Restless Leg Syndrome
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!