Privileged Misfortune

November 5, 2015

 Self-portrait, one month after diagnosis.

Self-portrait, one month after diagnosis.

Four years ago today, I took my last set of antibiotics. I took the last of two pills, isoniazid and rifampicin, that had saved my life.

In February of that same year, I was sitting at my computer in the wealthy suburb of Spring Valley in Nairobi, Kenya’s capital. Suddenly, I was seized by an incredible pain on the right side of my chest. It was not unlike one of those “stitches” you might experience when running, which usually can be alleviated by breathing heavily and stretching. No amount of stretching and breathing seemed to help. In fact, it only worsened. In 20 minutes it was unbearable, and I was forced to wake up my housemate and her fiancé. They rushed me to Aga Khan Hospital E.R. at around 11 pm, where I waited for hours to receive a muscle relaxer prescription. Two days later I returned, still complaining, and they reassured me after taking an X-Ray that everything looked normal. So I continued to prepare for my return home to California, and pushed the mysterious pain in my chest out of my mind.

The pain persisted, however, and a few days after arriving home to the U.S. I visited Urgent Care. The physician was so confident that my problem was muscular-skeletal that he didn’t bother taking a second X-Ray and sent me home telling me to “take it easy”. I followed up with my general physician, who ordered a blood panel, ultrasound and urinalysis. All results were normal, so I tried to relax into my homecoming and go about my days as usual. I went to the climbing gym. I went to the beach. I went out for drinks with friends. It felt good to be home.

Three weeks later, I got what felt like a horrible cramp in my neck. Over the course of the following week, the cramp spread throughout my shoulder. My back seized up, and the pain in my chest came back. I continued to address the pain as if it was a series of muscle spasms. Acupuncture, a surprise set of adjustments from a Chiropractor on the floor of the climbing gym, deep tissue massage from a dear friend. Nothing worked. Fast forward a couple of days and I was writhing around in my own sweat. Vomit. Shit. Repeat.

This flu persisted, but it wasn’t until I started feeling gut-wrenching pain in my ribcage that we returned to Urgent Care. An X-Ray showed pneumonia in my right lung. One Z-Pack later and my fever was still raging. I hadn’t eaten in weeks. I’ll never forget my doctor’s face when she looked at the second X-Ray. The pneumonia had quadrupled in size. She encouraged us to go to the hospital. So we did.

The rest is a blur. Acute Pneumonia. Pleural Effusion. A Thoracentisis. There’s a Pulmonologist in front of me, explaining how he will insert a pen-cartridge sized needle into my back and remove the majority of the fluid from my lung and pleural cavity, to solve what he thinks is a bad bacterial lung infection. The room quieted as he filled two litre bottles with brown-green foamy liquid.

I was immediately admitted to the hospital and asked to spend the night. Two days later I tested positive on the IGRA blood test for Tuberculosis. They moved me into the isolation ward. My fever was stubborn. A second pulmonary specialist attempted to perform another thoracentisis. The pain was monumental. What had previously been beer-like fluid pouring with ease into litre containers was now hardened and congealed sap, almost impossible to pull out with a needle and excruciating when extracted from the angry tissue of my pleura. My screams upset even my doctor, who abruptly stopped the procedure and left the room.

I don’t remember much else, but the executive decision was made that surgery was necessary. I had at this point held a fever between 100–103 degrees for over two weeks, and they were concerned. My weight was dropping rapidly. I was becoming less responsive. They needed to get the rest of the fluid out of my lungs before the antibiotics could really do their job.

I woke up on the surgery table screaming through the oxygen mask. It felt as if someone had thrown an axe into my chest and left it there. I thought maybe they had forgotten to close me back up. Surely this pain was the cause of a huge mistake. They rolled me into the Intensive Care Unit and nurses scrambled like ants to hook me up to the morphine machine. The next four days were spent suspended between the realms of my painful reality and wild, morphine-induced hallucination. I was in the plains of northern Kenya, where rainbow-colored animals killed each other around me. I ran my hands through the gold glitter on some dude’s chest hair at a party, shortly after Brad hit on me in front of Angelina. Mr. Potato Head lifted weights in the corner of my hospital room. I would come into consciousness periodically, feeling utterly confused and terrified. The morphine didn’t heal or even improve the pain, it rather disabled me from being able to emotionally respond to it in the way I wanted to. The pain was there, in full force. All-consuming and endless.

I could go on to tell you the story of my pain. I could tell you that I cried when I left the hospital, not out of joy but out of grief. I could tell you about the humiliation of needing help in the bathroom, and sleeping at the foot of my parents’ bed. Or about the visits from County Health Department. Or the guilt I felt when I found out that every passenger on the Boeing 747 I flew to Heathrow, as well as every passenger on the Boeing 747 I flew from Heathrow to SFO had to be tested for Tuberculosis. I could tell you about the 20 minute walks to the mailbox, or the first time I ate again.

I could tell you more about my recovery, but that isn’t the point of my story. The point of my story comes back to those little pills I stopped taking four years ago. The point of my story is that Isoniazid, Rifampicin, Pyrazinamide, and Ethambutol saved my life. The point of my story is that because of those 4 antibiotics, which I had easy access to, I was able to travel from the hospital bed to rock climbing again in Yosemite in two months, rather than to the morgue. Antibiotics get a lot of trash talk these days…and I’m here, alive today, to tell you that they save lives. And that these four drugs would save more lives if people had access to the care that I did. But they don’t.

What has been most enlightening to me in telling my story is the amount of Americans who don’t even know what Tuberculosis is, regardless of the fact that TB has now surpassed HIV in numbers of deaths annually. In 2014, 1.5 million people died of Tuberculosis. 1.5 million. It used to be the leading cause of death in the United States. And the most common question I heard after telling people of my diagnosis was, “Didn’t you get the TB vaccine?”

There is no TB vaccine given in the United States. That little skin prick they give you is a test to see if you have already been exposed to TB. They put a small amount of TB antigens into the skin on your forearm. If you have been exposed to TB bacteria, your skin reacts to the antigens.

Kenya is one of 22 countries listed by the World Health Organization as a TB “high burden” country. Kenya reported 9,400 deaths to TB last year. According to the WHO, 95% of all TB deaths have occurred in developing countries. While in Nairobi, I worked for a community group attempting to educate locals in the informal settlement, also known as a “slum”, called Mathare, on proper sanitation and hygiene. I probably picked up the TB mycobacterium while working in Mathare, but it’s impossible to know. I do know, however, that the chance the person who exposed me to the TB bacterium received the health care that I received, or any at all, is very unlikely.

This is why I am writing today. I am writing today because there is a high mortality rate among slum residents in Nairobi, and worldwide, from preventable and treatable conditions. Tuberculosis is a treatable disease. TB morality rates, as well as drug-resistant TB, exists largely because patients do not have consistent and proper access to the antibiotics and treatment that saved my life.

Partners in Health is a non-profit health care organization which has been instrumental in the global fight against TB for the last two decades. It was founded in 1987 by none other than Jim Yong Kim — the current president of the World Bank, Dr. Paul Farmer — one of my personal heroes, Ophelia Dahl, Todd McCormack, and Thomas J. White. I cannot say enough good things about the work PIH does. They are not currently based in Kenya but have programs in 10 countries, 3 of which have been so successful that they have been handed off to the country’s respective Ministry’s of Health. Their stated mission is “to bring the benefits of modern medical science to those most in need of them and to serve as an antidote to despair”.

My story is a story of privilege. My story with Tuberculosis was one of misfortune, but my life is, in the scheme of things, one of privilege and good fortune. I come from a family and a part of the world which enabled me to get the care I needed when I needed it most, and that is not a story that millions of human beings are fortunate enough to tell.

Click here to donate to Partners in Health.