There is a patient I would like to write about today, whose story I believe has tangibly impacted my outlook on life. It is worth sharing, as I think everyone can learn from him and his family. (I have obscured some details about this person to protect his or her identity.)

I recently had the privilege to meet Kevin, a fifteen-year-old Taiwanese boy who was born too early. As a result of his extreme prematurity, he was neurologically devastated from birth. He has cerebral palsy, a movement disorder that sometimes affects children who sustain damage to their brain during birth or in utero. Sometimes, people are able to live relatively normally (see RJ Mitte for instance). Other times, they are so limited by their disease that they are crippled and completely dependent on others for the full extent of their lives.

Kevin, unfortunately, is one such case of cerebral palsy. His is a spastic cerebral palsy – meaning his muscle tone is extraordinarily high compared to the healthy person. Furthermore, he frequently experiences dystonic events, where most of his body’s skeletal muscles contract and do not release. This is the equivalent of a full-body Charley horse. There have been times in the past where his muscles remained fully contracted for so long that they began to break down, causing rhabdomyolysis, or muscle breakdown-induced kidney damage. His dystonia is the worst I have ever seen in my limited experience; it is also the worst that my attending has ever seen in her decades of experience.

The first time I saw Kevin, I was mortified. Here was an Asian teenager whose head could have belonged on my shoulders; he was so normal-appearing from the neck up. But the rest of him was entirely abnormal. He had a tracheostomy – a surgical breathing hole in his neck – because his muscles would spasm so much he was at risk of aspirating. He couldn’t eat, either, and had a connection from his stomach to the skin so that he could be fed by tube. From the neck down, he was very short. His back muscles were so strong and spastic that they had warped his spine, causing severe scoliosis. He was in a diaper.

He is fifteen years old.

The first time I saw Kevin, he was actively dystonic. His back was arched. His fingers were all hyper-extended (I later tried extending my fingers as far back as I could, and found that they were nowhere nearly as extended as his were). His toes were curled back. His calves were contracted. His arms were splayed above his head. His neck was completely in contraction, and his head was sharply twisted to the left. The entire bed was soaked through with his perspiration. On his face, his sweat was intermingled with tears. He was chewing on his bottom lip so hard he was drawing blood. He was grunting. His heart rate was in the 160s. He was in tons of pain. I massaged his legs and tried to subtly do a physical exam on him. I could not bend any of his joints at all; his muscle contractions were so strong that I couldn’t come close to repositioning any one of his limbs.

He looked at me briefly, then his eyes shot back to the ceiling. He was still grunting and crying.

His father, at the bedside, was unexpectedly calm. “This happens,” he told me. “We’ll just ride it out. Maybe in a half an hour you can come back and give him some more medications.”

I stared at him. My heart rate was through the roof. I had never seen a child in more distress than Kevin was in that moment. But I would come to learn that this episode is entirely within normal limits for this young man, and he experiences full-body cramps every several hours, every day.

He is fifteen years old.

Over the next several days, I got to know Kevin much better, as well as his family, who was constantly at his bedside. On a daily basis, I would get a page from the nurse saying he was dystonic again. I would go back to his room to find one of his parents holding him, rocking him back and forth, and massaging him; his head would be twisted far to the left, he would grunt, and all of his limbs would be severely contracted. Sometimes, he broke out of it in several minutes, and he would take a deep breath as his limbs all relaxed. Other times, it took several hours, and an additional rescue medication.

He is never able to move any of his limbs at will. He is a quadriplegic.

His parents have never panicked. These are, apparently, an everyday occurrence, and they are so accustomed to it that they are no longer alarmed. It is a strange sight when a child is grunting in pain in bed, and his mother is sitting on a nearby couch watching television. But it is an understandable one. Parents know their child best, and normalize their experience in a way that allows them to tolerate extremes.

In the rare times I see Kevin when he is not dystonic, I talk to him. He cannot talk back. It is hard to tell if he even understands what I am saying. But occasionally he looks at me with drifting eyes, and his mouth arranges itself into a tenuous smile. In these moments, I surmise he is content and comfortable and happy to have company. But sometimes his smile disappears in seconds, and I cannot be sure whether I had imagined it.

Once I asked his mom what he is like at home. She said, “He is a happy boy. He loves watching movies. I can tell when he likes a movie because he smiles and smacks his lips.” I asked her how she interacts with him. “I hug him and talk to him, and he smiles and is happy. I watch television with him.” About his education: “He is homeschooled. He cannot talk, but he can make smacking sounds when you tell him something like 1+1=2. Then you know he understands.”

Sometimes, I find myself standing by his bedside and staring for several minutes at a time. Part of what intrigues me, I think, is how normal his face appears. On a medical service where so many of the children have facial and skeletal anomalies, it is an admittedly welcome sight. Kevin’s face is entirely typical of a fifteen-year old Asian male. I can imagine him as a good friend. And I can imagine, in another universe, my head on his shoulders, and my body writhing in pain for hours every day.

Yesterday, I went into his room early in the morning. He was sleeping calmly in bed, one of the rare occasions where his body was not actively spasming. I asked his mom how his night was.

“Yesterday was a good day. He only had one spasm.”

“Yesterday was a good day.”

Riddle me this. How is it that a mother and her disabled child who experiences painful dystonic crises every single day can have “a good day” while being hospitalized, on the same day that a Harvard medical student who has never experienced pain beyond a Charley horse goes home from work and tell his friends about his “horrible day”? What is it about the concept of happiness that makes it such a backwards commodity, that the ill and wretched can experience more joy than wealthy and reputable white-collar professionals?

I pose as my answer the notion of “normality of experience.” I define it in this way:

An extreme value, when normalized by a denominator which is similarly extreme, is brought back to the average.

Put in simpler terms: Comparison is the thief of joy.

Having been in the privileged situation of observing the sickest and saddest patients in the morning and spending time with the healthiest and wealthiest slice of society in the evening, I am struck by how differently people treat their life circumstances. For instance: I have been fortunate to attain education at one of the most reputable institutions in the world. By all broad metrics, I have been extraordinarily successful student. But within the narrow selection of my peers at Harvard, my educational victory is nothing more than typical. My peers have been similarly well-educated, many with additional graduate degrees I will never attain, with more leadership experiences than I will care to strive for, with more awards than I even know the names of.

By living and spending time with this select group of people, the things that otherwise would have set me apart have now been completely normalized, and were my joy to be completely derived from my achievements, I would no longer be very happy. We become desensitized by those who surround us. The ongoing conversations of getting the next award, hitting the next career goal, and passing the next test become our warped milestones for success, and we forget how far we’ve already come. Worse, in such an environment, joy becomes conflated with academic achievements, and we forget what it truly means to be happy.

We take things for granted. Like being able to breathe without the need for a tube. Or being able to take food by mouth. Or being able to sleep in our own beds. Or being able to learn, and to understand what we learn. To communicate with our families. To speak. To spend meaningful and valuable time with others. To go an entire day without succumbing to excruciating and crippling physical pain.

And, once these have been conditioned upon: we begin to take for granted our social standing. Our ability to own a home, to have supportive families. To pay rent. To afford college degrees. To not need multiple jobs so we could advance our careers even more. To be able to shunt our attention and time toward focusing on our futures, rather than worrying about putting food on the table today.

Obviously Kevin and his mother had a great day yesterday. For someone who’s in debilitating pain every single day, it’s no wonder that a single spasm-free night can bring such extraordinary joy to this family. It feels strange to me that for this family, a single positive event tips them into happiness. More and more, it seems like my peers and I are just the opposite: a single negative event in a backdrop of a good day can be enough to tip us into anger and melancholy.

This I believe: there are two types of happiness, intrinsic and extrinsic. We gain extrinsic joy when we derive happiness from others’ perception of us. Things like graduating with another degree; gaining status at work; winning an award. Things like getting a monetary raise (beyond the point where we derive an appreciable marginal benefit with every extra dollar) can be extrinsic forms of happiness, as it allows us to feel superior to others around us.

And there are intrinsic forms of joy. These are activities that bring us joy purely because they are fun and fulfilling. Like learning a new song on the guitar, even if it still sounds pretty muddy and is in no way ready to be showcased to anybody. Cooking a new dish. Playing a sport. Reading a book. Writing a crappy poem nobody else reads. Taking a walk. Eating. Breathing. Spending time with someone and enjoying their company.

And this I believe: the more we fall prey to the depraved rat race that is “chasing one’s career”, the more we focus on extrinsic forms of joy, and the more we let intrinsic happiness fall to the wayside. This has certainly happened to me to some degree. There was a point years ago when I would have been devastated if I got a poor evaluation, and when an award would have made my week. To have one’s mental and emotional state hinge upon these external factors is a dangerous place to be.

Perhaps it is a selfish thing, that a large part of my love for being in medicine comes from the fact that being in the hospital gives me some perspective. And is it not ironic and contemptible that “gaining perspective” is also a result of comparing myself to those who are sicker than me? I don’t know. Sometimes I worry that this train of thought is simply another version of me feeling superior to others because I’m not as sick as they are. Is my attempt at readjusting my perception of happiness in itself a form of extrinsic joy? I can’t say.

What I can say is this: being a student of medicine has placed me in the unique position of experiencing life through the lens of people in all stages of life, from every background imaginable, in their most scared and vulnerable moments. It has been a tremendous learning experience to see what brings them true fear and true joy in this these moments. And it has served as a constant reminder that the things we believe bring us happiness when we are healthy and thinking cerebrally about our benchmarks for success are very, very different than what actually brings us happiness when our lives come down to the wire.

Most importantly, being a student of medicine has forced me to realize that nothing lasts forever, and we ought to learn to cherish even the smallest things we have now – like our ability to breathe, eat, talk, think, communicate – before we invariably start to lose them.

Kevin is fifteen years old. By the end of this year, he will have lived over five thousand days of life. Most of these days will have been painful and uncomfortable. But some will not. And in those moments between his dystonic episodes, he and his family are happy.

There are things worth being frustrated by. Career and life aspirations should absolutely be important facets of our lives. But I posit that most of the things we complain about every day are not worth losing joy over. If this brave child and his family can derive such pleasure from each other’s compassion and care even in the face of extreme day-to-day struggles, maybe we ought to put some effort into learning how to derive a similar sort of happiness in our own lives.