Saturday, February 25, 2012

Sense of Loss

We talk about loss as something we need to grapple with when we lose other people, money, family relationships, a car or home perhaps. But we rarely, if ever, talk about losing a crucial part of ourselves. It seems that collectively, as a society, we only own (and therefore can only lose) things that are external to ourselves. Even our own bodies are somehow external - losing an arm or a leg or a breast is serious, but ultimately we learn to live with it.

But what happens when our loss is internal, is crucial to whom we are on the inside?

I had a neurological incident  a while back. Sorry - that is my best estimate for time. As it is only February I am certain it wasn't this year - it might have been early last year, or any time the year before that or even the previous year. It's hard to tell - as the Australian poet Kenneth Slessor says, time flows like a hundred yachts, and I was never good at keeping count, even before the incident. I have a deep suspicion of time as our society sees it, as a linear phenomenon running in a straight line from the past through the present to the future - I've never found that perception of time to be credible.

I took my daughter out for dinner on the day in question. We went to the local club, a short walk around the corner from home. We ate roast animal and veggies, and talked, and laughed. As I haven't been a big drinker in many years, the strongest drink I would have taken was orange juice, but more likely I was on water that night, I usually am. The plan was to have a coffee and dessert in the club's coffee bar afterwards, as they do wonderful soy capucchinos. We never got there.

With the remnants of our meal scattered all over the table in front of us, I became aware that I couldn't reply to something she said, then almost immediately became aware that I couldn't move at all. Then my hearing faded. I made a huge effort to move, and found I couldn't. I made a huge effort even to move my eyes in my sockets or refocus them, and found I couldn't even manage minor movements like that. By the time my daughter noticed something wrong, probably only a few seconds later, I was already deaf, but I could see her mouth the words "Are you all right" to me. I wasn't, but I couldn't tell her. She came around to my side, and put an arm around me as a sign of her concern - I couldn't respond to even that simple gesture. She said something else - I didn't know what it was.

After what seemed like a long time of us sitting together like that, my hearing gradually faded back in. Then  was able to move enough to be able to move my eyes. Then after a while I could talk again, but I could hear that my voice sounded funny - not slurred, but nothing like it usually sounds. Talking was also very difficult. I let some more time pass, then attempted to stand up. I could manage it - just. We decided to walk home - home was very close - and ring an ambulance when we got there.

Walking was -er- interesting. I stumbled a lot. I was not unaware that I was leaving a venue that featured alcohol, and I felt shamed, I felt as if stumbling all the time and requiring my daughter's support to walk was a bad look, and would make me look like a drunk even though I was stone-sold-sober. On the way home I kept tripping up over my own feet, I stumbled over a kerb and collided with a telegraph pole that I could see perfectly well but somehow couldn't avoid.

Because one of my brothers had not long had a triple bypass at the time, my daughter was terrified  that I was going the same way, having some kind of a heart attack. She pulled out her mobile and rang for an ambulance as we approached the house, and mentioned my brother's heart attack to them, leaving me to open the door.

Automatically, I put my hand in the left pocket of my jeans and pulled out my keyring while she talked. I knew the keyring was how to get into the house, and I knew the little hole in the door was a part of it, too. But what should I do? The string of brown wooden no-worries-beads on the keyring? The leather bookcrossing tab? the Ferryman (St Christopher) medal? the Wombat thingie? One of those funny metal things? Which one? and what to do? I had no idea.

She finished talking and grabbed my keyring off me with an exclamation of frustrated contempt. Somehow, she identified the correct thing, put it in the hole, and worked the difficult magic of getting the door open. I was suddenly terribly thirsty and I begged for water, but she'd had her instructions and told me no water, and I was to lie down. Instead of going to bed I insisted on lying down on the lounge - even ill, my bedroom is too private to bring strangers into. She settled for that.

We waited. I started feeling more normal. The paramedics arrived. They had a box with them, and taped some thingies on my torso to listen to my heart. The box said my heart was fine, but they strongly counselled me to take a ride to hospital anyway, and get properly checked out. As they carried me out I could see my daughter sitting on the front doorstep, waving goodbye to me in the back of the ambulance, and looking remarkably composed. Later I found out that she'd fed the cat, then gone around to a friend's place.

During the fairly long drive I tried to make conversation with the guy riding in the back with me, but it seemed to require a lot of concentration. I told him I had a friend who nursed at the hospital he was taking me to, and told him her name. It didn't mean anything to him. I described her. I'm pretty sure I would have said she was a tall, willowy, pale redhead (because she was), but when we got there he pointed out a short, fat, dark-skinned, dark-haired woman! This was when I started getting a clue that what was coming out of my mouth wasn't what was coming out of my mind.

I was left to wait for a long time, which is fair enough. I asked for my nursing friend by name to one of the other nurses, who checked the roster and told me she'd be starting at seven the coming morning. Good, I thought, a friendly face in amongst a sea of strangers. After a long time a doctor attended, who looked as if she was barely in high school yet. She seemed very nervous and unsure of herself, was didn't exactly inspire me with confidence. She looked at the notes written up by the paramedics and added to by the nurses, and hooked me up to a heart monitor. She refused to listen to my saying I'd had no chest pain or pain of any kind, I'd just lost connection with and control of my body and I thought it might be something else. Nope, someone else had mentioned "heart" on the notes because my teenager had mentioned in the phone call, so they weren't going to look for anything else.

Obviously my teenager is the best disgnostician that was available that night.

The machine counted my nice, strong, heralthy heartbeats for hours, during which time I begged for tea and water, and was denied both. Someone eventually gave me some ice cubes in a cup to suck on to moisten my mouth, and as soon as he wasn't looking, I swallowed them whole. What the hell - they would melt down into liquid, and I needed liquid.

Not long before dawn they decided I was perfectly fine, and told me kindly that "I was probably just a bit stressed", which I believe is Medicalese for being an attention-seeking hypochondriac. I was told I was free to go. I asked if I could stay until seven - I wanted to see my friend badly, now. They grudingly said yes, so I texted her and told her I was there. She came a few minutes before handover, came straight to the bed I was in, and gave me a hug. It was the most healing thing that had happened to me all that night, in that "place of healing".

She also told me one of her daughters was outside with a car, to make sure I got home okay. She then went to the shift handover briefing, and afterwards came back to me. She had time to walk me out to the carpark which was a mercy - the state my head was in I didn't even recognise her daughter's face, let alone the car. The daughter made sure I got home safely. I was a bit worried when there was no answer after I knocked on the door - my own daughter had gone to school and left the place locked securely, and I was still smarting from the embarrassment of being unable to use my keys. I pulled them out and tried, and this time I seemed able to work out which key to use, and what to do with it.

Hooray! I was on the mend!

But ... my usual cup of weak tea with soymilk smelled like a mechanic's workshop. Mandarin segments smelled like a fishmonger's. Urine smelled like hot roast chicken. I couldn't hold a thought in my head. I could drive perfectly well, but I couldn't navigate (and to this day, when I drive, the roads I know look perfectly familiar, but I have no idea whether a stated place is ahead of me or behind me until I see it). Something fundamental in my inside-world was very, very wrong, and still is.

A day or two later I went in to make an appointment with my doctor. Unfortunately her surgery is fairly busy, and I had to wait for a fortnight to see her. I told her everything, and she started thinking immediately in terms of a stroke or something, and wondered aloud why the hospital doctor didn't. She wouldn't have wondered if she'd seen how nervous the girl had been, and how unsure of herself - she was always going to go with whatever was in the notes. She made a phone call to a neurologist who was usually booked out for months, and managed to get me an appointment the following day. She also prescribed an anti-depressant, on the basis that this particular one tended to help people think more clearly - I was complaining that the inside of my head was like a permenant heavy fog on a familiar road: you know where the bends and all the other familiar detail are, you just can't see them at all.

The neurologist did all sorts of things: a CT scan, an MRI scan, another MRI scan slicing the brain up into much thinner slices, a holter monitor, everything she could thing of. She saw nothing. On my last two appointments with her, she also gently and kindly suggested that I might be "just a little bit stressed", too. I felt betrayed. They thought I was making it all up. I was told to come back at a certain time, but with no disgnostic or treatment suggestions offered, I figured it was a waste of time, and making and keeping appointments had since that incident become very, very difficult so I don't even try any more.

The antidepressants were hell on earth. They took me, un-depressed but mentally useless, and left me mentally useless but deeply depressed with a depression I hadn't had before. I spent most of my time in tears, or in bed. She had lent me two books, and when I went back to see her she started chatting about the books as soon as I walked in, and took a moment to notice that there were silent tears rolling down my face. She took me off that antidepressant and put me on another one. The second one made me want to kill myself. I couldn't discuss the books with her - I had read them and enjoyed them, but nothing stuck inside my head. She suggested a third antidepressant. I yelled a lot. She shut up. I had instructions on how to wean myself off them to avoid side-effects, but I ignored the instructions and simply stopped taking them immediately. I stopped wanting to kill myself, and the tears dried up, thank the gods.

My normal life went on. I stopped looking for work - I knew that I would have to ask questions twenty or thirty times before the answers stuck in my head (even simple things, like "where is the ladies' room"), and I'd get fired on my first day. My daughter had chemistry tuition from an ex of mine every Wednesday night, and afterwards we'd usually go to Terrigal for a coffee, then I'd drive him home. And every single time, week after week for months, I'd have to ask him which way to go at every corner and every roundabout. He thought I couldn't possibly be that stupid - he thought I simply hid my dislike of him behind my resistance. He finally figured out that I really needed help with navigation when I asked which way to go and he said "left" expecting I'd know it was "right", and I trusted him and turned left.

I went to my weekly meditation group, where I talked and laughed and meditated, and no one seemed to think anything was wrong. Well, whilst I was there nothing was wrong - it was only when we started going to places other than A's place or mine, and I had to find my way to strange houses, where the same thing would happen. I don't own a GPS, so I'd plan out a route using a street directory, and I'd get there. But none of those new routes are fixed in my mind - I have to use the street directory every single time I drive to those houses, even after years.

As time passed, my daughter stopped being patient with me, and started howling and screaming at me about how stupid I'd been since that night. I never listened to her, apparently. I remembered things wrong. I boiled saucepans of water dry before adding the potatoes, or I'd do the potatoes and forget the rest of the meal. I got really, really good at putting out kitchen fires. The cat, who never begged (preferring instead to sit silently by her bowl), often wouldn't get food or water unless my daughter did it. It got harder and harder to make decisions, harder and harder to make any kind of changes, harder and harder to pick up the phone to make an appointment for anything, easier and easier to find that my last appointment for something-or-other was booked in for - say - two months ago and I had let it slip by, never noticing.

My daugher left school then left home, going interstate for university. I'm willing to bet the next couple of months, when I was alone in the house, were hard for the cat - once I came upon her sitting near her dry, empty bowls, and realised with a pang that I probably hadn't fed her for two days. I started gradually cleaning out my daughter's room and setting it up as a home office for myself.

Before I had the room set up properly, a casual friend of mine moved in and probably saved my life - he certainly saved my lifestyle. His comings and goings gave structure to the week, so that I often had an approximate idea of what day it was (I still have no clue what month or year it is). I stopped starving the cat, and in the first month or two even remembered to have evening meals occasionally, with or without him. I got to know him better as a silent, watching, dark, smiling presence in my life whom I came to really, really enjoy. I established a Wednesday Routine of a regular night out at a specific place, which also helped punctuate and order my days. And time drifted on.

My housemate smokes. I used to smoke very heavily for a five-year period in the early years of this century. Around him I took it up again, and now I smoke heavier than he does, though perhaps only half as much as I used to. The Walking Chimney, me. Smoking is wonderful. Feeling stressed? Have a cigarette. Everything is better after a cigarette. I got addicted to an online game, one that tests both short-term memory and long-term memory. That's my excuse - if it forces to to learn how to remember things again, it's probably good for the chaotic world I've had inside my head since the night that took me to hospital. And I found that really, cigarettes aren't that bad! If I take a break in the game, have a cigarette, then come back, I make very many fewer mistakes in the ten minutes or so after a cigarette. I think clearer, I remember longer, I can find things in the game that usually escape me. Cigarettes are good for my brain-function. Should I give up? - I don't think so.

One day, I mentioned my brain incident to him. He looked at me curiously and said that he hadn't noticed. Really? - hadn't noticed that I was vague all the time, confused all the time? No, mate, I just thought that was you.

Well it probably is now, but it never used to be. I used to have a mind like a steel trap. I coasted through school, university and the other courses I've done based solely on the fact, back then, that if I read something once, or heard it twice, it was stuck in my head forever. Now I read and understand it, but it's gone in a matter of seconds. There is nothing, nothing I can do to nail new information into my brain.

And after all that, is where we get to what I originally wanted to blog about. I wanted to blog about loss of identity, changing identity.

I spent forty-something years classifying myself as intelligent, a thinker, someone who learned quickly, who loved learning. Now I think, but only the familiar old thoughts. Now I don't learn anything new. I've dropped out of the two courses that I've started doing since the incident, and I was enthusiastic about both of them.

In the first few weeks when I was still going to specialists, I was also sent along to some kind of psychologist, who did a battery of tests. It was a three or four hour one-on-one examination, mostly in written form. My language skills and vocabulary were high. My reasoning skills were damaged. My "memory curve" (whatever that is) was pathetic. In particular, he had a set of red-and-white blocks, and tried me to make increasingly difficult patterns with them. I remember my old self - she could have done all of them in second, and would have sneered at anyone who couldn't. The first one was okay. The next one was hard. All the other patterns I had to make were impossible. I got tearful because I was so embarrassed by my lack of ability, and hated having my embarrassment witnessed. He was just going to sit there all day until I figured them all out - we would have been sitting there a year. After an hour or two, I gathered all the blocks up into my left hand, and threw them against the wall behind him. Fortunately I am a good shot, and none of them hit him. He finally realised I had a problem. Oh, really? It took an easy kids' game to tell you that, mister, when I've been trying to tell anyone who would listen for ages?

I was my intelligence. It was all I had that I could truly call my own. Although my language skills are still with me my intelligence isn't, though. I can't learn, and I can't follow any reasoning. I can't think ahead, plan, work out strategies, can't even pick up the phone to make an appointment with a doctor. I can't lodge Centrelink forms, can't even fill them in. I can't pay rent or bills on time - I have no idea how to do these things any more. I'm constantly back-pedalling, making excuses for myself. I get looked after and reminded to do things by a flatmate who really shouldn't have to do anything more than fling me his share of the rent once a week.

All that creates chaos in my outer world, but I'm getting used to it - I have a couple of years' experience in it now. What I can't get used to, is the chaos in my inner world. I'd like to be able to hold a thought again, and follow it when it leads into new territory. I'd like to be able to drive down that foggy road in my mind, and see the fog lift, see the corners before I get to them, see the trees by the side of the road and the red earth beyond the trees. I'd like to have my incisive mind back again, be sharp and quick with my thoughts as I always have been. I'd like to live up to my brother Alan's recent description of me as "a logical person".

But I know I never will again. These days, all I can do is make peace with myself, accept that I am foggy and lost, and find what enjoyment I can in being dislocated in time, dislocated in space, and dislocated in the world.

It was agony, at first. But just so long as I don't remember who I used to be, I'm actually enjoying my life again.  Being lost is not so bad, of you don't look around at the scenery.

Saturday, February 18, 2012

Death as a Part of Life

Recently in a forum I take part in, someone raised the question of death, asking why we so "value" human life is highly. I personally value my own life because it is a blessing. Even when I'm in pain, even when I'm miserable, there is always something to look forward to.

They mentioned that we "spend inordinate amounts of time, money, training etc on keeping people alive who would not have lived so long in normal circumstances yet we put animals to sleep." Most of those people have never been consulted, those in deep dementia or people who have been in a coma or speechless since a violent accident.

They added that we send soldiers off to war to kill in the name of the social freedoms, or for political or religious freedom. I have to add to that, that they are also ordered to die, too, not just to kill. And all without asking their permission.

They also said that we cannot agree about the killing of a tiny handful of prisoners who are such dangerous people that they cannot be released again because of the reasonable expectation that they will once again destroy or end other people's lives. I replied by saying:

"I have a stepson who has spent time inside. He took a hammer to the brainstem of a person who will never walk or talk again, and who is fed through tubes. He got one year in a low security prison, working with native animals, making art, and taking trade-courses. He not only had TV and better meals that I could afford to feed him before and after the sentence, but he had air conditioning and pay-TV as well! All at the taxpayer's expense." For my stepson, his life inside gaol was significantly better and more pleasant than it was outside gaol, either before or afterwards. He talked about viewing it as a reward, as a holiday.

It was pointed out that suicide is also frowned upon by our Western society and regarded as a symptom of mental illness, whilst other societies regard it differently. I see it as an honourable reaction to impossible circumstances. I am a Westerner.

If there is an afterlife, why are we so scared of death? Why do we not regard it as a natural and logical conclusion to life? Death is a part of life. It is a graduation, an acknowledgement that you have learnt what you needed to learn, that you have finished what you needed to do. It is a pat on the back, a congratulations card in the mail, the ultimate accolade.

I think we started demonising death in Euro-based society when we came up with the <sarcasm toggled on> brilliant idea <sarcasm toggled off> of separating the generations. Old people are ugly - we cannot sear our children's eyeballs with them. Take them out of the home and out of the community generally, Put them in retirement villages first, where they mix with "their own kind", then in nursing homes. When they die, don't let the family even see the body until it is made up to look "alive" (I've never seen a corpse that ever looked alive), must less, allow people who loved the dead wash down the body and dig the hole themselves as a final act of love. Cultures that still do those things don't have a problem with psychological problems due to death and extended grieving to anywhere near our death-sanitised society's extent.

I have picked out the music I want played at my ceremony (my body is to be scavenged for any reuseable living tissues, so hopefully there won't be much to bury). It is a negro spiritual performed by a defunct Australian a-capella girl group called Blindman's Holiday, the song is "dig my grave". It's a boppy, upbeat, rejoicing type of song. The lyrics are something like

Dig my grave, so deep and so narrow,
Make my coffin so neat and so strong.
Lord, if I do-do, and I do my head
And I do-do, and I do my feet
And I do-do, do it all, whenever I die.
Oh, my little soul's gonna shine like a star
Upon Mount Calvary.

- with lots of repeats. My funeral/cremation/ceremony? A bloody big, happy party! Absolutely!

As to suicide, I am pro-life. We deserve a life. We deserve a good life. And we deserve to be in control of our lives, and the time, place and manner of our death.

About two years ago now, I had a neurological incident. I recovered quickly, although I am still damaged or mentally incapacitated by it, and I've recently seen a slight deterioration. There was, however, a slab of time on that evening when I couldn't speak, couldn't move, couldn't even hear. I couldn't so much as move my eyeballs in their sockets or blink my eyes. If I hadn't spontaneously recovered, I could have spent the rest of my life in that state, locked in a body, thinking like me, but utterly unable to respond to anything.

Now, prior to that incident, I had believed I'd never want to live like that. I believed I'd want the plug pulled. But when it actually happened, if only for a short time, an unholy joy crept over me. I could see and I could think, but no one knew. I'd never be expected to cook or clean or earn money or pay a bill ever again. I wouldn't even have to wipe my own arse ever again! And at that moment, being "locked in my body" suddenly seemed like the greatest freedom that could possibly happen to anyone.

But then my hearing came back, and after it, movement. Immediately afterwards, I thought about that revelation, the ultimate freedom of being locked in an unresponsive body. Yeah, I would love it. Total abdication of responsibility, coupled with time to think - bliss! But what happens after a few weeks or months or even years, when I get bored? How can I then indicate to someone that I've changed my mind, I want the ventilator switched off? Answer: I can't. Which is why I'm a not-for-rescusitation patient, every time. And now that I don't have any economically dependent children, I really don't have to live for anybody else's benefit.

Death is not an issue for me at all. That nasty bit before it, where I could be horribly sick or in agony, definitely is. So yup, bring on the pain relief, bring on the drugs. And the last person out of the room gets to turn off the ventilator, thanks.