Friday, March 30, 2012

Worst Day Since Yesterday: laugh/sing with me

It was raining all day, but I went out tonight with Linda to exercise, even though my hair was a sight and then some. Exercise is good. I can now do over 30 full push-ups. I found some Columbia shoes/boots with stiff/solid toes. I get my body in position and drag the feet forward then back so they are resting on the solid toes. Then it is just a case of inducing a seizure lock in my quads and then pushing up. Since I have long arms, it seems pretty far up there.

The first week I tried this, it didn’t work. I’ve been working on it for months, adding a few push ups each time. I still do the rest of the 100-150 pushup. Today was the first time I was able to do a full lift of the body in a fist push up. It really strengthen’s the arms and the stomach muscles. And I need the arms to pull me up, push me off the toilet, transfer, push me out of wheelchairs, seats, etc. I have this tendancy to fall, out of wheelchairs, off chairs, beds, toilets, just about anything. It is official: I am a klutz.

And the stomach muscles are to lower the pot, keep the intestines bound and moving and maintain some control over the bowels. With everyone from GP to specialists still in the ‘Gosh, that’s a complicated disease, I don’t have a clue what comes next or how you stay alive’ – I’m the one who needs to keep going.

Afterward I do 8 minutes on the treadmill as that gets the heart going strong enough to flush the blood and broken cells out of the feet and arms. It tends to itch in a ‘my feet have been covered by an anthill’ way. Then it goes to, ‘oh gee, I’m Joan of Arc and someone set my feet and legs on fire’. Thankfully, I have my mp3 player, which gets me through the worst of it. Just today I added 20 songs including Fake Empire by the National (from Ohio, USA) and Challengers by the New Pornographers (From Vancouver, BC) and Slow Club’s ‘When I Go’ (Linda says she’ll hold my hand: band from UK). After a minute past the defrosting of feet from a week of walking on ice, I stop, the treadmill carries me to the edge. I fall off (this scares the staff). Then I retie my shoes as the edema is now gone. And start again.

Holding onto the sides or front arm tray, I do several minutes on an incline of 5.5 to 8.5 which the machine tells me burns 717-800 calories an hour. It is this which got me down to and up from the beach. I was going a stair at a time, and sweating heavy by the top...where, between huffs and puffs I could see a guy standing at the top staring down at my boobs the entire time, right to the last step! Hey, I wanted human interaction; that’s a KIND of interaction right?

On the treadmill, I mostly push a bit the speed to sweat, then slow it down. I do this because it is low impact, it strengthens the quads for mobility and the stomach and lower back. I do the walking at night in front of the window, which due to light behind, acts as a mirror so I can see if my leg starts to walk off the treadmill.

It is an odd feeling, to watch yourself weave around on an incline without feeling the legs or feet. Then, in the shower, there is a body search for dead or rotted skin. I had several places where there had been rubbing and the had been torn and worn for several days, hanging in pieces and strips. ‘Look Linda,’ I called out, ‘I’m a zombie, ARGGGGG! BRAINS!’ Yes, Zombie Beth wears a kimono (still slave to fashion).

We laughed. Who would have thought a year ago I would be laughing about using a loofa to scrub off dead or decaying flesh; my flesh? But then, there is a time for tears and a time for laughter. I've had my fill of tears, so there will be laughter.

Here is a song that Linda and I can both identify with. I hope youtube hasn’t added commercials. It reflects how I feel about my body changing and the theme of Sakura-con is goth loli with h.nauto and three or four other top designers coming, as well as hosting a high goth tea. I will take pictures (except the tea which is $50 – but for those who paid $380 for a dress much less $50 for the fan, then another $100 for gloves, stockings, and don’t get me started on shoes…..so it is a full Gothic Loli peacock ‘look at me!’ scene – as the heroine of Kamikazi Girls would say, “How Rococo!”)

I have the clothes and corsets, just a body which changes hourly with Edema, and while Helen of Troy’s had the face which launched a thousand ships, as this song says, ‘with a face that was launch to sink’ and

And this endless crutch, well it's never enough
It's been the Worst Day Since Yesterday

Here is a link to a Stargate Universe version. Join me in laughing, and singing, no matter how bad it gets.

Thursday, March 29, 2012

The devil that can't be beaten

How do I say what everyone knows but doesn’t know at all: that degenerative diseases are the devil that can’t be beaten. Linda struggles to keep the rent coming, the food and medicine there. Even on the best of days it is like cycling uphill, always uphill for three years now. There are sick days but never ones that are paid for, nor vacation days.

I am exhausted, Linda is exhausted. “Help me..” she said after the medical alert woke her, and she went first to tell them I needed no help. I had woken in the living room after days and weeks of stealing from day after day to try and find a good day, I was on the couch overheated, alone and unable to move.

‘Please Linda, I have to be allowed to get worse.’ I had said before I must have passed out. For weeks and months I mark where I am falling further and further behind, in organ function, in daily function. She hears this as criticism, while her silence makes me feel alone.

‘Help me…’ she says when she tells me that I must get up myself. Which is what I do, for this year I have minimal to no practical physical assistance beyond meal prep, and changing pain patches every 3 days (I had the doctor change that as illness and our mixed schedule meant that when it was every other day Linda would forget, and I would scream, and scream unending for hours until the vocal cords gave out). I get myself up when the alarm I set goes off; I get myself to the bathroom and then to the study, and I have no interaction, no direct assistance from workers beyond meal prep and washing clothes. They have not assisted showering even at the Y this year, nor, in the last few months accompanied me.

It is easy to feel isolated and in an unfair situation. But then isn’t Linda in an unfair situation as well? And beyond that, there is no physical assistance, no going out that I don’t initiate, or go myself. And with Linda working 12 hour days, how is she to find the time or energy to do more? But now I have no workers who can tell when I have overheated, or when told, know what actions to take. Unless I direct what to do, what buttons to push in other rooms, nothing occurs. It is not good, it is indeed horrid, but it is what life is. I have the pain and the pushing to be up, though now I am focused and obsessed with trying to ask Linda, the Palliative people, the GP, anyone to have an idea or make changes for when things get worse. But everyone says they ‘hope I go in my sleep’ which is not a good thing to hear when awakening overheated once or twice a week in winter and early spring. And when lying there, the heart not beating enough to allow me to wake, nor to let me sleep but continue minute by minute, hour and hour in pain.

I do not wish to be reduced to selfishness but am exhausted, in pain and scared every waking and sleeping moment. In my dreams last night I walked a city alone, exercised alone, to wake unable to move and alone. Making it to the study, I fall, and my arm is trapped under my body as I fall, it sounds the medalert alarm, and while I can’t move, still overheated, as without telling Linda to bring a cool pack or a cold neck pack she cannot act, exhausted herself. She says things are fine to the medalert people. I ask why she doesn’t call VIHA, the night RN, the palliative RN, the emergency response team, but she has decided they will only pass the buck to the EMT’s, the EMT’s to the ER, and the hospital cannot help this. Maybe she is right, or maybe she feels it isn’t worth the trouble and she wants to sleep.

This is what life has been like for 9 months or so, but worse, as the disease gets much worse, and I cannot keep ahead of the most basic things. So I don’t see outside for two weeks, don’t see out a window. Linda puts me in the study and goes to bed, and so I don’t ‘talk’ to her but a few minutes a week. And every day I fall further behind, and I don’t know what to do, and there is no one to call. I have to think about taking pills and overdosing because soon I will not be able to take care of myself, not be able to answer Linda’s or the workers calls to ‘help them’ and the ‘solutions’ book I worked with Linda to make has not been opened by her for two months, not to add or find solutions.

If I was in Limbo, that would make sense, but I am not. I get worse, and the stress of weather, the stress of a trip coming up when I don’t know how I am going to sleep much less eat or shit makes it more of a nightmare than a dream.

Back when Linda had stress time and paid counselling and sick leave and vacation time she talked about reading to me in bed when things got to this stage. Last year I could have had a bed day. Now there isn’t a worker trained in how to have one, much less the fans, hospital table or pills set up to allow it.

This is what I have not been talking about, though it has grown from something I had the luxury of thinking about to the question of how much will I bleed and from where before I sleep enough to be strong enough to shit. I am tired of helplessness and losing 2 days for going for wheeling on the beach. I am tired that Linda can see it week after week but not recognize that I am unconscious and so try to wake me every 40 minutes for 4 hours when I sleep past 7 or 8 hours on the day after I exercise. I don’t know when I am going to fall ill, or be unable to wake, and Linda, so exhausted that she cannot adjust to anything new or different as it occurs. If there was a hospital to check into, or a group to take over, I would; for both of us. But no, if I was a senior citizen I could have a non-profit take over basic caregiving decisions, but no, there is nothing for those with terminal illnesses.

And any organizations that did exist were wiped out 3 years ago when the government of British Columbia went bankrupt. And we, along with all the small non-profit agencies and the jobs of those with them, are ‘friendly fire.’ It is just some bleeding out takes longer and so unlike moving, as many did, we stay and linger, somehow.

Monday, March 26, 2012

Waves, Pebbles and Driftwood

I had a lovely even' on the beach. But first, letting you know I am selling a few dozen recent DVD sets on ebay to raise some funds for Sakura-con (they mostly Region 2 so you would need to have a multiregion player or use software on your computer - but some like True Blood are region 1). Yeah, Sakura-con is in two weeks…what a slacker, eh? I am adding four to five more sets a day for the next couple days so I can send them out before Easter weekend. I get region 2 for variety but also better resolution, as it is PAL which on a 1080p HD comes through with clarity, unlike US region 1, which counts for the three DVD frozen planet documentary series with David Attenborough, super!

Selling them at 25-50% less, there is a broad choice: Whitechapel is a surprise success with detective and murder historian joining forces to understand murderers who are replicating historical murders (Kray, Ripper and more) today in order to catch them. Fades is a sort of Horror Goonies from the creator of Dr. Who, and freaky but interesting. Some rare films as well as Sherlock second series (‘Scandal in Belgravia’ is probably the best Sherlock on screen I have seen, with her as a female dominatrix to Royalty and Sherlock with Watson as the modern misunderstood not-quite gay couple), Garrow's Law 3, Misfits, Sons of Anarchy Season 1 (when it shadowed Hamlet the closest), Silent Army and more. Check them all out here (along with daily updates, priced low for buy now so they can be sent with speed).

Friday evening Linda kindly took me out to the ocean. It was one of those sunny days I had been missing and as you can see, the colors were vivid, the water and weather calm.

I love the coves of BC, full of the logs broken free from 180 odd years of lumber booms before being permanent homes on the shore.

Down on the beach, looking out at the spit, and behind it one of the now unmanned lighthouses. I don’t get to get on the beach often (like, not for several years) so I took a FEW pictures. I’ll do a proper description Wednesday, but wanted to let those not able to visit the sea to enjoy what I did (And what kept me asleep for 12 hours with exhaustion afterward).

I love the colours of the pebbles on the beach, the reds and greens that seem to fade when taken off the shore, as well as the deep, dark black stones which have an eye catching luster.

I love how as the wave is about to break it creates a magnifying glass of the stones, sea life, kelp, and sea floor behind and below. In California where the waves are larger, what often when through my mind was ‘oh cool…..WHAM’ as I entered the ‘tumble dry’ of Laguna, Venice or other beaches.

Along with logs, odd branches and plants end up washed up on the beach, like this one. The west coast beaches are a repository of everything from glass floats from Japanese fishing nets to sneakers from containers that fell off frieghters.

Friday, March 23, 2012

Loss/Risk ratios, external influences and Food Stamped

I went for a nap today looking forward to wheeling out in the March sunshine, but got up at 10:00 pm. It happens. That doesn’t stop the feeling of frustration. The only way to avoid that feeling is to not emotionally invest. I know that every time I open my heart to hope that the taste of sand in the mouth disappointment could be the outcome. Knowing the pain may happen, will likely happen in advance but in my head doesn’t stop me from looking out the window at the darkness and having the tear track drop my cheekbone which displays no emotion. Where then to lock that ache away and ask about Linda’s walk after work in the sunny eve?

I try to take the beat to lock all of the attempts to go out wheeling, how I struggled to try and get dressed Wednesday for going out, but ended up doing the water-bottle abdomen moan. It all lives in my mind in flashes and then I lock it down and ask how the walk was. It feels a bit like congratulating someone for getting a job or promotion you tried for, except I deeply love the person I am asking. I want them to have had a good time…..just wish it could have been a good time for both of us. And after a couple dozen of those experiences in a few days it gets harder to put my own baggage on the rack and focus only on her.

I miss sunshine. I miss the joy of it,these few days when I can enjoy it, when we both can without me risking overheating.

I think everyone knows this, like the experience of trying a new recipe and have it turn out horrid and unsalvageable. And moments from realizing that being asked, ‘So what’s to eat?’ doesn’t stop you loving the person who asked. The romantic weekend turned bad; the life on a budget big splurge night out which turns a disaster; the medical crud which rears its head when you most want to focus on everyone else; the wrong change back which frustrates more than $1.26 ever should; having your favorite TV show cancelled, or the package you’ve been waiting for arriving damaged – Do we all know that feeling?

One solution is to have low expectations, to openly plan so much for failure that no one wants you on their bowling team. Having good friends, particularly a close friend who can cheer you up, and make you feel special when situations make you feel otherwise: that person who knows when to keep hugging until your smile turns to tears and holds on until the tears turns into that feeling of a blank slate, ready to start again.

In the documentary Food Stamped a couple decide to take the ‘food stamp’ challenge and live on what is given to those on food stamps (quick aside: check to see if you qualify as billions of dollars of Federal Money already allocated is unclaimed, and today it comes as a swipe card you use at the store). Somehow this couple, a tall joking guy and a very serious, list-making, highly organized girl have managed to go through uni, get together, get the documentary ready and yet still not know how much milk or cheese costs much less know when coupons come out, or that different stores have sales.

The girl, Leah, makes a list of every meal because for the two of them they have $50 for food for the week. The footage of them at the store is unintentionally funny because they do almost all their shopping at Whole Foods. Leah’s job is to teach those ON Food Stamps how to eat healthy and balanced diets. She teaches the kids in schools in low income districts and ‘educates’ the parents on how to eat ‘correctly’. It is clear that she has a very fixed idea of how people ‘should’ eat, while her partner, Michael, is easy-going and ends up getting a lot of glares from Leah. For example, one morning he says, ‘how about eggs for breakfast?’

Leah: “You had eggs the last two days!” (with the ‘how could you ask this question?’ overtone)

Michael: “Okay, but…I like eggs.”

He gets ‘the look’

So, watching Leah, in late 20’s, going from her job ‘educating’ a group of 30+ year old parents to the store where she and Michael are shocked, astounded that ground beef is sold for about $2 a pound. First because the weekly restaurant brunch they had for the two of them cost more than they had to spend for the week, but second because the ground beef they get at Whole Foods STARTS at $10 a pound, but is usually $19.95 a lb. Then it turns out that they can’t have any fruit because apples, which are cheap, are on Leah’s ‘Dirty Top 10’ of foods most likely to have pesticides. I end up laughing as she deliberates between a kilo of cheddar cheese OR a couple ounces of ‘organic free-range’ cheese.

What comes through loud and clear as they interview those who run food banks, or food-aid programs is that those with ‘life experience’ have no connection to the programs. Which means that like disability programs, the people who need the help have to meet the values of those who have never experienced living on food stamps much less being hungry. In California the head of the centralized supplier of hundreds of food aid charities refers to those on food stamps in a openly demeaning tone, talking about the ‘food stamp cycle’ of how, getting one payment a month, towards the end of the month often food runs out and the charities have a higher demand. This is referred to as an example of how those on food stamps are unable to budget or be responsible. He displays to Leah the ‘pyramid of sins’ for food donation. Michael wants to know why Rosemary Vinegar is there.

‘Alcohol content’ he is told.

Michael is totally baffled. “So…uh, you think someone is going to drink a bottle of this in desperation?”

The head of the food agency holds up the liter bottle and says, “You drink 25 bottles of this and that would be quite a buzz!!” giving Michael a ‘look’ Products for children with sugar, brand name like Jello pudding packs are all on the ‘sin’ list.

Linda and I have received ‘food supplements’ when we lived in The Tower, and it changed how I gave forever. If there is a two for one coupon on good cereal, or soup, or pasta, or good pasta sauce then cut it out, and have one for us and one for the food bank. With month after month without a name brand of any kind, with no name lima beans, canned squash, canned pumpkin, and no name ‘beans’ made me realize that in the same way countries can be evaluated by how they provide to the poorest and most vulnerable, so can we.

I wrote an article after talking to homeless individuals as well as the local shelters and asked what the greatest need was. The answer was toiletries: tampons, pads, deoderant, toothpaste, new toothbrushes, nice soap, shampoo and conditioner in sizes that are easily carried, and can be used in various locations. So I wrote the article and set up a donation for the largest shelter in town with drop in locations.

There was an immediate ban called. How dare I imply that homeless are dirty, smelly and unwashed? It puzzled me how while dozens donated, hundreds to thousands banned because they didn’t want to accept that someone on the streets or near street living is human. Humans need to wash, need dental health care, need to deal with having a period.

When someone asks how we are doing, I say that Linda is doing an amazing job working 12 hours a day and somehow covering 92% of our budget. And she really does this job, which she never asked for, without grumbling. If she had a complaint, she is frustrated she doesn't do it better. But right now, there is no way to succeed alone. If not for the help and kindness of over a dozen people, I would still have the same toothbrush from three years ago. My hair, due to having an autoimmune disease, needs a particular shampoo, my skin needs moisturizers because I don’t produce sweat or oils to keep the skin healthy. Everything from digesting the food and extracting nutrients to cleaning the straws so the black bacteria which builds up in the mouthpiece to the Brita filters (as I drink almost 4 liters of water a day) are all ‘not in budget.’ Thank you. For helping me get vitamin D, for not drinking water that tastes like I licked the side of a railroad stock car, for having fruits and vegetables, for toilet paper which doesn’t cause bleeding: Thank you!

Meanwhile, in Food Stamped, Michael and Leah were starting to snap at each other. They had discovered ‘free samples’ but only that week during interviews realized that those on food stamps often don’t have cars. And like our move to the UK with a year of Linda and I biking down to Tesco’s and walking the food back: supermarkets and bulk markets are often located miles away. Because the US subsidizes the same crops they did in the depression (corn, peanuts, beets and wheat), while food prices have gone UP almost 20%, junk food prices have gone down almost 10%), sugars like corn syrup, fructose and items like chips, fries, and Twinkies are all subsidized. It is also why McDonald’s IS the one place you can eat out for only a few dollars.

Leah had not bought any of those as they were not ‘whole foods’. Michael had realized that they had not bought any desserts. If Michael was hungry, Leah took it as a criticism of her ‘perfect’ chart, drawn from years of teaching OTHERS about how to live they way they now were trying to. The happy couple of the intro disappeared into arguments about someone (Michael) eating a carrot as a snack, or Leah frustrated because in taking back veg while cooking, hoping to save some food for the fridge, the dinner was ruined…but there was nothing else.

That feeling and situation of having no choice, whether it is the pre-judgmental doctor or just having no extra, be it food to pain control is one is familiar to anyone with a disability or illness as well as those who live at or below the poverty line (those two groups combined are 1 in 3 in North America). From those in Congress who took the ‘food challenge’ to live on food stamps for a week, all reported hunger, fatigue, harder to concentrate, harder to do high level mental tasks.

While hunger, nationally and communally, might be a political condition, the repercussions are felt personally and in relationships. I can attest from years on student budgets: tight budgets make more arguments and it can make small things into big ones, and a situation which was just ‘what was’ into feeling like letting not just me but ‘us’ down. In all areas, community can make a huge difference.

For me, the failure of Respite, despite it taking a day and a half for the hotel to lower the temp in the room and other problems which just added up to a learning curve make me feel personally responsible. I am sorry, to each person who helped, donated, helped pack or participate in failing to have a time that gave me but equally importantly Linda, a true respite.

While it is hard not to let what occurred, and the daily ‘failures’ which are more oft the aspect of the disease, it is particularly difficult not to internalize it, to claim it is as my failure. And when a disease makes dozens of things out of my control every day, I ‘fail’ hundreds of times a week. Particularly when in a small apartment, with limited energy, the failures of yesterday are seen today, reminders are everywhere, making it difficult to distance myself and get a more balanced perspective. But either I keep trying, or I fail to try. The last one might insulate me from the emotions of loss, self-blame and pain but I would have intentionally steered into eternal doldrums, and decided that a safe ‘poor’/’livable outcome was better than fighting for anything more.

Right now, I might be very close to that stable, enjoyable life I have been fighting to obtain for two years, just as Linda, whose hundreds of applications might be one away from the job which is both satisfying but comes with sick days, vacation days, and the fiscal stability which would bring flexibility of solutions. But we won’t know unless we risk.

As for the duo from Food Stamped? They made it to the end of the week and had people over, something else which took extreme stress and planning on such a limited food budget, using ‘lifted’ samples for the cheese, and some dumpster diving, only to find everyone, including closest friends and a relative unable to grasp a) Why anyone would do this and b) what it means to live on food stamps. After several attempts, Leah and Michael’s week was laughed off as a sort of experimental art or radical protest: something likely not meant to be understood and thank goodness they had finished with THAT odd little rebellion.

Leah, who was pulling down some serious dollars ‘educating’ those on food stamps went to get their week assessed by a professional nutritionist working for the State of California. While Leah was worried about proving a person could avoid the label of overweight slacker and stigma that came with food stamps she missed the forest and tree for a branch: Hungry people are willing to sacrifice stereotypes for food (speaking of stereotypes, anglos, or WHITES, not minorities are far and away the number one users of food stamps). While higher, but still low on the number of veg per meal, there was almost no protein but most importantly, while she was almost 700 calories a day below her needs, her partner was losing a pound and a half of weight every two days. And if they had continued it for a month or longer, both would have been at serious health risk.

Will that translate into more of a balance when ‘teaching’ the families on the program? Hopefully. The documentary, was somewhat shallow, but did show what stress of living on food stamps creates. Among other topics lost, it avoided dealing with the increase of costs during winter, as well as the difficulty of fresh fruit and veg year round.

Watching the DVD did however have me reading the annual reports of Whole Foods, a grocery chain based on ‘organic’ and ‘free range’ or even more expensive, ‘grass fed, free range’. This trendy supermarket chain, in the US, Canada and UK weathered the 2008 downturn by eliminating upgrading stores for a year but continuing with all new 15 openings. A supermarket which is loved by the DOW, in an industry that is lucky to get a few pennies in gross profit per lb of meat, whole foods averages a NET profit of 12-15% AFTER all costs, including building and opening a dozen or more new stores each year. Put plainly, the organic and free-range food store chain isn’t passing the profits on to the farmers (though the stock dividends are back on), but have the type of profit, year after year which is unheard of in the food industry, indeed in almost any industry with competition. And as a consumer, you are better off spending a weekend comparison shopping (and charting) the most common items you would want to buy organic, or free range at the local supermarkets. Better to do that and donate the rest to a tax refund charity for those who are on food stamps than pay Whole Foods a massive mark-up simply because it has branded itself, like Body Shop did, as ‘better’.

Tuesday, March 20, 2012

Sometimes silence is better

I want to lead the ‘not quite normal’ life of going out, appreciating graffiti, making food choices off things called ‘menu’s.’ I am a person who still laughs at highly inappropriate sex jokes from Misfits and wants to figure out where to get a VPN to watch season three. I’m still the gal saving up for her tattoo and who wants the energy to shave my pubic hair into odd shapes (do you think a Celtic knot is possible?). I want to see the southern cross. I’d love to go on a road trip.

But now, a part of me is this disease. And sometimes it creates relationship problems and survival living problems, with pain, nausea, and that’s not what I am going to spend my energy talking about. Except that respite ended with two days of vomiting and suffocating at the same time as my diaphragm failed. And I had two more days with fevers and hallucinations of the room filled with severed body parts of babies. People don’t know how much they can endure until they simply have to endure it. I am in and out of the stage where people die simply because they are too exhausted and have lost the will to go on. But those hours and the things I do aren’t ‘me’, but what I do or endure to allow the possibility of ‘me’ sometime, somehow in the future. And it seems for each trip out, or setback, there is more, longer and harder things to do and endure.

So for now, for this last week and a bit, like Thumpers father in Bambi, if I can’t say anything nice, better to say nothing at all.

Wednesday, March 14, 2012

Reason to get out of bed

First: Be a lesbian.

Yeah, I didn’t want to tell you because I thought it would be cruel and unkind, but yes, each and every thing in life is better if you are a lesbian. And I think probably if you are a bisexual too. Even chocolate tastes better. Colours are brighter. The smell of apple cinnamon fresh from the oven is near orgasmic. And we get a larger selection of clothes to buy, so shopping is 72% more fun.

Sorry, I took the pledge when I joined but I just thought that today it was time to let you know what we, in the giant lesbian conspiracy all know (yeah, the fundy Christians are right and we not only CAN communicate telepathically as part of the lesbian hive but we recruit, because like all those drug warning ads, one hit of lesbian lip lock and you can be addicted for life).

Second: As a camera whore, there is always at least one kick ass picture somewhere in your future.
A few days ago I got to see the wingspan of a blue heron from a couple feet away. Linda got the picture. She was thinking of kicking the bird, because she had lots of ‘I am a heron standing here’ pictures. But children were watching. She was thinking of doing it anyway. That’s what camera whores do. We aren’t proud of it, but that next shot, it is like masturbation, the more you try NOT to think about how great it would be, the worst the need for it gets. So, go forth and take pictures….once you are done and recovered from ‘the amazing disappearing finger trick’, ‘erase the problem’ (rub till it comes off!), or ‘just reading mom!!’

I am going to respite today and for everyone that helped that happen; thank you so much. I'm off, well, almost.
I am in that part of travel where I am terrified and freaking out (and wondering how to fit my entire apartment into a suitcase). I don’t do well with the whole anticipation of changing environments. I know ‘it’s going to be great!’, which is what I was told in line on every roller coaster ride. I know I’m going to love it there. And Linda is going to probably stay up too late doing sudoku’s, and I am going to use the pool, because it has an accessible lift down (rocking hotel), if I can find my suit. Cause I think they frown on skinny dipping at this hotel.

I would say I am scared shitless except I ALMOST missed a medical appointment because my nerves woke me with a ‘hey let me introduce you to your good friend, Thomas Crapper’.

I have a camera, and I am going on an adventure. That’s good, that’s going to be good. Let’s find out what I can do. I might even order room service – I haven’t done that in about 15 years. I’m going to use Indy to chase seagulls, and then go drink Sangria.

Have a kicking day, okay. Because somewhere, out there, is the smell of fresh baked bread. You know you love that smell as much as I do (okay, I enjoy it maybe 32% more because I’m a lesbian: sorry), so go and find it. When you taste the melted butter on the still warm fresh bread that's no metaphor, but getting up to find it kinda is: No risk, no reward.

When did I forget about that? There is no point fighting to live if there isn’t a smile about the life that’s been stolen, pawned, borrowed, and nicked. I’m off to find an adventure, start a revolution, participate in something memorable or at least keep trying for something which gives a smile, I hope you’ll join me, on this and on every 15th of the month. Life may bury me under four tonnes of lemons, but at least I smell citris delish!

There was a full moon last night I think: I’m going to look for it.

Sunday, March 11, 2012

Blue Heron, Peacock and Sakura blossoms 2012

Friday was the ‘lost’ day, and Saturday I had so many seizures I lost arm, hand, trunk, neck, and head usage. The worker had to feed a spoon at a time, and chewing was hard going. I had recovered somewhat and determined that if there was sun, ‘even a little bit’ that we would head out to take pictures of Sakura, the opening cherry blossoms.

Saturday night we played a game where each person guesses for points the answer to questions from drawn cards like ‘What career other than the current one would they most desire’ (Linda’s surprise is still wanting to run a stationary shop….or be an independent manager with teaching….but still ordering stationary), ‘What is the favorite colour’, ‘Leader or Follower?’ and ‘When do they refill the gas/petrol tank: a) half full, b) quarter full, c) when it is close to E for EMPTY’: I said, “Linda would have the indicator BELOW empty, with the emergency light blinking and still say, “Don’t worry, I’m sure I can get to work and then for groceries.”

We went to drop Cheryl off for the Ferry, and I asked Linda to stop here and there to take pictures of the cherry trees. I suggested we go to Beacon Hill Park and see the Cherry tree there, and she said okay, but needed to stop first.

What for?

“Some more gas, and before you ask, YES, it is BELOW the E and the light has been blinking a while.”

As a ‘fill it once it gets to half’ person, I’ve learned that many things can be changed, but some things can’t. I remember when I was first serious about Linda I really wanted to see her room. When she showed me I sighed and said, “Oh good, you’re messy too!”

She did not look complimented.

“Ah, but if we were to move in together,” I told her, “having one neat nut and one um..not so neat would be trouble.” She nodded her head at this logic, “Besides,” I added, “living with someone like my mother would be hell.”

“True!” Linda had already been over to our ‘perfect’ house which I had to vacuumed, with all the furniture moved, once a week, not a book or post-it note in sight, everything in its place and even a display of magazines (‘for guests to read NOT you’). My mother immediately apologized several times for ‘the place being a total mess.’ And did so every time anyone came to visit.

We wouldn't mind cleaning up some more; but we are not at each other over not using a coaster.

At Beacon Hill park we wheeled down to where I had seen the eagle. I spotted some squirrels, so I think the eagle was away (so doth the prey play). But a Blue Heron had landed by the lower bridge, and it let Linda and I come very, very close before it finally decided to take off, legs trailing, then banked left and flew away.


We wheeled down, toward the parking lot, where I had seen a male peacock jump and climb up into a tree in order to display his plumage all the better (spring is coming after all). We wheeled on, past a theatre or troupe taking photos in costumes, with the old style tripod stilt cameras to the large cedar tree at the corner. It was free of children climbing over it, so I suggested that Linda do so, and I would take her picture (wheeling over roots is no joke).

From there it was home to watch more of the BBC Earth Documentary series on the Arctic and Antarctic. Sunshine, Herons, cherry blossoms plus a peacock and Linda both preening up in a tree; not a bad afternoon.

Friday, March 09, 2012

Finding respite from the storms

It’s Linda here. Beth has given me permission to write a blog asking for your help. If you’ve been reading lately you’ll know that it has been a chaotic few weeks – family, care giving and VIHA just a few of the major issues being faced. It can all be quite soul destroying. The problem with problems is that there is no requirement for them to space themselves out. My Doctor today said that I have 'burnout' (most likely from work as well as spending 20 hours a week or more on applications, shortlist tasks and interviews). Beth has also been depressed for some time, and suffering 'Burnout' as well as pain that literally stops her breathing, or shakes her heart. We both need a breath.

Beth hasn’t had a vacation since last spring when we went to Sakuracon, nearly a year ago, and was ill in bed for 2 out of 4 days of that. She has had one weekend at Cheryl’s house about 5 months ago so we could see the salmon jumping. That’s it for a whole year. For the other 300+ days she has been stuck in our apartment where phones ring, emotional bombs are dropped through the mail slot and the clutter of life surrounds her. The past several weeks, she has tried to remain strong while daily threatened by loss of medical assistance from several agencies and individuals, as well as the stress of lawsuits, threats and emotional 'bombs' almost on a daily basis. Yet, she continues to do all she can to stay alive, and carry as much of the daily caregiving duties as possible so that I can apply, apply, apply, see my doctor and sometimes just be found staring into space.

We, Cheryl and I, would like Beth to have a respite for a few days, which will also give me a respite. Victoria is hosting a 'home town deals' for part of this week and next week. I have tentatively reserved Beth a room for 3 nights (Wednesday, Thursday and Friday) and will arrange for home care to come visit at the hotel to make sure she has what she needs. The hotel has a fridge, and individual climate control. Beth had been scheduled for a respite in Oct 2011, but they refused to allow climate control of her room, or privacy, and saw it as a good time to order a series of tests on her. Elizabeth didn't see day after day of tests in the hospital while going into heat stroke as a 'rest' or 'respite'. Plus, we were to be charged about $40 a day and they would only book for a week, which we could not afford. It was a case of either having tires on the van or her going on respite. She cancelled the respite.

We are still on a budget that Beth says 'covers 92% of our costs.' There is a strong hope that I will find a new job soon, but that hasn't happened in the last 8 months. If you would like to contribute towards the cost, please click on the ‘donate’ button on my
blog. It’s 3:30am and I don’t have the brain power to explain more or figure out a more direct way tonight.

Monday, March 05, 2012

‘Hacking’ Disability Style

‘Hacking’ isn’t breaking into computers, or NASA databases, but is a way of viewing the world as a series of systems, ones in which holes and loopholes, backdoors and overlaps are viewed and exploited.

I have lived by the ‘hack’, buying cases of soda and chocolate bars which I brought to my first summer camp, and sold at a 12% markup. Because I wasn’t selling soda for a $1, but 35 cents, the counselors couldn’t say I was ‘exploiting’ other campers. I said I was providing a service, and the senior counselor said they couldn’t see how I was making a profit at all. But I was making just enough so that I could have soda and a chocolate bar and end up with the same amount of capital as when I started. If I had tried for more profit, I would have been shut down. I was a ‘good girl’, and though they couldn’t figure it out, they let it continue. That was my first hack.

By the time I was in Grad School, I was clearing six figures annually on DVD’s, all with the motto of “7% net minimum.” It wasn’t a fortune, but it was enough to pay for grad school, some bills, trips and have any DVD’s I wanted for free. I played Amazon and ebay off of each other, riding the wave of what was hot, what was out of print, and what was wanted.

Helping people find what they want, and being there to help them is a form of ‘hack’ as well. We are a product of our likes and dislikes, our society and the influences of friends and family. Each person, each city, each country, each society has a ‘hack.’ Gandhi created a mirror for Britian, realizing that the ‘Englishman’ firmly believed they were doing good, and if they saw themselves doing the opposite, they would have to stop. His actions inciting the British to see themselves as lawless thugs ‘hacked’ the British Empire and freed India. The same actions were crushed by China, who saw themselves differently, as did France in Algiers.

The greatest hack is that of the mind. My actions in doing boxing, volleyball, badminton, tennis, 10K’s, and travel in countries deemed ‘inaccessible’ or ‘disability impossible’ were not for the public but for those who I saw and talked to with different disabilities who had decided what was and was not possible. I wanted to ‘hack’ the premise that ‘I can’t do ……’, the decisions about outcomes made before even trying. I was trying to ‘hack’ the disability community, and remind them that they had choices, ones they should not let others take from them, or give away themselves.

When it comes to the general public, I think so much I can’t sleep and yet, I can’t come up with a way in. I’ve tried to convince all people that wheelchairs are simply mobility devices, and yet neither the able bodied nor the disability community believe it in their heart. For both, the wheelchair is a signifier of far more than a way to get to from point A to point B and for the majority of users, a choice. Nor can I seem to convince those who fantasize or turn the wheelchair and users into objects of fetish that they can use it, as can any person at Disneyland, most large malls, or for $250 for an A4 from most medical equipment stores. It isn’t a sign of the ultimately dependant female, the maiden in distress, the ‘safe’ male, or a person more anything than the general public. It is simply a rather inefficient and often awkward way to get from point A to point B; but for those who use them, still the best alternative.

And as to the general public, who in the Amazon #1, and bestseller graphic novel Batman: The Black Mirror; as with so much mass media, the mirror shows that nothing is more terrifying to people than amputation, being a paraplegic or a quad. A neuromuscular degenerative disease is seen as only unending horror, not an education, and those with dementia portrayed as already dead, which is why we have not talked, not shaped, not seen or understood the neuro-diverse viewpoint dementia brings.

There are those who try to show that by working harder than others, we are just like them, without realizing the paradox enacted. To do something dramatic, only reaffirms to those able bodied that they could do that as well, but that it is amazing that ONE disabled person did it. The systems set up treat us like school children, where deciding what is best for us is not a loss of ‘equal rights’ but being a good person. If you don’t believe me, try the ‘escalator trick’ (riding up an escalator by flipping your casters onto the step ahead and holding on to the sides) and watch people freak. Listen as guards or staff tell you that you ‘can’t do’ what you obviously just did, and what no rules are posted forbidding. I did that to get up to the Science Fiction today as we shopped at Chapters, as they were having buy 4, pay for 3, sale.(I got a tattoo/fetish magazine, linda got wildlife photography).

Saying ‘I hope your children are/will be disabled’ is seen as an insult. Parents may say with a ‘knock on wood’ look in their eyes that ‘I wouldn’t MIND if my child was gay.’ But there are no, ‘Hope your son is gay’ cards along with the ‘Hey little Football player’ birthday cards for boys. But no parent will say, ‘I wouldn’t MIND if my child was/will be disabled.”

That is ALWAYS considered a tragedy. And ‘equal’ might be written on the books, but not in the minds, or hearts.

I don’t know how to ‘hack’ that. I don’t even know where to start, so culturally universal, so pervasive is the idea that nothing good comes from disability or illness except the determination to either try to be as others are or to not ‘give up’. But even for those who reach the levels they did before, it is the actions which are equal, not the person: they are always going to be damaged.

I might have a shorter life, but I am a better person because I got ill. I am, I think, a more mature individual, a more empathetic, more accepting, more aware of my own engrained biases and able to work to overcome them because I am disabled. Even in my sore mistreatment by various organizations or individuals, I have come to realize how fortunate I am.

I will continue to seek the ‘hack’, which alters the premise of people, or transforms the disability ghetto (with 80-90% unemployment in Canada) into a place where individuals’ value can be seen, recruited, and society changed.

I believe that a ‘100 list’ of the top corporations, to ask about hiring policies, accommodation in the workplace and an annual rating system, which has helped so much for both women in corporation management list and the annual gay and lesbian list. It brought awareness to corporations and for whatever reason, various corporations responded.

It isn’t the universal hack I want, but it is a place to start.

But so are the ways you see disability and yourself. How has it improved you? Or changed you? How would you hack either disability community or the global perception?

Thursday, March 01, 2012

Life, Death, Threats, Shopping and Tattoos

A few days ago I stopped breathing, my pulse was faint and weak, for thirty then forty minutes. Linda and I are struggling, so the relationship comes first. It comes before my brother threatening to sue me (for simply being his sibling), or my GP threatening to drop me, or my parents hiding that they moved to the USA last year, to Scottsdale, AZ or VIHA threat to take away community care. This is all just things which take up time, and then I sleep. Today, I wanted to go outside. Because while a load of people huffing and puffing over things which could be worked out if ego’s and a culture of ‘might is right’ isn't REAL, not as real as sunshine or a cold snowy day.

Outside is real. Pushing a chair and sweating is real. Seeing the flowers here and there, and the sun, trying to break through behind the cloud and failing is real. I got to the park and saw two baby dykes making out with serious lip lock (I waited until they had finished and turned away, just in case they aren’t out yet). It has been so long, years, since I have seen a gay/lesbian PDA in this repressed town. I am sure my mother’s chin drops as she readies her view of disapproval: created by a rapid and extreme lip and anus tightening. Alas mom, the world is beyond her control (she wrote to me to tell me that I should not view her the same when she was 30, as she is always changing; I turned to Linda and said, “Wasn’t I seven when she was 30? So…she doesn’t watch ‘As the world turns while ironing laundry anymore?’").

In the theme of 'coming out', leaves and buds are hidden, as this week it has been below zero and snowing. But these flowers are out, or at least out of the greenhouse, planted and ready to grow. Wheeling up the gravel path I kept warm by the stream of swearing as the trail leaned so badly one wheel often spun without touching ground.

Around the central area I heard an unusual bird call, high and long with two bleets after it, and thought if it continued I would make a movie to capture the sound. Then I saw the wingspan behind the trees, whipping around, and wheeled to where I could see the most when the bird appeared. It shot into the open, a young bald eagle, barely gliding before it disappeared into a tree-top nest. One woman I talked to pointed to the area and said that the eagle had made a nest there last year too. The squirrels were not out when the eagle calls: smart squirrels!

As I was wheeling back, I asked a man to take a picture, and as he took each picture, he got lower and lower, until I wondered why this man seemed to want a groin shot. In his excitement, he had the trembles and this is as good as it got. Interesting that my Emily the Strange top (thanks for the gift, see I treasure it still) with all her psychedelic power is in focus while things like my HEAD are not.

I wheeled back, up the monster hill, and buzzed Linda from outside, asking if she wanted to come with. She did and I wheeled a different route, through the oldest graveyard in Victoria, you can see the old tombstones in the back.There is something reassuring about a leaning bit of granite, a death obelisk, to keep me centered.

Wandering through downtown, checking out what was what. For me, seeing anything was a new experience. I hadn’t window shopped for almost four years. I questioned what a sauna or very short night robe with ‘wicking’ material was used for, when in the ‘outdoor and action’ store. Was it for ‘Hot Yoga?’ I was told it was for regular day wear.

“Really? Because first it is expensive due to the wicking material..”

“All the tops in this store have the top of the line North Face wicking.”

“Err…yes, but with this low cut and high leg, ‘the girls’ are going to be bouncing free and clear of the fabric.”

I was told, “You wear another wicking top underneath.”

“You buy a wicking sauna robe, then buy more wicking clothes to wear underneath?? And wear it outside?”

“YES!!” The sales clerk was not amused.

I was confused, but maybe someone wanted to spend $89 for a robe that barely covered panties and open enough to miss covering the breasts at all, and wanted wicking because they were going to wear it….rock climbing? I just smiled and put it back, and tried to dig myself out with the clerk, “Generally I just sweat, you know…then shower.”

From her squinty death ray look at me, I was quessing that I had dug myself deeper and the idea of sweating, or showing it, died along with the pet rocks, bulky car phones and pop rocks.

A little further down I wheeled into Emporia, a new store on Government street selling living and lifestyle products, from giant candle lanterns, soaps, to crackle and depression glass. It was a mother and daughter owned store and the daughter let me know it was ‘ladies night’ for downtown. 'Ladies Night' is first Thursday eve of the month had discounts and specials for women at 20 odd independent stores, plus more resturants, tapa bars, ice cream stores and more. She said it was busy early, then the women went drinking.

I told her that explained the number of women I saw coming out of trounce alley holding on to each other to stay upright and overhearing random bits:

"God, it is SO cold tonight."

"Tell me about it, I'm just wearing leggings and my crack and legs are freezing."

"Oh my God! Tell the world louder?!"

"Just saying, fresh waxing and freezing breezes don't mix. Where is the next place to drink?"

"Oh!" (they nearly stumble and fall into my lap)

After talking shop talk at Emporia I bought a candle of cedar, white birch and rosemary for the study, as the scent reminded me of the woods (I have burned a lot of white birch in my time). I got to draw an envelope and ended up with 25% off. Then we stopped by Chapters (selling 4 books or magazines for the price of 3) and got the last copy of Curve. My oh my, we have a lesbian household again (in our trip I even tried to convince Linda to buy a flannel shirt).

We headed back to meet up with the worker for the evening, stopping to pick up the 2006 anime film Redline at the library. I headed to nap, and while I slept Linda did something with frozen chicken breasts. I can only hope it wasn’t obscene.

I dreamt of conversations, including the one I had about tattoos I had with the bearded guy in the book store (as we lusted over a tattoo in one magazine showing 3-D gearwork of a clock decayed with exposed gears), to the polite group of skateboarders, who cleared a path for me.

Today, while wheeling, I greeted everyone with a smile and a ‘hey!’ and found everyone talked, sometimes weather, sometimes random questions or statements, all except for one man in a custom wheelchair like me, who wheeled on passing invisable me. That is a common experience. I do not know why this is oft the way, but I am not asking for them to recognize the brother/sisterhood of the wheelchair, just a greeting from the sidewalk on an almost sunny afternoon/eve. But he wheels on, face straight ahead. This happens so often I have wondered, as people talk online about how we are ambassadors or representatives of the disabled community, how does that combine with rehab which teaches a person to be completely independent?

When I read accounts from SCI's about how they did X or Y, 'with no assistance' is stated. And while emphasizing independance, there is a comment or two of distain for those who expect or desire help. I look in these stories to find if they talk about the number of friends made, or the people talked to. Nada. It is an independance which allows only observation, not interdependance. And then those who say, from the wheelchair, that they are not disabled. Okay. What use is convincing everyone that we don’t need help and are the same as able bodied individuals if we convince all that we are a bad neighbors, aloof and uncaring, at the same time? Why must WE be the worst examples of the failure of North America in giving value to extended family and community? Unless people are getting independant so they can have grandparents move in so they can care for them, along with a cousin or two? Nah, I haven't seen or read those stories either.

Oh well, I saw tats, I touched granite tombs, I held conversations, I almost had two girls fall into my lap, I have curve and a candle for the next cold day/night. I'll work on solving community problems....tomorrow.