An Extraordinary Life
At the age of 19, Tom Nash contracted meningococcal
disease. This life-threatening condition caused severe septicemia (blood poisoning) necessitating the amputation of both his legs below the knee and both arms
through the elbow, and left him with severe tissue damage and scarring over
large parts of his body and face. Following a two-year period of painful
treatments, Nash rebuilt his life: first, by learning to walk on prosthetic
legs and use metal hooks instead of hands; and then, by forging a career as
first a DJ and event manager and then an international keynote speaker. His
life story is a testament to the human capacity for creative adaptability, and
it’s told with irreverent and occasionally savage humor in his book; Hook, Line, & Sinner: An Unexpected Memoir. And if I may be so bold, Nash personifies the Yahwistic blessing of “more life”.
But, surprisingly, he prefaces his account by cautioning the reader that his book is not intended to be an inspirational story. “It is not motivational literature… If you’ve picked this book from the shelf hoping for an uplifting dose of inspiration porn, or to be temporarily inspired by the achievements of a physically disabled person, I implore you to return it to the shelf.”
But, surprisingly, he prefaces his account by cautioning the reader that his book is not intended to be an inspirational story. “It is not motivational literature… If you’ve picked this book from the shelf hoping for an uplifting dose of inspiration porn, or to be temporarily inspired by the achievements of a physically disabled person, I implore you to return it to the shelf.”
As he quipped to an
interviewer, “Unless I’m inspiring people to lose their arms and legs
and become a DJ, I don't know what I would be inspiring people to do.”
Obviously, he’s not inviting readers to copy his daily routine—that would be
inadvisable even if he were able-bodied. He is no saint; the life he documents is full of smoking, drinking,
drug-taking, and partying. More importantly, we are discouraged from viewing
this as a sob story. You could—in theory—pity Nash for his extreme disability;
admire his heroic fortitude in remaining cheerful despite such obvious
misfortune; dismiss your own problems as trivial by comparison; reproach
yourself for complaining about them; and decide to be thankful for what you
have, given how much worse things could be. But that would indeed be a perverse
misreading of the book. And despite Nash’s disclaimer, only a reader can judge
whether a memoir is inspirational. And this one certainly is.
The book does not shy away from the horrific details
of his initial illness: the physical and psychological torture caused by coming
out of an artificial coma—an experience that has much in common with locked-in
syndrome; having to endure excruciating 3–5-hour daily dressing changes, at a
time when 80% of the skin on his body was an open wound; the agonizingly slow
and painful process of learning to walk on prosthetic legs. But even these
tales of horror are leavened with deliciously savage humor. The story of how
he heard the news that he would have to lose his arms, for example, is
presented as a comic skit:
“Well, you have two options.” [stated the consultant]
He glanced up to the ceiling, as though he was making the options up on the
spot. A long pause. Too long not to interrupt.
“What are they?”
He looked down again and stared straight at me. “Well,
we can amputate the arms. You will live with prosthetics. It's possible. Rare,
but possible.”
I didn't much like this option. I don't think I need
to explain why.
“And the other option?” I inquired hopefully.
“Well, you can keep the arms.”
“But…?”
I waited with bated breath.
“But you'll die.”
“At that moment, I actually chuckled. He was good at
tapping into my dark sense of humor, and I appreciated him doing so in order
to make his point. Don't get me wrong, the news was devastating. But if I
was going to lose my arms anyway, I'd rather have a good story to tell about
how that news was delivered.”
Not only is Nash’s story laced with humor but he also
displays a lack of self-absorption remarkable in any memoirist, but especially
in someone relating such devastating events. Even at those times when you might
imagine that Nash’s own situation would occupy his entire consciousness, he is
remarkably empathetic towards the people who surround him. He thinks often
about the physical effort it must have taken for his stepsister to lug him out
of his apartment, in the helpless, semi-conscious state of acute illness. He
jokes with the paramedic in the ambulance taking him to intensive
care—“figuring that awkward situations are best broken with humor”. He feels
for the nurses who had to change his dressings: “These procedures were hard on
everyone else as well. Many nurses didn’t have the constitution to inflict that
kind of pain, and understandably so. Some left the room in tears.” He is
especially keenly alive to the emotional ordeal his mother endured: “I always
maintain that, as tough as I found my situation, she had found herself in an
even worse one: watching her only son struggling to survive, constantly on the
brink of death.”
He is considerate even of the feelings of the
middle-aged woman who—mistaking him for an injured ex-serviceman—pays for his
coffee at a Manhattan café, in one of the book’s many comic anecdotes. It’s
worth quoting in full, to provide a taste of the combination of empathy and
mischievous humor that characterizes the memoir throughout:
A couple of tables down from us were a group of four
or five middle-aged women, well-dressed, with amiable expressions on their
faces. I noticed them glance at me more than once, but since I'd started
sporting hooks for hands, this was something I'd become accustomed to. One of
them went to the counter to pay their bill and, on her way back to her table,
brushed past me. She leant down and whispered into my ear, “Thank you for your
service.”
Confused, my first thought was, “I don't work here?”
She whisked herself away as quickly as she had
arrived. After a moment, I realized she thought I'd served in the military.
Feeling slightly awkward, my friend and I decided to
pay our bill and leave. But approaching the counter, we were informed that the
woman had paid for our coffees. This left me with quite the conundrum. Although
it was a lovely gesture, it was based on a misunderstanding. I was not a
soldier, and had not sacrificed anything for her country.
But there was no way I could handle the awkward
situation of telling her I wasn't who she thought I was. It seemed unnecessary
anyway—it's not like I could have paid for my own coffee and asked the waiter
to refund her.
I realized that all she wanted was to do something
nice for someone seemingly less fortunate than herself. Although I didn't
regard myself as less fortunate than her by any means, I began to imagine what
that conversation would have looked like, and it didn't end with a fuzzy
feeling for her.
The other option would have been simply to accept the
gift and effectively lie by omission, preserving her sense of altruism. Not to
mention—was I making assumptions about her? I believe she was genuine and doing
her best to be a good person and that any conversation between us about her
having made a false assumption would embarrass her in front of her friends. But
perhaps it didn't matter to her whether I'd served in the military.
This was all too much cognition over a fucking cup of
coffee.
There was only one way out. The best course of action
I could think of for everyone concerned.
As I was leaving the cafe for the chill of the
surrounding streets, I looked over to her table, gave a short, genuine nod, and
said, “Thank you for your service, ma'am.”
This compassion for other people’s problems is
probably the cause, in large part, of Nash’s own calm cheerfulness. Throughout
the book, Nash expresses his sense of responsibility to other people: both
professionally, as a DJ and event organizer (a “context creator,” as he dubs
himself), and in personal interactions, he tries to entertain people, to make
them laugh, to put them at ease. This obligation to reassure other people could
have been a subject for complaint. Instead, it is constantly presented as a positive.
“Having a disability”, he said in an interview, “you do have a sense of
responsibility to make sure that everyone is comfortable around you.” In the
book, this consciousness of what he owes others is even depicted as lifesaving.
Nash’s strong support network of friends and family, he writes, made him
determined to recover and thrive: it “imbued me with a sense of responsibility
and obligation to not let anyone down.”
Many disability activists and memoirists are keen to
emphasize what society should offer them—it should make allowances, provide
accommodations, value their contributions. These things are important.
As Nash acknowledges, his life would be very different if he didn’t live in
Australia, a country where he has received good medical care and continuing
support from the state’s national disability services. But in general,
there is strikingly little focus in the memoir on ways in which society could
make life easier for him. If anything, the focus is reversed.
This is partly because of Nash’s stoic approach. The
Stoic fork is a recurring theme in the book: “The distinction between what one
can and cannot control is an important one. It helps to shift our focus away
from what we must accept and towards what we can change.” The Stoic idea that we
can—and must—decide how to interpret the things that happen to us is, likewise,
central. There are very few moments in the memoir in which Nash sounds
genuinely infuriated at someone else’s attitude towards him. One of them is
when he is approached by an evangelical pastor, whose end game, as Nash puts
it, “was to hijack credit that rightfully belonged to the countless doctors,
nurses and other medical staff who in fact were responsible
for my survival.” When the pastor asks Nash if he has ever reflected on the
meaning of what happened to him, his response is fierce:
“I don't think anything happens for a reason. And to
be honest, I'm glad of that. If it was the case, it would rob me of the
opportunity to create my own reason for it. If I was ever going to draw meaning from what had happened to me, it was going
to be by learning to grow from it. Meaning was something that was my
responsibility. If I could find that meaning, nobody else could take credit for
it. Certainly not god.”
One of the main ways in which Nash creates that
meaning is by viewing the challenges presented by his disability as problems
that invite ingenious solutions. He decides against using specially adapted
appliances:
“As far as was possible, I avoided tailoring my
environment to my disability. There are certain adaptations out there
specifically for the less able: modified cutlery and crockery, light switches,
various alternative appliances. But I knew, somehow, that I wanted to use as
few of these as possible. The more I developed a reliance on these
modifications, the further I would imprison myself within their confines. My
problem-solving needed to be transferable; I had to be able to live regardless
of setting or situation. Rather than buying a modified kettle, I wanted to be
able to use any kettle. (Kettles are a fun place to start as mistakes are
punished with scalding-hot ramifications.)”
Throughout the book, Nash stresses the necessity of
adapting to the situations in which we find ourselves, rather than expecting
the world to meet our needs. “Using prosthetics,” he writes, “is a constant
exercise in adaptation.” This need to adapt could have been described as an
invisible additional burden on Nash, an energy-sapping requirement to put
thought into things that most people are able to do with unthinking ease. That
idea is the basis of spoon theory, a common trope among disability
activists, in which not having enough spoons is a metaphor for lacking the
mental and physical resources to fulfill some social or other obligation because
you are exhausted by the daily struggle of dealing with your disability.
Instead, Nash portrays the need to find new solutions as life-enriching because
it spurs creative innovation. “I like to reflect on what kind of advantages
I've come across while having a disability,” Nash said in one interview, “And I
think one of them is the ability to think differently when approaching
problems.”
When Nash details specific difficulties, he does it to
demonstrate how they were tackled and overcome. This is vividly illustrated in
the chapter titled “The Pin Factory,” in which he sets out to explore the
abandoned buildings scattered around Sydney’s dilapidated Prince Henry Hospital
in the company of a paraplegic former BMX rider who likes to perform daredevil
stunts with his wheelchair, a quadriplegic man who has lost all sensation in
his body, and a motley crew of other invalids. Part swashbuckling tale, part
farce, the story has strikingly cinematic qualities. What would be a mundane
stroll for able-bodied people becomes—precisely because of their disabilities—a
heroic adventure for those involved: a “triumph,” Nash calls it. It also
illustrates the advantages of being forced to approach things. They are able to
break out of an abandoned warehouse by using the accoutrements of their various
disabilities: Nash can traverse broken glass on his artificial legs without
risk of injury; his friend can break down a locked door by ramming it with his
wheelchair. The episode leaves him optimistic about the role disabled people
can play in society. He comments:
"Perhaps a narrow expertise could serve as an
advantage—a chance to hone our skills and become more proficient in something
otherwise untapped… I remember feeling confident that there could be a role for
all of us in the future—myself included."
Hook, Line and Sinner contains
no melancholy list of things that Nash is unable to manage unaided, no
dirge-like lament over all the freedoms able-bodied people take for granted.
From simple things like stepping up onto a curb or lighting a cigarette to
designing a slide guitar that he can play using his hooks (“an iterative
process of really shit engineering”), all difficulties are presented as spurs
to ingenuity. There are, of course, things Nash cannot do without
assistance—washing himself in the shower, for example, since his prosthetics
are not waterproof—or cannot do optimally (such as petting dogs, some of whom
are skittish about his hooks). Such things are either omitted from the memoir
altogether or—as in the hilarious consternation the prospect of his driving
causes at a car rental place—treated with his signature cantankerous humor.
As a disabled person, Nash argues, you must often
think laterally—quite literally in some cases, as when he realizes, through
trial and error, that the best way for him to tackle stairs is to turn his body
side-on. Nash is fascinated by the idea that disability promotes invention—that
when you set out to tackle a problem that the able-bodied don’t face, you can
end up creating new technology that everyone will find useful.
Closed captions, voice-to-text functionality, curb cut-outs—these, he points
out, were all designed with disabled people in mind but have proved universally
helpful. Something as simple as a lever door handle is crucial for a person
with hooks who can’t easily grasp a round handle (he has, he reports, been
locked in many nightclub toilet stalls), but the lever-handle design is also
“advantageous for able-bodied people to open with their elbow if they’re
holding a tray of lattes.”
This kind of attitude goes well beyond
resilience—which implies merely a passive capacity for enduring the blows of
fortune—and instead epitomizes Nassim Nicholas Taleb’s concept of antifragility:
the property of things, such as muscle, that actually grow stronger by being
placed under strain. Two early memories—being taught to swim and ride a
bicycle, in both cases by his father—are recalled at various key points in the
book to illustrate the idea that certain skills and insights can only be
achieved if people refuse to coddle you. Hands shaking with fear, the
eight-year-old Tom pleaded with his father not to let go of his bike. But his
father ignored him:
“He was a real bastard sometimes. Or so it felt in
moments like that. In hindsight, he was sacrificing a sliver of my trust in him
to force me into a situation I was not yet aware I could overcome. What I
didn't understand at the time was that moving forward at speed was exactly what
was going to maintain my balance. I was so myopic and fearful about falling
over, I was missing the point of the exercise.”
Swimming and cycling are two activities that you
cannot learn without a degree of boldness, without committing yourself to the
attempt. And sometimes you have to be forced to do so, if it’s not something
that you would choose for yourself. The same is true of relearning to walk as a
disabled person and learning to use hooks instead of hands. Being a quadruple
amputee is presented as an analogous experience: it will unlock certain
creative faculties because you have no option but to approach things differently.
“Once a decision is made to stay the course”, Nash writes, “a new future is
drafted to which you are fully committed. There is no going back.” The greater
the challenge, the more meaningful the achievement. As Nash puts it, “the deep
end is the best place to learn to swim.”
The book consistently emphasizes the importance of
agency. Nash not only has the courage not to become a Paralympian (as a
pull-quote on his book’s flyleaf wryly states), he also completely rejects the
“Oppression Olympics.” He encounters this toxic dynamic at an amputee support
group at which he was clearly intended to be the main attraction “For some”,
he reports, “this meeting was nothing more than running a spreadsheet to tally
their grievances and rank one another in terms of tragedy experienced. I found
this protocol abhorrent.”
Claiming a marginalized identity has become a common
political gesture. As Bradley Campbell and Jason Manning point out in their
2018 book The
Rise of Victimhood Culture, this is probably the most significant
change to have happened to sociopolitical attitudes over the past 20 years.
Victimhood is frequently seen as legitimating (it enables one to make demands
of society), enlightening (you can become a brave truth-teller whose experience
reveals how oppressive society really is), and ennobling (you’re one of the
moral oppressed ones, rather than one of the wicked oppressors). This
philosophy encourages people to wallow in self-pity, and feeling resentment
towards the more fortunate. Nash comments that if he had spent his time at
support groups, endlessly rehashing his misfortune and listening to other
people’s tales of woe, he, too, might have ended up “forever orbited by sorrow,
grievances and regret”. Instead, he has “found my place beyond grief”.
The typical gloom-fest confessional memoir often shows
you that, beneath the appearance of normality, there is deep suffering—a
traumatic childhood, memories of terrible abuse, psychological torment. Kat
Rosenfield has analyzed how such memoirs affect
the reader:
“Memoir offers all the enticing horror of sexual abuse,
of graphic violence while offering the upright reader plausible deniability.
He consumes these books not because he finds such things titillating but
because he cares. Audiences want to read about pain and suffering, abuse and
exploitation; you were supposed to feel bad for the people who had written
these books, while also feeling good about how bad you felt.”
Nash’s memoir tells the opposite story. In his case,
the marks of trauma—the hooks, the scarring, the prosthetic legs—are deceptive.
In fact, his life is happy and not because he is valiantly overcoming tragedy.
It simply doesn’t suck to be him.
This is perhaps why Nash refuses to see his book as an
inspirational memoir. Typically, works in that genre attempt to scold the
reader into cheerfulness. Your problems don’t matter, given the far
greater tragedies the world contains, they tell us. I doubt
that many people are truly convinced by this reasoning. Sorrow is not a
zero-sum game. Personally, seeing someone worse off than me may make me pity
them—but it neither solves my own problems nor eases my anxieties. If anything,
if I am unhappy, to hear of someone else’s suffering only saddens me further.
Nash writes: "There’s no competitive element to tragedy. My story
shouldn't guide how you feel about yourselves. You shouldn't feel inferior
because others have seemingly lost more than you. Your concerns are just that:
yours. What's important is how you deal with them."
Comparing yourself to others “can be pernicious,” he
points out. I would add that it can also stymie real compassion. Nash refuses
to tell his life story to the amputee support group because he suspects that
they want to use it to discount other people’s experiences as less deserving of
sympathy because they are less disabled. Instead of trying to understand other
people on their own terms, comparing oneself to others encourages one to use
them as a yardstick by which to measure one’s own happiness or sorrow, luck or
misfortune. It disregards the uniqueness of each individual’s experience. And
tends to result in either smugness or indulgent self-flagellation.
Of course, if you have a very visible disability, it
can be difficult to get people to see past that. You can face the soft bigotry
of low expectations. As in the Samuel Johnson quip about a woman preacher being
like a dog walking on its hind legs, a guy with hooks for hands might not DJ
well, but you wouldn’t expect to see him DJing at all. This attitude is vividly
illustrated in the book in a scene in which Nash, his DJ partner, Kris, and his
then girlfriend play a set at a club in Japan:
“Members of the crowd formed a queue just inside the
entrance to the club (typically not where queues are found) in order to get
photos with us. There must have been over thirty groups waiting patiently and
respectfully for their opportunity to get a selfie with these three aesthetic
anomalies. That was before the show had even started!
The fascination did not end there. Throughout our
entire set, a good portion of the crowd stood motionless, facing the DJ booth,
and took photos on their devices, gently bobbing their heads to the soundtrack
we were setting.”
As Nash admits, in this kind of situation, “other
people’s perception of you becomes your reality”. His uncertainty about how to
handle this mismatch between how people see him and how he would like them to
see him is signaled by the fact that whenever he broaches this topic in the
book, he switches from the confident authorial voice of narrative and
description to reported conversation. His extraordinary appearance will always
draw attention and his story will always evoke fascination. And many people will
respond with an uncomfortable mixture of pity and admiration. “Inspiration!”
one passer-by calls out to Nash; “You just made me feel so much better about
myself,” another stranger tells him, rather presumptuously.
He documents many encounters with people who view him
as inspirational because they feel that, in his situation, they would not have
been able to cope. In fact, he is hoping to convey a very different message:
that even problems that look extreme are amenable to solutions. He portrays
himself throughout as an everyman, not a superhero—if you went through the same
experiences, you might also be able to respond in the same way, he tells
readers. “What bothers me the most of all”, he confesses to a friend, “is that in some way, I inadvertently signal people's lack of
faith in themselves. Though, to be honest, at nineteen, before it happened, I
would have thought the same thing. That if I had to lose my hands, my legs—to
go through what I did? I wouldn't have had it in me. But if I'm to be an
example of anything, I'd rather it be the opposite of that. That you don't know
yourself well enough to say that you couldn't handle something. Nobody truly
knows what they're capable of until they're actually in that position.”
He's correct, of course, that it is impossible to
estimate one’s resilience to misfortune in advance. But there is an inevitable
tension implicit throughout the memoir: Nash tries to convince us that he is no
better equipped for life as a quadruple amputee than the average reader of his
memoir—that he is not exceptional. And at the same time, he demonstrates with
every page that he is. This is clearest in a remarkable passage in
which he asks himself whether he has been lucky or unlucky overall and decides,
in the fashion of the Stoics, that the question is meaningless:
"Sure, after waking up from a two-week coma and
discovering I needed to lose my limbs and relearn how to do everything I'd ever
done before—I definitely thought I was unlucky. But seen from another angle, I
was also lucky to be alive. I was lucky to have suffered such an illness in a
country that could save my life and support my rehabilitation. Lucky that I had
such a great network of family and friends to help and support me through
everything. So, was luck a moot point? Were good and bad types of luck to be
tallied up in some kind of futile metaphysical spreadsheet? It seemed to me
then that luck was very much in the control of whoever was making the judgment."
This is amor fati in its purest
form—but it leaves some vital components out of the equation. There are certain
things a memoirist cannot explicitly state without seeming insufferably vain
but which are crucial to acknowledge here. Nash is also exceptionally lucky in
his personality. A shy or introverted person would surely find it painful to be
the focus of so much attention as he inevitably attracts. He is confident,
extroverted, and charming. This has also enabled him to attract women: he’s
able to more than compensate for an appearance that is initially repellent with
an extraordinary degree of personal charisma.
As he admits, “my currency in the attraction economy would need to be traded
with confidence and charm. Luckily, I was rich in both of these attributes.”
Few men and even fewer women in this situation would surely be able to pull
this off.
There is also his delight in the absurd, and—perhaps
most importantly of all—his curiosity. He is able to view his disability as a
source of intriguing puzzles and fascinating insights. And his genuine interest
in other people’s experiences is key. The ability to care what other people
must be thinking and feeling—not because of how it affects you but in genuine
fascination because each human being is an intricate microcosm of
experiences—that ability to not be constantly focused on oneself, is both rare
and significantly increases one’s capacity for happiness. Happiness most
frequently arrives when you’re not looking for it and when your focus is fixed
on something outside the self.
Frankly, I do not think I would have
been able to respond in the way Nash has, if my life had taken a similar path.
I think few people would. But it’s always wonderfully uplifting to read about a life well
lived. While it must be frustrating to be primarily known for something one has
no choice in—such as a disability—I am glad that Nash has decided to spend so
much time talking and writing about it. Because perhaps the most important
thing he offers the world is his anti-fragility in the face of some obvious
challenges—things that seem as if they would be insuperable difficulties until
we see him cheerfully surmounting them.
write to Peter: magtour@icloud.com
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