I come Unto This Last.

On the 9th of March a 36 year old father was rushed to hospital. 3500 miles later at the exact same time, on another continent, another 36 year old father was rushed to hospital. They both died on that day, (although this would be a more technical pronouncement for the latter two days later) both leaving behind loving wives, daughters and one a son. One was a brain surgeon with incurable lung cancer the other with incurable brain cancer. They were born at the same time and they died on exactly the same day. Both wives wrote of their husbands, both exceptional in one way or the other. What connects them is the dead man’s book- When Breath Becomes Air– a story known only too well for survivors of this day.

Here is my first hand account of when breath becomes air:

It is twilight and you stand in a hedge wearing a head torch with your five year old son. You are soon joined by a waddling girl, she too has a head torch, you are whispering in her ear and you are looking for foxes which have just run into your friend’s garden. Now you are laughing and I am pestering you to get going. We have to get back to London so you have enough time to eat in order to allow a two hour window for your Chemo pill to settle. You assure me you are coming but make no sign of moving. Then you say the strangest thing. It’s only now strange with hindsight. You say: ” I don’t want to leave, it’s just so beautiful”- I register this but don’t dwell on it. We leave amid beeping horns and waving hands out of windows and promises to be back in a few weeks for your Godson’s christening. We put our favourite tracks on the stereo and chat while our children fall asleep to our familiar voices. Mostly we chat about moving house and what car we will need if our third child were to arrive at some point. I pull up and we decant each child into their beds.

 

We meet again in the kitchen, still in a mess from having up and left so suddenly that morning. The radio is still on and I remember that you’d said when Will Smith came on the radio signing ‘Miami’- “You forget that Will Smith can really actually sing”…. I should have known there must have been something wrong with your poor brain after that comment. I smiled and raised an eyebrow and you smiled too and sipped your coffee.

I go upstairs and finish building Flynn’s lego world which I have been secretly preparing for months, ready for the great reveal the next morning. I stay there for an hour and am so taken aback by the fact that you are not calling for me to join you (usually after ten  minutes) that I go to investigate. You tell me you are not feeling very well so I put you in the shower and then to bed. You throw up in the shower in such a violent way that it must  only be the kind of vomiting one does when about to die. But I assume it is the chemo and put you to bed with a bucket while I call the hospital. You continue to do this all night but they tell me it’s normal.

The next morning I wake you to tell you I’m going on the school run but I will come back and then drive you to your appointment. You are drowsy and unresponsive but give me a slight nod. On the way home I have organised with Tara that she will come and take Celeste so I can take you to hospital. When you don’t speak to me when I return to your bedside I call an ambulance. They take 40 minutes to arrive and they can’t get you to say much either. You open your eyes but only momentarily. Celeste is sitting on a black armchair in our bedroom and although she is only Two, she asks- “Is he going to be okay Mummy”? “Of course he is” I tell her. Then Tara arrives, on my staircase, ashen faced, and I burst into ears when I see her. It makes no sense to me why I would do this if I really thought you’d be fine. I tell the ambulance crew that I will follow them to the hospital, I’d done this before except this time I don’t pack shoes or things that might be needed. Instead I help them dress you. I choose the faded black T-shirt you’d worn when I first met you. But it was faded and worn now because of endless washing after I told you you could never get rid of it. The next time I would see it would be when a nurse fished it from a bin in a resuscitation room in two pieces. Your mother would then take it home and wash it for me, so that I could keep it, despite the fact that she would never see you again. I told her that I wanted it to keep its smell.

I arrive at the A. and E. desk and when I give my name at the desk, the receptionist knows exactly who I am and ushers me into a room no-one should ever see. What happens next reaches the absurd.

I am left waiting for no more than a minute and two men in scrubs enter the room. The first is a large, senior looking Indian man, clearly the one in charge, the second, a skinny white man. The first man looks as serious as I have ever seen another person, he looks like he has been crying, as does the other. They ask what drugs he was taking- I jump to an immediate and positive conclusion that this must mean that he’s still alive- if they are so worried about this. Then they tell me something has happened in the ambulance on the way to hospital, they talk about pupil dilation at great length and I can’t process what this means or if there is any hope. I remember thinking , I ‘m not ready, I know it’s coming but I’m not ready, not yet. My Mother-In-Law is on her way and so I’m thinking, she’ll understand what they are talking about, she can explain it.

I ask if I can see him and they say yes. We go into a room called a resuscitation room and there are so many people next to my husband and he’s attached to a ventilator. I am immediately aware of his huge size and how far away he looks. I wondered at that point- will I ever see you again- I already missed him.

I am consumed by pure and abject fear. So much so that my muscles twitch, I need the loo, but also to throw up. I am shaking very slowly and hot and freezing cold at exactly the same time. A nurse is crying and when I ask this crying nurse why he is attached to a machine she says- Darling your husband is very very sick. So I shout at her: “Of course he’s sick, he has a brain tumour, but he’s not dead”. There is a very nice nurse there called Josh I think who’s chatting to my Mother-In-Law. We are told that James has suffered a massive brain bleed so severe that they’ve decided to take over the breathing for him, a scan to be done in the following twenty minutes will revel the extent of the damage and also if it is fixable by an operation. And so we wait.

Two hours later. James is transported from Chelsea and Westminster to Charring cross hospital to a ward most people will never see. My friend Alex and I joked that when caught in one of the lifts with a doctor and you press the eight floor, they slowly drop their heads. James has a pointless and unnecessary operation and we wait to see if he will ever wake up. Some forthcoming register with few people skills tells us that we should wish that he never wakes up, he is what James’ wonderful surgeon Henry March would so rightly call “wrecked”.

 

We sat by the bed with styrofoam cups, iPhones, and beeping monitors, for the next two days. There were always a few people by James’ bed. Most people waited their turn in the waiting room but everyone got their time.

Initially I got a shock by all those people in the waiting room, sometimes twenty/thirty people. My sleeping was little and erratic, so if I wondered in at any time, 4.25a.m. for example there was always someone there, mostly boys, sometimes drinking, sometimes playing something or other, sometimes just sitting. Sometimes I would smile at them on my way to the loo or sometimes I would join them.

At nights it was only really me and his mum by the bed, everyone else was either in the waiting room sleeping on those awful red leather chairs  or had gone home for their few hours off.

One day when my friend Tara was sitting with James and I’d gone to get some tea, I came back to the bed and quite ignoring her, I had the most overwhelming urge to smell James so I put my face close to his neck and inhaled. When she saw this she gasped and collapsed into her husbands arms. I slept with James in his bed each night, often not sleeping but chatting to Stephen his nurse. I remember knowing they’d allow this for so long but eventually they would be taking him away from me so I had to make the most of those moments. I knew I had two nights tops and I did’t want to miss a second.

The next morning, they would declare him Stem Brain dead by inflicting pain on him to prove that he had no brain left to feel pain. They made us be witness to this. Two hours before this moment, I put some earphones to his ears and played his favourite music through them. I then leant in and whispered- I’m letting you go, fly away. I can never know for sure but I’m convinced that that is the honest moment when breath became neither breath nor air. I didn’t stick around for the second tests. He’s gone. I walked out of that building and he left with me.

Then I got a bus home. I opened the door, I  looked around my house, and nothing moved. This was day one. Ground Zero. This is what happened to you.

Since that day I continue to talk about James and still I watch people flinch. I do this mainly for Flynn as Celeste as one day their memories will fade, especially those of Celeste who may never have any. It is important that they know their father. In time they will learn about him through this blog and the stories of those in the waiting room with red leather chairs. The best thing anyone ever said to me/them was in the Letter that Tom Connolly wrote to them, published on this blog. “You may feel that you didn’t know him” he writes “but he knew you”.

 

For Marianna.