Losing touch : a man without his body

201 Pages·2016·13.13 MB·English

by  Cole

LOSING TOUCH

JONATHAN COLE
LOSING   TOUCH
A Man Without his Body
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To colleagues, for their curiosity and friendship

ACKNOWLEDGEMENTS
This book is about how we can understand living with the loss of cutaneous
touch and movement/ position sense or proprioception, which happened to Ian
Waterman when he was 19, 45 years ago now. The answers come both from scien-
tific experiment and from a more personal, first- person biographical exploration of
how Ian has managed.
The book covers around 30 years of research with Ian, and throughout that
period he has consented to experiments, involving varying degrees of intrusion,
boredom, pain, and pleasure, with enthusiasm and curiosity. More than that, he has
become an expert in neuroscience himself, often knowing as much or more than
the scientists he meets about how to design a good experiment. He has also put up
with decades of questions from intrigued scientists about how he does so and so
and what he feels about that, with grace and humor.
In parallel with our scientific experiments, he has also been prepared to explore
and make available his personal experiences and reflections about living for so long
without the sensations from his body that almost everyone else takes for granted.
Only by his own, first- person, reflections do we gain another level of understanding.
And this has come from conversations over many years between us, at our homes
and on the road as we ourselves went from being young men, through middle age,
to being grandparents. In addition to these we have also sat in more directed ses-
sions at Ian’s home going through his life and views on science and scientists over
many days and weeks during the last few years.
So, my first and most important acknowledgment and thanks go to Ian for en-
gaging with science, and for allowing his biographical details to be mingled with
his reflections on living without touch and proprioception. Thanks also for his
company over many years and for trusting me with both the science and with his
biography.
I occasionally act as a medical opinion for Ian; he is the subject of experiments
I develop or arrange and am involved in, I have become his biographer and am his
friend. It is my hope that we have managed to separate these, and that my present
role is as an independent observer and chronicler, off- camera, audio- recorder to
hand. We are both quite clear that the science has to be done objectively, though
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Acknowledgements
that objectivity includes Ian’s observations of his methods and bodily response.
When considering his first- person experiences, and how much personal detail he
wants to divulge, the line might be difficult to draw since the illness has reached
into many parts of his life. But he has controlled the content throughout.
Much of the biographical material in this book was discussed at Ian’s house in
Dorset, assisted by his wife, Brenda. It is a pleasure to thank her for her support, for
acting as Ian’s PA during research trips, and for her constant supply of tea, cakes,
lunches, and common sense.
Research papers reflect ideas and hunches and reveal results, concepts, and pre-
dictions; what is not apparent is that science is a human endeavor, and like all en-
deavors there are periods of frustration, of boredom, as well as of elation. People do
research because they are intrigued and curious, a wonderful mind set both to be in
and to see in others. It has therefore been a privilege, and hugely enjoyable, to have
been involved in, and stimulated by, research with Ian in a number of labs over the
years. A visit to a lab is not just about science, we have received kindness and con-
sideration everywhere we have been and enjoyed times in the bar after experiments
and day excursions fitted in round experiments to fascinating places. Thanks are
due to a huge number of clinicians and scientists, philosophers and psychologists,
as well as those in theater, television, and choreography.
Our first research in Southampton was with Haider Katifi, Malcolm Burnett, Mike
Sedgwick, and Louis Merton. At Laval in Quebec the team who had done months of
planning to make the visits such a success included Chantal Bard, Michelle Fleury,
Yves Lamarre, Normand Teasdale, Jean Blouin, Yves Lajoie, and Jacques Paillard,
while in Marseille we worked with Gabriel Gauthier, Jean- Louis Vercher, Olivier
Guedon, and Magali Billon. More recently we have also collaborated there with
Fabrice Sarlegna, Hannah Lefumat, Frank Buloup, Lionel Bringoux, and Christophe
Bourdin, and with Gavin Buckingham then in Edinburgh. In Seeweisen, Germany,
thanks are due to Horst Mittelstaedt and in Hamburg (then) Rolf- Detlef Treede.
From University College London thanks are due to Patrick Haggard, John
Rothwell, and Brian Day for several projects over many years and to Flavia Mancini,
Gian Domenico Iannetti, Nada Yousif, Joern Diedrichsen, Richard Fitzpatrick, and
Billy Luu. Another long- term collaborator has been Chris Miall in Birmingham
with mention also to Daniela Balslev.
Investigation of affective touch centered on Goteborg thanks to Håkan Olausson
and Francis McGlone (from Liverpool John Moores University), together with Åke
Vallbo, Catherine Bushnell, Mikael Elam, and Jaquette Liljencrantz. Further work
followed in Helsinki with Gina Caetano and Riita Hari. Work on affective proprio-
ception was written with Barbara Montero from New York.
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Acknowledgements
In the early 1990s I was invited by Tony Marcel to a week- long seminar on
neuroscience and philosophy in King’s College, Cambridge, and there I met a
phenomenologist, Shaun Gallagher. Through him I have also met others inter-
ested in what might be called the first- person approach, including Dan Zahavi
in Copenhagen. I thank both for many fruitful discussions over the years. It
was through Shaun that our research on gesture with David McNeill was initi-
ated, and through David we also worked with Liesbet Quaeghebeur and Susan
Duncan.
We made several visits to the Max Planck Institute, which was then in Munich. It
is a pleasure to thank Simone Bosbach- Schulz, Wolfgang Prinz, Günther Knoblich,
Prisca Stenneken, and Gisa Aschersleben. Similarly thanks to Joachim Hermsdörfer,
Dennis Nowak, and their team from Munich, Arjan ter Horst, Rob van Lier, and Bert
Steenbergen from Nijmegen, the Netherlands, Richard af Klint, Jens Bo Nielsen,
Thomas Sinkjær, and Michael Grey in Aalborg, Denmark and, in Lyon, Pierre
Fourneret and Marc Jeannerod. The absence of many of these names and the work
done with them from Losing Touch does not reflect the quality of their science with
Ian. It was simply that these visits did not illuminate Ian’s scientific biographical de-
velopment the way other trips did. Inevitably some work has not made it to finished
papers, despite its importance. Thanks are due to Jim Lackner and Paul DiZio at
Brandeis University in Boston for their work in relation to microgravity, to the late
Abe Guz, together with Kevin Murphy, at Imperial College London, for work on the
perception of breathing, and to Bal Athwal, Daniel Wolpert, Christopher Frith, and
Richard Frakowiak, all then at University College London, for PET studies.
The shoots to make the BBC Horizon documentary were made by the team of
Chris Rawlence, Emma Crichton- Miller, Sophie Weitzman, Chris Morphet, and
Trevor Hotz. At times uncovering Ian’s early period with the illness was diffi-
cult, but their good humor and support made it rewarding for Ian as well as— it
is hoped— for viewers. Parts of the filming were facilitated by Marsha Ivins, (ex-
NASA) and it is a pleasure to thank her for her support and encouragement. Ian’s
two portrayals in theater, parts of L’Homme Qui and The Valley of Astonishment were
by David Bennent, Bruce Myers, and Marcello Magni. Thanks, above all, though for
these to Peter Brook and Marie- Hélène Estienne. I am also grateful to Bloomsbury
Methuen Drama for permission to quote from The Man Who. In choreography we
have had the pleasure of working with Siobhan Davies and Matthias Sperling. Both
these projects overlapped with work with Oliver Sacks. He was a mentor and friend
for longer than I have known Ian, since I studied with him as a medical student
in the mid-1970s, and his death in August 2015 robbed us of his unique curiosity,
eloquence, and humanity.
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