On a day when my son is in Singapore with his fiancée and her family, where they have recently held the traditional tea ceremony for their upcoming marriage, I could not help going back through my diaries and letters to see how far exactly four years have changed everything. In a letter from the same date in 2009 I found a record of where we were then. Such a cold, clinical letter, reading it back. A mere telling of facts, in a manner that attempts to hide, even from me perhaps, the screaming fear and the grief in my heart at the time, as I sent updates to those wonderful souls around the world that had held us in their hearts and prayers. We did not know the full extent of the damage. Or the fear. Or the hope. We knew, however, that it was going to be a very long journey. Maybe one without a happy ending. Which just goes to show you can never take anything for granted.

I thought about sharing it, then thought no. We have come so far since then… why drag it back up? But I spoke to my son yesterday… he called me to share a wonderful bit of progress he had made… As usual, to anyone who hasn’t taken this journey it would sound so minor that if I shared it with you it would almost sound irrelevant… yet to stand, unsupported at all is, in itself, an incredible achievement… let alone on his right foot…

As we talked, Nick and I detailed more of his progress, and spoke of how unbelievable is the journey he has taken, in more ways than one. I told him I had been reading back and he asked me to send him that letter. It dates from a time when even his levels of consciousness were uncertain. After reading it…in itself a major triumph… he wrote, “I’d almost forgotten about that struggle and uncertainty! How am I now in Singapore?… You should write that for the blog. Puts things in perspective.”
And he has a point. It is, in the struggle to keep moving forward, very easy to lose sight of where you have been. When you stand, already weary, looking up at yet another mountain to climb and despairing of ever reaching a place where you can just rest awhile, sometimes all you can think of is how hard the journey has been so far, and sometimes it is worth glancing back.

Dwelling in the past is not healthy. But turning back momentarily to see the route you have taken, what you have already overcome…the mountains climbed, the rivers forded, the dragons subdued…can remind you of just how much you are capable of achieving… and encourage you to tackle that next slope, step by step. It is just a shift in perspective.

So, for my son, I would ask you to walk with us a little while….remembering that four years ago even hope seemed hopeless… yet we did it anyway… and today, my son and his fiancée are in Asia, while I count the days to their return and their wedding, and the beginning of a new chapter.

Nothing is impossible.

The Professor has accepted Nick, subject to funding, for an excellent rehab centre… though there will be a couple of months wait before there is a place. The Professor assessed Nick on the 27th July, before leaving for a break, and had a fairly minimal response.

Things have changed somewhat since then.

Nick has been moved to a ward. He is now off all drugs except paracetamol, and retains only the nasal feeding tube and a couple of others. He no longer requires oxygen and can cough and breathe unaided. His swallow is still not strong, so occasional help is needed clearing the secretions. And they will still not allow him to drink. However, he is allowed to use a small sponge to wet his mouth.. and he can do this unaided as long as someone is there to hold the water.

He has recovered good and quite accurate voluntary movement in the left side. He can with great delicacy remove irritations (such as nasal tubes), scratch an itch or indicate a problem.

After I had spent some time explaining his situation to him and massaging his limbs, he managed to raise the right leg off the bed by about four inches… and repeated it on demand several times! By evening, he had that more or less under control and had started on the right arm. He managed to get it moving briefly, though only a twitch in the hand and movement from the shoulder.

He can, and does, roll over on demand and hold himself with the left hand on the bed bars for washing. He can shuffle down the bed… and since yesterday, readjust his position and help move himself back up the bed without the slide sheet.

He has regained some of the control over his face, getting his mouth to close at will and beginning to try and speak. There are words, strings of them, but so quiet I could not catch them. He follows conversation with his eyes, and crucially, with his mind.

Nick responds not only to commands now, but also to conversation. He manages very well to nod and shake his head, making perfect sense, about things directly affecting his body. He has questioned (with judicious interpretation of head, eye, and hand movements) his environment, monitors and the wholeness of his body. He recognises friends and relatives, cries when I and his brother arrive, but now understands that visiting hours restrict our stay and that we have to leave. He has been out of bed in a chair on a couple of occasions too. His eyes are still too wide, but clear and aware. He interacts well with visitors.

My son’s mind is definitely ALL in there at a level we could not have hoped, and is fighting back. The connection between body and brain, however, is still appallingly fragile, and he is very scared, frustrated and desperate to move. It is the most heartbreaking thing in the world to see him imprisoned in his own body. Yet, he retains himself and there are even flashes of humour and the odd smile.

He dislikes the feeding tube and ‘informed’ us, in response to questions, that he is hungry and wants a beer…. Indicating he can hold it himself, thank you! He is fighting back with that stubbornness I told you about, and, it seems, winning another small battle each day.

I have faith in my son’s determination to beat the odds… the word ‘impossible’ has always spurred him on to greater effort.

My major concern at present is the lack of correct information that is being passed around with the lack of continuity in his care. His nurses had no knowledge of either the circumstances of the events which caused this, no medical history at all, even the past few weeks, and no idea of what he can and cannot do for himself at present. They did not even have an emergency contact number for me. This incorrect or incomplete information seems also to have been passed to the Professor, although I will rectify this when I meet him.

I have had no meetings with the team looking after him, in spite of requests, apart from questioning a doctor who was doing routine checks one day, and the feeling of the family who have visited Nick is that they are simply ‘babysitting’ until Nick can be moved to the next bed elsewhere.

We have been told that rehab doesn’t matter… it isn’t important if it doesn’t start for months. I feel this is the wrong attitude, as I’m very sure it is important to Nick who is fighting very hard to get himself back. I, with my minimal knowledge and a bit of common sense, am working on instinct  here of course. But I know my son better than the staff here, and can see how hard he is trying. I understand that structured rehab will have to wait, but he wants to get on with it and there is nothing in place for him. I am getting to be a very demanding parent…For goodness sake.. he even asked for a pen last night to write what he wants to say.. though he has only a shaky left hand and could not do it ( we do not even know yet if he CAN write.. if the language centres will prevent his brain from using language in that way.. he may be severely dyslexic). The illegible scrawl we followed closely as he wrote… and though we could not read what he put on the paper, the shapes of the letters he appeared to be trying to put there spelled ‘love you’. I thought this was imagination… but the two others with us at the time also thought that, and when asked, Nick nodded. Which crucified me.

He has indicated that he has a problem with his left ear and right eye. I have wondered about tinnitus and know the eye muscles are also affected, so his focus is out on the right. We can’t know how much.

We are very aware of the possible long term effects and damage we may yet have to deal with ( I’ve done a lot of research lately and picked the brains of a good many survivors, their families, and whatever healthcare professionals I can)  and also, that we are at the start of a very long road. However, the stubborn little sod seems to be refusing to be beaten, and I would like to support him as much as possible in that fight. I just cannot yet seem to get ANY support in this from the hospital.. and the next person who says ‘funding’ to me is likely to get a mouthful.

I have demanded a meeting this week with his healthcare team.. not that he seems to have one..and unless I get some reasonable responses, I envisage headlines in the press… ‘The miracle the NHS screwed up..’

Please continue praying for Nick… he is so desperately trying and his mind seems quite clear… he is suffering badly.

August 2009