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The New MeWriting by people with Acquired Brain Injury

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Introduction

The poems and pieces in this e-book were created by members of the Headway peer support “Harbour” group in Summer 2010.

Each group member created a piece to reflect their own experienceas an “insider” with an acquired brain injury.© Headway, 2010

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Contents

I Can Still 4

A Positive Note 6

Brain Breaks 8

Baby Steps 11

What Happened Me? 12

Recovery 14

ABI Experience 16

I Used To Be Someone Else 18

My New Journey 20

The Harbour Group July 2010 22

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I Can StillBy Aidan Scully

I may not be able to ride a bike

I may not be able to play football

I may not be able to use my right hand or arm

But look at all of the things I am still able to do

I can still see

I can still talk

I can still walk

I can still eat

I can still drink

I can still think

I can still drive

Which far outweigh the things I cannot do.

Thank God

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About the AuthorAidan is 50 years old and had a brain injury 36 years ago as a result of atraffic accident. He spent a number of years in rehabilitation and has been attending Headway services for 2 months.

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A Positive NoteBy George Moore

Hi my name is George and I am an ABI sufferer.

My road to recovery has been a long painful and enjoyable experience.

Today I am still on that road and am still learning about my disability.

I know it sounds like a contradiction to use the words painful and

enjoyable in the same sentence but let me explain. My life has changed

dramatically and in lots of respects for the better.

Since my illness I have learned who my true friends are as opposed to

the fair weather friends we all have or had. I feel I have managed to

prioritise things a lot better and have a deeper understanding of the

important things in life. My injury has brought me into contact with

some wonderful people mainly the clients and staff of the Headway

organisation and the staff of the national rehabilitation hospital who

to this day remain my friends. I have been very lucky in that I have an

incredible wife without whose love and self sacrifice I would not be

where I am today. I, like most people, have good days and bad days but

lately my good days far outweigh my bad ones. I still find myself living

in the past and have to tell myself to get back to living in the now as this

is the only time we have control of.

My advice to anyone embarking on the journey I am on is to surround

yourself with positive people and try to ignore the negative ones. I

know it’s easier said than done but believe me it helps immensely with

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your recovery. Accepting your disability is also a huge step in moving

forward. Along this road you will meet many obstacles but if you adopt

a positive outlook it will help you overcome them. There is help out

there namely the aforementioned Headway whose staff will guide and

help you every step of the way.

With the help of my wife and genuine friends and Headway I have

managed to return to work which has made me feel so good about

myself and is definitely helping my recover. I am not advocating this

course for you because like all people ABI suffers are different. It is up to

each person to choose their own path, one that is realistic and right for

them so the best of luck to one and all on whatever path you chose.

About the AuthorGeorge is 48 years old and had a brain injury 7 years ago as a result of a brain haemorrhage. He spent 1 year in rehabilitation and has been attending Headway services for 6 years.

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Brain BreaksBy Philomena

Head bangs, coma, emergency, scans, airlift and surgery.

Bandages, tubes everywhere but I am alive.

Grateful for a skilful surgeon.

I can talk, walk, remember and am the same “me” or so it seems in

that oblivious euphoria of being alive.

People know there has been danger,

Sympathy and comfort surround me,

Happy to be so well, I reassure the concern,

Such warmth, so many well wishes, flowers and cards abound.

Scars heal over: hair grows, officially better.

Appearances can be deceiving,

Faulty wiring hiding behind a calm exterior,

Pain, tears, anger, confusion, chaos, fatigue, disconnection,

As I am gone elsewhere and cannot cope with living,

Though ironically so glad to be alive.

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About the AuthorPhilomena is 57 years old and had a brain injury 3 years ago as a result of a fall. She has been attending Headway services for 4 months.

I am not living up to expectations, feel a failure,

There is judgement in people’s eyes,

“You are malingering my dear, pull yourself together,

You are a walking wonder, a machine reassembled”

Things are not the same

A broken brain is not a broken bone,

The core is crushed, computer down, too much data, cannot cope,

The jigsaw puzzle is a mystery.

The very essence has been interrupted.

Everybody’s story is different,

Acknowledge acquired brain injury

Even when you cannot see it,

Applaud the hidden effort,

Encourage a healing head.

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About the AuthorPhillip is 54 years old and had a brain injury 4 years ago as a result of a fall. He has been attending Headway services for 4 months. He is a husband, father and grandfather.

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Baby StepsBy Phillip King

Two steps forward one step back or sometimes just

Running on the spot

Denial anger and frustration

Shunning a helping hand from family, friends and relations

When I got my ABC* these were some of my emotions

The old me was so apt and able and took life in his stride

The new me is not so apt and able and this I tried so hard to hide

Accepting there is something wrong has helped me to get along

Accepting a helping hand from others now I don’t

Get so flustered.

I have accepted the new me with his ABC

Learned to like and nurture him as I did the old me

Accept what I am now and not live in the past

Face the future whatever it holds for what will be

Will be with my ABC.

*ABC-Acquired Brain Condition

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What Happened Me?By Bernadette

Whenever I think of my story I have not accepted what has happened. Alright, I was in hospital for seven weeks and I have my discharge sheet and scan reports which shows me I had a brain injury but after that I cannot say if I fell or banged my head. Except for the obvious bruise on my head and severe bruising on my back the only thing I can recall about December is how stressed I felt. I felt my head was going to explode.

I have an inner anger which relates to work and how stressed I felt and still feel and hopefully I will work through it. When I listen to what others have gone through and are going through I feel guilty. I only have a hearing problem, no hearing in my right ear and little hearing in my left ear, and my balance is not good. Sometimes I am very angry and frustrated with myself. My sister, my brother-inlaw, and their children have been with me all of the way. They have been so supportive in everything since December and I could not have done it without them.

I have not gone back to work yet. Maybe I never will but at the moment I am thinking I could not face work and all its stress and worries. So maybe I will eventually accept that something did happen to me.

I feel that Elaine and our special group on Thursdays in Headway have helped me face some of my fears which is a huge thing for me.

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About the AuthorBernadette had a brain injury 6 months ago as a result of an unknown trauma to the brain. She has been attending Headway for the past 3 months.

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RecoveryBy Kathy

I wish there was someone to understand

that I am not fully able to withstand

the trials and tribulations that are at hand

in the everyday running of this land.

I know that I am no longer unwell

but all the same it’s hard to tell

to those that say I look so well

that I am not a hundred percent quite yet.

You can be sure I will win that bet

but just not yet.

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About the AuthorKathy is 33 years old and had a brain injury 10 years ago as a result of a brain tumor. She has been attending Headway services for 2 months.

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ABI ExperienceBy Philomena

I suffered a head trauma abroad. I already had a lot on my plate before the accident and the emergency/acute stage meant I was temporarily removed from those other responsibilities. After the immediate hospital phase I was lucky enough to have some time recuperating in the calm of a relative’s home.

Five weeks after the accident I was home and had a cat scan as an outpatient. This result was very good and I was very happy and relieved.However, I then found myself suddenly back to the stressful situation I had been in before my accident. I was not physically, mentally, or emotionally able to cope with the very basics of life never mind caring for an elderly relative or a household. I was unable to function and began crying, feeling totally overwhelmed.

I was brought back to my relative’s home where all I had to do was sleep, wash, eat, and relax. I slowly started to feel well again but when I returned home I was bombarded again with too much responsibility and the yo-yo of progress and reversal began with stress and pain recurring at times with severity. People expected a great deal of me, the hospital my mother was in and inability to cope meant that my family was also feeling the strain. The crying started again and again, I have never cried so much in my entire life. Everybody seemed to be in denial that there was anything wrong with me.

My main experience since was that “convent-like” condition, peace, and quiet brought relief from pain and I felt well again but any extra stress sent me spiralling down a painful road again and sometimes frighteningly so. The effects could last a few days or a week or more.

Sleep was not as easy as before and I found it difficult to get comfortable. Duties I used to fit around work now took more time and I needed a lot more help with housework. Noise, demands, verbal

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conflict all caused setbacks. Family members felt let down when Iforgot things or appeared not to care.

I was more passive about matters that I used to get excited about however I was more angry and likely to say what I really felt about personal issues, my sense of being neglected or undervalued, frustration at not being as organised as before, a sense of being overwhelmed, an inability to multitask or get through mounting household duties. I was more likely to get upset when people expected too much from me, it still upsets me that people who knew my situation were not willing to make allowances for my head trauma.

Very early, speedy medical intervention and a very skilful surgeon meant that I was very fortunate and I thoroughly appreciate that. However the gap between acute care in hospital and help with long term recovery issues became apparent once I left hospital.

GP’s are not always equipped to help patients with acquired brain injury and may seem dismissive. This vacuum in services adds to the distress of brain injury. A person who does not need ‘rehabilitation’ (in the strict sense) is often left without any support system for the physical, emotional, and psychological challenges after brain injury. Headway provides such information and support but most people are not given information about such services by their doctors. This seems to be a worldwide problem with regard to ABI. The person with brain injury may not even realise that they need support for quite some time and information is crucial to access appropriate services.

It is an ‘invisible’ problem in many cases, more education for medical practitioners and the general populace is required to highlight that the person in front of you in the supermarket or bus may have suffered a head trauma and recovery can be much slower than anticipated. Just because somebody looks fine does not always mean they feel whole.

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I Used to be Someone ElseBy Owen Cregg

I used to be someone else but in an instant that person vanished

because of something called a brain haemorrhage.

A new person now occupies that body, a person I find difficult to get

to understand, someone I don’t particularly like. A person who fails to

make the grade.

I often wonder how his family really see him. I am sure they would

prefer the older version, but are too kind to say so.

I know I can’t go back to where I have been five years ago. I have to work

at getting to accept the new person into my life and make allowances

for his shortcomings. I am not strong enough to do this on my own.

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About the AuthorOwen is 57 years old and had a brain injury 5 years ago as a result of a brain haemorrhage. He has been attending Headway services for 6 months. Still an optimist!!!

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My New JourneyBy Kathy

10 years ago after 9 months of misdiagnosis it was discovered I had a

brain tumour. My reaction was one of relief as I thought I was going

mad.

I had surgery to investigate and remove the tumour. Post surgery

in the hospital, I had problems with fluid drainage on the brain so

they operated again and inserted a shunt, which drains fluid into my

stomach.

4 years later the Tumour returned and I had surgery again followed with

radiotherapy.

After each surgery I was physically very healthy so carried on as normal.

I didn’t feel very different except perhaps more tired. The boom years

arrived and work was plentiful. If I was having a problem in work, I

left the job before I was pushed and always found the fault was with

someone else but not me. It couldn’t be me as I was a hard worker.

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I couldn’t see I was slower at doing things but by my 9th job in 10 years,

it was apparent something was not quite right, they all couldn’t be

wrong!!

Recession now in full swing there is no tolerance for my lack of speed.

The time has come to accept I cannot keep up and need to look at other

options.

Accepting I have a brain injury is very difficult. It is much easier to say

look what I’ve been through and how well I am.

There is a part of me that still thinks that perhaps I will get back to

normal. Unfortunately, if I am realistic, it is not likely (see I still cannot

say it won’t happen!!). I need to find a new way to live my life and make

a living somehow. This is my new journey.

I would like to thank the members of the Harbour Group for helping me

to reach this stage.

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The Harbour Group July 2010By Elaine Kelly

As the facilitator of the Harbour Group, my main goal when the group

started over 8 weeks ago was to try to create an atmosphere where

group members felt that they could listen and learn from each other’s

stories and experiences. However I could not have anticipated the

incredible experience that I was about to go through.

What I did not, and possibly could not, have prepared for when

working with this group was the power of the peer support that all

members provided. There was something about this Harbour Group

that I cannot accurately describe in words. When reflecting on what

this ‘indescribable thing’ is, the one thing that comes to mind is the

incredible capacity for empathy that each group member showed each

other.

No story, experience, or anecdote was irrelevant in the eyes of the

Harbour Group members. Every struggle, every achievement, every

aspiration was considered relevant, listened to and empathised with.

This incredible capacity for kindness towards each other, I feel, stems

from the extremely difficult circumstances that each group member has

endured in their life.

They can feel the emotional pain that one another suffered or continues

to suffer; they can identify with the struggle of having a brain injury in

a world that is for the most part unsure of what this means; and they

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also know the satisfaction and often joy of seeing change and recovery

happening day by day.

The inception of this information booklet, ‘The New Me’ is a brain

wave of the Harbour Group. The members felt that while the factual

information available about brain injury is necessary and very helpful

they thought that a documentation of personal accounts of brain injury

would complement the facts. Eight weeks later and Voilà! ‘The New Me’

is now complete. It documents through the poetry and prose of the

group members their personal experience of having a brain injury.

It has been a pleasure working with this group of people. It has also

been a great life experience, one that I will never forget. Seeing people

bond, develop friendships, and revealing the inner most private parts

of their lives is something extremely special and I can only describe

it as a privilege. As I write this piece I feel that I have found the word

that accurately describes this experience, a privilege. It was a privilege

hearing the stories of the members of the Harbour Group and it was

a privilege getting to know each and every one of them. It will be

sad saying goodbye but I will be content in the knowledge that each

person in the group is on the path to acceptance and recovery, albeit at

different stages on this journey.

The hope of the Harbour Group is that other people with brain injuries

can read this and can get solace in the fact that others have gone

through and are going through a similar experience.

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