Jothy Rosenberg is one of the most recognizable people who rides the
Pan-Mass Challenge. There
aren’t many one-legged cyclists on the road, after
all.
Just recently, he published an autobiography,
entitled “Who Says I
Can’t: A two-time cancer-surviving amputee and entrepreneur who
fought back, survived and thrived”.
Thirty-five years ago, Jothy lost his right leg to bone
cancer when he was 16 years old. Three years later, the cancer
had metastasized in one of his lungs, which also was removed. At that
time, he was told that no one with his condition survived, but he agreed
to undergo experimental chemotherapy that saved his life.
However, the amputation put him in a class of people called
“disabled”, which he loathed. He compensated by becoming
obsessed with undertaking every challenge anyone laid before him. In the
process, he has achieved an incredible number of athletic
victories that would be impressive on any able-bodied
person’s palmares.
Cancer and Amputation
The book contains a number of amusing and informative
anecdotes about how he and others have related to his
amputation, from scaring a coworker by shooting an automatic staple gun
into his “leg”, to his volunteering to have his
“leg” chopped off in a haunted house act.
But he also relates the many and sometimes unexpected
complexities of life as an amputee. A simple question like,
“How much do you weigh?” requires an evaluation of whether
to disclose his actual physical body weight, whether he should add the
weight of his prosthesis or not, or whether he should come up with some
extrapolated weight as if his artificial leg were made of flesh and
bone.
Another thing you wouldn’t think about is how incredibly
fatiguing something like simply standing around at parties is for him.
While most people alternate putting their weight on one leg and then
another, unconsciously resting each leg in turn, Jothy cannot.
Jothy also tells us how difficult it can be to carry anything while
walking with crutches, although that might not seem like such a big feat
after you read his description of ascending a ladder—one-legged,
of course—while carrying an adult golden retriever!
I learned two noteworthy things about cancer from
Jothy’s description of his treatment. His cancer metastasized in
his lung, which apparently is the most common place for it to spread,
since the lungs are the first place venous blood goes after returning
to the heart.
The other deals with how traumatic chemotherapy treatment can be,
even as saves one’s life. Jothy’s psychological and
physiological reaction was so intense that merely seeing a rug with the
same pattern as that in his treatment clinic would cause him to start
vomiting. Although we’ve come a long way in being able to treat
cancer, the treatments can still be extremely traumatic, and more
targeted therapies need to be developed.
Cycling and the PMC
Although Jothy’s athletic accomplishments are many and diverse,
my interest in his book was largely due to his cycling
and his participation in the Pan-Mass
Challenge, so let me talk about those for a moment.
Jothy came to cycling fairly late in his recovery, so it is
not a major part of the book. His participation in the PMC gets
about half a chapter toward the end of the book. Despite that, the
book’s full-bleed front cover photo shows him
riding a bike in his 2003 PMC jersey. The cyclist in me chuckled at the
photo, however, because I noticed that the quick-release on his front
brake is wide open.
Jothy relates all the basic facts of the Pan-Mass Challenge, along
with numerous memorable moments, passing very briefly over his speaking
at the inspirational pre-ride kickoff show one year.
I was especially amused when he described something right out of my own
second-year ride report: his dismay when the 192-mile route came
within blocks of its Provincetown
destination, then made a hard right turn out to the sand dunes of Race
Point. That last-second detour adds a hilly five miles to the PMC route
as it circles Provincetown before finishing on the opposite side of
town.
In terms of cycling with one leg, Jothy faces two
major complications. Starting and stopping are both challenging as they
require careful balancing and timing. And he cannot stand on hills, a
technique that two-legged riders use to increase their pedaling force
when the road pitches up. Remember that last part, as I’ll return
to it again in a bit.
Mortality
One of the themes I looked for was how cancer—or more
generally the threat of mortality—changed him. I’ve
observed that in the face of death, people usually do not become
depressed or resigned, but are transformed by the realization of how
wondrous and truly precious each moment of life is. Jothy seemed to
confirm this when he described his response to his cancer diagnosis:
It’s not as if I was obsessing over the prospect of
dying. I really didn’t dwell on it. I didn’t bemoan my fate,
lash out, or become frozen in either fear or self-pity. It moved to the
background, but it underlined everything I did. […] I felt a
sense of urgency about everything. “Hurry up and live” could
have been my motto.
The knowledge and acceptance of the reality of death, whether it
comes as a result of a cancer diagnosis or mere philosophical
soul-searching, has the power to transform us by giving direction to our
daily lives. While I wouldn’t wish a cancer diagnosis on anyone,
Jothy illustrates how beneficial it can be to come to terms with death
when he writes, “I was able to see [that] my diagnosis was
actually the beginning of a journey toward the meaning and purpose of my
life.”
Tone
There are a pair of opposing pitfalls that face a disabled person in
writing their autobiography: if you emphasize the
disability, you run the risk of the book appearing like a
solicitation for pity; or if you emphasize your
accomplishments, you run the risk of bragging and appearing
arrogant.
There’s little question where Jothy falls on this scale. His
book is focused firmly on his prodigious athletic, educational, and
entrepreneurial achievements, and less on his diagnosis and disability.
There is a thin line between celebrating his genuine and noteworthy
accomplishments and self-aggrandizement, and Jothy has to dance around
that line to get his message across.
Knowing this, I wonder how critical the description of his
entrepreneurial success is to the book’s message. While
his athletic accomplishments represent obvious and inspiring victories
over his physical limitations, his career as a founder and executive at
several technology start-ups is much less directly affected by his
amputation. Although it does further illustrate his characteristic
response of rising to meet all challenges, it left me wondering how much
of his risk-taking is rooted in his own innate personality trait, rather
than something he developed as a reaction to his physical
disability.
For those reasons, I found one anecdote particularly
interesting. He describes riding a bike on a dirt road down a
long hill into a valley and finding himself stuck. Without enough
traction in the road’s loose gravel, he couldn’t ride
forward over the next hill or back the way he came. He had to face the
prospect of breaking his rule of always riding to the top of any hill he
started, no matter what:
Calling someone to get me out of this situation would
just feel too embarrassing. I had only one option. I was going to have to
do what I said must never happen: hop [one-legged] up that
hill.
Because Jothy spends so much time writing about his victories,
I’m curious about how he related to this failure,
but all he tells us is that he misjudged that particular ride.
Describing what he learned—or even why he chose to include that
story—would have been a nice way to balance out the tone of the
book, to keep it from sounding too preoccupied with his successes.
Rising to Challenges
I’ve already alluded to the most recurring theme in the book:
Jothy’s need to prove himself by overcoming every challenge he
could find. In the book, he introduces this by describing how demeaning
it is to be offered a compliment, such as “You’re a great
skier…”, then have that praise undercut with the
caveat “… considering you only have one
leg”. To a disabled person, this seems like a
diminishment of their abilities, and that perception is what drove Jothy
to spend most of his adult life trying to excel at swimming, cycling,
volleyball, hiking, skiing, water skiing, sailing, whitewater rafting,
and other sports.
For Jothy, that word “considering” is an
insult which led him to believe that
The disabled person needs a constant outlet where they
can excel, where they can overcompensate, where they can leave the
temporarily able-bodied people in the dust.
and
The most gratifying moment in the recovery and
rehabilitation of a person inflicted [sic] by a disability is when
someone able-bodied says they cannot compete with that
person.
In describing his philosophy, Jothy defines a “level playing
field” as the ability “to excel beyond those who are not
disabled”. To me, that characteristic striving to be
“super-normal” sounds like an overreaction, a
psychological overcompensation for his disability.
One of the pivotal questions unanswered by the book is whether others
would respond to a similar disability by also taking every single dare or
challenge they could find. A willful youth even before his initial
diagnosis and amputation, Jothy would have naturally responded
in this way, but is that true for others? Was that merely his
particular way of responding to his disability, or is it a common
experience for most people who suffer some form of disability?
I also wonder whether the amputee’s age plays into
one’s response to such an immense challenge. Teenagers
usually rail against anyone or anything that implies that they cannot do
something. Is this kind of overcompensation a typical adolescent
response? Do adult amputees respond differently?
Or is the amputee’s gender a contributing
factor? Do girls who suffer the same experience respond in the
same externally-focused way? To what degree does the psychological need
to prove oneself physically normal, competent, and strong correlate with
gender?
This raises another interesting question. Did Jothy’s
disability help him in the long run by channeling his rebellious
teen anger in a practical direction: toward overcoming his
disability and pushing his physical limitations, rather than challenging
his parents and pushing the behavioral limitations they would have
imposed upon him?
The book offers some limited evidence that Jothy’s reaction may
be normal. In one passage, he cites a study which uses the term
“post-disability syndrome” to describe his
response. It quotes one polio survivor as saying:
Don’t let anyone tell you that we just want to be
“normal” like everyone else. We have to be better than
everyone else just to break even… and that may not be
enough.
Unfortunately, the age and gender of this individual are not
reported, but this compulsive need to be better-than-normal
doesn’t seem to be atypical. Whether this reaction is usual or
not, and whether that’s attributable to age or gender or basic
personality makeup remains unknown.
But if this is a common reaction, I think there’s a
double-standard being applied. On one hand, disabled persons expect and
demand that society treat them just like anyone else. On the other hand,
they may not view themselves as ordinary, and overcompensate for this by
holding themselves to a superhuman standard. They expect
everyone else to treat them as normal, but are unable to see themselves
or treat themselves as normal.
This disconnect was most apparent to me in one passage where Jothy
talks about his “super-aggressive drive to perform at a higher
level”, his need to “overcompensate and prevent that dreaded
pity reaction”, and the “constant attacks on [his]
self-confidence”. In contrast to such exaggerated perceptions, his
very next sentence describes these feelings as “a healthy voyage
of self-discovery”. Perhaps those feelings are common and
unavoidable, but they don’t sound like a mature response to
me.
Letting Go
Still referring to the faint praise of being excellent at something
“considering one’s disability”, Jothy makes the
following insightful observation:
Everyone gets hit with the “considering”
epithet in some way for some thing. It stings, whether it’s
because you are too Black, too Asian, too female, too old, too young, or
too disabled to perform in the manner in which some people think you are
supposed to perform.
I find this interesting because it shows that we all have to
come to terms with being perceived by others as
disabled—and subject to their lowered
expectations—at some point in our lives, even if only as a result
of the natural aging process.
If someone told Jothy that he was too old and infirm to do something,
I would expect him to react strongly and undertake that challenge just
to spite the person. However, later in the book he surprised me
by turning around and saying of himself:
Perhaps now it is okay to say, “He’s fast
considering… he’s getting old!”
One of life’s great lessons is that we all eventually have to
come to terms with our own reduced capabilities. I find it
interesting that, at 50, Jothy can be philosophical and accept
the reduced abilities that come with aging, whereas as a young adult, he
put so much physical, mental, and emotional energy into denying the
changes in his physical abilities that came with his amputation. I
wonder whether that reversal in attitude is a sign of Jothy’s
maturation, or the natural result of the confidence that came after repeatedly
proving himself, or whether such a common disability as aging is simply
more acceptable to him.
Turnabout
In closing, I want to take a moment to turn the tables. While Jothy
spent his life battling against people making assumptions about his
abilities, there’s one point in the book where I was
surprised to find him making the same kind of assertion about
what able-bodied riders can do.
In talking about the disadvantage he has when climbing hills with one
leg, he says of the rest of us:
Even serious riders who try one-legged riding don’t
sustain it for very long and would never try a hill that
way.
Jothy, when people expressed disdain about your abilities, you
invariably took it as a personal challenge and proved them all wrong.
After reading your expressed skepticism of able-bodied riders’
abilities, I have every intention of responding as you would:
by taking up the challenge implied in your comment. This
spring, in preparation for my tenth PMC, you can expect to find me
riding hills one-legged. After all the comments you took as personal challenges,
turnabout is fair play, after all!
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