Wet, wet, wet

You might have sat comfortably during the 2012 Olympics and gazed at the pictures on your telly of the Zaha Hadid-designed London Aquatics Centre and wondered whether it was as impressive in real life as it was as seen through the  lens of a TV camera. Let me answer that question. Yes. Yes. Yes.

And it’s not just a stunner on the outside. Despite the modifications that took place before its 2014 opening to the public, the huge interior is a dream just to walk around, even before your nose catches a whiff of chlorine. The views of the 50m tournament race pool and 25m diving pool recall instantly memories of the moments that took your breath away during those glory days in the summer of 2012 (was this when Michael Phelps officially became ‘the greatest swimmer that ever lived?). The overall effect is somehow magic, and even the signs to the changing rooms start to look full of grace, visual harmony and touched by the hand of triumph.

Now, here we were, a willing contingent from Headway East London, itching to see if getting wet could do anything for brain injury.

My own post-injury experience in the shallow end is meaningful - to me at least. Shortly after discharge from hospital following a hemorrhagic stroke, I was assigned to a therapy team from London's Homerton hospital. A physio and OT visited me at home and devised various exercises and routines that might aid my recovery. On one such visit we went for a swim in my local pool. The OT was at first concerned how I would manage getting in and out of the pool. Her worry was short-lived as I pre-empted any practical what-have-you by simply throwing myself in. 

Hitting the water and being bathed instantly in its warm, forgiving embrace was a moment of sensuality words cannot do justice to. Four months of deprivation in a hospital bed might well be the psychologist's explanation, but ‘bliss’ is as close as I can get to describe the sublime feeling.

I'd like to say that in that single moment swimming became an essential post-stroke exercise for me. That would be a lie. But what I did find on our group visit to the Aquatics Centre, in between some infantile splashing of my fellow Headway members, was a new way to use a swimming pool. Some of the yoga and tai-chi routines that Headway Therapy Team offers regularly to its members are given a whole new dimension when tried in a pool. The soft resistance of the water slows the movements and provides weight support for those with balance problems. Falling over in a swimming pool is no biggie. It's fun, actually.

So, expect to see me in swimming pools more often from now on. The legacy of London 2012 is alive and kicking, despite all those doomy predictions. It was shortly after attending events at the Games that the stroke hit, leaving me for dead. I can’t be sure, but I like think that the courage, determination and sheer strength of will I saw in the athletes helped things turn out differently for me, so if anyone ever tells you those Games were a waste of money, tie a brick to their foot and throw them in the deep end.

Net gains

Symposium isn’t a word that trips off the tongue. It sounds impossibly proper, serious and really quite grand. When asked by Bridges Self Management to help out at their 7th Annual Symposium at St George's hospital in London I felt out of my depth just reading the email. In an attempt to at least look like I was somehow in the loop, I looked up ‘symposium’ in the dictionary. It is a compound word that dates back to ancient Greece and translates roughly as a ‘drinking party’. A symposium was a bunch of mates getting together for the sole purpose of getting drunk and talking endlessly. That’s more like it. What could possibly go wrong?

What went wrong is that I forgot to mention several key points. Drink had nothing to do with it, and neither was the panic that struck when I arrived in the designated conference room in St George’s at the sight of three, yes THREE screens from which our presentation was to be projected. The main purpose of my involvement was to supply a repeat performance from a 2015 conference in which physiotherapist and Bridges trainer Katie Campion interviews me about how I coped after discharge from hospital following a heamorrhagic stroke. We talk about goal setting and I seize the opportunity to make plentiful reference to football and the team I support, Liverpool.

In outward appearance, our presentation resembles the work of a second-rate comedy duo. We feed each other lines, but they are not always the right ones. I’m always aware of undermining Katie’s proper professional status with my bad jokes, and sometimes the result is confusion. So, in the part where we talk about my understanding of the word 'goal’, I had intended to shoot a line about the importance in football of coaches and captains. I missed the shot. And in the part where I answered questions about devising small steps to big goals, I should have mentioned the importance of visualisation. Again, I fluffed it and the chance went begging.

It wasn't all bad, though. Katie did manage to grab victory from the jaws of defeat while we were on the topic of my early goals when still in hospital. In this section I typically talk about the desire to complete bathroom activities independently. I then move on to describing my attempts at the 'transfer’. This will be familiar to stroke nurses worldwide and involves getting a patient to move themselves safely from wheelchair to bed, and vice versa. At the time I was desperate to master this manoeuvre because being able to snoop around and then return to bed for a snooze was, for me, the very essence of being alive.

Maybe I was a bit too desperate because my early attempts involved hurling myself from a sitting position on the bed in the general direction of the wheelchair seat. The reverse process was not much prettier and, as I outlined this technique to the rapt symposium audience, Katie quite sensibly interjected, “Wasn’t all that hurling a bit risky?” This remark opened a can of worms on the subject of risk, and to what extent patients should be entitled, encouraged even, to explore the everyday fringes of jeopardy. It is a big, important subject, and relevant not only for stroke patients but for anyone living with a long-term condition. Is not the freedom to make mistakes a universal human entitlement? Discuss. Needless to say, we barely scratched the surfaces of it, but I am glad the subject of risk had put in an appearance as Katie and I tumbled our way innocently towards some kind of conclusion to our presentation.

So, as I sat down afterwards, the word PHEW shot to mind. I had barely paid any attention to the symposium’s previous speakers. All I can remember is that two experts from Lewisham CCG, Damian and Angelika, proposed what seemed to me a perfectly valid practical distinction between self-care and self-management, illustrated using a projected Venn-style diagram that looked like a hard-boiled egg. I was pleased to note that the yolk was not centred but irritatingly offset, just like mine are when I make boiled eggs. Another pair, Heide and Tino, ran a video of a lovely chatty couple who were calling for a bit more joined-up thinking from practitioners and clinicians in regard to service users.

Lisa Kidd, a leading goal-scorer for nursing and Scotland, followed our presentation, and made some telling points about how things actually happen on the ward. I am often guilty of gushing praise at the doctors, nurses and therapists who have all contributed to my stroke recovery, to which they most commonly reply, “Thank you, but I was just doing my job”. My response is always the same: “I know, but you choose the way you do your job, so please accept my thanks for that.” I was extremely grateful in this respect to be able to forge good communication with all those involved in my progress after stroke. It is an experience and a lesson I hope I will never forget.

Bridge the Gap

On four successive Mondays in April I helped on a research project into whether the step process method in stroke rehabilitation as advocated by Bridges Self-Management can be made to work in a group setting. The more interesting details of the study, by UCL's Ella Clark, will I’m sure appear in more scholarly quarters, but what I can report is that about half way through the trial, which brought together seven stroke survivors, Lucinda Brimicombe, Bridges Director of Training and Innovation, raised the question as to what was uniquely "Bridges" about this project? How was it different from other stroke rehab groups? In what ways and to what extent were Bridges methods working successfully? It was at this point that images of bridges started to pop into my head. 

Runcorn Bridge

I have come to know several bridges, starting with my earliest memories as a child in the back seat of a car crossing the Runcorn Bridge over the River Mersey. It seemed so big with its hard iron frame studded with rivets the size of your fist. It was scary. And more recently I enjoyed the Scandinavian TV crime series The Bridge, which features the Øresund Bridge that connects Sweden and Denmark. It is 16km long, and it is scary. The drama begins with the discovery of a body exactly half way along the bridge. Is this in Sweden or Denmark? Which police force will investigate the crime? The Swedes? The Danes? The story is later complicated when the body is found to have been cut into two equal parts. Scary.

Øresund Bridge

Travelling the Øresund Bridge via Google Earth is an eye-opener. It seems to go on forever, and you can easily get lost in thought along the way. You begin to run your imagination over the symbolism of the bridge as a connector, how a structure can unite two very separate things, what kind of loads will that structure carry, what is the importance of traffic volume, foundations, etc, etc, blah, blah?

Back on dry land and stroke self-management, in Bridges World, small steps to big things is the mantra. I call them 'baby steps'. What I have found from experience is that in setting yourself small goals (for me that means easily achievable) and then exploring ways to hit your tiny targets, you reflect on and modify along the way. For example, what a year ago for me was the stated desire to complete a walk of the famous Seven Sisters along the white cliffs of the Sussex coast from Eastbourne to Cuckmere Haven, has mutated into a daily patrol of my neighbourhood on foot, stopping to chat with the locals, telling children to stop being naughty and checking the ever changing world of an inner-city wildlife garden. The dream of walking the Seven Sisters has not disappeared, but it is much less urgent than it was a year ago (I have even done the walk, on a treadmill with Google Earth on my iPad). In this way, by embracing the small steps as an end in themselves, I learn more about myself and can therefore make better decisions about those big juicy goals. 

The approach is even appropriate to activities not remotely related to stroke rehab. Not long ago I used a piecemeal step method to 'build' from visual components a picture of Hammersmith Bridge for my wife's godmother. And she thought I sat around in the cold with a box of paints for several days. Not likely! It's a fake.

Hammersmith Bridge

So how might these 'baby steps' work in a group situation? That is still a work in progress, but I do have one observation from the UCL meetings. I have noticed that motivation is where rehabilitation often stands or falls. I am a very focused and determined person. Most people are not, and I have seen progress in others falter simply because the will to action is simply not there. And in the group work we did at UCL, what surprised me most was the drive shown by some of the group members to help others. They had found a role, a mission, a sense of purpose. They found their motivation, their post-stoke mojo, a reason for doing something. It is as simple as the slogan  'Help others to help yourself'. 

It doesn't take a mammoth leap of the imagination to see that this is potentially very powerful. How systems and structures (the bridge?) can be built to support such a self-sustaining programme of mutual enablement is the question. Making it work is the challenge.

Bend it like Billy: Yoga

If I turn into a Yoga Bore, feel free to shoot me, says Billy Mann. In the meantime ...

To the innocent bystander, the transition from tai chi to yoga must seem like swapping a boiled egg for a poached one. Yes, the two disciplines do have similarities, not least in this case because again we are in the capable hands of Anne and Nora at Headway East London. The key differences between the two (tai chi and yoga, not Anne and Nora) are movement and breathing. Breathing is much more of a BIG DEAL in yoga, and the movement is more structured than in tai chi, aimed often at specific parts of the body. Moreover, whereas you can adapt tai chi exercises into something you can do easily at, say, the bus stop, or in the kitchen while waiting for the kettle to boil, yoga demands more focus, a focus that leads you to "feel" the movements and stretches. 

We started the programme seated, which is a gentle way to introduce the movements. The Cat-Cow is a movement that stretches the back and neck by first rounding the shoulders forward then reversing the movement back while tilting the pelvis, arching the back, extending the chin and chest into what is hopefully a sort of elegant s-shape. Not sure I quite hit the mark on that one. The word elegant did not spring to mind. We went on to do some moves where we sit, hands together, elbows pointing right and left, in a sort of praying pose. Then we breathe in, extend our praying hands skyward as if reaching for heaven, then hold, breathe out, breathe in, extend hands towards the outer reaches of the universe, and hold, breathe out, breathe in, and slowly move your arms back to planet earth in a forward stretch that again arches the back, sticking out your chin and staring meaningfully at that spot on the wall. You then bring your arms first down to the side of your chair, then gather up your hands into your lap in what is supposed to look like a dignified, enigmatic yoga-type pose. I was convinced that I looked the part, but that could have been delusion kicking in.

If this is as far as I ever get in yoga, I shall be quite happy. The Cat-Cow thing could, in my view, be done easily while sat on the toilet. Who knows, we could have discovered a revolutionary aid to comfortable defecation? Send me the cheque. Anyway, I have already been able to build it into my daily routine to the extent that I can sit, stock still, in a straight, aligned and yogistically perfect way (or so I imagine) watching Midsomer Murders and not feel like a dickhead. It helps having a wife who is a Yoga Bore. 

So, well done Yoga. Well done Anne for making it so easy for someone who probably would have previously shot anyone who dared to suggest my life might be improved by this Total Hippy Nonsense. I was wrong, you were all right, and I surrender. Defeat, bring it on xx

Out on a Limb

Nora began the second Tai-Chi class at Headway East London by saying that this week there would be less talking and more action. I'm not sure ACTION was the best word for the level of tai-chi we are at, but you can see where she's coming from.

We revisited the moves we had been introduced to in the first session, but Nora added some seemingly small additions. This, I have come to realise, is very much the tai-chi way, to build very slowly but deliberately. The ball thing is still an enigma wrapped in a mystery for me, but by 'shrinking the size of the ball' to something like the proportions of a tennis ball, I think I might have found a way forward. I even found myself cautiously handling an imaginary sphere during the ad break in Midsomer Murders. Thank goodness I was safely hidden indoors because I must have looked like a right weirdo.

The weight-shifting from one foot to the other in the standing position also progressed to include lifting the heel of the resting foot. This tests the strength and balance in both legs and increases your awareness of any limitations. Nora described this action as floating, but for me it was more of a spring in the step. 

These additions to what we had already learned further established the idea that practising ta-chi is for life and not just for the duration of a short programme. For me it has multiple advantages. Unless I can make exercise a routine and a habit, it is something that becomes all to easy to neglect. In this sense, tai chi  is a good fit because already I actually ENJOY doing the moves. This might have something to do with their simplicity, but who cares? Simple is OK by me. And if I enjoy doing something (writing and drawing, too), I am more likely to continue. As that man says in the film Casablanca, this could be the start of a beautiful friendship.

The slow movement

Today at Headway East London I joined a six-week introductory programme in Tai Chi, run by physio Nora with assistance from Anne. I had some limited prior experience of Tai Chi and had found some of the very slow, low resistance movements, as opposed to the high energy combat stuff, useful in everyday life. The basic moves are relaxing and offer an opportunity to focus and think about nothing in particular. 

We practised some centering and balancing positions before moving on to that thing they do with the imaginary ball, which I had never previously been able to get the hang of. I am not quite sure I got it this time, either. Maybe I was allowing my "monkey mind", or whatever it is called, to boss my head around too much. But I did manage eventually  to get some sort of meaningful movement to work for me by rotating my hands, so that rather than holding the imaginary ball with both hands parallel and facing one another, I held  it in a position in a way that looked like a polite handclap poised and waiting for the moment of contact. That is about the best description I can come up with, I'm afraid.

The other tip I have taken and exploited from Lesson 1 is the balance and centring movement in which you stand, feet hip-width apart, and very slowly and almost imperceptibly shift your weight from one leg to the other, attempting all the time to 'root' your feet in the ground. This movement is very relaxing and almost hypnotic/narcotic in how it forces you to surrender control of your body. It progresses to a tiny lift of the feet on to your toes with each movement. This offers up the kind of dancing motion I have been searching for and is one movement I will be using a lot. It has also helped in developing a method of walking (without stick) in a gentle sway, which I hope will come to relieve some of the pressure my current robotic style of walking inevitably places on my hips and knees. 

Things for me to work on are deep breathing (in and out through nostrils) all the way down to the abdominal core. I can do this in isolation and feel the benefits, but doing it while in movement is, for me, a different matter. I shall keep going with that and report back. 

As Nora told us early on in the session, you are a beginner in Tai Chi for at least 10 years. 

I'm in no hurry.

Memory: the elephant in the room

When he noticed that song lyrics seemed immune from memory loss following brain injury, Billy Mann got to wondering what it is exactly that stimulates our ability to recall and recollect

There are advantages to having a brain injury. At social and formal gatherings you are allowed to forget things. You can walk into a room, be introduced to half a dozen people and instantly forget their names. Then, when you bump into one of them later, they forgive you when you whimper, pathetically, “I’m sorry, but I’ve forgotten your name.”

Memory problems are very common among people with brain injuries. One day a week, I attend Headway East London in Hackney. Some of my fellow members there cannot remember my name from one moment to the next. One of them, Sharon, who I have now been happily greeting each week for around two years, stares at me, her face screwed up in quizzical concentration. 

“It begins with a B...” she says. 

“Yes,” I answer, and wait a few beats. 

“Bobby?" 

"No. Billy." 

That we have arrived at B in two years is, I like to think, some kind of minor miracle.

Another member I see regularly is Stuart, who also suffers from acute memory problems. Stuart and I have a part-share in a backstory. We are both a similar age and we both lived in Liverpool during the late 1980s. Like Sharon, Stuart greets me each week with a confused and inscrutable look. He will then take a guess at my identity. 

"Scouser?"

What both Sharon and Stuart share, other than their difficulties with short-term memory, is a love of music. In Sharon's case, this comes down to a girlish infatuation with The Osmonds, an American family group popular in the 1970s. They were five brothers — Alan, Wayne, Merrill, Jay and Donny. Other Osmonds (Mormons, big family, etc) also enjoyed some commercial success on the 1970s music scene, notably Marie with a memorable song, Paper Roses, and Little Jimmy Osmond with a cheeky number titled Long Haired Lover from Liverpool. The Osmond Brothers themselves had many hit records, but the one that comes to mind right now is 1974’s Love Me for a Reason. It comes to mind because with those five words Sharon's memory is thrown on to some kind of neurological dancefloor and the words come flooding back: 

Don't love me for fun, girl

Let me be the one, girl

Love me for a reason

Let the reason be love

In 1995 the boyband Boyzone attempted their own version of the song, but as Sharon is quick to remark, it was nothing on the Osmonds’ rendition. She might have put it less politely.

The routine with Stuart is similar. In his case we have an ongoing exchange relating to music from 1970s-80s Liverpool (Stuart was a performing musician in the city then). Our first meeting point each week normally involves an exchange of lyrics from a band associated with Liverpool called The Scaffold, a trio that actually started in the heady days of the 1960s and enjoyed notable success during that swinging decade. They were a performing ratatouille of comedy, poetry and music featuring Mike McGear (real name Peter Michael McCartney and brother of Paul McCartney), Roger McGough (he’s that Poetry Please guy off the radio) and madcap funnyman John Gorman. Each week Stuart will smile brightly in my direction and say “Thank you very much for the Aintree Iron” (a line from the Scaffold song Thank U Very Much), to which I will reply “Did you get your medicinal compound, Stuart?” (from the Scaffold song Lily The Pink). Stuart catches on to this game without hesitation and answers with another lyrical reference to Lily The Pink. 

“Yes, most efficacious in every way.”

Clearly both Sharon and Stuart have a thing about song lyrics that makes words stick in their heads. It is a joy to witness, and obviously a potential open door for therapists. But part of me wonders what other memory triggers are sitting hidden in damaged brains everywhere. Could I, for example, attempt a not-so controlled experiment in which I appear casually to mention the character Boss Hogg from the 1980s US TV show The Dukes of Hazzard while actually fishing for a bit of anecdotal evidence on the importance of popular culture in understanding a badly misfiring memory.

Memory is a strange fruit. It is part of that thing we would like to call our soul, but we know little about it. At best I am prepared to stick my neck out and say that memory is the slippery customer that skates the thin ice that separates the neuro from the psycho. There is also something about memory that repels fiddling. Mess around with it and you risk the wrath of the gods, etc.

Which draws me back to where I started. There is another advantage to having a brain injury. I call it the Automatic Exit Strategy (AES). When you are at a social or formal gathering and starting to glaze over with boredom right in front of someone, you can just say, “Sorry, I have to go now” and they won't turn to the person next to them and say, “How rude was that?” I have an agreed version of this with my wife. I say, “I’ll just go and sit down and shut up, shall I?” to which she replies, “Yes, please.” 

OK, then, that's my cue to leave the table. Bye for now. And don’t go trying to tinker with any of those memories while I’m gone.

Sharon is not her real name.