How to make a decision like this one?

Words by & illustration by Maya Rosenbaum

Lynne, my wife, is lying down beside me. Shes got this white, thin-cottoned dress on, wide, untapered sleeves that reach her elbows; one of those unseemly dresses, patterned with alternating blue and green diamond shapes, ties at the back. As I stroke her arm, the bleached fabric brushes my palm with a little resistance. I dont know how we got ourselves here.

Tiles on the floor, Im counting them. The blue, the green and the yellow ones. I feel that if I stop counting, the doctors words will ring louder in my head and Ill have to remember exactly what it all meant. I keep being hit with what is happening, on and off, slumbering into a kind of dream state when it hits too hard. Im significantly calmer now, but the waves of shock havent yet sunk out of my body. Lynne fell into a coma about two weeks ago. Our car was hit by a Rover when she was on the road to her parentshouse. Eleven days of coma, of agonising uncertainty.

It isnt just Lynne, though. Shes also carrying our child, so really, Lynne and Lucas were both unconscious, together. She they woke up earlier yesterday, and its been 14 hours now, asleep, recovering.

All I can bear focusing on is how awfully coloured the room is. Never thought it would be like this; I suppose I always thought, when terrible things happen, you either break or you become really, really alert. But instead its this dull string of mundane thoughts that crowd my mind, my eyes fixating on matching different objects of the same colour in the room. Im completely numb.

Ive been asked to make a decision together with Lynne. This white blurry figure, the doctor, rushed in with this phrase, several days ago, this thing that we will have to answer to and decide. We dont have masses of time, but before Lynne woke up conscious yesterday I was told there was a chance Id have to decide this on her behalf, somehow. We didnt even go into the legal implication stuff; she woke up shortly afterwards. I cant imagine what would have happened had she taken a few days longer. After sleeping a few hours Ive spent the past 7 hours since the moment she awoke looking at Lynne, wondering to what extent she must still be Lynne, must still feel like Lynnewondering to what extent I am still me. And wondering what Lucas must be making of all this, breathing poorly oxygenated second-hand air from this little cramped room.

Several days ago, this is what happened.

‘Mr. Hadyn, after the examinations we conducted,




Now Im not quite sure what state I was in, because I know I was unable to look at Dr. Fadden. What I resented was I resented that this was his job. That he was doing his job, and that I, in that same moment, was living my life. There were a few junior doctors behind him; they werent looking at me either, probably out of discretion, but I think they were there for the training. How you do these things.  

I thought he was going to say Lynne wasnt well enough to show any signs of partial regaining of consciousness, that after the tests, it seemed her brain wasnt responsive enough to movement, music or voice to expect her to wake up anytime soon. That she hadnt moved up the Glasgow Coma Scale at all since the crash.

But he didnt say that. He didnt say that at all.

He said,

Your wife is in a continuing comatose state. However, according to todays tests, we are seeing clear signs of increased brain activity, showing responsiveness to pain and to the sound of your voice. There is a possibility that such signs, eventually, pre-empt a recovery in which she regains partial or full consciousness.

He folded the page of Lynnes graphs over his board and started skimming over a second page. He said along with Lynnes tests theyd done another scan of the baby, and that all his rates were steady and unchanged. But then he said this thing. That theyd found something else during this new anomaly scan, something which was unrelated to the accident. He said theyd found that Lucass spine wasnt developing properly and diagnosed him with SpSpina bifida.

Id never heard of this condition. He tried to explain it to me several times, in different ways I think, – the membranes around Lucass spinal cord werent closing completely and would leave a gap in his spine. But I was already too far away from that room and from that doctor to take anything in. Id entered this other space where however hard I tried, I couldnt piece his words together. It all seemed so complicated. He explained that life with this condition, if Lucas even survived the birth, was unbearably excruciating and that his case was so severe that he would be permanently disabled.

He asked me to consider the implications of such a life for our child and to start thinking about what decision we would make that we were still within the time frame for a safe termination procedure. He said wed, of course, wait a few days in the hope that my wife would wake up.

What do you think you might want to do? I was waiting for this next line; but it didnt come. He left the room and left me with the clipboard of graphs and scans.

I wondered, in her unconscious yet alive state, how much Lynne could hear of this; how much rage or shock or sadness must be spreading through her body at this moment, burning to be expressed. Hed said that there were discussions that should be had in the event that Lynne didnt wake up, if we were to have the operation. Something about deciding on behalf of a patient, the exact term of which I cant recall. He was talking about me and our extended family potentially legally deciding on behalf of Lynne, forgetting that this decision would also be on behalf of Lucas. This miniature brain that was forming and growing a little day by day, probably progressively numbed by the lack of Lynnes activity.

6 hours later, I am still looking, now, at Lynne. The longer I watch the covers over her quiver steadily up and then down an odd sense of peace at this point the stronger I realise I really dont know what Lynne would want. We never spoke of alternatives, of something going wrong with Lucas. I can tell you everything I know about Lynne but in this moment, I cant tell you, even remotely, where her mind would be; whether shed hesitate, whether it would be out of the question to even consider the operation. I wonder, after these years spent together, living alongside, whether we ever got close to speaking about the real things of life, the what would you do ifs. We never spoke about those.

There was this one year, about two and a half years ago, when Lynne and I drifted apart. We had lived together for some months before that, while we had rented her apartment out for the extra income. When the tenants finally left, she moved back in to live closer to her mother, and as the months went on, we grew apart, each month disconnecting a little more from each other. We loved each other greatly, still, but it was as if something was wrong in the timing that year. Nothing significant had happened and I think in the beginning neither of us really clocked that things had begun to change; it was a slow progression. We never spoke or saw each other less particularly; but it felt like when we would speak, we werent speaking about anything, not really. There was the distance. Several months on, I began to think it was because we had spent too much time together feeling unhappy about various things. It was an unsteady time in many ways, and through it we had shared our problems; oddly, it felt as if we had found out too much about each other, too much of the mental torment stuff. Once it had been shared, it took over the space we lived in; we couldnt talk about much else. It was like we knew too much, somehow. I think Lynne thought the same, and though we never spoke about it, it was a tacit, complicit understanding that we would both take the time we needed. After a few months, I remember thinking that somewhere along the line, there must have been someone else.

Im trying to wonder now, if none of this had happened, and if our trip to the hospital had been a routine scan, what our conversation would be regarding Lucass news. It seems like such an unimaginable situation, two people having to decide on a third; for a third. And yet even before that, two people having to decide and agree together: Lynne and I, having lived our lives side by side, might now have completely different visions of what our lives will be like from now.

See, I dont think we should have a child who is destined to lead a painful, restricted life. I dont think its right. I picture the final verdict well give the doctor over and over and feel this dreadful mix of guilt and panic when I realise I am setting the scene of the outcome of my side of the decision. Because throughout the hours that passed by since the doctor rushed in, theres been a part of me that feels that Lynne would want to go ahead with everything, that she would think it so unimaginable that I could consider ending Lucass life that in that moment, she too, would feel as though she didnt know me at all. That theres a slight chance that in voicing what I believe to be right, she would be left completely speechless. Speechless at the fact that, essentially, we would have got to the point where wed be discussing Lucas. Im starting to think Lynne would not understand at all. Im starting to feel that Lynne and I might be drifting apart again, even as she lies steadily sleeping. Im afraid of what I will have to say when she awakes, afraid of what will happen one, two, three years from now.

My wifes hand is resting, propped against the side of her stomach. I wonder what part of Lucas would be pressed against her hand if I could see through the skin of her stomach. We never meant to name our son before he was born. But then the name Lucas fell into the picture, and it just stuck with us. Im not sure which words to use to say to Lynne that I wont want this life for my son. I dont think there can ever be any right combination of words to say something like that.

This will divide us, somehow. Whether we talk or cry for hours, we will mourn Lucass health and we will also mourn some other, more complicated loss – that Lucas was to be the start of harmony for us. The loss of this rare feeling between two people, that things have finally come together.

Lynnes head moves over to the other side as she drops her hand on the bed. I ring for the doctor as she starts to wake up, as had been instructed. She opens her eyes and I smile over at her, moving to the bed to sit next to her. She reaches out for my hand and holds it, smiling back. For several extended seconds, I look at her and Im pulled back to this memory of when we were both younger, thinking that in this very moment where we find ourselves, theres something of that youth weve lost.

As I look at her still, I see theres something abnormal that has come of this situation; theres this new fear thats been instilled in me which Ive never felt with Lynne before. A fear of how to speak to Lynne now, of which words to use. This fear of imminent rupture, that the words I choose might all come out very, very wrong.

Claire Martin is from London, works in human rights and enjoys moving between different world cities, eavesdropping along the way on many outrageous and inspiring conversations...