“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.

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