A Long Journey Home

When I fell on my head in July 2000 I had just registered my own limited company. I had a brilliant career planned and I felt as though I could accomplish anything I set my mind to.

My early story is full of what many would call catastrophe, and it certainly felt that way to me at the time. Before I fell on my head I would have taken everything in my stride but, without the ability to understand, let alone think, I was caught in the storm and it raged for a long, long time.

I was taken to hospital but after being left alone in the waiting area unconscious for four hours I was sent home when I finally came round again. I only know this because it is in my hospital notes. They sent me home to an empty house without even seeing a triage nurse, let alone a doctor. The waiting area and the A&E department were quiet - there was no one else there to my knowledge. First lesson! Don't get 'sick' at a weekend when staff are sparse!

The following morning I was sent back to the hospital by my GP. I was sent up to a ward. A CAT scan was ordered but no one followed this up. My hospital notes are only filled with notes that explain the nurses are too busy with other patients to take my obs...

The ward wasn't particularly busy. I remember at one point I could feel I was about to lapse into unconsciousness again and there were four members of staff stood at the nursing station laughing among themselves...

When I came round I had no idea where I was. I was frightened. I gathered my things together and attempted to make my exit. I was pulled by the arm roughly back to the bed. Nothing was explained to me.

When eventually they tested me against the Glasgow Coma Scale the triage nurse wrote that I was deaf - rather than confused and unresponsive because I couldn't understand what she was talking to me about or asking me to do.

Lesson number two - try and make sure a relative or friend ensures that you are getting proper treatment.

I did see a doctor, I don't believe he was a neurologist but he did write down that I had a severe brain injury. He wrote to my doctor saying that my case should be followed up. I knew nothing of this and nothing was actually done - so - like thousands of others, totally contrary to the NICE guidelines, I fell through the net.

I went to the doctor on a very regular basis 'complaining' about headaches, nausea, memory problems and so on. I did this for five years before anyone took any notice.

During that time I was nothing more than an ego on auto-pilot. I was like a four-year old child oblivious to the world around me.

No one told me not to drive - but that is another story. I had BUPA insurance, but there was no one to instigate this and I certainly was incapable of remembering or knowing what to do.

I was also covered by private insurance that would have paid me my full salary - but again - there was no one to take care of this...

Over the next six years my estranged husband (we were estranged at the time of my TBI) manipulated me methodically - even to the extent that he filled in totally false details of who I was and made me believe that I was the worlds worst person. I can see clearly from the journals that I kept that he was taking advantage of my total loss of self awareness and total loss of experiential memory. The only way I could explain these loses to my doctor was to continually say that I 'have no sayings.'

My estranged husband drove me to a suicide attempt - he would have inherited every penny I had. As it was he bled me financially dry over the next nine years by manipulating me... I was totally vulnerable. No one saw this. At the eventual divorce the judge simply said - legally you were still married - legally he was able to take what he wanted...

I knew the 'fact' that I had a severe TBI but I didn't have a clue that this meant 'my' brain was injured or that it affected my abilities. That took over six years to start to understand and this understanding only came because, in year five, after persistently appearing at the doctors since my fall, I was eventually referred to a neuropsychologist and from there to an occupational therapist.

It has been a long walk home. It has taken a long time with a lot of determined effort to get where I am. I think it is impossible to recover from this extent of injury until you realise that you need to know what is broken in the brain so that you can start to use the mind to begin fixing it... Until this happens, I believe we all remain vulnerable...

I am 'me' again - as in I have restored my beliefs and am able to once again refer to these as a genuine part of me through my daily activities and life.

I still struggle cognitively and still struggle with understanding instructions and memory. I tried to go back to work. Not as an executive with the ability to command a six figure salary, but as a cleaner on minimum wage. I got sacked over and again because I couldn't understand instructions and because I was so slow to learn...

It has indeed been a bumpy ride, but I have gleaned so much from this experience. On a 'spiritual' level I wouldn't change a thing. Even on a conscious level I am not sure that I would given that I know now exactly how strong I am, and exactly what I am capable of because of this experience.

I was always strong in heart and mind before, but this really was a 'gift' that I thought everyone had. Now I understand what it is like to struggle and to live without this gift - that is a blessing because I have been able to help thousands of others over the last seven years to find their own way home...

(If anyone knows Jan Little - I am trying to connect with her on here...)

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  • Well, you certainly went through it and it doesn't sound as if you have had enough support over the years. It means that you had to really dig deep inside yourself for the strength you maybe didn't even know you had. I had my ABI in 2001 and yes, I think that doctors were less tuned in to brain injury than they are now- it is totally valid and every bit as paralysing and debilitating as a physical one. Good for you for pulling yourself up and out into the light. They don't tell you how long it will take, how slow and arduous it is, how folk won't understand why your tastes in music, food, everything / might have changed. You have had a BRAIN INJURY and the brain is the Id, it is what makes us - us. My old life collapsed too - divorce, bringing up 2 kids alone and with support at first from various medical folk which drops off after a while once you are deemed to be 'cured' you don't recover from a brain injury in that way - you just learn to deal with the new reality. Yes, I have lost jobs too, for forgetting what I had been told - their loss, we need to tell ourselves. Now it is a long way down the road, I am in a not too stressful job and muddling along- head just about above the water and still just about managing. The kids have done well and one is about to go to a good Uni and launch her life so it is time to focus on me. Have a summer gig to see my favourite singer coming up and am dipping my toe cautiously into dating again. Life goes on. No matter where you are on the BI journey - keep the faith X

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