Head Injury Society and Me

Nearly four years ago I was involved in a high speed motor vehicle accident. As we now put it, my Mazda 121 bubble car became half a 1.5 litre car. A pajero towing a golf cart on a trailer hit my passenger door. I had severe abdominal injuries causing major bleeding and paramedics at the scene did not believe I would make it to hospital. I am told that one half of my face was black. I have no concept or memory of this. It does explain why those visiting me were so distressed. I spent a short time in Intensive Care on a ventilator moving through the system into a surgical ward at Waikato Hospital. I spent a total of ten days in hospital.

It was three months before I made contact with the Head Injury Society. Like many people in the Society I had no idea that I had a brain injury. I had worked in Intensive Care and the thought of what happened to people who woke up quickly had never entered my mind. I only contacted the Society after pushing from an Occupational Therapist friend in Wellington. At this stage I was frightened and confused and in retrospect can see that I was must have been very difficult to live with.

To those here today who are unfamiliar with Traumatic Brain Injury, yes I sound good. Yes I look good. The problem is that I am not. I have major problems that include fatigue, sleep disorders, mood disorders, an inability to make choices (like unpacking a box after moving), extreme sensitivity to sound so that music has become noise and many more.

In my old life, I had become very successful in Injury Prevention and rehabilitation from Overuse and back injuries. I was a PROVIDER for ACC not a recipient! At the time of contact with Joan the field worker for the Waikato Head Injury Society I was still working in a training capacity in my companies though part time. I was a registered nurse who had moved into Occupational Health gaining University qualifications and from there to Injury Prevention. I stopped work when an Australian client rated my performance as 'unsatisfactory. Unwell and should not have been here.'

Today I wish to describe some of the areas in the society that have made a big difference for me. I have a number of friends who have sustained brain injuries so some of their thoughts are included.

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Reason for Society's Existence

I believe the society is needed. WHY?

Support and Contact

In the first instance to support those who have suffered a head/brain injury. I use the term Brain injured for me as my head was not damaged by fractures or bleeds. Please understand that I am meaning both when I speak of Brain injury.

When I first spoke with someone in the Society I was given a time and place so that we could meet. In retrospect that was the most important conversation I had. If I had been told about a meeting in the evening I would not have gone. Even though I desperately needed contact and information I could not go out at night and at that stage was still unable to drive. My husband came with me to that appointment and we were given a folder with printed material both for Roger as my partner and me as the injured person.

I did go to a group meeting at night 2 months later. Just before leaving home I said that I had the funny feeling that I was the guest speaker. My stunned husband did drive me there. I went in and when introduced to the President had him confirm that I indeed was the guest speaker by introducing me to someone else. Right! Being a natural talker I winged it. Three important facts.
1: Most there were brain injured so they will not have realised how bad I must have been!
2: They would not remember anyway and
3: I had no idea at that point how much I rambled around in circles and cannot remember what I said either! Just as well.

Two years later I became a contact person for the HIS Field Worker to pass on to others. This has been for women because in the main I have found it easier for me to work with women. It is really important for we injured to have contact with others with injuries so that we can find out we are OK and not mad. A fear of being mad is very real. This contact I am describing is different to going to group social meetings where I really struggle. I can cope with four people, sometimes 6. More than that is a crowd I will touch on this more later.

A need that I had from the society and others too is help with seeing doctors and specialists. There were times when it was not possible for my husband to be present. When friends were unable then Joan the Field Worker would be able to help. Because of our memory problems we are lucky to remember going let alone what the doctor said!

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Information and Resources

Understanding Brain injury is really important. It is not hard to collect together some printouts of information on Head Injury. This was the first source I received. I also read Head Injury the Facts by Dorothy Grunwold which is a New Zealand text. After searching on Amazon I found a large list of books available. I purchased some of these and passed on the search Joan. In turn she was able to access funding for books and so had a great spend! In the process of that she purchased this book, Brainlash by Gail Denton. When I opened it I discovered someone who was writing for brain injured! The font was big, lots of white space and few headings. Not only that the book is brilliant.

More about information. I have what I believe to be the most important sentence about my brain injury.

I am no less intelligent than before the accident. I simply can no longer access information on demand.

I am not alone. It is often assumed that we are not interested or do not want to know. This is not true. The vast majority do want information and knowledge. The key is to give this in non-medicalised jargon with explanation as to why. If we need help reading give it, we need as much information as we can get. There is also a difference between being helpful and patronising. Remember too that we do get fatigued and as I said to someone recently I had no idea of the meaning of that word before my accident. It has taken me over three weeks to make this paper an achievable task.

The most important information I did gain through the Society was my hospital file. It took far less time this way and answered a lot of questions as well as telling me about the spine fractures that I had. I have since helped others translate their own files. A good example of this was one person that had had multiple skull fractures and bleeds being told she had a mild concussion. She did not understand the serious nature of her injury and once she knew details she was able to get more help when needed.

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Injured Support Groups

I would like to tell two stories about these.

I heard about a women's group in Auckland that had a number of professional women that were injured. I decided to go to the meeting as I had just lost my work and any self esteem I had had left. I walked into a room full of strangers to hear “Has anyone else put the hairbrush in the fridge?' four people put their hands up!!!! Well my response to myself was: I'm not that bad”. Then someone asked: Who is not allowed to drive at night? Oh, 9 people including me put the hand up. So then I asked 'Who is not allowed to drive on the Motorway? four people again. For the first time in 8 months I realised I was not alone. That was the beginning of my positive journey.

The second story is about meetings. Once that August meeting proper started it was managed by a Brain Injury Association Field Worker. We were told that our input was required to help plan where the group was heading. Feedback quickly came to say that night meetings were really hard. Some were working and it was too much. Others were exhausted so we asked for a day meeting. We were told that this was not possible as the field worker would not hold the meeting during the day. We then suggested that for flexibility that a weekend day occasionally for outings like a picnic would be good. Back came the answer of No. The meetings will be on a Monday evening here at the Centre. Our unasked question then was why did you bother asking for our input? Sadly after that the group died a graceful death. We did have some weekend lunches with partners that we arranged. The distance for me made it too hard. So I then approached Joan about setting up a women's group in Hamilton.

Joan advertised a meeting time and date. The meeting took place in the morning so we would be less fatigued. It ran and indeed runs for a maximum of 90 minutes including refreshment. The number of people that came out of the woodwork was amazing. At the first meeting there were 12-14 women and the environment was too small. Yes we were exhausted by the end and exhilarated. Again the emphasis was “we are not alone”. It was interesting too to find such a positive outlook. I had always considered support groups to create problems and encourage symptoms. How wrong I was. We were not interested in grizzling about ACC. We wanted help with what was hard for us. One personal example I can give is finding a hint for my leaving the kitchen to do something else and leaving food cooking. Yes, it happens often. Another person suggested that putting a chair in the gap or gaps can make a big difference. Hugs were important especially for the new people that on listening discover they are OK.

The venue for these meetings became a critical component from a light and sound perspective. Our meetings in Hamilton ended up in a large room with lots of windows and lights. We quickly pulled most of the curtains and turned off the lights. New people would comment on how easy the room was for them to be in! Those who could cope with light could face the windows! Sound is also an issue as echo and noise of feet can be difficult and carpet reduces this.

Whilst I understand that the branches may function differently I believe these are areas that could be consistent. Hey I often sat in my shades as that helps me cope. In fact I wear them shopping and even at night!

As I write this I realise that it may be that women want to talk as opposed to playing cards, games etc. I can not concentrate for that. My cognitive function is impaired too much. At the Women's group we were always very strict about the need for one person to talk at a time and for a limited time. Most of us cannot cope when there is more than one conversation going at a time. The men in Hamilton were upset that we were having a separate meeting. They in turn began to see the value of having their own discussion time. I mean women are not going to talk about some areas in their lives when men are in the room and VICE VERSA.

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The Future

I am aware of the move through the country to combine the Brain Injury Association and the Head Injury Society.

In the first instance I would say 'What is the problem?' However I do know that when I approached the BIA in Hamilton I was told categorically (like firmly) that I was not bad enough for them. OK. So what are the criteria for action there? If the BIA only deal with obvious physical symptoms as well as brain injury as opposed to Brain injury alone then this needs to be clear. The literature I read did not clarify this. And yes I have a moderate to severe injury as defined by specialists.

I suspect that there are other issues such as money that are playing a part in the apparent wish for unity. Of course funding is an issue. Field Workers in the HIS appear to be funded through a wide range of grants as opposed to branches being responsible. I understood the BIA to be much more the Rehabilitation service provider. I am not sure that a Rehabilitation provider should be the sole provider of support. While I do respect training and qualifications, often what I have needed is a hug and someone to talk too. Degrees are not necessary for that. If there is an amalgamation PLEASE negotiate the support arm as independent from the provider.

What I do ask is that you keep our needs as your primary focus. When I needed help the Head Injury Society gave it. Help for my family and friends was secondary to that. As I continue my journey of improvement I know there are many others out there that would also benefit from help. Please find them.

Anne Campkin
St Kilda
DUNEDIN

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