No food, low on medicine, high on shame and pain, but by caring, we fly, we fight.

This is for those who know what living past the edge is. I will always fight, for me, and for you. Do not give up, do not give in: when they say it is impossible, then drag yourself. And crawl when you can, because to anyone who has had the expectations of failure and defeat piled on you, and kept trying, then you are flying. For each and every person who has experienced the pain of being treated like your illness, your disability is your fault, whether that is through accessibility denial, doctor abuse, relative or friends turning away, and you go on anyway, trying even while it stings inside, then you are flying. We will always be afraid, because true courage is not knowing the outcome and trying anyway, particularly risking for a better life: for you, for those you love, for laughter in your life, for just a smile.

Please watch this AMV of Nausicaa: valley of the wind, a Miyazaki and Ghibli Films anime more than 25 years ahead of social awareness, and so,one of the last films of Miyazaki accessible in translation/subtitles (what was released in the US earlier was a heavily edited, cut and ‘kiddie’ version while Poland banned it entirely). Nausciaa lives in a post-ecological disaster world where insects, and toxic forests are dominant and deadly to humans, having grown very large. In the small cracks Humans go on, but Nausciaa’s small valley is threatened with two groups of humans hungry for power, using technology and the abduction of the child of the insects in order to destroy the forest and 'reclaim' power. Having grown up wandering the toxic forest she knows what other those individuals behind walls have forgotten, that the reason the only unpolluted water is in wells is because the forest is cleaning the water, and the planet. She will never stop fighting to stop the exploitation, fear and misunderstanding of this one stereotyped part of the larger connection to a renewed world (kind of like us isn'tit: those with visable and invisible illnesses and disabilities and those with them that we love). Nausciaa puts herself on the line to calm a hurt insect child (red to blue) and try to communicate to the insect and human adults to please, not let anger or others' drives get in the way of the sacredness of life and the most important of things worth fighting for: caring.


My computer is down, and has been last several days for all but 8 hours (so I blogged). Only part of a complex saga in which each few days we have less. A week ago we had $4 for food, and so, with Canadian Thanksgiving coming up, we won’t have one, or the food for one. As different pills run out each few days, without the money to refill them, including even the inexpensive ‘pill’ used for my hormone deficiency, I simply get sicker. We are paying for our computer to be fixed with rice crispy squares and gifts – I am not kidding. We have tried to get emergency money but the promise of help has not come (my parents were/are unreachable on a cruise still). People have been kind, understanding though it must hurt Linda to have to explain how she was made redundant, and basically beg. But she doesn’t give up, and I don’t either. I don’t ‘tweet’, I don’t ‘twitter’, and I don’t really do facebook. Please pass the word if you can that I am here, and I am posting on living, on gender issues, on disability issues, on feminist issues.

I write blog posts because at any time, a seizure can wipe my brain, or like yesterday when an explosion of blood came out of my anus, bright red, with cramps, and feces, it takes the time and strength I have. I fight to be up, and upright. No, no idea why, it isn’t like I have a doctor, or any medical that care. I haven’t been touched with care, talked to be a person who realizes that my medication is only taking away 40-60% of my pain, or that dying is a messy, and painful time, one of soul stripping. I have not had concern in a conversation or the simple touch on the arm, the hand to hold that can mean so much, not for weeks, or months.

But I fight, because this is the one life I have (and incidentally, the one life YOU have). And I will blog more and more often, my flag, and banner of resistance. Though commenting on blogger/google is a pain in the ass (ow, ow, ow! After last night/this morning how about we say, 'a real vexation!' ha ha) I hope you do comment (I keep anon signed comments open even though I get hit with Anon spam 15 times a day). But more, I hope you can watch that video and realize that you do matter in the large and small scheme of it all. And that if you are alone, then join those of us who are also alone, but fight.

This morning, I had a heart attack, including the pain, for 30 minutes, as the electrical signals to the four chambers failed, two ran backward, pushing blood into a pool, others beat so fast they pushed no blood at all. I passed out every couple minutes. Medication helped a little. But when conscious I prepared and went out, got to my appointment on time, to wait and have a doctor tell me that “Well you don’t look late stage” and “You are far too young to be seriously ill”. I pointed out that the parts of my arm which were not purple or blue had one very white pale arm and one very red arm and hand - the visual evidence that no, I was not made with play-doh, so a hint of something WRONG.

This was my first appointment for a new GP in a city where waiting lists of people to have a doctor are in the four figures in over a year. He wanted to know my pain on the ’10 point scale?’ My muscles in my arms, face, shoulders, back, body screamed from lack of oxygen, my back screamed, it hurt to breathe, and I was on oxygen. I said, “If getting a needle in the roof of our mouth is a 3, then the pain I experience is generally a nine.”

“You realize that 10 is the top of the scale, so I doubt it is a nine, and not NOW.”

I asked, “So it doesn’t go higher once the pain has made you lose your sanity?”

Dr.: “No,it is just 10 points, so do you want to change your answer?” (meaning: change your answer)

I said: “Well, I guess when I ripped those muscles from the inside of my ribs while rock climbing would be a two, cause that would make when I scream and scream, having gone insane from the pain (after 18 to 24 hours without pain meds, or after a hard day) as a NINE (he raises an eyebrow at me of, 'really, a NINE?')" I amend, "I..I must mean an eight, then I guess right now I am about six?” He had looked over to Linda when I talked about screaming and she nodded, the usual, "I am pretty sure you are lying, so let me ask someone who doesn't have your illness" doctor thing (Never trust a patient, I guess doctors learn that from TV?)

I thought about the times I have had to be held down while I screamed myself hoarse, or when I dislocate my jaw in seizure, or ripped the muscles off of my spine but have to use them anyway, and reset my jaw with two hands. I thought about the care workers for palliative people who said the hadn’t seen anything like this, or those workers who quit after one or two shifts because they told management they wanted to wash dishes and make sandwiches, not see someone being literally tortured by the malfunction of their entire autonomic system. And not just that, as the pain signals are jammed up in the spine from the neuropathy which is as painful and nerve wise, the same, as radiation poisoning. I think of the people who have had to turn away from looking, to walk or run from the room including Linda, including someone who had been treated for cancer because ‘watching that…oh god, it made me want to throw up.’ But I have been chastened by the doctor and the scale….I am a six, not that bad, not seriously ill...at my age (can you tell I live in a town of seniors?).

I am also ashamed, having been forced to strip mine my mental 'worst of', and the memory of my pain and having to focus on my pain NOW makes me almost entirely unable to function: the meds do only block about 50%, later crying as I try to stimulate my body to keep going. The shame makes me feel naked in a way that can't be covered, so I cry myself to sleep. I am not the only one who had been made to feel that way, not the only one this week even. Hold my hand and know this, it is the openly 'conditional caring' that doctors offer which brings that shame and hurt (that if we are judged not worth, too mental, too young, too unbelievable, too unlikely, too late in the day to care, too female then the caring doctors have offered, and can improve our quality of life...is withdrawn).

I get through each day by focusing so hard on each task that I don’t have time to give in to how bad it hurts (Science article call this 'flooding with the senses, using one sense to block out others). At the doctors today, because I am not dead, not fitting a disease stereotype, and certainly, according to the doctors’ idea, not ever going to be in a 9 or 10 of pain (though I have screamed until I lost my voice….for three days), I got emotionally hurt. But I went, and I will go again, to this or another doctor because I want hope. And I want to live.

I will fight and I will fly. And I will always be afraid, but no, it won’t stop me from going on. Not for long.

Happy Canadian Thanksgiving from one child of disappointment (you know, the failure, the screw-up, the sibling that is pitied and never an equal) and black sheep of the family to all the others out there. You’re not alone, and don’t let them think you are.