Ornoth

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!

I recently read Rachel Naomi Remen’s book “Kitchen Table Wisdom”, wherein the author relates the story of how she went from her purely intellectual orientation as a physician to a more spiritual place, as well as the stories of other people she came into contact with that inspired her.

Overall, the book didn’t really blow me away, but there was one story about the author’s childhood that struck a resonant chord, so I thought I’d record that here, since I think it directly addresses the anxiety that people feel about not knowing the “meaning” of their lives.

The author relates that her family always put together jigsaw puzzles without the aid of the picture on the box, in order to make it more of a challenge and a surprise. As a young girl, she was just learning what jigsaw puzzles were. She was attracted to the colorful pieces, but she intuitively disliked the darker ones, so she took the latter away and hid them, to the consternation of her parents.

As an adult, the author used this as a metaphor for how life’s meaning reveals itself to us. I’d like to share and extend that metaphor a bit.

Our lives are indeed like a jigsaw puzzle whose final image isn’t known until we place the final pieces. Each day we place another piece, but progress is slow and the picture only makes sense as it nears completion.

If you focus solely on what today is like, all you see is one minuscule piece of your life. Today’s piece of the puzzle might be light or dark, colorful or muted, busy or empty, but you really can’t infer anything about your life overall from this one little piece. And even if today is a dark or painful part, you can’t assemble a great picture without the contrast of light and dark pieces, just as you can’t go through life with only mindlessly saccharine-sweet days. You can’t complete a jigsaw puzzle or a meaningful life if you ignore, avoid, or deny the existence of its dark parts.

Our past is the part of the puzzle we have completed. We can step back and look at what our life has been like so far, what kind of image it makes and what meaning it holds. By looking at the past, we can begin to make some sense of our life, or at least our life so far. If you look at the past, you can start to see meaning, but things could—and will—change substantially from here forward.

The future is, of course, unknown. We know the shape and color of the past, but we only have limited knowledge about what our next piece of the puzzle might look like. It could be a carbon copy of today’s, or it might introduce a completely new theme, like the first appearance in a puzzle of a person or the edge of a building. Our lives might have been all ocean as far as we have seen, but the next piece could be the point where the sea meets a beach or a rocky coastline, or it could be the first part of a gorgeous sunset on a distant horizon.

One of the great lessons here is that looking for the “meaning” of your life is futile. Meaning isn’t something that you are handed; it’s not a mandate from family, church, or job. Meaning isn’t an input, but an output; you create that meaning with every decision you make and every action you take. Meaning is the result of living, and thus can only be seen retrospectively.

That’s not to say that we shouldn’t have principles that guide our actions. Just remember that the principles aren’t what gives your life meaning; meaning derives solely from the actions that those principles have promoted. Your principles die with you, and are only made visible to the world through your actions.

While at the same time, each and every action you take contributes to that meaning. Whether you live according to your highest ethics or just spend your time on autopilot, every day you contribute the exact same amount toward the ultimate meaning of your life. So if the meaning of your life matters to you, it’s imperative that you live each day according to the values you cherish most.

This is what I have learned: it takes great presence of mind and strength of will to live according to one’s highest values, and no one is perfect. We make mistakes. None of us are Mother Theresa, but over time we can gradually learn to see our autonomic behavior and then replace our mindless habits with better choices. That’s why Buddhism calls it “practice” and a lifelong path.

Having already developed a strong personal philosophy outside of any structured study, I bought the book "Philosophy for Dummies" in order to get an overview of the great philosophers and philosophies of history. I was hoping that I'd be exposed to some new ideas that I hadn't accounted for in my own philosophy, and/or find some more details about philosophers whose opinions coincided with the ones I've developed during my life.

While the book was a passable overview of the major questions of life, the author presented it in a very biased and judgemental way, which is unfortunate because I disagree with him on most issues. Still, I was able to think about my opinions in a more structured fashion, and come up with a few specific statements that I believe, even if they're no different from the beliefs I had going into the exercise. Here are some highlights:

1. We will probably never have the ability to answer some of life's biggest questions. We are in a situation where we must act based on limited information about what life is all about. So the most logical thing we can do is make conscious decisions and live our lives with the meaning that we choose to give them.
2. Similarly, because there is no inherent or apparent meaning to life, we have the freedom and opportunity to give our lives meaning and enjoy our lives while we're here. What matters is what gets you through your life with the most meaning and happiness possible.
3. Most people never enjoy the life they have now; they're always looking somewhere else, either in the future or the past, like a housewife who has misplaced her keys and is looking everywhere but where they are: right under her nose. This is exacerbated because we live in such an acquisitive culture, where you never seem to have "enough" of whatever it is you think will make you happy. Life is a process, and if you die never having reached a point where you're satisfied and content with your lot, you will have lived without ever having known happiness and contentment.
4. Philosophy in general cannot prove anything, nor even provide much evidence on which to base an opinion about life's biggest questions. Because it doesn't make sense to believe that something is an absolute without evidence, I don't believe there can be any universal definition of morality or good (i.e., I believe in moral relativism or ethical subjectivism). There are certainly ample examples of people violating commonly-held morality, while adhering to what they believe is right. Even Hitler believed that he was doing something moral and good.
5. I also believe in "amoral relativism". That is, you can define "evil" very simply and succintly as someone whose morals and values differ from your own. That's why, when people have philosophical difference, people are tempted to view the opposing viewpoint as "evil" or "amoral".
6. We like to think that we "decide" what we believe, but belief is not subject to direct control. While we might be able to indirectly influence it, belief is one of the few things that is equally emotional as it is rational, and sometimes we only discover what we believe when we're put in a position that tests or challenges our belief. In fact, although we like to think that we "know" what we believe, it is just as difficult to understand as it is to control, which is why so many people refer to examining their beliefs as a "process of discovery".
7. Humanity is the result of random evolution; we were not "created".
8. Although most people refuse to accept it, man is not significantly different than most animals. Even a cat or dog has a memory, makes decisions based on experience, can understand cause and effect and future consequences, and lives much the same kind of life as we have. The only significant difference I can see is in scale: mankind's capacity to learn and communicate is radically higher than that of other beasts.
9. When we die, like any animal, we die. There is no essense or spirit which survives when our brain activity ceases. Because death is and inevitable end of our being, and because we never live to experience it, it is illoigcal to fear death. On the other hand, it certainly is logical to fear suffering and pain, if those are part of your road to death. But death itself should be accepted as the ultimate, immutable fact of life. Accept it and move on and enjoy your life, motivated further by the knowledge that your portion of life is finite.
10. Because of their dispassionate opinions, history's existential philosophers have been viewed by the majority as depressed, defeatist, and negative. However, existentialism can also be a very positive, empowering philosophy. When you accept the fact that life is transitory, it makes that time much more precious an experience, and drives you to consciously enjoy every moment as it occurs. The world is full of wonder and beauty, and each precious fleeting moment should be savored while it is available to you. And when you accept that there is no God or other meaning to your life, it gives you the amazing freedom to define what your life will mean, and pursue your own happiness and fulfilment. For me, existentialism is clearly the road which is the most positive, empowering, and likely to lead to a happy and fulfilling life.

So "Philosophy for Dummies" didn't really add much beyond what I originally came to the exercise with, unless you could the insight that there's not much out there that is going to significantly change my world-view. And because the book completely dismissed existentialism and the essence of my personal philosophy, the next thing for me to do is conduct a more thorough study of the thinkers who have expressed ideas that run in a similar vein to my own.