Brain damage and knowing when to go

I used to think that the most important thing was that people should know ‘who I am.’ And thus I stacked up a string of accomplishments, because I was a shallow, self-absorbed twit. Then, I used to do things because they hadn’t been done before; first in my family to get a masters degree, first to a doctorate, first to run a marathon, first to…. Because I was an externally driven twit.

But then I guess we all are in some way or another, as it took me until 19 to start to realize that I could be what I wanted to be: instead of simply NOT being what my parents wanted me to be or being BETTER academically than my older brother, or the other odd drives a youngest child has. I realized I could decide who I wanted to be for myself.

I have granted several awards from different people, Lisa over in Questioning Transphobia gave me an award as a Certified Honest Blogger. Which makes me feel honored. And winning E for Excellent at Andrea’s Buzzing About. Again, humbled and honored. As Cheryl would say, I am about to go “old testament” in my thinking. I cannot accept these because the awards require that I pick others; other blogs to label as excellent, or honest. I do not display awards won in voting even the top lesbian Canadian blog (which I told you to vote AGAINST me!), because something is true or it is not. And I cannot say that this is true. Which is why of the 20 or so awards I have won for my writing, the only one I accept is the Book of the Year award for 2006 for Zed because it was from a collection of book owners, librarians, and readers who annual say, “This we like.” They are not like the Booker Award saying, “This is literature”, but just, “We like this, a lot, so much we gave it gold!” Okay. I can accept that. I cannot and will not judge another human being if at all possible so I am in a way disqualified from getting many awards, but humbled that the people thought of me, in listing them.

That seems like a long way to say that for me, what has been for over 20 years important is to be true (in the most ancient sense): to care as much as possible, to not hurt others when so hurt myself that I cannot care for others, and to seek to create what it true, not what is popular or fashionable. This actually was most of my Ph.D. dissertation, that what one person likes, just because they are the head of oxford, doesn’t make that a better work, it just is more likely to make it a famous or work required to be studied.

Which is how we get to why I am thinking of having Euthanasia.

I have brain damage which produced emotional liability (an overreaction to stimulation, which is not just a reaction, but an uncontrollable reaction), and severe and continuing memory loss. My liability and loss combine to create states which are not unlike those of someone with Alzheimer’s, that I interpret the context, I remember an incident (which may be months or years past) connect it to the current event and have an emotional reaction. After the reaction, particularly if I have a seizure (and fatigue and high emotion are both triggers), the memory will likely disappear.

I have picked up, or learned that I had such a reaction on this weekend. Of this I have no memory whatsoever. Yet, I am informed that due to my emotional liability I stayed up to 5:00 am because of this, either upset or crying. My care givers will not tell me lest it happen again. It appears that for several weeks I have been emotional hurt and argued with people close to me, reacting to what they said. And yet I have no memory of this. Indeed, it sounds impossible that I could not distance myself from the situation. That I would or could hurt people important to me emotionally and not remember, or that I felt emotionally hurt BY them and not remember. And yet, a day or two ago, someone close to me said something, and I responded in what I BELIEVED to be a rational way, pointing out that what they were saying was an exaggeration, and gave an example. I was told that my example was not recent, but from far over a year ago, and this counter, along with the realization of my inability to explain myself and my views rationally without displaying the evidence that I cannot do that made me burst into tears.

Those close to me are burning out, because now, there is no set aspect, but I will completely forget things told to me a day or two ago. Even the morning before becomes hazy. And when people I trust tell me how I have acted, or what I have done, it simply doesn’t seem possible. It doesn’t seem that it could be me.

I am told that I get reactive and cannot emotionally see beyond situations, or even phrases. That I become obsessed. And yet I remember none of this. That I burst into tears for hours. While obsessed sounds a bit like me the rest does not. But to be obsessed to the point of damaging myself, to hurting through callousness others? Who is this person? Just hearing about it from people I trust makes me loathe myself and my skin. That I have disagreements, emotional ones where both parties are hurt and yet remember NOTHING a few days, even a few dozen hours later?

It has reached the point that for my caregivers, they are careful not to react, realizing much like someone with Alzheimer’s, that my asking the same question or being upset about the same thing is not ME, it is the disease. And that when they lose sleep for the third or fourth night in a row because of seizures or other conditions it is not ME, it is the disease. Except it is very hard to do that, even for a short period of time. Which is why I know those who have loved ones with Alzheimer’s call it a disease of intense cruelty. Because eventually the loved one, the caregiver DOES snap, does lash out verbally and hates and regrets what THEY are becoming too. That they are burned out.

Which leaves me, the intelligent, humorous me hearing second hand from my partner or other loved or trusted ones that they need to be away from me, that they won’t be around me so much, and I can’t understand why, I don’t know what it is I need to change. And as much as they say, “It isn’t you, it’s your disease.” It still feels like I, the friend, or companion, or lover or partner, am the one who is being left behind. Because so much of me is starting to be taken over by disease, by this disease.

There was a time, when we talked earlier in life, that if we reached a place where I knew that I was hurting others, that I could not reasonably enter a home care facility, that I had cognitive facilities but that I was aware enough to know I was hurting those I care about, it was time. I don’t know if that is true of this moment or month, but at what point do I wait until the memories of those closest to me is that of a overgrown and highly intelligent child: unable to control emotions, overreacting, often reacting for extended periods and then forgetting and starting all over. How long until they begin to hate me, and that memory is all THEY have, while for me the recent past is gone, the middle past is spotty. I know more about high school than I do about last month; and I know more about Los Angeles than I do about Victoria.

Some of this is vanity, I admit that. I at first would not be with Linda, partner with Linda because I knew, being human, that I could not help one day but hurt her and make her cry. And if I could not live up to the perfection I felt she deserved, I didn’t want to be the one to make her care, and then cry. But I grew, and Linda grew and we fought for our relationship. This isn’t something I can fight. This isn’t something I can “work on.” Because even if I talk and talk and decide I am going to be different in way X, in a day or two, I will remember nothing. I talk before sleeping because I do not know upon waking if I will remember what I said before laying down.

Perhaps this, like many things before it (Oxygen deprivation, muscle wasting, fatigue, pain) is just the cycle and progression for this month, for this time period. I hope that is so, because I can hold on a lot longer as a clear headed person remembering Linda and the life we had together while my body fails, than I can as a person whose mind, emotion and reason fail leaving the body to falter and fail after draining the energy and patience of all those who had, before the nights and days of care giving, cared for me.

I will continue to communication, day by day, day section by day section to Linda and Cheryl and others. Asking what have I done, what am I to do, who can I send a postcard to, who should I send a surprise to, and have I asked Linda to do anything with me recently as a partner instead of a caregiver?

I am not even sure how it is done; do I look at pictures and try to remember things and write goodbyes. Do I have a party? Or is there some line of decision when I cannot remember the daily routines, cannot remember the morning, the last hour where I say, “This is it!” and how will I know THAT is a rational decision. Because even if I make the rules to that line today, I will not remember by weekend. Already I have no idea if I am posting the same posts on my blog, if I am having the same conversations about the same things to people I meet, to people I see regularly, to Cheryl, or Linda. I know that I do, as Cheryl and Linda at least will tell me, “we did this already.”

Is it when I recognize Linda less as my partner than the times when I do, and who, besides Linda or those around me would tell me? How am I to know? I only know what I know from picked up conversations and “But you remember this weekend, staying up until 5:00 am!” But I don’t, I don’t remember Monday really, much less Sunday. And so this post has to be written today before I forget that I am in some ways not the person I thought I would always be; that I am childlike, yes, delighting but also highly fluctuating emotions, with no understanding of the pain that I am in, or the limitations that I have.

I have not hurt people, at least not physically or deliberately, I have not said anything to deliberately hurt anyone so there is that; though I have hurt those I care about because we are so close that my emotional reactions are painful to them. And there is no cure for that, it seems, not for my disease.

But I fake very well don’t I. Except to those who have to clean up, and cuddle me and find me as I live now. I am afraid of things but not knowing why, afraid of care givers coming in but not knowing why, afraid of noises, of phones, of so much fear but not remembering the incidents that created the fear.

And worse for me is the fear that I WILL become someone who hurts others. That I will stop caring, stop knowing how to care even for myself. Time to go, then, but when?

Am I a liar?

You remember the saying about not listening at doors because you might not like what you hear? Well, recently that is what ‘trackback’ has been for me. Trackback just tells you why people come to your site and sometimes/often it is a little odd. For example my Hello Kitty Yuzen pictures got some links from Hello Kitty enthusiasts (Hello Kitty in Kimono and Fan, Squeee!). And my pics of Kakunodate got mega hits among a forum dedicated to tea. This was because I was shooting pictures of examples of the bark art (It was pretty!) which happened to be tea holders. These specific holders are collectibles for tea lovers because they come from only one place and I happened to be in Mecca, as it were.

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.

In his last weeks, for over a month, he ran and then crawled into his van and sobbed, because of the pain. Sometimes he couldn’t leave the van in the morning because he was so tired. He cried and then would get out and run. Finally, he stopped because he couldn’t breathe, and it was found that cancer was in both of his lungs. While in the hospital, though he could not run, he outlined and worked with Isadore Sharp (President of the Four Seasons Hotel and who gave Fox a room in Montreal) who wanted to create the Terry Fox Run. Terry wanted no winners, no awards just participants and the goal of money raised for cancer. A few months later he got pneumonia, went into a coma and died on June 28th. How could someone have cancer in both lungs and go out running with a prosthetic? How could they feel that level pain of that for over a month? The pain he documented was incredible. How could a person do that day after day? Gosh, he must be a liar, right? Even on his last day, coughing and with pain in his chest and neck he ran, ran his miles before going to the hospital. Even in the hospital he did films for Cancer Canada. Gosh, it just doesn’t ADD UP! (By the way, this is the polite Canadian way of calling someone an asshole, except in the Maritimes, where they just go; "ASSHOLE!").

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.