August 2009 Archives

Sometimes the only way to gauge your psychic state is to march right into the jaws of death or, to tone this metaphor down slightly, the jaws of inconvenience.  Public conveniences a.k.a., toilets, are a fact of British life.  Inconvenience would otherwise prevail.  And the source of British inconvenience is one I share.  Tea.  It is a national addiction and one easily acquired by the frequent visitor and past resident.  And the consequences of tea could not be clearer and more civic, to wit, the UK's public conveniences.  If you drink tea, you have to pee.  There is no way around it, and if you drink tea and are the possessor of a quadriplegic bladder, capacity scant, you will be inconvenienced all the more frequently...and one can pound the point into the ground, or just leave it at that.  There are no obscure principles here.  Archimedes' grasp of liquids suffices to this day.  The latter cannot be compressed.  And they displace in a predictable, utterly formulaic way.

Of course, no one wants to walk into the jaws of inconvenience.  But for the typical quadriplegic, misadventure is always just around the corner.  Including the urinary corner.  Try being sensible.  Drink your cup of tea at 7:30 AM, then cease liquid intake.  By all means have breakfast, a solid and dry breakfast.  By 11:30 AM your bladder will feel like the Gobi Desert.  A good sign, actually.  It's time to get on the exercycle.  

Of course, it has been time for a long time.  That time stretched and redefined itself during the two-week trip to Britain, according to a complicated formula that factors the logarithmic impact of massive fry-up breakfasts, with the usual panorama of eggs and sausages stretching to the horizon.  Nevermind.  It's 11:30 AM, Lorna has gotten you hooked into the exercycle, and you're off.  Thing is, you were a little more off than you had realized.  Getting back in shape takes a little longer with each advancing year, doesn't it?  And you can pedal your butt off all you want, but general stamina, the solar-plexus draining effects of jetlag and the persistent symptoms of wife loss...well, it doesn't make things go faster.  

You can listen to news podcasts on the health care crisis just to get your anger up and adrenaline pumping, but it's not enough.  Only enough is enough.  And you used to do five virtual miles on the exercycle, dropping your right foot in its plastic brace proudly to the ground when the 5.00 digital readout appeared.  And dammit, there's no stopping you.  There probably should be someone.  Such as a cardiologist.  But you're tired of being stopped by your own nervous system, so you pedal on, cardiovascular conditions be damned.

It's around 4.00 that a quick probe of the bladder reveals negative conditions.  Still, there's the sense that it has taken a long, long time to get this far, and the rate of urinary production is just slow enough to get you off this exercise machine in reasonably dry condition.  You've only got 1.00 to go.  So, of course, you go for it.  And what you're going for is truly broke.  Because with feeling diminished, the true state of the bladder is a matter of some vagueness.  And it's only when the 5.00 appears and you knock the foot free of its pedal, that the reality dawns.

A friend has asked why I don't just keep a little bottle beside the exercycle.  Because, I explained, I'm sitting down.  But this doesn't really make sense because I stand up to get off the thing.  I really wish I had a pot to piss in right now.  But I don't.  So I do what I did just a few days earlier, unzipping and aiming at the carport floor.  It's disgusting.  But peeing on myself is even more so.  The problem is that my iPod, hanging from the exercycle handlebars, is somehow in the line of fire.  One of the earpieces gets wet.  I stare at this in disbelief.  How is such a thing possible?  And what do I do now?  I can't even recall which earpiece I've gotten wet.  Should I rinse off both?  

Strangely absent in all this is the usual self-recrimination.  I've had a small accident and avoided a larger one.  And this, believe me, it's a definite sign that four months after watching my wife die...things are getting better.

It all begins with a blank page, or a blank screen, but there's nothing more intimidating than the blank look...the one I give myself on a morning like today's.  You can't hurry love, the old song goes.  No sense in rushing, the old saying goes.  And time is neither compressible nor expandable nor malleable.  But you can fuck with it.  You can schlep on board a flight from Europe with your bags full of English cheese and your body full of circadian rhythm and markedly screw up both along the way.  It's too hot in California for Somerset cheddar, and the substance tells you this by an immediate disassociation.  The butterfat migrates towards its home in the Cheddar Gorge, while the solids stay in place, an internal battle raging, and you the prospective cheese eater beginning to lose interest.  As for the circadian rhythm, well, it's gone the way of the rhythm section or the rhythm method, sagging into your guts, draining you...and of what, no one can say.  Where is Circadia anyway?

You can't find it.  And what seems most necessary is certainty and regularity.  Which is why, so-called jetlag being what it is, on night number two when fatigue drops through your abdominal cavity like an elevator, something sprightly and insistent surges upward.  The result is a highly fatigued state of bug eyed consciousness that arrives about three in the morning.  It enters your life like a Jehovah's Witness.  You don't recall opening the door for it, but there it is drinking your drinks and sitting in your sitting room and lounging in your lounge chair.  And it's not going anywhere.  It's going to take its time.  And it's going to take your time.  And the whole thing wouldn't be any sort of problem if you just realized that time cannot be taken.

Instead, you've taken something along the lines of Sominex, one of those over-the-counter sleep tablets that not having the imprimatur of a Merck, somehow seem more low-key.  Drugs, of course, have neither a high nor a low key.  But in Britain, one of them, aspirin, comes attractively packaged in small travel-size packets.  Just don't try to buy more than two.  Three is over the limit, any pharmacist will tell you.  Why?  The occasional suicidal Briton takes an overdose of aspirin.  Which is like trying to drown yourself in the lavatory sink of a 747 and eminently deserving of a Darwin Award.

The problem is that after a Sominex night, which does the approximate the prescribed eight hours, you don't quite wake up.  Your eyes open, the torso straightens to vertical, but a mustiness lies upon the psychic land.  Lorna goes about the morning rituals and offers to strap me into the rowing machine, but the very thought sends me into a swoon.  The solar plexus is drained.  I ask her to come back in a couple of hours.  She does, and by then I'm barely out of the fog.

Some will insist that the problem lies in the choice of drug.  One needs a real professional, prescription-type medication, hangover free and guaranteed to give you a peaceful night.  Thing is, I have some of these sleeping pills.  True, there is no hangover and there's a pleasant zonking out which, don't get me wrong, has its place...such as a berth aboard an overnight train for Glasgow, where the prescription stuff did its job quite well.  But under normal circumstances, when not being jostled and tossed in a Scottish sleeping compartment, there's an important thing missing.  No dreams.  Dreamless sleep.  Which may be okay now and then, but not on a regular basis.  I believe in the Land of Nod.  It really exists, is its own country, the borders expanding on a nightly basis.  Dreams heal and inform us.  I'm not in favor of drugging them.  At least not very often.

So, was it worth it?  The Sominex night, I mean.  What was I trying to accomplish?  I was trying to bypass or short-circuit the jetlag experience.  Which means what?  It means avoiding the waking up in the middle of the night, mind unaccountably buzzing, the sense that things are out of control.  Which they are.  So why not wake up in the middle of the night?  Underneath it all, my circadian rhythm hasn't changed.  Same tempo, same beat.  And why do we need this druggy illusion of control?

Drugs, single-malt whiskey included, can help us kick up our heels, release those Dionysian energies.  The rest of the time they can help prolong life...like Marlou's...regulate what the body can't.  But to me, even when absolutely necessary, they are second rate.  If you hang in there, life will bring something better.  It's pretty rough along the way.  But next time, I'm staring at the ceiling.

It's a strange night, my first back in California.  I awaken repeatedly, each time in a state of anxiety, with the vague feeling of being smothered.  And yet I return to sleep.  So this is it, the current state of things in the deathbed.  I have returned, and there is no escaping this, the work of life, and anxiety is what has to be.  And I'm glad I have been away.  It came to me in the cab heading out to Heathrow far too early Saturday morning, how a trip, too short, too fast, too hectic...can still be so life-changing.  And there was Elliot at the airport, helping me deal with Virgin Atlantic and a little apprehensive about the journey to Terminal 4 and all the confusing changes in Detroit, Minneapolis and God knows where else, and yet doing it.  There's a confidence building element in travel.  

And on this occasion, it applied equally.  The trip, for all its rigors, reminded me that life's options are still open.  I need more help, but help is there.  And I can still try things and make my way through the world.  Two weeks away was less of a distraction than an affirmation.  And now I'm back in the bedroom, our bedroom, and going through the panicky and disturbing and necessary work of bringing mine and ours into some different perspective.

Last night, after two weeks of berating myself for the dropping, forgetting and mismanagement of endless travel details, back in my apartment it came to me, a rather pleasant reality.  How, running on little sleep and functioning at 3 AM London time, how much I really had it together.  How at SFO I had stashed away my UK mobile phone, fired up my American one and gotten ahold of Lorna who was waiting for me when the SuperShuttle van pulled into my driveway.  How she got me unpacked and more or less back to normal life in less than an hour.  And after she was gone, I kept getting things in order myself.  

A quart of milk was waiting in the freezer, and I actually remembered to put the thing to thaw overnight for my morning tea.  Moving through the phone messages...a couple of people to see in the first few days back...and, no, the mail could wait.  The fine motor activity of opening envelopes and extracting contents Lorna could do the following day.  With wheelchair tires badly worn down under cobblestone battering, I made a note to phone the repair guy on Monday.  Quadriplegic life demands alertness of a high order, and I was up to it.  More important, quadriplegic life demands compassion.  It's often hard for me to care for and about my wounded self, but not impossible.  And such was the thread running through all the organizing and self management of the weary traveler's affairs, that I'm worth caring for, taking good care of...with or without Marlou.

And what of today?  Well, there's the mail.  Tomatoes and crookneck squash to be picked.  An important management decision regarding the latter, for the usual mildew is blotching up the leaves.  Exercise.  Seeing friends.  Life gets built out of many small things.  It seems to get re-built the same way.  And what are these disturbing moments of panic in the middle of the night when I'm being smothered, alone and helpless?  Wherever they are, last night my dreams kept taking me back to Kings Cross Station.  As though there were something comforting in grimy rail Victoriana.  Which there is.  On the trip, I kept pointing out to Elliot how big a rail system Britain still had, despite the cuts.  Ten vast railway stations in the capital alone.  The last of which marked the end of our Scotland trip, Kings Cross.  Maybe it was because even without a map I guided us out of the station down Gray's Inn Road to the University of London rooms.  The guys pulled the bags, Jake corrected me when I made a wrong turn at Corum's Fields and Elliot advised me not to roll in the path of a hurtling bus.  Teamwork.  Even when I'm in the midst of panicky smothering moments at night...I can get back to sleep, which has to do with a secret residing at Kings Cross, and I am not alone.

Roberto Alagna was sharing his 'Desert Island Disks' on Radio 4 while I went about my morning hour in the bathroom, and when I wasn't thinking about this wife's body, I was thinking, what a soulful guy. Big tenor star. Gets to sleep with Angela Georgiu, and he's still modest. He's also, it turns out, from quite a poor background. And for what it's worth Angela is his third wife. Why I should care about this while I'm trying to get the soap out of various crevices? Well this has to do with my newfound status.

Alagna described how his second wife started getting headaches, began avoiding the sun and dropped in to see her doctor...who was very cruel, the tenor said. They were in Paris, not that it matters, and their doctor of many years was not kind...and I liked this part of the interview. It was only a snatch from a lighthearted show about what's-your-favorite-music, and in a couple of artless moments, Alagna said how it felt. For all his fame, he has a simple innocence about his expression. The doctor was cruel. Alagna's wife had two months to live. And that was all of the radio exchange, and on to the next disk, and I can't even recall what his favorites were, except one bit from Eugene Onegin. I just heard him. He lost a wife. He hasn't forgotten it. Yes, he has a new one, and they're quite the international opera duo. And still he hasn't forgotten.

And you can have a new life, and not forget the old one, and it's all okay. On this, my last day in London, damned if I'm rolling all over hill and dale in search of touristic experience. I'm sticking to Bloomsbury. I'm sticking to Brunswick Square. I might venture into the gardens and stare at others venturing into benches in the gardens. I might have a cup of tea. Make that two. But what I really plan to make is the Virgin Airways flight to San Francisco. It's time. I'm ready. It's time.

Only because it's the schedule, the plan. When life is directionless, you take direction where you can find it. The customary placement of one foot in front of the other provides a welcome structure. Because in the end it does not seem to matter where I am, I might as well be where the airline tells me. Although there are limits. Seat #35E, for example, will not do. I would yell at these fucking 'virgins' and their silly airline, except that we are currently communicating entirely by website. We will have words tomorrow, live ones. And if this substitutes for a life, the occasional shoving match with airline personnel, so be it. I am not accustomed to being aimless. But like it or not, I have not always been in a position to aim. Someone took aim at my spinal cord, fired...and rendered me aimless for many years. This is another one of those times. And this time, at least I'm traveling. The purpose and even the worth of the trips may be unclear...but there is nothing to do but let them unfold.

In late morning Elliot, Marlou's nephew, set out with my friend Evelyn for Portobello Road, the famed antique market, in Notting Hill Gate. I encouraged him to take the tube back. Elliot wasn't very keen on this, and I didn't push the concept too hard. The entire state of Iowa has a population that is about one quarter of greater London, and his exposure to subways and pushing, rushing humanity is limited. And what I've seen in Elliot is that fate limits everyone. He is more emotionally mature than I was at his age, and I have told him so. We learn different things in different ways, some remarkably late. More important, the details don't matter. He is open, taking in a foreign land without harsh judgments. Which cannot always be said for the Brits themselves.

The British newspapers and the BBC offer a daily education in...I don't know...call it reality? Take the release of the Lockerbie bomber. Many people in Britain, educated people, people not given to conspiracy theories, never believed the Crown had much of a case against the Libyan. Oil and Middle East politics tilted things away from more plausible suspects closer to Saudi Arabia. Whatever. People here never bought the Libyan story, and whether they are right or wrong, this is where public sentiment stands in the UK...and does this ever turn up in American news coverage, outside of the New York Times?

As for the American health care debate, which is actually a juvenile, anarchic screaming match out of some daytime TV show, well, it is interesting to see the UK pull together on this one. Brits are fond of complaining about everything. The railways are falling apart...youth unemployment is at record highs...taxes are killing the middle class...and housing prices are stagnating...while EU regulations make it hard to know where a pound of sausages originates. Naturally, they complain about the National Health Service. But not now. For a refreshing moment, everyone is proud to be British and have a longer life expectancy than Americans while paying approximately half as much for health in terms of gross national product. There are almost twice as many intensive care beds available per Briton, compared to the US. And your chances of surviving a heart attack in Britain are substantially higher than in America. Britons love a joke, and they are endlessly self-deprecating. But they don't like being insulted. At their core, they have a better capacity than Americans for pulling together. Right wing drivel from the US will have, I predict, an overall good effect on the NHS. But that's me. Got to go print my boarding pass.

I decide about 6:30 PM to roll out of my room at the University of London residence halls...the same one I occupied in June...for a quick machiatto across the street. Naturally, I head for Apostrophe's outpost in Brunswick Square, a UK fast-coffee chain. Ordering a drink is so easy...single or double...but paying for it drives me half out of my mind. For the purposes of this very quick caffeine stop, my bum bag, a.k.a., fanny pack, is resting on my lap. This makes it easier than usual to unzip the thing and rummage around for coins. But I can't find them. Only a couple of hours ago, Eliot, Jake and I rolled off the fast train from Edinburgh, so I am heavily laden with passport, US and UK mobile phones, and now I am pulling all of these out of the bag, conscious that the counter person has just presented me with the amount due, £1.40, and time is passing, and only a very disabled person who is totally and obviously out of it, would interrupt the urban rhythm in such a stupid way.... And what is so maddening is that only a few hours ago aboard that express for Kings Cross, I gave a girl pushing the tea trolley a £5 note and got plenty of change, and now I cannot find any of that change, the coins having drifted into some dark corner of the pouch. I can hear the change when I shake the thing, but I cannot feel. And with my neurology, discerning pound coins from 20-pence coins or from aardvarks is impossible. Well, maybe a small aardvark. Finally, I spot a £2 coin, hand it to the barista, and roll out to the terrace to drink my coffee in the London evening.

 

Everything is so hard, or everything is so infuriating, that I sail into negative emotional territory and quickly get stranded in the shallows. There is no logical thinking through of the coin-management problem. A small purse or something, for example. In fact, I do not seem to care. Everything is hard, I expect this, and I get angry at myself, all day long. Of course, there are respites. If there weren't, I would probably get run over by a cab.

 

This afternoon, Jake and Elliot having helped me get unpacked and situated in my dorm-home-away-from-home, I rotated my feet up on the bed...an infuriating maneuver, one must point out, the bed being pointed the wrong way and forcing me to lift bad leg first, not the kosher quadriplegic way...but despite berating myself for being a bumbling idiot, the legs did get up on the bed, and I had a sort of nap. Interrupted by a cousin's phone call, but never mind. There was a precious 30 minutes of reflection.

 

And into such voids, comes the unfinished business of Marlou's death. Particularly, her last night on earth. When she considered then rejected terminal sedation, a nurse took her through a fantasy walk of Oahu's Windward Coast. And the same nurse talked to me in the living room beforehand, explaining in about 30 seconds that Marlou's anger could be masking fear. And then there was the bedside musing about the warm sands and the rippling water and how the sun felt on one's hair. And that may have been when Marlou let go. She woke up, or did not wake up, the following morning in a coma. With death in the afternoon.

 

And why I am fitting these pieces together is anyone's guess. It pains me to imagine her fear, for I can imagine my own. It pains me to acknowledge my helplessness. And that was the end. And now life goes on, or a semblance, and at least there is motion.

 

I wasn't quite prepared for the beauty of the rail journey south. National Rail's east coast line rolls right along the North Sea for mile after mile, hundred-foot cliffs tumbling off to the side, and nothing out there but an imaginary Holland...or maybe southern Denmark. There are even a few forests, a Scottish village or two, then Northern England, with a look at the great rivers, the Tyne and the Tee. While I work my way through a novel, and on one occasion roll into the disabled toilet.

 

Even with abundant grab bars, peeing is a terrifying experience. The train is going more than 100 mph, and even when it isn't jerking, the sheer centrifugal force makes a mockery of the peeing process. In these moments I abandon my mad plan to, with the help of Jake and Elliot, make my way down the perilous aisles on foot to the dining car. This is not going to happen, and that knowledge saddens me. I am getting older, everything is getting harder, walls closing in, possibilities closed off.

 

Except that later that afternoon, crutching down the hallway of the residence hall with Jake and Elliot standing by, I get not only my day's modest ration of exercise, but do a little something for my balance. I have hardly walked anywhere on this trip. My physiotherapist keeps telling me to get up on my feet, grab the crutch and use it before I lose it. And the wisdom of this becomes apparent in the hallway. More walking would help. There is still something I can do to make things better. All hope is not lost.

 

The Guardian I picked up in Edinburgh had a long feature about the previous evening's Faust. Direct from Bucharest, with a cast of more than 100, a vast production that fills an enormous stage and spills out into a large area behind the stage.... But I am getting ahead of things. With Goethe's text translated into Romanian with English supertitles, the play had a narrative semblance to the late 18th century original. But that was all. Everything about the production was designed to disturb. And the question lingering at evening's end is why? Or why not?

 

Isn't Faust at the heart of the Western experience? What is the value of a life? Not a biological life, but a well-lived life? Or a soul? What does it matter if we are true or untrue to our inner destiny? Do we have an inner destiny? Is Faust really a teacher, an authentic one, as the tale opens? What knowledge does he hunger for so desperately that he is willing to burn in hell? These are Goethe's questions, and in the hands of a mad Romanian director some of them intensify and some simply get lost.

 

The evening is so high in production value, the stage epic so affecting, the glimpse of hell that gets the audience up off its feet and walking through an opening in the stage that leads to a vast chamber behind where an utterly perverted Walpurgisnacht is underway, complete with devil-women having sex with pigs, the death of a child born of a pedophilic tryst, even more sex projected on the side of a rhinoceros...all this coupled with dancing pigs and devils moving to the beat of a sort of Romanian Philip Glass score and accompanied by a fiery roman candle waterfall...well, it's hard to say what it adds or subtracts from the Goethe experience. But there are definite additions. The hermaphrodite Mephistopheles with breasts bared and codpiece jutting presents an utterly convincing force of evil, deception and trickery.

 

Faust himself, a great star of the Romanian theater, guides us across the stage with every flick of his eyebrow. In the end, it may be the deathly makeup that is most disturbing, leads us deepest into hell. It's the way out that doesn't work so well. In this production Margarita, whom Faust deeply loves in Goethe and leads him toward salvation...well, she is something of an add-on, a plot device to steer the thing in another direction. And what more can one say? Unforgettable. The sort of thing Festival audiences expect, and get, in Edinburgh. And there it was the next day in the Guardian.

 

And here I was having my espresso in Brunswick Square, this summer evening warm but with a pleasant breeze, and even after fumbling for the change, enjoying a moment of peace. I stared into the middle distance, imagining what it would be like to live here. For a few minutes it felt good. For a few minutes life felt good.

 

This time is a difficult one. And for reasons that are not entirely clear I am moving. I set things up this way. And in a few days I will be back in Menlo Park sleeping in the deathbed. Which is also good. I need to return to the scene of the crime, as it were. And I need to go away again, and I will. And then I return. Go away again. And return again.

I carefully place one half of the sandwich in my mouth, the other half on top of the wrapper it came in...and that provides sufficient sail area for a gust of Scottish wind to blow the entire thing off the table and onto the well trodden floor of the Edinburgh Book Festival. I stare at the sandwich in disbelief. This, and things like it, cannot be happening to me. Yet they are, constantly, all the time. My wheelchair runs into the small bed in my room at Edinburgh University's halls of residence. I pee on my left foot trying to maneuver the Scottish capital's wheelchair-accessible toilets...and thanks to the EU directive, there are a surprising numbers of them now. And why it's always the left shoe, and the daily misadventures of dropping things and aiming badly, these matters are inexplicable and consistently galling and humiliating, and I'm fighting my way through this trip with a certain background level of grief and depression.  But I'm in the sandwich moment now, and all I care about is the loss of lunch.

 

Here, in the crush of writers, readers, publishers, agents and hangers on, what is on the floor of the Book Festival coffee bar does not bear consideration. Whatever was on the floor is now embedded in the sandwich. And I am hungry. I am also debased in ways that make me want to avoid further debasement, particularly in public. Do I eat the sandwich? What literary types are likely to see this happen? In an inattentive moment, an hour earlier, I almost ran my wheelchair footrests into the shins of Margaret Drabble, a famed British novelist. I survived that, and now there is the sandwich on the floor that must be dealt with.

 

Fortunately, I am in the company of Marlou's nephew Elliot. Eat it, he assures me, and don't worry about it. Things happen like this at festivals, he adds. Being a twentysomething, he is a veteran of music festivals, and to him a crowd is a crowd, and a food stand is a food stand, and all the events and Brownian motion that surround them...well, he has seen it all before. I eat the sandwich. No one is watching, of course. No one cares, of course, and it may be that the latter is most disconcerting. I am on my own. Not really, not with one Londoner and one sturdy Midwestern American. But I can feel on my own if I want to, despite the distractions of the world's biggest arts festival.

 

It is impossible to tell if my despairing mood colors the experience, or if in attending the Edinburgh Festival, I have almost bitten off more than I can chew...in the musculoskeletal sense. Still, something about this strange trip has worked extremely well. Both young men are considerate. They know I'm in a sad state and keep encouraging me. And they have their own worries. Elliot has never been away from home this long before, and Jake's tenure at the BBC having lapsed, faces a horrible job market. Everyone keeps trying. The Book Festival is just one tiny subset of this massive arts mania that engulfs Edinburgh during its Arts Festival. It occupies Charlotte Square, making it attractively small and contained. Great writers come and go at a dizzying pace. Most of the events are sold out, but one can pick up a return ticket here and there.

 

Elliot and I listened to the economics editors of the Guardian and of the Daily Mail, politically opposite newspapers, discuss the world economic crisis. They were in remarkable and startling agreement. Things are grim, will get worse and there's no real solution, and no real end, in sight. It's enough to make a man wolf down his sandwich, Edinburgh contaminants and all.

 

Getting around this city of cobblestones and hills doubtless would have posed an enjoyable challenge at another point in life. But I'm not at that point. I'm at a point when every spine-jarring cobblestone irritates me more than can be described. Everything irritates me, if I'm honest with myself. Fortunately, Edinburgh is full of cabs. And again, with a nod to the EU directive, those cabs are equipped with wheelchair ramps. So I have abandoned much overland getting about in favor of taxis. I have got two young guys to steer me in and out of them. It's all working very well.

 

And despite my gloom and furor, throwing taxi money at the problem gives me just enough energy to do what needs to be done. And what needs to be done involves going all over this city with its seven hills and stone pavements in search of performing arts events. Every theater is booked to the gills. And every square, park, court and open area either has a tent pitched on it for performances or an exhibition. Famous performers turn up in tiny venues. Jake wanted to see a standup comedian, Stewart Lee, who is frequently on BBC TV. So, what the hell? The basement venue was laughably inaccessible. Carry my 200 pound wheelchair down eight stone steps? The club was quite willing to do this. Instead, we chained the wheelchair to a wrought iron fence with a bike lock, courtesy of the stage manager. The two guys helped me down the steps and into a chair. I laughed intermittently during the show, the whole experience helped along by a small single malt. Which, of course, had me hobbling further underground in search of the tiny club's toilet. Wheelchair-accessible, believe it or not, even though the club clearly wasn't. Never mind, for I got there in time, saving myself from further humiliation.

 

And the next day, damned if all three of us weren't in Edinburgh's magnificent Usher Hall, home of the city's symphony. The orchestra was a French one, and the program mostly Mendelssohn. And Jake and Elliott gave it a go, just as I had done with their comedy club. And then we went on to the next day's Romanian production of Faust. Which deserves an entirely separate blog entry, and may or may not get one, depending on...where the sandwich falls.

 

Just as I was leaving, my neighbor Buffie dropped by for a chat, saw my rental DVDs arrayed in their Netflix glory, and asked if she could borrow a few. Why not? I would be gone for a couple of weeks. And some of these DVDs have been sitting there for a couple of months. Eugene Onegin, for example. Who wants to watch opera alone? Buffie, apparently, for she took that one and a number of others. And the next thing I knew, SuperShuttle was whizzing me to the airport and I was thinking that, what the heck, she knows where the keys are, why not use my 50-inch TV? Or would that be wise? I mean, surely it would be better if I had put Buffie through the paces with the Blu-Ray and the Panasonic TV and the interconnected stereo...one separate control inefficiently used for each. After all, what if Buffie messed up in some way, the DVD getting jammed in the player, not being able to turn the thing off, everything exploding in a toxic puff?

So what? Things are meant to be used. Moreover, they are meant to be shared. And if they break, they break. Which is why I rang Buffie from the airport to say that while I am in England, and your son is with his father, please enjoy my home electronics. And though she declined, I still felt good because...even when I feel alone in the world, the world is not a lone place.

And then all the improbabilities of airline mileage forged into business class. A private lounge with a tomb-like silence. A seat that tilted into a position that bordered on the fully reclining, and once aloft felt like going to London on a water slide. After worrying and worrying and worrying...checking every 15 minutes to make sure that the passport in my pocket was still the passport in my pocket...things were on a roll. Or on a wing. And a prayer. And there's nothing wrong with the latter.

How else to explain the strange morning dream at the Novotel in London's Euston Road? I was in my birthplace, the desert home where my parents tore each other apart and shredded their kids in the process. A familiar scene of the dry town plane, the San Jacinto Mountains in the background. But in the dream, a rain had come. In fact, a flood. The town had been flash flooded in the best desert tradition. And now standing water, temporary lakes had covered over parts of the town. The effect was refreshing. A force fluid, feminine and nurturing, had transformed everything. Parts of the town were underwater, and all was good.

All was good, because in addition to dreaming, I was sleeping. Bad thing trying to get a good night's rest in the deathbed back in California. A better thing to be in London waking up in a French hotel chain and then just before midnight rumbling out of town for parts north. Caledonian parts north. At Euston Station, I couldn't quite believe I had it right. I had made the reservation in May, after all, a period of my life even more demented than the current one. And naturally I couldn't quite find the reservation code, and a clerk was advising me to ring a special number for fools who didn't have their ScotRail affairs in order. But suddenly there it was. Elliot, Marlou's Iowa nephew who had appeared at London airport precisely when and where he was expected, had pulled the magic number out of my manila file. And this combined with a credit card inserted into a ScotRail kiosk had a marvelous effect. Twenty-four tickets printed out their plastic little hearts, piling up like dead leaves inside the machine. And with my cousin's son Jake in tow, the three of us boarded the sleeper train for Glasgow.

The latter was a disabled-access retrofit, an old British sleeping car modified to provide space for one cripple, one friend and one wheelchair. The interior sections had to be juggled and worked under and over each other so that a shelf held the disabled person's suitcase right over the bed, the legs sliding under, while the leg brace came off the cripple and slipped into a narrow vertical drawer, normal purpose unknown. The companion, Elliot in this case, took the upper berth, leaving only the wheelchair to be accommodated. There was barely room for it. Only by backing in and making a fancy turn, could the door shut. A long night of railway roaring and shunting and roaring again and jerking to to a stop, only to roar back into the Scottish night. Until it wasn't night, and I was somehow awake and knowing it was 5:45 AM and time to get up and on with things.

And getting on I was. Normally, these are such frustrating moments for me. I curse myself for the stiffening joints or tightening of tendons that make maneuvering in cramped spaces virtually impossible. And ScotRail's disabled sleeper was among the worst of the worst. With my legs pinned under the suitcase shelf, no room to drop the feet to the floor and safely stand, what was there to do but wake Elliot and get assistance? Well, there was this. Spasming my paralyzed leg into a grip-friendly flexion, grabbing under the knee with my one hand, dropping the foot to the carpet...only to have it wedge against a wheel. And yet there was a grab bar and enough leverage to get the torso up and staring at the impossibility of movement.

But there was battery-powered movement. Turning on the chair, inching it forward, working my foot around one side. Then maneuvering the wheelchair back to make room around the front. And the danger every second of running over my own foot in the ScotRail darkness. And yet it didn't happen. Before long I was seated in the chair, pressing the electric door lock and heading out for the toilet. Scottish sunlight burst through the hallway glass. And then in another miracle Elliot and Jacob and I were trundling our way through Scotland's tough working-class capital. I muttered that Glasgow looked nicer than expected. Jake told me that we wouldn't experience the real place until we'd been stabbed. Which was enough to get us over to Queen Street Station and within minutes rolling along the valley of the River Clyde, then up some loch or other to another loch or other, Scotland's West Highlands growing greener with each mile, Ben Nevis looming above us, all of it looking remarkably wild for Britain. And on and on to the seaside town of Oban, where we stalled long enough to get Elliot some new shoes and me a new lease on life. I could tell the lease had been signed as the Inner Hebrides made way for each other, channels spreading like fingers, the big car ferry slowing for the Isle of Mull.

A low-sleep and high-concentration journey that might have begun in London or possibly California and was now ending here at a dock. I saw passengers rushing down a stairway. Panic. I was a disabled person in a wheelchair stuck on the wrong deck of a ferry that was letting off passengers one deck below. I was always in the wrong place. There was never enough time to get to the right place. And if I stayed here on the wrong deck, this enormous ship was going to set sail for the next Hebridean island of Iona...leaving Elliot and Jake and our hotel reservation behind. Which sent me scurrying in search of a lift. Which works differently on a ferry, and I was trying to make sense of the thing when one of the ferry staff approached me, all nautical in his Navy-officer's regalia.

Was I getting out of here? Yes. Was I hiring a car? No. And this set me off, because everyone assumes you are either driving or plan to be driving. Even quadriplegics, believed to be magically capable of wandering up to any Hertz counter, waving a credit card about and getting one's hands on a nice magenta low-mileage Sienna van with a wheelchair ramp and disabled controls fitted and adjusted to the neuromuscular specifications of the driver, cup holder mounted on the left. No, I did not want a car. Where are you getting off in Mull? I eyed the faux officer. The dock, I told him. I mean, he asked, how are you departing the ship? Down the gangway, I told him. No, he persevered, where do you wish to be when you alight? On the Isle of Mull, I said. No, but where? The landmass, I replied. The man was undaunted. Sir, he said, the gangway is being moved into place at this level. Hire cars are on the level below.

Sure enough, it was happening, the mechanical dock moving into place and all the other passengers making ready to depart from the same door they had used to enter. Lots of self-control, the ferry guy and me. No one overtly yelling. Everything working out. Everything quite exhausting.

Jake and Elliot and I made our way down the dock and along a half-mile of road to the Isle of Mull Hotel. It was there, right where MapQuest said it would be. Naturally, the disabled room wasn't. Sorry, said the receptionist, we do have a room, but it's down 16 stairs. Hadn't Expedia had an exchange with the hotel about wheelchair access? Well, the receptionist said, there were just five words....

And if one of the words was 'wheelchair' that would be enough, and I was at my wit's end, and while the Fawlty Towers staff went about arranging rooms, Jake recommended the universal Scottish antidote. A wee dram. I'm not a drinker, but this was the time to develop my skills. The Scotch felt good, smoky and doubtless peaty, and according to the promo on the bar, with hints of rosemary. The world has become one place. Even fucking single malt whiskey has to have 'hints.'

Travel with these two younger men is working out well. They can talk to each other about contemporary matters of music and girls and twentysomething life. And they can help. The hotel had that most surprising of things on bleak and rainy Mull: an indoor swimming pool. It was shallow enough, but I am at an age and perhaps a state of mind in which I appreciate having two able-bodied guys to help me in the water and keep an eye on things. Jake had forgotten his swimming suit, but he decided his boxer shorts would do. I couldn't agree more. I was past the point of caring. My wheelchair could not even make it in my hotel bathroom.

Later, the dining room proved to be full. Waiting 45 minutes for a table didn't sound too appealing, so we returned to the scene of the single-malt crime, eating in the bar. Through the window, a storm swept down the channels of the Inner Hebrides, lashing the coast with rain. It is all so unexpected, the rounded valleys and shorn rock peaks that comprise the Highlands. The green of it, water tumbling through every gully, the small harbors with fishing boats, the long inlets of Atlantic water, a ruined castle often perched at either end of the loch. Doubtless a brutal place in winter, and not a particularly easy place even in summer. But beautiful in its savage way. And remarkably empty of people, quite a miracle in crowded Britain. And somehow in the watering and green sloping openness, the dark and light of Atlantic weather always adrifting across the spaces, is some revelation about living and dying. For I have been dreaming about Marlou here. She has lost her hair in the chemotherapy stage of things, yet she looks vibrant and sexy in these dreams. Somehow, the mark of life is upon her, but life is very much within her. As though she has been through and beyond death. And what is true of the dead might someday be true for the living.

It's not a usual for me to wake up about 4 AM, panicky and agitated.  So, I did what I do.  I rolled over and grabbed the three herbal sleeping pills already positioned on my bedside table.  Shouldn't take long.  This stuff, largely dependent on the pharmaceutical action of chamomile, works mildly.  Of course, that's generally all I need.  A little chamomile, a little slow breathing, steady lung action, and the night terrors subside and sleep returns.  There is often a nightmare during this unpleasant phase of sleep and non-sleep.  But not to worry.  At least I return to slumber.

But not this night.  No discernible effect from the herbal pills.  Just anxiety and anxiety and anxiety.  For which there is a simple remedy.  Sit up, perch on the edge of the bed.  And take it from there.  Bed pounding is often a wise outlet in the wee hours.  So, I dropped my legs to the carpet, pulled on my abdominals...and fell backward.  I pulled again, feeling strangely weak.  More than weak, I also felt a bit woozy, as though if I did make it to the edge of the bed in a sedentary posture, the whole thing might keep right on going, me rolling on the carpet.  

For the first time I felt more than the night anxiety.  I felt real fear, fear for my safety.  Another try.  Another wavering at the bed's edge, then falling backwards.  I had no option, for I knew I had to get into the sedentary.  Finally, I gave things a last pull, yanking hard on abdominals, pulling me into the vertical.  When a new reality took over.  Something feverish.  I began making retching sounds, turning to the only available vomitorium, the bedside urinals.  But nothing happened.  Still, there was this queasiness down below.  A sense that all was not right abdominally.  The wheelchair.  I wasn't clear I could make it there.  I was feeling very feeble, unsure of my balance.  But once you're up and wobbling, you are up...and now it was down, sitting in the wheelchair.  But just barely.  I bent my head forward, feeling my solar plexus drain.  It seemed possible, entirely possible that I could tumble straight out of this wheelchair and onto the Marlou Memorial Carpet.  

And all this had been her experience, hadn't it?  Day after day, hour after hour.  Sometimes throwing up her stomach contents every 90 minutes.  I was experiencing some small part of what she had gone through.  And this made us closer, at this moment, in some not very pleasant ways.  Except for one distinctive difference.  

I am the one with the survivor guilt.  For although it might feel as though my current sickness would never end, the odds were unlikely.  Tomorrow would probably be not only another day, but a better one.  A healthy one.  Guilt, gratitude....

Even the finger effort at controlling the joystick took will.  A maneuver to the front door, the slow unlocking, turning the button, grabbing the door knob and opening...Lorna, morning helper, should turn up at the usual hour.  Still queasiness in the abdominal sector.  I parked the chair at the bathroom door.  Yes, someday, there will be much to be said for a wheelchair-accessible toilet and shower.  It's a good thing, I tell myself, that at least a few times a day I have to stand up and walk into the bathroom.  Good basic physiotherapy.  But not now.  It feels as though I will never stand again.  Still, there's that abdominal queasiness.  Perhaps not much of anything, but enough to have me parked here at the bathroom door...OK, up and actually standing and, now grabbing the railings so wisely installed last year and now sitting down.  And just in time.

Something I ate.  Perhaps my own spaghetti sauce from the previous night, the stuff so proudly made from my own actual tomatoes.  I consider this in the shower, how my own food could have gotten contaminated.  It doesn't make sense.  I remembered the film.  The DVD of WALL-E, the one I had just watched with a friend the previous evening...and in many ways it could have been the culprit.

I made it back to bed, continent, showered and awaiting Lorna.  I fell asleep.  I woke up when she arrived.  She got me dressed.  I had that great restorative, tea and sat in my recliner chair.  

WALL-E tells the tale of a waste-packing robot, a sort of a mobile garbage compactor who roams about a post-environmental-apocalypse city in America.  While the film degenerates into the ordinary, these first scenes of dystopic urban-scape New York, or wherever it is, grabbed at my gut.  The world of WALL-E is straight out of Samuel Beckett, the zero landscape, the meaningless and inexplicable work routine.  But it's when WALL-E returns to his robot's home, a trailer full of favorite scrounged objects that the gears shift into something more effectively poignant.  At least, this is how the film hit me Sunday evening.  The creature living alone.  Amusing himself in solitary ways.

And then, of course, WALL-E meets another robot.  Her appearance in this wasteland and his sighting her and approaching her and losing her and finding her again and again...while she follows 'directive,' mindless of him, it all got to me.  Human loneliness.  The desperation to connect.  And all so heart wrenchingly hopeless.  I didn't laugh very much at WALL-E.  It was far too poignant.  Gut wrenching.  Enough to make someone sick.

Is it an orthopedic aid, an inquisitional leftover or a metaphor for something else?  I refer to the spring-loaded wrist stretching frame I wear for at least four hours a day.  Well, not every day.  On the days when I think of it.  And I'm not being seen in public.  And there is someone around to help me put it on -- and at the right time.  DynaSplint manufactures the thing.  And comes by occasionally to adjust it.  But mostly DynaSplint bills.  This quadriplegic wrist stretcher is being provided at what is doubtless a shocking cost, paid for through my insurance...and for what?  

Well, to be terribly frank, to make me look a bit less crippled.  My right wrist has become bent, contractured as they say in the physical medicine biz.  It looks, well, funny.  Or maybe grotesque.  Certainly crippled.  It represents what is the natural course of neuromuscular events.  My right wrist cannot extend, lacking the muscles to do so.  But it can flex, albeit involuntarily, and years, even decades, of too much bending and not enough straightening tilts things in a certain direction.  A bent direction.  So here we are, my wrist and I, and after decades of relative negligence and inadvertence we have what we have.  A telltale deformity common to those with paralyzed arms.  And who cares?

Well, I do.  Or maybe I don't.  The thing is so uncomfortable, the wrist-stretching splint, that it's very hard to say the experience is worth it.  Hours of painful tendon stretching to accomplish what?  Naturally, I told my doctor that the wrist needed stretching to improve my self care.  Help with activities of daily living.  A good way to fight loss of range of motion, this blog's namesake condition.  The doctor did not blink.  Renting this silly wrist splint is doubtless much cheaper than physiotherapy.  If I'd been on my toes, I probably could have scored a few interesting pharmaceuticals into the bargain.  Really, doctor, there's nothing like a little Ecstasy to loosen up your wrist.

The more interesting question is: when do I give up on this sort of thing?  After 40 years with paralysis, when does one just say that enough muscular skeletal improvement is enough?  I've come this far and will go no further.  It has become too hard.  

I don't know the answer.  I don't even trust the question.  Some days, the work of cripple maintenance seems more than I can manage.  On others, it's a breeze.  This very afternoon I sat down to a one-hour exercycle workout with very bad expectations.  At times recently, exercising has been all uphill.  I don't like it.  I don't want to do it.

And there is no more interesting example of this than travel.  I am bracing myself for a difficult trip to London on Saturday.  Why 'difficult' and why the bracing?  Because I was surprised at how tiring the last trip westward proved to be.  This jetlagged feeling in the solar plexus that comes a couple of hours before landing.  Which doesn't make sense, really, because the trip from Europe to California is actually kind of a breeze.  A flight that arrives at 2:30 San Francisco time, midafternoon, represents 10:30 in the UK evening, so I'm home and in my apartment before the really wee hours of time change hit.  So what's the big deal?

The big deal is that I don't know.  Mysterious things are happening inside me.  Call it the grieving process.  Call it anything.  Just don't call me after Saturday, because I'm gone.  And for the first time, and you can call me crazy, I'm feeling like it's going to be a fine trip, not particularly tiring and Elliot, Marlou's nephew, and I are going to have a good time.  On the airplane, I'm going to ask the flight attendants to help me get up and down to pee.  I'm going to restrict my consumption of English cheese and sausages, really I am, honest to God and absolutely no lying, this is the total truth.  Oh, and I'm leaving the wrist stretcher behind.