Briefly . . . A Book and A Blog

Two new excellent resources have been passed on to me by colleagues in the UK.  I share them here.

1.  Susan Corr, professor at the University of Northhampton, called our attention to a new book:  Situating Everyday Life, by Sarah Pink.  I have ordered a copy.  The cover of the book — a view into the inside of a loaded dishwasher — grabs my attention. The chapter titles are equally engaging; here is a sample:

Tracing Neighborhood Flows:  Making a Garden Place

Theorizing the Familiar:  Practices and Places

Beyond doing the Dishes:  Putting Kitchen Practices in Place

The Digital Places of Everyday Life.

The author is a Professor of Social Sciences at Loughborough University.  From my perusal of the book online, it appears that the content is couched in the language and theory of sociology.  Coming from that theoretical perspective, i.e. outside the foundations of occupational theory, can be considered an advantage  — offering us a wider and more expanded approach to the study of everyday occupation.  Such new understandings can be thought of as enriching, in the same way that earning a higher degree in a related field is enriching.  Obviously, we need continued depth and expansion in our occupational theory as well; we need both in order to keep our theory, education, and practice alive and moving forward.

2.  In response to the previous posting about Craig Schuff and his blog “Broken Cord” http://brokencord.blogspot.com, Suzanne Martin from the University of Ulster sent me the online address for a second blog written by a person about her life and experiences after a spinal cord injury.

http://thetimes.co.uk/tto/public/profile/Melanie-Reid 

Melanie Reid is a journalist who writes for The Times UK.  In April of 2010, Melanie sustained a riding accident.  From what I viewed on her blog, it seems many of her postings are about her everyday life experiences since her accident, though she also blogs about other aspects of her life as a journalist.  She prefaces the titles for her postings related to her spinal cord injury rather cleverly with the words, “Spinal Column”; a sampling of the subtitles offers the following:

Things that make me forget I’m paralyzed

2012 highs and lows

A moment of triumph

Parties are just too painful

A taste of freedom

Game of thrones

There’s a bit of feistiness in her postings — perhaps a part of her personality that is helpful to her in terms of being able to get on with her life after the riding accident.

The book Situating Everyday Life and Melanie Reid’s blog offer excellent material for teaching and for professional enrichment.  Go for it!

“Broken Cord”

“In spring 2011, UW-Madison researcher Craig Schuff had a lot going for him — not the least of which was his work in the College of Engineering where he was on the verge of perfecting a much-anticipated device that can be used to detect explosives and even nuclear material in suspicious packages . . . Today, after an accident in Lake Monona, Schuff is paralyzed from the neck down” (Wisconsin State Journal, Ron Seely, Dec. 26, 2012).

Many of us in occupational therapy, who have worked with people in rehabilitation after spinal cord injuries, recognize the scenario of a young man and a diving accident.  We recognize, too, the dramatic change the consequences bring to the trajectory of a person’s life.  Craig Schuff’s life underwent such a change in May 2011.

Ten days after his diving accident, Craig started writing a blog — sharing with clarity and power his inner life with a “broken cord” (http://brokencord.blogspot.com). The blog is “riveting,” as the reporter for the newspaper article stated. Craig has a remarkable ability to describe his life vividly, putting into words his lived experience since that life-changing dive.

To us, as occupational therapists, and to students in the field, his blog is a gift — an open window into the magnitude of the experience:  the moment of the break, the days that followed in the intensive care unit, the weeks of rehabilitation, and, months later, his release from the hospital and return to research and academic pursuits. Craig says that, at first, “It was assumed that I would be moving back home to do, well . . . nothing.”  He said it seemed like everybody thought  he would simply cease his graduate work and return to his family’s home in Tennessee.  But with a combination of his own determination, a pulling together of the engineering department resources and technology, and changing attitudes of those around him, Schuff has rejected the expectation of doing “nothing,” continuing instead to pursue his studies and research.  Yet, at the same time, Craig is aware of the fragility of his day to day existence.  He says in one of his later blog entries, “The reality of it strikes me every day, the frailty of my existence; the utter dependence on other people for basic survival; the hours and hours burned every day for the sake of the few that are left over; lost opportunities; lost love and lost passion; lost windows, roads, and channels; lost wind and lost waves; lost touch. . . I cannot drag what is past into the present.  I can only be who I am in this moment, in this light.”  

Craig Schuff begins his blog entries in June 2011 with the signature event — the dive.  As I had so many times before, I dove with hands outstretched.  As I broke the surface of the water, my past life was stripped away.  I felt a sharp shock to my neck, followed by no pain at all. . . . I floated face down below the surface, pale skin illuminated by the moonlight, my hair floating freely.  My mind churned . . . gotta swim up . . . my arms will not move, my legs will not move . . . this is it . . . I am going to die.”  He rouses from unconsciousness many hours later, after surgery, in an ICU.

In his third posting, June 29, 2011, Craig describes his almost unendurable experience of brutal pain.  “The pain in my neck is a crackling fire.  I think back to my previous experiences of pain.  This pain is like nothing I had ever felt before.”  Craig tries to fall back on his Zen practice of controlled breathing and meditation and getting “under” the pain.  But “The hurricane sweeps over me . . . I reach for my place of peace.  The tube pressed into my lungs denies me that control.  The fire burns hotter, mocking my attempts to dive under it. . .   I reach for the center, and am swept away by the storm.  Sometime later I came out the other side. . .  [3-4 days later]  after the breathing tube had been removed, a nurse leaned over and asked if there was anything I needed.  All I could say, was ‘hope…’ “

In July and August, Craig’s postings are focused on what he calls “dark thoughts” and brokenness and death.  “We all think about our futures every day.  It is only natural, but never in my wildest dreams had I imagined myself to be in this condition.  How could I have?  So there I was.  The man with no future.  If I could even be called a man.  If I could even be called Craig.  A thing with scant identity, stumbling forward . . .”  

And then, “Friends and family became the life preserver keeping my head above water.  Even if I could not see myself in the future yet, I knew that those people would be there. . . As the physical pain reduced, and the medications were in turn reduced, the fog in my brain went on its way.  I started to see not just what I had lost, but also what still remained.  My family was still there. My friends were still there.  I still had my mind.  As I thought more about these things, I thought less about being broken. . . Hello anger.  Hello fear.  Out you go.  Hello love.  Hello compassion.  Make yourselves comfortable.  Stay a while.”  

The “rehab” unit presents new challenges.  On one level, we therapists know this, but Craig writes so clearly about the push and pull of what goes on there.  “Waking up on the rehab unit, all of my needs are met. . . But as time passes there, there is no realization of what I can do, only of what I can’t . . .  Each day brings a new discovery that something else is missing . . . Any conversation, or phrase, or word can show me something new that I’m no longer capable of. . . When everyone else sees me slowly coming back to life, I feel like I’m slowly dying . . . For me there is no normal to return to, only a future that I do not yet have the strength to contemplate.” 

During these months in rehab, Craig writes about his lifelong love of music and the instruments he has played — piano, trumpet, and, in the last few years, guitar.  “Over the weeks I have been watching my calluses fade.  Long hours spent enthralled had toughened my fingertips, but now they are soft again. . . In my room at home, my guitar gently weeps.”   In his mind, he writes a song; the words of a repeating refrain are,

Sleep now sleep
Don’t begrudge me
Sleep now sleep
And dream that I am whole

Later in August, he writes about his “visceral fear” of the words “I am paralyzed.”  “A loss unlike any other.  Take my nose.  Take my ears.  Take my tongue.  Take my eyes.  Anything but this.”  And further down in the posting, “Touch.  I have lost touch.  I have lost connection. . . The world goes by in front of me, just behind the glass.  I am the fish in the fish bowl. . . There are times when I look into the future.  I see that I will never feel, beneath my fingers, the warmth of the woman that I love.  In those moments, I feel so very lonely.”  

A year later, in August of 2012, Craig writes, “I have now spent a year out of the hospital.  When I first started writing, the story poured out of me. . . [Now] I find that I’m trying to relate an experience that continues to evolve each day.”   And on December 23, 2012, just this past month, Craig Schuff writes, “I can report I have completed my MS in nuclear engineering.  With that out of the way I am pushing ever forward on my dissertation.” 

In his December 23 posting, Craig also writes, “I would like to encourage any new readers to start reading from the beginning and then reading the other posts in the order they were written.”  This advice holds for all of you who are drawn to read Craig’s blog — whether to deepen your own understandings of this life experience, to offer your students this singular expression of life and disability as a learning tool, or simply to marvel at this man’s ability to articulate his inner life in such a compelling yet eloquent manner.  Craig’s blog is a deeply personal document.  To have access to his life in this way is indeed a gift.

A Word in Your Ear . . . JARGON

The paragraph just below is a description of procedures to be followed in an upcoming  local tournament. The tournament is for players of a specific game — one that I have been playing since I was a teenager.  I got back to this game big time after retirement.  Here is the paragraph:

Planned pairing method is groups of 4, double round robin, with a king of the hill final round.  Should the number of players not be divisible by 4, some groups may have 6 players.  Those groups will play a round robin, a round of swiss, and a final king of the hill round.  Gibsonization applies in final round only.***

Does anyone have any idea what game the paragraph is describing?!

This paragraph (taken verbatim from an e-mail) is a wonderful example of the colorful but incomprehensible language — jargon — that almost invariably develops in connection with  specific daily occupations engaged in by groups of individuals.  The dictionary defines jargon as:  “The technical or secret vocabulary of a science, art, trade, sect, profession, or other special group; a lingo.”  The jargon in the paragraph above is part of the tournament information sent out to a “special group” of people who belong to a club dedicated to playing this game.

In occupational therapy and occupational science, we, too, have a technical or secret vocabulary.  To begin with, our very name contains a ‘secret’ word:  occupation.  To us, the word has a particular meaning, specific to the professional group we belong to, often not understood by people outside the profession.  In Chapter 2 in my book, I review the struggle that has occurred over the years to come up with a definition of occupation that is satisfactory — even temporarily — to all in the profession.  Over and over again in my professional life I have had to explain that the “occupation” in our name does not refer to job training.  Such is the nature of professional jargon and its “secret” meanings.

In the main, the jargon we use in our clinical practice, education and research serves as a good tool for communication within our groups of colleagues.  In fact, one could say that in our academic programs much of our time and energy is devoted to helping students learn the lingo in preparation for later experiences in practice.  But in most areas of practice,  we are also challenged at times to put the jargon aside in order to be effective professionals.

Two examples:

1.  In our classrooms, we purposely foster teaching and learning processes that incorporate our jargon into the educational experience.  Alternatively, in our clinical practice with patients and clients, we often find we need to translate our communications back into everyday language to foster understanding and positive outcomes.  This need to use everyday language exists across the entire therapeutic process:  as we carry out our assessment procedures; in our ongoing conversations with clients, caregivers and families; in our written instructional materials; and often in our written and oral communications with other professionals.

I well remember being sent “back to the drawing board” by the chief of rheumatology to rework a handout on joint protection that I had drafted for patients in a rheumatology clinic; the handout was (correctly) declared too technical for the general patient population to understand or use.  To communicate technical information and guidelines for behaviors in an understandable format to the general public takes time and practice.  Do we teach these kinds of patient education skills to our students –in the classroom and on fieldwork?  Or do we focus only on making sure they understand and know the jargon, i.e. the secret vocabulary of the profession?

2.  One of the tenets of qualitative research is the mandate to stick with the participant’s own language when transcribing, analyzing and reporting on interview material.  Two terms are used to describe narrative  data:  emic refers to the research participant’s own words and perspectives; and etic refers to those of the researcher [I know — more jargon].  Not translating the participants’ words into professional jargon is extremely important in qualitative research, based on the belief that any such translation changes not only the words per se but also the intended meanings of the words.  In clinical practice, it is equally important to avoid translation of the patient’s words into occupational therapy lingo.

So, if I, as the researcher or clinician, translate the family caregiver’s statement that the patient “can’t move his arm very well”  to my own statement that the patient has lost “range of motion in the elbow joint of his right upper extremity”, I have hugely medicalized the caregiver’s statement and, in effect, removed the caregiver’s lived experience from the interview data.  I have  reduced the stated experience to a particular measurable loss in a particular joint of a particular arm and have removed the caregiver’s statement of how the arm is experienced in daily life.  Plus, perhaps without realizing it, the translation sends a tacit message to the caregiver that the words he or she originally used are not quite accurate or appropriate, that they need to be translated to be more correct.

In the handout on joint protection referred to above, I can imagine that, at the time, I had worked on that first draft to purposely incorporate medically correct terms into the materials.  Being asked to reconsider the content as it related to the intended audience was a learning experience — one that proved useful to me time and again in my subsequent practice.

***Scrabble!