Saturday, 14 June 2008

Recovering Tom's Insanity

I've tried to avoid this becoming TomBlog, but the result of this endeavour is that I don't post anything at all. Having received an e-mail from Neil and Cheryl in Australia this morning I realised two important facts:
  1. That the Internet makes it possible for us to have friends we've never met.
  2. That a lot of people genuinely want to know how the boy's coming along.
So with this in mind I ask their indulgence in allowing me to share some of what I've told them.

LONG POST WARNING: This is going to take ages
Looking back I see we're six months behind on news. So here's the lightning "previously on this programme" update.

Following the re-location of the cerebellum, Tom made good and rapid progress. His responses became coherent and it was possible to get real yes/no answers from his nods and shakes. His temperature was all over the place, so the nursing staff equipped him with a fan and huge red push switch that he could use to switch it on and off. He couldn't operate it well, but it was a small step towards controlling his environment.

An alphabet board was provided, but not successful. Tom's eyes were badly unsynchronised, so he couldn't really see it, and his left hand movements were so spastic that he couldn't point at a letter. If we read out the letters his thought processes were too slow to alert us when we reached the right one. If we slowed down, he became frustrated. On one occasion Tom made it clear that he needed urgently to tell us something. Yes, he'd try the alphabet board. He spelt out "Remove", the first complete word we'd seen. Our excitement steadily increased as we saw the appearance of the first constructed communication in two months.

"Remove wall pin."

We look at each other uncomfortably. "You spelt out 'Remove wall pin', is that what you meant to say, Tom?" Tom nods fervently. Extended questioning brings no enlightenmment. We're faced with the conclusion we dreaded: something's seriously disconnected, and communication is gibberish.

It was about this time we were summoned to meet Dr Soryal (apologies for approximate spelling), the head of rehabilitation. He's a lovely, warm-hearted man, who tells us gently that the prognosis is fairly poor. There's no voluntary control of the right hand side of Tom's body, and it's unlikely that there ever will be. "But you must understand," he explains patiently, "that this young man still has a quality of life ahead. The important thing now is to get him into specialised rehabilitation, where we can make him the absolute best he can be."

Inevitably, we were shattered. We'd held to the belief that Tom would somehow bounce back to perfect ability. To contemplate that this helpless shell might be all the future held was unsupportable. "You must also understand," insisted the doctor, "that Tom could astonish us all. We're not planning for anything but full recovery, however unlikely that might be. You should be prepared for serious disability, but be ready for the miracle."

We vowed to be ready.

February: Haywood Hospital
Tom was transferred to the rehab unit at Haywood Hospital in early February. By now he'd begun making small movements with right hand and foot. We were seeing signs that he might confound the experts. All of us expected great things now he was in specialist hands.

They didn't happen.

Within a few days it became obvious that Tom was deteriorating rapidly. His responses became erratic, and finally ceased altogether. All of that wonderful progress was evaporating; we were losing him.

An MRI scan revealed that intra-cranial pressure was building rapidly and dangerously. An urgent transfer to North Staff Hospital allowed an emergency operation to install a permanent shunt. It was hoped that this would restore Tom to his previous recovery path, but there was the possibility that further brain damage could have occurred.

Recovery over the next couple of weeks was slow but unmistakeable. He was recapturing lost ground. Then he started moving his right arm and leg. They were weak, but he could move them.

The miracle was beginning.

March: Proposals on the Communication Super-Footpath
As Tom became stronger and more confident he started to ask for the alphabet board again. Dreading the reappearance of the wall pin puzzle, we complied. It worked! Sentences flowed, if not like spring water, at least like lumpy custard. Tom would insist on spelling out "yes" and "no", rather than using his accustomed nods. His pointing accuracy was roughly equivalent to you or me attaching a laser pointer to the end of a fourteen-foot fishing rod, and using the red spot to play "Where's Wally?" using the book at the other end of the football stadium. He'd spell out "ye..." and completely ignore our increasingly desperate prompts. "Yes! Yes! YES! FOR GOD's SAKE YES!" we'd scream as he doggedly consumed another two minutes trying to locate the "S".

One evening we left Tom with his partner Laura for a few moments alone in the conservatory. When we returned, both were grinning broadly. Via the alphabet, he gave us the news.

"I've just asked Laura to marry me."

Later I spoke privately to Laura. Had she accepted because she felt trapped? I assured her we'd understand if that were the case. "It's what I've wanted for ages," she told me, "Typical it takes a bloody brain tumour to get him to say it, but no, it's what I want to do." Throughout this whole ordeal she's remained constant and balanced. What can I say? She's astonishing.

Late March: And the first words are...
So far, Tom had made no real attempt to speak. He'd whispered "Four" once, while correcting me on a rugby score, and he'd very occasionally hiss "fan" if he couldn't operate the switch for his fan, but no sign of real words or sentences.

The dam burst in a way that's quintessentially Tom.

Eva offered me a mint. Tom had by now progressed to sipping thickened liquids, but certainly couldn't cope with Softmints. He constructed a forlorn expression and reached for the packet. "Oh, I'm sorry," said Eva, "That was really insensitive, I'll put them away."

Daniel, Tom's eldest brother, couldn't resist the moment. "Ooh, I really fancy a cool refreshing mint, Mom, can I have one please?"

Tom started to chuckle silently. Laughs at this point consisted of rhythmic expulsions of air, with no vocal sound whatsoever. Daniel started to laugh and continued to taunt his youngest brother. "Oh no, want a mint do you? Wish you could have one? Bet you wish you could tell me what you really think.." and so on.

Tom's laughs started to gain momentum. We all moved seamlessly into hysteria as Daniel stood up and began accompanying his taunts with antic gestures. Suddenly we all stopped and listened. The laughs had begun to be audible. We could hear vocal chords kicking in. Finally the pressure blew a safety valve somewhere and Tom finally found his voice.

"F-f-fuck off!"

Sue, one of Tom's favourite staff nurses came into the conservatory to see what the whoops, laughs and, yes, tears were all about. We explained that we'd just heard Tom's first words, and broadly outlined what he'd said. She put her arm around her patient and said "You wouldn't say that to me, would you, Tom?"

He turned and smiled sweetly up at her. "Fuck off, Sue".

April: Depression and Frustration
We'd been warned that Tom's now meteoric recovery would slow. That's inevitable when you consider that early progress might be that he could move his hand an inch further than he could yesterday. He became deeply depressed, and would frequently become stuck in illogical converstional loops. He became obsessed with his face. It was enclosed in some sort of huge square box. He'd insist that he could come home now, there was no reason for his being kept in this hideous prison. The nurses were cruel; they enjoyed making him miserable; they loved to humiliate him.

None of this, of course, was true. We were seeing the inevitable depression and confusion brought on by serious brain injury.

The hospital assigned Tom a clinical psychologist named Michael. He has the empathy and human understanding of a pork pie. Michael reported that his patient “seemed absolutely fine”. When challenged on this, he came out with a stunningly insightful comment: “Well, I asked Tom if he felt OK and he said yes”. We explained that, though we fully respected his years of training and experience, life had led us to the belief that people don’t always tell the truth about their feelings. He seemed quite surprised by this information.

A change of medication is prescribed and an immediate up-turn in Tom's mood results.

Although occasionally confused, Tom was clearly cognitively intact. Yet Michael kept saying that “Tom seems to understand most of what’s said to him”, as though the lad were seriously impaired. On watching Tom’s behaviour as a detached observer I suddenly saw the reason for this misapprehension. Tom will suddenly point at someone at random, grunt “Nobhead” and dissolve into helpless giggles. Or he’ll break off from a serious conversation because he’s seen a pigeon land on the bird table. “Fat pigeon!” he explodes, and roars with laughter until he chokes. Michael looks on and shakes his head, mourning for the devastation of an intelligent young mind. We roll helplessly around, in similar straits to Tom, knowing that we’re seeing the re-emergence of the glorious madness that imbues all of us Shaws. Making Michael understand this would be like explaining Wittgenstein to a dog whelk. So we don’t.

May: A Sense of Humour in Freefall
We Shaws have an absurd appreciation of humour. It's difficult for balanced humans to understand us because we don't really have that good a grip on reality. We try to focus on higher things, but for us Man is the creature that laughs. So we laugh. A lot. At everything.

Tom's appalling sense of humour hasn't improved as a result of the crisis. As a result, he's funnier than ever. This is somewhat akin to Robert De Niro becoming a better actor. It may be fuelled by one of the symptoms that Tom suffered during the months leading up to his operation: he couldn’t laugh without searing pains in his head. Now that he can guffaw without restraint he takes every opportunity to do so, and it’s the rest of us that suffer the pain. Every visit at some point sees us all clutching sides, jaws or backs-of-heads, complaining of agony while we cough, splutter and weep in unsustainable levels of gigglage.

June: Where are we now?
Six months on from the worst night of my life we're watching the miracle so many people prayed for. A couple of nights ago I watched Tom sitting normally in his wheelchair, holding his guitar. His left hand confidently shaped some simple chords, while his right hand - the one that would never have voluntary movement - made its first halting attempts to finger-pick. He saw me looking at him and turned his ludicrous beaming grin in my direction.

He still has little feeling in his right leg, but it's strong enough to support him. The physios are confident that, in time, he'll walk again.

Later this month he and Laura are going to see the Zutons in concert.

Home is still probably some months away, though visits are likely within the next few weeks. These will become overnight stays as Tom's ability and independence increase. He chatters non-stop in a voice that daily becomes more like his own. We've begun taking a laptop into the hospital and one of the best Web developers I've ever seen is beginning to re-discover his skills.

I've just been reading Richard Hammond's book. His wife Mindy writes honestly and clearly about an experience that parallels our own with uncomfortable accuracy. Her strength brought the Hamster back, and I'm sure has given similar strength to thousands of others who've had to contend with the unimaginable devastation of brain injury.

I'd like to add my own humble contribution to what she and Richard have written. From the viewpoint of last November, the future was beyond contemplation. The reversals and bereavements seemed more than any of us could accommodate. If this is where you are now, only those who've experienced it understand the sheer agony you're experiencing.

But there is always a future. As Tom once again drops in a well-judged but completely left-field remark; as we once again fold into helpless paroxysms, leaking fluids from every facial orifice, I begin to glimpse what really makes us human. He's come further than any prognosis could foresee through sheer bloody-minded indomitability. We're hoping he'll come all the way to full ability.

But whatever the final destination, he's already achieved greatness.