Stop

Whew. 

On my way to writing this blog, I accidentally hit some sequence of keys that deleted my whole last blog.  Which I very happily was able to find, thanks to Google cache.  And which inadvertently feeds into what I wanted to talk about today.

Life moves pretty fast, as Ferris says.  If you don't stop and look around for awhile, you could miss it.

Christmas is not the best time to think about stopping.  For me, it usually feels like a headlong rush into a brick wall, culminating with a bloody mary and cinnamon rolls on Christmas morning, and a nap afterwards that beckons like a reward in heaven granted only to jihadists.

There is all this pressure to get everything done IN TIME.  To get donations in BY THE END OF THE YEAR.  To clean up the business of this year and start preparing for NEXT YEAR.  It's all capital letters.  It's all urgency.  It's all about racing and getting it all done.  It's all about time and pressure.

This year, for us, it's a bit different because I simply can't race yet.  I simply can't do much of anything.  I've been in a lot of pain and hopped up on narcotics and feeling simply just terrible.  I'm hoping everyone in my family understands this, and I'm sure they do.  But it's going to be a very small and simple holiday, with (hopefully) an emphasis on meaning and not materialism.

We've scaled it down immensely.  It will only be the four of us for Christmas eve dinner and Christmas morning.  My presents (at least so far) are composed of things that can be purchased using an index finger and a cell phone.  It took me about a week to get the decorations down from the shelves in the garage and during a good afternoon I managed to get them up in the living room.  Then, Roger went out and fetched a beautiful little tree, solo, because I just couldn't do it.  It took three days to get it into the house.  It took two days to get some lights on it.  And it took another day or so to get the ornaments out and on it.  But it's done.  And, in the process, we kind of accidentally got into the outside lighting box and got some lights up on the outside of the house. 

So... it's sparkly and twinkly and looks a lot like Christmas all of a sudden.  It's only the.. 23rd... so I still have two days to try to get out into the world to do some actual shopping.  I have called in an order to Vroman's and had them pre-wrap some books.  My Amazon and Gap packages have arrived.  While waiting for a prescription I bought a ton of goofy stocking stuffers (generally aimed for ages 4 - 8) that hopefully will be equally fun for a bunch of tipsy young adults.  Whether I was up for it or not, it's kind of happened.  And... mainly since I've been so preoccupied with physical pain remediation.. .it's seemed kind of, well, emotionally painless as well. 

I snuck up on it, and it snuck up on me.  And it ended up feeling like kind of a slow speed headlong rush this year, rather than hell bent.  Which is a good thing.  And it makes me think in general how delicious, and vitally necessary, this idea of stopping really is.

I look forward into the new year with a certain amount of dread.  I'm not sure I'm up for being well.  I'm not sure I'm ready.  I'm so tired in body, mind, and spirit.  There are areas in my molecules that just want to give up and never move again.  And it feels to me that I am about to jump on a treadmill set at 20 MPH that will never stop and will never get slower and that I'll be hanging onto for the rest of my life until I, at that point, very thankfully keel over and die.

That's what it feels like.

But it doesn't have to be like that...does it?  I don't think it does.  And I think that learning the art of how to stop is probably the hardest lesson, and the most important lesson, I've got to learn from this whole thing.  And the one that has to be mastered going forward, or I risk having to learn it all over again.

Stopping.  It's what cancer cells don't know how to do.

And somehow I have to teach myself how to do it, so they will know how to do it, so we can stop acting like we're in a high speed car chase all the time.

I realized the other day that if I didn't figure this out, my stress level looking at my life would be doomed to always be through the roof.  I would be crazy with inundation and pressure.  I desperately crave ideas of vacation and peace... but even leaving town is full of stress.  Looking forward, I realized I needed some way to insert stopping into my daily life, so I knew I'd have a chance to ground, and to catch my breath.  An oasis from it all that I could look forward to.

It's not like I'm the first person in the world to feel this way.  And, as it turns out, there are many wise people in the world who know the answer.  I actually am married to someone who teaches this answer.  I mean, seriously. 

Duh.

Meditation.

Stopping is what meditation is all about.  Taking a moment, long or short, and just... getting back into the natural rhythms of the body and the world.  Paying attention to the moment, and not the brain.  Getting behind the torrent of thoughts and to do lists and fears and what ifs. 

It's just so simple and it's just so hard.  And, as I realized recently, it's not a nice to have.  It's not optional any more.  It's essential.  It's vital.  It's critically important that I have a way to stop, that I know and understand that at any moment I can stop, and that I practice it daily.  It's like those brake test sections of the freeway.  That ability to slow down has to be tested, and refined, and flexed... as constantly and consistently as possible.

I've known these concepts for awhile, but it only really hit me over the head recently.  It's vital.  It's doctor's orders.  It's as important to my well being, if not more so, than any of the surgery or chemo or radiation or medication I've had to undergo to save my life.

I've started using a little app called Insight Timer that tracks how long I sit and shows me who else around the world I've just sat (virtually) with.  It helps.  I respond well to little stars and graphs of cumulative minutes.  It also has a social media aspect so I can spy on my friend Jill to see when and how long she's sitting.  Yes, that's superficial, but it's kind of fun and keeps us both coming back to the practice.

It doesn't have to be done alone, this stopping.  But it does have to be done.  Looking forward, I do not want to long to be sick again to get an opportunity to sit on the couch and do a crossword puzzle.  I long to be able to do that, without self recrimination, even when I'm feeling great.  Maybe that will give me a way to feel great even longer.

In the meantime, I'm going to back up my words and take my medications, and do all the other things that will protect me in case I start to go too fast again.

Happy holidays, everyone.  I sincerely hope everyone has a moment to breathe in the crispy night air, enjoy the lights, and revel in the knowledge that even in darkness, there is the ability to renew, regroup, and rejoice.

It's Not an Either/Or

I've realized that I deeply believe in certain fundamental equations. And that I really need to look at these as I prepare to leave the houses of the healing and move forward with the process of revisioning my life.

These are the equations:

I can be happy in my soul. Or I can be materially comfortable.

I can be creatively fulfilled. Or I can provide for my family.

I can follow my heart now.  Or I can put it off until later, when everyone else's needs have been fulfilled.

I can have fun and flow during my day. Or I can exchange my time for money and have fun and flow afterwards, if I have time and energy.

Who I am and how I spend my time can never be the same.

Congruity is for other people, not me.

Being driven by creativity and passion is for other people, not me.

Being responsible and being creative are antithetical.

Having a corporate job and being creatively fulfilled are antithetical.

This last one is especially insidious, because the easy way to look at this is to see it as a contest between running away to join the circus (or in my case, an opera company) vs staying in my technology job, which is actually a somewhat creative job (when I can bushwhack through the office politics enough to do it.)

My impulse these days, as I'm sure readers of this blog have noticed, is to cut loose from the tethers of corporate America and throw myself fully into a wide variety of creative and entrepreneurial pursuits.  That sounds so fucking fun!  But it also sounds so fucking stupid!  It sounds fun and stupid!

It presupposes a lot of things, such as the ability to be insured while still being able to pay the mortgage.  It presupposes a life of such health and vitality that I'll be able to write books and run companies and do productions in such sufficient amounts that all the money will come together to keep us comfortable. It presupposes that the joy I'll feel at living a congruent life will override the stress I may feel at being a whole lot less solvent.

More equations:

Happy equals not being in a job.

Happy equals being creative.

Ergo, not being in a job equals being creative.

Is this true? Is it really engraved in stone that I have two, and only two, choices:  happy and creatively entrepreneurial, or unhappy and in a job?

I've been binge watching certain shows (The Newsroom, and Halt and Catch Fire and Sherlock, specifically) and realize that there are themes that really rivet my attention.  All of these people are fucking passionate about their jobs.  These people do not wake up and slog into the office, check their emails, and try to see if they can live with that morning's headache until lunch.  These people live and breathe what they do all day, and the paycheck they receive is a total footnote, a thing that shows up on its own as a little extra bonus.  They don't work... they live.  And they get paid (comfortably) to live their passions.  It doesn't really matter that it's in the context of an office or on their own... it's just what they do.  It's who they are.

And yes, these are fictional characters.  I get that.  But is it too much to ask that... in any form, in any configuration... that I get to live my passions and be comfortable?  That I can be materially successful and who I am, all at the same time?

That's the question I'm challenging the universe with these days.  I don't care how it works out.  But I want to remove the way the equation works, the one that says passion equals poverty, and drudgery equals wealth.

It does not have to be a choice between material comfort and creative happiness.

It does not have to be a choice between freedom and responsibility.

It does not have to be a choice between now and later.

It's not an either/or.

I will write this on my walls.  I will write this in the sky.  I will write this until I fully and completely understand it in my bone marrow.  I want to break down these constructs and build up some brand new ones.  Ones that uphold the notion of congruency and integration. Ones that allow me to be successful and passionate.  Ones that foster health in body, mind, and spirit.  Ones that open up these deeply seated gates and let the possibilities flood in.

Cowlicks

My hair is growing back. 

It's way cool to watch the process.  And I've realized that I have no idea how my own personal hair actually works.  I never had summer buzz cuts.  I never really knew where the part really wanted to be, or where a very short version of my hair would want to go, given the chance.  It's always been long, so it's always hung down.  Now that it's super short, I can watch it and learn what it likes to do.

For example.  Right now the sides want to go back.  Not sure why, but they feel like they want to be smoothed back.  And, for better or worse, when I was joking around and putting it into a little Mohawk... well, it seemed to like that as well.  Two parts, on either side, with the hair going into the middle.  That seems to work for now.

What the back is doing... I'm not really sure.  But I am seeing cowlicks in the front emerging, and feel a few more back on the crown.  The color looks some days like the salt will prevail, but other days the pepper is definitely still holding strong.  And there's a chance that it's starting to get just long enough to find its curl again.

As I was musing over this new thing called my hair the other day, it occurred to me that no matter what I do, I can't make the process go any faster.  It is evolving in exactly the way it wants to evolve, and there's no way to think it out ahead of time.  Will I wear it short, or long, or brushed back?  Will I color it or will the gray turn into a cool bad ass silver that I'll strut with bravado?  Will I try to work with the cowlicks or just let them get covered up by long hair again?  Where are we going with all this?  It is absolutely impossible to tell. Impossible to speed up.  Impossible to pre-plan.

And I found some solace in that.  Obviously I'm thinking a lot these days of what I want to do with my life going forward.  I want to know, now, immediately, what I should do about everything from here on out.  But... that's impossible.  Just like my hair, I may have to just wait and watch and feel into the situations as they grow into their fullness.  I may not know what the right thing to do is until my life evolves into to just the right place of knowingness.  A cowlick may appear that I will want to work around, or accentuate, or play with.  Something else may happen that I didn't foresee and I will want to explore that for awhile.

Just as time can't be saved and dribbles through the fingers of my life at a steady, maddening, inexorable pace... it also can't be hurried up.  As much as I want to save the good moments and hurry through the bad... it all goes by steadily.  I can't hold it, and I can't stop it, and I certainly don't want to kill it.  But I can watch what it unfolds, and play with the new opportunities as they present themselves.

So what

I've been thinking over that last post, and just keep coming back to this feeling of... well.. so what?  OK, so I can no longer be in denial, and it sucks.  Got it.  But... so what?

We live.  We die.  What do you do with something like that?

This is, of course, not new information. But sometimes it slaps you in the face a little bit.  Makes itself known in a way that is just too difficult to ignore.

There are all these things that simply cannot happen in our lives, given the nature of our time-bound existence.  There will never be enough time laying on the beach or sailing on the water or hiking on Mount Tam.  There will never be enough popcorn and movies. Or enough time with friends, or enough time alone. Not even remotely will there ever be enough time.  I can do some of the things I want to do, if I try, but I can't do even a fraction of it all.

The big question is how do I deal with that information?  Do I work harder, or less hard?  Do I tune in, turn on, and drop out?  Or do I dig in, drive on, and delve deep?  Is it about creating a future for my children, or maximizing the present for us now?  Is it about packing more into every day to try to get as much done as possible or is it about scaling way back, so that simplicity and silence rule, and the precious moments can be savored no matter what is going on?
On a very practical level, what changes after all of this?  How does this inform my life as I move forward... next year, next month, today, this morning?

I think, for me, it just forces a rethink of all my fundamental assumptions.  Or, maybe, it just revalidates things I've always known but tend to want to forget. 

Such as...

Health comes first.  My body needs to stay happy and healthy and intact for any of this to work.  And health is not just about not feeling like shit.  Health is about feeling good.  So all those things that make my body, mind, and spirit feel good ... those are first priority.  Food, exercise, sleep.  Those things that just are so fundamental and so easily dismissed.  They have to move up to the front of the line.  Doctor's orders.  Gotta do this part right.

I also need to take it easier on myself mentally.  Lighten up the to-do list, limit the time travel.  My brain loves to live in the future.  At its worst, this manifests as anxiety and worry... at its most benign it manifests as a constant tally of things that need to get done, resulting in feeling pretty crushed with responsibility much of the time.  To do lists are great.  I live by them.  But they often veer away from being useful checklists and become more of an indicator of how I will never be able to breathe and relax until I get things done first.  I've gotta work on that.  I'll put that on the list and get right on it.

I think it all boils down to the need to be conscious.  Like, right now.  Since the ability to do everything is impossible, the things I can do need to be appreciated to their fullest.  Sensory awareness, living in the moment, taking a nano second to breathe in the air, feel the breeze on the skin, taste the food, enjoy the hug.  Even if it's something that is just done as a means to an end... I can mean it.  I can work wholeheartedly at whatever task, rather than kill the time waiting until something becomes interesting enough to be worthy of my attention.  Stop the multi tasking.  Stop being arrogant and picky about what to care about. 

Time is my currency.  What I spend it on should have some value, right?  It's infinitely more valuable than money because when it's out...it's OUT.  So I need to pay attention.

Finally... there's the aspect of overburdening myself with all these shoulds and ought tos.  Basically, I think it's just about finding a way to flow with this river of time, in real time.  Not being a slave to an overplanned calendar.  Not being dominated by a to do list of my own making.  Just... being.  Taking care of this life. Soaking it all in like every moment is like visiting a new country, or getting a perfect massage.  Pulling it in and savoring it, whether it's a fabulous meal or a Big Mac. Just... tasting it.  Tasting the flavor of my life and appreciating each fleeting moment for what it has to offer.

The Gift

It's been quite a year.  I have much to be grateful for. And, to be honest, I have much that I'm not so grateful for.

At the beginning of this journey, I was suffused with gratitude for all the lessons I was learning, all the outpouring of love from friends and family, near and far.  I was acutely aware of the absolutely precious and fragile gift of life. And I was grateful for every morning, every breath of air on my face as I walked the dog, every moment of sensory proof that I was still incorporated here on this planet.

That was eight months ago.  I am still fully aware of all of those things.  And, at the same time, my physical and emotional well being has been worn down as I've walked inexorably through the dead marshes, weighted by my various tasks.  I have been cut and poisoned and radiated.  I have had more sleepless nights in the last eight months than the rest of my life combined.  I know fatigue better than my own family. (I have been joking, when I can joke recently, that a career in technical theatre is a great training ground for having cancer: you get so great at feeling like shit, you have a dozen different ways to push through it.)

Radiation, as I've said, is kicking me to the curb.  I am weary in my soul.  My body hurts.  I am beset by issues at my work that are causing me a huge amount of undue pressure and stress.  I want desperately to "chuck the works" (as Louis L'Amour used to say), and just... I dunno.  Leave.  Check out.  Go to a cabin in the woods (with wifi) and watch The Wire on my phone for hours on end.  Do crossword puzzles.  Write until there are no words.  Sleep until I'm actually rested.  Cry until the tears are exhausted.  Scream until I laugh.

But I can't do that.  I had hoped I'd have that moment, at some point after I'm out of the foxhole and the shelling has ceased.  I had hoped I'd have a breathing space that would allow me to really wrap my head around what has just happened.  But that apparently is not going to happen, unless I decide to leave the financial security of my job and just see how supportive the universe is of living my creative dreams.  Which could be an incredibly great scenario on many levels, and could be an incredibly stupid and stressful scenario on many other levels.

I'd love to write a blog that has the joy and deep gratitude that I was feeling in the spring.  But it's fall, and the days are short, and darkness is upon us.  Winter is coming, as they say.  For some of us, winter is here.

I had an interesting conversation with a social worker at my radiologist's office yesterday.  She is filling out some forms for me and we were talking about this whole cancer thing.  She seemed to have a deep understanding of what the journey has been like, and I said it sounded like she knew personally whereof she was speaking.  She said no, but that she got it.  And that the only difference between her and us is that she can still live in denial.

No.  Not the place in Egypt.

Denial is what is stripped away during this process.  That soft comforting blanket that I wrap around myself that says that the ticking time clock of my days will tick away forever.  Or, if not forever, for so long that by the time it starts petering out I will be so sick and tired of the business of life that I will be (in many ways) grateful for the final respite. Denial tells me that I will be ready.  Denial says that my relationships will have been neatly tied up, like a final episode of Downton Abbey. Denial says that all my words will have been written.  All my great ideas will have been executed, or at least played with until they've lost their shiny allure.  Denial says that I will no longer love my people so achingly, or that they won't love me, or that it won't be so hard.

Denial says that I can take my days and fritter them away because I have a million of them in front of me.  I can work too hard, or not work hard enough.  I can put off the things I want to do, because I have time to do the things I need to do first.  That I can take care of my precious mortal body last.  That I can make choices, or not make choices, and it will all be fine because I live in some kind of world in which I will be able to choose things differently later.

Denial forgets that I will only see so many more summers.  Denial tells me that I will always have a next time in Paris.  Denial tells me that, if all else fails, I will be able to wander the world as an unincorporated spirit and be able to hang out with all the friends who are far, and see all the things I've missed (without jet lag!) for eternity.  (I really am banking on this last one, just for the record.)

Having cancer gave me the gift of removing that denial.  It's a brutally difficult gift to accept.  It puts me out into the cold, without a buffer, without a comfortable place to hide.

The loss of denial is the ultimate reality check.  Once it's gone, it changes all things.  My relationships can no longer afford to harbor petty grudges and grievances.  I can no longer ignore questions about when I will start living a life that is full and creative and joyful.  Consciousness has been awakened.  Whether I go off and spend some desperately needed recuperation time holed up in a cabin with nothing but silence and wifi, or whether I quit my job and grab my creative reins with a fiery jihadist passion.. the consciousness puts it all in high relief.  These are my choices.  This is how I'm spending the finite minutes of my finite existence.

Is this a gift I'm thankful for?  I can't say I'm not.  It makes loud the quiet desperation of my days.  It thrusts me into an awakened state.  The insomnia is not just physical.  It is a spiritual insomnia as well. 

The removal of denial highlights one thing most of all, and that is my relationship to the people in my life. The ties that bind us together, the gluten that weaves our souls together with tight, tenacious bonds... that really is what matters at the end of the day. 

I will never be able to drift off into the night and not feel the pain of saying goodbye.  I will never be able to solve the Hobson's choice of either outliving my loved ones or leaving my loved ones behind.  Our days have to matter.  The interactions have to be compassionate.  The ties must be acknowledged.  It's a vale of tears, truly.  And that is real, and that is unavoidable, and that is the price of admission to this wondrous, incredible circus we have all been invited to join.

Happy thanksgiving, beloved fellow travelers.  May we all be kind to each other this, and every, season.

My bounce back

Isn't.

I am definitely in a slog here.  Something happened after chemo was done when, I think, everyone collectively was ready for me to be done, most especially me.

But I wasn't. 

And life decided to keep moving on.

And work kept working.

And daily stresses kept stressing.

And remodeling kept... well, actually, it didn't... which was a problem.

And, you know... business as usual.

But it wasn't.

So then I had surgery and that was... well, not a big huge surgery, just regular surgery.  Which, by this time, ain't no big thang, just something we do a few times a year.

But... you know: surgery.

So then I'm trying to get over surgery and, somehow, I just wasn't able to.  I was getting better, but not as fast as before.  And I was tired.  And my various cut up muscles hurt.  And I started getting depressed because life was still business as usual, and it felt like no one remembered that I was going through shit. 

Mainly, really, because I didn't remember any more.

Or I didn't want to.

And I realized the other day why I wasn't writing so many blogs.  It's a really depressing reason. 

It's because this is all getting to be normal.

Something, recuperation, something, recuperation, something, recuperation. What's so interesting about that? 

Life, death, life, death, life, death.  After awhile, you get kind of used to being in a foxhole, fighting the incoming.  You get kind of used to being poisoned, or cut, or nuked, or recovering from same.  Not much to write about. 

Being afraid is the new normal.

Being tired is the new normal.

Being abnormal is the new normal.

I started radiation last week.  It's fucking weird.  And neat, at the same time.  But mostly weird and creepy. They position me (lining up the four tattoos now on my body with the laser beams coming out of the ceiling and walls of the treatment room), and then this huge machine moves around and points itself at me, and then splats out this looooong moment of radioactivity, right at my body. 

It doesn't hurt, exactly.  It's like getting a really long xray at the dentist, like 15 seconds long, about five different times and angles.  Which doesn't seem all that long just saying it like that, except while it's going on I just can't help having images of Nevada desert test sites and weird extra-terrestrial tractor beams and deformed Hiroshima babies and burnt, crackling skin falling off of corpses.  You can think up a lot of stuff like that during 15 seconds of radiation.  I always hop off the table thinking I'm glowing a little, and... you know... not in a good way.

My bounce back isn't bouncing back.

Radiation is tiring.  Like, really fucking tiring.  Don't ask me why.  And, like the eskimos and their 25 words for snow (or something like that), I now have a wide variety of words and descriptions for fatigue.  If chemo fatigue resides in the bones, aching you from the inside, dragging your femur and your spine and your pelvis down to the middle of the earth... then radiation fatigue is like the color bleeding out of film.  It's like Marty McFly seeing pieces of himself disappear from the photograph in Back to the Future, just... fading away. 

Radiation fatigue is like being erased.  The colors are muted, moving to grayscale, and eventually to a sickly white haze.  Nothing is sharp.  Everything is depressing and dirty, like smog, coating everything with a dull, dumb apathy.  The will to live gets weaker.  Not in an absolute sense, but in a ground down attitudinal sense.  Nothing seems worth doing anything for.  Going somewhere involves parking the car: not worth the hassle.  Eating something involves deciding what exactly to eat: what's the point?  Even sleeping seems somewhat stupid, in that it won't really do much good except for the first five minutes after waking when I can sort of pretend that I'll spring up and not feel like gray Star Trek antimatter has infiltrated the spaces between the cells of my body.

That moment in the late summer, when the air has been thick and the moment between day and night is not so much twilight as just a silent resignation that another day has gone and won't ever come back again. The cars drive home and seem depressed, their drivers destined for another night of falling asleep in front of the tube, or fighting with their wives, or wishing they had a wife to fight with. 

Futility. That's what radiation fatigue feels like.  The futility of life.  The what the fuckness of it all.

Junk Time vs Whole Time

One of the things I realized when I was diagnosed is that there is a huge difference between eating well and not eating badly. I have always figured that, since I don't eat french fries with every meal, that I was a pretty good eater. I always was a few pounds overweight, nothing terribly noticeable (or at least so I told myself), and I never had any digestive or other issues. Ergo: I'm eating OK.  Basically, I only watched it when I was really unable to fit into my jeans comfortably, and other than that I tried not to overeat, over drink, or over stress about any of it.

Then this cancer thing happens. My risk factors were few: no cancer in my family, maybe a little bit overweight, and maybe not enough exercise. Maybe my nutritional needs could be met a little better. But even though these were all small issues individually, these were the things I could control... as opposed to the air I was breathing and the plastic bottles and the food additives, etc., that I could not.

So I started looking at nutrients, and the nutritional value of what was being put in my body. And what started to become really clear was that -- to really get the most nourishment out of food -- you have to eat a lot of it, and a lot of different kinds of it. And in order to do all that eating to get all those nutrients, you can't be full of stuff that gives you nothing at all.

Bye bye chocolate croissants.  Bye bye plain croissants.  Bye bye sugar and bye bye white carbs.  Bye bye dairy and bye bye, basically, to everything that did not nourish me directly.  And hello to everything that did.  So hello to protein, and hello to lots of vegetables, and hello to water, and hello to fruits and seaweed and nuts and even more vegetables.  Hello organic when possible.

Make sense?  The more you use up your appetite with stuff that doesn't do you a lot of harm (but doesn't do you much good either), the less able you are to fill yourself up with things that actually do you good, with minerals and vitamins and all that stuff that your body actually needs.

Now, think about this. Time is like our stomach. And how we fill it up can either be positive, negative, or neutral.

Interesting idea, right?

Like, up until very recently, I figured that as long as I wasn't doing actual harm to myself during my waking hours, I was living a pretty fulfilled life. But then there's the concept of doing good for yourself, taking care of yourself.  And how do you have time to do that if you're busy doing things that are, at best, not bad for you?

Don't get me wrong.  I am a big fan of binge watching cable series and scrolling through Facebook. I think there is soul value in those things, as long as they are ingested when the soul is needing that specific type of content.  I'm not being judgmental at all when it comes to, well, anything.

But for me, it's the neutral stuff in my life that I'm looking at these days.  Say, for example, work.  Absolutely, work is very important. For one thing, it enables me to buy the good nutritious organic fruits and vegetables at overly priced fancy markets so that I can take care of my body better.  I get that.  And I also get that this is a very privileged conversation to be starting, because it does presuppose that one has a choice in the matter of work, and that's a very good thing and not something that everyone has.

But... what about work that has neutral nutritional soul value?  Yes, it pays for the organic fruits and vegetables, it pays for the roof over the head, it pays for the gas to get to/from the job, it helps do a lot of things that require money.  But what if you are not doing something that really nourishes you?  What if who you are and what you do are no longer in line?  Again, I know, very few people get to have these questions, and even fewer wake up in the morning feeling fully integrated with their lives.  But hang with me here.

Isn't there kind of a concept of junk time?  Time spent that doesn't nourish?  Time spent that just kind of gets us through to the next thing, but neither intrinsically adds or subtracts much?

What if I could substitute some of that time for time that has more nutrients?  That fed soul and mind a bit more robustly?  What if I spent my time with whole activities... things that weren't fractured by multiple screens and noises and constant switching of mental and emotional channels? What if I  consumed my time in bites that were savored a little more deeply, chewed a little more thoroughly, and spiced with flavors that really were pleasing, rather than discordant and chaotic?

Wouldn't that be nice?  Wouldn't that make my soul a bit more satisfied at the end of the day? 

I want my soul to be sated.  I want it to lean back and belch after a good meal of time, picking at its teeth and savoring the little last remnants. I want it to grow fat and sassy, engorged on laughter with friends and moments of true creation and hours of feeling the sun and experiencing the world fully.  I want my soul to never have to diet, or starve for more things it needs.  I want my soul to be able to feast fully on time, as I spend my days on activities that grow and enhance and inspire it. 

I want my life to be an endless smorgasbord of soul smacking ways to spend my time.  If done correctly and mindfully, I think even the laundry can be given enough room to become a little soul tidbit, a bit of way to connect to family and home. I know it's a dream... but it's an intentional one, like eating only foods that are delicious and satisfying and good for my body to build itself back up with. 

Post Script

I am going to have to admit, I got a little bit wrong yesterday.  There is no denying that a good night's sleep helps.

I got one last night.

It did.

I'm humbled.

So I'm changing my metaphor:  If sleep knits up the ravell'd sleeve of care, then fatigue is the whole damn suit on the floor.  It will take more than mending just a sleeve to put it back together... but it's a start.

Tell Me About It

There are a set of comments and responses that I have found to be especially galling these days. "I hate my life," is one of them.  "I want to die," is another. "Really?" I want to say back.  "Really?  You're saying you want to die because you had a hard day and that guy at the gas station really pissed you off?"  I just want to slap the other person silly when I hear crap like that.  I want to say fine, great, let's switch places, and you go through chemo and surgery and descend into the underworld for days and weeks on end in an effort to stay alive... and then let's talk about how much you want to die. 

Phrases like that are profoundly insulting to someone going through cancer or cancer treatment.  I advise against using them.

Here's today's pet peeve.  "Tell me about it."  One of the most annoying responses ever.  It dismisses whatever the other person is saying and trumps it with a bigger fish story.   So I say, boy, I'm tired, and the other person says "Tell me about it."  And I think... really?  You really want me to tell you about it?  OK, then, I will.

Having cancer and going through cancer treatment is like going through an advanced degree program in fatigue. There are so many layers and types and colors and harmonies and syncopations of fatigue, it's hard to know how to classify all of them.

For starters... fatigue is not the same as being tired.  Being tired is to having fatigue as being a bit peckish is to dying of starvation.  They really shouldn't be grouped in the same category.  Being tired can almost always be cured by taking a nap or getting a better night's sleep.  And, don't get me wrong, I know fully how hard those two things can be. Getting a good night's sleep is as elusive to me these days as getting a good boyfriend was in my 20s, and entering into the mainstream of the day without a good six or seven hours under my belt is hellacious.  I feel like bugs are crawling under my skin as I approach the day like a recon patrol... point to point to point... make it to breakfast, then  maybe to lunch, and if I can make it to lunch maybe I can make it to the end of work... and finally I see the end in sight. It is oh so true. Tired SUCKS.

Fatigue is really different.  And it's not just like being super tired.  It's more like being super tired and knowing that no nap or good night's sleep in the world will ever... ever... help.  Its like being so tired that I don't even try any more to get some sleep, if that makes sense.  I've just turned into this night owl quasi insomniac because the fatigue is so uncomfortable that I don't even really try to sleep through it any more.

There are several layers of this feeling. If the fatigue is in your body, then it's like your muscles have been replaced with quivering bands of aching glue.  Remember those horrible fitness tests in elementary school?  (Well, if you're lucky you did not grow up in the age of torture to children... or maybe they still have them.)  There was one where you had to run 660 yards, or feet, or inches, or miles... I forget.. but it was a number that sounds very close to the mark of the devil and it was H.I.D.E.O.U.S.  Awful.  The worst days of my life were those testing days (Yeah? Tell me about it.).  But, seriously, they were awful.  And at the end of the three or four hours, or days, or years it took me to run those laps around the track, long after all the other little children were at home snug in their beds, long after the person who was supposed to be marking down my time in the little book that made the State of California happy enough to provide funding or whatever to the school system so it could make us do it all over again next year had given up in disgust and left the field and was now on his or her fifth Mai Tai at the tiki bar down the road... that was fatigue.  That feeling in my bones and in my muscles and in my... spirit... that was fatigue.

And then there's soul fatigue.  That's what has been weighing me down yesterday and today.  Soul fatigue has long fingers that go in deep, seeking out the light inside my molecules that gives me a sense of optimism or hope and crushing it like a bug.  It laughs at my resilience and shames it into skulking away into the corner. Soul fatigue comes from month after month of body fatigue, and knows that there is month after month to go.  Soul fatigue has a whole mental component.  Soul fatigue is body fatigue on steroids.  The embers of willingness to go on flicker and dim, flicker and dim.  In those rare instances that something penetrates the gloom... there is a brief lightening... but then it flickers out.  I look at the hideous goblins and wraiths hanging from the trees in my neighborhood, bedecked with spiderwebs and blood, and I think there... there... there is the face that belongs to this feeling.  It's a fatigue so close to death that waking up to the here and now is occasionally surprising, disconcerting.

I haven't been writing much because both these types of fatigue are weighing heavily on me these days.  My body is still recuperating from the surgery, resisting getting fully well by holding on to lingering muscle aches and treating me to random shooting pains and itches and (yes, I'll say it out load) even this weird sense of phantom lactation... as my nerves decide to wake up and spark like downed electrical wires after a hurricane.  The soul fatigue is the worst: I look at my life going forward and see no rest in sight, no possibility for change, no moment where I can hope to lay my head down and find as much true recuperation as I need.  It feels as though I will always be trying to catch up, and failing, and the rest of my years on the planet will be forever in search of a feeling of health, and relaxation, and deep peace.

I do know of some antidotes that work, at least temporarily.  Nature is one of them.  The smell of sage in the sun, the blue of the mountains rising above Altadena, the coolness of fall in the evening air... all good, all things that infuse body and soul with a little extra energy.  Exercise is another.  Walking the dog always helps.  I count the days when I can get back to yoga.  I seem to want to drink in solitude like a desperado crawling across the desert.  When I feel like this, most people drain my battery faster than I can recharge it.  Good content helps -- I'm scarfing down books at night when I can't sleep, and occasionally latching on to a good cable series which I indulge in in big time-consuming chunks.  Writing helps.  And even doing some of the bathroom remodeling project (oh dear god don't get me started with that story... the fact that I am now sealing my own grout at the end of a long day and in the spare moments of the weekends should tell you enough).  Even that helps.

It's not all futility.  There are moments of lightness.  I know I'll get through.  But this is the middle days reality I seem to be in these days.  Fatigue so many layers deep that it has become my constant companion.  The day would not seem complete without that feeling of leaden doom following me around everywhere.  And even though we sometimes share a laugh or two, that ghoul drags around after me, hanging on my flesh and dulling my senses.

So that's what this time is all about. You need a cup of coffee?  Tell me about it.

Sisyphus vs. Squirrel Alley

My life feels like some kind of Greek myth these days.  The heroine has to undergo four trials, each with its own set of obstacles and dangers, and if she endures these trials then... something good happens.  Or, more precisely in my case, something bad (hopefully) does not happen.

I realized tonight, as I was walking the dog back up the hill to the house, that the myth of Sisyphus is also applicable. Sisyphus: the guy who was condemned to pushing a huge rock up a hill, only to have it roll back down so he can push it up all over again.  We all know him; he's the ultimate metaphor for making the bed every morning, washing the dishes, the 40 hour work week. We love him because he embodies futility itself.

I think that the Camus version of the myth is where I got the following theory, but I may have made it up.  I've always maintained that the curse does not come on the uphill push, with the muscles straining and the rock threatening to crush. I've always maintained that the curse finds its true sweet spot when he's walking back downhill, in the consciousness that he is doomed to push the rock back up all over again.  In other words, the doing is not the problem; the thinking about doing is.

In between my four trials I have regained my health, or something that feels really close to it. In between, I walk more and more, I start to bike, I feel better and better.  Arguably, the third trial (chemotherapy) had five separate sub-trials, each one of which had the same cycle: down into the underworld with the infusion, five to seven days of feeling super crappy, and then two weeks of feeling better and better, until the weekend before the next infusion I felt like I was bursting with life and abundance of health.

Like Sisyphus, I also measure my well being in terms of hills.  I live on a cul-de-sac at the top of a moderately steep hill. I can't really walk around the block, so I walk varying lengths of distance down the hill and then back up the hill.  There's a cul-de-sac that branches off from my street that's only a few houses long, and I always dip into there because that's where there are the most squirrels and Sam really loves the squirrels.

On the bad days, I can make it down to Squirrel Alley and back.  Barely.  In the heat of the summer, I would have to sometimes pause and sit on a wall for a few moments to rest my laboring heart and catch my breath.  On the bad days my legs felt leaden, filled with aches and heaviness, and I would trudge through the walk, head down, looking at my feet as I forced them to go one after the other until we were done.

I could always tell when I was feeling better because I would start going one driveway down past Squirrel Alley, cross the street, do the lap around the Squirrel Alley cul-de-sac, and then come back up the hill to the house. The next day I would go one more driveway down and then back up.  Eventually I would make it all the way to the bottom of the hill, twice a day, and then back up... all without stopping except to let Sam sniff and do his biz.

Kind of like old Sis, huh?  Down the hill, up the hill.  Down the hill a little bit more... up the hill a little bit more.  And I have to say that... in real terms... it really is worse coming back up the hill.  Existential angst and consciousness notwithstanding, when the going is tough, it's the tough going that is the problem, and easing up is gratefully accepted.

But in the metaphorical sense, I have to say... I think there is more mental and emotional pain involved in the spaces between trials. As I get healthier I drink in the sensations of feeling good in huge greedy gulps, altogether aware that the feeling of vitality and strength I am currently enjoying is going to, once again, be taken away from me. 

It's extraordinarily bittersweet, and as this marathon drags on into its seventh/eighth/ninth months, I am finding myself cracking a little bit beneath its ongoingness.  Like, really?  Give me a fucking break here.  I just want to take my ability to walk down the hill and up the hill for granted again. I want to keep the feeling of my legs having muscles, and my heart having the strength to pump.  I want to get stronger and stronger and stronger, and not have ceaseless pain in one part of me or another.  I want to be able to move my arms without them hurting. I want my hair back.  I want to have a morning where I don't have to decide how much like a cancer victim I want to look today.

Sisyphus.  Up and down.  I do think the moments of health are the most chaotic for me.  When you're slogging up that hill, pushing that rock, well, there's not a lot else on your mind.  It sucks, you know it sucks, and you just can't wait for it not to suck.  It's very binary. 

But the way down hill is infinitely more complex.  It's mixed with relief and knowledge of the future and the sense of futility and gratitude, all at once. Do you curse your life because of what you've just been through and what you're about to go through again, or do you revel in the fact that the present moment is so very sweet?  It's both and neither.  And the emotions whipsaw between the two poles with chaotic randomness.  One minute glorying in the aching beauty of the now, and the next minute cursing the gods. Weepy from the profound exhaustion of the whole ordeal.

And yet... and yet... I am still so grateful for the opportunity to feel it, and learn from it, and dig in oh so deep. Without fear or ambition, I am grateful for this moment. I don't know if something good will come from my undergoing these trials, or whether I will (hopefully) be graced by avoiding something bad. But I'm in this myth for a reason, and the only way I can understand it is by embracing it fully.

The Land of Normalcy

The insidious part of feeling better is that everyone, especially myself, wants everything to go back to being Normal.  And Normal is a country in which I no longer fully belong.

Normal people make plans and can assume they will usually be able to follow through with them. These plans can include recreational things, like having dinner with friends, or going to a concert. These plans can include extended learning experiences, like enrolling in fun classes or gardening. These plans can include going to the Apple store to get a new phone because, oh, just for example, you were carrying too much fucking shit in your hands yesterday and dropped the fucking phone on fucking Fair Oaks Boulevard and cracked the hell out of the screen.

Normal people could deal with that.

Normal people have civilized, light, friendly conversations at dinner.  Their nerve endings are not exposed, waiting for the first opportunity to get aggravated. Their heart isn't just barely healed, the thinnest of membranes holding it together, just waiting to be broken again into a multitude of pieces.

On the other hand, Normal people aren't being bludgeoned over the head with the knowledge of their own mortality. In the land of Normalcy, life is full of an infinite number of petty grievances, unspoken frustrations, and simmering resentments. Normal people are generally pretty miserable, in a low grade way, because having no big picture perspective allows for the smaller picture stuff to grow magnificently in proportion.

Being Normal is like sitting bare-assed on a black ant hill, covered with creepy little bugs which won't exactly kill you but will make you wish you were dead.  Being outside of Normal is like looking down the barrel of a gun, so sure it will go off that you would do anything to stay alive.

I am a citizen of neither country and a visitor to both today.  I am OK enough to be bugged to shit by just about every human being I encounter (including, but not limited to, everyone who shops at an Apple store and everyone who works at an Apple store). I am OK enough to be ground down by the constant and still-prevalent soreness in my body.  But I am not OK enough to forget how really facing a good life-or-death crisis can make all the other shit disappear.  I am not OK enough to take the petty stuff lightly.

It is a dicey day here in the borderlands. A day without crisis enough to feel that delicious detachment from the mundane. A day without health enough to go out and bike, or swim, or engage in the world in a happy lighthearted way. I walk, I stand in line in the Apple store (and don't even get me started on the genius bar or their organizational structure that is so overly designed that you can't really find someone to help you, you have to kind of stumble upon them, in a, you know, intuitive way, because hierarchical systems are sooooo old school, so linear, so non creative), I manage my paperwork, I do my Sunday things.

But I'm not in the land of Normalcy yet. Nor am I feeling the glories of the anarchistic frontier.

Construction and Reconstruction

Is it just me, or do these look like little connected tumors?

They are tearing up our bathroom floor. Again.

While I recline, letting my latest incisions mend together, our contractor is hunched over our newly-tiled floor, chiseling off the tiles like scraping bubble gum off the undersides of church pews.

This whole thing started when I was recuperating from the mastectomy. I do not recuperate gracefully. I am either flat out, or I am getting better.  And getting better is usually indicated by my starting to clean. Depending on the illness, the cleaning can be as simple as sweeping the floors or as ambitious as rearranging a closet. However, I am in the big time now and I started seeing huge things that needed changing, and fixing, and improving. The most annoying (and allegedly the most easy) of which was the kitchen faucet. The faucet had been broken and leaking for years, and we periodically had to bail our cleaning products underneath the sink out from their swamp of overflow water.

We had used a contractor named Dave to do some repairs to my mom's condo, and we liked our working relationship with him. I think it was sometime about a week after my first surgery that I woke up one day with a "this aggression will not stand, man" attitude, and said we needed to call him and fix the sink once and for all.

So Dave comes out with his plumber guy, Memo, and they look around.  We start a bunch of blue sky talk about the ultimate remodel -- the bathroom, the kitchen, the exterior. But first, we just need to fix the sink. Which they do, and it's all reasonable... except that it comes with the inevitable good news/bad news: the sink is now fixed but our pipes (original to our 1951 vintage house) are crummy and corroded and need re-doing as well.

So we make a plan: do a copper repiping while we're on our soon-to-be-aborted trip to Seattle, and start on a little bit of the bathroom remodel. Remember this part from that whole story?  We come back and the house is in upheaval and we are down to the studs and it's all a mess.

Fast forward. The work on the bathroom continues, but more things come up. Our drains (not to be confused with the piping) are clogged and corroded and not to code. One of them does a neat little jog from the washing machine inside the garage, through a pipe outside the house (that people like to sit on during parties, no bueno), back under the kitchen sink (where the laundry water rises like a murky apparition every time we do laundry, which is bad if we're doing something like defrosting food or, you know, just standing there with guests we are trying to impress). So... drains.  We do those too.  Just a few thou more and, hey, in for a dime etc.

Fast forward some more. We pick out some cool flooring tile -- hexagonal white tile with a cute black pattern woven into it.  That informs the tiling -- how about white subway tile with a black pencil line. Cool.  I had originally thought we'd keep our tiling, but no, we nuke it. While we're at it, do we want to keep our tub?  First I think no, then I think yes. We could reglaze, or we could get a new tub.  Fun.  New tub.  Let's do that.  The first tub Dave picks out is cast iron and the right size, but too shallow.  Can't do that.  Need more water, not less. Then Dave picks out a good cast iron tub, deep. But, it's super expensive. And not that narrow. But that's OK and I'm about to pull the trigger when Dave says, hey, for the price of the cast iron tub, we can put in an acrylic whirlpool  Deep, narrow, with jets. Say... that sounds good. So we do that.

All is good, but it's wearing on the nerves. Our toiletries are in the office. Our dirty laundry is in the office. Everything is in the office, except for the dog. The dog does not stay in the office, nor in the house. In fact, the dog keeps getting out altogether. He gets out during the drain project. He gets out during the tiling project. He gets out through the gate that people forget to check.  He gets out when no one is looking. 

Sam planning his next escape

This is bad. Our dog... well, everyone knows Sam.  Like the rug (again, with the Lebowski reference), he ties the whole family together. So, Sam can't get out.  But he gets out.

The final straw comes last weekend. I am exhausted, stressed, and my mom generously gives us a night at the Langham hotel as a belated birthday present so I can R&R before my reconstructive surgery on Tuesday. I go over there first and have a lovely time by the pool while Roger checks in on the house to make sure everything is buttoned up before the workmen go home for the weekend. These are new workmen, just finishing up the floor, as Dave has to be out of town on family business. Dave swears they are good tile guys, fast, and will get the job done. We absolutely have to have a working bathroom by my surgery.

I sit poolside, happy as can be. I come back to the room and call a girlfriend and while we are yakking and laughing about home improvement projects, Roger comes in. "You don't know the half of it," he mutters. And, after I hang up, he proceeds to tell me what just transpired.

The workmen have put the floor tile on wrong. Like, completely wrong. The tile looks like it'd be a  really pretty simple a pattern to follow.  But you kind of have to pay attention. And if you don't... it is really easy to screw it up.  And when you screw it up, it looks really really bad. He shows me a picture of what it looked like and yes, it is, it's really bad.  The lines of tile go straight... until they don't.  There is nice spacing between the rows, until there isn't. He was trying to tell them what the problem was (with them not understanding what he was saying and indicating that it was all fine) when his phone rings.  It's the neighbor, up the street.  Is our dog named Sam?

This is when the shit hits the fan. The workmen have let the dog out through the front door this time, the floor is a disaster, they are pushing back, tempers flare. Roger kicks them out of the house, calls Memo, who comes over, and confirms that yes, indeed, it's all wrong.  And then Roger proceeds to come over to the Langham where we have a complete reality shift, relaxing and luxuriating, until we have to go back to real life altogether too soon.

Construction and reconstruction. Upheaval and calm. While on our one day vacation, I was able to get a bike ride in... a good ride, an exhilarating ride.  And I got some yoga in. And some Tai Chi.  And a lot of swimming.  And it was great. I felt bursting with health, the chemo finally letting go of its death grip on me, and I feel great.

48 hours later, I'm cut open, muscles slashed, new body parts added, and other body parts rearranged. Fat is extracted from my belly and deposited under my arm where they took the lymph nodes out. My body is filled with anesthesia. I start a regimen of pain killers which mess up brain, bowels, and basic equilibrium.

One day I'm fine, pedaling down Lake Avenue with the wind in my (well, admittedly still very short) hair.  The next day I'm a patient again, in the gown, the needle trying to find the vein, being rearranged from the inside out.

The floor is being torn up. Again. My body is being torn up. Again. We are getting rid of clogged drains, and tumors, and installing clean new infrastructures that will provide healthy sustenance for years to come. This is an expensive and time consuming process. Changing things from the inside out. Plumbing (and replumbing) the depths.

And it's not over. Not by a long shot.  But when it's done, my internal and external worlds will have been completely overhauled. Quality of life will be better. We will be set up for the next several decades, if all goes well.  Sometimes change comes in subtle shifts, sometimes all at once.  Apparently this is the year for everything to shift radically. 

The Listening Post

This is a post about listening. I've been conducting an experiment over the past few weeks in really trying to listen to my body.

It started when we went north on our soon-to-be-aborted trip to Seattle. We started off at our friends' farm over Labor Day. Because I had a whole week off and because it was going to be so relaxing going up to Seattle on the train (I know, I know, I just say that to make the gods chuckle now and then), I thought I'd try to stop taking the various medications and over the counter pills that I had gotten pretty used to taking.

It wasn't an actual issue, but I was starting to notice that there was a little bit of Judy Garland going on. I had started taking an Ativan at night to sleep when I was riddled with anxiety prior to the first surgery. I then kept taking it during chemo because it has a double benefit of calming me down as well as quelling nausea. It didn't seem to have any negative side effects, and I would always get a good night's sleep after taking it.

After awhile, though, I thought that maybe I shouldn't be taking an Ativan every day. So I switched off on some days and took a couple Ibuprofen PMs to go to sleep. That was also a good idea, mostly. I would wake up with slightly less soreness, and having had a good night's sleep.

So that has been my protocol for sleeping the past five months or so -- Ativan or Ibuprofen PM. And it's been working just fine.

During surgery and chemo, I've also gotten used to taking a whole smorgasbord of pills prescribed for pain. Besides the usual go-to bottle of ibuprofen or acetaminophen, there's been an array of fancier stuff. After surgery, I became well acquainted with Percocet and its little brother Norco. Percocet works super well for me... and puts me in a lovely state in which all care wafts away and I find myself blissfully breathing oh so deeply, just floating on a pillow of pain free relaxation. It's almost too good, so I didn't take it all that often. It also has some side effects like constipation, and even though it is wonderful when in pain... when not in pain I find it nicer to be alert and coherent, even though it's harder to breathe fully and floating away is not quite as accessible. Or, well, possible.

Norco is pretty good for pain and I tend to take it when I need something good, but not too good.  I also have the big granddaddy of all pain killers in my arsenal... Dilaudid... and while I have only had to resort to it once, it's nice to know it's there, like having an M16 in the closet just in case I need to get all NRA on somebody's ass in a pinch.

I actually don't overdo any of this, at all. If the bottle says one every six hours, I end up taking one every six days, if that.  But the reliance on external aid becomes habitual. And since I've been part of the medical machine, I've just gotten used to altering my physical state with chemicals just to get through all this shit. But on Labor Day weekend, I figured hey, chemo is over, I'm on vacation, let's see what happens if I skip, say, the Ativan for one night.

So, I skipped it. First night: horrible nightmares. Woke myself and Roger up. Intense anxiety, creepy things, worlds crumbling. Well, I thought when I finally extricated myself from all of it and gratefully woke up, that was interesting. I must be... you know... somewhat less easy going with this whole cancer thing than maybe I've been letting on.

Good information.

The rest of the day was fine and I didn't get any headaches or need anything else to change my body chemistry, so we visited with friends and, while everyone else altered their chemistry with copious amounts of Knob Creek, I was very happy with water and food and feeling my own natural ebbs and flows.

That night, no Ativan: no bad dreams. I slept OK, as I usually do when with these friends.  And so it went. I stopped taking everything at night, and then gradually I realized I had stopped taking anything during the day. If I had a headache, which happens frequently, I would just watch it for awhile. If it was not going to tip into a migraine, I wasn't going to medicate it.  It ended up, all but once, moving through my body like a high pressure weather system, eventually resolving itself.

The week we were out of town, everything worked great. I felt pretty good, except for the ongoing fatigue of the chemo, which still hasn't fully gotten out of my system.  And it was great to not have any other chemicals in my body. In my attempt to listen to my body, I figured that it was better to take the ear plugs out.  If it hurts, or feels tired, having no extra chemicals enabled me to know that better. It was like removing the baffling from the walls, the pillows from over the head.  If something was happening, I would be able to feel all its colors, and then decide from there how to deal with it.

It felt good.  Feeling the  clarity of my feelings (even when bad) felt like good information.  I had a few headaches, but they resolved on their own in just about the same amount of time as when I'd pop a few motrin.

Coming home, however, has been a slightly different story. I have been working on this blog for awhile, waiting for a really great happy wrap up in which I can state, with wisdom and great modesty, that I have figured out how to waft through my life now with very out any help at all from any of my little friends in pill bottles.

HAH!

SO not the case.  We came home to our only bathroom demolished (intentionally.... I decided to give myself a major remodeling project for my birthday).  Our life now consists of moving back and forth from the office to the bathroom, carrying in our toothpaste, our shampoo, juggling where to hang our towels, invariably getting into the water and realizing we've forgotten the soap, etc.  It has been challenging, for some of us more than others, and it's put the collective's teeth on edge.

Also, there have been quite a few stressors at work... deadlines/people/the very fact of having to work. I've been putting in more hours than usual and that's kind of kicked my ass.  If that wasn't enough, we had a little meeting with our accountant last week to finally do our 2013 return, with results that were not as... um... good as we'd hoped. And all this is really bringing home the point that I'm not getting through the side effects of the chemo as quickly as (I feel) I should be.  With some kind of stresses I'm fine, but with others I become crushed with fatigue, the energy violently abandoning my body as soon as the negative energy levels hit any kind of critical mass. I am suffering fools not gladly at all. And my sleep has been getting worse, and worse, and worse.

And meanwhile... my little experiment of listening to my body.  Which, by the way, is pretty much constantly telling me some variation of FUCK YOU.

It's ironic. When I was going through the worst of the chemo, on days I didn't feel totally like a rotting, stinking carcass... I felt pretty good.  Sure, my throat was sore and my bones hurt and my head hurt and I was so fatigued that I couldn't really walk from room to room without my heart pounding... but... hey! not feeling like a rotting, stinking carcass felt pretty damn fucking good!  So, I'd walk around with a cheery countenance and two thumbs up saying, right on right on right on, I'm feeling fine.  

Cut to: five weeks after chemo. My brain is telling me I need to pull up my big girl panties and be better already.  It's high time to be fine and to be getting back on the bike and start training for that century.  At the VERY least, it's high time to be able to get through the day without falling apart.

Wrong.

In my new experiment of listening to my body, I really want my body to be purring with gratitude that it's not being poisoned any more. Which it is, mostly. But bodies are fickle, like a dog.  The punishment is over, now it wants to go out on a walk, run and play fetch, do the things it used to do.  But... it can't.  It's tired.  It's very anxious.  I'm starting to worry about the reconstructive surgery I'm having in six days. My brain is telling me that the new normal should be feeling great.  But it isn't. Not all the time. What I'm hearing is my body now kind of whimpering, saying it's tired, and scared, and pissed off at all the people and things in the world that are impeding its ability to rest, and feel safe, and heal up in total peace.

One of whom is, well, me.

So this is what daily life without buffers is like, I'm finding out. It is loud. It is annoying. It is a heavy weight on my shoulders. And there is nowhere to hide if the outside world starts punching me out. If I start getting a headache, well, then I'm getting a headache. I can't take a couple of pills and soldier on, in my new experiment. I have to notice that I have a headache. I have to pay attention to what's really happening. Somehow I have to develop new strategies, rather than reaching for the pill bottle.  Rather than crouching into a fetal position and buffering myself up with padding, I have to get all Jet Li on life's ass, and learn how to fight back, or extricate myself gracefully from the situation. Maybe fighting back is doing more yoga. Maybe fighting back is telling more people they need to solve their own problems, or move to a place where their problems don't become my problems. Maybe fighting back is, literally, fighting back. I don't know.  I've always put on the shin guards and kevlar and hoped for the best.


I'm not so sure about this experiment any more, to tell you the truth. I've caved in twice, and have been happy for my decision both times. One day last week, with the temperatures soaring above 100, I hit a place where my energy was so drained I couldn't even move. I finally took a Fioricet, a great medication that usually works well to combat a migraine (as long as I don't take it too often, at which point it starts to cause a migraine).  I made it through the day.  And was happy about that.
But then, the daisy chain started up again. The pill contained caffeine, a substance I am pathetically sensitive to (the last time I had a small green tea in the morning, I was up until 1:40 am).  This time was no different. I took the Fioricet and then could not sleep. Which meant I was exhausted the next day.  And then I couldn't sleep the next night either. Which meant I wanted to reach for something to help me sleep.  Which I ended up doing last night because I was going to start to cry if I didn't get a good night's sleep.

Insidious stuff.  Once you stop listening, it's just so easy to keep not listening. And our lives these days are stressful and difficult, and it's built into our culture to not really feel that very acutely.  And the culture gives us hundreds of ways to artificially make it through a day/week/month/year/lifetime at the pace that it kind of wants us to keep.  I'm living within my own nervous system these days --- I don't drink, smoke, ingest caffeine, or even eat sugar any more. I don't taking anything that pumps me up or calms me down -- and that's a very tough place to live for me within a normal working life. We are all encouraged to be little Judy Garlands, tweaking our systems to feel up, but not too up, and down, but not too down.

How to live within my own nervous system? How to engage in a work life and family life and creative life without external uppers, downers, relaxers, enhancers, or other types of buffers?  Is it mandated that in order to live in this society, with its implied demands and conventions, I have to push and pull and tweak and ignore my body's basic messages?  Boy, I hate that equation.

Is there a way to do this?  I don't know. Maybe it's not possible to do this every day... maybe balance and harmony aren't possible during that short a time. But I need to figure this out enough so that I don't feel my heart constricting with fear that I'm literally killing myself every time I get stressed out at work, or angry at some person who just simply isn't getting what I'm trying to say.

I don't think I have an ending to this blog.  I can't tell you I've figured this out.  I took an Ativan last night and slept like gangbusters. And I'll probably do the same tonight.

And maybe, with that good night of sleep under my belt... maybe I'll figure out how to do all this better tomorrow.

Re: Union

There were 364 of us, the Blair High School class of 1974. We came of age in the year that Richard Nixon was impeached, the Rubik's cube was invented, and the first bar code was scanned. Stephen King published his first novel, and Leonardo DiCapprio was born. The fall of Saigon was less than a year away. And there were many people in the world who actually had been to Woodstock.

Last night we had our 40th class reunion.

And as I try to untangle my complicated mix of emotions about it, I realize that the joy and depth I feel at seeing everyone again has absolutely nothing to do with high school whatsoever.

At one point last night, we were encouraged to come up to the mic to reminisce about any funny stories we may remember. I laughed. Funny?  High school? My memories of high school were ones of noisy, unskilled desperation. I was rebellious, enraged, aching with an intolerable and incoherent desire for freedom. While everyone around me (seemingly) was happily enjoying their carefree days of youth, I embraced causes with a fierce passion -- from the local politics of enforced integration, to joining our local evangelical church group -- then fell from grace howling at the universe. I performed miniscule acts of defiance, smoking cigarettes on the park benches across from the school, running away to San Francisco. My only respite was when I put words on a page (with a typewriter, when I wanted to use advanced technology). I dropped out of my last semester and took my one remaining class at a continuation school. I don't believe either of my parents attended my graduation. I could not wait.... could not wait... to get out of town forever.

Out of our class of 364, I think I had a working acquaintance with maybe... six people. I was not in the popular crowd, I didn't "date," I lasted two days on the swim team (two days of panic, fear, and abject misery). I was a journalism geek who used my privileges to ditch school. I was the Senior Class Treasurer, winning with a write in campaign of maybe five votes. My happiest moments were in my history and English classes, and I used math to make sense of my world, working out trig proofs late at night while my mother divorced her husband and our house was foreclosed upon outside my bedroom door.

Funny moments? Not too many.

The breakthrough moment happened a few years ago at a reunion when I was talking to someone and heard what had really been going on with her during high school -- not good stuff, stuff that in many ways was worse than my own life. As we talked, I learned about some other stories, what was happening in other families. Alcoholism, abuse, alienation, pain. And I finally had a lightbulb moment: I wasn't the only one feeling pain back then!  DUH!  We were all suffering, and all so unskilled at dealing with it. It was not that everyone except me was fine and cool and happy on the surface. No! It was a world of surface smiles and underground turmoil. We were all in this together but separately, and had no power to escape, no idea how to work our way through our pain except to just blunder through it and get out the other side.

Last night I realized that most of my conversations were deliciously connected. It was an utter delight to see the friends I had known well, and to dive into our old quirky senses of humor and mutual shit-giving. It was also amazing to engage in conversation with people I didn't necessarily know in high school. We were now reminiscing about conversations and experiences we'd had in previous reunions, and not at all about Blair. These are new old friends, people I find I want to spend as much time as possible with, having known and not known them for so many decades.

And yet, it was more than that. Forty years ago, I felt that all these people were from a different planet from me. But we launched from the same space and time, were taught the same way to think by the same teachers, were caught in the same vortex and spun out into the world simultaneously.  We are far more similar than different, most of us, and that is fascinating to me. Like family, we did not really have a choice in being thrown in with each other, and we weren't the tribe that most of us would be lucky enough to find in college, but we know the same people, we know each others' parents, we have a common database of images, sounds, and events to share and cross reference and grow from.

So last night was amazing. As with high school, I went in thinking I was the only one dealing with health issues. But as the evening progressed, I realized that -- once again -- we are all in more or less the same boat. We are now the caretakers of our parents (if they are still alive). We are now watching our children launch into their own new trajectories. We still exchange stories of drug taking (now anti-inflammatories and steroids). And we all now think of our mortality with a presence and perspective that we never used to have.

The moments together are precious. It's like, finally, we have figured out how to talk to each other on a level that matters. There was not a lot of strutting about this time, talking (however obliquely) about careers and money and outward success. The questions were about people: how many children, how are your parents, how are you. We talked about how we feel our lives are going, and about the lessons we are now learning that we wish we'd learned 25 years ago. Lessons, usually, about health, and simplicity, and cutting through the bullshit.

Forty years, and I feel like I'm just starting to scratch the surface with these people.

I treasure these new/old connections. They link me to a past that I've long ago forgiven but never really knew. I still don't remotely know all 363 of my other classmates, but I'm getting there. And the kids are all right. We have mostly made it through OK, and are talking about doing this again far sooner. The final graduation will come soon enough for all of us, and there is still time to enjoy our carefree days of youth.

How I Spent My Summer Vacation - Part III: The Frogs' Epilogue

A few days later, from the balcony of our lodge overlooking the marshlands of Bodega Bay, we asked ourselves: if we had known that the train would arrive a full seven hours late, would we have toughed it out?  Were we just old softies who couldn't wait more than three hours to fulfill a commitment and have an adventure in the process? When I had to write the email to the opera company telling them that I wasn't going to make it, the words sounded pretty lame: we couldn't wait any longer. It sounded really wimpy and lightweight when stated that way. Or was it the uncertainty that made us bail at 3 a.m.?  Was it possible that, if someone had had a crystal ball and had said "Train 14 to Seattle will be arriving at 7 a.m." that we could have figured out a way to make it work?

I think we could have. Even though it would have been impossible in reality for anyone to know when it would have arrived... I do think that knowing what we were up against would have made the whole situation a lot more manageable. I could have put down the phone and stopped obsessively checking the status app. We could have made ourselves a bit more comfortable in the truck and actually gotten several hours of sleep, maybe. We could even conceivably have rented a cheap hotel room nearby and gotten a few hours in a real bed. It would still have taken a toll, for sure, and my poor toxin-ridden body would certainly have been massively uncomfortable... but I think we would have figured out a way to do it.

And there was the dream. Boy, we wanted that train trip so badly we could taste it. We really were very attached to the whole idea of a train ride and had been fantasizing about it for months. Giving up on that possibility felt like losing out on a trip to Disneyland when you're eight. Or having your parents say you could not get that puppy you had been holding every day after school at the pet store. The slap in the face of reality was brutal.  You mean... we looked at each other... after all this...we might not get to even ride on the train?

On the other hand, it could not be disputed that the dream was turning a bit towards the nightmare. Looking forward into the new version of the dream, we would get on the train after 5 a.m., sleep for ... how long?... in the neato roommette.  But then it'd be daylight. And breakfast would be served between certain hours... and so we'd drag ourselves to breakfast and sit and look at all the other bleary passengers, some of whom had actually been on the train when the accident happened. What would we talk about? Would the mood be one of carefree abandon? Uh... probably not, actually. My guess is that the mood would be grim, irritable, or (at best) just totally leaden with fatigue. The number of hours we left late would also indicate the number of hours we'd get in late, and the following day would be also spent playing catch up. So...even though I'd like to make the case that we were both fairly evolved in paying attention to the present moment sensory reality we were experiencing and honoring it... I have to admit that we were both pretty convinced by this point that our future moment sensory reality (should we continue with the train plan) was going to suck bigtime too.

Bailing meant saying good-bye to all of it, the good and the bad. Bailing meant letting people down. And feeling weak and somewhat stupid... both for thinking up this dumb idea in the first place, and then giving up before knowing exactly how horrible our life could get.

In the end, I think it was the not knowing that made it impossible to continue. It was the extreme fatigue, at 3 a.m, and the knowledge that we would have at least two more hours to go...and even that looking doubtful. As Roger said, we were like frogs being slowly boiled to death. If we had known the true situation, we could have either accepted our fate, or jumped out of the pot sooner.

Like most frogs, we were extraordinarily glad we jumped. When I looked at the app the following day and saw that we would have been sitting at the station until 7 a.m, we both heaved a huge sigh of disbelief and relief.  Can you imagine, we said. Another four hours of that? Unreal.

We got our money, we ended up having an incredibly lovely time wandering around Sacramento for a day and then driving through the wine country and staying a couple of nights at the Bodega Bay Lodge... but stories about other people being relaxed and happy and eating scrumptious meals are just not as compelling as zombie apocalypses, so I'll spare you.

I have two points to make:

One. As a great Vulcan philosopher once said: "After a time, you may find that having is not so pleasing a thing after all as wanting. It is not logical, but it is often true." We wanted the train ride badly, so badly that the wanting overrode all possible logic (up to a point). The wanting was almost definitely going to be more pleasing than the having, once (or if) it ever arrived. At a certain point (about 3 a.m., to be exact) we were forced to pay attention to that fact.

Two. Once we started to detach from that wanting, a whole world of possibilities opened up to us. We were suddenly free and easy and far more relaxed. Somehow we had to just let go and see the situation for what it was (i.e., totally fucked) and then make a decision based on that, rather than based on a whirlwind of conjecture, fear, need to live up to other people's expectations, etc.

And yes, it's highly possible that a year ago, pre-diagnosis, I would have toughed it out. And it may have worked out fine. But we were glad we didn't tough it out one more minute. We were pushing the river, as the saying goes. We were pushing to make something work that really didn't want to work. And the second we gave up and acknowledged that we just couldn't do it any more... it gave way and softened for us. We became the owners of our lives again. Possibilities again became endless.

When things started pushing back at us, it turned out it was for a reason. Maybe we weren't meant to go up to Seattle after all. Maybe we were meant to shut up and relax for awhile. In a place where there was beauty, and nature, and not much else to do.

I have stop for a moment and acknowledge that man. The man that night, who decided to do something that probably broke the hearts of everyone who knew him. He stopped a train full of 200 people. Those people waited in the train, with far less freedom than we had up in Sacramento, for seven hours. The people meeting them waited. They friends and family waited. And all along the tracks going north, people in stations waited. And that waiting caused their friends and family to wait. People met each other during that wait, and fell in love. People fought during that wait, and fell out of love. A ripple spread through hundreds, or thousands of people, as we were all directly affected by this one tragic decision of this one deeply conflicted man. And because of that ripple, all our lives were changed.

How I Spent My Summer Vacaton: Part II - God Laughs

Best. Plan. Ever.

Right?

So we do the first part, and it goes flawlessly. Visit our friends over Labor Day, eat freshly picked food, laugh, reconnect, drive down to Sacramento, have a lovely dinner with some other dear friends... then off to the train station to await our train!

Very excited were we. We parked in the parking lot, paid fifty bucks for five days in advance, and unloaded our suitcases, our yoga mats, and our backpacks from the back of the truck. (I forgot to mention, we were also going to have plenty of time for yoga.) We locked up and went into the train station, trying to avoid eye contact from the several street people loitering in front of the building.

This was an omen of what was to come.

We were a couple of hours early. No big deal, except that the train station was, as it turns out, not air conditioned. And it was Sacramento on Labor Day, which means about 90 degrees outside and about 80 inside. No problem, we were going to be on the train in a few hours and everything would be fine.

We check the board: departure time was supposed to be 11:59 PM, and it showed a delay of maybe ten minutes. No problem. Didn't even register.

We walk around the train station a little bit, looking at the cool old benches (those double sided ones that look kind of like Scrabble tile holders, but with people sitting on both sides... the middle having vents for heating in the cold winter months... so cool... so old fashioned.) Unfortunately, we could not see the ceiling as the entire floor of the station was covered by scaffolding, to retrofit everything from about 10 feet above our heads and upwards. So there was a slightly dystopian air to the whole thing... padded scaffolding legs in the middle of aisles, windows boarded up, plastic sheeting swaying in the breeze from the sole oscillating fan standing in the corner.  But it was charming, right?  And we were only going to be there for two short hours, so we could bask in the ambiance.

There were relatively few passengers in the terminal.  Several were obviously crazy, or homeless, or both. These people wandered in and out, taking to themselves or soliciting money. Kind of made us uncomfortable, but we basked in our soon-to-be status of First Class Passengers and tried to extend compassion outward into the world (while still studiously avoiding eye contact.)

In an effort to start killing the two hours until our midnight departure, I went to a kiosk and picked up a couple of copies of all the train schedules they had. We could start fantasizing about our next train trip while we wait. Roger found a fully bound Amtrak book with all the routes marked and described, sleeping compartments diagrammed, and the other bonus programs highlighted (on some routes there are park rangers or historians that go through the train providing a live travelogue for the places you are traveling through).  Train travel was looking better and better to us. Using our fingers we plotted out routes to New Orleans, New York, Chicago, Kansas City, Vancouver. All without getting on an airplane!  All with the graciousness and ease of stepping on a train.

Time passed.  People started trickling in. A pleasant middle aged woman, sharply dressed and looking chipper, was dropped off by a man who looked to be her son. A dazed girl pushing a huge suitcase was followed by two dazed parents, wheeling in another 150 pounds of luggage, apparently all setting out to get her installed in college. A bleached blond sat down, kinked her bare legs over her backpack on the bench, and looked around at the world as if wondering who would buy her a drink next. A young man of indeterminate ethnicity wandered in and sat down, lost in his earbuds, thumbs moving on his cell phone.

As we waited, I glanced up at the departure time every so often. And, every time I did, we were delayed by a little bit more.  But there was no rhyme or reason, that I could tell.  At 10:30, the departure time was about 12:16.  At 10:45, the departure time was about 12:22. For awhile that was fine. Things happen. Part of the charm of this old fashioned mode of transportation. However, after it edged to a departure time of about 1:15, we started to get a little worried. This was a trend going in the wrong direction: 1:15 was a long way away.

I started getting texts from Amtrak stating updated departure times. This was interesting, especially as the times stated in the texts did not seem to jive with the times on the board. I then started checking the Amtrak application on my phone... a slick little app, actually, that gives you the status of trains by station. The app gave us a slightly different time altogether.

We were getting concerned. And we were tired. Roger had helped our friends pick vegetables in the fields all morning, and I was still really trashed from the chemo. (In the master plan, I would be feeling fine... it being, like, ten days after the last treatment and all. In reality... I was headachy and hot, the station was starting to get on my nerves, and a wickedly deep exhaustion was starting to set in.) More passengers were now crowded into the terminal. Women with small children looked like they were already about to lose their minds. An older woman in a neck brace wheeled in pile of lumpy, disjointed bags and luggage.

Roger persuaded me to try to lie down and get some rest on the bench. Having checked the board and my Amtrak app one last time, I managed to sleep for about 4 minutes. Then the wafting cigarette smoke outside and the worry that something would appear to change the story in one of my information streams woke me up.

We decided to decamp to the truck. For some reason, I stubbornly wanted to stay in the station, with some weird fear that something interesting would happen in the station that I wouldn't know about instantly by using my phone.  But, it was hot. The single oscillating fan in the corner of the huge station was not doing the trick. And Roger didn't want to lie down on the bench like I was, assuming (with a fair amount of logic) that when we both woke up we'd be stripped to the skivvies, all our possessions gone, and our heads on a stack of Amtrak timetables. (I was nervous just going into the bathroom alone after one encounter in there with a woman who was standing by the sinks, lifting up her shirt and staring down at her flat belly. We were the only ones in there and as I peed I wondered... is she pregnant? Is an alien going to burst out at any moment? What is going on here?)

So we moved to the truck. Pushed the front seats back and used our pillows for comfort. Much better. Roger set his alarm for 12:30 and was able to start dozing but I became distracted by the drama going on in the car beside me. There were two people in there, like a woman and her grown son, both sucking massively and obsessively on cigarettes. (Don't get me started on cigarettes and the tobacco industry.) He was on his cell phone, talking to his girlfriend I assumed, from snippets I caught. He would periodically get out of the car and walk around, and I noticed his arm was in a cast. I watched them like I'd watch a dream--exhausted, leaden, and unable to wake up.

There was a lot  of activity in the parking lot, a commingling of homeless/crazy people with sleep-deprived/going-crazy waiting passengers. It was like Sacramento was really coming alive now that the clock had passed midnight.

On a whim I decided to do a search on something like "Amtrak delays" and found that there is an entire website devoted to Amtrak delays. Not a good sign. I opened it up and... scrolling through the various tweets (all ending with some variation of #AmtrakFail), I see something that perks me up and makes my stomach drop at the same time.

Fatal accident in Oakland, northbound Coast Starlight train #14. Train still being held at the scene.

WTF?

W?

T?

F?

Sure enough. I googled several sources. There had been a fatal accident. Some guy had run his car underneath the train and it ground to halt six blocks later. Preliminary news stories indicated a probable suicide. Whoa... this suddenly did not sound easy, or short, or ... you know... fun or romantic any more. We were waiting for a train that had just killed someone.

Bad.

Bad bad bad.

I told Roger the news, then got out of the truck and went back inside the station. The homeless and crazy people had become emboldened. They were starting to openly solicit, and the muttering seemed to be louder, coming from multiple people at once.

The woman at the desk was absolutely willing to talk about the situation, but couldn't give me any definitive news about when it would actually arrive. No, it had not yet moved from Oakland. Once it moved, it would be here in two hours. No, there was no way of estimating when it would be able to move. We were all stuck in the uncertainty.

I went back and updated Roger. The earliest it could get there at this point was well past 2 a.m., and there was absolutely no way of knowing if that was remotely accurate. Roger intoned that we'd be waiting there until the sun came up.  I said I thought that was overly dire, but of course I didn't know anything either. We weren't getting along particularly well at this point, to tell you the truth. I felt tired to the point of nausea, Roger was exhausted, and there was nothing for us to do but sit there, and wait.

At this point, I became somewhat autistic. Having only the internet and my phone apps as a source of reference, I started absolutely obsessively checking the Amtrak app and scanning for more news. Periodically, I'd go back inside the station (now crowded with the undead) and check the board to see what its version of reality would be.

As I went deep into the dharma of the railroad timetable, I started cross referencing the published schedules against the Amtrak app to try to distinguish the difference between the reality (of the app and the station times) and estimation (of the timetable), between theory and practice. I noticed that every station has its arrival and  departure time listed as the same minute (which is beautifully condensed and elegant technical writing, but of course can never match with reality.) This meant every departure was at least two minutes later than estimated, two minutes that they would gain (in theory) while traveling to the next station.

I also realized that it was totally futile to keep looking at the estimated time of arrival in Sacramento as the farther away you got from the actual stopped train, the more extrapolated and mushy the numbers would be.  Instead, I had to find the last station that had hard dates and times (as opposed to estimates) and then move one station further up the line, to the station that had the next estimated dates and times. That station (which happened to be Jack London in Oakland) would be the station where the train was stuck. As soon as those times turned from estimates to actuals, our train would be on its way.

So I checked that status, oh, about every ten seconds. At about 1 a.m. we started looking at other options. What if got a refund and flew to Seattle? I looked at all the flights available at such short notice and there was nothing good. The flights would cost about $900 total (which would have been covered by the refund from the train tickets), but somehow $900 for plane tickets routed through Denver and Phoenix and leaving at 6:15 in the morning was just not nearly as enticing as the train travel we had envisioned. Plus, I'm very reluctant to fly yet because of the possibility of my arm swelling up with lymphedema. After looking at the prices and the schedules and considering the possibility of causing a lymphatic fluid event... we just couldn't do it. We thought about driving 16 hours each way... and just couldn't do that either. It was either give up Seattle and the conference altogether, or tough it out. And our ability to think coherently was diminishing with every passing second.

Then we had another thought. If this train was three or four hours late departing Sacramento, then it would be three or four hours late arriving in Seattle, right? Which means we would arrive sometime after midnight the next night, the amount of time past midnight as unknowable as the amount of time that we still had to wait, which would mean we'd spend a good deal of our day off trying to recover from getting there. The options were getting less and less clear and more and more unpleasant.

At around 2:00 am we gave up being in the truck and relocated back into the station. By this time the full zombie apocalypse was under way. The kids were screaming or (worse) just staring into space and keening. The nicely dressed woman who had been dropped off by her son had a brow furrowed with pain as she sat by her nice luggage and periodically rubbed her hand through her hair. There was very little distinction any more between who was a passenger and who was local. Everyone by this time was homeless; everyone by this time was crazy.

We asked the guy behind the counter what the situation was. He didn't know a lot more than we did, but he said he'd make some calls. A few minutes later he called my name on the loudspeaker to get us to come back to the window. They were just now starting to take the car out from under the train. He estimated that would take 30 - 40 minutes. He also said that it would take two hours to get from Oakland to Sacramento. So, conceivably, we could be on our way as early as 4:45. That would be the optimistic scenario.

We said we'd check back and went outside to the back platform where it was a bit cooler and there was a breeze. The woman in the neck brace was sitting on a bench with her lumpy bags and baggage, talking to herself. The Amtrak employee we'd just talked to was now sitting on a luggage moving cart, smoking a cigarette... biding his time like the rest of us. We found an empty bench and looked at the back yard of the train depot: the empty platforms, the promises of journeys yet to come. We felt nothing any more. Except maybe a deep desire to never hear another Johnny Cash song ever again.

I finally said the words. If it goes past 5 a.m., we're going to scrub the mission. We were both sorely disappointed on many levels and it was inconceivable to me that I would miss the conference that I had worked to hard to prepare for. But the show might have to go on without me. It was possible that I had found, finally, one of my absolute limits.

We went back inside and checked the board: 4:45.

I checked my app about fifty times.

I checked the board again:5:02.

Five in the morning. We were now looking at two more hours of doing this, at the absolute minimum. It was like falling in love with someone you were sure you'd spend the rest of your life with, and then fighting all the time over really stupid stuff.  Or really big stuff.  But after awhile, after all the soul grinding, plodding through, agonizingly painful moments with this person, it just becomes finally oh so clear: it's over. You just can't do it any more. And the worst part of all of it is the losing of the dream.

All the fantasies we had conjured up had to be dismantled. There would be no more harmonicas wailing the blues, no more gracious porters, no more observation car reveries. We would not see the Puget Sound glittering in the sunlight from the deck of a ferry boat. I would not charm the dozens of presenters into booking Gilbert and Sullivan into their well-funded theatres. I would not have great train stories to tell my co-workers (at least no stories that involved actually being on a train.) We would not see a train; would not smell that creosote smell of the ties; would not look out on the world through a hypnotically moving window.

It was clear, absolutely clear, that we were done.