#SOL16: Lucid Dreaming, Dilaudid, and Cancer

And Full of Sleep (M.A. Reilly, 2012)

"...Into the bowl in which their wine was mixed, she slipped a drug that had the power of robbing grief and anger of their sting and banishing all painful memories. No one who swallowed this dissolved in their wine could shed a single tear that day, even for the death of his mother or father, or if they put his brother or his own son to the sword and he were there to see it done..." Homer, Odyssey

I. 

It's about 5:45 AM when my cell phone rings--the phone I keep bedside since Rob was first diagnosed with lung cancer back in August. 

It's Rob. 

He's calling to alert me that he's okay, but he has been in a train wreck. 

                                                                  Or maybe it was a multiple car crash out on the highway.  

Whichever it is he tells me it is all over the Internet and he says this while trying to open his laptop. He's worried because I'll see it and think he was badly hurt. He assures me he wasn't. When I explain to him that he has not been in any kind of crash and was moved more than a week ago from the physical rehab to the hospital because of a staph infection, he plows on unconvinced and reaffirms that he was in some type of massive accident.

"It was when they were moving me. I'll show you. I can't get my computer to work. I didn't want you to see it and worry."

I tell him where he is again and why and what happened yesterday and he starts to calm down. A profound sadness edges his words filling in the spaces this confusion causes and he begins to realize that what I am telling him feels truthful. He begins sifting and remembers bits of yesterday and for now knows me to be the one to tell him what's real.

"I must have been dreaming. It feels so real."

II.

Rob has been taking Dilaudid for breakthrough pain and with the new spots of cancer being found in his body this week, it is not surprising that the pain has increased. Breakthrough pain is pain that he experiences even though he is wearing several fentanyl transdermal patches on his arm. That's how painful lung cancer is when metastases are present.  Someone once described the pain from spinal metastases as icepicks being driven into his spine. Over and over.

Dilaudid is an effective pain medicine. At midweek, Rob was writhing in pain and the use of the drug ended that misery.  Watching him be in pain guts me. Any touch causes him more pain. It takes all of his energy to simply be.

Unfortunately, dilaudid overuse causes a set of serious problems. When Rob takes Dilaudid regularly, the person I know disappears. He becomes confused, paranoid and vehemently denies the dilaudid is an issue. He sleeps a lot, shakes, and his breathing becomes labored; his oxygen levels fall. I write about this as so often when we talk about cancer we don't necessarily talk about the stuff that rests below the common rhetoric of chemo, hair loss and nausea.  

Rob is off Dilaudid.  He and his doctor discussed it and a different drug will be used when the pain becomes unmanageable.  What's most significant though is the Rob recognized in a moment of clarity his loss of self. 

The Power of Dreaming: Feeling My Way

What the Lark Knows (M.A. Reilly, 2010)

I. Slow Walking

Back in December I concluded a post, When Things Fall Apart: Slow Walking on Made Roads, by writing:

The road before me is unmade.
Will send posts.

At the time I was facing unemployment, uncertainty and alternating between feeling very centered and very scared.  Nonetheless, I knew that doing what I had always done needed to end.  At that time, I wrote:

For the last year I have been writing about learning while walking.  This has been no accident.   And now as I leave my current job and step into that which I cannot define, I recognize that this is and will continue to be a time of significant growth and wonder, fueled by a disequilibrium that has not been soothed by simply taking the next job offer.  I am learning that there's real courage in saying no to job offers, especially in an economy as challenging as this one and with responsibilities to family.  Saying no is not easy.  And yet, I am reminded that simply agreeing to the next job offer that resembles what I am leaving at best 'resettles' my disequilibrium by providing a direction, a baseline, that repeats the same dynamic of schools as mechanistic places.

In the seven months since that post, I've figured out that going on the interviews for school-based jobs was at best, counter-productive.  I gave it up, that last bit of familiar security and I began dreaming instead about how I wanted my life and work to be. I wondered what might happen if I began paying attention to my dreams and saying them aloud.  In many interesting ways, this blog became a way of talking out loud.  Towards the end of 2010 when I began the blog, I had no idea anyone would actually read/view what I was posting and had even less belief that anyone would actually respond. Please know that your responses to my written and visual work, along with my husband and son's responses and support in our day-to-day lives, helped me to believe that I could create other paths to walk. I could not know that I would arrive here, tonight. There is so much to learn by acknowledging what I can't know and acting nonetheless.


II. Daring to Dream

Dreaming is no small matter especially as I learned to consider it child's play, and at best something I might do as entertainment after I finished the serious work of the day.  As a woman, dreaming was largely not something I allowed myself--or when I did, it was a private matter.  I didn't dare say it aloud. Although I daydreamed, I did not make time to follow the lines of possibility these dreams suggested as such action seemed wasteful, perhaps even foolish.

The Color of a Dream I Had (M.A. Reilly, 2009)

In freeing myself from the tangle of doing the work I have always done, I was able to begin to consider what if?  At the time I was working through this, Lolly Daskal (@LollyDaskal) recommended (via a tweet) Whitney Johnson's Dare, Dream, Do: Remarkable Things Happen When You Dare to Dream and I downloaded the book and began to read.  The work resonated. Johnson (2012) writes:

Conventional planning, at which many of us excel, will hold us in good stead as we dream, but dreaming is ultimately about feeling our way toward what we were meant to do (p. 175).

Feeling our way toward what we were meant to do is courageous work and feels right.  I started to dream about how I want to live my life, edging closer to partial understandings through happenstance.  I imagined what good I might do in the world via my own business--one dedicated to exploring and enhancing learning.   I began to appreciate the idea of being self-employed--of being responsible for the work I opted to do and not being limited by someone's version of schooling.

III. Thank You

A Thousand Years of Dreaming (M.A. Reilly, 2012)

I suspect I am not alone in dreaming, curtailing dreams, and bravely trying it again--and so I wanted to share this post.  So many good things have happened in this brief span of months and I have learned that being open to uncertainty is a requisite to dreaming and being.

As a pubic school educator, I have designed and worked to prevent reading-based difficulties for very young children and to intervene in literacy-based challenges for intermediate through high school students during the last 20 years. I've done this work as a teacher, administrator and professor. Because I  worked as a practitioner (regardless of job title), I have had the opportunity to learn so much by teaching, researching, and theorizing. This work across the years has resulted in hybrid practices that blend arts-based learning, direct instruction, culturally relevant pedagogies, with technology-based thinking and tools. Now I have the opportunity to apply this learning (along with new learning) to the consulting work I am designing and doing.

This summer I am working in a city to help teachers prevent reading difficulties for young children. I am so psyched to be teaching and applying what I love to do: engaging in meaningful and emerging work with teachers and students. I am confident that I will learn so much by applying what I observe and what I learn alongside children and their teachers to my practice.

Next fall, I will return to supporting literacy coaches working in NYC public schools as I did this past year, and will also co-teach and theorize with middle school students and their teachers in several urban public schools in NJ, as well as conduct a few other projects focusing on the early grades.  Alongside this, I will make art (both in and outside of classroom spaces).

I can't wait.

Fall Moon Rising (M.A. Reilly, 2011)

IV. Postscript

The road before me,
like all roads we make,
is still unmade.

Will send posts.












Work Cited
Johnson, Whitney (2012-05-08). Dare, Dream, Do: Remarkable Things Happen When You Dare to Dream. INgrooves. Kindle Edition

Those Kids Could Dream

Stop Stealing Dreams (by M.A. Reilly, 2.29.2012)

 “Everybody has a secret world inside of them. All of the people of the world, I mean everybody. No matter how dull and boring they are on the outside, inside them they've all got unimaginable, magnificent, wonderful, stupid, amazing worlds. Not just one world. Hundreds of them. Thousands maybe.”  

― Neil Gaiman, The Sandman, Vol. 5: A Game of You

I.
My father was a dreamer. You know the type. Distracted. Black socks with sandals. A man who studied flowers, represented labor, deeply loved my mother. One summer we trekked across the country and slept each night in a tent.

Each stop was a story. Each stop was an occasion to meet someone we did not know and to listen to them tell a piece of their life.

II.
That summer, my father passed along the capacity to dream to my brothers and me.  It would be his finest gift to us.  He did so by dreaming out loud: finding the wonder in the ordinary and laying it down with words we could follow. My brothers and I were born at the tail end of that generation that Seth Godin writes about:

When the economy hit its stride after World War II, it led to an explosion in dreams. Kids dreamed of walking on the moon or inventing a new kind of medical device. They dreamed of industry and science and politics and invention, and often, those dreams came true. It wasn’t surprising to get a chemistry set for your ninth birthday—and it was filled not with straightforward recipes, but with tons of cool powders and potions that burst into flame or stank up the entire house.
 
A generation dreamed of writing a bestseller or inventing a new kind of car design or perfecting a dance move.

We look back on that generation with a bit of awe. Those kids could dream. - Section 59. Seth Godin.

III.

Garrowby Hill

I can still remember the night when men first walked on the moon.  I was 10 and it was summer and we were driving home from visiting friends, up and down winding hills with all of us tucked into the Country Squire, passing house after house, one after the next, each lit with the soft glow of a television screen.  Years later I would see David Hockney's Garrowby Hill, and think, "Yes, this is like the road we traveled that night."

It would be the first time I heard Walt Whitman's homage to the perfect silence of stars and the first time I

looked up at the moon and saw it as something not made of cheese and myth. 

"Mary, up there men are walking. Anything is possible," my father would tell me.

IV.
In the basement of the house where I grew up, thousands of miles from the Dublin orphanage where I first lived, was an elaborate chemistry set that sat on top of several large sheets of green spray-painted plywood.  It was a complicated concoction that grew year to year as we each took our turn as alchemist.  It was a time when all things could be reused, reimagined, reinvented.

The discarded appliance box was a fort, a carriage, a rocket.
Sheets drying on a line were spirits to dance with, a tent to crawl beneath, a passageway to the East.
Bottle caps were the currency in a game you newly invented.
A stick of chalk and a sidewalk were the opening to possible worlds.

We were bricoleurs, making do with what was at hand. As such, a thing could not be limited by what another had intended. And perhaps that was the deepest secret I was to learn: Do not limit what you imagine by another's definition. 

V.
Tonight, I want to take solace in the moon.  Hoping for full and settling for what is: first quarter. Looking up, I see that we have traveled so very far from that night when we all walked on the moon, from when kids dreamed big dreams and schools, like home, were wonderfully imperfect. Then there was time for getting lost, for wandering about, for doing nothing.

VI.
Now we are told that bigger and better and more precise reckonings of what children need to know and be able to do have been defined.  Each age is the age of the unimaginable and yet now we have the list of things to know. Everything has been defined for us.

We can purchase the list, the clever frameworks, the myriad of tests, the packaged PD, the scientifically-proven research, the white paper, and with all of it, the secret promise to not be left behind.

But know this: beneath those endless products, we purchase certainty at a cost for we have been given a recipe with the intention that we follow it, precisely.

VII.
I think my father would be sad tonight beneath this quarter moon. A man, such as he, who dreamed would find it hard to breathe in this sterile place that we are forever perfecting, where the stuff of school is a möbius strip of endless intent.

There's no way out, the children whisper.

My father would see that with all the perfection and the rushing about that there is no time for dreaming, no time to wear cardigans, to meet the unexpected traveler, to wonder. 

VIII.
In schools, our children practice being very fast, very first, very certain.  They know there will be a test and then another for they are a möbius strip.  And these tests will tell them their worth, their true measure, and fear not--they will tell us our measure as well.

IX.
"We will measure," the new bards tell us.
They mouth this song without sound.
"Nothing else is possible," they sing.

X.
We are without stories. Instead, we have data.

XI.
The distance between the window in my son's room and the moon feels far tonight. It is late when I lean down and whisper, "You must not forget how to dream. When you dream you open a small hidden door."  I whisper it as he sleeps, an incantation of hope from a mother to her son.  A hope that he might hold up to shield himself from the certainty that frames his waking life.

XII.
Long ago men walked on the moon. Beneath them a daughter held her father's hand and knew all things were possible.  The same light that found me then, finds me tonight.