Who do we get our inspiration from?

Modelling matters. The strongest inspiration comes from your peers. So it doesn’t matter what the doctors or physios or nurses say – the person facing a mountain of rehab will never be truly convinced by them. What he or she needs is inspiration. And that often comes from meeting someone who has already travelled the route they are going – and reached a destination. For Jeff Bauman, being a bilateral above knee amputee was bad. Only when he saw soldiers with leg amputations walking into his rehab gym did he really believe that he would walk. Only when he … Read more...

How do you perceive the world?

Everyone experiences reality in a slightly different way – but unless we describe those experiences in great detail, the differences between them go undetected. Biologist Mia Tomova has described in detail how her visual imagination seems lacking compared to that of others, a condition that is called aphantasia. She is unable to construct images of things in her mind’s eye. It is hard to know what other people see in their mind’s eye, just as it is hard to know if you see the same blues as I see when we look at the sky. Mia is probably correct … Read more...

Authenticity

I’ve been reading Lance Armstrong’s memoir, It’s Not About the Bike – the one he wrote before the drug-controversies, before David Walsh and the Sunday Times campaign, before the confession on Oprah, before the Tour de France victories were removed from the record books… It’s the memoir that tells the story of his fight against testicular cancer, and his subsequent return to health and cycling.
And it raises an issue about authenticity. Does it matter if an illness narrative is slightly stage-managed? Does it matter if the events were not quite as they are presented? Or if the lessons for … Read more...

Acceptance – again….

If acceptance is hard to describe and recognise after one-off life-changers like spinal cord injury or stroke, what does it look like after diagnosis with progressive diseases like Multiple Sclerosis, or MND, or Parkinson’s Disease?

The shifting currents of acceptance and denial often start before a neurological diagnosis. When do odd symptoms like pins and needles become part of a pattern which requires investigation, and how long do you ignore them? When confronted by resting tremor in his little finger Michael J Fox initially refused to acknowledge its importance. Christian Donlan’s first symptoms of MS were a clumsy missing of … Read more...

Acceptance and ‘denial’

Acceptance is a slippery word. In the stories of illness, and recovery from bodily disaster, people use it in different ways and with shifting accents. I am going to point up some of these here.

Some people regard acceptance as essential in order to be able to move on from the present. Young rugby enthusiast Henry Fraser is one of these. His cervical spinal cord injury was a complete injury and at the level of impairment his loss was unequivocal. It was clear which muscles had lost their innervation, and would remain so, and which muscles Henry needed to retrain. … Read more...

Do’s and Don’ts for Clinicians

Julia Fox Garrison’s Basic Do’s and Don’ts for Doctors are hidden away in the Appendix of her memoir, but they are worth bringing into the open. They apply to all clinicians. (Amazing how such positive requests can emerge from a book that so often points up where Doctors and other clinicians are failing to listen.) These Do’s and Don’ts also chime so closely with Jill Bolte Taylor’s requests that the reader begins to see that this is not just an individual request, but the common reaction to prevalent behaviours in health care.

L.I.S.T.E.N.
Lead. Lead the patients without … Read more...

What a dazzling world!

Our world is bright, noisy and colourful. But just how bright, noisy and colourful? Several writers, in the aftermath of concussion and brain injury, have reported on the almost unbearable intensity of sensory experience. Elizabeth Lopatto tells us that, as she recovered from her mild brain injury, ‘everything is brighter and louder than we realise’ and that she was unable to filter sensory inputs. ‘Bright light and loud sounds could trigger smaller, migraine-like [headaches], so I wore sunglasses every time I left the house.’ She could not cope with the noise in coffee shops and airports, or the screeches of … Read more...

The Body-Mind divide (again)

This division between mind and body is a persistent one. It makes sense that this ‘I’ that takes decisions and controls the body, is separate in some way from the body it controls. But things aren’t apparently as we experience them (or at least as we experience them cognitively).
Accounts of depression describe a long list of bodily symptoms resulting or accompanying the depression. Matt Haig describes the physicality of his depression and anxiety: ‘the heart palpitations, …aching limbs, …sweaty palms, …tingling, and …total-body fatigue’.
Authors seem to be less aware of how the body influences the brain, but there … Read more...

Aphasia and body language

Have you noticed how literal and wordy we are, and how little we notice body language? People with aphasia are the opposite.
I have been reading memoirs about and by people with aphasia and language problems, and aphasics all seem to become more alive to body language and the meaning that lies behind facial expressions. John Hale was already an excellent actor and mimic before stroke abolished his language, but his wife Sheila observed how much more sensitive he became to gesture and tone of voice. ‘Those with reduced comprehension of language are able to understand the gist of what … Read more...