What if HM had a Blackberry?

Coping with amnesia, using modern technology

Posted Dec 18, 2008

HM, the famous neuropsychological patient who couldn't form new memories, died earlier this month, and his memory impairment was every bit as debilitating as the textbooks say it was. A classmate from grad school, call him EL, once drove HM from his Connecticut nursing home to MIT; to pass the time, EL asked, "Why was Cleopatra so screwed up?" HM, said he didn't know, and laughed when EL let loose the punch line -- Freud laced with ancient Egypt -- rip: "She was the Queen of Denial". 5 minutes later, EL asked HM the same question, and once again HM had no idea; EL repeated the punchline and HM chuckled again, over and over all the way back to Boston.

For HM, anterograde amnesia, the disorder that keeps a person from forming new memories, was devastating. He was never able to hold a steady job, never made new friends, and spent most of the latter part of his life in a nursing home. But anyone who's ever seen the film Memento might wonder - did it really have to be that way for HM? Or could someone with a bad case of amnesia concoct an elaborate Memento-style system of notes as a way to cope?

Although HM himself was unique - his disorder the product of a type of surgery for severe epilepsy that is no longer performed -- anterograde amnesia itself is not; it can occur in passing as a side effect from medication, and in more lasting form as a consequence of brain injuries. And, as it happens, I recently had a chance to interview another person with that very disorder, by the name of Patrick Jones.

Jones, aged 37, first started having problems when he fell off of a swing when he was 12; since then he has suffered from a series of at least 7 more concussions, culminating around 2002 in a severe case of anterograde amnesia - the same thing that HM had suffered from -- and a diagnosis of TBI (traumatic brain injury).

The first thing to say about Patrick is that he is one of the most optimistic people I have ever encountered. Like the late Christopher Reeves, Patrick has an almost uncanny ability to find the most positive perspective on anything. When I asked him what was the most difficult aspect of his disorder, he pointed to his interaction with his children, and the trouble the amnesia posed in his efforts to follow their lives, "I don't know if they will be 3 or 30 when I come round the corner", he said. "But", he continued, "I see them, see how they act, and I interact with them exactly where they are then, at that moment."

But optimism alone can only go so far. Where the sweet amnesic that Drew Barrymore played in 50 First Dates was passive, living the same day over and over again (at least until Adam Sandler's character came to the rescue), Patrick is a man of action, determined to live a cumulative life, even if his memory itself is not cumulative. He hikes in the Rockies twice a week to keep fit, but more than that he holds a steady and important job that demands not just creativity, but originality: Patrick works as a Deacon in a Catholic church, writing and delivering sermons at least once a month.

Even more remarkably, Patrick didn't become ordained until after his amnesia was already in full force. How does he do it? By being a techno-geek! In Patrick's words, his computer and his iPhone are "the equivalent of a motorized wheelchair for a quadriplegic". Like Leonard, the protagonist in Memento, Deacon Patrick uses a system of notes and reminders. But a body has only so much room for tattoos; the Deacon prefers Mac OS, and, especially, a pair of software programs called Curio, a kind of mind-mapping software that allows Patrick to draw diagrams of interconnected thoughts and Evernote, a bit of software that allows Patrick to access and enter his notes anywhere, anytime. (I myself use Evernote, and it was through them that I learned of Patrick).

What's it like? Here's Patrick's account of working with me:

"First, I got your email and had no idea who you were or why [we] were talking. The history in the email didn't help much. So I searched "Gary Marcus" in my Mac's Spotlight, which turned up an Evernote on who you are and why we're interacting, who put us in touch with each other, a log of our interactions, etc."

Each time Patrick engages in a topic, he has to use a machine to refresh his memory. I would find this to be an incredible pain, but Patrick has no real choice, and characteristically he soldiers on, writing monthly sermons and running a website www.BrainInjuryChaplain.com that features an iPhone donation program (which as he puts it, allows "your old iPhone to be a brain in someone's pocket").

HM may have had to lead the same day over and over again, but with the help of modern technology, Deacon Patrick doesn't.