Spinal injury latest
Marathon suit campaigner Claire Lomas was a “pioneer”
Marathon suit campaigner Claire Lomas was a “pioneer” who made a “huge difference,” a spokesperson for the manufacturer of her ‘bionic’ suit has said.
Lomas, who gained fame for her record-breaking walks after being paralysed in a riding accident, passed away in Jordan on August 22.
The 44-year-old, who raised nearly £1 million for charity, was described by Larry Jasinksi, chief executive of Lifeward – previously known as ReWalk Robotics, as a “remarkable” woman.
Lomas completed the London Marathon in a ReWalk Personal Exoskeleton suit.
The suit is equipped with braces to support the legs, motors to assist in joint rotation, and sensors that allow the user to control movement.
Lomas said: “But we never envisioned people doing marathons, which is about the first thing she did just a few months later. So she really tested it.”
Lomas completed the London Marathon in 2012, raising funds for the charity Spinal Research.
She also participated in the Great North Run in 2016, earning the nickname “bionic woman.”
Lomas played a significant role in the development of the suit, with the technology adapted to better suit other users.
Jasinski said “She affected the whole industry.”
He added: “She went through a devastating period and emerged from that as a person who wasn’t afraid of anything.”
Reflecting on her legacy, Jasinski said: “On a personal level, she had this very direct honesty about her injury and how she’s learned to be happy and what she had to go through.
“Her ability to explain that to us, to our engineers, and more importantly, to the world at large, was just remarkable.”
“I would say she was a dreamer. She had dreams – she followed them, she didn’t let paralysis get in her way.”
The Foreign Office confirmed that it had supported the family of a woman who died in Jordan.
Ex-rugby star shares paralysis recovery story in new documentary
In a new documentary ‘The Mountain Within Me’, former England and Wales rugby star Ed Jackson has shared his inspiring journey to recovery following a near fatal accident that left him paralysed.
After breaking his neck diving into a swimming pool, Jackson was left completely paralysed from the shoulders down and told by doctors he would never walk again.
The former rugby star has now shared his remarkable feat of recovery and journey to becoming a mountaineer in a new documentary – from the first wiggle of his toes to scaling the heights of Yr Wyddfa, the Alps and the Himalayas.
Described as a story about unexpected change, hope and finding renewed purpose in life, The Mountain Within Me follows Ed as he challenges his medical prognosis and takes on the physical and mental challenges of recovery following this life changing spinal injury.
Speaking to the Doncaster Free Press about his accident, Jackson commented: “It was really mundane actually, I walked down to the side of the swimming pool, took off my t-shirt and there was a feature pool in one end so I couldn’t see how deep it was and I just jumped and dived in to cool off and what I thought was seven or eight feet deep, turned out to only be three feet deep.
“I hit my head very hard on the side of the pool, dislocating my C6 and C7 vertebrate which rendered me completely paralysed which isn’t ideal when you’re in a swimming pool.”
Jackson went on to say: “I was fortunate enough that I had an incomplete injury, if I’d had a complete injury, I categorically would never recover. I’ve been able to recover within the scope of my injury and I wanted to get the the top end of that.
“My support network is one of the main reasons I got there and not everyone has that.”
The Mountain Within Me was released in UK cinemas on 23 August.
The toxic politics of incomplete and complete spinal cord injuries
Ruth Hunt, a journalist and columnist who lives with spinal cord injury, talks about stigma from within the disabled community, and discusses Melanie Reid’s memoir The World I Fell Out Of on the “complicated politics of incomplete injuries”.
When I first sustained spinal cord injuries in 1989, I was aware there was stigma around disability issues, but at that time I didn’t know that some of it would come from within the disabled community.
I was treated at the first hospital closest to the incident, and I was lucky to have a spinal surgeon who had a particular interest in my sort of (burst) spinal cord injury (SCI). As I had a SCI, I became a patient at the regional spinal cord unit as soon as I was discharged from that first hospital.
When I got my appointment for the spinal unit, (something that became a yearly event) I remember being in the busy outpatient’s area. Patients were talking to each other. At one point I was admiring the wheelchair of the man who was sitting next to me. When I asked him whether the chair gave good support and was comfortable, he replied by asking a question: “Are you complete or incomplete?”
Spinal Research: revolutionising spinal injury care
I hadn’t heard my diagnosis reduced to one word before, but this became my introduction into the toxic politics within the SCI community. That’s because the terminology and the subsequent care would leave me feeling ‘less than’ or ‘not disabled enough.’
I asked Dr Jane Duff, Consultant Clinical Psychologist/ Head of NSIC Psychology Team at Stoke Mandeville Hospital about this stigma towards those with incomplete injuries.
Dr Duff said: “Research with people with incomplete injuries such as cauda equina who may partially use a wheelchair, has found they can feel they are not disabled enough compared to full time wheelchair users and that the invisible aspects of injury such as bladder, bowel and sexual function are often underappreciated for the substantial disabilities they can bring with consequent negative impact on someone’s identity and quality of life.”
This negative impact was something award winning journalist, Melanie Reid, picked-up, calling it the “complicated politics of incomplete injuries” in her superb memoir The World I Fell Out Of.
Initially her injuries, sustained in 2010, were described as complete but later changed to incomplete.
She recalls a time when mentors were brought onto the ward. Noticeably, only one man had incomplete injuries, using sticks to walk, but all the other mentors, at the time, had complete injuries.
Those with complete injuries were called completes, and Melanie said that with a “certain edge” the other patients with incomplete injuries, (who might be unable to walk) were described as walkers.
In terms of care on the wards, Melanie described it as understandably directed towards those with complete injuries. But in the gym, though, her physiotherapist made huge efforts to help her develop function.
With spinal cord injuries being on a spectrum, and unique to that person, this broad-brush approach of dividing patients up into two groups using the terminology of ‘complete’ and ‘Incomplete’ can be fraught with danger.
Nobody is saying those with complete injuries don’t need additional care and treatment.
Instead, the argument is therapy should fit each patient. But this isn’t always happening.
For example, when Adam sustained his SCI last year and received his initial diagnosis, there was a plan: “But when my diagnosis altered from complete to incomplete, the plan didn’t change.”
With the change to ‘incomplete’, Adam was keen to get the therapy needed so that he might be able to get more movement back, but all the therapy he and others on the ward received was for those with complete injuries such as using a wheelchair and wheelchair skills.
Adam said: “This meant I had to privately fund the rehab I should’ve received while I was in the unit. It’s very frustrating.”
Charlie experienced very similar treatment when he sustained incomplete spinal cord injuries in 2003.
He noticed the physical therapy was directed towards those with complete injuries
Charlie said: “The complete patients got more assistance from the nurses (understandably so) but also more support from all the other teams like psychology where time for those with incomplete injuries was rationed.”
He also got the impression from how the staff and patients that complete injuries were the ‘true’ spinal cord injuries. Charlie said: “Complete injuries were whole or full – the right way to be but incomplete injuries appeared to be lacking and somehow missing the wholeness of a complete injury.”
When Charlie left hospital, he hoped this stigma between complete and incomplete injuries would subside. Instead, he found multiple people online saying his L1 spinal cord injury wasn’t ‘really’ a spinal cord injury. Being around such messaging, Charlie said: “I felt my injury was less significant/worthy/valued than others.”
David had a much better time in hospital that Charlie: “Some people had complete injuries and others had incomplete injuries but the fact we were all in the same situation meant we were able to talk to each other.”
But that level of support he got while in hospital vanished when he was discharged – leaving him to have to search the internet for help when he needs it.
He has also found talking to people outside, who don’t have that level of understanding about complete and incomplete injuries, can be quite isolating.
David said: “The usual things people take for granted, can be a major challenge, but they don’t see this. Also, they don’t see the hyper-sensitivity, the good or bad days, spasms, toilet function and all the other things bits that go into having such an injury.”
He misses the camaraderie he had on the ward. “Just being able to have a coffee and a general chat with people with similar experiences.”
Charlie on the other hand felt he wouldn’t access support groups, even if he could go to one.
He said: “If I’m completely honest, there is a fear of being judged, due to not being as seriously injured, like it was on the ward.”
That weird feeling of being in a world where you can be ‘significantly injured’ but be judged as ‘not quite as injured’, was something Melanie Reid described in her book.
Reid realised many people who had what doctors described as ‘incomplete’ injuries, didn’t fit into either group, instead they “existed in a non-functional torturous limbo in-between. Our bodies are irrevocably damaged, but a lot less than some.”
Those with incomplete injuries do know they are more fortunate than those with complete injuries, and this is not a criticism of them. Incomplete injuries come with challenges, but these often haven’t been given the attention and care they deserve, first in hospital and then in the wider world.
R.F. Hunt, freelance journalist and author.
The World I fell Out Of by Melanie Reid is available here, as well as any other bookshops https://www.amazon.co.uk/World-I-Fell-Out/dp/0008291373
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