Monday, April 30, 2012

Living day to day, and a del Toro film recommendation

After two weeks, I hoped that things would be better. Currently, Linda has yet to receive any form of transport – the scooter could not hold a charge, and had to be taken away, and while promised a powerchair from QA hospital, that fell through as well with Friday being the day Linda’s staples from her surgery came out, but still no mode of transport. Papers have been sent to Red Cross and they are trying to assemble a power chair to work. Linda’s cast is non-rigid, meaning she can’t put weight on it for the next month. It is day to day.

For me, due to trying to do any and all heavy lifting, by evening I frequently fall, pass out or crawl. For five days now the filters and my kidneys seem to have stopped functioning, leaving urine without colour, protein or waste. I am waiting to find out if this is renal failure, diabetes or something else. It happened last week, then function restored, but after exercising, happened again and stayed that way. I had hoped to ask all to plan a day of fun for the weekend of May 19th/20th as it is not just a birthday but another year survived. I did not expect to survive, and two weeks ago, when I had a high fever and organs shutting down, I thought more than 50% I would not survive more than a day or two. I hope that I will be here to plan some fun for Linda and I, like power wheelchair racing.

Thank you for those who have sent cards to Linda, she greatly appreciates them, and thanks for the socks from down under – the colour and fit are perfect. This last week, VIHA, after sending a letter saying they had never discontinued service, denied any home care. They were requested, after talking to the Ombudsperson office, to answer what was the complaint, who made it,, how to present the other side, who was at the ‘meeting’ where it was discussed and who made the final decision to deny care. In response to an appeal for help to our VIHA case manager, all doctor ordered assistance, known as ‘Task 2’ were removed from my care plan as well as the ability for workers to accompany me outside the house. Indeed, workers have been personally threatened with dismissal for simply helping me get to the library. This means I do all of the small tasks these two weeks alone, without the ability to have someone to carry anything, or to even call for help as needed. Right now, making my bed and washing my dishes along with laundry once a week is all workers are allowed to do.

Since there is no way to find other care, as VIHA stands for Victoria Island Health Authority, which operates all hospitals and anything medical – without any names, or anything even in writing, there is no way to use the VIHA complaint system, and the ombudsman office have fast tracked it.

On the same week, after doing my push-ups, and sit ups, including 11 full body push-ups on my fists, I finished with crunches with my legs over a ledge and me curling up in a sit up, pulling myself off the floor. With 100+ sit-ups and 200 push ups, I relaxed and listened to my music turned up full while the world slipped away: taking a break, slowing down the heart. A YMCA day manager who was working out took this as distress, I opened my eyes to find the first aider and him beside me – I gestured to then found the cold pack, asked for helping breaking it, but as I was lying on the ground and my diaphram just had a extreme work-out, it took too long to get the words out and I tried to pantomime. This failing, I did it myself and applied it to my core, to cool me down. The manager had introduced himself as ‘I’m not on duty, and I’m just working out, but I’m not on duty’, so I explained what my exercise program was to the first aider, a female, who was the on-duty manager. However, the male off duty manager kept interrupting or simply talking over me. He said that I could not remain at the Y that day, and must come back the next to work out.  If there was any fainting it would be result of anemia I have had since 15.  However, this was more like 'fading', like after doing an all out run, when you lie there trying to catch breath, the world distant and the lungs and heart close: to ban me for this state seemed extreme and I asked him to please show it to me in writing. That asking was not received well.  I don't understand why 'can I see that in writing' are the most hated words in Canada?

He left, and I made an arrangement with the on duty manager to use one machine for a few minutes then use the recumbent cycles, as with the arm rests and seated position with the legs held by foot bands, it was safer than a wheelchair. During the exercise, the male off duty manager appeared to tell me he had called, at 10 pm, the head of the YMCA, and that my account was now barred until I saw him. I asked to speak to this person he called but said that was impossible, and then talked over me to tell me that ‘this is how things are, I don’t care if you like it or not, it is simply how it is.’

For me, it rounded out a crappy week. I spent some time explaining that for an organization and individual who threw around the word ‘liability’ (I offered to sign a waiver), he didn’t seem to understand that the more he touched, moved me, and demanded I obey his commands, despite his first sentence being, ‘I am off duty and working out, not here as an employee of the Y’ he made himself personally liable, much like an off duty fire fighter running into a burning building, not allowing the crew there to work as he ordered people in the building to do this or that. By interrupting and blocking my communication to the on-duty manager and first aider, he made himself liable, except that when contacting the head, and blocking my account, now the Y and he have broken a contract. I called the next day, several times and another worker told me to not come to the Y as the head would not see me, nor would he return calls neither was I ‘allowed’ to come to the Y on Friday, except for a message that I was to appear as was Linda on the morning of Monday. Since Linda has no transport, and no way to go beyond a few feet with crutches, that is impossible.

It really hasn’t been a good week, and the end of a rather shitty year. After dozens, perhaps over 100 applications, Linda still has not a permanent job, but rather one where she is paid daily. And that work is coming to an end. When the government did a mass hire looking to train up managers and supervisors in another department, hiring over a dozen people in one go, she was not selected. Every time she gets shortlisted, she has ‘assignments’ to do in order to move from the long list to the short list, and then given larger ‘assignments’ taking about 15-20 hours before the interview. She keeps getting long listed, or short listed, only to be told at the end of the day that it went to someone in that department, or it had already been determined before she went in.

All my life, I have believed that if you are honest, caring, and polite, giving respect to others and taking personal responsibility, that these qualities would be valued. There is not one employer of Linda’s who hasn’t held her at the example of the department, the best of the best, yet for two years, we still have no security and Linda has to continue to work each day to make rent. VIHA and my manager, instead of improving the quality of life, or even keeping things as they were have in the last six months steadily made life more difficult for both of us. The Y, for the past several years has put inequal restrictions on me, that while I am a paid subscriber, I cannot do drop in courses or any course without the approval first of the male Athletic director. I have asked twice and been refused to join the fitness course for those post heart attacts, with bypasses, valves and other heart issues; I have been refused to be allowed to join those with cancer, or the programs for those recovering from cancer survival; I have asked for a training program to assist my condition, but that also has been refused. I am not allowed to use the steam room or sauna without another person present to ‘assist’ me, and in all things, including having to ask like Oliver Twist for ‘more please’ in order to take any course, and having three courses/drop in’s having instructors/staff so anti-wheelchair that I had to drop them, I have obeyed each restriction. Why does the Y demand medical information, then use it against me, instead of to assist me? Why, when they have doctor’s note after doctor’s note, do they always demand more, and allow less. Is this how all other paying users of the Y are treated? I believe not, and in this last case, I believe that when a male off duty supervisor orders me around, and then goes to the male athletic director and overall director, in order to ban me entirely for…..exercising at the only machines I am allowed, there is a corporate culture of discrimination, which is against the ethos of the Y in general, but then, maybe that is why the web page for Toronto asks and encourages any complaints or suggestions for accessibility issues and the web page for Victoria has no mention of accessibility at all.

I do not believe that, like an 8 year old, any adult, or any male in a position of power expects and believes they should be able to make it so a female with disabilities is required to petition to do what any other Y member can simply join by showing up; that is a culture of double discrimination.

Yes, I get a bit faint or need to rest sometimes when I push myself, just like lots of women with anemia and other similar conditions. Is a ban standard practice? Is it reasonable practice? The same could be asked of VIHA, an organization which, so far, we have only encountered female. Where right now a nurse is ordering a doctor to tell a specialist what to do (they want me to have a full psych eval, by order, but without any promise of care from VIHA resuming if I do – this was determined by a meeting where neither I nor Linda could contribute, and as I haven’t seen my case manager or the RN in almost a year, it is hard to know how they discuss anything, particularly as there is an instruction from me in the file of our GP not to pass ANY information on to VIHA workers without my consent – as medical confidentiality seems an idea they are used to abusing). It seems a world turned upside down when a RN can order a specialist doctor around. This is why my GP was so angry, when I said that I would ask my therapist to do the evaluation because a) I wasn’t doing as ordered in the way I was ordered and b) he demanded to have the notes from my counselor and therapist sent to him. He didn’t get that people go to counseling in order to have a bond of trust with ONE person, not sent to everyone. This province also happens to be one of the few places where notes of therapists can be demanded by lawsuits and other authorities…..which is why most therapists don’t take notes.

So that is the week. Fun for all. I will say, in ending, that Don't Be Afraid of the Dark is a film by the creator of Pan’s Labyrinth, Guillermo del Toro. The artwork is very similar, and Del Toro wanted to remake a TV film which scared him as a child. He is influenced strongly by the welsh author Arthur Machen, and Del Toro spent 15 preparing and getting this film ready. It is, like Cronos or Devil’s Backbone, a horror film with delightful images, and a more complex idea and world than a trailer might suggest. He has also put out an illustrated novel, Guillermo Del Toro: Don't Be Afraid of the Dark: Blackwood's Guide to Dangerous Fairies . Machen like many of the period believed in the idea of an older morality, and that one wishes up the fae or the otherworldly at your own peril, as to them what might be fun or mischief could involve killing you, or worse. Basically, that when dealing with the ancient and unknown, treat it like Pandora’s box: that some things should not be opened.

I go onward knowing only that life with this much uncertainty and prolonged difficulty is hard, but, though I might feel it is somehow all my fault. Because that is what I was taught, by my parents, my wacko religion and our society, but it isn’t. Sometimes bad things happen to decent people, and as frustrating as it is to hear, ‘I’m just following orders’ is the type of mentally in 83% of the population, the Milgrim experiments showed, even when that might involve someone’s death. That doesn’t make what people do right, nor does it absolve them of the choice they make, even when that choice is apathy or indifference, but we go on. I believe that there is an advocate out there, and that with a good job, a health care advocate, our quality of life can be greatly improved. But that doesn’t stop it from sucking right now.

I was able to send out a few postcards, the start of what I hope to be about 200-300. Day by Day, right? Having all my internal organs work would be a good start.

PS: In the 'it never seems to get better' spiral - a) Y too busy to even take much less return a call on the day we were told to come in for a meeting, b) Linda's chair which 'would be ready' last friday, but definately monday was told today, 'No wheelchair, we are putting you on a waiting list' - she was to return to work tomorrow, but has no way to move, plus we still have no way to run errands, even to return library books, c) After I lent funds including drain my emergency and travel savings account, ebay and Amazon problems drained $142 in six days;d) this incurred fees due to not having enough funds, e) lending Linda my walker, and falling down every day or so, or crawling or dragging myself, I was really looking forward to using my walker again - suck!.   It would be great to have some good news instead of 4 types of new bad news when getting up.
This is when someone is supposed to hum, 'don't worry be happy'


SharonMV said...

Dear Beth,
So sorry about the all the troubles with the Y and the "care worker" administration. I remember so many fights that you have already had to go through with both. I can't belive there is no wheelchair or scooter for Linda! Such uncaring incompentence. We had to rent a wheel chair when I had the ruptured Achilles tendon, as I wasn't supposed to put weight on it. Turned out that our insurance wouldn't pay for it as we didn't get it from the right place. At least we manged to afford it at the time. I hope she can get something arranged so she can go back to work (and you two can go out together). I know things are very hard for you now, with Linda injured. Please try to take care of yourself too. I love you & wish you truly a happy birthday. I hope we all can celebrate it, even if in small ways.

By the way, if that not on duty manager at the Y touched you, he should be sued!!
I sent you a card, it should be there soon.

Love, Sharon

JaneB said...

Awww, what a rotten week! Feeling guilty as I think I was involved (unintentionally!) in the eBay problems - not what you needed.

Elizabeth McClung said...

Jane: Yes, we crave 'routine' desperately, it is I think 17 or 18 days of total confusion and struggling where trying to figure out how to get a doctor's note becomes a HUGE deal - Linda is really good with moving around the apartment thankfully. The other stuff was like, 'Wha? What happened at my bank?', and just wanting something GOOD to happen. A package and a card is headed toward you - should arrive in 10 days or so.

SharonMV: Thanks. I am just tired of having the same hassles over and over again. They say at first they are trying to help, but now, words like 'help' or 'improving quality of life' just never come up. I know what it is like to have to deal with sudden financial stress - we borrowed to make the rent this month, as well as the van insurance and will likely have to try and rent a wheelchair somewhere now, starting from scratch. I'm sure you know the time and energy drain that comes with it, and everyone then is busy and things are just 'looming' if you know what I mean.

Neil said...

I'm sorry that I haven't been here very much lately; I've had migraines and an eye infection. The eye looked like a red LED light for a couple of days, but drugs ARE the answer sometimes, and I'm healthy again. Ecept for the headaches and nausea... SO I'm going to have my head examined this week. I'll let you know on Thursday how the God complex works for Saskatchewan neurologists. :)

It just never stops for you two, does it? No matter what you do to make your life better, someone stomps on you. I suppose it's because you're in such an exclusive club: lesbian, disabled, MARRIED, and terminally ill. But surely SOMETHING has to go right for you!

Love and zen hugs,

Baba Yaga said...

Oh, good grief. It never ceases, does it? And of course, logic never permeates the shell of righteous refusal. (I've never understood the righteousness thereof. The only good thing, and that hardly wonderful, is that the overt sort is so much easier to understand than refusal acted while someone's saying "I can help you". Curious that it begins by being all about help - and what nice people we are to help -, and ends by being all about obstacles.)

No, not your fault. The rain falls on the just and unjust alike, but the unjust has stolen the just's umbrella. (I rather think I must have stolen that from somewhere.) The delusion that merit and fortune are related is comfortable for the fortunate.

Gracious. Nearly a year since the last birthday. Another year of defying impossibility, as only you can. You and Linda. One can only hope some good news comes in time for this year's birthday. Some form of mobility for Linda would be rather nice.

(Hmmm. Yes, I rather can see the two of you racing all out. Possibly with axe-blades attached to your wheels.)

Neil - wish you better health soon. And the god complex wielded only in your favour.

Lorna, Bob and Liam said...

Oh, Beth... so sorry you're going through all this. I can't even come up with anything hopeful or cheerful... it's just so wasteful, of your time, energy, life force, everything.

Like everyone else says... sorry it's been such a rotten week.

Hang in there, and sending hugs and hopes, as always...

Lorna, Bob and Liam

Lene said...

the crap they pull at the Y is simply unbelievable. And then I remember that it is in Victoria, the surreal parallel reality where nothing works the way it should. Mindboggling.

Sending hugs to you and Linda.

SharonMV said...

Dear Beth,
thinking of you both again today. we are going through a hard time too(again, too). Massive insurance bills from having to change insurance halfway through last year. this will happen again as we will be changing to dennis's work insurance when it comes through. So my huge deductable ($4000) will be paid twice in the course of one year. Poor Dennis has so much work & pressure dealing with all the work and financial worries. I've been too sick to help much, but I do manage not to go mad!

I hope things will let up for you & that you will get more rest & also time & strength to go out.

I'm looking forward to your birthday, so you must be here. If not an outing, then at least the planning of something special.

Hope Linda is doing well & getting some transport soon.

Love, Sharon

Kate J said...

As usual, life sucks. Wish I could do something to help you and/or Linda... if I were there I could push a wheelchair, bring some home-cooked food, make you a cup of tea, give those people at VIHA (?) and the Y and your doctors and Linda's bosses etc a piece of my mind in no uncertain terms, chain myself to the railings outside their office... but I'm not, I'm in Wales, so all I can do, I guess, is send positive vibes and virtual hugs to you and Linda.
You both amaze me, that you can keep going and post such interesting book and film reviews and onbservations of life beyond the tribulations of your everyday lives.
I'm going to pay a visit to your wishlist though, see if there's something I can get to help just a little.
Love & peace

Olivia said...

I wish all these supposedly-simple things weren't so hard for you because of others' stupidity or prejudice. Sigh. But, very glad to know the socks worked out.