There are many images within and from each of us; a person who has it all together, a person who feels inadequate, a lonely person, a frustrated one who also might be the life of the party. This is a disability blog, but it is also a human blog. I don’t think the two are exclusive, if anything one manages to highlight the other. So these are the parts of me I am going to talk about: the caregiver, the supporter, the actively suicidal person.
Here is a picture going out to a particular person and vet, but also to every person with animals or loves them, or who is lonely, or who just likes breasts! The thing is, for some people this time of year is all about family and being too busy to read a blog. And for some, like myself, though my family (biological) has probably made me cry at least two to three times a day for the past week; I will not be seeing or hearing from any of them. I did call earlier, but the calls are screened. So lets just say, not a joyful event right now. And you know what, I got showered yesterday but couldn’t get out of the house today or yesterday, I wither. Frustration. But I sit at my computer and I try to send positive messages to people. I try. But also today, and yesterday, I needed to be there for friends and more than friends, real family, the kind that matter (non-biological ones). Relationships hit bumps, and the more stress, the more bumps – and right now it seems to be a pressure cooker of stress. So it took 60% of yesterday and 90% of today being there, talking, working so we are all together, on the same side so that happiness can....and one day WILL bloom.
Also, the medications to help Linda’s illness turned out to produce some almost emergency side effects. She is getting them out of her system and I have been playing the role of Primary Caregiver. Which is a switch for me, and one that I will be paying for in pain now and tomorrow. But this is Linda, and I would do anything for Linda. Linda is sick, so Linda needs me. Nothing else matters.
Oh yes, the suicidal. Well, the problem is this, I have been passively suicidal for some time now. I have given many things away, I have finished projects, I have made sure the life insurance is up to date, I have given instructions on my cremation and burial and I have said, about five times a week, “I want to die.” Now that has gone up to about 10 times a day. So not exactly “But..but..there were no signs!” The thing is I have no hope: what I see before me is a harsh and painful death over a short period of time OR an elongated death which is even more painful and which now, housebound, I serve no purpose, I have no purpose, I have no hope. No hope. My Goal is Hawaii by May. I started to work toward that. Linda did not. She said, “Yeah Hawaii.” But we are in the usual medical vortex of issues ill people face: financial, time, medications, doctors, specialist, etc. Also, the concentrator that is supposed to be here.....where is it? And I am honestly tired, like bone tired, burnt out tired. I just want to lie down and be ill. I want the pain to stop. And yesterday, after Linda had a pout, I decided that this was as good a time as any and attempted to induce the stress or strain to stop my heart and lungs. Which also included removing my pain meds and letting them leave my body. I was only partially successful (some stopping breathing and pain of interesting magnitude; now back on pain meds, body still doesn't seem to know!).
Now, deep down, I WANT to live, the problem is I am spending 6+ hours a day fighting everything from financial issues to medical ones. I am tired. And these aren’t even issues that would help me live longer or improve my quality of life. This is just the regular rain of shit!
So what changed? I realized a few hours after waking up that Linda’s responses were off, not like Linda, but atypical, that indeed, she was sick, very sick and needed help. Linda needed me. And that even the pout was probably a reaction to the pain she was feeling, and not being able to treat. Once I found that out I worked for seven or eight hours to care for Linda, to find out the source of the problem (medication reaction) and to take care of her as best possible. Somewhere along there, a tiny sliver of reflected hope showed up. Sort of like sunlight reflecting off a wall as seen from a darkened jail cell. And maybe tomorrow I will be able to move into the type of hope that will change things; change viewpoints. For example I want to be part of the BC race series. I have to give them the money NOW (because Xmas week is the time people have lots of extra money!). So no $100, no racing wheelchair, no races. I honestly don’t know if I will be able to do a single race. But if I sign up, I am signing up for a future; a future where I am alive to do races, where I do them, whether it is a good idea or not! I want to do that; I want to sign up for hope; tomorrow will tell me if I can.
I have in many ways, lost my way. When I lie in the dark, in the pain, I do not know what to think of or remember, what to dream about in the future to help me make it another day. Many days, I feel already dead, that anything spent or given or even left for me to drink or eat is a waste because I am DEAD, the critical moment just hasn’t happened yet. I don’t think that is the type of thinking that is going to keep me going until the summer, do you? This is a HARD winter.
I guess for me and all those for whom this winter is not a pleasant one, I will not start singing about “tomorrow, tomorrow….” Or about sunshine and raindrops. I will say that life is sometimes like eating a bowl of ashes for breakfast. And you eat it EVERY day. Because one, you are too damn ornery to give in just because your life happens to be sad, pathetic or crapped on from a high place. And second, because I believe, even if I can’t remember it now, that there is something I want. Something I will fight for, will fight to live for. I am not a dog. I am not a possession. I am free, and I will live to die free.
People live in a world where there is very little belief. So I ask you to questions, “What would you be willing to die for?”
I promised to die if another could be saved; so who am I to question how this is fulfilled? I am dying, I know that through donation of organs and skin and eyes, at my death many will benefit, but I still believe that if I take this to the end, someone else does not. Silly I know, but I have my needs. When you are where I am, you can make up what gets you through those nights.
The second is harder, “What would you be willing to live for?” Not myself, and recently, the pain and hurt and working every waking moment, and the pain, did I mention that, is wearing me down. Is it enough to live for others? I have to find something to live for. Right now, that is to watch the fourth season of Bones on DVD with Linda. I watched the third season, and it was good. Of course, soup night is always when they find the maggot corpse, but it was good. I want the fourth season, and I hope they release it soon.
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