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Movement without touch: the life of Ian Waterman

When I first met Ian Waterman in the mid-1980s I could scarcely believe him. He claimed to have lost touch, and movement and position sense (termed proprioception) below the neck, though he could still feel pain and temperature, and his movement nerves were unaffected. Not only was I not aware of any such condition in medicine, but he had walked to the clinic and was sitting calmly as we chatted. How could his apparently normal functioning be reconciled with sensory loss which should have led to complete loss of coordination and useful movement? Tests soon showed his problem was exactly as he described it and, that when deprived of vision he was completely hopeless at moving, as expected. He had lost all automatic movement and was doing everything, instead, by attention to all aspects of movement, with vision to tell him his intentions had been successful.

For his part Ian hated doctors; he had had the condition 12 years by then and doctors had helped little. He viewed me, a young clinical neurophysiologist, with supreme suspicion. But then, having done the clinical thing, I sat down with him and asked just what it was like to live without touch and proprioception. No one had ever asked that before and Ian was intrigued.

That was the beginning of over 30 years’ collaboration. We’ve done research in labs across the United Kingdom, Europe, and the United States. It was soon clear how astute Ian was at judging research and researchers, so we do work with Ian never simply on him. He has also been the subject of a BBC documentary, been portrayed on stage, hung out with Oliver Sacks, and even flown in microgravity. Working together on the science, as well as spending long periods travelling and hanging out in hotels, restaurants, as well as the odd dive, has involved fun times as well as work. But his life has not been just research; he runs a successful business performing access audits for hotels, banks, trains, and hospitals—using his need for close attention towards movement in the built environment to his commercial advantage, as well as being the mastermind behind Pedigree Turkeys, which breeds rare types of turkeys and poultry. And he has been married three times.

Ian Waterman and Jonathan Cole at Ian's wedding to Brenda
Ian Waterman and Jonathan Cole at Ian’s wedding to Brenda. Used with permission.

I wrote about his early years, learning to move again, escaping after 17 months in rehab and of his triumph over disability in 1991 in Pride and a Daily Marathon. But now, 25 years later, we wanted to explore living without touch and proprioception over four decades, as he turned 60 and as he has come to terms with his impairment in deeper ways. So we’ve sat and talked, digital recorder running, as we built up his reflections on a remarkable life. Despite living with the condition for 40 years, Ian is still as vulnerable as ever, and any reduction in mental effort towards movement, whether due to a head cold or the lights fusing, takes him back to stage one again.

We wanted to explore how the neuroscience was actually done and Ian’s contribution to the understanding of touch and proprioception. We also focussed on how he moved from being a passive participant to become an astute collaborator and even critic of neuroscience and neuroscientists. For Ian, neuroscience is not impersonal either but, rather, uncovers his tricks and strategies for living, especially when investigating his sense of intimacy without touch and his use of gesture without automatic movement.

Ian has also fascinated more than scientists. He has been a subject of vignettes in two Peter Brook plays and worked with magicians, philosophers, and choreographers—awakening them all to the importance of proprioception and its loss. To each and all, Ian has made himself available and answered questions as best he could.

We were keen to describe Ian’s life and his experiences not just during experiments but over decades. So often science dips in and leaves; living in a condition for years and decades gives a perspective and insights not to be found in shorter accounts. The great Russian neuropsychologist, Alexander Luria, did this in his narrative biographies and I have tried to do the same in my previous books on spinal cord injury and facial immobility. People live a long time with their conditions; the longer view and mature reflection are necessary, even essential, to understand how living successfully with an unusual condition evolves by subtle and creative means.

Featured image credit: touching by Paul J. Everett, CC BY 2.0 via Flickr.

Recent Comments

  1. Ian Waterman

    Jonathan makes me sound so interesting, and it is strange to see my journey and events all gathered together.
    I consider my self a work in progress, just getting on with life. It was a chance meeting with Jonathan that opened the world of neuroscience and research to me, and for that I will be eternally grateful.

  2. Ian Waterman

    Jonathan makes me sound so interesting, and it is strange to see my journey and events all gathered together.
    I consider my self a work in progress, just getting on with life. It was a chance meeting with Jonathan that opened the world of neuroscience and research to me, and for that I will be eternally grateful.

  3. Barbara J Bradford

    My son seems to have similar symptoms and has been in several hospitals and Acute Rehab facilities-all without diagnosis since November 2017. His affliction started overnight, accompanied, however by intense pain. I would appreciate any advice you could give for addressing his condition

  4. Sharon Reiley

    I recently had surgery to remove a cavernous hemangioma that had hemorrhaged from the middle of my spinal cord, and my neurosurgeon made a calculated decision to cut the cord in a way that would preserve my motor function, but would affect my proprioception. I was searching online to find a way to explain to people how I feel and how it can look like I am recovering so well, although it doesn’t really feel as good as it looks. I stumbled upon The Man Who Lost His Body, and I was not only awe-stricken by Ian Waterman’s self-driven ability to control his body, but I was also so grateful to hear someone else describe the way my legs felt after my surgery. Being able to sense hot and cold, and to feel pain – but not touch… Being able to move my legs, but not know where they are… It’s challenging at night when I want to turn over, but I’m not sure where they are in the bed… I keep calling them my “crazy legs”! My surgery took place at T-11, so obviously, I do not have nearly the amount of struggles that Ian or Jonathan have, but I am certain that their contributions to science have helped direct the medical treatment and therapy I have received. So I hope this comment will somehow reach you, so I can say thank you. I am certain I will walk again (at least with my eyes open, lol!) And who knows exactly how much healing will occur, but in the meantime that video truly helped me make sense (no pun intended) of what was happening in my legs. Now I know the reason my ankle keeps turning in is not muscle weakness- it’s just that when I’m not looking at it, it has a mind of its own. (Like when I’m trying to walk and the foot is in the part of the stride behind me, out of my view.) And I realize the importance of keeping an eye on my feet when I’m standing because otherwise it will do it’s own thing, which is obviously dangerous. This documentary has directly helped me understand my own body. So thank you both again!

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