manager there about it. Do you know who that was?”

“No. This is the night nurse, I can’t do anything for you.”

“I’m helpless, I have had no water, which my condition requires, no oxygen though it was asked for repeatedly, and no food, and I’m naked. NAKED.”

“No, you’ve had your care. I could send someone to you.”

Beth: “Thank you.”

Night RN: “…except you are three hours over for this month.”

B: “I am over for the month coming up?”

“Yes”

“How can I be ‘over’ for care for the next three weeks of care I haven’t even gotten? Can’t you take some off.”

Night RN: “That is not Policy.”

B: (desperately) “Did you count that worker that NEVER CAME yesterday? And the worker that had two manager calls on them today? The one who didn’t give water?”

Night RN: “No, you had care today.”

I start to talk but am cut off as she continues, “I’m the night RN, I can’t discuss policy.”

B: “So should I tell emergency that ‘Beacon sent me?’”

RN confused: “What do you mean.”

B: “When I call 911, do you want me to tell them that ‘Beacon Home Services told me call.’”

RN: “But it isn’t an emergency.”

B: “I am end stage with a neuromuscular disease, with no oxygen, and I have had no food or water for two days, I’m stuck naked on the floor and according to you and the manager I want to complain about, I’ve HAD ‘care’.”

RN: “Can you hold on?”

B: “YES!

15 minutes later, Linda comes over, and put on the oxygen, and asks me what I am doing. I try to tell her, she gets the drift. After finding out how long I’ve been on hold she says, “I’ll call them on the cell phone, they sometimes just put you on hold if they want to get rid of you.”

Beth: “No. Really?”

Linda gets through, “Hello, my partner Elizabeth McClung called you 15 minutes ago, can you tell me where you are in regards to resolution of that issue? Oh?”

The never ending hold music suddenly ends, and the night RN is back, “I’m going to try to connect you with someone.” She says and leaves me wondering what she was doing before.

I finally connect to Supervisor Rational. In fact that’s what I say, “Thank you! You’re the Rational one.”

I had talked to two supervisors, one when the care worker was there for an hour, a new and temp worker (as I was still naked, I had no water and no food, nor did it look like I was going to get a bed transfer and after five asking for water to which she said yes, no water), and the second when she refused to leave or help but OCD’d on washing the same dish over and over again (which I think might be why she is available for filling in for vacation shifts). This was the first supervisor, who had told her to get me water, food and clothes, and authorized extra time. I explained that she didn’t, but would just keep washing over and over again, and when I called in to report this I was threatened by the Beacon supervisor who said ‘Now dishes has been a reoccurring problem, you aren’t asking her to do dishes used by Linda?”

“No,” I told her, “I asked her NOT to do the dishes, the note Linda left asked her NOT to do the dishes, I need WATER, it hot day after day and I haven’t had water for two days, or care, I need water.”

Wacko Supervisor: “It still seems that the dishes are a problem though.”

B: “Has ANYONE made a complaint of dishes? I know of only one complaint of dishes THREE YEARS ago, and you saw my apartment, I have exactly 26 inches of counter space…how many dishes is that?”

Wacko Supervisor: “Yes, three years, an on-going problem.”

Beth: “Water?”

The next 33 minutes were spent with the supervisor reading my care plan which says lines like “please do not rip chunks of hair out of Client’s scalp when brushing”, and asking me where the care plan was, then going into a panic because it is in a red holder on the fridge when the folder is yellow. There was much furious typing about whether it was at ‘eye level’ or not. Care? No. But I passed out so I guess that is how the call ended, as I have no memory.

Rational Supervisor: “So she didn’t get you any of those things?”

B: “No. I asked for panties three times, but no go, water five. No, no food or water, or clothing assist or oxygen.”

“We’ll make sure never to send her again.”

B: “Yes, but again, now past 5:30, no food, no water, and no one yesterday.” I pointed out that when Beacon came to force me to sign waiver on all task 2 for workers (like if they give me triple the amount of drugs and kill me, they aren’t liable – if you don’t sign it, you don’t get care), I got a signature from them which accepted all liability for task 1, which includes food, water, oxygen, dressing, showers, etc. How did they want to pay? In court? With VIHA? Or could I get someone to HELP ME.

By this time I was exhausted and Linda took over. The individual was to call her back by 7:20, so she could get a nap. He called later and then asked if I was lying, “We are having some inaccuracy in reports.” Well, yes because when I told the worker after almost two hours that the manager wanted to talk to her, she opened the fridge instead and took out the water and said she had been trying to get me water. Linda confirmed that no, no one had come yesterday and that I was paralyzed all day due to the pain and heat locking my nerves and muscles and could just lie in bed in pain for 27 hours, not even sleeping. And that she had found that the worker had taken the note, folded it and put it aside, including the writing on it, “Do NOT do dishes”. Wacko Supervisor had earlier been obsessed with the fact that she didn’t have a copy of the note, can that I fax to her.

“Well, I’m on the floor…”

Wacko S: “I’ll try and get it from the case manager….”

It has been rather up and down here, if up means down and then further down. I didn’t think anything could be worse than those hours lying there, unable to cool off enough to sleep, in extreme pain. Not able to drink Tuesday, I was desperate to drink on Wednesday, if only the worker knew how to pour water. Am I dehydrated? Check. Have I not eaten a meal since Monday? Check. (Linda did break three small lemon cookies into my mouth, and watched to make sure I didn’t choke on them, at 4:00 am Wednesday Morning, as I couldn’t use my arms or hands). Are my fingertips purple, and hands dusky with the last two fingers purple to dark blue/black? Check.

How do you avoid this from happening if you are alone as I am most days? Check into a facility EXCEPT not just EVERY worker but others who get care from Beacon say, “Do NOT check into a facility…if you want to live.”

Why then could not Beacon Home Support send someone over to do what the person was sent to do, help me get in bed, get water and food? Because according to them, the worker HAD been sent, and if they didn’t do the tasks, as the Wacko Supervisor and RN Night said, “That is something we look into and get back to you?”

Beth: “When? Like Tomorrow, two days, three days? How many days until I can get underwear?”

Previously, when asking the Executive Assistant of Beacon Home Support of the CEO Isobel Mackenzie (also trustee for the Victoria School Board, so enjoy..) if ANY worker had been let go for incompetence, she said she was unaware of a single incident. Wacko Supervisor had told me that if my workers couldn’t understand me or English, to have them call her. Which begs two questions: why send workers who can’t understand English to a residence with all notes in English and two, how am I supposed to tell them to call her?

Because Beacon is subcontracted by VIHA, a government body, even though Beacon Care is the ONLY care support for the City, there is no way to make an official complaint. As only those in VIHA can have a complaint done against them (though due to backlog, the 30 day required has been stretched to six months or longer for a reply). So there is no complaint system in place at Beacon. And though it is requirement on paper that VIHA not Beacon if annual ‘satisfaction’ surveys are not done payment should not be made to Beacon. But none have been done as long as I have been able to find anyone receiving or giving care. The Manager at Beacon said it was ‘due to cost’.

When the file for a person with a known late stage neuro-muscular illness (they were aware of my status in the limbo of entry into pallative care – requiring letters from many people away on vacation) shows up and they say they are on the floor, and haven’t eaten, drunk water, or received the oxygen the condition requires they say they ‘can’t’ send anyone. Why? They ‘project’ my care will be 3 hours over the allotted hours by June 30th, so no one can give me a drink NOW, not until the NEXT care worker comes. And since the worker came then those hours are credited against my hours, whether they worked or not. And it is a policy and no they can’t explain it or discuss it.

The network of family caregivers and those receiving care paint a picture that would result in a class action suit in the USA, as they service over 6,000 ‘clients’. But knowing for example that I need oxygen, the Wacko Supervisor had me talking for 33 minutes until I passed out. The more they talk, the closer to 5:00…..I mean 4:30 and end of shift. While no regular staff is on during evening or night, when the highest amount of medical problems will occur.

I have the strongest feeling against hypocrisy and wonder if Beacon’s parking lot even HAS a blue badge spot (if typical of Victoria that would be a no). However, besides the half dozen thrift stores, several care centers, homes, meals on wheels and all ‘client’ care (but no way to make official complaints?), Beacon now issues the Blue Badges required for parking.

Linda says they don't have Blue Badge spots as they don't like 'Client's visiting the offices. She worked hard to find the parking lot at all.

Beacon also is in charge of Triumph, the 'agency' that is supposed to help those with disabilities find jobs (they don't), but has no contacts, no lists, just the 'behavoir training' written about on the BBC in from subhuman to able bodied (one of many experiences with Triumph, they changed the 'contact' webpage after being linked in the BBC)

Beacon RN’s, managers and supervisors who have forgotten that it is people not numbers, and people who are at their most vulnerable and desperate, need the kind of fiscal spanking and humiliation that they so oft provide (at a cost of $35 an hour) to their clients. The imp in me wishes to get better so that with an outline and a spray paint can of blue they would arrive one day to find no parking…..as every spot in the lot has magically turned to a blue badge spot.

Sunday, June 05, 2011

Worth the effort?

Ha. Hard day, and got some help breathing. Thanks. The heat is growing and some of the new meds are changing me. The edema is coming off of me in pounds, my lower legs are thinner than my knee cap and up top I think I got downgraded from B cup to A cup. I literally change every night, collarbones back and clothes hanging. I'll try to get a picture tomorrow after boxing. Is this good or bad? As Linda put it, it will be easier to move me when unconscious. Easier to wheel the 5K too.

I know, we know this is my last couple months, maybe a year or 10 months if I am really lucky. But there are times, like when I fall backward into the darkness and I stop breathing and they are working on me and when I open my eyes twenty minutes have passed. And the times two people are working on me or four people, or the ER, with machines hooked up everywhere and I think, "Am I worth all this effort?"

Then I think, "I better be." Like Milton says there are some who only sit, but I have little patience to wait. I box. I write. I exist, and that is worth fighting for.
Been listening to Mumford and Sons: four guys (including a double bass player) who are like a rockin' Maddy Prior/Carnival Band - I recommend full screen if your connection can. As one comment says: Guys with beards make good music!


If you decide you want the album (like I did), it is on Amazon for $9 (As they are from the UK it is 8 pounds on Amazon.co.uk - so a bit of a bargain for the US).
Or get Sigh No More download
- all 12 songs for the same price. (329 five stars)

Wednesday, June 01, 2011

‘To’ instead of ‘From’

“Coward: A person who lacks the courage to do or endure dangerous or unpleasant things”

I endure, but only because I fear something worse. I am a coward. I don’t want to die.

If I spend life only being afraid or avoiding fears then that life isn’t mine anymore. I may be skilled at surviving, and I may sacrifice choice and dignity or endure what others fear, but for what purpose?

And so with a cowards’ cunning, I am skilled at surviving, sacrificing what others don’t consider, evading, plotting, and above all, keeping a few heart beats or breaths away from what I fear the most: death. I said to Linda, “’To be with loved ones’ post death, that’s my nightmare,” I shuddered, “Ug, spending eternity with Grandmother ‘helpfully’ ripping my actions and decisions apart to tell me what I did wrong with my life in detail”

In ‘Ne Le Dis a Personne’ (Tell No One’: the winner of nine film awards) the protagonist Alex gets an email at his pediatrics office eight years after the murder of his wife Margot. The email only opens at 6:15 pm, and shows a CCTV camera atop an escalator. A woman stops and looks around, then stares for two seconds into the camera. She is Margot. Alex, a man who has a job, a car, an apartment, everything but what he grieves. As he searches for what, why and most of all how with this and other emails, he is framed for murder with the police closing in. But Alex believes he is close to finding about Margot, and has an appointment that might mean seeing her. So he runs.

In watching this grand French chase scene, I about how different a person looks when they are running toward something than when they are running from something. Alex did not scramble, did not waver, and did not look back. He was running towards love, towards the dream of reunion and end of the long grieving. How could a criminal, a coward, thinking only of evading, match that?

What about me, am I running towards something or away?

Away.

I survive, but in not dying I am running from living and I don’t know how that happened.

When did I lose my passions and vocation? When did my life reduce to a focus on not dying, no more hospitals this week or delaying degeneration? Maybe it happened during the 15 months of scratching by, the fear that sets in when there are days and then weeks without all the medications, or even the important ones. Or was it because we kept running out of food, juggling money to keep the power on. Or did I lose focus in the two years I didn’t have a GP: or the twenty months without pain control? Pain is like the water which cuts through stone, as it erodes you day by day, smoothing your life into a hazy drudgery.
At some point I sacrificed the freedom to dream. Yes, I’m alive, but without the aspiration beyond simple survival.

People describe their goals and dreams in different ways: some speak as if it has happened, some speak soft and shy, lest it scamper out of their life, some talk boldly, their defenses already up, guarding the hurt inside. And then, over time, that description changes, until it is mentioned with an embarrassed laugh, when and if it is mentioned at all. Others talk about it with a smile because they found something on that journey of aspiration that was worth stopping and building around: stumbling into unexpected contentment, which have us repeating with wonder, “This is my life.”

But ‘this’, a collection of medical emergencies or things I do to avoid dying isn’t my life. It just happens to be the situation I exist within.
Linda, in her generosity of kindness, devotion and compassion gives me the security and comfort of our home serving as my ‘care home’ (for whether it is public, private or other facility, my disease now requires near full time care in a controlled environment). She also gave me, as a birthday gift, the grace of choosing to dismantle the emotional wall of protection she built over the two years of hospital trips, emergencies, specialist who gave up, and the conversations with ‘white coats’ about the specifics of my death.

Nothing I am or have done deserves her gift. MY life is better because she is with me, not just physically, but as ‘one flesh’. Linda’s choice to grieve with me, to wound with me, and live without emotional defenses with the person she loves most of all as I experience the late stage pain and degeneration. She bears this in order to share the joy, tedium, frustration, compassion, spontaneity, kindness and humor fully as my partner, my lover, my friend, my companion. She is running towards me.

What am I running towards?

There is no going back to ‘before’, not for me or for anyone, you grow forward, not backward. Neither we or this planet can ever stay still, the only things captured in amber are those long gone.

Langston Hughes in the poem ‘A Dream Deferred’ asks what happens when our dreams are deferred for us socially. But what about those who spend too long getting beat down just in order to survive?

Medically, I have hopes that one of the greatest medical problems from the last year is now in relapse. And if that stays true, then I will enter this summer with more energy to ‘do’ instead of just ‘be’. I don’t get any more energy or time, but in teetering stability, I will have my energy and time to spend elsewhere.

I have goals, barely visible. For example, I’d like to qualify for the Boston Marathon. I figure no reason not to dream big.

In order to qualify I have to be able to wheel a marathon first. And that means I need to wheel a 10K before that. So I am aiming to wheel a 5K. And I have an agreement that if I wheel more than two 5K’s before late autumn then we will look at renting a racing wheelchair again. And to that end, I have been wheeling outside by myself once a week. I can do 1.5 km now.

It takes a lot of planning and ‘doing’ to reach a dream.

I am tired of surviving. I want to live, and that takes risks, both emotional and physical. Even now, exhausted and in pain from my 70 minute workout at the Y yesterday, I want to shake my brain like a snow globe and see what dreams become clear as the rest of stuff that clutters life settles into background. Curious to start living.
Yeah, I’m back.