Friday, May 04, 2012

Linda unemployed, oxygen kaput, yikes!

Linda had been promised work; as this position she has was ending, and after dozens of applications, several short lists, long lists, she would make it to the final two even, but nothing came through.  Yesterday she was told that a) the funding for the job they wanted her to do didn't come through and b) the head of the organization decided she couldn't apply for the job for the summer and fall, but ONLY if there were no other applicants who were qualified.  So yesterday, we found out the job that barely and not quite makes the rent, food and medicine will be over in three weeks.

It really has been weeks of daily bad news.  She went to work today, pushing her body, because the power wheelchair was coming.  Only it wasn't.  Like the scooter before it, they are seeing if it can hold a charge and MAYBE it will be there tomorrow (or they will say it can't hold a charge and after three weeks we are back to square 1, or will say, 'there is something else we need to check' and we will wait until monday). 

I have wanted to write about other things but trying to make sure Linda is okay, and taking care of is rather exhausting, like 'I can only sit up and my fingers are purple' as I was yesterday (today the replacement power supply for the oxygen concentrator died).  I have found it and added it to the wish list, but will try to find out if there it can be returned as it has only been a few months of use. 

What is hard is the overwhelming sense of helplessness mixed with so much guilt.  I don't know why things have been so hard for the last two years, and I don't know why they are getting harder.  This is when I normally would be working three jobs or doing ebay selling full time or coming up with some solution.  But right now, trying to rest enough so that I slow down renal failure, or nurse along weak kidneys is all I can do.  I can do maybe 2 hours of activity every 2 days, and that is about it.  And what rings in my ears in my mind is 'why do you fight so hard when you know that your existance is making Linda's life so extremely hard'?   We have moved often and started from scratch before, but never with medical expenses, and one of us ill. 

It is so much easier to be the giver than the person who recieves.  I still wish to send out 50 postcards a week, and 10 gift boxes a week, and if I can do 15% of that weekly, I am doing well.  But giving is something that, yes, gives me peace, while being helpless, dependant and living in a situation where there is almost no hope.....that is not a place of peace.  I still try to find joy, like the pink and purple sunset I saw as I wheeled up and over the hill to return the library DVD's and books, as Linda can't go much farther than the elevator downstairs.   Coming home, the moon was bright and I asked Linda to come out and I wheeled her for several streets, looking at the carpet of fallen cherry blossoms, the large moon in the sky and what stars could be seen.  I used the wheelchair as a walker, and Linda hung on for the ride, as she is often very tired by the end of the day and in pain.  It was a good hour.

But not knowing how to pay the rent, the food, all of it hangs over me.  And I know, in my gut, that I have done something, or I am something which caused this.  I know it because of the family who moved away, and I am glad my parents are snowbirds, and found a good condo in Arizonia as well as up in Canada and that makes them happy, I think (I don't know, as they haven't chosen to email or talk to me, I found out about the condo by accident, doing one of those random google searches).    Why they have chosen a life without me, I don't know, as they never said, they just went.  I don't know why the relations between my brother's family and I, which sort of tensed up after some comments about going to hell (for staying together), but maybe it was me, alone, afraid and tired of holding in so many secrets for people who I couldn't find caring: not blood relatives.  Other people came in and then out of my life, and I don't know why either, perhaps a change of politics, or because I can't afford to travel, or because I am often very, very ill, though working hard on getting as fit as I can.  True friends remain but I feel the guilt that I am hurting them and making their life harder just by staying alive.  Though I have tried, or been tired enough to stop fighting a time or two, only to find that it is a painful, oh so painful way to die, and long in that pain.

So I tried to do book reviews or other things until, living with these walls, I realize that these walls can be taken away, and might be, and how terrifying that is.  I have no reason yet for why VIHA has withdrawn services, and I go out alone, unsupported because Linda asked for help, and in doing so, my manager felt that while I am tasked to have a worker walk to the park with me, to have them walk to the library with me, or help me go to the store, or to the Y, to watch me do sit up's and push ups - well, that isn't how they envisioned someone in my state of health, and thus, removed help.  So in asking for help, we have less help and things are harder.  And I feel guilty.  Even though I find that workers go out with other clients, even to do groceries, or they assist clients in stretching and such in the home, or the Y runs exercise programs for people AFTER they have had heart attacks, and those AFTER they have cancer, or while they have cancer, but I, listening to music and resting, doing sit ups on a mat, now have to have meeting and likely more restrictions.   I don't know what I can do, or be, to change into a person that helps Linda to have a job, or help having a family that is there, or an extended family that helps in taking Linda to the hospital for her X-rays......because people just...go. 

I got a comment about going to sakura-con, someone telling me 'Screw you, you furry fag, why do you join OUR anime conventions' - which I guess is a play off of Screw Bronze.  It is the kind of hate mail I end up getting every day or two, on one subject or another.   Worse are the ones which help me see that getting IVIG might give me a life where I could get a teaching job or another job. 

But, hanging on, I guess like a lot of people.  When they say that unemployment is so low in Victoria, or the recession is over, it just sucks.  I want things like 'dental for Linda' or 'blue cross insurance for a new power adapter', but right now, 'rent' trumps that.  I just wish there was a day or two where something Didn't go wrong.

Here is Lonely day, which is how it feels at times, and I am sure most have felt it; it doesn't make the good moments stop happening, but it is a fight inside, all the time.


Anonymous said...

I'm so sorry things are so difficult for the two of you right now. I am keeping my fingers crossed that things will improve for you both quickly.

D. Emerson Evans said...

Power supply for the oxygen concentrator is on the way. Even if you can get the other one replaced, I'm sure having a spare never hurts. Expected delivery is the 10th. Also Bioshock, because I saw it on the list. It's among the most literary games I've ever encountered, and is a phenomenal piece of immersive storytelling. I just wish there was more I could do to sort out some of the more immediate concerns.


Lene said...

I don't know why things are so hard, just that it's bloody unfair that they are.

I was thinking about you and how Victoria has failed you so spectacularly. You stayed there because of Linda's job. Now that she doesn't have one, might it be worth considering moving to e.g., Vancouver? More resources, hopefully less insanity... Of course, the act of moving would be incredibly hard and therefore maybe not feasible?

JaneB said...

It never stops, for you, and it's SO BLOODY UNFAIR. Life isn't fair, but this really seems excessive.

Thinking of you, praying for you, and thank you for writing - the moon on the cherry blossoms flowering in my imagination and made a still spot in my own bad day, because you are still managing to give by sharing your experience, you know, it doesn;t have to be THINGS.

much love to you both.

Baba Yaga said...

Oh, no. As if the two of you were not already under enough pressure, and more than enough.

Much of what you know in your gut is true by virtue of being hard-earned experience, and hard-earned caring. Still, some things you know in your gut are gifts of abuse and bullying, and untrue. I know this, as you'd know it for me, if positions were reversed.

What you are and have done have not caused this (all this!). Mostly, what other people are and have done, or have *not* done, have caused this. That and some authentic misfortune; but a great deal of it, our failings. Individual, collective, and political. The lack of or unreliability of a safety net (which I deduce from your posts) is a whole society's doing.

That doesn't much help the sick feeling in the stomach, I know. It doesn't pay the rent, or give you any leverage, either. Still, you have enough burdens. Guilt over being you (you who walked Linda down the street, with destroyed knees, you who write for us, you who give much and battle hard) is not a burden which should ever have been placed upon you.

People do just go, don't they? That's something about people, I fear. It's certainly not particular to you.

Have you ever noticed that people aid and abet sadists and psychopaths (the ones clever enough not merely to repulse, at least), or mildly dislike them - but the contempt people who are doing their best, and who are doing it with rare awareness, feel for themselves far outstrips any reaction to those people? The world doesn't bring ill or good to bear on people merely because of their deserts.

Yes, it's easier to give than to receive. Far!! Receiving is a kind of gift to the giver, though - as I learned far too late, and sometimes still, gracelessly, forget.

Devi said...

Baba Yaga put it far better than I could have.

You know, people who really harm others - murderers, child abusers and their like - don't go around thinking that they're making people's life worse by their very existance, so why should you who are kind?

Neil said...

Oh, Beth. You definitely don't deserve the hate mail and ill treatment you've received. What you've done, or wanted to do, is what every couple wants; love (be it marriage, partner, friendship), jobs, and the ability to make life better for yourselves and others. Yeah, you're a pair of real radicals, aren't you? :)

Is there any chance of social assistance? Would that be enough to pay the rent?

Surely SOMETHING has to go your way soon!

Lene: Vancouver may be even more expensive for housing that Victoria. They'd be better off moving - if they did move - to a smaller city where housing prices are slightler more manageable.

Yikes, indeed... Did either you or Linda get my private email a couple of days ago? I realize you're busy with Real Life(TM), so I'm not overly concerned with an answer.

Love and zen hugs,

Kita said...

Dear Beth and Linda - I am so sorry that things have been so terrible for you both. I really dont know what to say, but I am praying for you both (not that that does much good!) and keeping you both in my thoughts always.

As for that poor excuse for a human that left that message for you - to hell with them! They are not worth your time or energy. Karma is a bitch and it will bite them on the ass. And if God is willing, He will let you watch.

lots of love..

Elizabeth McClung said...

Anon: thanks, I keep opening fortune cookies in hopes of one saying, 'today is the day it changes!'

D. Emerson Evans - thank you so much. We hope to repair the original manufacturer's as it is $400+ to buy, and still trying to find the invoice for this one. You think like me that with oxygen, a backup is best. I had read a review from a female bioscientist and she recommended Mass Effect as playing a female with moral decisions, and also Bioshock - if you consider it to be one of the most literary games, I am definately looking forward to it now.

Lene: Yes, I just don't get it. I have thought about that - if we need to move to Linda's home town perhaps and get a mobile home, but I think Linda's skills are so much that she could not find a job to match - but I think applying for jobs in Vancouver and if she is accepted, then go there - with the new accessibility law in effect in Ontario, it seems Toronto is the wheelchair and disability mecca of Canada, so thought to move there as well. The advantage of Vancouver would be that is where the neurologist who prescribed IVIG for me is, so all she needs to do is confirm it and I could start getting it right away - others who have had it went from being on oxygen and full time in bed to going back to teaching with my disease. But yes, moving would be so expensive.

Elizabeth McClung said...

Jane B: After so much stress and 'getting by', yes, I have been praying this week, mostly, 'Whatever it is, I'm sorry, you let Job off the hook, please don't hurt Linda simply for loving me." I will keep writing, and keep trying, Linda found 3 job possibilities on the 'swap and shop' including a University Job.

Baba Yaga: Thanks for writing that. What hurts and still surprises me is how people, individuals, have decided on their own, to restrict and limit my life, to take things away, not because of medical expertise, or because of training but due to 'personal feeling': an off duty employee who doesn't want to hear me FEELS he should contact the athletic head of the Y who doesn't FEEL he should hear me, or the duty manager, but puts a ban on my account until an official meeting, based on how he FEELS; as does a VIHA manager, who FEELS that going to the park is appropriate but going to the pharmacy is not, library is very much not and the Y is not at all - sigh.

I still love my brother, why shouldn't I look up to my older brother, or to my parents, and the friends online and real life who 'stepped back', 'took a break' or simply went from being the rock in my life to refusing to answer by email or text.

Devi: While I try to justify my existence and do in logic or social connection (that many diverse views give true wisdom): in the day to day, seeing the cost emotionally, financially and more, it is hard to justify it in my heart. But thanks.

Kate J said...

Simply can't understand that going to the park warrants help but the library doesn't. Crazy, that. Either you can get where you need to go without help, or you need help to get there. If you get a certain amount of paid help a week then I reckon you should be able to choose how it's used. Some 'disabled' people in UK can get 'direct payments' rather than carers, then they get to employ their own carers - I've kn own a couple of people do that, and a couple of other people who've been employed in such a scheme and it works pretty well. I don't know what the qualifying criteria are for it, though. And I guess it doesn't work like that in Canada either. Ho hum.

Mind you things are not always good here, and are getting worse - one friend of mine has now been told she is not disabled enough to get benefits or a 'motability' car so now she'll be stuck at home but expected to look for work... how, I wonder?

Another friend who works in Remploy (factories employing disabled people, originally set up for ex-servicemen after the war) tells me they are all now fighting for their jobs as the government - having structured the business so it's bound to be unprofitable - is closing it down because it's (guess what?) unprofitable! He says he and most of his co-workers will have no chance at all of finding work in 'mainstream' employment.

I guess that bveing disabled sucks, wherever you are in the world, though I must say Victoria does sound like a particularly bad place to be.

Hope the amazon g.v. arrived with you ok...
Love & peace

Lorna, Bob and Liam said...

Going through a rough patch myself, not compared to yours, but it just limits my ability to say much.

Hopefully this is enough: love you and support you.

wendryn said...

I'm so sorry to hear this. The hits just keep coming. :( Are thee any prospects for a new job? I suppose job hunting with a broken leg would be hard, too, though.

I hope you both get a good thing coming your way soon.