Beyond the High Blue Air. Lu Spinney
coma, but every moment of watching Miles is geared to this end. I am consumed by the hope of it.
Now it is terrible to watch him make that movement. Each time I want to stop him, No, Miley, no, don’t do that, please don’t do that thing. The innocence of it, and the horror; his brain is in chaos and all the while he stretches out his arms as though he’s just about to get out of bed after a long nap. Decerebrate posturing is the medical term, Dr. Stizer tells me later when I ask him; sympathetic storming, or just storming, is the more common description. Such a strange and beautiful word for it, I say to Dr. Stizer, and he looks at me quietly. It will pass, he says. What he doesn’t tell me is that DAI may contribute to it, or brain stem injury, that doctors fear it because the action itself may suggest further injury is taking place in the brain. I don’t know that yet and for the moment hope regains the upper hand—the doctors have said it will pass and, most important, it has shown us he is definitely not paralyzed.
I have a photo of Miles lying on a sun bed by the pool in France. It was taken from the lawn above the pool and he is looking up at the photographer wryly, caught off guard just as he was surfacing from a post-lunch snooze in the sun. His body is tanned and fit, his dark hair thick and ruffled from swimming. He is stretching both arms downwards, the wrists bent back, an enjoyable long, lazy stretch. It is a precise replica of storming.
At first it was shocking to see how many tubes were tethering Miles to the world, but I have got used to them now. This morning when we visit, the nurse tells me that the doctors have decided to remove the one that passes through his mouth directly down into his airway, the endotracheal tube.
It was the first emergency tube used by the paramedics in that fearful helicopter journey. When he collapsed on the mountain slope they had to ensure he was getting enough oxygen, and the initial procedure would have been to administer it through a mask fitted over his nose and mouth. But when his pupils registered as unequal it signified a further emergency. The endotracheal tube would have been inserted, jammed down, I imagine, in the rush to save his life, before being connected to a portable ventilator to keep him breathing.
The nurse tells me now that prolonged use can damage the vocal cords over which the tube passes and since it has been in place for three weeks the doctors consider it time for removal. Please let his voice not be damaged, that warm, humorous voice I know so well. In place of the tube Miles will be fitted with a tracheostomy, she says. I have no idea what a tracheostomy is and so the nurse describes it to me. Involving a minor operation, a curved plastic or silicone tube will be inserted into a hole made in Miles’s neck and windpipe just below the larynx, bypassing the vocal cords and leading directly into his airway. It is necessary to keep his airway open and accessible, so that it can be cleared mechanically if necessary or used to administer extra oxygen when needed.
The young doctor on duty today has been deputed to discuss this with me and ask for my permission to perform the operation. He tells me that it is a simple procedure and there is very little risk of complication, that once the tracheostomy, or trachie as he calls it, is no longer necessary it can easily be removed leaving only the smallest scar. Having discussed it with the rest of the family I give the go-ahead. The most important consideration for us, all we can really think of, is that Miles’s voice should be saved; our sweetest dream is to hear him speak again in the particular vivid, engaged way that he does.
Will and I are the first to visit Miles after the operation has been performed. I don’t know what to expect but the shock of seeing the tracheostomy in place undoes me completely. I am not at all prepared for the collapse of misery it brings me to; I can only sit down and bury my head on Miles’s chest, pressing my face into his inert body to try to staunch the torrent of pain that, if I let it go, is threatening to bring this precarious thing I hold inside myself to its destruction. Will’s hand is resting gently on my back, he is talking to me. It’s okay, Mum, it’s the best thing for him now, he says, we have to try and remember it’s only temporary and the doctors say there won’t be a scar. Lifting my head from Miles’s chest I am on a level with the trachie and however right it is for him now I hate it, I loathe its monstrous, domineering protuberance. It looks predatory, fixed, foreign; it has claimed him, branded him. A hole has been cut in this strong young man’s throat. I remember the Adam’s apple that appeared in adolescence, the strange ambulations in his voice as it began to break; I remember his smooth vulnerable teenage throat. Imagine the cutting that has had to take place—surely the windpipe is cartilaginous. I stand up with Will’s arm supporting me and look down at Miles. He lies unmoved and unmoving, his face serene, the hard plastic ugly thing with its crude white rim standing proud from his throat. There is this one comfort: that of us all, Miles in his coma is at least not suffering.
Good Friday morning, and I am surprised to learn that Dr. Stizer will be performing a cranioplasty on Miles this afternoon. I would have thought that being a public holiday there would be no surgery today, but he says they will be working as usual. He has come to see me in Miles’s room, and Claudia and I listen as he tells us that the piece of skull, the “flap” that was removed to make space for Miles’s swollen brain when he was first admitted, is going to be replaced by a piece of titanium. The original piece of bone, frozen in a solution to prevent infection, was kept so that it could be copied precisely to make the titanium replacement that would eventually be inserted to protect the brain. I ask him what the procedure will involve. The titanium piece will be fixed to Miles’s skull, he says, and then stops. Looking at me closely, he continues. Are you sure you want to know the details?
Perhaps it’s unusual, but I do. I would like to be present during the operation, see it taking place, see the area of unprotected brain before it is covered, just as I wished I had been with Miles at the time of his accident. I want to understand every element of what is happening to him. I don’t want to be protected from it—why should I be? It doesn’t make me feel squeamish, nor does knowledge make the situation any more painful.
Well, Dr. Stizer says, and I can see he is choosing his words with care, I will use screws to fix the titanium plate to Miles’s skull. You mustn’t worry, he adds quickly, the screws are very short, they won’t damage his brain. They are self-drilling. When his hair grows again you won’t know it’s there.
Miles’s body, it seems, is being adapted to survive his new life. First the PEG, or percutaneous endoscopic gastronomy, a feeding tube, was surgically inserted directly into his stomach, then the tracheostomy was fitted, and now this, his skull fixed with self-drilling screws; it is as though he is being armed for survival.
Easter Sunday is four weeks to the day since Miles’s accident. I can’t help it, but the combination of four precise weeks falling at Easter feels imbued with significance, though of what exactly I’m not sure. Perhaps some atavistic stirring, that Easter is a day of hope, of a rising from the dead, of new life beginning. Lying in bed in the hotel room with Ron next to me, here for the weekend, I try to suppress the strange excitement that something is going to happen today. It feels like a private premonition that I will ruin if I speak it out loud, so I don’t mention it to Ron, and instead we talk about our plans for the day. He thinks perhaps it would do us all good to go out for lunch after visiting Miles. I can see how exhausted you are. It’s Easter, and everyone’s here; it’ll do you good to have a treat. He plans to take us to the restaurant with a sheltered garden near the Hofgarten, the beautiful Imperial Court park on the edge of the Old Town that we have often passed on our walks through the town. We can sit outside and enjoy the sunshine, he says. I’ll book a table. In my superstitious state even his suggestion seems significant; he is attuned to Miles, maybe he, too, senses that something is different today, that finally there may be something to celebrate. Spring has arrived in Innsbruck and the town has come to life, window boxes now blooming with color and the trees in the somber winter parks alight with new growth. Everything suggests renewal; surely Miles will be part of it.
As we gather together in the hotel foyer after breakfast I try to gauge if anyone else is sharing this feeling I can’t shut down. Maybe I am oversusceptible, but somehow the atmosphere feels heightened. Perhaps it’s just that Ron is right, I’m exhausted. Stepping out all together from the dim interior of the hotel into the bright spring sunshine I wonder if it’s visible to others, how fragile a group we are, how taut with uncertainty.