I am a traumatic brain injury survivor and I'd like to share my story.

In September 1997, aged 17, I lost control of the car I was driving and hit a wall. I was in a coma for five days, and was discharged from hospital two and a half months later.

I have gone through all of my adult life since the accident oftentimes depressed. I have a degree from Anglia Polytechnic, and did a Master's degree in Spain. Towards the end, the Master's really stressed me out, and I needed to be on heavy tranquilizers to get through it. Beyond the obvious loss of motor-skills, co-ordination and balance required to play sport, I never really understood why I felt this way until now. For this reason I say I have been "intuitively depressed".

It is only just dawning on me how the car crash and brain injury turned that 17-year-old's future prospects on their head.

Today I am 36. I realize now how some things can be explained by my brain injury: the outbursts of temper when I am unable to find the words to explain something, or the self-induced pressure I feel when describing an achievement which does not align with my high expectations.

I lead an isolated existence. I am driven to achieve but find socializing hard. This is also due to the awful skin condition I have. My atopic eczema, which I suffered from as a baby, resurfaced in Ecuador in 2008 and it has been chronic ever since. I am coming home from Argentina in December because it is unbearable in this climate.

I feel I never mourned the person fate denied me from becoming. I think back to times in the past when I have been unable to work out simple maps, frequently getting lost, and it is all explainable. I think of times when I have been unable to be with my friends, how completely overwhelmed I have felt just being with people, and how jealous and left-behind I feel when I see others. Why didn't I understand this before?

I found it very interesting to read the stories of other survivors of brain injury. I could relate to so much of their experiences. At the same time, this aroused some painful memories and a sense of nostalgia, and could arguably be counter-productive in the sense of wallowing in past self-pity and not living in the present. But these are important human experiences.

While I have faith in the wisdom of the universe, I feel I have much unfulfilled potential, feelings which are probably linked to my fragile health. I crave an outlet to express this.

I know there have frequently been occasions when I have been totally incapable of representing myself, because I didn't understand my needs and condition. This ignorance has had obvious and sometimes painful ramifications for my friends and family.

After years of turning an ignorant eye to my mental health, I hope to gain a better understanding of my present situation and to come to terms with who I am.

I am optimistic about finding happiness. The trouble is, I'm impatient.

In 1996 I was a student at university doing all the things that students are supposed to do: staying up too late, getting behind with my coursework and, more significantly, thinking about the future and what I was going to do when I graduated.

All my plans were derailed when, in my final term, I was hit by a car. I suffered ‘catastrophic injuries’ including a TBI. That evening, when my parents arrived at the hospital, they were told there were three equally probably outcomes to my brain injury: the first was that I would die; the second that I would be left in a persistent vegetative state and the third; that I would recover and that recovery would take about two years. I was extremely fortunate and emerged from the coma just 48 hours later. I have no memory of the week before the accident nor a week and a half after the accident- although my family and friends tell me stories of the funny things I said during that time when I didn’t really know who I was or why I was in hospital.

Initially after the accident I was overwhelmingly tired all the time and so only worked part-time on a voluntary basis. After 18 months, and through the involvement of Headway, I was offered rehab and this enabled me to work around the effects of fatigue and to understand the brain injury and how I could care for myself.

A big change for me was how my faith developed through the experience of brain injury. After the accident I had a profound sense of the presence of an infinitely loving God. This, and other experiences, ultimately led me to put myself forward to become a priest in the Church of England. Whilst it was discerned I had a call to ordination the church as an institution felt my brain injury disqualified me because I represented a ‘pension risk’. Finally, after a lot of debate within the church, I had medicals with a neurologist and an occupational health consultant, both of whom saw no bar to me becoming a priest. I was able to begin training in 2002 which involved reading for a degree in Theology and Religious Studies at Cambridge University. I surprised everyone by gaining a 2i which, given the cognitive deficits arising from the brain injury, was no small achievement.

I have now been ordained for 10 years. Whilst I love being a priest, I still struggle with mental and physical fatigue. Partly for this reason I have decided to work on a part-time basis. Because some within the church hierarchy have taken a dismissive or even irrational view of brain injury, I have always felt a need to ‘prove myself’; now I feel a greater need to ‘be myself’, with all the frailties and strengths which arise from my brain injury.

When I consider who I am now I am undoubtedly different to who I was before the accident; I believe I am more resilient, determined and outgoing. Whilst I lost my senses of smell and taste my other senses have been awakened and I treasure the fragility and beauty of life in a way I never had before. For me, the attitude of others towards my invisible disability has been more damaging to my sense of self than the brain injury. Positively however, it means I have a strong desire to raise awareness and educate people about TBI and to lessen the prejudice that survivors can face.

I knew the path my life would follow. At four years old I taught myself to read, and my life became that of an aspiring wordsmith. I tested into programs for gifted and talented students; as a National Merit Scholar and an Honor Role student I was guaranteed admission to prestigious colleges. Words and language and the love of wordplay shaped a life structured around books and writing and storytelling. Resolutely I worked during the day as a clerk at my neighborhood library, a job I had held since I was 16. I put myself through college courses at night, my eye focused on composition and literature. I knew I was meant to write, and I knew that my agile mind and my knack for memorable phrases was the gift that put me on that road.

The car accident that diverted me happened on January 6, 1997. I woke up in a hospital on February 4, 1997. I wasn’t scared or confused—I was tired. I looked dispassionately at the tree outside my window, yellow in the sunlight, and then went back to sleep. I was released on Valentine’s Day, and my younger brother drove me home. My goals were minor, but some part of me knew where my heart’s blood was: I wanted to stay awake for four hours at a time, and I wanted, with a left hand that had been broken, to type with two hands.

An injured brain will heal in its own time, and for weeks I struggled with the most basic tasks. I was moved in to my brother’s bedroom downstairs, down the hall from my parents’ room, so that my father could give me my medicine at night. When I was asked what I wanted on my pizza, I had to ask my mom if I liked mushrooms. I repeatedly asked my best friend why she couldn’t come see me for the afternoon, in San Diego, from her college in Chicago. I was abruptly reminded that my grandmother had died five months earlier by a misplaced comment from a friend. I avoided my beloved books and journals, because the words confused me. I knew each individual word, but together instead of their beautiful music they played static to my brain. Confused, I didn’t realize what that meant until a few weeks passed and my brain healed enough to comprehend the damage.

By two months out of the hospital I was strong enough to climb the stairs to my bedroom. It was a bright April day, in a room with a high ceiling and an unshielded south-facing window. My current journal was on my bedside table, with part of the collection of pens I always had within arm’s reach. I laid down on my bed and flipped to the next clear page, pen in hand. This was the first time I had tried to write since the accident four months earlier, the first time I had tried to string my beloved words together. I still remember, without looking, what I wrote that day.

“Anything but my brain. Anything but my brain. I would have given my arm. Anything but my brain.”

My name is Giles Hudson. My life became a continuous rehabilitation experience following my life threatening head injury 30 years ago. Visibly there is no evidence of the injury I sustained and the daily challenges I face. Almost every day is a big challenge and when it isn’t, I am worrying for my future.

The majority of the symptoms related to my brain injuries were/are invisible – many of my skills and abilities that come under the umbrella of ‘executive functions’ are damaged and compromised. These include problem-solving, self-awareness, decision-making and concentration. It is through my inner determination, that I have developed coping strategies to progress and overcome these daily challenges that life now presents. Also through my personal rehabilitation, which consisted of the dedicated support, patience and encouragement of my parents, I have made a level of recovery beyond the expectation of the medical professionals.

Daily I am learning how to best live my life with the sometimes unpredictable restraints left by my injury. I endeavour to enjoy the abilities I still have, but I find it very difficult to accept what I can’t do. I approach all of life’s challenges with the mindset - ‘Not WHETHER I can do something, but HOW I will do it’. My life is focussed on being recognised for the skills and abilities I have, not to be disregarded and identified by the head injury and the skills and abilities I have lost.

I want my achievements to be an inspiration for those affected by the trauma of brain damage. I believe everyone should have the opportunity to be all they are able to be.

Despite all optimism and my positive attitude, my battle to get my abilities seen and recognised goes on. I want to experience again the feeling of being a valued member of society – I am still fighting for my future – but life is never straight forward.

Who were you before?

I was a college student with a part time job who didn't have goals. I wasn't sure about my purpose in life.
What happened to you?

Two years ago I had encephalitis. Encephalitis is a rare but potentially life-threatening inflammation of the brain caused by a virus. I was hospitalised for ten days; I don't remember those days at all. Doctors didn't know if I was going to survive; be able to walk or talk. My husband and friends said that I was hallucinating, talking things that did make sense. I had all type of labs, diagnostic exams, a spinal tab and I don't remember at all. I kinda remember when I was discharged from the hospital I was lost I didn't know what had happened to me.

And people couldn't explain me. I felt different, like a new person. Things weren't the same but it was just me who wasn't the same person as before.

After my hospitalisation I became depressed because I didn't know how to walk or communicate. I was trying to understand what was going on in my life. I visited a psychologist who helped me a lot; he was the person who helped me understand what had just happened to me. I remember him telling me: you are going through some grief; you lost someone that's why you feel all confused. I told him that I didn't know what he was talking about because I don't have a death in my family, and all I remember are these exact words: the person who you were before died in that hospital, now you are a new person.

This was like some shocking news for me because it made me think and realise that his words made sense, because I wasn't the person who I was before standing up from that hospital bed. Everything clicked in that moment - I understood why I was feeling like a new person. After that visit I went to my family doctor which I ended up changing because he couldn't understand me, and I went to a neurologist who ordered an MRI and EEG test.

Since results were normal he sent me back to work two months after my brain injury. Returning to work was a hassle because I couldn't remember anything. After struggling and arguing with doctors they referred to get a neuropsychologist for an evaluation. Of course my neuropsychological result came back extremely low so I was referred to get cognitive therapy, OT, PT and speech therapy. I went to therapies five days a week for six months. In this place I met people from different social status’, races and countries. We were all there because we had some type of brain injury. All these made me understand my purpose in life. To help others and never give up on my goals.

Who are you now?

I'm not the me I remember, I'm a survivor. I'm a totally different person with goals in life. A college student who's planning to graduate next year. I volunteer at a local non-profit organisation; assisting low income families with disabled kids. I have set my goal in life to help people with some type of disability specially those who have had a brain injury, because I was in their shoes a couple of years ago. I want to advocate for them and show them that life gives obstacles to strong people like me.

Everything has a solution except death. If you can't do it, try it until you get it. Every single day I thank God for giving me a second chance.

I want to thank my husband, my friends, family and my little dog Max. Thanks to them I'm here today enjoying every minute of my life.

I have two “I used to be’s”. One before Boris the brain cavenoma decided to make an appearance after a flight to Turkey in Oct 2013 and one when Lemmy the ADEM Lesion decided to join him in my head last November.

My mind-set has now changed somewhat from the “I used to be amazing and now I am not” – six months of being stuck in bed with only “The Boys” for company, being unable to see, walk, speak or do pretty much anything leaves time for reflection.

I spent fifteen years of my life at sea on cruise ships, (being the only girl ever to do my job) have been Operations Manager for the Natural History Museum and, after Boris, changed to running six theatres in the West End. We moved to be by the sea and I joined the ranks of commuters.

Lemmy floored me, far more than the first disease, I had to give up work, my driving licence, my social life and lost friends along the way.

Almost a year on, Lemmy has stabilised, I have a new part time job back in theatre locally and they know all about my brain lodgers. I do pilates and have applied for my licence back. I am finding new people locally to get to know and feel this is my first year in my new home as I missed most of the last one.

I am a fighter, I have always been one and now I fight even more just to be what is perceived as “normal”. I use the words “whatdoyoucallit" and "thingy” a lot more.

Having a cavenoma and ADEM, I am also - so far – unique. I am still amazing - Boris and Lemmy think so too.

Before all of this I was living a normal life. I was 29, happy, in a long term relationship looking for my first home. I was in a stable job and studying part time.

One day I felt like I was getting a cold but can then remember nothing until I woke up in hospital a month later. That night I began having seizures in my sleep. Despite medication, Doctors could not control them so I was placed into a coma. After every test possible, I was diagnosed with encephalitis and I was finally allowed home after a month in hospital. I spent a month in a specialist neurologist rehabilitation unit undergoing physiotherapy, occupational therapy, workplace visits etc.

Now two years later on the surface I look back to ‘normal’. That isn’t the case though; encephalitis has changed me and my life completely and the scarring on my brain has left me with many side effects.

I now have epilepsy and despite working my way through five different medications so far, my seizures are not under control. I don’t have any warning signs so have collapsed at home, in the car, on the tube, in the street...pretty much everywhere.

I have severe problems with my memory. People tell me I think that things are worse than they are but I’m not. I forget conversations the second they have happened. I don’t know what I’ve done or where I’ve been. I get lost on journeys I’ve done a million times before. I’ve completely lost the six months before I got ill. It’s a horrible feeling to see photos of yourself, or talk to people, when you can’t remember any of it and have no idea what they are talking about.

The fatigue is unbearable. I think back to all of the times in my life when I moaned about being tired....I had no idea what being tired actually was.

I am no longer the same person. I am tired all of the time. I can’t think clearly. I can’t remember my own life. I am not able to do the job I’ve been doing for years. It’s frustrating and upsetting. I feel vulnerable, overwhelmed and like the odd one out. I feel like it’s taken it over my life, I’m never not thinking about it. I worry about the impact on my boyfriend and family.

There have been some positives though. It has made me readdress my life and think about what is really important to me; I don’t have the time or energy to waste on anything else. It’s definitely shown me who my true friends are and who I can rely on.

I am a very different person to the one I was two years ago but I think I’ve managed well. I’ve bought a house with my boyfriend, I’m back at work and university. I’ve had to make a lot of changes but I think I am coping well considering everything I’ve been through!

My name is Peter. I live in San Francisco, California, USA. I love computers and music, and my wonderful family.

Just the other day, I was trying to explain to my children what I hoped for in life going forward with an injury like mine. I said, "I cant go back in time, but these are some ideas I have had about how to derive happiness for all of us going forward." They immediately responded about time machines and possibilities and dangers.

For me, it was an important lesson on many levels. The ones I take note of here involve the struggles I have moving past this injury and the realization that others are deeply and forever impacted by my injury as much as I am.

I was helping a neighbor move a hardwood dresser from our house to his. I remember nothing of the fall on to concrete, on my head. The dresser didn't make it. I did, but not in the same state I was in before the accident.

Many people say it was luck or the act of a deity that I survived. I dont agree. I believe it was the numerous acts by the medical community, and the wonderful family visiting me so often that made me want to come back to what I am now. While what I am now is far from perfect, it is not in a care home or a coffin.

While thinking in this way may be morbid, it seems to help me through the days where I feel worst about myself. Others gave their all to keep me here. The least I could do is try to give them a result which justifies their hard work and sacrifices.

Who am I now? I dont know that I ever will have an answer to that, or that I ever did. It has been a struggle for me to accept that some of the injuries I sustained are permanent, and to try to focus on doing what I can with what I have now.

Perhaps this is something all people who have medical catastrophe face, and I just missed it before. This injury has taught me to be more understanding of others, and has started show a glimmer of understanding for my own injuries.

For me, it is very easy to be critical of what I can't do, or what I could do better. I think what this causes me to do is not try things.

Walk to the store and buy groceries? If I can't do it right and quickly, I don't want to do it at all. That kind of thinking has turned out to be very limiting for me, and not helpful.

Instead, I have been trying to focus on what I can do, and adjust my life to it. That is easy to write, and hard to do.

I used to love to cook. I still do but am hindered by a loss of taste and smell, being slower, and the loss of use of my dominant hand. This has caused me to do mental acrobatics.

How do you do something you loved when you cant use a knife, can't taste what you are making accurately, and can't move as fast as you once could?

I thought the answer was to somehow "get better", or that I was being lazy. It isn't. The answer is to adapt and try to move forward. For me, accepting that this is a new life has been difficult to approach.

The answer in the kitchen is to cook things more forgiving of lapses in speed, and ask someone who can taste to help you spice. And a food processor reduces much of the labor I thought nothing of before.

I have spent so much of the last years approaching this injury as needing to recover, and not enough time approaching it as a question about what comes next. This has caused me to focus more on the past and less on the future, which I don't believe to be useful or healthy.

Maybe I am a slow learner, but that has been my journey.

An open letter to those dealing with acquired brain injury

It was April 2014, I was a frantically busy 48-year old Land Rover technician; mountaineering and scenery junkie; ex-martial artist; eternal student; husband; father; brother; son etc.

I say I was, because I didn't count on an arterial dissection in my spinal cord depriving my brain stem of its juice and reconfiguring a different self. So now I appear like a drunken jaywalker; stairs are a challenge, I can manage that Japanese art, origami.

After intensive care, I heard that word "hope" all too frequently. Just a step up from wishful thinking, to my mind. I wished I hadn't survived. I could barely move, see, speak or even swallow my saliva.

Nevertheless, the nightmare became reality, reality begat acceptance, acceptance begat determination...

Five weeks later I made the overwhelming transition from that Pythonesque environment to the major anxiety of hearth, home and humble-pie. Nothing had changed, apart from everything!

I had never asked for help before, but fortunately it came. The Stroke Association referred me to Conductive Education - learning how to move properly, or training the brain to rewire itself.

The classes have finished but I am still distance learning.

I was still feeling like a patient when I was referred to Momentum Skills. That's when the self discovery journey really began. Things started to make sense, I started to make sense and understand all the WHY's - well some of them. Training in basic/life skills, cognitive sessions. Psycho babble? No! My advice: engage with all of it. Be honest with and about yourself. No reason to compare, everyone has their ABI, but it's your journey, so snatch back all that you can and make a new, better self.

Alas, you'll have to let go of "the comfort blanket" eventually, so accept the mutability of life and rejoice in the coming tomorrows.

In October 2014 I returned to my studies with the Open University. I was offered a degree in June 2015, but I didn't want to settle for that, so I am continuing for Honours sake. Maybe even a Masters. I recently completed an Award in Education and Training , and NVQ Assessors Award.

I am now working as an Academic Support Worker at the University of Birmingham; a voluntary ICT buddy at my local library as well as a voluntary support worker with the Stroke Association.

So now I am happily busy, not in aesthetic existence, but in instrumental living. But remember - cliche alert - no person is an island, you may have survived a brain injury but everyone who is really in your life during and since that time has suffered from your situation. Repay all their love and kindness with self-determination and empathy - you can't do it alone.

You owe it to yourself and others.

Good luck, may the force be with you.