I already had a backache during Donna Shalala’s plenary session at the 11th International AIDS Conference. During my flight to Seattle a few days earlier, I noticed I was particularly uncomfortable. But who isn’t on a transcontinental flight?
Over the next week, I grew so ill that I had to lie in the hotel bed all day with the curtains drawn. I couldn’t stand the light of day. I felt like the very air I was breathing was toxic. If I take one more breath, I thought, the poisonous atmosphere might kill me. My back and my neck and my brain all hurt like nothing I had ever felt before. It was even worse than the worse migraine I had ever experienced — and those typically felt like someone was stabbing an ice pick through my forehead and rubbing the back of my eyeballs with a cheese grater.
I was present at the conference as a representative of Philadelphia’s needle exchange program, one of the first in the country. More than 10,000 people attended as representatives of countries from all over the world — researchers, activists and practitioners. Everyone in attendance was passionate about this crisis and stemming its tide.
Among the crowd were also plenty of people who were HIV+. To serve them, a medical clinic was set up at the conference, staffed with physicians who were ostensibly experts in the treatment of HIV. As my own symptoms worsened, I stopped by the medical tent to see if they could help me.
Now, I understand that I presented the physician with the symptoms of a disease that affects 10% of people with AIDS. And that the doctor who treated me should have been able to recognize my plea for help.
“I have the worst headache I’ve ever had in my life,” I told him.
His advice: “You probably just have a virus. Keep taking your Tylenol!” By the time flew back to Philly, I had consumed an entire bottle. I’m surprised I still have a liver.“I have the worst headache I’ve ever had in my life,” I told him. His advice: “You probably just have a virus. Keep taking your Tylenol!”
When a friend picked me up at the airport, I asked to be delivered straight to an emergency room. Ten milligrams of Valium, several screams of pain and one spinal tap later, the ER resident physician decided that I had fallen prey to meningitis, an extremely painful inflammation of the brain and of the spinal cord. Later, he told me that people with meningitis and brain hemorrhages almost always say, “I have the worst headache of my life.”
Three pathogens can lead to meningitis: viruses, fungi and bacteria. Bacterial meningitis is fatal 12% of the time. Fungal meningitis is typically contracted by people who are immunocompromised and can often be fatal as well. People with AIDS are more likely to contract fungal meningitis. Viral meningitis can result from an virus under the right circumstances, of which there are many, but fortunately it is not fatal nearly as often. The symptoms for all three forms are the same.
For five days, I did not know which form I had. For five days, I laid in the hospital bed, averse to visitors because I was in so much pain. For five days, I wondered if I might die.
Part of my confusion was caused by the medical system itself. Seen and treated only by residents at a large teaching hospital, I was told that I probably had bacterial meningitis because I worked at a needle exchange. In fact, the resident, pleased with himself for having solved this mystery of my illness, told me that he presented my case at the hospital’s daily morning report. I told him repeatedly that I had not, as he suspected, had an accidental needle stick at the exchange program. But he remained convinced that I had and did not know it.
Rather than truly listening to what I told him and viewing me as a reliable source of information, he chose to pursue his own agenda. He needed a case to present to his superiors, and he chose mine. Even if that meant fudging the facts to suit his story and make his case more believable.
In the end, I didn’t die. I had viral meningitis, and, after weeks of lying on the couch shielding my eyes from the light, I basically felt better and returned to work with no lasting effects. In the process I learned to doubt. I learned to be critical of the medical system instead of to trust that doctors always know best. While I thankfully wasn’t a victim of a fatal medical error, I did worry a great deal. And while the resident could not have known precisely which pathogen caused my illness, he also might have listened a little more closely to the facts I told him.