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 myself....it 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.
43 minutes ago