Yesterday I drove my son to Cambridge. It is a two hour drive from here, a long way, you might think, to go for a physio appointment. But this was something a bit different.
Nick was stabbed through the brain in a random attack in 2009, leaving him for dead in an alley. Weeks of coma led to an awakening to a changed world. His brain had reacted as if to a high velocity wound, such was the ferocity of the attack; his brain swelled and bled… damage continued long after the initial blow, in spite of heroic efforts from the staff at the Wessex. He was expected to die, but he chose not to.
Waking, however, it soon became apparent that in spite of all the physical mountains he would have to tackle, mountains that would make an ascent of Everest look puny in comparison, he remained himself…stubborn, determined and focussed. He was initially paralysed down the whole of his right side, had lost coordination on the left, was unable to speak and his sight permanently damaged. And that is the short list. He was just 25. By the time he left hospital six months later he had astonished the medics and papers were being written. Yet from his perspective progress was painfully slow.
We take so much for granted.
We were talking on the way to the appointment yesterday. So many things fade into memory and are all but forgotten until something calls them up. Things like the determination to be able to sit up unsupported… that saw Nick seated on a perching stool for an hour and a half at a time while he tried to watch a film… trying to balance… not always successfully… while pouring sweat with the effort. Things like the ice cream tubs and luggage straps that kept his feet on the footplates of the cross-trainer while I held him and the machine upright… fighting for a lost fitness and hoping to re-pattern nerves and muscles, reminding them what motion should be through the mechanical repetition of movement. Things like the harness I made… like the reins sometimes used for small children… to keep him safe as he attempted to stand and walk… or the Dr Seuss books, large print tongue twisters read aloud until speech was intelligible again. You ‘forget’. Maybe you don’t really want to remember.
Some things, however, you cannot forget… like the discharge letter from his physiotherapist three years ago, copied to Nick, where, without warning, his goal of walking was called ‘unrealistic’… a word now used as a spur when the going gets tough.
The official help through the health service with that dream has been minimal the past three years; any therapy he has had to find and fund himself. Most of his progress has been bought with sheer effort and bloody-mindedness on his part and a rigorous workout routine. We have learned about brains and the nervous system, kept abreast of medical and technological advances as best we can and learned what we could in order to make ‘unrealistic’ possible.
Which is why we went to Cambridgeshire.
Prime Physio in Melbourn have a reputation for excellence… and from the moment Andrew got hold of Nick yesterday it was apparent why. It is a very different ethos from the NHS, bound as it is with rules, regulations, lack of funding and too much form filling. You can see why many physiotherapists find the system frustrating as it hampers their time and ability to help their patients. Andrew made Nick work. I watched as my son and he fenced verbally with laughter while the effort required made Nick sweat… which delighted him. Having learned to be sceptical I watched, too, in delight as the team picked up on the almost invisible weaknesses and targeted them specifically. And I watched the fire and sparkle come back into my son’s eyes after a disastrous and heartbreaking start to his year.
Physio is a long process. Muscles and nerves do not learn and change overnight. Balance cannot be restored with a magic wand. As I sat and watched I remembered uncurling twisted fingers, massaging feet and limbs, stimulating nerves as best I could through touch, even when he was deep in the coma, even when there was no real hope, because there is always hope if you allow it. I heard Andrew explain that this was something now happening with electro-stimulation for coma patients and remembered the electric ‘slimming’ belts we had adapted to stimulate muscles and movement on arms and legs every day. I saw Andrew test the movements of Nick’s fingers with an exercise I had made him practice in rehab, touching his thumb to his fingertips in an effort to regain coordination and precision. For the first time I realised that maybe the common sense which was all we’d had to work with hadn’t been so bad.
As they worked I watched Nick take control of his posture again, becoming aware of the weaknesses and compensation, and I saw him sit straight. I saw him stand tall. I saw a difference and a renewed hope of progress.
Meanwhile I was talking to Sarah as she almost unconsciously told me of the level of care they have for their clients, the extra effort outside the gym they have put into making this place possible and workable for those who travel here.
Then I watched, trying unsuccessfully to choke back tears, as they strapped Nick into the Ekso Bionics exo-skeleton and saw him walk.
You may think it silly… the Ekso does the work initially, after all. That’s the idea. It allows those who cannot walk… who may never walk… to exercise in a way they should not be able to do. But for those for whom there is a chance… even an unrealistic one… of recovery, it is a way of reminding the body what it should be doing. It reminds the nerves and muscles how to coordinate, it compensates for lack of balance, it allows the body… through correct alignment… to stand tall and straight. It can retrain gait patterns, rebuild neural pathways through repetition…. There are so many possibilities with it.
It is an extremely expensive piece of equipment… not something you could buy to be able to use every day. It will inevitably help, but it is not a quick fix or a magic wand.
I knew that.
But it is impossible to contain hope with logic and all the common sense goes out of the window when you watch your son walking, tall again, not hunched, not leaning… just tall and straight again, towering over you, for the first time in five years, tiredly reminding you why he calls you the hobbit.
And I watched him walk for half an hour… 362 steps.
Hobbit and son