My Boss With Stephen Hawking Disease

In July 2002, I interviewed for a project manager position in physician and immunologist Alan Houghton’s research lab in New York City at the Sloan-Kettering Institute. He was a professor at Cornell University, department chair, and head of a laboratory with two dozen people whose funding was equivalent to that of a small biotech company.

When I met him, Alan was strapped to a robotic wheelchair whose weight seemed to exert its own gravitational force. His assistant warned me not to try to shake his hand because he couldn’t move it. Alan suffered from amyotrophic lateral sclerosis (ALS) and had been chairbound for 7 years. He seemed vulnerable in that absolutely motionless state, but I was aware of his eyes as they scrutinized me.

The second thing he said was ‘I work 2 days a week,’ and I knew that what he was saying was, ‘I’m alive.’

In the first 5 minutes of the interview, he had already ascertained what I knew about the job, why I wanted it, and how I intended to fulfill the role. When he finished with the standard questions, Alan swiveled his chair and took me to the lab to meet his group. He disappeared down the hallway of the research institute, navigating the narrow corridors with the skill of a New York City cab driver. Challenged to run behind his chair, I yelled, “Coming!” In the lab, Alan swerved around benches, orange disposal bags, and tall round chairs to introduce me to everyone.

Alan’s chair was the flying carpet that freed him from a declining life in bed. A black sensor the size of an Eppendorf tube sat at the end of a flexible arm in front of Alan’s chin and played the role of a computer mouse. He controlled the chair’s movements by nudging the sensor with his chin to select and activate the desired commands. It was a sort of miracle, I thought, that technology and Alan’s chin worked together to allow him to move independently.

Back in his office, he asked me: “Where do you think you’ll be 10 years from now?”

I was honest: “It’s the first time I’d be a research project manager, so I’ll give you a better answer in a year.”

The next time I saw Alan, it was a few weeks later, on my first day working with him. He welcomed me to his office with a short list of the projects I would manage. I sat on a chair next to his and became a spectator to Alan’s modus operandi. To introduce me to the projects, he gave his computer short orders, like a soft tam-tam of a children’s drum: “Open,” “File,” “Third one down,” “Send.” When he was done, he lulled it with “Go to sleep.” Seeing my eyes still fixed on his computer screen, Alan explained: “Dragon is the voice-recognition program that enables me to work independently on the computer.”

Starting that day and continuing for the next 4 years, Alan, Dragon, and I worked together for at least an hour every day. I looked forward to this trio work. We worked on grant applications and reports, papers, presentations, lectures, letters of recommendation, forms, budgets, and lots of other things. Research funding, students, and ideas moved in and out rapidly. I felt that I’d become the happiest project manager in the world.

“Team Alan” included his personal assistant, his home health aide, his wife and sons, his closest collaborator, and many other people in the lab, the institute, and the hospital, all of whom valued and cared for Alan. His innate dignity, self-reliance, and respect for others never made him an easy patient. It was months after I started to work with Alan that he timidly began to ask me for help: to scratch an itchy eyelid, to straighten a twisted foot, or to pop a candy corn in his mouth.

Alan’s sense of gratitude and humor never ceased to touch me. One morning at 7 a.m., after we had spent the night working on a grant application, Alan asked me: “Would you like to call your husband and tell him you are late?” We burst together into a relieving laughter.

A few years after I started working for Alan, I walked into his office and I found him reading a scientific article about ALS. I asked: “Alan, is there any good news about Lou Gehrig’s disease?”

“I call it the Stephen Hawking disease,” he corrected me, and his lips extended effortlessly into a large, hopeful smile. After fighting this illness for more than 10 years, it was obvious that Alan had a survivor’s form.

I left Alan’s group in 2006 because my husband got a job as an independent investigator at a research institute in California. When I said goodbye, I left a kiss on a close friend’s cheek. I took Alan’s resilience for granted and abolished any dark thought that his disease could cause his condition to deteriorate. A year later, I was shattered to hear that he had lost his lung power, voice, and—consequently—his “Dragon’s help.” Alan was out of the lab for a long time. His e-mails became shorter and less frequent.

Eventually, I resettled in Melbourne, Australia, with my husband and daughter. I returned to New York in 2011 for a scientific session and paid a visit to Alan. A long, wrinkled tube bound to his neck fed Alan life-supporting oxygen. One-third of the room next to his bed was filled with instruments more complicated than those in any doctor’s office I had seen.

The first thing Alan said to me was “I missed you!” Clearly, he had forgotten the episode when I spilled Coke on his shirt and tie right before one of his lectures. He could have no clue just how much more I missed him in those intervening 5 years and regretted that his health was declining.

The second thing he said was “I work 2 days a week,” and I knew that what he was saying was, “I’m alive.”

I planted another kiss on Alan’s wet cheek and returned to Melbourne, already planning my next visit to my dynamo boss with Stephen Hawking disease.

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