In the words of Susan: “The thing we need to help us is community. The thing denied to so many of us is community. My life force just won’t give up. That’s what I do have. Despite it all, eventually, to my insatiable desire to live gets triggered. Thank goodness because otherwise I would not have desperately reached out for help to Headway to help me navigate the atrocious symptoms we can all relate to no matter how our brain injuries occurred. Headway and Diane’s facilitation and the aroha (unconditional love), the Manaaki (kindness to all), and the sharing of purakau (stories) in safety has been a piece of my missing puzzle. One piece of advice that was passed on to me earlier this year, is the boom and bust thing. Being reminded to intentionally and carefully pace tasks to ensure one can make the most of their time and good energy moments of the day without collapsing into acute fatigue states that we know can last for hours, days weeks, months and most cruelly, years”.
A woman in her early 30’s was involved in a car accident four years ago.
She suffered a mild TBI – otherwise known as concussion. She was plagued with constant fatigue, headaches, balance and sensory issues and difficulties processing information. She had built up a successful career as a teacher, but was unable to continue due to on-going symptoms. She lost her home due to financial insecurity and so moved to Tauranga to live with family, but continued to have problems communicating and expressing herself, was irritable and became increasingly isolated and cut off from her family and friends. She is currently homeless and requires assistance to navigate MSD and ACC. Trauma from these experiences makes it difficult for this person to trust services and people. She has disengaged from all medical services.
Young man aged 25. Has suffered a number of concussions due to a fall, an assault and a vehicle accident.
Last incident a 15 kg weight fell on the back of his head while he was exercising. Possibly as a result of the cumulative effects of multiple concussions, this last injury has been the most difficult to overcome in terms of symptoms. He suffers daily head pain, brain fog, balance difficulties and anxiety. ACC have dismissed his claim on the grounds of a family history of migraine.
His symptoms remain unresolved and so he is having to return to work as the sickness benefit is not enough for him to live off and he is fiercely independent. His work is with heavy earth moving machinery and I have concerns regarding his and other peoples safety. An ACC review is in progress, but will take time.
A man in his early 60’s, had worked all his life as a long-distance truck driver. He attended a workplace fare-well one evening when he suffered a brain aneurism which resulted in him falling back and hitting the back of his head on the hard floor.
He spent 4 months in hospital and rehab, then returned to his home where he lives alone. He suffers severe daily head pain, sensory overload in crowds, noisy environments and bright lights, constant and debilitating fatigue and headaches. Became more and more isolated, lost his confidence and sense of who he is. Suffers depression and anxiety and finds the smallest daily jobs take hours to complete – dishes, showers, shopping. Knows that if he pushes himself, his head pain and fatigue only increase. Continues to navigate services and compensation through ACC with the help of Headway.
This is his writing of his experience:
My Impression of my Monster
There is someone or something in my head, but it’s not me.
It makes me confused easily and makes me sleep for far too long.
There is a big black hole in my brain where nothing exists, not even me.
I do as I am told to do by the monster that I don’t know, and when I answer back
The monster immediately strikes back and throws me back into that black hole of nothingness.
He is in control of my eyes, my ears and my hands.
The world is so bright, everything is so loud, every word I write is a mess.
He makes me lazy.
With no incentive to do life, my personality has gone on a holiday, and I can’t get it to come back to work. It makes me so lazy it drives me crazy.
He rules every move I make.
This new enemy leaves me speechless. He robs me of my voice, my power to communicate, my power to be me. He controls my memory, my past, the here and now, the future.
The monster dangles a carrot in front of me and feeds me tit bits of information when it suits him.
I've forgotten what I was going to say. See you soon.
_______________
Highway to Hell
When I woke up in the hospital after this monster floored me, I was empty of all knowledge, understanding or feelings. Now it has been 2 years since the monster came knocking, 2 years of hell. 2 years of trying to catch him, with no success. I have to crawl my way out of the black hole to get through the day, every day.
Nine times out of ten, the monster strikes back instantly and puts me back into nothingness land again. The battle goes on and on and I feel that I never stand a chance of catching him. I keep saying, one day I will catch this f!#&ing monster, but not today.
__________________
Comfortably Numb
When I wake up in the morning, I say to myself – are you going to get out of bed, or should I just stay here so I don’t have to face the monster again. That’s the first battle of the day. I get up finally and sit in my chair, a coffee in one hand and a smoke in the other. I turn the radio on first thing in the morning. Instantly I wander off into nowhere land and stare into the oblivion. All I see is nothing, all I hear is music – my salvation, my only escape from hell. My monster doesn’t like me being at peace, and out of nowhere, I’m kicked back into monster land. The numbness is over, so another day begins, just the same as yesterday. My monster is alive and kicking and he knows what tomorrow is going to bring before I do.
He's a control freak.
By: Anonymous