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Finding the Light After a Lifetime of Darkness: Chris Simpson's Story
The Headway Lincolnshire team knows that for some people, the effects, disabilities and lifestyle changes that result from an acquired brain injury (ABI) may appear almost overnight and become obvious to the injured person. However, there is a significant number of people whose ABIs may go undiagnosed for several years, leaving the injured person living with hidden disabilities.
Chris Simpson, 53, from Grantham, has a brain injury and is a Headway Lincolnshire service user and trustee. He shares his story of living with an undiagnosed brain injury for over 40 years with us here:
“I didn’t have the most idyllic family life when growing up, and during the first year of my life I was beaten regularly by my mother,” said Chris. “At the age of nine months I was eventually taken away from my parents when it was discovered in hospital that I had a massive skull fracture. It extended from my right orbit to the occiput, and I also suffered nine rib fractures.
“My mother was given three years’ probation and after a few months I was returned to her care where the violence against me continued; I went through various stays in hospital and children's homes during this time." Continued below...
Continued...“I suffered continuous head strikes and beatings, and I can still remember these which is extremely hard for me at times. My cut lips and black eyes were commonly reported to the social services.
“After yet another of my head injuries was reported to social services, I was removed permanently from my parents’ care.”
Chris then grew up in the care system and recalls his time at school being very difficult as he struggled to learn and retain information.
“Being around other people was difficult,” he said. “I was often called names such as ‘dumb’, ‘daft’ or ‘stupid’ because I struggled to learn, which was very stressful for me. I also discovered that I lose my speech when I get really stressed, and as a result of my difficulty learning, I left school with no formal qualifications at all.”
When Chris began his working life, he noticed that he would often become fatigued and would miss a day’s work just through the necessity to sleep all day. “My sleep pattern problems completely affected my work life, and I had many periods of unemployment as a result. I always knew that there was something was not quite right with my health, but I didn't know exactly what it was.
“Everybody else could learn faster and retain information better than me. I managed to return to college and gain four GCSEs which was extremely hard, but by this time I was in my 40s and stuck in repeating patterns of unemployment.”
It was only when Chris attended a routine eye examination that he began to discover answers about his health. An optician spotted damage in Chris’ left eye, for which he was referred to hospital where it was discovered that the damage was consistent with major trauma.
Soon after, and by chance, Chris watched a documentary on traumatic brain injuries titled ‘Me and My New Brain’ by Charlie Elmore which documented symptoms of ABI such as fatigue, memory loss, mood swings and speech problems; all of which coincided with Chris’ own health problems. He immediately began researching his symptoms and discovered Headway UK and their support group in Grantham, who advised Chris to approach his doctor with a referral from them.
“I went to QMC Hospital in Nottingham where I was diagnosed with PTSD, but the doctor also felt there was much more to my problems. I was referred to the neurology department where my PTSD was confirmed, and it was also discovered that I was living with a serious head injury that dated back to my childhood!
“The doctor said the ABI would not get better; life would continue to be a challenge for me, and I should be helped with disability and sickness benefits as there was no way to reverse such an injury.
“He also said I should be extremely proud of my achievements as it was rare to see these considering I had such a bad level of brain damage. I was really touched by that.
“I left the hospital crying, reflecting on all the times that I had been told that I was stupid or daft or not going to amount to much. All this time I had a head injury and I had only found out by strange twists of fate!”
Since his diagnosis, Chris has continued to live independently and receives regular support from Headway Lincolnshire. He went on to explain the struggle of living with a hidden disability and interacting with others: “You end up having to justify yourself and your symptoms a lot,” he said.
“When you explain that you have a brain injury, people often make comments such as “You look fine to me!” or “When your injury gets better then surely you can go back to work? Or are you lazy?
“It can get extremely frustrating and tiring trying to convince people that you are suffering from a hidden disability and that you may need more time to complete tasks or you may react to situations in different ways to how others would expect,” said Chris.
“I still suffer with things like forgetfulness and will often leave a pan on a hot stove or burn my food because my attention will be elsewhere. I liken this to having ADHD symptoms. My fatigue is still prevalent too, and I find I can get frustrated very quickly and often feel isolated as a result of my injury.
“But despite all this I think I’ve managed to remain very positive about my life, especially since diagnosis; I have a great sense of humour and I feel like I can tune in to other people’s emotions very well too!
“Headway Lincolnshire has been a lifeline; since my diagnosis I have regularly attended Grantham Headway’s support group, and in October 2021 I joined the board of trustees which has been amazing. As someone living with a brain injury, it’s fantastic to get involved in the official work that Headway Lincolnshire conducts and give a voice to those who are suffering from an ABI.
“Through Headway Lincolnshire, I have met so many people along my journey who I can relate to because they have shared similar experiences, and I’m lucky enough to call them friends. Seeing all the people who have helped me, from other service users to volunteers and trustees, always leaves me with a warm sense of hope in humanity.”
Recent statistics from Headway UK have revealed that between 2019 to 2020, there were approximately 977 hospital admissions per day in the UK for acquired brain injuries (ABI), which equates to roughly one every 90 seconds. In the same year, Lincolnshire’s hospitals received a total of 4,262 admissions.
The need for ABI provision and support in Lincolnshire is growing, and Headway Lincolnshire continually works to support and aid those living with an ABI and their families. If you or someone you know may be suffering from a head injury, click here to get in contact with the Headway Lincolnshire team.
A Life Changed in a Split Second: Claire’s Brain Injury Story
It is estimated that there are around 1.4 million people living with a brain injury in the UK, yet many of us will be surprised that this figure is so high. Living with a brain injury, or the neurological side effects of one, is often referred to as a hidden disability. Who knows how many of your friends, colleagues, or people you walk past in the street, are living with the effects of brain injury without the rest of the world knowing? This is Claire Campbell’s story.
On the 31st January 2001, Claire was driving to collect her uniform as a newly qualified nurse when she was involved in a car crash. Her car veered off the road down a 30-foot embankment and she smashed her head against the inside of the car, suffering a traumatic head injury as a result of the impact. Claire’s life changed within a split second; she spent the next five months in hospital and was in a coma for nearly eight weeks. The accident and the resulting brain injury stopped her career – and her life – in its tracks.
Over 20 years on from the car crash, Claire is living with the physical and cognitive side effects of her brain injury. Her mum Marlene is now her full-time carer as Claire has mobility issues and struggles to walk for long periods unaided, and also suffers from slurred and slow speech. Claire mentioned that she can easily become extremely fatigued as her cognitive abilities have been severely impacted, and she often struggles to find her words and communicate with others.
“I call it thinking through treacle,” she said. “And it can often take up to a week to get over; I can get really fatigued and just have to endure it – I can’t get the words out that I want to say.”
As Claire was recovering from her injuries in hospital, she got in touch with Headway Lincolnshire after spotting a poster on the ward promoting their services. Since then, Claire and Marlene have both benefited from the support programmes and contacts available through the charity; Claire continued to make good progress in her rehabilitation and Marlene has been supported in her transition to a full-time carer.
In 2003, the NHS removed Claire as a physio patient; however, Claire and Marlene knew that this was too early to be left without help. They decided to pay for a private physio, Jane Reams, who is also a trustee of Headway Lincolnshire.
“The Headway meetings are really helpful; they’re vastly interactive and we discuss what works for each of our individual situations, having a laugh and a joke about who’s forgotten what recently!” says Claire. “It’s an opportunity to share the sheer frustrations of having a hidden disability with one another.
“Through Headway Lincolnshire I’ve also been able to speak to the nurse ward leaders at the hospital, trying to remind them exactly what a head-injured patient needs,” she added.
Both Claire and Marlene often talk to occupational therapy students from the University of Lincoln in order to help them with their studies and raise awareness of the effects of a brain injury too.
One thing Claire wants to raise awareness of is that brain-injured people often require more time to complete tasks. “I always wear my sunflower lanyard when I’m out and about as a sign that I have a hidden disability,” she said.
“I also have my brain injury identity card from the National Police Chiefs Council which lists the problems I face: speech difficulties, memory loss, limited mobility and fatigue. On a good day I may be able to walk down the road on my own but in the past when people have seen me, I’ve been accused of being drunk because my walking isn’t stable. It’s so frustrating. Brain damage isn’t visible.”
She went on to say: “The closest thing I can liken my head injury to is autism, with a crossover between this and the physical effects of a stroke. It’s similar to Asperger’s where people may be very intelligent but just have difficulty communicating it.
“I have difficulty with sequencing too – for example, if I wanted to bake a cake, it would take me a long time to understand how to get started, which order to do things in and how to get to the finished product.”
Ann-Marie, Coordination and Development Officer at Headway Lincolnshire, said: “What people often forget is that people with brain injuries led fulfilling lives before their injuries, just as Claire was on the way to pick up her nurse uniform and ended up on the very ward that she was going to be working on. It just takes one split second – and your life and the lives of those around you have been changed forever.”
Claire’s mum Marlene now cares for her full time. “My life has completely changed,” said Marlene. “I went from a life where I could do what I wanted, when I wanted, to constantly thinking about Claire, what she needs, whether she’s OK. It’s like having a small child again.
“Sometimes it’s so hard for me to know exactly what Claire is wanting – what she says is not always what she’s thinking and it’s difficult to decipher what it is.”
Claire nodded, adding: “The cognitive problems are definitely the most difficult. You can work around mobility and emotional issues, but thinking becomes very, very hard. What makes that person upset or angry? Why are they feeling angry?”
“As a carer I also have to plan for what’s going to happen to Claire if I can’t look after her anymore,” Marlene said.
Ann-Marie agreed, saying: “That’s another thing Headway can help with. We signpost to relevant organisations such as the county council or Age UK for caring services. We also work with Carers First who are very helpful.”
“Not only that,” Claire added, “But Headway Lincolnshire is absolutely brilliant at organising events like lunches, bowling trips and days out. It’s about becoming social again and speaking to others who have experienced similar problems.
“I also receive activity packs from the team to keep me occupied, with things like crosswords puzzles, wellbeing packs, treats, recipes and seeds to plant. It’s something to look forward to and really helps me focus my brain,” she said, smiling.
So, how can we help those living with brain injuries?
“The main thing I want to say to the rest of the world as a brain injury survivor is that we are here,” Claire emphasised. “We make up a more significant part of the population than anyone realises. All we need is a little bit more time when completing simple tasks like finding our purse or putting up an umbrella.
“In a county like Lincolnshire, which has very few facilities for the head injured, Headway Lincolnshire is absolutely fantastic. There’s a centre point of contact, multiple support groups, Ann-Marie is always available to talk to as well as trustees like Jane too… they’ve been a godsend.
“Take time to be a bit kinder to everyone. We can understand everything that’s going on, but it may just take us that little bit longer to get there.”
"On 14th March 2014 our lives were put into complete disarray when our son Keith was attacked in Newcastle."
He was standing eating a pizza at the time of the attack, he was punched, fell back and hit his head on a stone windowsill and then the pavement. The person responsible pleaded guilty to grievous bodily harm and a drugs charge.
As a family we had no concept of brain injury after spending a week in Newcastle trauma wing Keith was discharged with a note saying GP, Headway, and rest. We thought "who is Headway?". After using Google we found the Lincolnshire contact number. A message was left on the answer machine and within an hour or so Ann-Marie was on the phone arranging a visit. She has been in constant contact ever since face-to-face, text, phone or email. Ann-Marie has been a tremendous support to us all. There was so many questions to be answered, so much concern for Keith. Ann-Marie is a source of strength. We had one which Keith was extremely anxious and worked up about. He had complete faith Ann-Marie would be able to help. He was right, problem solved within minutes. Keith is so indebted for all of the support that he intends to raise funds for Headway. In the summer we had a garden party which Ann-Marie attended. In the future Keith is willing to participate in volunteer work, or any way he can. We all now realise how devastating and life changing head injuries are. Without Ann-Marie we do not know how we would’ve coped with life.
Paul, Christine & Keith
"I would not have made the progress that I have"
Without Headway and Headway Lincolnshire I would not have made the progress that I have after my TBI.
R
"I’m writing to say thank you as a charity and to Ann-Marie Smith."
My life changed on Saturday, the 10th of August 2013 when I had an accident while cycling. I was wearing a cycle helmet, but all I remember of my accident is looking down at my front wheel and then the accident and emergency.
Following four days in hospital I was then referred to my GP who mentioned Headway whilst I was asking him questions about why I had no memory of my accident.
Your website explained to me about the various amnesias, fatigue headaches etc. that I was experiencing. Your website and the leaflets gave me an insight into what had happened and what was happening to me and it helped me enormously. After nine weeks at home and eight weeks working part time I thought I was well on the road to recovery and I kept pushing harder and harder to get through the various issues I was experiencing. After some months I realised that things were not going as I had hoped and I found Ann-Marie.
Ann-Marie listened to me and gave me a better understanding of what I was going through and what help and assistance I could get and referred me for rehabilitation. Following this referral I have been seen by a rehabilitation doctor, and a consultant neuropsychologist who, following tests explain to me what was happening in my brain, moderate severe traumatic brain injury, memory issues et cetera. And what I needed to do to assist my recovery. As a result of this assistance my wife and I took the decision that I should take early retirement to give me time to concentrate on my recovery. I’m also receiving physiotherapy, from Ann-Marie’s referral, to help my balance, dizziness and knee injury. Your website has continued to give me very valuable information and background to help me come to terms with my accident , what has changed in my brain and to except what is required to help my recovery. I recently joined Headway and I’m very grateful that you are there for me, my wife, my family and all the other people who have suffered brain injury and illness. Thank you so much for helping me to look forward again!
Ross
"The hardest thing is learning to realise that you have changed"
The volunteers at Headway Lincolnshire get really involved in helping others who have suffered a Brain Injury and their family and friends. These people all need to be taught what the effects of a TBI (traumatic brain injury) are and how to cope with their loved ones actions / reactions to their development of the change in their personality.It is not easy, there is no easy way to stop a break up in a relationship because of the different people we appear to become. The hardest thing is learning to realise that you have changed, You look the same , you feel the same, you try to be the same BUT you are no longer the same person.
H
"Travelling back from a party late one night with friends, the car Veronica was travelling in lost control and crashed head on into a house, leaving Veronica fighting for her life."
Veronica was in a critical condition following the accident and placed into an induced coma for several days due to the swelling on her brain. Veronica’s family were advised to prepare for the worst in the days that followed.
Fortunately the worst never happened and Veronica spent the next few weeks recovering at Lincoln County Hospital. Veronica had suffered a life changing brain injury from the accident which effected her short term memory, concentration, balance and coordination, initially paralysed down one side of her body. Eventually, Veronica was allowed to go back home with her family and start to re-build her life.
Coming to terms with her long- term brain injury, and seeing her friends turning 18 and starting the next chapter in their lives (university, new careers and general independence) was one of the most difficult times for Veronica as she began to re-build her new life with the support from her friends and family. Whilst this time is some what of a blur for Veronica, she shares memories to this day with her friends and family on the initial months following that fateful night.
Veronica managed to go back to college, just three afternoons per week and qualified as a beautician.
Veronica even went on to become one of the top 10 dealers of Virgin Vie cosmetics in the Country, establishing herself as a Virgin Vie Manager in Lincoln as well working in a variety of other job roles.
Following on from a bad run of luck with her employment in 2011 and the everyday reality of living with a brain injury, Veronica suffered from a spell of depression and was referred for a Brain Injury Rehabilitation appointment. It was at that appointment that Veronica first met Ann- Marie from Headway Lincolnshire.
Whilst Veronica had heard of Headway before and seen flyers and information, she had never engaged with anyone at the charity. She decided to go along to one of their monthly social groups and, since this initial meeting, Veronica has become a true inspiration for the charity, demonstrating how triumph can overcome adversity and how living with a brain injury does not mean you can’t live a ‘normal’ life.
Veronica is now a Trustee for the charity and often talks to others and shares her story on how she copes with and adapted to the many daily challenges she faces.
Veronica will never know if her brain Injury has changed what she could have achieved or the opportunities she could have been dealt in her life, but Veronica has a very positive mental attitude and shares this with other Headway survivors showing them how to make the best of what they have.
Veronica
Headway is there to offer you support
Headway is there to offer you support, hold your hand and guide you through the difficult bits. Nobody in the hospital told us about Headway until we met Ann-Marie when she came onto the ward. She was brilliant and gave us loads of information in the way we could understand.
For a long time afterwards, I was angry and frustrated. I felt like I'd lost 18 months of my life. I had to give up a job I loved, I could no longer drive, and my vision was badly impaired. My memory is still so poor I have to write everything down, and I have problems with my balance which means I can't go anywhere on my own. I also suffer from emotional and psychological issues, such as depression and feelings of helplessness, partly due to a lack of understanding of brain injury among the general public.
Life changed for me when I found Headway Lincolnshire.
Anon
Joining Headway Lincolnshire was a turning point in my life
Joining Headway Lincolnshire was a turning point in my life and it has helped me in so many ways. It enables me to get out and about and meet new people - something I had always enjoyed before the accident.
AGM
"I really don't know what Ray and I would have done without the fantastic support of Ann-Marie and her team."
She is always there to listen and guide you throughout the new journey that life thrust upon you.
Sue L
"The doctors and surgeons saved me but Headway Lincolnshire has made me"
The doctors and surgeons saved me but Headway Lincolnshire has made me who I am today and I am happy with the person I am now because I am lovely."
AGM
"The organisation that helped me to rebuild my life"
I became aware of Headway Lincolnshire in 2003 after I was assaulted and left with a brain injury. After making good progress, I wanted to give something back to the charity that supported my family and me. The charity suggested that I volunteer with them, and I haven’t looked back – it’s a great feeling to give something back to the organisation that helped me to rebuild my life.
As an ex-client of Headway Lincolnshire, volunteering with them seemed like a natural next step in my recovery process. I started as a volunteer in late 2009 with the help of my support worker. Volunteering has given me back a feeling of usefulness, and my confidence has increased – I love helping the members, some of whom are suffering much more than I did. It’s a hugely rewarding role, and I’m always counting my blessings. The training available at Headway Lincolnshire is fantastic, and it’s great that volunteers can participate in this – it makes us feel valued and appreciated. I have also been encouraged to share my personal story. Although personally painful at times, if my account will help someone else, I’m always happy to share it. Being a part of Headway Lincolnshire certainly makes you realise all the things we often take for granted, and it can change your priorities in life. You can’t enjoy anything without your health! The social aspect of Headway Lincolnshire – for members and volunteers – is brilliant too. New members often say how friendly the atmosphere is, and that is nice to hear.” In 2012 I was nominated and won a National Award for Volunteer of the Year. The awards ceremony was fantastic, and James Cracknell, Olympian and Brain Injury survivor presented the award.
Barabra H
"Headway does a remarkable job supporting people & their families with limited funds"
To people who have an acquired injury this charity is a lifeline to them.
DG