Byron Konizi wants to do away with the word ‘rehabilitation’. He believes he has a better term for brain injury recovery. But this is no lexical whimsy.
His conclusion comes after a decades-long journey into the world of neurological treatment, to the brink of death and back again.
It started with a bike ride at age six that sent him freewheeling onto another life trajectory.
He fell off, sustaining a head injury – the first in a series of traumatic brain experiences in his life.
These dark chapters have shaped a new organisation that wants to bring about a post-brain injury revolution in the UK.
“After the first accident I had stitches but then about a year later started having more serious problems.
I’d be in excruciating pain, in a state of agony, but the doctor said I was fine and probably just wanted time off school.
“Eventually they did a brain scan and there was swelling and bleeding and I was rushed in for emergency surgery. I would have been a goner if they’d waited any longer.”
He had to relearn to walk and talk and, following intermittent bouts of unconsciousness, faced more brain surgery to fix problems with the original operation. He also developed epilepsy.
“I couldn’t read or write for a while after that, although strangely I became really good at chess and won the borough chess competition.”
A further scare followed when doctors spotted an anomaly on his brainstem. They monitored it over six months and Byron’s family were told that he could be in grave danger.
“During that time, I did the whole Disneyland thing because we didn’t know how long I’d be around for,” Byron (pictured as a boy in hospital) says.
Thankfully the anomaly didn’t progress and hasn’t since, although it is regularly monitored.
“I then spent my teens trying to recover and was on lots of heavy drugs which was interesting.
“I was really good at some things but an absolute disaster at others. I found it difficult to participate in all sorts of things. I tried to study for my GCSEs but felt I was coming up against intellectual bullies who would give me a hard time because my concentration and memory were impaired.
“I retained intelligence but just couldn’t keep up with the other kids because my brain wasn’t functioning as it should have been. I was good at short burst stuff but anything that required me to concentrate and persevere I couldn’t do, I would just drift off.
“I went off the rails and also became quite depressed and anxious because I didn’t fit in and had to seek help.”
Despite these challenges, his creative flair shone through and he was accepted at the world renowned art college St Martin’s in London.
He also practiced performing arts and song-writing in his spare time.
Cognitive impairments persisted, however, and he struggled to cope with the rigours of his education and dropped out.
Byron was then able to access neuro-rehab services in Cambridge which “helped me to understand my brain injury”.
“I got back to my studies having been accepted back at St Martin’s but started realising there was always a barrier to how far I could go because there was always administration, paperwork and bureaucracy that my brain couldn’t cope with.”
By his early 20s, he was working as a graphic artist and designer and secured a position in the London Mayor’s office as an adviser for inclusivity and equality.
Career highlights included helping to design the London 2012 Olympics mascot and creating a tube map for people with disabilities and certain health conditions.
“I also wanted to set up a charity to help people like me but I just couldn’t do it.
“Everywhere I’d go to get funding and support, it was all paperwork and administration, which I couldn’t do. It was ironic since that’s exactly the sort of thing I wanted my organisation to help people with.”
At age 30, Byron sustained yet another brain injury, from “a whack on the back of the head in Central London” which he can’t discuss in detail for legal reasons.
“I had to have all the old surgery redone. Following the operation I lost my sight for a period of time and I was very poorly.”
The incident came just as a flourishing career as an actor was developing, having featured in various TV and radio productions, including Zoe Ball’s Book Club and the hospital drama Casualty.
“Everything fell apart again and I had to spend the next year recovering.”
That wasn’t the final curtain for his acting career though. In 2017 he was the lead in the short film I used to be famous, which won several independent film awards and was shown in film festivals across the globe.
Byron played a musically gifted man with autism, alongside Naomi Ackie, who is now featuring in the latest Star Wars blockbuster.
The role prompted a letter of praise from Sir Roger Deakins, the cinematographer best known for work on the films of the Coen brothers, Sam Mendes, and Denis Villeneuve.
But his big passion project now is helping other people affected by long-term health conditions, including brain injury.
“I had a lot of sadness about the mistreatment of people with neurological conditions.
“Two close friends had died and I’d lost another friend I’d made while in hospital having surgery and I just wanted to do something to help people like those I’d lost.
“I’d also been involved in the brain injury APPG (all-party parliamentary group) at Westminster and spoke out quite angrily at what I thought was a failure to properly support people with brain injury in this country.
“The government could save millions of pounds and many lives if it addressed the issue which I didn’t feel was being taken seriously enough.”
Out of these experiences – and all that has passed since he came off his bike as a six-year-old – came his new innovation UDAV, “the world’s first Cocooge centre”. The word Cocooge (pronounced cocooj) is very significant to Byron.
“This is our challenge to the use of the term ‘rehabilitation’ in relation to neurological trauma.
“I believe ‘rehabilitation’ to be mostly inappropriate and controversial because it is rare that people are truly rehabilitated following a neurological trauma.
“The term can perhaps be seen as creating an unachievable goal and possibly false hope for many. Rehabilitation suggests the objective is to return to one’s original state.
“Cocooge better describes the actual process following a neurological trauma. It’s a combination of cocoon, meaning to incubate, and refuge. It means the process of protected incubation that immediately precedes reinvention.
“Like a caterpillar emerging as a butterfly, it suggests that an irreversible change has taken place.
“From my experience, this is a crucial stage in progressing to the next stage in life, perhaps even to something far greater than their original state.”
Byron has opened what he hopes will be the first Cocooge centre of many in his native Hackney in North London.
It is run under the umbrella of the charitable organisation he founded, UDAV.
It is designed for people marginalised due to the fallout of brain injuries, neurological conditions or other long-term health conditions.
“The aim is to help them to reinvent themselves in a way that allows them to thrive, in their future careers and their lives generally.
“There’s a glass ceiling for many people with neurological conditions. As soon as you want to do something people start bombarding you with paperwork, admin, asking you to go through processes that you can’t do.
“So then you’re asking yourself where do I go in life? What do I do? And you end up isolated and alone.
“So what I’ve created is effectively a community centre that gives people a sense of belonging, and supports and protects them.”
Through creative activities, bringing together a cast of arts and culture groups and practitioners, the centre’s overriding aim is to help people with neurological impairments “to evolve” rather than stagnate in life.
It’s early days for the organisation but current initiatives include a photography studio at the centre, sign language lessons and various art and music projects.
“A lot of the people we’re helping actually worked in creative sectors but had to stop because of their trauma. For example, we have a lady who used to be a TV producer whose career ended because of a brain injury, we also have an artist with PTSD and a photographer with a brain injury.
“All of these people are really good at what they do but because of their injuries and conditions, they can no longer do them professionally.
“We pull them in and support them through workshops, health initiatives and other activities which keep them busy, helping them to evolve. But also they check in here just to see their friends.”
One member is a photographer and survivor of multiple strokes.
“He’s a really good photographer but he can’t do the social stuff required to arrange the models and so on.
“We’ve not only provided him the premises but also arranged for fashion designers and models with long- term medical conditions to come in and work with him. We’ve also got a brain injured graphic designer, so it all fits together.
“We basically help them with the things they can’t do. We all work together and make good things happen and give everyone something to belong to.”
The launch of the organisation has been backed by London property developer and entrepreneur Jack Baswary who provided UDAV with the necessary support needed to get it off the ground.
UDAV is keen to work with further investors and partners as it aims to open Cocooge centres across the UK and internationally too.
For more information see www.udav.world
Making the shift from victim to survivor
After having a stroke two years ago at the age of 39, former international swimmer Craig Pankhurst founded the charity Stroke of Luck to support stroke survivors through activity and exercise. Jessica Brown reports.
“Stroke survivors are in one of two places – they either see themselves as a victim, with a not very positive outlook,” Pankhurst says.
“Or they see their stroke as a bump in the road, but that no one will stop them from having a fulfilled life, just one that’s different to the one they were leading before.
“We put in a halfway line to move people from the victim to survivor mentality.”
Pankhurst wanted to build the charity’s website to enable interaction between stroke survivors and experts in neuropsychology and personal trainers trained to work with special population groups.
When the coronavirus pandemic hit the UK in March, Pankhurst decided to do live sessions on social media, where he brought in guests and spoke about his experience and the charity he’s set up – and says he got good interaction with viewers.
His efforts caught the attention of the World Stroke Organisation, which partnered with Pankhurst to create videos for stroke survivors for what they can do to aid their recovery safely at home, with the help of specialist physiotherapists.
The videos are uploaded by both Stroke of Luck and the World Stroke Organisation.
“I spoke to the World Stroke Organisation over a number of weeks and we agreed to collaborate to create story-specific exercise and activity videos for stroke survivors, to start releasing over 12 weeks, to see if they get good engagement.
“Then we’ll carry on, and do some more,” he says.
The videos are now organised into a library, colour-coordinated into red, amber and green, depending on the viewer’s ability. The library also includes specific videos for carers.
The man who couldn’t see numbers
The unusual case of a man who can’t see numbers has led researchers to argue that the brain can process things without a person being aware of what they’re looking at.
Researchers from Johns Hopkins University studied a 60-year-old man known as RFS, who has a rare degenerative brain disease that prevents him from seeing numbers two to nine.
He would describe seeing one of these numbers as a tangle of black lines that changed every time he looked at it. He had otherwise normal vision, and had no problem identifying letters and other symbols.
The problem would happen before he knew which number he was looking at, which meant his brain had to at least know that numbers were in the same category before something could then go wrong; study author Mike McCloskey tells NR Times.
“It didn’t matter how we presented digits to him, they were always distorted,” says McCloskey, a researcher in the Cognitive Science Department at Johns Hopkins University.
The researchers didn’t know what they were looking for when they started working with RFS, as this specific pattern has never been recorded before. The closest recorded cases are of patients who see distorted faces.
The researchers, whose findings were published in the journal, ‘Proceedings of the National Academy of Sciences,’ also found that RFS couldn’t recognise anything placed near or on top of a number.
They recorded RFS’s brainwaves while he looked at a number with a face embedded on it, and found that his brain detected the face, even though he was unaware of it.
“In one experiment, we showed him a big digit with a face on top of it and recorded EEG signals to see how his brain responded to the face.
“Even though he couldn’t see the face at all, we could pick up a response in the brain 170 milliseconds after the face was presented.
“We saw a perfectly normal brain response to the face, which told us his brain unconsciously identified the face as a face, even though he wasn’t aware of it at all.”
In another experiment, they put words next to the numbers and told him a target word. When he saw the target word, his brain had a bigger response even though he said he couldn’t see the word. They also did tests where they placed a number in front of RFS and asked him to guess what a number was, to test implicit knowledge.
“Sometimes, blind people say they can’t see a light, but can often point to it accurately when forced to make a guess,” McCloskey says.
“We did that with him and saw absolutely no indication he had any implicit knowledge. He couldn’t tell us if numbers were the same or different, odd or even – yet the EEG showed his brain was responding.
The reason it could just be numbers that are affected, he says, is because evidence suggests the brain treats categories of things differently.
“Furniture, fruit and vegetables, for example, may be treated separately, so it’s possible for some areas to be affected and some not.”
The findings demonstrated that the complex processing needed to detect words, numbers and other visual stimuli isn’t enough to make a person aware of what they’re seeing.
“We can draw conclusions about what’s necessary for you to be aware of what you’re seeing. You’d think that, if the brain has done enough work on something to know it’s a face or a particular word, you’d be aware of it.
“These results tell us the brain can do an awful lot of processing on something you’re looking at without you being aware of it at all,” McCloskey says.
“Something else needs to happen after the brain has identified what it’s looking at before you become aware of it at all. ”
And the reason these findings apply to everyone else is because the researchers assumed RFS’s brain was the same as anyone else’s, except for this one thing that went wrong.
“In order to become aware of something, you have to do more than processing to allow you to identify what you see – we think this is true for everyone.”
As for RFS, who was a geological engineer, the story has a happy ending.
“Because RFS couldn’t see regular digits, this was a real problem for him. We created a new set of symbols for him for digits, to see if he could use those,” McCloskey says, as well as a calculator on his phone using the digits.
“He learned them very easily – we wondered if they’d get distorted for him but fortunately, they didn’t. He says he’s been using the symbols ever since – he uses them in his daily life and stayed in his job two years longer than he would’ve otherwise, because of them.”
“Assume brain injury” after domestic violence, researcher urges
Domestic violence survivors in hospital should automatically be tested for traumatic brain injury (TBI) because they, and doctors, may not be aware of the symptoms.
That is according to researcher Jonathan Lifshitz, director of the Translational Neurotrauma Research Programme at the University of Arizona’s college of medicine.
When a patient goes to the doctor with a cough, they’re tested for numerous diseases to rule them out, but with intimate partner violence (IPV), Lifshitz says, we should “flip the script”.
He tells NR Times: “If the individual doesn’t have encyclopaedic knowledge of what TBI is, they may not offer all the symptoms up to their healthcare provider.”
Similarly, the brain injury itself may prevent the patient from being able to detect their symptoms.
Instead, practitioners should suspect that victims of IPV have a head injury, so they can be tested.
“If we tested all people experiencing intimate partner violence for TBI, and are able to screen them using objective tests, we’re going to have far fewer people who experienced intimate partner violence and go untreated,” he says.
In one study, Lifshitz found that 62 per cent of people subject to IPV and diagnosed with TBI were unaware of their TBI when they sought treatment.
While it’s a challenge to determine that someone has TBI, the risk of missing something, Lifshitz says, is much greater. And while increased testing would incur more cost, due to additional testing, Lifshitz says it would save money.
“An individual may be able to hold down a job better, be less dependent on services and won’t need healthcare services as much in the long run,” he says.
Lifshitz is involved in the Maricopa County Collaboration on Concussion from Domestic Violence (MC3DV), a county-wide collaboration in Arizona. It aims to increase the suspicion of head injury by analysing health data for patterns and problems that can be targeted with a county-wide approach.
It educates police officers to recognise symptoms, social workers to better identify abusive relationships, emergency services to profile forensic evidence and clinical partners to assess and treat symptoms of TBI and concussion.
Also, prosecutors through the Maricopa Country attorney’s office are supported in being able to build their case against the assailant; while scientists and process developers also help to bring everything together.
Meanwhile, social workers and nurses are educated on the signs and symptoms of TBI, proposing an objective measure where head injury is implied.
Hospitals are a key area of focus for MC3DV, where one challenge is rebuilding trust between medical practitioners and patients who have previously suffered discrimination, and as a result have a lack of trust.
“It would be easier to implement this change in one crisis shelter or emergency department, when we have the opportunity to regulate and control the organisation we’re working with and we can put in new policies and procedures,” Lifshitz says.
“When trying to coordinate multiple systems in multiple organisations, it’s much more challenging.
“While everyone is receptive to the topic, the problem is having enough resources to do it.”
MC3DV is also hoping to replicate state-wide efforts made in 2012 to better detect evidence of strangulation.
As a result, Maricopa County prosecutors attributed the rise in domestic violence prosecution and decrease in domestic violence deaths to this change.
“Arizona recently changed the way the legal system deals with strangulation, in terms of how it sees evidence,” Lifshitz says.
“Prosecution is much more rapid and severe; it’s unburdened the legal system because many more cases are starting as guilty.”
Lifshitz hopes better testing and evidence gathering will act as a deterrent for abusers, and provide additional motivation for victims to step forward, although, he concedes, psychological, emotional and financial controls an intimate partner has over their victim complicates this scenario.
“A patient wanting to seek treatment is very different from the ability to seek treatment,” he says.
Lifshitz hopes there will be some real changes to come out of the research programme.
“I’ve always needed a bigger social driving force to keep me motivated. It’s unconscionable to know about this and not do anything about it.
“This programme helps to bridge the gap between social work, police work and biomedical research, to attack this problem from multiple angles.
“The majority of the work we do is stepping back, looking at what healthcare data we might have, and asking very specific questions.
“We sit around the table not necessarily with the smartest people, but with the most passionate people. It’s not any one person doing the work, but relying on a community of providers to support the victims and warn abusers.”
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