The New Me

The New Me Writing 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 experience as an “insider” with an acquired brain injury. © Headway, 2010

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Contents I Can Still

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A Positive Note

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Brain Breaks

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Baby Steps

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What Happened Me?

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Recovery

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ABI Experience

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I Used To Be Someone Else

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My New Journey

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The Harbour Group July 2010

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I Can Still

By 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 Author Aidan is 50 years old and had a brain injury 36 years ago as a result of a traffic accident. He spent a number of years in rehabilitation and has been attending Headway services for 2 months.

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A Positive Note

By 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 Author George 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 Breaks

By 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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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.

About the Author Philomena 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.

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About the Author Phillip 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 Steps

By 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 Author Bernadette 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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Recovery

By 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 Author Kathy 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 Experience

By 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 I forgot 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 Else

By 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 Author Owen 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 Journey

By 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 2010

By 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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