When I got to my son's hospital room, the bed was empty. I'd rushed to New York City from my home in suburban Maryland after he called me from the emergency department of the hospital in his neighborhood. "Don't freak out," Alex had said, "but I can't move my legs."
Now I couldn't find him. A young man in a white coat passed me in the hall and saw the panic on my face. "Are you looking for Alex?" he asked. "They just took him for an MRI. It will be a while."
I'd thought Alex was safe. After graduating with a degree in wildlife biology, my intrepid son went to Equatorial Guinea in West Africa to study sea turtles. I tried to talk him out of it. It was fall of 2014, at the height of an Ebola epidemic that had killed 5,000 people and infected more than 20,000. He went anyway. For five months he camped in a jungle, slept in a hammock, and ate sardines and rice.
When he came home, I could finally relax. I chuckled when he told me his next adventure would be a move to New York City. A theater buddy from college needed a roommate, and Alex saw it as another opportunity to advance his career. He applied for and was granted a fellowship at the New York Aquarium in Coney Island, and off he went. At least New York City had electricity and running water and no Ebola, I thought.
That was small consolation when Alex was finally wheeled back into a hospital room. He lay immobile while intravenous (IV) tubes streamed megadoses of antibiotics and steroids into him. A tube snaked out from under the covers, draining urine into a bag attached to the side of the bed. Compression wraps around his legs automatically inflated every 30 seconds. Nurses administered blood thinners to ward off clots and stroke. The paralysis that had started in his legs at the time of his call had progressed and was now midchest. He was doing breathing exercises so his lungs wouldn't collapse. He was losing finger dexterity and slurring his words.
The symptoms had begun the previous day, when Alex had difficulty urinating. He got up in the middle of the night and found that not only could he not pee, he could barely walk. Then in the early morning, he'd moved to get out of bed and ended up sprawled on the floor. He couldn't feel his legs at all. He needed an ambulance to get to the hospital two blocks away.
Most frightening: The doctors didn't know what was wrong. I told them about Africa. Alex must have picked up some exotic bug.
On day three, and only by eliminating other possibilities, the medical team diagnosed acute disseminated encephalomyelitis (ADEM), an intense attack of inflammation in the brain and spinal cord that damages the brain's myelin. Alex's immune system had overreacted to a virus, they believed, shredding the myelin sheaths that protect the nerves. The cause was not some jungle bug but most likely the common cold he'd had for the last week.
ADEM is rare for a 25-year-old, and the prognosis was uncertain. Alex continued to receive heavy-duty IV steroids to control the inflammation.
Once the inflammation started to subside, Alex was transferred to another hospital for rehabilitation, where he worked four to five hours a day in rigorous physical and occupational therapy. His efforts and optimistic attitude paid off. Soon he was sitting up unaided; before long he moved on to a wheelchair, then a walker, then crutches.
Five weeks after the attack, Alex walked out of the hospital using only a cane. A few more weeks after that, he was walking unaided.
Today, Alex has a rewarding job at the American Museum of Natural History. Last fall he started graduate school part-time at City College, studying with a professor who specializes in frogs in the Brazilian rain forest. No research field trips are planned to South America yet. But I won't be surprised, or too worried, if he goes into the Amazon. It just might be safer there.
