this year I attended a surprise 40th birthday party for a good buddy
- the room was literally overflowing with 70 of his closest friends
and family. Each attendee, myself included, basked in his presence and
clamoured to demonstrate their affection for him: bearing gifts, singing
songs they had written about him, 'roasting' him for various shenanigans
he had pulled over the years, and congratulating him on his stunning
accomplishments thus far in life (my friend has plans to retire as a
very wealthy individual at the ripe old age of 42). At one point during
the festivities one well wishing individual, with high regard for my
friend and I, publicized her fervent hope that the future will bring
a cure for us both.
comments were geared at us both because my friend - the one who has
garnered such great success in terms of work, finance, friendship, family,
and volunteerism - also has Tourette Syndrome. As I absorbed this kind-hearted
wish on our behalf, I thought about my friend. My friend who has moulded
obsessive-compulsiveness into perfectionism in his work and policies,
thus ensuring product quality for his clients far superior to that of
his rivals. My friend who has harnessed his hyperactive energy, now
at his disposal to invest into long hard hours necessary for his varied
professional and personal commitments. My friend who turned his distractibility,
a potential liability, into an ability to multi-task, a formidable strength
in his line of work. My friend who, no matter who he is talking to or
how many people he is divided between, has the ability to make him/her
feel like (s)he is the most important person in the world. He positively
radiates intensity; the man is a virtual lightening rod for synergy,
and his genuine unbridled enthusiasm infects all who surround him. He
uplifts people simply by walking into a room, which is precisely why
that particular room on that particular day was teeming with so many
I thought about my many other friends with TS - to name just a few,
there is a nationally decorated postal worker, a published writer, another
CEO, a couple of award-winning teachers, students of law, medicine,
and business administration, and an automotive worker who has raised
thousands of dollars for charity. Finally I thought about the numerous
young people with TS I've met and the talents they each possessed. All
of this reflection prompted me to wonder: what exactly was it that we
all needed to be cured of?
am glad that I have Tourette Syndrome. Is this a ridiculous statement
to make? By many definitions of Tourette Syndrome the answer might be
yes. Not by mine.
I out of touch with how bad the symptoms and the reactions were or can
be? No. As I type this, coincidentally, I endure excruciating pain that
for weeks has hampered me due to a neck tic gone horribly awry. It has
necessitated considerable time off for treatment, it has reaped further
bills, and it is a poignant reminder of my doctor's warnings of early
arthritis should I not continually preventatively treat this body I
wear out at a dangerously faster pace than nature intended. I am also
acutely aware of various other health complications (hernias, detached
retinas) from which other adult TS'ers have suffered as their bodies,
wrenched and barraged for many years, start to senesce. No I do not
trivialize, ignore, or deny the negative of TS; you don't need to in
order to still value and live in the positive of TS.
positive of TS?? Am I deluding myself into believing that there are
things to be gained from Tourette? Should my yammerings be dismissed
as a man desperately trying to rationalize his permanent affliction
with an aberration? Again no. To believe this is also to do us both
account for both drawbacks AND benefits in my definition of TS. It is
crucially important to see the WHOLE picture, beyond simply those elements
of TS that have been packaged as symptomatology and labelled "disorder".
The experience of TS encompasses so much more than the negative. In
fact, the neurological disinhibition definitive of TS and its associated
conditions only becomes "good" or "bad" once we
people make those distinctions ourselves. And what we decide changes
over time, individual, and situation.
example, distractibility and a roving attention were very GOOD things
when humans lived as hunters and gatherers. They remain very good things
when you are employed in a job with many simultaneous demands. However
they become very bad things when you are expected to sit in a desk for
6 hours a day. Same neurology, but in one environment we want a medication
or a strategy to AMPLIFY it, and in one environment we want a medication
or a strategy to REDUCE it.
culture is obsessed with wellness and normalcy and so our psychiatric
manuals carefully catalogue and delineate only the things that are 'wrong'
in a person. This is not so in other cultures, and to assume that 'our'
way is the correct interpretation of behaviour is to be blinded by ethnocentricity.
The Sanussi of the Zulu culture in Africa, for example, consider TS
(known in their society as Isitutwane or 'the Disease of the Ant') to
be one of their seven 'Isifo Samathongo' (Diseases of the Gods). 'Victims'
of Isitutwane were customarily made chiefs, kings or healers and were
recognized more for the gifts of disinhibition - intellect and creative
vision - than the other by-products of disinhibition - tics and rituals.
It was only with the coming of Western ideas, says one Sanussi healer,
that 'a great ignorance fell upon our communities', leaving those with
Isitutwane to be ostracized and vilified.
is distractibility good or bad? It depends. Are the Zulu's right in
their perspective, or is North America? Neither interpretation is fully
right, and neither is wrong. Both are simply selective.
fully appreciate, understand, and embrace your TS you must recognize
it as the full quality of oneself that it is, with the potential to
be either a powerful ally or a crippling nemesis. It is important to
see how there is a balance to TS just as there is with every other characteristic
of yourself; only then do you truly begin to grasp the enormous control
YOU OWN over how you will live your life and how you will live your
time I'll talk about many of the positives disinhibition can offer,
and how you too can find yourself glad to have TS!