AUTOMN 2007

A word from the president
Articles
My Journey thus Far

Craig J. PHILLIPS

  Proceeding OF THE SEMINAR "TO BE A FATHER OR A MOTHER WITH A TRAUMATIC BRAIN INJURY"
Conferences

HANDICAP AND FAMILLY - November 22th and 23th 2007 in Bordeaux - C.H.U. Bordeaux

Neurohabilitation and Robotics - December 13th and 14th 2008 in Rome - Ospedale Pediatrico Bambino Gesù

" Forensic expertise and compensation of brain injured persons "- December 20th 2007 in Brussels - E.B.I.S. in partnership with COFACE.
Seventh World Congress on Brain Injury - April 9th -12th 2008 in Lisbon, Portugal - I.B.I.A.

52nd Scientific Annual Convention - April 10th  - 12th 2008 in Germany - The German Society of Clinical Neurophysiology and Functional Imaging.

Publications
A Guide for the Relatives of a Brain Injured Person

Nadine Bosman

Being a parent when brain injury shakes family stability

Centre Ressources La Braise

The invisible handicap? Ways to face it in daily life…
Centre Ressources La Braise

http://www.ebissociety.org   -  ebis.secretariat@skynet.be


  A word from the president  

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This is the fourth newsletter from E.B.I.S. This newsletter is yours and continues mainly thanks to you and to the exchanges between you. So, do not hesitate to supply it with your suggestions, articles, information, bibliographies which you would like to share with the others.

E.B.I.S exists thanks to the personal implication of members who attach importance to make heard the point of view of persons suffering from cranial traumatism.

You are no doubt aware that E.B.I.S. will organise in Brussels, on December 20, 2007, a conference about "Forensic expertise and compensation of brain injured persons".

The aim of this conference is to compare the forensic approach of brain injured persons compensation within five different countries: Belgium, France, Spain, Italy and England. During this conference a simultaneous translation will be assured in French, English and Spanish.

I.B.I.A. (International Brain Injury Association) 7th World Congress will be held in Lisbon in April 2008. On the programme, a half-day will be organized in partnership between I.B.I.A. and E.B.I.S.

Just a particular word concerning our secretaryship. Marie DEGEEST left us in April 2007. We take the opportunity to thanks her once again for the extraordinary work she made for E.B.I.S. Since September 2007, Isabelle DISLAIRE succeeds her and carries out a work as remarkable as she did. E.B.I.S. couldn't exist without its secretariat.

Of course, E.B.I.S. exists also thanks to the work done by all the board's members as well as by other volunteers, underground workers. Thank you all for your precious collaboration.

Thanks also to help us to introduce and to keep E.B.I.S. going which has its own reason for living, more particularly in experiments and knowledge sharing.

Christine CROISIAUX


Articles  

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My Journey thus Far

Craig J. PHILLIPS

During my lifetime, I have been confronted with challenges, obstacles, and disappointments. In the scope of this brief autobiography I will share some of these events and circumstances. The purpose of sharing my experiences with you is not to blame, shame or to point a finger in anyone’s direction. I have found that little benefit comes through such behavior. Living life on life’s terms, to me, means that I deny the notion that I am a victim of my circumstances.

I have also arrived at some simple but profound conclusions. It is my belief that I cannot hope to know until I have learned the lesson. These lessons have often come through the pain of struggle. I have also come to believe that life is best understood backwards, and that is good enough for today. I also believe that perfection is a myth that if sought after will only bind one’s soul. Pursuing excellence on the other hand encourages creative expression and creative expression gives meaning to all life.

With this being said, I will begin. I learned at an early age that good was not quite good enough. I was also led to believe that my meaning and purpose was connected to what I accomplished. Because my best was seldom good enough, I rarely believed that I was quite good enough. In this context, I was also led to believe that it was my responsibility to take care of other people emotionally before I could hope to have a sense of well being. If someone was out of sorts emotionally, I internalized responsibility for their distress. If I could not appease or “fix” them emotionally, I would let them blame me for their distress and in turn I would shame myself for not getting it right. These combined messages kept me confused, bewildered and anxious, as I was rarely able to meet their expectations and/or able to “fix” them emotionally.

A significant event occurred when I was 10 years old that further complicated my ability to grasp social cues and be consistently successful inter-personally. My family was in a motor vehicle accident. Upon impact — the Cadillac hitting our Volkswagen Beetle — I was catapulted from the back seat to the windshield. On the way forward I fractured my left femur (thighbone) on the back of my Dad’s bucket seat and then hit the windshield. As a result of making contact with the windshield, I sustained an open skull fracture. The consequences of my skull being fractured resulted in damage to my right frontal lobe (executive center functioning), a severe brain contusion (bruising of my brain as it was jostled against the inside of the skull), and some brain stem involvement/damage.

I was in a coma for 3 weeks, traction for 1 month to set my femur and then placed in a spica or full body cast. Shortly after being placed in the full body cast, I was transferred to another hospital where I underwent brain and skull surgery. In follow-up to the brain surgery, I underwent a battery of tests (EEG’s and cognitive/ psycho/social) to determine the damage to my brain, my cognitive skills and my social function capabilities.

The results from these tests were given to my parents. They were told that due to the extent of my brain injury I would probably not be able to succeed beyond high school. These results were never shared with me, until after I obtained my Master’s Degree in Rehabilitation Counseling.

The accident happened in 1967. At that time, there was a limited understanding into neurological rehabilitation, at least in my circumstances. Consequently, I was on my own. I taught myself how to walk, talk, speak in complete sentences and was mainstreamed back into elementary school. I went on to graduate — on time — with my high school class in 1975.

Because I was able to perform and succeed academically and was able to overcome many obstacles, the impact and significance of my brain injury would lie dormant for many years. From the age of 10, I sought to resolve having an unknown invisible disability (being a traumatic brain injury survivor) with a belief system that convinced me that I had to be perfect to prove my worth and value. Needless to say, the injury to my brain consistently impeded my ability to be perfect.

Consequently, I developed a pervasive sense of shame, a low self-esteem as well as a lot of insecurities. I believed that I was intrinsically defective at the core of my being, which also undermined my ability to rely on the God of my understanding. As a result, I thought that I was on my own to figure out why I never was able to measure up to expectations. In my efforts to live up to being perfect, I developed a grandiose sense of responsibility. This belief system set the stage for me to become a human doing, as I attempted to overcompensate for my low self-esteem, my insecurities and the impact of my invisible disability.

In addition to over achieving, I resorted to people pleasing and approval seeking. When this approach proved to be ineffective, I tried to anticipate what others wanted or needed through mind reading. All too often I found myself saying, “I am sorry” when I got it wrong. I also tried to control outcomes so that I could avoid the pain of shame. None of these strategies provided freedom from the affects of shame. These strategies only seemed to reinforce what I had been led to believe that there was something inherently wrong with me. In my desperation, I set out on a personal crusade to root out the reasons why I consistently seemed to fall short.

In this pursuit, I became obsessively involved with various churches. I spent countless hours saturating myself in bible study, scripture memory and listening to a wide array of teachers –from charismatic, full gospel, fundamental, non-denominational, and denominational churches / leadership. I attempted to apply what I was learning, but continued to fall short. Some would say that I just did not do enough: pray, read, or believe. To that notion, I would say phooey. My interest was to do whatever it took to become a victorious over comer and at the same time to be of service to God and to my fellow man. In this pursuit, I went on to obtain my undergraduate degree in theology from Oral Robert’s University. I attended Asbury Theological Seminary for 1 year and then went on to obtain my master’s degree in Rehabilitation Counseling from the University of Kentucky.

In my attempt to be of service to my fellow man / woman, I have worked as a mental health aide/counselor within a 28 day residential treatment center for dually diagnosed individuals and then in a day treatment / partial hospitalization program for adults with mental illness. I have also worked as a Certified Rehabilitation Counselor within both the public and private sectors assisting individuals with different types of disabilities. I have also assisted families and individuals while working within the field of nursing, grief counseling, and within both the funeral and cemetery industries.

I have been actively involved in my own recovery process from the affects of inadequate modeling, the impact of the injury to my brain injury, and for my own distorted perceptions. In addition to my spiritual and academic pursuits, I have been actively involved in various 12- step fellowships for the last 20 years. I have found that being involved in such work has strongly contributed to and motivated me to seek personal empowerment. Moreover, I have tenaciously pursued ways to be of maximum service to God and others.

These varied life experiences, as well as my educational and practical work endeavors have provided a wealth of insight and a foundation upon which I have written my book, Table Topics for the Soul – Journey to the Heart. Copyright © 2006 Registration #: TXu1-330-434

My hope is that those individuals, who may have lost hope, will see a new light. This light will then guide them to a renewed hope, an array of possibilities, and a new zest for living regardless of any present circumstances, disappointments or disabling conditions.

Craig J. PHILLIPS

Second chance to live

http://secondchancetolive.wordpress.com


 Proceedings

 

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Proceedings of the 7 November 2006 seminar

"TO BE A FATHER OR A MOTHER

WITH A TRAUMATIC BRAIN INJURY"

are available on our website www.ebissociety.org


Conferences  

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Bordeaux (France) - November 22th-23th 2007

Congrès

Handicap and Familly

Pratical information

Date and venue :   

November 22th : Salle Louis Arné, Bâtiment Tastet Girard, Hôpital Pellegrin

Tram A (direction Mérignac) – arrêt Hôpital Pellegrin

November 23th  : dans l’amphithéâtre de.l’Institut des Métiers de la Santé – Pellegrin

Tram A (direction Mérignac) – arrêt François Mitterrand

Contact :

05.56.79.56.79. Poste 15172

Fax : 05.56.79.49.11

                               E-mail : handicap-famille@chu-bordeaux.fr

Program off the two days (PDF fromat in french)


 December 13th-14th 2007 - Rome

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University Sapienza - Rome

Neurohabilitation and Robotics

Organisation :

Ospedale Pediatrico Bambino Gesù

Contact :

06-6859.2290/2294

Fax : 06-6859.2443

E-mail : congressi@opbg.net

Web site : www.ospedalebambinogesu.it

Scientific program (PDF Format)


 Thursday 20th December 2007 - Brussels

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Seminar

 " Forensic expertise and compensation of brain injured persons "

EUROPEAN BRAIN INJURY SOCIETY

In partnership with COFACE

 Confederation of Family Organisations in the European Union

Objective of the Seminar

Comparison of the forensic approach of brain injured persons’ compensation in five EU countries: Belgium, France, Italy, Spain and UK.

Simultaneous interpretation will be provided in English, French and Spanish.

Pratical information

Date : Thursday 20th December 2007 – 8.30 a.m. to 4.30 p.m.

Venue : European Economic and Social Committee

Jacques Delors Building – room 62 – 6th level

Rue Belliard, 99

1040 Brussels  - Belgium

How to access to the meeting room : Metro Maelbeek

Advance registration is required by 14th December 2007 at the latest

Register from now on ! (PDF format)

Please fill in the attached registration form and return it to E.B.I.S secretariat

with a copy of your payment.

Further information can be obtained from the EBIS secretariat

at 00/32/(0)2/ 522.20.03, fax 00/32/(0) 521.65.55 or by e-mail : ebis.secretariat@skynet.be

Preliminary program (PDF format in french)


 April 9th-12th, 2008 - Lisbon

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Seventh World Congress on Brain Injury

EBIA - International Brain Injury Association

Pratical information

Venue :   

Pestana Palace Hôtel

Lisbon – Portugal

Contact :

Tel: (+703) 960-6500

Fax: (+703) 960-6603

Email : mjroberts@aol.com

 Web site : http://www.internationalbrain.org

Preliminary program (PDF format)


 April 10th - 12th 2008 - Germany

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52nd Scientific Annual Convention

The German Society of Clinical Neurophysiology and Functional Imaging

Pratical information

Conference Venue :

Maritim Hotel Magdeburg, Germany

Organisation :

Conventus Congressmanagement & Marketing GmbH
Markt 8
07743 Jena
Tel: +49 (0)3641 353 30
Fax: +49 (0)3641 35 33 21
dgkn2008@conventus.de

www.conventus.de/dgkn2008


Publications  

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A Guide for the Relatives of a Brain Injured Person

As we know, brain injury, especially when severe, causes a major disruption in the family. Families and relatives of the victim are left feeling totally helpless and confused. They face a vast number of questions which to them appear to be all of fundamental importance. After a while, together with the evolution of the victim, their questions will change but, whatever they are, they will mainly seek to find answers among professionals. However, experience shows that it is not always possible to find answers to some questions, such as the life prognosis in the hours or days following severe trauma, the duration of a deep coma or of post-coma amnesia, the recuperation capacities of such and such motor or cognitive function, the long term evolution, and so on.

As health professionals and beyond the fact that we do not always have sufficient time to devote to the victim's close relatives, we also know by experience that the circle of family and friends are not necessarily able to assimilate the information provided. Indeed, the main reasons for this are a total lack of preparation for this type of situation and for the sudden upheavals brought about by the accident (the 'family trauma'), the emotional sideration during the immediate post-trauma period, the – often total – ignorance of the problem, upon which are added various psychological reactions such as impotency, revolt, depression or even denial. What's more, we also know how important it is for relatives, that we repeatedly broach specific, crucial and often very emotional issues.

A recent book issued by Solal publications represents a source of information and thoughts that may prove particularly useful both for the victim's relatives and for health professionals working with brain injured patients. By addressing, in detail, problems relevant to every stage of the victim's evolution, the book fills a gap: indeed, to date there is no such book in French providing a general survey of the numerous difficulties – individual, emotional and affective, familial, social, in school or in work – with which a brain injured person's relatives are confronted, whether the injury be slight, moderate or severe.

Written by an EBIS member, Michel Leclercq, neuropsychologist at the William Lennox Neurological Centre in Ottignies (Belgium), the book is called: "Le traumatisme crânien: guide à l'usage des proches" ('Brain Injury: a Guide for Relatives') (Editions Solal, Marseille). The work addresses several aspects of the trauma and its consequences. As the author underlines, even if a book will never replace the individual relation, it represents added value for the relatives by allowing them to access a corpus of information in the medical, technical, rehabilitation, social and self-help group fields. It raises awareness on the direct and indirect consequences of the trauma, addresses – always in simple terms – not only possible solutions to the problems relatives meet in their daily life (in the hospital, during rehabilitation and reinsertion, at home), but it also analyses different reactions and behaviours which, although comprehensible, may turn out to be an obstacle or, in some cases, even harmful to the victim and his/her autonomisation. The book is also of precious assistance to health professionals in the sense that, on the one hand, it allows relatives to clarify beforehand certain issues that they will then take up with their 'health interlocutor' and, on the other hand, it represents a source allowing them to crosscheck and refine the information that they have obtained elsewhere, e.g. from other professionals. Finally, we should emphasize the fact that the author also insists all through the book on the importance of involving relatives during the various stages of the treatment. They become full partners and are expected to join their efforts to the competences of the professionals in order to ensure the victim all opportunities for the best possible recovery.

The book can be obtained in libraries or from muriel.minet@skynet.be

Nadine Bosman

 


  

 

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In the context of our project on the issue of ‘Being a brain-injured father or mother’, which is supported by the King Baudouin Foundation, la Braise has published a brochure:

‘Etre parent quand la lésion cérébrale ébranle l’équilibre familial’

(Being a parent when brain injury shakes family stability)

Parenthood is a theme that concerns us all as human beings. We are the child of … We are or will maybe be parent of …

Being a parent is an exceptional and deeply moving experience, it surprises us, makes us surpass ourselves, prolongs ourselves…

But sometimes an accident upsets the applecart …

This brochure was prepared on the basis of evidence given by brain injured persons, their children, their spouse and relatives. Who better than them could guide us in such an initiative?

The brochure informs on the after-effects of traumatic brain injury and their impact on the family circle and close relatives. It addresses the different changes brought about within families and examines a few examples to soften this family upheaval. The brochure is directed to all persons in anyway concerned by the issue of parenthood and traumatic brain injury.

Brochure (PDF Format in french)

The brochure can be downloaded from the website www.labraise.org

It can also be obtained from

Le Centre Ressources La Braise, tel. ++32/(0)2/523 04 94


  " Le handicap invisible?

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Quelques pistes pour y faire face au quotidien …"

(The invisible handicap? Ways to face it in daily life…)

In Belgium, every year, about 3,000 people suffer from major after-effects following cerebral lesion (head injury, CVA (stroke), thrombosis, anoxia,…).

The first part of the brochure informs on the various cognitive, behavioural and psycho-emotional sequelae involved in the invisible handicap.

The second part of the brochure suggests practical ways and means to assist in everyday life.

Brochure (PDF Format )

It can be downloaded from the website www.labraise.org

 It can also be obtained from

Le Centre Ressources La Braise, tel. ++32/(0)2/523 04 94


http://www.ebissociety.org   -  ebis.secretariat@skynet.be

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