"Traumatic brain injury is the most misunderstood, misdiagnosed, underfunded public health problem our nation faces."

— Susan Connors, president of the Brain Injury Association of America


I Wanted My Brain Back

This great survivor story by Sherri Dalphonse is worth a read: I Wanted My Brain Back

Is reading difficult? Listen to the story here.


Brain Tumour Survivor Story by Anonymous

I had a brain tumour at 14 and my first 5 years after the tumour were troublesome because I had to face the embarrassment of being the lowest grade in my class when I used to be the smartest. I also had a lot of worry and tiredness from trying to graduate high school and get into university after my brain injury but I got into the best school in the country and over a 6 year period I went from Ds to straight A’s, once getting 27% above the class average while taking 4 classes in one semester.

That does not mean I'm not disabled, when I decided I wanted to write a book after graduation, it took me 16 months to decide on a book idea and I went through 400 ideas during the process. In high school, when I wrote essays I would spend four hours or more on the first 5 sentences of my essay because I could not decide what to say or how to phrase it. In art class, I would spend 2 weeks trying to come up with a creative strategy for my art assignment while others began their art work within 10 minutes after it was assigned and when I was in high school and renting movies from blockbuster, I would spend between 20-30 minutes trying to decide on a movie to rent from the store which was unnecessary because we lived five minutes away and could afford many movies since my parents were both elite engineers. I know my brain injury affects my ability to make decisions but I know I can improve with effort.

In my last year of undergraduate studies, I wrote a 30 page essay in 3 days and got a 95% on it from a professor who used to hate me, and in high school I would spend 4 hours writing 5 sentences and then received D’s on my paper from teachers who liked me a lot. All my teachers liked me in high school but they rarely boosted my grade for it.


Surviving Chronic Pain by C.S.

On 5 August 2015 at about 6:15pm my life changed. Cycling along a main road at about 40kmh, a driver who didn’t see me pulled out of a carpark and into the road. I “T-boned” into the car as the distance was less than 14m, about the same distance as the thinking time; so I got the “f” out of the first word that came into my head as my bike hit the car door and I was tipped head first into the roof where I was knocked out. When you apply the physics, my body was the equivalent of 1.5t to 2t, similar to a fall from a 3 or 4 storey building.

I came to probably 6-15 minutes later. People were holding my head and the first words I heard were “is that spinal fluid coming out of his ears or sweat”. I couldn’t move, literally. My body was paralysed and I could not move. I was rushed to ER, covered in blood and so scared I suffered many panic attacks. At ER the team were in full swing, some of my hand movements had started, but it was like a newborn foal. The doctors undertook rectal exams to assess for paralysis, sent me for x-rays and all sorts of scans. Over the course to the next 6-12 hours my body started to slowly work again, it was like a reboot had occurred. I was discharged from hospital and told to see a GP in 5 days if I was still in pain.

After an incident like this, you are in deep shock. You consider what could have been and re-prioritise your life. 5 days later I went to the GP to get help with pain and lack of sleep. I was referred for extensive chiro, physio and massage. I took about a month off work but was advised if I could try to be as active as possible and return to my life then I had a better chance of recovery. I was having either physio, chiro, massage sessions daily. The pain from those sessions was exhausting. The pain and headaches during the day were crippling. But, I thought how lucky I was and assumed I would soon be back to normal and I could put this all behind me. I tried to do normal things: like play with the kids, but after any activity I was exhausted and in high pain. I recall the last activity being a play on a baseball diamond and some rough and tumble. Afterwards, I lay down and crashed. I knew this was not like anything I had experienced before.

After about 2-3 months the depression set in. I seemed to have plateaued in my recovery. And where I was, was not a place I could cope with. I drank too much as that gave me temporary relief and could get me to sleep, but when I awoke the pain was so high and a cycle of destruction started. I went for therapy to help get me to sleep and deal with the PTSD from the experience. I could not cope with loud noises, unexpected touches created hypersensitive responses, the headaches and pains remained crippling and I went through sleep crash cycles.

I went for MRIs, I went for electric shock tests, I went to pain specialists, I went to sleep clinics. The diagnosis: I had suffered type 2 brain damage. Not mild, not severe. Somewhere between. There were no bones touching nerves, this was all brain damage related pain.

At around 6 months the whole anger and grieving process started. That took me about a year. It is now very difficult to explain to someone not in chronic pain, what it is like. If you have always gotten better, you think it will get better or is getting better with time. Also, people try and fix you and recommend their doctor, physio, magic healer or whatever. Trying not to shout at these people is a challenge, they think they are trying to help. You hear – it’s a marathon and other analogies that all imply this ends. My new life was in a body of pain, that felt like the tank was running empty all the time and was nowhere like what I had been. I looked the same, but I was totally different. And not a good different. I didn’t like the grumpy, angry, short tempered me. I was an a-hole. I would not let the accident define me, not let it win.

After about 18 months I started to make changes to my new life. I changed jobs, to a less demanding and more local employer. I was trying to “pace” to manage peaks and troughs, I was having chronic pain medication, nerve blockers, having nerves in my spine “killed off”, all the while trying to not let the accident define me, not let it win. More bouts of depression as I realized I was screwed. The accident had won. I was losing it. I finally succumbed and had some help in the home. That service stopped after about 3 months as it was 2 years from the accident and the insurance company pulled the plug. So, just as I was starting to come to terms with living with chronic pain, the insurance company gets to stop the services I now know I needed. They sent me for extra testing and said the physio, chiro, massage benefit no longer gave a value – so they stopped that too. I lost my shit.

The court case came. No longer was the driver sorry, as she had been crying at the scene of the accident when she thought she had killed me – that lady was replaced with a remorseless woman who explained to the court the accident was my fault. The evidence didn’t stack up, she forgot about statements she had made to the police, and she was convicted. It was an accident, but she no longer accepted that. My therapist advised me that this can happen when someone nearly kills another person by accident. The person creates a different account that makes them not to blame, as the thought of being too blame is too much. It’s either that, or she is heartless. Depending on the day and my level of pain, I flick between the two.

Let me fast forward now. It’s been 3 and a half years. I take pain killers every day. I need pain killers to get to sleep along with pain killers to wake me up. I take anti-depressants, I have weekly nerve blocking, I have Botox every few months, I have therapy every 6 weeks. I am less of an a-hole, but still one. I am lucky, my marriage survived. My wife is married to a different person, but I am living in the body of a different person, so we have something in common.

I am not the person I wanted to be, not the dad I wanted to be, not the husband I wanted to be. When people say it’s like a marathon, they assume this ends - It never ends. It is exhausting and can crush you at any given moment. Your moods can swing without warning.

This is like swimming an endless sea. If you stop, you drown. You are exhausted and some days you swallow a lot of water.

When you do something, when you achieve a goal, you have to live with people thinking you are now “better”. Then living with the crash as they realise you are not better, you just did something and now you are exhausted again and full of pain. This in itself is exhausting.

I live in fear of growing old. Of having this pain on top of being old. I have lost a lot of joy from the world, what used to make me happy no longer does. I do things as part of my rehabilitation – to show I have not been totally defeated. I set myself goals that used to be things I could easily do. I sometimes daydream of escaping this pain, but I have my rafts that I can cling to in this endless sea I am swimming. These rafts get buffeted by the storm and I destroy them. I have my children say things like “I miss my dad” when they try and explain the impact to them. They say that in front of me. That’s messed up, but I miss me, so I get it.

I practice meditation, I try to seek some sort of enlightenment. I try not to lose my temper with people trying to “fix me” or say they think it must get better at some time. I try to be a better man. But all this trying with all this pain is so exhausting, if only I could rest, but I can’t – I need to keep swimming, I need to not drown in this, I need this to end, but it won’t. This is the cycle of survival, it doesn’t end, it’s a constant swim –constant regret, constant anger, constant sadness, constant trying, constant pain and suffering. Surviving this is hard, it’s just plain hard.


How I Survived a Brain Injury

Dianne's story of her brain injury and daily battles. Read: How I Survived a Brain Injury


Unmasking Brain Injury

There is a worldwide initiative called "unmasking brain injury". Brain injury survivors try to paint/style a mask that depicts what they are going through. Then they write an explanation to go along with it. Once a year there will be an event where everyone at the same time wears and then takes off their masks. The masks are then displayed in a public space. The Unmasking Brain Injury website shows past masks and the stories that go along with them.


Chéri Ballinger, former model/actress and now film producer and entrepreneur, suffered a severe Traumatic Brain Injury in 2014...

Chéri's recovery was full of challenges related to having female-specific symptoms. Read: Chéri's story of suffering a severe Traumatic Brain Injury



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