Fallen: A Trauma, a Marriage, and the Transformative Power of Music (34 page)

Several holistic health practitioners—Baelay, Orianne, Marianne, Sara, and, in particular, Mary Boulding—have played a pivotal role in Simon’s continuing recovery. Mary is a herbalist and shiatsu practitioner; while Simon was in the hospital and rehab, she volunteered to travel once a week to the city, where she would give Eli and me guerrilla shiatsu treatments wherever possible: in a hotel room, on the grass in a park, sitting in a cafeteria chair. She noted, when treating Simon, how strongly his qi, (or energy flow, in eastern medicine), moved through his unmoving, unfeeling legs, and she was a passionate advocate for patience when healing.

In rehab, Simon’s new, altered body was alarming, and there was a great deal of fear in knowing, or not knowing, how it could be touched or moved without causing further harm. It takes no great leap of imagination or empathy to understand how it would be possible for a survivor of such catastrophic injuries to want to disconnect and disown a body that was no longer fully functional. To want, as Matthew Sanford articulates in his beautiful memoir,
Waking,
to be disembodied, simply a floating head and shoulders, with relatively little connection to a body that has (by being vulnerable, fragile, mortal, and in pain) betrayed you. But, at that critical moment, we were blessed with Mary. Mary guided Eli and me in simple hands-on shiatsu techniques that we could use to help Simon, a small act but a huge step forward for all three of us in reconnecting with and welcoming Simon’s physical body back to daily life.

Mary also brought the considerable power of her combined scientific and intuitive understanding in creating teas, tinctures, formulas, and broths to aid in rebuilding Simon’s overall health. The formulas she prepared for me were pivotal in helping me get sleep when I needed to stay grounded, focused, and healthy. In my opinion, Mary is a shining example of what the term “holistic medicine” means, the strength it provides; her healing approach, to the whole body and to the whole family, was a critical factor in supporting Simon, Eli, and me in staying connected within ourselves and to each other.

The role WorkSafe
BC
has played in helping our family navigate our small personal crisis is also not fully fleshed out in this memoir. I know people do not always feel heard and supported by large government institutions, and it is these examples, when people fall through the bureaucratic cracks and do not receive the compensation they need or feel they deserve, that usually command the most public attention. But it is also important to acknowledge when a system in place does not fail, when it does exactly what it is mandated to do. In our case, that is what happened. While WorkSafe
BC
’s financial support has been paramount in maintaining our domestic stability, its support has gone much further. WorkSafe
BC
provides medical, vocational, recreational, and psychological support and has continued to champion Simon’s achievements throughout his recovery. Simon often jokes that he is a “ward” of WorkSafe
BC
, but when pressed he will tell you that under Special Care Services director Jennifer Leyen, with her holistic approach, his relationship with WorkSafe
BC
is one of future-building and empowerment.

LATE ONE NIGHT
when Simon was in the
ICU
, a nurse confided that he often struggled with the work he did. He told me that he often would question the value of the extraordinary measures that were taken in the
ICU
to delay what only fifty years ago would have been inevitable death. Where was the good in prolonging a life that had no hope for a meaningful recovery? Was it in fact more cruel than compassionate to save someone only to commit them, and their families, to an agonizingly extended death, their remaining days, however long, spent in hospital or hospice, navigating various infections and medical interventions? The implication was that Simon might well be one of these cases. At the time I was both relieved and shocked to hear my own horror-thoughts articulated in such a reasoned and professional manner. “But,” the nurse continued, “occasionally you spend days working with someone you are certain is hopeless”—again, the implication that this was the case with Simon—“and a few weeks later you meet them in the hospital hallways, awake and responsive, and then all of it feels very worthwhile.”

The story was told to inspire hope, and although hope for me at the time was too costly a luxury, it did make me feel marginally better. In the aftermath of Si’s accident and through the process of writing this book, I have come to better appreciate the kind of difficult decisions that are made daily—hourly—in the
ICU
. So, to those of you who took a leap of science (or a leap of faith in science), to the first responders and paramedics, the ER doctors, the surgeons, and the
ICU
staff, thank you. From our limited individual perspectives, and despite the ups and downs Simon has experienced in his continuing recovery, your efforts were magnificently, gloriously worth it.

ONE OF THE
most startling and breathtaking moments of this recovery for me was the day that Simon, newly emerging from his coma and still without spoken words, scribbled the phrase “A Blank Page for Eli.” This message resonated with me for several different reasons. First, it spoke of and connected to Simon’s thought process as a father. The purity and beauty of the thought still has the power to instantly bring me to tears. It is, really, what every parent longs to give their child, isn’t it? A blank page, a clean and unencumbered start, unknown and infinite possibility. This to me epitomizes the grace of Simon’s mind: that in the soupy, mushy, swirly, smudgy thought processes of a mind emerging from the deepest levels of unconsciousness, these were some of the first words, the first thoughts, that surfaced.

This message also resonated with me because, unbeknownst to Simon, it echoes the title of one of my favorite short stories, Isak Dinesen’s “The Blank Page,” which tells the story of an ancient and once illustrious order of Carmelite nuns who grow flax and weave it into fine linen in the Portuguese mountains. The fine linen is used to grace the wedding beds of the Portuguese nobility, after which a square of the linen bearing the bloodstain that attests to the bride’s virginity is returned to the convent, where it is framed, engraved with the name of a bride-princess, and hung upon a great wall. In the midst of this great wall hangs one frame engraved with no name, the linen unstained: a snowy white blank page. The thought of this story is that the most interesting, the most subversive stories often remain untold or reside in the silences of the unwritten page.

Although Simon has made some written contributions to the memoir, the final omission, the blank page of this story, is Simon’s own voice. I am lucky. I worked on this memoir literally side by side with Simon (in our separate offices) as he told his story with music: with chords, melodies, and rhythms. That is how he fills his snowy white blank page, and it was the companion soundtrack to the writing of this text. As we do in life, together the words and music form a more complete picture of the whole story. You can check his music out here:
http://www.stantonparadis.com/
.

THE SUPPORT REQUIRED
to write this book began long before I ever set word to page. There were, especially in the first year after Si’s accident, so many people that helped out in such profound ways that I had to, in the writing of the memoir, resist the urge to name them all—the cast of characters would have been too huge and unwieldy for any reader to keep track of. But they all deserve to be thanked by name. So, to Lynn Simmons, who delayed the start of a new job to hop on a plane and come live with Eli while he settled into grade eleven: thank you. To John, Colleen, Nate, Jonah, Terra, Cam, Drew, Josh, the Kaizers, and the Reeds (and anyone else who opened their home to Eli): thank you. To Barb and Jer, for holding open the Chez Paradis doors in North Vancouver, and to Lia, for her valiance, unyielding friendship, historical fine-tuning, and general awesomeness: thank you. To Steve and Nikki, for, specifically, the generous loan of the Cardero attic haven while Simon was at
GF
and the architectural designs for our new accessible living space, and for, more generally, the compassion, intelligence, and artistry you bring to everyday life: thank you.

To Sylvain Brochu, my dance and yoga teacher, whose potent image of a canoe has floated me through many difficult moments of my life: thank you. To my dear friend Rachel Rose: thank you. Rachel is a writer of such depth and scope that her words have reached out and, like the image of the canoe, guided me through unknown and uncharted waters both during the days and nights in the
ICU
and, later, when she, my writing cohort, midwifed me through the first and most challenging draft of this memoir. To Guido, Sari, and Nadia, the family we choose: thank you. To our extended musical family both pre- and post- accident—Sue L., Sue P., Cam, Patricia, Pat, Kristi, Loewen, Al, Julie, Susann, Ray, Ron and the Garden Bay Pub crew, Joe, Amy, Amanda, Katherine D., David J. T., Karen G., Tom, Jay, and, of course, Sully, Gerry, and Joe—who have and continue to do so much to fill our family life with song: thank you.

To Dave and Lou and the skilled members of the construction crew that worked on our house, many of whom donated supplies and their precious time: thank you for turning an average space into something exceptional.

Over the course of the last six years we have met too many wonderful and supportive health care professionals to list here, but they all deserve thanks for the good work they do. A special thanks to Dr. Jaschinski, our compassionate, considerate, and highly esteemed
GP
.

There are so many more I could mention by name, but I hope they will forgive me when I include them all in a general, but deeply heartfelt, thank-you to the Sunshine Coast. We are blessed to live in a place so connected and vibrant and so committed to the concept of community. I could call any number of people at 2:00 a.m. in an emergency and they would come, unquestioningly. This is a human gift that, especially in these days of distance and technology, I do not hold lightly.

To Logan, Natalia, Jason and the wonderful John Overell: thank you for sharing such a pivotal part of our journey with us. It is an honor to know you all.

My wonderful agent, Carolyn Swayze, and all the talented folks at Greystone who believed in the idea of this book enough to make it a reality: Thank you!

And, finally, to the beloved members of the Paradis, Fowlie, and Stanley families, I raise my cup and make a toast: You all teach me what family can and should be. Thank you. And to my mother, Kathryn Stanley, a special kind of gratitude: Mom, you taught me all I know about living with an open heart. I owe you my life.

EPIGRAPH
We need only view

Niels Stensen,
Discours sur l’Anatomie du Cerveau,
in Stanley Finger,
Origins of Neuroscience: A History of Explorations into Brain Function
(New York: Oxford University Press, 1994), p. 24.

7-8
The study followed ninety-nine patients

Joan Didion,
The Year of Magical Thinking
(New York: Alfred A. Knopf, 2005), pp. 94–95.

9-11
Chapter Two: A Hungry Beast

Norman Doidge,
The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science
(New York: Viking Penguin, 2007), p. 290; Mark T. Nielsen and Gerard J. Tortora,
Principles of Human Anatomy,
11th edition (Hoboken, NJ: Wiley, 2007), pp. 612, 613, 616–617; Trevor Powell,
Head Injury: A Practical Guide
(London: Speechmark, 2007), 19–20; Alla A. Vein and Marion L.C. Maat-Schieman, “Famous Russian brains: Historical attempts to understand intelligence,”
Brain,
131 (2008): 583–90, doi:
10.1093/brain/awm326
. Powell’s
Head Injury,
a very helpful resource book, provides an excellent overview of the internal cerebral process following a head injury as well as a chart which outlines the criteria used to rate patients on the Glasgow Coma Scale.

9
humans have the highest brain-to-body-mass ratio

Mice have a comparable brain-to-body-mass ratio while some insects and birds have an even higher ratio than humans. As an estimate of intelligence the brain-to-body-mass ratio is not particularly accurate. The E.Q., or Encephalization Quotient, is a more refined measurement of intelligence and here, humans, of all the mammals, are at the head of the pack.

10
This living tissue comprises roughly
100
billion neurons

For many years the estimated number of neurons in the brain has been 100 billion. A 2009 study suggests that this number might be closer to 86 billion. Azevedo FAC, Carvahalho LRB, Grinberg LT, Farfel JM, Ferretti REL, Leite REP, Jacob Filho W., Lent R., Herculano-Houzel S., “Equal numbers of neuronal and nonneuronal cells make the human brain an isometrically scaled-up primate brain,” J Comp Neurol 513 (2009): 532-541.

16
Sometimes it’s coming up roses

Joe Stanton, “Sometimes You Win,” Perf. The Precious Littles, S
ometimes You Win,
Bearwood Music, 2008.

21-25
Chapter Four:
STAT
Craniectomy

Finger,
Origins of Neuroscience,
pp. 4–6. A further exploration of trepanation can be found in the Geoff Bunn’s dynamic and fascinating BBC Radio 4 broadcast
The History of the Brain,
in the first segment, entitled “A Hole in the Head,” first broadcast November 2011 (see
http://www.bbc.co.uk/programmes/b017b1zd/episodes/guide
). See also James Cooper, Jeffrey V. Rosenfeld, Lynnette Murray, Yaseen M. Arabi, Andrew R. Davies, Paul D’Urso, et al. for the DECRA Trial Investigators and the Australian and New Zealand Intensive Care Society, “Decompressive craniectomy in diffuse traumatic brain injury,”
The New England Journal of Medicine,
364 (2011): 1493–1502, doi:
10.1056/NEJMoa102077
; Stephen Honeybul, Kwok M. Ho, Christopher R. P. Lind, and Grant R. Gillett, “Decompressive craniectomy for neurotrauma: The limitations of applying an outcome prediction model,” Acta Neurochirurgica: The European Journal of Neurosurgery, 152 (2010): 959–64, doi: 10.1007/s00701-010-0626-5; Vishal Kakar, Jabir Nagaria, and Peter John Kirkpatrick, “The current status of decompressive craniectomy,”
British Journal of Neurosurgery,
23, no. 2 (2009): 147–57, doi:10.1080/02688690902756702; Clemens M. Schirmer, Albert A . Ackil Jr., and Adel M. Malek, “Decompressive craniectomy,”
Neurocrit Care,
8 (2008): 456–70, doi: 10.1007/s12028-008-9082-y; and Graham Teasdale and Bryan Jennet, “Assessment of coma and impaired consciousness,” The Lancet, 304, no. 7872 (1974): 81–84, doi:10.1016/S0140-6736(74)91639-0.