But then there are the times I find out that I have been linked to Devo sites (devotee), which doesn’t happen anymore as Devo’s like frail, crippled but LONG LIVING girls to drool over. But recently I have gotten a slew of hits from a couple places where people are concerned about me, my condition and posted about that. And the response there from some/a few people who come/came to read the blog by some has been (I will summarize instead of quoting): I don’t believe it. She may not be making it ALL up but how could someone be so sick and yet post so long every day? How could someone have brain problems and say they don’t remember stuff and yet have such coherent posts, which are perfect? It just isn’t possible and I think this is someone who likes to write and is making this up, like a story.
So after the slap in the face, how painful it hearing that? Well, after telling the personal and often humiliating intimate details that really you would rather people not know about (like telling people you are about to pee your jeans and their living room floor), or having a fugue state when you mentally are 17 and giggle and make embarressing statements, or when you post pictures (not that flattering, and showing hair loss) of yourself in various vulnerable situations to find out someone who reads, or many people who read think you are not just a liar but an amusing storyteller? It hurts a lot.
Linda was not amused when she saw it because she says that things like this “get into your (Beth's) head and they just don’t stop hurting.” Well, true enough.
What hurt me the worst was that the “tell”, the part that gave away that I was a liar and a fake was my posting every day; and the nature of the posts themselves.
See, because once I make a commitment, I keep it, regardless of circumstances (if humanly possible, and at least try if not humanly possible). And my commitment has been to post once a day and to reply to every comment; and for the most part I have done that.
What started my recent post, A Letter on dying, was the reality that everything from the mundane like dressing and getting a shower, to writing a post, were things which once took a short time but now was now taking ALL the time.
Anyone who has read the blog over time can recognize that my style, or rather the eloquence I once had, I do not have. Before I could make you cry because I was a writer, and I wrote out pieces in my head, including timing and that skill was honed after more than a decade of writing 1000+ words or day, five novels and who knows what else. Now I tend to write in declarative sentences and try to get the story out, which may still be powerful, often because it is about a real person and I attempt in writing and edits to tell the truth as honest as possible whether painful or not. I don’t have the same language skills, though my writing still far outstrips my speaking (depending on the schema), and until the TIA’s and seizures stop, I may never get back what I lost. Some days are better brain wise than others, and a few times since the big Brain go Boom, I can still do a blog of research or bringing diverse things together, but that norm is now an anomaly. But I did, as far as any human could do, keep to my commitment.
I have written with one finger when that is all that functioned. I have written with one hand, or the thumb and index of both hands, I have had Linda reading out what she sees on the screen because I can’t see correctly (neuro issues). I have dictated posts. I use a speech program. I have had seizures and been on the floor and started writing from there. I have had days which had seizure after seizure and instead of going to bed, to sleep or rest, be it midnight or 1:00 am or 1:30, I write, as long as I can see, or someone around me can see, and I can put three words together in my head or type it, I write. You can go back and see some posts were put up at 1:00 am, some at 2:30 am, and a few at 3:30 or 4:00 am. I do not sleep until the job is done.
Writing and posting are one of the few ways I have to demonstrate or feel I have control over a disease which has and is taking away the most basic and fundamental aspects of control. I have lost or am losing the things we don’t even think about because we are so used to controlling them including eating, sleeping, breathing, drinking, talking, how well I think, limb and digit control, sweat, heat, bladder control, fecal control, skin falling off, hair falling out, nails falling out, wounds not healing, blood coming out of orifices and non-orifices to name a FEW.
And yet, even with all my “You are NEVER going to stop me” determination to post, it wouldn’t be enough were not for Linda and other people, like Cheryl but also night care workers who have assisted me. Often to write a blog I need an account from Linda, “What did you see, what happened? What then?”: then I call or Linda calls for me who ever else was there I call and get an account from them. I combine this with what I can remember. I look up anything I am not sure about, or write around it; often having to go back and read my own blog posts I can’t remember writing. But oddly, I trust that I am narrating the truth, so I use that info. Then I write.
Now my grandfather painted for several decades and liked watching wildlife, and in his older years, he couldn’t always remember things, and even after he had a shunt put into his brain he liked looking at ducks, and other animals and he knew how to paint. I have dedicated my life TO writing, and every day I spend time reading and watching shows, saying words I see (subtitles) or read over and over again. Because I know that my best chance of having a sharp brain is making the connections I need. Sometimes I cannot write, or speak and I post nothing at all or have Linda write. But if I can think, I can write. A person I know was thrown off a snowmobile so hard his helmet strap snapped and the helmet flew off. He was found after who knows how long. He wasn’t able to speak, and last I heard, still can't, but with the help of a computer, he is able to write.
My Brain? I don’t have front lobe brain damage, but some form of left hemisphere damage and a limited right hemisphere damage. How do I defend or even write about what I don’t remember, that seems an oxymoron to me. But actually, due to memory loss, certain aspects of things I studied earlier in life are more accessible to me (much as for older people the tastes, smells and memories of candies and other objects from childhood become vivid). Most days, I remember very few people, on bad days next to no one. I suppose the cynical reader could call up Beacon home support and ask them for the incident reports from care workers on memory…if you want to be an invasive asshole who cares more about whether what you think is right than my right to privacy and dignity.
When I write a postcard, I have a name on a sticker printed by Linda, I look up the name on the computer and every comment or email the person made comes up and I read them (this is why it takes 30 minutes or more a post card). Once I have some idea of what to say, I write the card. Often within a week that memory is gone. For example I found today that a response to the last comment of Frida's about heart rates was answered in a post on her blog from what Linda says is recently (one hand of fingers). She talks about her meds and her heart rate. I see there are comments, I click on the comments, my face pops up. I was the comment. I am talking about cocaine, so that SOUNDS like me, but do I remember it? No.
But then, how many of the disability bloggers out on the net write about their disabilities in exacting degrees with pictures. Not many. And the point isn’t that I need to prove my disability/disease or not, but that of instead of someone taking a shit in my hallway, my private place, I went out in the wide world of the web and started posting this stuff. And apparently ON the wide world of the web you are free to attack individuals and call them liars because golly, how COULD they be in so much pain, and so affected and still keep going? How could they, with only a couple good hours a week convince the people who care give to help her do wild and crazy things (or actually “normal” things which would have been but a small, small part of her life before getting ill). So while I go and DO things instead of stare at plants or whatever us fucked up disabled dying folk are supposed to do when we have energy. That makes me a liar? That makes it "not add up".
I was told by the AIDS group at Pride, after I wheeled across an unaccessible hill to go find “a support group” and essentially get away from them and be with ‘my people’. (My people?) Where do I find a one in a million presentation like me? Or that support group (on the net it turns out!). So, yeah, got dissed, got told that AIDS groups aren’t interested in people who are dying, because AIDS is all about LIVING (I’m actually quoting here). Since I was in California in the 80’s, I find that kind of response along with the "I don't know where dying people GO" to be pretty much what Reagan told the people WITH AIDS, didn’t he? Go back to ‘your kind’, and stop bothering us because America is all about regular diseases we FIGHT and about LIVING, and TAX CREDITS, and WARS, not about YOU (and your wierd and scary disease). The one thing PRIDE taught this year is that in this town, when it comes to LGBT, you die alone.
Anyway, back to me being a creative liar. The thought of people reading my blog as some sort of work of entertaining fiction makes me feel ill. I suggest those readers head up to your oncology hospice if that is what rocks your boat (they just vomit to make it look convincing!), but get the fuck off this page. I can’t make you go, but I can say what I think about a person who would rather believe a person is a creative liar than a brilliant woman with a rather fast and horrid terminal disease who refuses to let any obstacle, even the gaps in her own mind stop her.
So it seems some people can’t believe it (the me, the posting, whatever). Well, let me tell you about my friend Terry Fox, another one of us liars. He ran an average of 23 miles a day on one leg, and a homemade prosthetic.
I am not dead, I am dying; and I won’t know all what I can do before that happens until I TRY will I? And I am not going to roll over and whimper just because I can’t remember some names or faces or years or speak on some days. Maybe what I do, or how I act or that I spend up to 12 hours a day to write a post seems impossible or illogical. So also might be the fact that I have only now just recovered from my Canada Day 10K and I am going to look for another race. But that just shows that you aren’t me (and aren’t we all glad about that, because even 100 E.F.M.’s could be havoc wrecking to ANY city).
And while I have never wished what is happening to me on anyone, I came close, for a minute or so when I read comments about people speculating if this was some grand fiction from an aspiring writer. The people who know me, know, and for those who have closed their heart to others, what is there to feel about THEM but sympathy or pity. And since the post, A Letter about Dying got Linda and I dragged back into the “Okay, we’ll go to the US for a doctor.” Maybe there IS a treatment to delay things. I’d love 18 months: that’s my goal. Because to go to Sakuracon (Anime Festival in Seattle), I have to make it to next year.
As for today I lost speech and the use of my left hand for quite a while. I wrote some emails, I wrote this, and life goes on. It is too hot to go outside. The bed allows me to sleep longer with less pain. That is good. Really good. I’m not sure if I would say it is $4000 good, but still good.
I wish people would understand that having a complicated condition which SHOULD be terminal doesn’t always mean it is (I could point to some people but that is their story). And also that people live their conditions, their disabilities and yes, their dying in their own unique ways.
So is it a surprise that the person who used to climb naked up on her roof might also have to be forcibly stopped from dropping things on her feet because she can’t feel them cause 'it's neat!'. Or that a person who ran 200 km a week as marathon training might have a slightly different idea of what is and is not possible.
When I was hiking I hiked with a couple who at an age something older than 65 (I never asked, not polite) decided to hike the AT. They were doing 12 miles a day with full packs but the husband (both him and wife as thin as sticks), kept saying he had ankle pain. After being with them for eight days, they hiked down into town. His ankle was broken, and yet he did about 100 miles on it carrying a pack over 50 lbs, and doing elevations of several thousands feet a day. She hugged me and cried and we talked. He wasn’t quitting, he was going to drive support for her and meet her at every road until his foot and ankle could support his weight. They would post all the food ahead. They weren’t quitting. Maybe not what seniors and grandparents are supposed to do? They weren’t liars, they weren’t quitters, they were just doing.
One way or another, no matter how bad this gets, I’ll be doing. Post on the blog, postcard, maybe in the end post it notes, who knows. But that’s who I am. Okay.
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