Beyond the High Blue Air (13 page)

She is sitting now with her chair pulled up close to Miles so that she can rest her head on his shoulder. Even though her eyes are closed it doesn't look comfortable; none of us can find a way of making physical contact with him that feels relaxed or natural. I reach over to take her hand and as she looks up at me I am shocked to see the utterly bleak, deadened expression in her eyes.

Here I am, she says, hugging my brother, mourning my brother.

It strikes me then that she has articulated the essence of our situation – of losing Miles and yet not losing him, of having to come to terms with the grief of his loss while at the same time trying to comprehend and negotiate his continued existence.

I'm with Sheila, the senior speech therapist, in Miles's room. She has just had a long session with him and she tells me she is pleased with his progress. He is exhibiting the bite reflex less and less often, she says. It is a good sign.

If only I had known. Sheila has shown us how to do oro-facial therapy with Miles, choosing a calm moment to stroke his cheek and then open his mouth very gently to run a surgically gloved finger along the gums. The aim is to give him the added sensory experience, and to accustom him to it so that he co-operates more easily with his daily oral hygiene routine. It is not an easy thing getting a patient with TBI to open their mouth.

I cried out loud when Miles bit my finger. Pain, and shock, and fury; it felt vicious and intentional. I left him and stood at the window of his room with my back to him and wept. Fury followed by the misery of guilt. Such an invasion of his privacy; how infuriating must it be to have me prodding and poking about in his mouth, how dare I now feel anger at his response. I'm trying in vain to rationalise the deep hurt I feel, what felt like his furious rejection of me. It was frightening, the force of it and the pain. The dent in my finger lasted for days.

Now I think back to the time in Innsbruck, perhaps two weeks in from Miles's accident, when his friends Matt and Ollie had come out from London to see him. During their visit to the hospital a nurse told them how Miles clearly hated having his teeth cleaned and would bite the brush so hard she wasn't able to continue. He would clamp his teeth on it and not let go and she worried he might snap the brush. Matt and Ollie thought it was a perfect example of his force of character and general impatience with things that got in his way, and we all agreed and laughed with pleasure at the idea of it. How typical, we said, just the sort of thing he would do when he's irritated. We loved him even more for that show of obstinacy and irascibility, but we also thought it was exciting news, that it showed how close he was to the surface and very soon we would be able to tease him about it.

And so I discover the truth about Miles's apparent show of irritation and independence. I learn about the notorious bite reflex, so feared by speech therapists, that appears in adults with severe neurological impairment. It occurs in association with what is described as ‘marked sensory disturbance' – what does that mean exactly? How will I ever know? But far from showing he was close to coming out of his coma it was an indication of the severity of brain damage Miles had sustained. He couldn't help it – it is an involuntary response, and so powerful in some cases, I read, that the power of the bite is said to be equal to
90
kilograms of pressure.

The good thing is that his bite reflex is diminishing. His swallow has improved too, although he still cannot manage liquids, let alone solids, safely without choking. But he still has a trachie, the hated plastic protuberance that has come to embody TBI for me, its ugly, demeaning marker. I want it removed; that was the aim of the speech therapists at Queen Square, but here at Putney their approach is more conservative. In fact I do not think it is ambitious enough and say so. There are arguments. Your mother is very confrontational, the junior speech therapist says to Marina. We all agree with her, says Marina furiously and returns home to tell me.

Apart from the discomfort for Miles, if there is any chance he is going to speak again a trachie could inhibit his initiating speech. Erica, the lovely sister in charge of this ward, thinks Miles is ready to have his trachie removed too, and she takes the responsibility upon herself, asking the ward doctor's permission. She removes it, despite the speech therapist's advice, a brave thing to do but entirely in keeping with the sureness and compassion of her nursing skill. She is a beacon in this ward, her calm confidence and her beauty. Miles visibly relaxes in her presence, turns towards her when he hears her voice. I could love her for her ambition for Miles.

I am concerned about the quantity of drugs Miles is prescribed. His daily drug list reads like a junkie's dream cocktail – I am told by a friend who visits Miles that a number of the drugs he is prescribed demand huge prices on the experimental black market. Baclofen, Dantrolene, Tizanidine, Gabapentin, Atenolol, Modafinil – how can his weakened body tolerate such a bombardment? Baclofen, Dantrolene and Tizanidine are given to combat spasticity, Gabapentin provides neurological pain relief, Atenolol is a beta blocker and Modafinil a stimulant. When I look them up the individual known side-effects can include nausea, dizziness, double vision, headaches, numbness, tingling in the limbs, cold hands and feet, liver damage, depression, even, should he be capable of them, suicidal thoughts. Apart from the stimulant Modafinil they all cause increased drowsiness. Surely any moments of awareness Miles has must be seriously compromised?

I make an appointment to see Dr Jackson, the ward doctor. Unlike the doctors at Innsbruck and Queen Square, he appears to keep himself intentionally aloof from relatives. When I enter his office he looks up from his desk with undisguised irritation. How can I help you? he asks, screwing the lid carefully back on to his fountain pen. After I have told him of my concern he shifts in his chair and sighs resignedly. In my opinion, he says, it really is not a good thing for relatives to try to inform themselves about medical matters. It's much better all round if they just leave it for the doctors to get on with. I can feel my anger rising. Dr Jackson, that is the most patronising thing anyone has said to me. If I don't understand something I will always try to find out about it. In this case we are talking about my son's life and as he is unable to speak for himself, I am his spokesman. Surely you understand it is my duty, my responsibility, to try to understand his situation? I'm not telling you how to treat him, I am just telling you that, given the crucial need to encourage his awareness, I am concerned about the quantity of drugs he is being prescribed.

I do understand how irritating it must be for doctors when relatives question their expertise, but there is too much at stake for me here. Dr Jackson is clearly not used to being questioned and his surprise at such impertinence is plain. Miles's situation is complex, he says coldly. His needs are complex. That is what I am treating. But suddenly the coldness subsides. You know . . . He stops for a moment, then he continues: I have two daughters, the oldest one just a few years younger than Miles. They are also very gifted academically. He goes on to tell me about these daughters, how hard working and grounded they are compared with so many of the youth today, how proud he is of them. He doesn't say it, but I think he is telling me he understands, he is a parent too. How difficult must his job be, every day to be treating such damaged people and having to confront their desperate and confused relatives; perhaps keeping aloof is the only way he can maintain his equilibrium.

A few days later Erica tells me that a decision has been taken to try to reduce Miles's medication. It will be a slow process, one drug being reduced at a time so the effect can be monitored. Gradually Miles comes off Tizanidine, Dantrolene, Atenolol; there are no adverse effects and his spasticity does not change. As soon as they begin reducing Baclofen it deteriorates and similarly with the reduction of Gabapentin; Miles will always require both these drugs. But at least they have been proved to be necessary and I am grateful to Dr Jackson.

Miles and drugs: how ironic that I am more concerned about his drug intake now than I was when he was experimenting with them himself. At fifteen he was a full-blooded teenager, roiling with hormones, his hobbies no longer simple boyish ones but skateboarding in derelict urban places, going to raves, breaking whatever rules he found it fun to break and, crucially, those he thought constrained without necessity. Like so many adolescent boys before and after him, he read
The Doors of Perception
,
On the Road
,
The Naked Lunch
, Ferlinghetti, Ginsberg.

A Saturday night at his boarding school, long after all the boys should have been signed back into their houses. Miles and Rick are still out in the town, exuberant with whatever it is they managed to get hold of, regaling each other with the amazing insights they are now privy to. Suddenly Miles stops in his tracks. Hey, Rick, come and look at this, he calls to his friend, you've got to come and look at this. It's awesome. There's a bush here that looks exactly like Miss Nash. He leans forward with great deliberation to inspect the bush and then starts to prod it tentatively. Whoa, Rick, you've got to come, he says as he continues prodding, this is definitely weird. Rick joins him and now both boys are peering in amazement and delight at the strange apparition they see before them. They reach out to touch the bush, and then, very clearly and very slowly, it begins to speak back to them.

It IS Miss Nash
, it says. They have been standing in the middle of the street at
3
am prodding their French teacher in the face. She escorts them back to their boarding house where, he tells me later as an adult, he spent three of the most nightmarish hours of his life so far left to sober up in the neon-lit wash room.

The repercussions were fittingly dire, meted out by the school authorities and also by David and me.

One day Gemma appears at the doorway to Miles's room. Her own room is just along the corridor and the door is always closed, a large unmissable sign on it that says in thick black print: THIS IS GEMMA'S ROOM. DO NOT ENTER WITHOUT GEMMA'S PERMISSION. I have seen her sometimes in the distance, being pushed along in her chair by a carer, and she looks as regal as a princess enduring a royal visit. One of the nurses tells me that calm and sweet as she looks she is a demanding patient, that she dismissed Dr Jackson, her appointed doctor, because she does not like him and requested another whom she preferred. What a girl, I think.

She has come today to introduce herself to Miles. She asked the carer, Donna, a motherly Filipina, to bring her, Donna who has left her own children behind in the Philippines to support them from afar and who treats all the young patients as her surrogate family. I've come to visit Miles, says Gemma to me simply, in a voice so quiet it's almost a whisper. I've seen him a few times since he arrived and I wanted to say hello. Donna has placed the chair in the doorway so that she is facing Miles, who is seated in his chair by the bed and looking the other way. Hello Miles, she says, I'm Gemma. He doesn't respond. She is a formidable girl, sitting there, her manner at once imperious and sweet, a combination, I think as I look at her, of the lack of movement, the lack of anything extraneous about her except the words she is uttering, and the shock of her extraordinary beauty.

For close up she is beautiful. Partly because of her luminous eyes and perfect creamy skin, partly because her moon-pale body is strangely motionless as she looks back at you. She sits so erect in her chair, her arms on the arm rests, nails perfectly manicured with the lightest sheen of pearlised pink. Everything about her is carefully executed: the understated make-up, just the lightest touch of eye shadow and lipstick; her dark hair cut to frame her pale face; the perfectly co-ordinated blouse and long skirt; and her earrings, dangly and sparkling, even in the daytime.

Surprisingly for someone so beautiful she has the sweetest smile. There is a transparency about it, as though you can see through to something quiveringly alive, and you think perhaps that is why she seems as fragile as a butterfly trapped under glass. But her smile is the only point of expression in her face, and only when you realise that do you take in that she is breathing by means of a corrugated, white plastic tube that leads from the tracheostomy in her throat and winds down behind her into a box at the back of her chair. The box is her portable ventilator and she can only speak on the out breath; talking to her is a slow and difficult process for both of you.

Three years ago, aged twenty and at home one evening with her boyfriend, she collapsed with no warning and was rushed to hospital. When she came round she was paralysed from the neck down and on a ventilator. It was discovered that, as the result of a freak condition, part of her spinal cord had from childhood not been growing in tandem with the rest of her body and had finally snapped. There was nothing the doctors or medical technology could do; her paralysis would be permanent. After spending the first two months in her local hospital she was moved to Putney and has been here ever since. Her boyfriend broke off the relationship; he was young and could not bring himself to see her after that traumatic evening.

Following her first visit she comes to see Miles regularly and unannounced, despite her fierce approach to her own privacy. She brings him gifts, CDs of her favourite music, DVDs of films she thinks he might like, books to be read to him. She asks me if she can have a photograph of him to put up in her room and chooses the one in which, she says, he looks like a film star. Donna tells me Gemma has fallen in love with Miles.

The children and I find it difficult; we want to concentrate on Miles when we are with him and instead we must talk to Gemma, in itself an arduous process as she waits for the breath to speak, her voice so faint we must strain to hear. There is the added poignancy of her unrequited feelings for Miles, for he always looks uncomfortable when she is there as though this is an intrusion for him too.