My Remembrance Day: Sickness, belief, and dreams

I came in the door and my home care worker was there already. “I’m Nu.” she said.

“Hi Nu, that’s Filipino? My name is Elizabeth.”

“No,” she said, “My name is XXXX but I’m new.”

Oh.

Less than two hours later she literally RAN for the door leaving me able to only move parts of my fingers but not talk. She had said several times, “I shouldn’t have been sent here!” Seems she wasn’t trained on seizures, oxygen, or even what told my needs were. All she had was a name and an address. I had asked her pre-seizures how she knew whether or not to turn up the heat without knowing if a person had MS or was heat intolerant? She said she looked in the book if she could find it.

It was one of those days. I had problems getting out of bed; I had pulled my shoulder and part of my spine, and couldn’t raise my hands above my head – definitely a low ponytail day (you know those hair choices made for you – like the other day when I spent 15 minutes putting in earrings because I, dammit, was the person, who was in charge, not the disability/diseases).

Tonight is the start of Remembrance Day. It is supposed to be for WWI, the War which would end all Wars (they seem unbelievable optimists from our jaded position). But since almost no one observing it knows what is to be remembered; I will remember for them. It was not death they mourned but death preventable, death from pride, death from vanity, death from the avarice of leaders. Death because those, both men and women in command would rather have 100,000 human beings charge across a field against machine guns than admit they didn’t KNOW what they are doing.

Of course it doesn’t end there. There are those killed because of stupidity, whether that happens to be from a home care agency in Victoria to the intolerance in each country which rack up a death toll in the dozens for T-individuals. Then we can add in for North America another couple dozen in the US for gay men, some more lesbians, bisexuals, the abuse against pagans, atheists, Muslims and other minorities. This is supposed to be the day we hold the mirror, no not to THEM (whether that is leaders, or the political group you oppose) but to ourselves.

Some wanted to know what I was 15 or so years ago, and I can say with certainty I was far sicker than I am now. This is what I looked like: If you saw with your heart. I was anorexic, full of self hatred and channeled hatred for all those who were not ‘the elect’; which was everyone from Catholics to Atheists, Gays to those who have tattoos. I was so full of righteousness it was killing me; and the chains were put there by me. I was holding, in my heart, what I been trained and believed with all my being were to be hated. And so I punished myself harder than anyone else could. I have always been true to my heart, my beliefs, and I have always been wrong, or ignorant or both.

I was lucky enough to know that I needed to be free, gone from the life I was “destined” for, and instead at a ‘secular’ university where I was frequently insulted by a teacher, many teachers. “What?!” came the screech as I was out of my chair and striding toward the front of the class of 100 students. And which point my philosophy teacher and I would shriek premise versus context at each other at such speed for up to 30 minutes that at times she would simply stop and say, “Time for Wittgenstein now.” And other times I would be left shaking with pent up frustration my finger outstretched waiting for the argument which never did appear in my mind. I stomped back to my desk. (Don’t worry, I got an A – teachers are basically bored and I was at least amusing).

These poor teachers, so much ignorance, so much isolation, and so challenged an individual, I was pushed and pushed every minute. I began to understand one thing, that life was something you either joined in or watched. But whether you liked it or not, this was the only game, and if you wanted something changed, then you had to play. And that meant getting hit, and stomped on. I decided then that I was going to get off the sidelines, I was going to go out there, on the other side of the glass: to stop just thinking and analyzing life, and start BEING in it. I started trying things out, taking chances, intellectually and physically.

I started to become the collection of individual, including myself instead of just a repetition machine of whatever group or person impressed me that year (or some parent or pastor). And I developed the one trait which has stuck with me through the years; a form of believe that I try to live beyond all others and have several times almost died by: That to know what is right, or good, and to do otherwise is the greatest of sins. To be asked to lie, or die, is to tell the truth. There is no consequence, only what is right. Many times, I have been pressed, and emotionally pushed when finding the very person who led the harassment and persecution against me, whose existence has made mine unbearable: finding that they have suffered loss or needed consolation. Oh the hours I gritted my teeth and sat there until I could feel what it would be like to be where they were. To give, to show care without actually caring would be a lie, and I don’t lie. Good must be followed.

I have lost jobs, I have almost lost an entire degree because on this point I would not move. People have said, what if you are in the time of the Nazi’s and Jews are in the cellar and the Nazi’s show up at your door with guns demanding you tell them if there are Jews there, surely I would lie then. I said, no, I would tell them to come back when they have something more legal than a gun and shut the door.

I met Linda and because she believed; believed in me, believed I could be loved, should be loved, that I was something more than a sacrifice, I gave my chains to her; I started what would be an almost decade journey of healing. And she kept me alive. When it was time for me to stand in front of the trucks, she stopped me. When it was time to board an airplane with a one way ticket and suitcases full of cigs and liquor for bribes: or to buy a land rover and fill it with medicine she stopped me. I gave her my heart. No, I didn’t just give her my love, I gave her the ability to determine my heart; to live or die, to stay or go. She taught me that “I need you” is the strongest words in English. I have protected her, I have forced myself to do nothing so she protected herself; I have come to right the wrongs against her; I have forced myself to sit aside as she fights against her nature to right those who wrong her. Every person, every individual person who says something against lesbians, who says something about how disgusting they are…..you are speaking about Linda.

See, for me, I am a beast that is chained, I am inhuman (at least one parent and most of my supervisors have said so), but when others talk, even unknowing, without realizing the implication of your statement about how gross it is that LINDA gets pleasure from being a lesbian, I do not tolerate. And you don’t want to see or hear me when I don’t tolerate. “May your children be born with the worms of death crawling out of them, may maggots eat at your living flesh, and may my hand be the one to bring the coal of your unending suffering to burn forever within you. You will pray that someone had slit you as a fetus from your mothers belly and cry that you had not died in childbirth.” Oops, sorry, got what Cheryl calls a bit Old Testament. Um, please don’t say things about Linda. I do keep a list of every statement and person, from Bishops on down, when the time and the world changed enough to file them in the Hague and have them charged as individuals who perpetrated Crimes against Humanity. Yeah.

Linda is the only person in my entire life who I know has seen all the darkness of me and sees it as light. She is the only person who has not left me. She has been only person who will not try to make me into a lie, to ask me to lie for them, to make them more comfortable.

So here we are, two lesbians in the darkness fumbling our way. No, more metaphysical than sexual, try to keep your mind on the topic. And for us, as this disease has spread in me, while we have progressed, bounced from one specialist and one hospital visit to another has been an unending revelation of horror. It is worse and more than not knowing what day or month it is, but not even knowing what that means, what time means. I don’t know what to do without lists, I don’t know who I am supposed to be until someone comes. When Cheryl left the other day, I simply sat there, not moving until Linda got home over two and half hours later. Why? Because I didn’t know what or who I was supposed to be. I had no cues. If Linda had written, “Write or work on the computer until I come” I would have done that. I know that sentence because we talked about it. I need more lists. I am currently having the failure of two organs at least. We are trying to deal with that, one day at a time.

Linda is there, Linda tells me I will be okay, Linda tells me I will be able to breath again, Linda starts my heart if it stops. Yes, we fight, we get frustrated, I get upset at things that make little sense to her; she moved some things, she took some money from beside my table. I told her, “You didn’t just take my money, you took part of my MIND!” – I have so little functional memory, I have no idea why things aren’t where I remember them except that they aren’t there – another thing not there. So to have a loved one do this deliberately…..tears and frustration. But who is it who stays, who gives me tissue, who carries me, as I am now lighter than I was when I first got my drivers license (and I was anorexic then!), to bed? Who is it who holds my head to drink, who remembers to help me drink (since I don’t feel the need to drink, nor to pee): to remember the dozen of pills, and when I need to have them all? Who fights for me against the over a dozen different agencies and individuals who are asking, demanding that I spend all my energy doing the same tests one more time to ensure that they don’t get sued? Those who still offer no treatment.

I have learned that when you sleep in a coffin, if you don’t choose how you are going to spend those days, others will choose them for you. As for me, I want to spend my time doing what is important; Linda, love, caring for those close to me (which as it happens, means those spread from Africa, Australia, New Zealand, EU, UK, the US and Canada). That slightly confused look on the girl’s face; that same look is on my face several times a day which is why Cheryl and Linda are there. So that, like today, Linda could explain what “pizza” was to me, and that it is good to eat (it is like a thin pie with stuff on top!).

That is my remembrance day; that the people who matter make themselves known. I carry the experiences and understanding of dozens of people now dead but still alive in me. As my Grandfather said, “Always make time for dessert” (and “Of course, I’ll have cookies!”), from my friend who died from Marfan’s, “You worry too much, and you don’t look enough for the good surprises” and then he would laugh. From M. who taught me that laughing is worth having blood seep out of your sutures from your heart transplant at 15. And from the boy who gave the class ex-lax cookies and would be dead two years later; and said to me with a plaintive and honest face, “why don’t they like me?” From him I learned that there are lonely people out there, people who need love even if they only know how to hurt themselves and others. From the children dead, in accidents, in genetic illnesses, I learned things like how to blow a dandelion so the seeds spread across the field. I will not romanticism them, because then I cannot learn what they were telling me. I learned that to bring a child, to bring anyone happiness, even for a moment, no matter how painful or difficult their life, or how much brain damage or organ loss, it is a gift which will both be gone in a few seconds and stand forever. I learned that people will do anything for hope: for more life (so much they sometimes lose the little time they have in such a chase). And I learned that people are so scared of seeing what the reality of being sick and disabled is they would not only rather die, but rather kill off those who might threaten their version of reality (stay away from these!).

I learned that family are those who genuinely act like family, and sometimes the most silent members are the ones who listen and know how to be there at the right times. I also know that I WILL die, and that by doing so I will cause Linda and Cheryl and maybe many others unbearable suffering. For Linda it will be suffering by the minute, by the hour, stacked in bricks.

To know and do nothing, to know and not create memories that are good, that isn’t me! I will not lie, I have been in considerable pain (and I mean pain that leaves you barely conscious, when it does). And if I want to stop getting weaker, I expect I will have more pain. But I will give Linda minutes and hours; give Cheryl minutes and hours, and give my real family, those who care about me, the minutes and hours that will help them remember, the real me. Because anyone can scream in pain, but only I can turn it into a sexual innuendo. I can make people laugh at the worst of it. I know the worst of it and haven’t shown you, and from now on, I think I will know more and more of it, and maybe things unimaginably bad. But I will fight, sure, to live, but more important, to spend the time I am alive helping those who matter know me; see me; remember me. Because some day I will be one of the dozens of dead who make up OTHER people, and I can’t say what they will remember from me. But since I am NOT dead, that is still malleable.

This is who I am: the dreamer who will wake something inside you that you did not know you had. I do not wait for God, I do not wait for people to be better, I do not wait to be treated better: a new Jerusalem will rise, because people will change. Because I KNOW people CAN change. And if it is possible, even it is considered impossible, then isn’t it worth believing in, taking joy in? I am GLAD I sent out postcards. I sent out two postcards yesterday. I will send out more this week; I am glad I reply to comments, I am glad I reply to emails. I am in pain, I am tired, but I am determined and I am going to be happy too. No, I’m not always happy, and never at peace. I am a human after all. But because of something I thought of in my head, I have dozens of people helping me send out postcards to over 250 people. Over 800 postcards have gone OUT, just from me, with the help of so many. And how many more postcards have come in to me? A few hundred when you include letters and packages. And six months ago, this wasn’t even an idea. So because of an idea, and not to get hokey, love and the willingness to risk my heart, myself, to leave myself exposed and to act without caution, without a net, to give it my all. The postcards go out to five continents, and as for my other projects, they too will rise. And if every postcard that was sent was torn up immediately, it would STILL BE WORTH DOING. Because better to be a stupid dreamer who loves a dream enough to live it, than a person who risks nothing, changes nothing and believes in nothing. Not a single card sent to me has been destroyed (well except those guys sent with their pictures of their penises). Because someone cared, someone changed the world.

Linda believes in me, Cheryl believes in me. They believe in more than that my dream of postcards starting a worldwide change in people caring for each other in a tangible way (hey, the larger the object, the harder it is to get it to start turning – and six billion is a large mass, but it IS turning!). But Linda and Cheryl know that I care about the two of them more than I care about myself. And yes, that I will get it wrong but that I will figure out how to prioritize so that we have fun, so that we ALL have fun. Aren’t you tired of being sad? I am. Pizza is a kind of pie that you put things on; dandelions spread when you blow on them and that stomped leaves sound cool. This is my remembrance day. What is yours? What will yours be?