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Interviews

The light and shade of brain injury recovery

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When comic artist Wallis Eates saw an ad from Headway East London looking for an artist in residence for the charity’s art studio, she knew she had to apply…

Headway’s East London studio provides a place for members, who all have acquired brain injuries, to create artwork.

Eates’ own line of work leading up to this included autobiographical comics, and digital storytelling with prisoners.

“I’d been looking for ways to help others share their stories or collaborate on story-sharing,” she tells NR Times.

Eates applied for the artist in residency, outlining in her application that she’d like to do comics of Headway members and incorporate their work into them. Eates’s application was successful, and she spent six weeks going into the studio three times a week.

“I was allowed to mill about, sit at the desk and ask what they were up to. They’d share their work with me, and I’d tell them about my project,” she says.

“They’d share experiences with me that I’d remember when I was looking at their work online, later, to see how I could combine it all.”

Eates says the experience made her feel inspired, and she came away with a strong feeling of the sense of community she saw in the studio.

“It was such a vibrant atmosphere,” she says. “I knew everyone was managing all kinds of stuff in their lives, stuff connected with their brain injury, and they were coming to the studio and creating incredible pieces of artwork.

“It reminded me of when I was in school when we did art and I wasn’t precious with it, I was doing it for the love of it. That’s what they were doing in the studio.”

The experience made Eates think about the individual and the collective, and she wanted to explore the dynamic between the two via shared experience.

Eates was taken up by Unbound, a publishing platform that supports people to crowdfund the funds to publish books. She’s currently halfway through her crowdfunding, before her finished book, Like an Orange, is published.

She says the name of the book came from several inspirations.

“One of the members I spoke with, who’d fallen down the stairs, said the brain surgeon he worked with said that the head is like an orange. That’s all he told me, but I assume he meant the elasticity, the texture.

“I later spoke to someone else who said the surgeon told her her brain was growing tumours like Saville grows oranges.”

 

Eates didn’t know anything about brain injuries before going into the project – and she’s learnt several lessons she hopes to pass on to readers of Like an Orange.

“I kind of knew brain injuries would affect everyone differently, and I went in with that agenda, ensuring the uniqueness of each member comes through.

“The biggest lesson I learnt was when we went on a daytrip to the Tate museum and I saw how invisible disabilities can be. Some of the members had nothing visible about them that suggested they were having a challenge walking down the road, but I knew they were,” she said.

“That really brought home to me how, when we go out onto the streets, we don’t know who we’ll be sharing that space with, we don’t know what’s going on with anyone who’s around us.”

“One chap kept going in front of the road or walking in front of people. At any time, we could be walking down the street and passing someone with a brain injury.”

Eates was also surprised to see such a positive atmosphere in Headway’s studio.

“Two members said they wouldn’t go back to life before their bran injuries,” she says, “because the lessons they’ve learnt have been more valuable since before then. It was extraordinary – I want to share these things in the book.”

Eates is looking forward to the members seeing their work in the final book.

“Most of them didn’t work autobiographically, they did artwork for the pleasure it, for escapism, focused concentration, and the joy of applying colour,” she says.

“It will be interesting for them to see how their artwork and their stories have inspired others.”

 

 

Interviews

The stroke survivor turned rehab provider

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When Mark Fricker suffered a stroke aged just 32, the lack of access to dedicated rehabilitation inspired him to retrain as a stroke rehab specialist. Here, he shares his inspirational story

Mark Fricker is very matter-of-fact about the impact of his stroke.

I view it as a positive moment in my life,” he says.

“I now help people walk again, which is very rewarding, and I feel I have been given this chance in life to help others.”

Back in 2002, when Mark suffered a devastating stroke while on holiday, the outlook seemed bleak. With nowhere near the access to specialist rehab Mark knew he needed, he resolved to do it himself.

Eighteen years later, Mark is now helping others who are in his very position back in 2002, showing them how possible it is to rebuild your life and achieve your aspirations.

Having gone back to university to retrain, he has become an ARNI stroke rehabilitation specialist, supporting scores of people each year to rediscover new possibilities in their recoveries. 

As the founder of Destination Fit, a studio in Weybridge, Surrey, Mark supports stroke survivors, alongside people with neurological conditions including Parkinson’s and Multiple Sclerosis, on their journey to recovery. He has also established Mark Fricker Neuro Rehab, which extends that specialist support into at-home rehabilitation.

With limited NHS aftercare or resources once a stroke survivor has left hospital, I wanted to offer help to people who were in the same position that I was and to show them with hard work, determination and a commitment to succeed they can progress towards regaining some or all of their lives back,” says Mark.

Mark’s dedication to supporting stroke survivors came from his own experience of recovery, which saw him suffer a major stroke while on a motorbike holiday on July 1, 2002. He was only 32 with an eight-year-old son.

I was with a group of friends on holiday riding our motorcycles back from Germany when I collapsed and passed out,” he recalls.

“I crashed into a friend in front of me and we both fell off at high speed. I dont remember this, in fact, I dont have any memory for around six months prior to the stroke.

I remember waking in a small Belgium hospital with a broken right arm and dislocated shoulder and not being able to move my entire left side of my body, I had blurred vision and could hardly talk.

I was then flown back to the UK and it was only then that we discovered I had had a haemorrhage on the brain.

I spent six weeks in a stroke unit in London before being discharged, still paralysed and unable to walk or use my hands and arms.”

Mark’s realisation that access to specialist rehab was not readily available was devastating, but also inspiring.

The aftercare for stroke survivors then, as it still is now, was a 30-minute physio session once a week for six weeks,” he says.

I attended one of these sessions for the first week, realised that it would be nowhere near enough rehabilitation to get me walking again, and decided I would research stroke rehab and do it myself.

I set myself a long term goal of completing an ironman triathlon within five years. I knew I had a long road ahead of me as I couldnt even stand unaided but was determined I wouldnt stay in a wheelchair at the age of 32.”

Mark set aside six hours each day for his rehabilitation exercises, and refused to be deterred by the fact he could not move his left side.

The first time I was able to pick up a marble was when I knew I would overcome my disability,” remembers Mark.

“I cried with joy and that one action motivated me more than anything else.

I spent the next two years working on my rehabilitation. I could eventually walk with a stick, hold a knife and fork and drink from a cup.”

Mark’s hard-earned recovery then made him realise the desire to help others who faced a similar long and difficult journey ahead.

I decided to retrain and went back to university to study sports science and in 2007, five years after my stroke, I completed an ironman triathlon,” he says.

I also passed the level three personal training qualifications and set up Destination Fit in 2011 to help others become active and healthy. I became an ARNI stroke rehabilitation specialist and am trained in Parkinsons and MS conditions.

“I wanted to give people hope and to prove to them that with determination and support they can achieve their own personal goals”.

In the nine years since Destination Fit has been operating, Mark and his team have helped people of all ages and with a variety of conditions, improving their lives and, importantly, vastly increasing their belief in their own ability.

One client, Issy, suffered a stroke aged only nine and whilst at school. She was left completely paralysed on her right side and with some cognitive issues. Her parents were told she would never walk again, or have the use of her right arm.

She has attended Destination Fit twice a week for 18 months, and her sessions have enabled her to dance, run and rediscover many activities which previously seemed impossible.

Another client, Doug, is 71 years old, and suffered a stroke 15 years ago. He has been working with Mark for two years now, initially to improve his walking. As a result, he was able to walk around his local garden centre – an unthinkable accomplishment prior to his rehabilitation work.

“Having been through this gruelling experience of recovery myself, I am committed to giving people hope and belief they will get through it and can achieve their goals. That is what we are doing with so many clients, who are achieving fantastic results, and what we will continue to support people to do,” adds Mark.

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Interviews

Video: Watch the latest edition of the Curious Case Manager

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Episode six of the Curious Case Manager features Fifth Sense, a charity for people affected by smell and taste disorders.

In this episode Vicki Gilman talks to Duncan Boak, founder of Fifth Sense and Nina Hill, director of development and operations.

They discuss Duncan’s own experience of loss of smell after he suffered from a traumatic brain injury, and how this led him to establish the charity.

Duncan and Nina explain the history and development of the charity and explain how they support individuals with smell and taste disorders through providing information, advice and access to a network of specialist clinicians.

Other topics include the causes of smell and taste disorders, smell training, smell memory and practical strategies to improve the quality of life of sufferers.

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Interviews

‘Lockdown inspired me to run a marathon’

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Having suffered a brain injury which left her struggling to rebuild her life, Helen Whiteley found salvation in running. Here, she tells how she went from running for the first time to completing the Virtual London Marathon in only eight months.

“On November 24, it will be eight years since I suffered a traumatic brain injury (TBI) from a fall at home. I was found unresponsive at the bottom of my staircase at home by my husband Simon; I have no recollection of how I got there.

“I was initially taken to Huddersfield Hospital but once I was stabilised I was transferred to the Leeds General Infirmary neurosurgery department. It was here I was diagnosed with an acute subdural hematoma and fractured skull and was taken immediately into surgery for an emergency craniotomy to evacuate the hematoma. I was then placed in an induced coma on the neurosurgery ICU ward, where I stayed for a number of weeks.

This period was extremely traumatic for my family, especially my daughter Isobelle and son Isaac, who were only 13 and 9 at the time. My family were told that is was unclear as to whether I would regain consciousness once the drugs were withdrawn, and if I did, what permanent physical and mental disabilities I could be faced with for the rest of my life.

Fortunately, I did recover, albeit very slowly, although the brain injury has changed my life and who I am.

Following my accident, I suffered acute anxiety and was unable to leave the house and struggled with my balance needing a stick to help me walk. When I eventually was able to go out, I needed to be accompanied at all times. The simplest things were a struggle due to my lack of self-confidence and awareness of situations; I was taken out regularly by my physio to ensure I was able to cross a road safely.

I found it difficult to interact and communicate with people and was unable to cope in busy or new surroundings. I had, and still have, a very poor memory, struggle with cognitive functions and have lost my sense of smell and have a reduced taste.

I needed coping strategies like lists to ensure simple daily tasks like cleaning my teeth were completed. In February 2014, I suffered a seizure and have been diagnosed with epilepsy which is now controlled by medication.

I know I am not the same person I was before. I have no filter, speak my mind and can be immature, much to the horror of my children. These are all consequences from my brain injury.

Furthermore, I no longer work full time as an accountant for the NHS, as I had to retire due to ill heath, but I now work part time in a library which I do really enjoy.

I have been on a long challenging journey to get to where I am today but I have had the support of my family, my parents, occupational therapy, physiotherapy and the independent living teams.

Running came into the equation in January 2020, when my friend Gill signed me up for the Couch to 5K beginners running program with my local Northowram Pumas Running Club. I found the prospect of taking part in this extremely scary, very challenging and somewhat out of my comfort zone, having never run before.

At the first session I nearly went straight home but the support from the club run leaders was amazing. I progressed slowly on the programme, first running one minute then walking one minute, and slowly increasing this. On March 7, I did my first 5K park run with the Pumas. I was overjoyed that I had achieved this but then lockdown happened and everything changed.

During lockdown, I continued with my running. Through challenges set by our C25K run leader I felt confident to go out and run on my own and eventually I tried running off-road. The running club have been fantastic during lockdown, setting challenges for us to do and I set myself mini challenges, slowly progressing to run 5 miles, 10K, 10 miles, and 2 half marathons.

I had never taken a selfie before I started running, but as I made progress the pictures began to get posted on the running clubs social media. I have totally embraced the running bug and I am amazed by how far I have come in such a short period of time.

Prior to January of this year, I had never run or even thought I could after walking with a stick for the majority of my recovery to help with my balance issues. Running has helped in my recovery by increasing the confidence I have in myself and making me more independent, as well as introducing me to a new social group.

In hindsight, if it hadnt been for lockdown, I wouldnt have continued to run as I have. I would have been unsure of running with groups of different people and would have felt pressured. Lockdown enabled me to build up my running at my own pace with virtual support from the Pumas.

I decided to take on a new challenge and registered to take part in the Virtual London Marathon on October 4, running alongside Gill and Nic from the Pumas and following a route mapped by the running club, finishing in my hometown of Halifax at the historic Piece Hall.

This would be just a month before my 50th birthday, and nearly eight years since my life changing accident – as well as being only 8 months since I put on my first pair of trainers!

I only had one month of proper training prior to the marathon and the furthest I had run to that point was 18 miles, but I was determined to complete it. I committed to raising funds for Headway, as well as for the neurosurgery department at Leeds General Infirmary who cared for me after my accident.

I wanted to give something back, which hopefully in a small way will help support patients and their families at this critical time and to say thank you to the brilliant consultants and nurses who saved my life.

On race day, we set off from the Wraggles in Queensbury at about 8.40am. We had so much support during the run. Cars beeped and total strangers clapped and cheered us on. I was so emotional and absolutely amazed that Id done it and finished it in 05:37:45.

I know how very lucky I have been to recover from my injuries with only minor disabilities, but there are many people who are not as fortunate as I have been in my recovery. What I am doing is for them.”

To support Helen in her fundraising for Headway and the Leeds General Infirmary neurosurgery department, visit https://www.justgiving.com/crowdfunding/helenwhiteley

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