Hollow

Finding hollowness where once substance was held
I deny the metaphors and the dry humor
Of the practitioners of fiction who wield
Their empty wands of care and superstition
For if I but choose to renege upon my own convictions
Their construct of cards
Jokers all
Will collapse upon its own encumbrance
And nothing shall remain but my pain
Yet in that moment of clarity
What can emerge but a new superstition
A new metaphor
A unique caltrop
Is this moment more than I see
Or am I as delusional as those who seek to find me
Lost as I am in my own world and mind and faith and
Rotting flesh
The stench of which is apparently offensive only to me
And more so than the rank hypocrisy of the purveyors
Of snake oil and charms
Wordlessly I speak I cry out I call I swear
An oath of vengence that falls upon the ears
Dead and deaf
Of my birthright and my gift
Stripped of all efficacy
I must choose either to face the world
Powerless
Or fade away into that very nothingness
Signified by my own sound and fury
And I find that I relish not these so called choices
Finding each of them a lie
Spoken by a mute fool
To an ass
Back broken
By his time at the yoke

This is a quick post to announce a major change in the life of Cancer Can Bite Me. From this post forward, you can now find me at the new Cancer Can Bite Me, located at http://www.cancercanbiteme.com.

There will be many new additions to the site over time. Please be patient with me as I bring those new features online one at a time.

Perhaps someday we will return to this space, if we find that the new space does not serve our needs. In the meantime, I do hope you will join me in this experiment.

Be well, dear reader. I’ll see you soon.

Namaste.

Good evening, dear reader.

Have you ever had one of those days during which a single question constantly recurs, “Why did I get out of bed today?” Today was one of those days; it would have been better had I just slept through it. Of course, sleep was a large part of my problem. In the wee hours of this morning, I awoke sobbing. I had been trapped in an all-to-real dream that kept me raw and shaken throughout the day. I’m hoping that writing about it, and why I have reacted so strongly to it, will help. This will likely be the single most personal entry I have written in this blog, so if you’re not in the mood for that kind of emotion, I suggest you move on.

I won’t go into too much detail about the dream – partly because I’m still trying to distance myself from the particulars – but I will give you the main point. In this dream, I lost my father to a heart attack. I was there when it happened, and – again – I could do nothing to stop it. Now, keep in mind, my father is quite well, currently enjoying a road trip with my mother to visit friends, and looks much younger than his years. I don’t believe the dream to be a premonition of any kind. Of course, once I awoke and realized I had been dreaming, it didn’t stop me from picking up the phone in the middle of the night to make sure that everything was alright.

So, you ask, and justifiably so, why is this obvious figment of my imagination still haunting me? Why can I not let it go? Perhaps because it has reminded me of how close I have come to committing one of those tragic errors in which stubborn men refuse to verbalize their emotions regarding one another. It has reminded me of things left unsaid and actions left undone for no reason.

Sure, we allow false reasons to build up in our minds. I allow the dozens of things about which we disagree (some big, some small – all made larger than they should be by my pride) to interfere, to cloud my judgment, to form – on occasion – the seeds of resentment. But who doesn’t disagree in one affair or another with a parent? I am thirty-two years old, and still have both my parents to call upon in my times of need. How fortunate am I? How selfish – and foolish -  am I to take this for granted?

You see, dear reader, my father is my Superman. He always has been, and he always will be. He has more integrity and honor than any person I have ever met. And at times, I think I have hated him for it. I remember the times that I knew he could make my troubles go away – troubles I had inflicted upon myself through my own arrogance and foolishness – but he refused. At times like that, I could not see that he was forcing me to grow. To become someone better than who I was. I only felt my own short-sighted pain, and I resented his inaction.

But I have never thanked him for making those choices, which must have been unimaginably more difficult than I had ever considered.

My father has never wavered – to my knowledge – when standing up for what he believes. He is a man of conviction whose equal I am not likely to ever meet again. And on many of those convictions, we disagree. Yet in seeing him stand up for his, I have learned how to stand up for my own.

But for that lesson, I have never thanked him.

My father is often a man of few words, but those he chooses he does so wisely. This is a lesson I have not yet mastered, though I have seen it demonstrated so many times.

Don’t misunderstand me. There’s a bit of Clark Kent in there, too. I have seen moments of doubt, and of frailty, and of fear. But they were never moments of self-doubt, nor personal frailty, nor fear for himself. I have seen doubt furrow his brow when faced with the uncertain future of a dying son. I have seen the failty of his stalwart visage in the face of my pain. I have seen the ache in his eyes and his heart when he feared for my life as I lay in a hospital bed.

But for opening himself as he has done, for sharing his fear and doubt, for showing the me the man he is inside, I have never thanked him.

This is a mistake I can no longer bear to repeat.

Dad, for all these things, and so, so much more, thank you. Thank you. Thank you.

I love you.

Until next time, dear reader, take care of each other. And do not leave unspoken those things you cannot bear to remain silent for eternity.

Good afternoon, dear reader. I hope this weekend finds you well and relaxed. This has been an interesting week with many conflicting emotions for me to battle. I’m doing my best to stay positive, but doing so has proven difficult several times over the past few days.

The major occurrence this week was a visit to my surgical oncologist. This was the first time I’ve seen him in three months or so. True to his nature, he has retained his very skillful approach to his practice of medicine as well as his totally rubbish bedside manner. After the standard weigh-in and minor interrogation by one of the staff nurses, I was visited by a junior doctor, one of the new members of my oncologist’s team. Apparently, those interns/residents with whom I spent my time in the hospital have gone on to better things. However, this new resident (I’m assuming) informed me that my case had become somewhat legendary around the hospital corridors. I found that mildly amusing.

Finally, the oncologist himself arrived. After a few more questions and a brief examination of my airway, he consented to the removal of my trach tube. While at first the sensation was awkward, I acclimated very quickly. Suffice it to say, I’m thrilled to not have something lodged in my throat at all times. As he continued the exam, he was explaining the surgery to the new resident. As though he were oblivious to the fact that Adrianne and I were in the room, he made statements like, “This was as bad as a cancer of this type can be.” Once he finally acknowledged my presence again, he added, “We’re not out of the woods yet.” He then scoffed at the mention of the CT scan that was scheduled for two days later (by my chemotherapy oncologist) saying that I was not sufficiently past radiation therapy for the images to be of any use. He said that he wouldn’t ask for a CT until six months after radiation was over. When I offered to have the imaging center send him copies of the scan, he said point-blank, “No, they’ll be useless.” Charming, right? At least he’s a talented surgeon.

What gets to me is the fact that this gets to me. I hear the indifference in his voice and the warnings in his words, and I am immediately pulled back to the exact same place I was four or five months ago when this was going to kill me. I feel like all my progress is gone, all my resolve is gone, and I feel the same fear that almost overwhelmed me when this all began.

I don’t like feeling that way. I don’t want to feel that way. Quite frankly, I shouldn’t have to feel that way. A healthy respect for the legitimate concerns posed by this disease is one thing. Doom-and-gloom from a jackass physician is something entirely different. Is there no glimmer of hope, Doc? Really? My surgical margins were clear. The PET scan that was conducted before I began radiation therapy showed no signs of cancer anywhere in my body. I threw a (virtually) experimental combination of chemotherapy drugs at this monster while undergoing thirty-five radiation treatments (on the large side of the spectrum of radiation treatments). Not out of the woods? Thanks. Good to know. P.S., you’re a dick.

As for the rest of the week, I suppose it went alright. I think I’ve been hampered by the brush with the physician more than I consciously realize. I haven’t slept well. For much of the weekend, I simply felt off somehow. It’s hard to explain. Perhaps my subconscious is trying to tell me something, but I haven’t yet figured out what it is. Perhaps my subconscious doesn’t really exist.

Have you ever thought that you may be a figment of your own imagination? I’ve felt like that quite a bit lately. The person I was six months ago is gone. He simply does not exist any longer. For that matter, nor does the person who sat down and began penning this entry several hours ago. Between those times and now, there have been thoughts and ideas and fears and revelations that distinguish me from those men. The only me I know to exist is the one who is here at this very moment. Why should I fear my own mortality, my own death? The I who is is neither the I who was nor the I who will be.

Until next time, dear reader, take care of each other.

If you would be a real seeker after truth, it is necessary that at least once in your life you doubt, as far as possible, all things. —Rene Descartes

It’s just that they still seem too frequent, I suppose. When I was in the hospital, and when I first came home, I gave myself permission to feel “off,” so to speak. But I returned home on May 21st, three-and-a-half months ago, and I think that I subconsciously rescinded that permission somewhere along the way. I don’t actually recall doing it, though. Since then, I’ve returned to work, returned to the theatre, kept writing, started teaching again, signed up for an class that should have me thinking quite a bit about some things I find very interesting (it begins on the 16th of this month, so I’ll write more about it soon), reorganized my personal space at home – You remember when I wrote about the desk that Adrianne had purchased for me? I’ve added a small bookshelf with reference materials and filing space next to it, a few external hard drives and a second display for my laptop, and now all I need is a more comfortable chair. It’s really quite delightful; I’ll take some pictures of it soon and show you. – but I still feel out of it sometimes.

OK, more than sometimes. Let’s try often. And it’s mostly when I’m thinking. (I guess I should stop that.) When I’m at work, I’m too busy to focus on things like how I feel, unless I’m in an abnormally large amount of pain, and that lack of focus allows me to accomplish things. At home, it’s somewhat the same. When I can bury myself in a project – be it one of personal interest or just something around the house that needs to be done – I have the opportunity to leave behind the limitations that I feel so often throughout the day.

Like fatigue. I had every intention of taking care of some household chores that needed to be done this afternoon/evening. What happened instead? I made the mistake of sitting down, which lead to lying down, which led to sleep. For several hours. Even though I’d had an afternoon nap not three hours earlier. And I’m still tired. Adrianne has suggested that I start doing yoga again; I think it’s a brilliant suggestion. I just hope that I can convince myself to crawl out of bed a half-hour earlier every morning to start up my regimen again.

But will that allow me to feel less disconnected from everything? I hope so, but I’m honestly not sure. I need to reconnect; I know that. But there’s so much stress, and so little time already, that it will be difficult.

I need to get myself together. I know that. I am allowing myself to drift through my days, and this is a lack of focus that I cannot afford (and I mean that both literally and figuratively). I have too much to do.

So, if anyone knows a good resource for exercises for the moderately disabled, I’m all ears. I really could use some information. I’d like to start jogging again (ok, allow me to rephrase, I’d loathe to start jogging again, but I recognize that it would be very helpful and healthy; there, you happy now?), but I feel the baby steps of walking around the block with my cane a few times would be the better place to start.

I don’t know. I’ll figure something out. While I know that I will never be the person I was before all of this, I have to find a way back to the same vision. If that makes sense. Probably not.

Until next time, dear reader, take care of each other.

The mind selects, enhances and betrays; happenings fade from memory; people forget one another and, in the end, all that remains is the journey of the soul, those rare moments of spiritual revelation. What actually happened isn’t what matters, only the resulting scars and distinguishing marks. – Isabel Allende

To make a long story short, I made sure to speak slowly and clearly – I’ve gotten much better over the phone over the past couple of weeks – yet I was still having to repeat myself several times to be understood. I would choose different words so that I would not encounter phonemes that I am still unable to generate. The conversation ended when she said, “Y’all really should have somebody people can understand on the phone, don’t ya think?” Yes, you read that correctly. Yes, that is a direct quote.

As you might imagine, it is difficult to relate the barrage of hateful thoughts that scorched my brain as she posed that lovely question. If I began to string together insults, I don’t think I would ever finish. So I shan’t start. I’ll just go to bed.

Suffice it to say, she is the winner of the Why-I-Hate-People-Today competition. Good for her.

Until next time, dear reader, take care of each other. And refrain from being an ass-clown to those you encounter who are disabled. Thanks.

Now, a staple of the superhero mythology is, there’s the superhero and there’s the alter ego. Batman is actually Bruce Wayne, Spider-Man is actually Peter Parker. When that character wakes up in the morning, he’s Peter Parker. He has to put on a costume to become Spider-Man. And it is in that characteristic Superman stands alone. Superman didn’t become Superman. Superman was born Superman. When Superman wakes up in the morning, he’s Superman. His alter ego is Clark Kent. His outfit with the big red “S”, that’s the blanket he was wrapped in as a baby when the Kents found him. Those are his clothes. What Kent wears – the glasses, the business suit – that’s the costume. That’s the costume Superman wears to blend in with us. Clark Kent is how Superman views us. And what are the characteristics of Clark Kent. He’s weak… he’s unsure of himself… he’s a coward. Clark Kent is Superman’s critique on the whole human race. - Bill, Kill Bill Vol. 2

In the interim, however, I could not let pass without note th 70th anniversary of the commencement of World War II, which began 1 September 1939. For this occasion, it seems à propos to recall the poem “September 1, 1939″ by W. H. Auden. I would gladly contend that it is one of the most finely honed political poems ever written in the English language, at least on par with the slightly more well-known “Dulce et Decorum Est” by Wilfred Owen¹.

And so, for your reading pleasure on this day, “September 1, 1939″ by W. H. Auden:

I sit in one of the dives
On Fifty-second Street
Uncertain and afraid
As the clever hopes expire
Of a low dishonest decade:
Waves of anger and fear
Circulate over the bright
And darkened lands of the earth,
Obsessing our private lives;
The unmentionable odour of death
Offends the September night.

Accurate scholarship can
Unearth the whole offence
From Luther until now
That has driven a culture mad,
Find what occurred at Linz,
What huge imago made
A psychopathic god:
I and the public know
What all schoolchildren learn,
Those to whom evil is done
Do evil in return.

Exiled Thucydides knew
All that a speech can say
About Democracy,
And what dictators do,
The elderly rubbish they talk
To an apathetic grave;
Analysed all in his book,
The enlightenment driven away,
The habit-forming pain,
Mismanagement and grief:
We must suffer them all again.

Into this neutral air
Where blind skyscrapers use
Their full height to proclaim
The strength of Collective Man,
Each language pours its vain
Competitive excuse:
But who can live for long
In an euphoric dream;
Out of the mirror they stare,
Imperialism’s face
And the international wrong.

Faces along the bar
Cling to their average day:
The lights must never go out,
The music must always play,
All the conventions conspire
To make this fort assume
The furniture of home;
Lest we should see where we are,
Lost in a haunted wood,
Children afraid of the night
Who have never been happy or good.

The windiest militant trash
Important Persons shout
Is not so crude as our wish:
What mad Nijinsky wrote
About Diaghilev
Is true of the normal heart;
For the error bred in the bone
Of each woman and each man
Craves what it cannot have,
Not universal love
But to be loved alone.

From the conservative dark
Into the ethical life
The dense commuters come,
Repeating their morning vow;
“I will be true to the wife,
I’ll concentrate more on my work,”
And helpless governors wake
To resume their compulsory game:
Who can release them now,
Who can reach the deaf,
Who can speak for the dumb?

All I have is a voice
To undo the folded lie,
The romantic lie in the brain
Of the sensual man-in-the-street
And the lie of Authority
Whose buildings grope the sky:
There is no such thing as the State
And no one exists alone;
Hunger allows no choice
To the citizen or the police;
We must love one another or die.

Defenceless under the night
Our world in stupor lies;
Yet, dotted everywhere,
Ironic points of light
Flash out wherever the Just
Exchange their messages:
May I, composed like them
Of Eros and of dust,
Beleaguered by the same
Negation and despair,
Show an affirming flame.

___________________________

1 – For those of you who are curious, Owen’s poem was written just a few years earlier in 1917 in reaction to World War I; it was published in 1920 after the poet’s death. The title (and subsequent Latin phrase) from the poem – Dulce et decorum est pro patria mori – are taken from a much earlier poem by the Roman poet Horace. The translation is “It is good and fitting to die for one’s country.”

Good evening, dear reader. I don’t know why or how if happened, but I slept most of the day away. I wasn’t up particularly late yesterday evening, but somehow I managed to sleep for close to eighteen hours. I wish that I could say it had been restful. Rather, it was filled with violent dreams; one of them had a very movie-like feel to it. But the common thread in all of them is that I could not keep the people I cared about safe.

I’m awake now, but I feel like not much has changed. Since waking, I have explicably had the song Make a Man Out of You from Disney’s Mulan stuck in my head. And this is the first time in years that a Disney tune has reduced me to tears. But the song won’t go away with its fucking reminder of all that I no longer am, and I cannot stop crying.

In my dreams, I was powerless and afraid, scheming ways to safety because I was too much of a coward to stand up an fight. But my schemes were always found out, and those I cared about always suffered for them. And now that I am awake, there is no one to fight, I have already lost. I have been reduced to an echo of what I once was. And my family will suffer for it. I’d like to look for a better paying job, so that I could take better care of them, but who’s going to hire a tongueless urchin who can barely communicate? No, I’m stuck where I am. And what if someone were to threaten them? What could I do? These days, I need a cane to walk and an extra ten minutes to get anywhere I’m going. I am in no condition to defend anyone.

Maybe I just need the chance.

Until next time, dear friends, take care of each other.

We must be swift as a coursing river
With all the force of a great typhoon
With all the strength as a raging fire
Mysterious as the dark side of the moon

Anyway, I recently started a second blog for professional development. It will mostly be essays and entries regarding the intersection of educational best practices, technology and Internet developments, and computer geekery. For example, the first entry that I wrote is an explanation of an application for Mac OS X that I wrote last week. The next entry I’m planning concerns my concept of education and why many curricula today are much less efficient than they should be.

But the surprise wasn’t in an entry. Rather, is was found in one of the small sidebar elements that contains my contact information. As I was filling it out, I added some supplementary text that reads, “Have a question about one of the articles on this blog? Interested in further discussion? Do you need a conference speaker or a trainer for your staff?”

Let’s take a look at that last sentence, shall we? Did I just offer to speak at a conference? Yes, apparently I did. On one hand, this is not particularly groundbreaking. I have spoken at more than two dozen conferences and training sessions across the region over the past three years. On the other hand, I had a tongue for each of those occasions. Yet as I was setting everything up, the offer to speak seemed like a natural thing to include. It didn’t really hit me until several hours later, and I thought, “Wow, what if someone were to email me about a conference? Wouldn’t that be . . . different.”

Yes, it was a surprise. And I think there are two ways I can look at this. The first is that I have still not accepted my current plight, that I am still somewhere in the early stages of grief, and that none of this is real to me yet. I don’t believe this to be true. The second – and much more hopeful – interpretation is that, even subconsciously, I am refusing to allow my current condition to interfere with my life. I am pushing forward, fighting to maintain the same life I had a year ago. Suffice it to say, I am much more fond of the second interpretation.

That second interpretation is reinforced by a dream that has become recurring over the past couple of weeks. If I remember correctly, I’ve had the dream four times now. Much of the details are vague; I’m in a room, there are people there, a conversation is being had. About these elements, I can be no more specific than that. However, there is one strikingly vivid part of the dream, and that is what is taking place inside my mouth. As the conversation continues, I find that I want to participate, but I am having difficulty communicating. So I close my eyes (and at this point, the point-of-view in the dream shifts; now I am seeing everything as though through a camera placed at the back of my throat and pointed out the front of my mouth) and concentrate on my tongue. I pull, slowly at first, but forcefully, upward with it. Gradually, the edges begin to peel away from the bottom of my mouth where they were sutured. The edges rip a little, but there isn’t really any pain. Slowly, more of my tongue is freed until, at last, it has been completely liberated from its restraints. It isn’t quite like a normal tongue; it is not smooth and moist. It’s more like something out of a Stan Winston catalog; it is lumpy, variegated, and dry.

But it is functional. I can move it. And with it I can speak. Once I have freed it from bondage, I am able to communicate much more clearly.

Yes, I realize that the situation I have described is only infinitesimally possible. But the scenario for which it is a metaphor is far more possible. And I choose to believe in it. Which I’ll tell the audience the next time I speak at a conference.

Until next time, dear friends, take care of each other.

It is a great art to laugh at your own misfortune. – Danish proverb

_______________________

Post-script: I would be remiss if I failed to mention the passing of Senator Kennedy. To borrow from myself:

Remembering Senator Kennedy, and noting that he passed on the eve of 89th anniversary of the day the 19th Amendment went into effect (giving women the right to vote). Let us celebrate a career of women’s rights, civil rights, and economic and health legislation, a career dedicated to fighting for all those who needed a champion.

Huic ergo parce, Deus:
Pie Jesu Domine:
Dona eis requiem. Amen.

My morning routine is not what is was when I first came home from the hospital. At that time, I had more time in the morning, more flexibility, and I could take time to “eat” as part of a regimen. Now, however, I’m back to the same choice that most people face – eat at home or sleep more – and like many people, sleep wins. That extra half hour is golden.

When do I have breakfast? In the office, just before 8 am. When I get to work, I set up a gravity bag with two cans of vanilla syrup, about 6 oz. of hot coffee (for the vitamins), and the inner contents of two iron supplement softgels (removed by cutting into the pill with an Exacto knife and squeezing the contents into the coffee to dissolve). Over the next half hour, I’m able to inject the concoction while catching up on my morning email. It has become part of my routine.

Which is scary. You see, I don’t know how long I’ll be like this. How much longer I’ll have the tube for feedings. My hope is that it will be – at most – six more months. By then, I hope to have regained enough skill with my new teeth and fake tongue to be back to solid food. But what’s odd is that most of the time I don’t consciously miss breakfast anymore – until someone brings something in that smells of sausage and cholesterol, and then I start to drool uncontrollably.

I’m just afraid that I’ll accept living like this. It’s important for me to remember to fight against that acceptance every day.

Until next time, dear friends, take care of each other.

You must act as if it is impossible to fail. – Ashanti proverb