WHEN WE ARRIVED the next day, Mary Elizabeth was wearing what looked like an oven mitt without a thumb on her left hand.  It was made of a quilted black fabric with a velcro band around the wrist.  She was lying quietly in the bed when we arrived, but had apparently been thrashing around and trying to remove some of the many tubes going into her body. This came as a huge surprise to me since the only movement I had seen up to that point had been slight twitches, and occasional hand squeezes or eyebrow lifts.  They told me it would be ok to remove the mitt while I was there – I just had to be vigilant to be sure she didn’t remove anything since she had at least two IVs, the tube from the ventilator, a blood pressure cuff, oxygen monitor and all the leads for the ECG.  I took the mitt off her hand and her reaction was almost instantaneous.  Her hand moved up to her face, seeming like it had a will of its own and began fiddling with the ventilator tubes.  I gently guided her hand away from the tubes and held it, asking her to squeeze it.  There was no response, despite my repeated requests.  As soon as I let go, up it shot again, a hand on a mission, trying to dislodge the tube.

This didn’t last too long (it was pretty tightly taped to her face) and then she did an extraordinary thing.  She scratched her nose, and then smoothed her hair and put it behind her ear. She repeated these movements again and again, almost like an automaton. It was amazing to see coordinated movement – especially gestures which I had seen countless times and recognized – but disconcerting as well since these movements were seemingly without purpose.  She moved her left leg as well, bending the knee slightly and rotating her ankle.  Again and again she performed the movements, almost in the same sequence.  This activity underlined the fact that Mary Elizabeth was alive and capable of independent movement, which was significant since I worried that she would a) die or b) remain in a persistent vegetative state.

As soon as the doctor came around, I mentioned this to him with great enthusiasm and excitement, only to be met with the calm response that this was quite normal.  Quite normal for him perhaps, but I didn’t spend my days hanging around people in comas, so I had no idea that people could move like that and still be in a coma.  I learned about the Glasgow Coma Scale (GCS) which measures responsiveness on a number of fronts.  Most of us (on a good day) have a GCS of 15, meaning that we respond to commands, pain and other stimuli and that we can speak, see and interpret the world around us.  At that point, Mary Elizabeth had a very low GCS of 5 or 6 (I think you get a couple of points for having a heartbeat) since she could neither see nor speak, didn’t respond to commands or pain, and wasn’t yet breathing on her own, although they suspected that she could if taken off the vent.  The GCS didn’t take into account random muscle movement, but I did.

The doctor also reported that while the bleeding had definitely stopped, her brain was swelling in response to the hemorrhage and would cause big problems if it didn’t stop, since our skulls conveniently protect our brains from harm, but also provide a rigid enclosure which presents an immovable barrier to a swelling brain.  Finally, they were also eager to take her off the ventilator, since she was managing on her own, and having a tube going down your throat for too long can damage the vocal chords for good. The problem with comatose patients however is the apparent inability to maintain an airway, so they were recommending a tracheostomy, cutting a small hole in the trachea, and inserting a tube through which air passes, leaving the mouth and nose out of it.  It was for some reason hard to come to grips with. Everything up to now had been pretty noninvasive – even the intubation, but a tracheostomy was surgery, involved a scalpel and would leave a scar.

Notable was the fact that I wasn’t being offered the opportunity to make a decision – they had made it quite clear that they were informing me of their intention – not asking for my permission.  I felt keenly again Mary Elizabeth’s absence.  I wanted to ask her if it were okay, to weigh the pros and cons as we usually would do and to come up with a mutual decision.  This wasn’t possible of course, but I tried to imagine she was awake and asked as many questions as I could, satisfying myself that this was absolutely necessary and the risks of doing it far outweighed the risks of not doing it – up to and including death.

They wanted to take her away for an MRI which they said would take hours, so we put the oven mitt back on her hand and said our goodbyes, heading off to Central London for some shopping and sightseeing.  Our first stop was Fortnum & Mason in Piccadilly, where Mary Elizabeth and I had stopped many times on previous trips.  It’s always an amazing experience and having Charlotte along made it fun.  We wandered through the children’s clothing and toy departments before heading downstairs to the food halls, which though not as fancy as Harrod’s, were stocked with all kinds of tempting and fascinating items – including much to Charlotte’s fascination – candy made out of and containing insects, spiders and scorpions.  I found them to be a bit much.  But it was a welcome diversion to what we had been through and it was fun to be just like everybody else – browsing among the well-stocked shelves and enjoying the Christmas decorations and holiday ambiance.

We then headed to South Kensington to Harrod’s where we headed right upstairs to the children’s department, where we had originally been headed the previous Saturday with Mary Elizabeth but had been foiled by traffic.  In all our previous visits we had enjoyed looking at all the school uniforms – each of which was quainter and more charming than the previous one.  From straw hats with grosgrain ribbons to jackets with contrasting piping, plaid jumpers and kilts – Mary Elizabeth and I couldn’t wait to see Charlotte wearing outfits such as these.  Sadly though, because it was Christmas, the uniforms section had been replaced by fancy party dresses for girls.  We spent some time looking through the racks and were struck by the difference between U.K. styles which were clearly designed for children, and U.S. fashion where dresses in Charlotte’s size simply looked like smaller-sized adult dresses – along with plunging necklines, short hems and adult sheer fabrics.

We spent most of our time however in the amazing food halls in the basement, wandering from room to room ogling all the goodies on the shelves and behind glass display cases.  The beautiful decorations on the walls and ceiling enhanced the experience.  We made a few small purchases for the room, and left for a leisurely stroll through the streets of Knightsbridge and Sloan Square, taking in the sights and sounds of the fancy blocks of this fancy neighborhood, contrasting the streets of the East End where we had been spending most of our time.  We found our way back to the tube and back to the hotel, where we had dinner in the room and watched television before going to bed, wondering what the next day would hold for us and Mary Elizabeth.

Go to next chapter: Zees ees a Guest ‘Ouse