Chasing Tourette’s: Time, Freedom, and the Missing Self

268 Pages·2023·2.912 MB·English

by  Lisa Curtis-Wendlandt

Philosophy and Medicine P&M
Lisa Curtis-Wendlandt
Chasing Tourette’s:
Time, Freedom, and
the Missing Self
Philosophy and Medicine
Founding Editors
H. Tristram Engelhardt Jr.
Stuart F. Spicker
Volume 145
Series Editors
Søren Holm, The University of Manchester, Manchester, UK
Lisa M. Rasmussen, UNC Charlotte, Charlotte, USA
Editorial Board Members
George Agich, National University of Singapore, Singapore, Singapore
Bob Baker, Union College, Schenectady, NY, USA
Jeffrey Bishop, Saint Louis University, St. Louis, USA
Ana Borovecki, University of Zagreb, Zagreb, Croatia
Ruiping Fan, City University of Hong Kong, Kowloon, Hong Kong
Volnei Garrafa, International Center for Bioethics and Humanities,
University of Brasília, Brasília, Brazil
D. Micah Hester, University of Arkansas for Medical Sciences,
Little Rock, AR, USA
Bjørn Hofmann, Norwegian University of Science and Technology,
Gjøvik, Norway
Ana Iltis, Wake Forest University, Winston-Salem, NC, USA
John Lantos, Childrens’ Mercy, Kansas City, MO, USA
Chris Tollefsen, University of South Carolina, Columbia, USA
Dr Teck Chuan Voo, Centre for Biomedical Ethics, Yong Loo Lin School
of Medicine, National University of Singapore, Singapore, Singapore
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Lisa Curtis-Wendlandt
Chasing Tourette’s:
Time, Freedom,
and the Missing Self
Lisa Curtis-Wendlandt
Murdoch Children’s Research Institute
Royal Children’s Hospital
Parkville, VIC, Australia
ISSN 0376-7418 ISSN 2215-0080 (electronic)
Philosophy and Medicine
ISBN 978-3-031-19103-9 ISBN 978-3-031-19104-6 (eBook)
https://doi.org/10.1007/978-3-031-19104-6
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For Ray
Acknowledgments
This book was conceived before and written during the global SARS-CoV-2 pan-
demic, which saw me tucked away at home in Melbourne, Australia, a city with one
of the highest number of days spent in hard ‘lockdown’ globally.
Many people have supported me in writing this book. I’d like to begin by
acknowledging the Tourette Syndrome Association of Australia (TSAA) and the
many families and individuals affected by Tourette’s which I have met over the
years. Connecting with them at a time of confusion following our son’s diagnosis in
2015 has helped me tremendously in coming to terms with the experiences that
were unfolding for our family.
I thank Daryl Efron for taking an interest in my early notes on this manuscript,
and for inviting me to join the Murdoch Children’s Research Institute as an Honorary
Fellow in late 2018. His encouragement and mentorship played an important role in
my ‘reimagining’ life as a researcher after many years outside the academic sector.
The same holds true for Jack Reynolds, who I thank for his invaluable feedback on
the chapters of this book, and for seeing the relevance of philosophy to a life with
Tourette Syndrome and vice versa. I credit Dirk Baltzly for helping me to see that
my position on the margins of academia is not one of disadvantage. His certainty
that I could write this book left no room for doubt, and his envy at my freedom on
the fringes provided much food for thought about the fraught nature of academic
jobs in a hyper-competitive system that still lacks gender equity across its
many fields.
On that note, I thank the many women (and some men) in academia who I have
coached through my business Mind Your Way (mindyourway.com.au) over the last
decade, and who have allowed me to witness the ups and downs of academic life. A
special thank-you goes to my former colleague Jacquie Broad and also to Amelia
Liu, whose career paths show that being ‘on the other side’ – i.e., outside academia
and with no research funding – for a period of time need not curtail one’s scholarly
pursuits. They kept writing and researching in their own spare time, and so I knew
it could be done. I am similarly grateful to Nicola Markus for modelling a success-
ful freelance life and for upholding the values that made her embrace this life in the
vii
viii Acknowledgments
first place. I owe her my sincere thanks for providing editorial feedback and encour-
agement during the final pre-submission phase of writing this book.
Thanks also to Deakin University for granting a Science and Society Network
grant for a pilot project led by Tim Silk, and to Jack Reynolds and Tim Silk for invit-
ing me onto the investigator team. The unpublished interview data from this pilot
has been used in some chapters of this book. A special word of thanks goes out to
Ivan Mathieson for his outstanding work with our son Ray at a time when the latter
really wanted to gain some control over his tics. Those CBIT (Comprehensive
Behavioural Interventions for Tics) sessions were challenging, but they helped Ray
regain confidence and notably improved his well-being.
I conclude with a note of gratitude to my family. A big thank-you to my parents
for instilling in me both a deep curiosity about the world and a profound love of
learning. My mother’s library still houses the most interesting collection of books I
will ever encounter, and my father’s will to turn thought into word and word into
deed has rubbed off as a credo. Last but not least, I thank my husband and son for
making this extraordinary time spent in Melbourne’s lockdown such a tolerable one
at home together. Jim, for his unwavering support of my flights of fancy (such as
this book), and for the freedom and respect that characterise our relationship. Ray,
for his resilience during all these months in home schooling – it is the same resil-
ience that I have seen him bring to his life with Tourette syndrome. This book would
not have been written without Ray, and I dedicate it to him.
Melbourne
27 September 2021
Contents
1 Introduction: First Crossings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
2 Clock Time and Tic Nosology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
2.1 A Slippery Explanandum . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
2.1.1 Tourette’s in DSM-5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
2.1.2 Timeless Tokens . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
2.2 M asking Change. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
2.2.1 Chronicity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
2.2.2 Ontological Transmutations . . . . . . . . . . . . . . . . . . . . . . . . . 21
2.2.3 Transience, Remission, and Tic-Free Time . . . . . . . . . . . . . 24
2.3 T he Future of Time and Tics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
3 Volition in the Ticcing Brain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
3.1 Taking Stock of the Contemporary Debate . . . . . . . . . . . . . . . . . . . 35
3.1.1 A Potpourri of Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
3.1.2 Volition and Motor Control . . . . . . . . . . . . . . . . . . . . . . . . . 38
3.1.3 Philosophical Tensions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
3.2 L ibet’s Heritage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43
3.2.1 Readiness Potential or Not? . . . . . . . . . . . . . . . . . . . . . . . . . 43
3.2.2 The Vetoing Window . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
3.2.3 Suppressibility Remains Elusive . . . . . . . . . . . . . . . . . . . . . 49
3.3 C onsciousness Reconsidered . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51
3.3.1 T o Feel or Not to Feel, That is the Question . . . . . . . . . . . . 51
3.3.2 A Note from Sartre. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57
4 Freedom in a Tourettic World . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63
4.1 Critiquing the Dominant View: Are We Getting at Freedom? . . . . . 63
4.1.1 M inds Bent Upon Larger Purposes . . . . . . . . . . . . . . . . . . . 63
4.1.2 Three Types of Intentions . . . . . . . . . . . . . . . . . . . . . . . . . . 66
ix
x Contents
4.2 A cting Freely . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69
4.2.1 T he Trouble with Too Much Control: Disrupting
Skilled Habits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69
4.2.2 Q uality of Life as Freedom in Action . . . . . . . . . . . . . . . . . 72
4.2.3 Four Scenarios: Interactions Between Tics
and Other Intentional Actions . . . . . . . . . . . . . . . . . . . . . . . 76
4.3 On the Therapeutic Use of Consciousness . . . . . . . . . . . . . . . . . . . . 80
4.3.1 Bottom-Up or Top-Down . . . . . . . . . . . . . . . . . . . . . . . . . . . 80
4.3.2 L osing Autopilot: Modes of Being in the World . . . . . . . . . 82
4.4 A cceptance and Reappraisal . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87
4.4.1 Can Distal Intentions Alter Tic Expression? . . . . . . . . . . . . 87
4.4.2 Affective Valence and Agency . . . . . . . . . . . . . . . . . . . . . . . 91
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93
5 Agency and Ownership in Tic Disorders . . . . . . . . . . . . . . . . . . . . . . . 99
5.1 W hat Experience, Please? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99
5.1.1 Volition-as-Experience and Volition-as-Ability . . . . . . . . . . 99
5.1.2 Pablo’s Eye-Blinking Tic (Again) . . . . . . . . . . . . . . . . . . . . 103
5.2 A Complex Pair: Multiple Aspects of Agency and Ownership . . . . 106
5.2.1 Defining the Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106
5.2.2 ‘ Not Mine’ or ‘Not Me’? Understanding Alienation . . . . . . 110
5.3 S ituating Tics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 115
5.3.1 M ore Susceptible to Illusions of Agency . . . . . . . . . . . . . . . 115
5.3.2 L ess Susceptible: The Rubber Hand Illusion . . . . . . . . . . . . 118
5.3.3 Sense–Attribution Mismatch: Contrasting Schizophrenia
and TS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 122
5.3.4 R eturning to the Narrative Scale: ‘Who’s Making
that Noise?’ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 126
5.4 Toward a Psychopathology of Tic Disorders . . . . . . . . . . . . . . . . . . 128
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132
6 Tics as Intentional Actions: A Revised Taxonomy . . . . . . . . . . . . . . . . 137
6.1 T he Trouble with Unintendedness . . . . . . . . . . . . . . . . . . . . . . . . . . 137
6.1.1 I ntentional Is Not Voluntary Is Not Free . . . . . . . . . . . . . . . 137
6.1.2 E nactive Spillage and Normative Load:
When Things Happen Anyhow . . . . . . . . . . . . . . . . . . . . . . 143
6.1.3 The Intention-Action-Outcome Triad:
Four Match-Mismatch Scenarios . . . . . . . . . . . . . . . . . . . . . 148
6.1.4 Nonintentional Actions Revisited . . . . . . . . . . . . . . . . . . . . 153
6.2 T esting Our Taxonomy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155
6.2.1 Challenging Dichotomies. . . . . . . . . . . . . . . . . . . . . . . . . . . 155
6.2.2 A Tic for Every Category? . . . . . . . . . . . . . . . . . . . . . . . . . . 160
6.2.3 N ot Just Right Experiences (NJRE) . . . . . . . . . . . . . . . . . . . 165
6.2.4 Tics as Nonintentional Actions . . . . . . . . . . . . . . . . . . . . . . 167
6.3 Honouring Complexity: Tics as ‘Action (Pheno)Types’ . . . . . . . . . 169
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 173