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On the road to reinvention

London actor and creative Byron Konizi has emerged from years battling the effects of brain injury with a plan to help others like him, as Andrew Mernin reports.

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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

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Insight

The psychiatrist fighting for domestic violence victims

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Australia’s New South Wales government has promised to improve brain injury testing for domestic abuse victims after a psychiatrist drew attention to inconsistent care for vulnerable women. Psychiatrist Karen Williams urged the government to adopt a concussion protocol for family and domestic violence victims after doing her own research and being shocked at what she found.

It started when Williams noticed the disparity in how her patients were diagnosed and treated.Williams specialises in the treatment of post-traumatic stress disorders (PTSD), often with military, police, emergency personnel and other first responders.

But she also treats the general population, the vast majority of whom are women with histories of child and domestic abuse.

“I was getting two populations,” she tells NR Times. “The military patients, who are clearly identified as having PTSD, and the female population, who are mostly identified as having depression, anxiety and personality disorders, but had incredibly high rates of abuse in their histories.But Williams saw that whilst both groups had similar symptoms, and similar levels of trauma, they had very different treatment options.

“There’s a lot more funding put into supporting traumatised soldiers and first responders than there is for women who have experienced trauma within their home.

“In Australia, we don’t have much at all for women and children victims of abuse.”

This was a particular concern because of the amount of times Williams had heard about multiple head injuries and concussion among women who were victims of domestic abuse, which is similar to boxers and those player high contact sports.

“Women who’ve been unconscious several times or strangled have symptoms such as memory deficits, insomnia, migraine and mood swings, which all could be put down to PTSD and depression, but also brain injuries.”

But if Williams wanted to find out if a patient had a history of brain injuries, she would have to refer them for neuropsychiatric testing, which costs up to AUS$1000.

“This is completely unaffordable for many abuse victims so it just doesn’t happen, so we don’t investigate women who’ve had brain injuries.

“One brain injury unit told me they would consider taking on a patient if they could provide evidence that an assault happened – such as hospital records.

“This completely fails to take into account that the vast majority of domestic violence survivors will not report any assault to anyone and will not have so-called evidence.”

Then, Williams was speaking to a colleague whose son had had a head injury in a sporting field.

While they were together, a nurse rang to follow up the treatment he’d received in the emergency department.

“The nurse asked how her son’s personality and memory was, and gave a fantastic run-down of the symptoms that can happen after a concussion,” Williams says.

Williams was shocked – she’d never heard of someone ringing up women after a head injury in a domestic violence case.

She rang the local emergency department and asked about their protocol following a head injury obtained during sport.

She was given a detailed outline of the observations they take, their plan over the weeks following the patient’s injury and the advice they give the patient.

Williams called several emergency departments in other Australian states, and whilst all had a protocol for sports players following a concussion, none said they had a protocol for women who had been the victim of domestic abuse.

“There wasn’t one place that said they had a particular protocol.

“If they knew the woman had had a head injury they’d give them the basic head injury protocol, but nothing specific that took into account the very individual needs that a woman with a head injury in a domestic situation might have,” she says.

Williams says research indicates health care professionals correctly identify family violence victims about one per cent of the time.

“In sporting players’ protocol, there’s a recognition that says that your patient may not know what they’ve experienced in the past was a head injury, so the advice is to be really explicit. They’re given a list of questions to break it down with that player to make sure they understand what could be a head injury.

“There is opportunity for scanning, and neuropsychological testing if there is evidence of persistent symptoms.”

Williams says doctors should be going through the history of women, too, to see if they’ve lost consciousness in the past.

“There are a variety of mechanisms in which a woman experiences brain injuries in a domestic situation, many more than sporting probably, and the more head injuries a woman has, the greater her chance of long-term problems,” Williams says.

This includes a higher risk dementia, PTSD, migraines, learning problems and memory problems.

“But women aren’t told this, so many don’t know that they’re at risk of these things.”

Williams says there is a ’hidden epidemic’ of women in the community with brain injuries no one knows about, who could have been diagnosed with mental health issues instead.

In 2018, Brain Injury Australia released its findings after looking at the prevalence of brain injury in victims of domestic violence.

It found that 40 per cent of victims who attended hospitals in Victoria, Australia, for domestic violence had a brain injury and the majority were women.

But there’s no specific treatment for these women, Williams says, and many won’t even know they have a brain injury.

“Abused women are a very neglected population, and when you think about the money being spent on sports, and sports players, there’s no reason we can’t look after woman as well,” Williams says.

But despite these findings, Williams says it didn’t lead to any change.

“When I found all this out, I was angry and upset,” Williams says.

She arranged to meet New South Wales’s Labour MP Anna Watson in August, and when Williams told her what she’d found, she says Watson was ‘mortified’.

“She immediately got on the phone with the office of the minister for the prevention of domestic violence, and requested a meeting as soon as possible.

In the Zoom meeting a month later, Williams went over what she had found with Mark Speakman, Attorney General and Minister for the Prevention of Domestic Violence, and outlined the obstacles facing women.

But he made no promises, and Williams said she felt he didn’t understand the urgency or gravity of the situation.

Watson then went to the media, and the story was reported on. Within a week, the government produced a statement promising to investigate the issue.

“We’ll all be watching and holding them accountable,” Williams says.

“I will be trying to follow up, I won’t let it go.”

Williams is disheartened that it took media coverage to get the government to respond, but says she’s learnt a valuable lesson.

“Part of the reason I’ve spoken to the media and been vocal about it, is my experience is that when we do things quietly and ask for things politely, the government says there’s no money, despite being one of the wealthiest countries in the world. But when the voting population starts getting angry and asking what’s going on, that’s when we see an answer.

“It’s been a sad realisation for me to recognise that people don’t respond to do the right thing, they respond to winning the vote, so I will keep being as loud as possible in the media.”

Leaving brain injuries undiagnosed has significant consequences, Williams says.

“You’ve got women feeling like they’re a bit crazy, women wondering, ‘Why don’t I remember things, why have I got headaches all the time, why can’t I sleep?’

“It makes women feel worse, like something is wrong with them rather than identifying the underlying cause that we’re completely missing.

“If women are unable to work due to the physical and psychological side effects of a recurrent head injury, they need to be able to apply for NDIS funding (National Disability Insurance Agency). f they don’t know they have a brain injury they will be left to flounder – which is what is happening now.

“The vast majority of doctors don’t know about this. The medical system failing these women.”

There will be a lot to work out as support becomes available, Williams says, as some women could fear that having brain injury diagnosis could interfere with them getting custody of their children.

But, ultimately, change will benefit these women.

“All women deserve to know the truth about what’s happening to them,” she says.

“In some cases, their brain injury will be the final straw. They might think an act of violence isn’t a big deal, but if a doctor says, ‘Look how many times this has happened to you, you could end up long term brain damage’, that might be the final push that makes her take steps to leave. There’s no excuses to justify why these conversations aren’t had.”

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Interview: Inside one of the world’s biggest concussion studies

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Concussion is a huge concern across the US military and in sports. In 2018, 19,000 military personnel were diagnosed with a traumatic brain injury, while college athletes had an average of 10,500 concussions for past five years.

Despite the numbers, many say there’s a lack of research to inform ways that government and industry can best tackle this problem.

In response, the largest prospective concussion study was formed to fill the gaps in understanding, to see what recovery from a concussion looks like in athletes and cadets.

More than 44,000 people have since enrolled in the CARE (concussion assessment, research and education) consortium since its inception in 2014, across 30 universities and four military service academies across the US.

It has so far captured data on more than 4,300 concussions. The study is funded by the National Collegiate Athletic Association (NCAA) and the Department of Defence.

It’s believed that NCAA athletes represent the best model for what happens with concussion in the military.

Researchers involved in the study hope their findings will allow them to predict what happens to people after a concussion; information which can then help inform protocols that could become the standard for universities and the military.

Steve Broglio, associate professor at the University of Michigan’s School of Kinesiology and departments of neurology and physical medicine and rehabilitation, and one of the project’s leaders, says the initial aim was to be able to define the acute history of concussion, and see what happens to people after they have a concussion, establishing both a clinical arm and a research arm.

“In the first days of the project, we enrolled 35,000 civilian athletes and military service cadets to try to understand what was going on,” he says.

“We captured this by understanding their clinical natural history,” such as if they went to the doctor about their symptoms.

“The second arm of the project was to understand what’s going on a biological level, using genetics and biomarkers and advanced imaging, to see if recovery on a biological level reflects the medical level,” Broglio says.

In 2018, the team moved on to the second phase of the project, which was to understand the persistent and long-term effects of concussion.

“We continued to enrol people and we now have 55,000 participants. Each one receives a baseline exam when they enter institutions,” Broglio says.

“The second phase is now starting to get exit data as gradates do another evaluation to see if their concussion has had any effect on their brain functioning.

“In parallel, we’re also reaching out to people who graduated from intuitions, so they can do online evaluations to see if the long-term reflects just after they graduated, and within the first five years of gradation. The goal now is to start tracking people for their whole life to see the trajectory, and to see what percentage of people have issues,” he says.

Thanks to its findings so far, the consortium has participated in setting the concussion policy for the NCA, which outlines how concussions are managed, Broglio says.

So far, CARE has published around 60 papers relating to various findings, and Broglio says some of the consortium’s findings have had more impact than others.

In general, he says, findings that chime with a wider body of research that came to the same conclusions are more likely to help enact changes in policy because they will carry more weight.

“Some of what we’ve found doesn’t match what other people have found, some things have been consistent with other studies. When it matches, we can say, ‘Right, we need to change something’,” he says. This research is unlike any other, he says, partly because of how far-reaching it is.

“We were interested in getting a broad understanding of what’s going on across all cohorts. The very first goal is to understand the natural history of concussions, and the recovery rate of athletes and cadets participating in multiple levels and across different sports and different sexes.

“Prior to the project, most of the literature focused on male contact collision sport athletes, such as American football, maybe ice hockey and lacrosse. We have close to 50 per cent women in the study, across every NCA sport.”

These sports include basketball, baseball, ice hockey, water polo and cross country. The areas with the most reported concussions, according to the NCAA, are women’s soccer, football, ice hockey and wrestling.CARE’s most recent research, which is yet unpublished, shows that there are different recovery rates based on the sport.

“No one has ever shown this,” Broglio says.“There’s almost an identical recovery rate between men and women that hasn’t been found before, and which we didn’t anticipate. It’s largely been recorded that women take longer to recover, but when matched with equivalent sports, men and women’s recovery rates are virtually identical, which is a pretty significant finding.

“We’ve also had a series of papers looking at the cognitive performance of contact athletes relative to non-contact. They perform the same, if not better. This, he says, runs counter to the school of thought that repeated blows to the head causes chronic traumatic encephalopathy, a neurodegenerative disease which causes severe and irreparable brain damage.”

Some of those things are different to what’s been previously reported, which also opens the door for more research and conversation,” he says.

As well as research, the project is also focused on education for athletes, trainers, coaches and families.

Funding for CARE expires in one yea, and the consortium is in the process of submitting for the next five-year cycle.

“We could be around for as short as 12 months, or it could be another five years. Ideally, it would be another 50 years, so we can track participants,” he says.

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“You can’t wallow – you’ve got to get on with it”

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Having experienced a brain haemorrhage five years ago, 52-year-old Jane Hallard from Gloucester has had to rebuild her life. Here, she details her struggle and how she has learned to look to the future with positivity.

In the five years since my brain injury, I’ve had to come to know a whole new me.

While I look the same as I did, I’m far from being the same person.

On that day, back in 2015, when I was helping my son to clean his car, little could I have imagined what lay ahead.

There was nothing unusual about that day, I felt fine, nothing was amiss at all.

Then, without warning, I can only describe the pain as if my head was being hit by a sledge hammer. I had experienced, I later learned, a subarachnoid haemorrhage.

I was rushed to hospital, where I underwent life-saving surgery and then spent the next eight weeks recovering from the ordeal which came out of nowhere, but was to change my life more than I could ever have predicted.

Jane Hallard

The main issues I experienced, and continue to have to overcome on a daily basis, are the impact on my mental health and the brain fatigue.

Both completely unseen by others, they are hugely difficult for me and impact on my life in so many ways.

They are very hard to explain to people – I couldn’t understand what was happening to myself at first, so couldn’t really expect family and friends to.

My children, then aged 22, 21 and 15, were fantastic, and my mum was hugely supportive too – although my husband, who I had only married six weeks before my haemorrhage, decided he couldn’t cope and left.

The emotional impact of that was another big barrier to overcome.

My mental health is up and down and finding ways to manage that has been hard, particularly over the past few weeks during the COVID-19 pandemic.

That did set me back greatly, but I feel like I have picked myself up again now.

Emotions are very difficult to deal with, and I often react to things very differently to how I used to. Furthermore, the brain fatigue has a huge effect.

Often I describe this to people, and they’ll say ‘I get really tired too’, which I appreciate is them trying to understand, but they really don’t.

Whereas a person without a brain injury will go to bed and sleep, during which time their brain recovers, for me, my brain will only recover to perhaps 70 per cent of what it used to.

I often feel I’m starting a day six steps behind everyone else. I generally go to bed at 8pm, as I only have a certain amount of energy to use to get through the day, and while that gives me the best chance of feeling able to face the following day, having such an early bedtime means I have no social life.

I returned to work around eight months after my brain injury, and because I looked fine, people presumed I was back to ‘normal’, little realising I was far from the person they used to work with.

People just don’t understand. I used to print off leaflets about brain injury and its impact and leave them around the office, hoping colleagues would read them and learn a bit more about what I was living with on a daily basis, but people just don’t find time for things like that in their busy lives.

One of the most distressing parts about my whole ordeal was finding out upon discharge from hospital how little support and guidance there is out there.

When I was discharged, I was given a follow-up appointment a few weeks down the line, a couple of leaflets, and that was it.

I was left with a life-changing injury and just released back into my old life and expected to get on with it.

I had no idea what to do or where to go. My children looked online to find information, online forums and local groups for me to attend, so I could find somewhere where people genuinely understood.

My Headway branch in Gloucester was a lifeline for me. In fact, if it wasn’t for them, I don’t know where I’d be. I don’t know whether I’d be here at all.

I still upsets me thinking of people who are in the position now that I was five years ago, not being directed towards Headway or any other kind of support.

I’ve been there and now how that feels, and I strongly believe that needs to change.

Now, generally, I feel in a much better place. I’m all set to start a new job, which is a new challenge for me doing something totally different, and I can’t wait to get started.

I’ve found that you can’t wait for things to get better, and it might not get easier, but you can find ways to deal with it. I do a lot of volunteering work at a local food bank, and that puts things into perspective for me.

You can choose the way you go in life – you can sit around wallowing, or you can get on and make the best of it. That’s the attitude I have learnt to adopt and the one I’m going to live my life by from now on.

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