HOLDNG IT TOGETHER became a priority for me that week with Charlotte since she became very upset if I cried, or showed too much negative emotion.  So I tried to contain that to nighttime when I was behind a closed bedroom door. It was hard though – really hard – to be without Mary Elizabeth.  In the 18 years we’d been together, our relationship had coalesced into pretty clearly defined roles for each of us.  She would jokingly tell people that she was responsible for long-range strategic planning and I was responsible for tactical execution.  That was usually repeated to me when I was engaged in some type of manual labor, while Mary Elizabeth stood by watching.  We came to big decisions together, understanding and valuing each other’s opinions but the strategic/tactical construct gave us some context and kept us sane.  Now, with Mary Elizabeth gone, I not only missed her companionship, but also her collaboration.  On more than one occasion, I had the impulse to pick up the phone to call her, or send her an email, only to realize that she wasn’t there.  I really felt bereft, but also had to soldier on for Charlotte’s sake.

One of the decisions I had to make was when Charlotte should go home and how she would get there.  I really didn’t want her to go, but of course realized that this was no place for her and she needed to get back to her routine as soon as possible.  I asked the doctors if I could be away for a day or two to take her home and they strongly recommended that I not go away at that point.  Her 11th birthday was coming up and I decided that it might be fun for her to spend her birthday in London, and then go home as soon after that as she could.  Several of our friends had volunteered to fly over to fetch her and escort her home.  My boss, who happened to be in London that week even volunteered.  But I left the decision up to Charlotte who chose one of Mary Elizabeth’s best friends whom she had known since the first week of college.  Gary was an anesthesiologist who had decided mid-career to go to business school and start working on product development for pharmaceutical companies.  He was at the time between jobs and had immediately volunteered.  We were so grateful and he dipped into his reserve of frequent flyer miles to make a round trip reservation for the coming Sunday – the day after Charlotte’s birthday.  I was relieved to have that decision behind me, but at the same time felt in the pit of my stomach the dread I would feel sending her home and being separated from her.  But she was eager to return home to her friends and school.

As the days wore on, I began to understand that a coma and a vegetative state are two very different things.  When most people think of comas, they think of somebody lying in a bed, perfectly still, hooked up to monitors and usually a respirator.  At least that’s how it’s played on television.  But as they stopped sedating Mary Elizabeth, we began to see movement. Not purposeful movement, but movement nonetheless.  This combined with her very occasional responses to outside stimuli gave us great hope. I expressed that hope to the doctors and nurses, who smiled weakly and said “oh, yes, that’s good.”  But I got the impression that they were just trying to be nice and were humoring me.

Every few hours the nurses would come along and test her responsiveness.  While she would occasionally follow commands like squeezing my hand or raising her eyebrows, this was done with such inconsistency as to be negligible and not part of the calculation.  I suggested to the doctor that perhaps it was because we were characterizing it as “following commands” and Mary Elizabeth hated being told what to do and perhaps we should rephrase it as “responding to suggestions.”  I was kidding, but I wasn’t sure the doctor got it.

At one point, I asked her a question and I saw her head nod almost imperceptably.  I immediately asked her the same question again, hoping to get another reaction but she was gone and there was no response.  It was the same with hand squeezes – sometimes they would be in response to a question, and sometimes they would happen spontaneously.  I asked the doctor about this, hoping to get some clue as to whether this was a good sign or a bad sign.  It was of course no sign at all, and as each case was different, we had to – you guessed it – take it one day at a time.

It was in those early days that I began to think about Mary Elizabeth’s coma as her being deep underwater like a mermaid.  She would usually be completely out of sight, but occasionally I could catch glimpses of her as she came closer and sometimes, very rarely, she would come to the surface and interact, only to dive down a second later, vanishing into the deep blue sea of her coma.  It was a romantic notion, but one which fit with her responsiveness at the time, and I preferred to think of her as a mermaid, swimming free and sensate in the sea, than my wife lying unresponsive and possibly brain-damaged in a bed in a hospital in London.