I have been falling a lot. Literally. Either my arms can’t support me or I lose direction and I fall, transferring to the toilet, most nights on the bed, once I fell backwards all the way to the ground. There are some bruises on my elbow, a crushed fingertip. You know, stuff. And it turns out that both Linda and I have been wondering if this is it, if this is as good as it gets; this is what it is going to be until I die. Will they get an electric wheelchair here in time before I need a sling for transferring. My heart has stopped a few times, and most nights or afternoons is so painfully erratic I have to take extra masking pills. It is erratic constantly, and has stopped for over 10 seconds more than a couple times. I am thinking of going to the hospital and finding the doctor who helped me before and told me I could have a pacemaker and see if this is the right time. Because I want to live.
I asked Linda how she would rate my health over the last six months and she said that it has consistently and constantly gotten worse, “But,” she said in an exasperated voice, “your productivity, has gone UP! At the same rate of your decline!”
What does that tell you? I asked.
“That you are determined! But the postcard project didn’t even exist six months ago!” she said.
I corrected her, “Not determined….desperate.” I will make a miracle; specialists may not, doctors may not, the health authority may not but I will make a miracle. But I can’t seem to stop my body from going down. I hope in Marathon terms that this is the Wall, and I have a good quarter of the race to run.
Linda has been snapping at me, making big issues out of little ones. We talked and found that it was because she has seen me like this, day after day, weaker. My night worker last night told her I was too weak to turn my head, or lift it. That I had to knock for help after I lost trunk support and she had to come hold me up to brush my teeth. The night worker was concerned, Linda was concerned, and feeling helpless so her only hope now is that maybe if I get more sleep I will bounce back, I will have a good week, things will pull up. And because she is helpless and scared, she snaps at me, because she doesn’t know what to do. And I understood and we cried. I didn’t tell her of the anger, I feel. The pain every day from the taste of NOT BEING ALIVE. Give me another year, two years, five years. Make me the town nutcase, but let me live. You know the grief that makes you want to scream, to have the aching ripped out of you in the sound of your emotional pain? I have that, I feel that almost every minute because it is here, and I am doing every trick I know and I am still falling, I am not getting better or stable, if anything, my body is falling faster; it is hard to breath now, it hurts. And eating is difficult, it spends a lot of my energy to eat two meals a day, so I eat one usually, if I can. I am physically tired and everyone has been making nice comments about how pale and crap I look so I put on base foundation and powder every day to look healthier.
I wanted to write a post about whimsy, and I did it, yesterday, about Yaoi. And it was true, but at the same time, I was fighting. I fought to get up that hill to badminton. And I didn’t have the strength for three games, I just played two. But I went. I had this same woman who seems to take a point loss from me as a personal affront so she drops them sideways and tells me, “Still can’t move sideways can you!” Nope, I tell her, didn’t bring my wheelchair teleporter today. Well, at one point, she had dropped for the third time and I was so far over and still couldn’t reach it with my racket that I crashed over in my chair. And with a growl I started pulling myself two inches at a time towards that birdie (my racket had flown out of my hand when I fell over). I was tied into my chair so I was dragging it with my lower body and still growling, after about eight forearm over forearm drags I reached out, grabbed the birdie and threw it by hand to put it over the net. My volunteer was there to help me back into the chair. “I got to the birdie a bit late!” I told her.
I don’t know what they think of me, but one of the coordinators asked me later if they had badminton wheelchairs. I said yes and explained they were like tennis, and had a ring and cantered wheels for not tipping. He said since it is “sports equipment” that the Y should buy one and then different people could use it during the week. He asked how much it was, and I said about $4000. And he was like, “That’s all, oh, we should definitely buy one, since it is sporting equipment.” I just stared, I mean, this and the other coordinator were the two people we had to make a complaint about like 5 or 6 months about because they didn’t want a wheelie slowing down their game. And now they think that buying a wheelchair for badminton for more people to use is a good idea? And last week, the same group that refused to play with Cheryl and I were asking how they could be more like me, because the tall guy in the foursome was out of rehab for an L-spinal injury (very low Para). I know I say that everyone will be our ally eventually, but when it happens, I am sort of ‘deer in headlights’ waiting for the truck to hit.
During my game out, I was talking to one guy about the Postcard Project and two other guys in their 20’s heard me and they were like, “what are you talking about?”
I explained that I sent out postcards to people who had disabilities or wanted to get a postcard.
“As a joke?” The one guy immediately responded.
No, I said, it wasn’t a joke; I said I write for disability and other journals and I tell people if they don’t get post/mail or they are stuck inside, or just want some mail to make things a bit brighter that I would send it to them.
“So it is like a form of cruelty?” the guys asked.
Cruelty? What? No, I said, these people, some don’t go out, they don’t get mail, I send them mail so they have mail. This isn’t a joke.
They couldn’t get it. “But doesn’t that cost you money?”
Yeah, it costs for the postcards, because I need to get all kinds and then I like to put on stickers and block prints. And for the postage.
They just couldn’t get it, like if it isn’t a joke, why would I do that?
I told them that no one cares when you are disabled, and I was tired of waiting for other people to care; so I am telling people, you send me your address, I don’t care if you are depressed, lonely, disabled or just want post, I will care. It stops here, it starts here, I am not waiting for someone to care: I will care.
Well how many people are there.
I said, right now it is just over 280.
There looked at me like I has some serious head issues (which I actually do).
I started telling them about how I need postcards for all types of people, for kids, and postcards for couples and for gay couples.
“Are you sure this isn’t cruelty?” One broke in.
“You are sending pictures of gay guys to people, that’s sounds pretty nasty to me.”
I tried to explain that the people REQUEST pictures of gay guys, and I said, then there is the need for lesbian cards as there are lesbians and lesbian couples and there isn’t a lot in North America (or they cost a fortune) so I get them from Japan.
The other guy broke in, “I have an aunt who is a lesbian,” he said, “She’s had the same ‘roommate’ for like 25 years…..we call her UNCLE MORTY!”
“Score!” his buddy said they high fived.
I wheeled on and they went to play because quite honestly I just couldn’t believe they were telling a lesbian they play badminton with every week they call a FAMILY member “UNCLE MORTY” for being a lesbian. Well I do believe it in retrospect since I have no idea what my family calls me. Still, too flabbergasted to say anything but wheel on. Maybe ‘chicks in chairs’ can’t have a sexuality. I don’t know. I told my volunteer who had joined me by this point that those were the type of guys who would run me over in a truck one day.
Those people exist, and they outnumber me, greatly. Someone said 70% of people are scared of disabled. I can't overnumber them. I FORCE myself to respect them as advocates who don't realize it yet.
So, on that note, here is a quick Yaoi survey. We have the previous Seme and Uke couple, where our younger Uke had been caught cross dressing for money and dragged off. Well it looks like they have made up, but what is it with Seme’s and smoking, not my thing at all.
Now, this picture is um, not exactly very gender bender, nor does it leave much to the imagination as to the orientation or inclination of what is going to happen (Uke, struggle a LITTLE, don’t just have that look on your face, I mean it is RIBBON for goodness sakes). Okay, that is about as blatant as it gets for Yaoi, at least as blantant as it will ever get on this blog (sorry, for those who want MORE! Same applies for Yuri, the girl, girl action!).
And now to return to yesterday’s artist we find the couple back in another classic hetero female fantasy, the “swept off the feet and carried off”, the white wings almost give her…..er, I mean him a veil and look of a wedding (or one in the future). Definitely gender bender yaoi.
And simply because there just hasn’t been enough Yuri lately, I will slip this picture in before I get back on subject. Ahh, what exactly has the impish faced girl said to make the other blush so. No really, I want to know so I can use it on Linda!
Anyway, I have had some very difficult emails, and some very difficult moments during the last little while. Today, Linda came home for lunch. She said she is concerned because I have purple hued arms and I can’t get enough air. We did some sorting. There is a book faire this weekend and my lifetime collection of books are being sorted to sell and raise some money for the concentrator so we can head off to Seattle. Books I bought from auctions, bought I fought for, books I starved to buy, books I bought when I worked at my first full time job in a bookstore. I opened one door on the 18th century german wooden carved bookcase and there were my treasures; authors I had traveled all over the UK and Europe to find. Authors forgotten, books unremembered. Perfect printed children’s readers from 1892, 1883. The Quarter bound leather in gold of the Aldine, the art journal of America. The original printing of the Strand where Sherlock Holmes first appeared. “I just wanted to own these books all my life, even if it was just to touch and know I had them.” I told her as I tried to stop myself from crying.
“You don’t read much anymore.” She said.
“I KNOW, I can’t read,” I said, I had revealed this to her recently, my eyes don't line up, I have a hard time with some words. “But someone could read them to me.” I found my first edition of The Watchmen and thought of Victor, who talked about it recently. I kept that. I kept some, I let some go.
There was every book, I sent him from all over the world. He liked ships, cruise ships. He was dying from the same disease I am now dying from. He couldn’t read either at one point. I got him books on the P. and O. Line and all the cruise ships he had been on. Pictures he could look at. How do you hawk that out for $30 for someone else’s Xmas gift? You just do.
I have no companionship, nothing during the days, so I got myself a new mousepad, this one. Because the management won’t allow me a cat, not even in a penned area, not even as therapeutic value. If they could, they would evict me for having put in wheelchair bars.
Am I losing it? Oh yeah, big time. The post/mail I get helps, and Linda reads the letters to me. I am not the person some people think I am, I am a weak vessel, I am doing what I believe needs to be done and I am going insane. Because two guys who are yahoos and think that sending postcards to people with disabilities must AUTOMATICALLY be a joke make me struggle, make me think that is what I am. I am terrified because I don’t get a “do over”: no energy much less time. I do not want to live simply because I am greedy (or maybe that is part of it) but because the parts of leaving and grieving are so damn painful. To see how our lives are sucked into more appointments leading to no treatment, or more meetings with people who have lied to us before. I want to be with my books, I want to be with Linda. And it is making me the mad woman, the Miss Havisham ready for a event and life that every day passes her further by.
I don’t want to sound wacky but I have spiritual thoughts and no, they don’t extend beyond this life. But I believe that I suffer for purpose; I think I have been made strong in coming out, in all the trials of my life and Linda as well so that we can face this. I DO NOT BELIEVE GOD LEFT when I got sick. No, CHRISTIANS left, but God was there. And whatever deity you believe, I believe that this: that I am learning more, I am meeting more cool people now that I ever have before in my life. That I, for reasons I don’t understand, have the chance to ask people if they will change. Isn’t that the greatest achievement of whatever religion, to CHANGE for the better, to become a better person? That is my challenge, to change, while it rains crap; to ask others, to give others a chance, if they want, to change too. That is their choice. I would never take choice away. I just worry, scared that I am not doing it right, that I am screwing things up. And I have only one shot. Should I have written books? Should I have been less open and more gloss, more happy endings and lessons in 800 words? I don’t think so.
My scars, my frailty, my hurts, my ego, bruised, then broken, my sheer fucking determination says that I am one of you. We are the same, battered by the same world. No one is coming for me. There is not going to be a miracle because God is here. And no, God doesn’t hang around people who aren’t AB just to hope they become AB. If She or He didn’t believe I could make a better choice, then this would have no point, would it? I would be suffering without ending. I don’t believe that. I won't.
I don’t believe in getting spiritual points or any of that: I believe that every day, every week I have choices; and sometimes all the choices seem bad, except how to deal with them. I don’t know. I don’t try to ever talk about disability in general because everyone has to get through it on their own. They find their way.
This is my way. I am trying to take something unbearably painful for me, for those like Linda and turn it into something good. This weekend, more postcards will go out. And next weekend, and every weekend I am alive. Do I think sometimes, “Will I still be alive when this order of postcards arrives in six weeks?” Yeah. I do. And no, I don’t send it to be cruel. I send the postcards and the gifts to show you that in a world where so little care about anything but themselves. I suffer from that too, but I care about you. I do. And because I do so much, first two and now more people believe it too. Yes, you, the person reading. I care about you. I will, if you let me, send you a postcard. I will, if you let me get to know you, send you a gift. Nothing big, just something to say I thought about you, during this week, cared about you.
But now for some reason, other people believe too, believe that after almost 800 or just over 800 postcards, I will be there. And they send postcards. Postcards coming in, from all over the world, for the Postcard Project. And stamps for shipping them out. People had a chance and they changed. They took a chance on me, they believed, having never seen me that I do care; they cared themselves and wanted to help me. I can’t help but cry, I can’t help but be terrified but not petrified because I am not, cannot ever be a person good enough to live up to what these many people believe about me. But they changed and acted and now the world is a different place. So I act sending out cards sent from Australia, from the UK, from countries across the EU, from the States of America and Provinces of Canada. We post to five continents…together.
I can’t die yet.
It was pointed out that it was a year ago I started blogging daily, at the Namblopro (which sounds like some porn event) but is the blogging every day in November. Once I commit, I commit. As long as this body functions in some capacity, it is yours. I am a different person than a year ago; brain damaged but better, I am a BETTER person than I was a year ago, because I decided to care, and to stick to it. And you gave me that chance.
1 hour ago