Like most of us, Mayank Sharma's earliest memories come to him in fragments, like filmstrips missing frames. "I remember crawling up a flight of stairs on all fours, but I don't remember the effort, or the pain or the sense of achievement I felt," Sharma says. "Can you really call that a memory?" Sharma might have to. These are some of his earliest recollections — and they're about two years-old.
In 2010, Sharma contracted tubercular meningitis, a nasty cocktail of tuberculosis and cerebral inflammation that attacks the nervous system. While he was recovering in a New Delhi hospital — right now, India accounts for a fifth of all tuberculosis cases reported globally each year — his family realized something strange: he didn't know them. He didn't know anyone, not even himself. Sharma's memory loss was total; all his experiences lost. We first spoke to Sharma while creating a short documentary on his quest to rediscover his personal history with Facebook's People You May Know feature, reconnecting with friends and family in an attempt to retrieve his past.
Sharma may know most of his life stories, but that doesn't mean he remembers being a part of them. "During my recovery, everyone was standing around me trying to make me remember," he says. "Doctors say these things I think I remember now are just from these tales. That's why I can't picture myself in the scenes. It's not me remembering from the past, but it's me remembering what others have been telling me."
"I remember crawling up a flight of stairs on all fours, but I don't remember the effort, or the pain or the sense of achievement I felt. Can you really call that a memory?"
Even creating new memories was a struggle at first, which is why it's so hard for him to identify his now-earliest memory, even if it happened just a few years ago. "I'd say the most vivid is of being presented a wheelchair just before my 27th birthday," he says. "I was happy because I could now move around more often, but for the first time I noticed the camouflaged emotions of my folks and kid brother. It took me a while to understand that a wheelchair isn't a parent's favorite gift to their adult child, and I remember telling myself that I'd been sick long enough and that it was time I got back up on my feet and fast.
Tuberculosis is a bacterial disease passed from person to person through the air, but the majority of people carrying the germs never actually develop the disease. Instead, it lurks, waiting until it's agitated by a weakened immune system; some can harbor it more than 30 years before it's activated, others can stave it off forever. "Most people's bodies have the ability to control the infection, and that's as far as it goes," says Jeff Starke, the director of the Tuberculosis Clinic at Texas Children's Hospital. "When the immune system is compromised, then it can occur wherever the germs have gone. It can literally hide in your body for years."
As germs enter the body, they immediately start to spread; an infected person can have tuberculosis bacteria in their lungs, liver, intestinal tract — and brain. Tubercular meningitis, then, is the ultimate form of bacterial meningitis: 20% to 50% of its victims die and survivors are often left with significant neurological defects. Where most forms of meningitis affect the top surface of the brain, tubercular meningitis affects its base, home of the cranial nerves and chambers that control blood circulation, vision and memory. As in Sharma's case, many victims also develop hydrocephalus when a fluid backup occurs in the base of the brain following the inflammation, a typical complication of tubercular meningitis, Starke says. Though amnesia this extensive and long lasting is extremely rare, complications are much more the rule than the exception.
"There's no way to predict which way these complications occur," Starke says. "It really depends what's going on with the patient when they're first diagnosed that predicts how likely they are to have severe problems: stroke, hearing loss, vision loss, memory loss, etc. Unfortunately tubercular meningitis is hard to diagnosis and is often delayed in many parts of the world."
In some cases, the memories return. Sharma's have not, and the doctors are "confused as hell," Sharma says. "The brain damage isn't that extensive. It shouldn't be causing this problem."
His doctors are still optimistic that he'll regain his memory someday, but until then, Sharma will keep crowdsourcing his backstory from family and friends, even the parts of the past he'd rather not know about; a few of the old acquaintances he's reached out to have come back with less than positive accounts. "When I decided to reach out to people and rediscover my old self, I knew there would be some unpleasantries," he says. "But I think it's a small price to pay for almost three decades worth of learning experiences."
Unfortunately, some of the more agonizing aspects of his recovery are still ongoing. Only occasionally will he leave his family's home alone for short walks and he's only allowed exercise under supervision, but he has returned to work writing articles for Linux Format, PC Plus and Windows: The Official Magazine. He's even created his own website, complete with a portfolio of brain scans, inviting anyone interested to peek inside his head. He shares any medical advice received through the website with his neurologist in hopes of finding new pathways to recovery. If he can tap into the collective knowledge of the people he used to know to help restore his memories, why not leave it up to us to help him figure out how he lost them?
Watch Mayank's story