Spirituality in the presence of brain injury

1. Spirituality in the presence of brain injury Joanna Colllicutt McGrath

2. What is spirituality?

3. �Spiritual Intelligence�Gardner (1999) Concern with cosmic or existential issues Achievement of a state of being Effect on others � �charisma� Book �Intelligence reframed�Book �Intelligence reframed�

4. The Spiritual Life(Collicutt McGrath, 2003) Is informed by values and higher order goals Takes subjective experience and the inner life seriously Consciousness Emotion Reflection, which may be directed towards the transcendent Has a social place reflected in coherent and integrated roles and relationships This is a generic description. It can be further refined in terms of a specific religious disposition. For instance in Christianity the values and goals would be that of the Kingdom of God, the inner life would include prayer and worship intentionally directed at the Christian God, and the social place, roles and relationships would be as the body of Christ in the church and the world. But NB it should be possible to look at other brands of spirituality or religious traditions in this manner. This is a generic description. It can be further refined in terms of a specific religious disposition. For instance in Christianity the values and goals would be that of the Kingdom of God, the inner life would include prayer and worship intentionally directed at the Christian God, and the social place, roles and relationships would be as the body of Christ in the church and the world. But NB it should be possible to look at other brands of spirituality or religious traditions in this manner.

5. The �unspiritual� life No values and largely hedonistic goals Little engagement with subjective experience and the inner life Fragmented social roles and relationships worst form involves treating other people as objects. In extreme form might look like this.In extreme form might look like this.

6. A Judaeo- Christian theological perspective on the spiritual person Imago dei St. Augustine and the �human trinity�: Memoria Intellectus Amor

7. Questions raised by acquired brain injury Loss of abilities necessary for �the spiritual life� Loss of personal identity Loss of human status �(loss of the �image of God?�) These include the ability to make relationships with God and/or other people. Not knowing who it is who stands in relationship with God and/or other people. - this is an issue I will flag up here but not pursue further because of lack of time, and it is about membership of the human race being questioned � and therefore the capacity for spirituality being questioned a priori. The attribution of subhumanity to certain groups of very disabled people by others If image of God entails ability to think, relate and remember � then image has been smashed � a theological attribution A philosophical assumption that rests on a combination of �brain-body dualism� and locates the soul in the brain � in its old version mind-body dualism with soul inhabiting pineal gland -Descartes, in new version with reductive materialists like Francis Crick soul is certain circuits in eth frontal lobe. If these brain areas are destroyed we have no soul, we cease to be human. These include the ability to make relationships with God and/or other people. Not knowing who it is who stands in relationship with God and/or other people. - this is an issue I will flag up here but not pursue further because of lack of time, and it is about membership of the human race being questioned � and therefore the capacity for spirituality being questioned a priori. The attribution of subhumanity to certain groups of very disabled people by others If image of God entails ability to think, relate and remember � then image has been smashed � a theological attribution A philosophical assumption that rests on a combination of �brain-body dualism� and locates the soul in the brain � in its old version mind-body dualism with soul inhabiting pineal gland -Descartes, in new version with reductive materialists like Francis Crick soul is certain circuits in eth frontal lobe. If these brain areas are destroyed we have no soul, we cease to be human.

8. What is acquired brain injury? SEVERE SEVERE

9. Key characteristics Sudden-onset cerebral event in adulthood in the context of previously normal brain function Psychological, and often physical, impairment of varying types, degrees, and combinations Non-progressive course Initial relatively rapid recovery followed by a slower phase, with full recovery of past function very rarely achieved. Normal life expectancy (often � not always) Effect on families at least as significant as on identified patient The most common causes of ABI are closed head injury (due to road traffic accidents, assaults, or falls); stroke; subarachnoid haemorrhage; cerebral hypoxia (secondary to prolonged cardiac arrest, near drowning, hypoglycaemia, carbon monoxide poisoning); cerebral infections (meningitis, encephalitis) and tumours. Brain injury can thus affect anyone, at any age. Full recovery does not happen because of new neurons do not replace dead neurons, and any healing of damaged cells is only partial. The brain has little usable spare capacity (contrary to popular mythology that you only use 10% of your brain.)The most common causes of ABI are closed head injury (due to road traffic accidents, assaults, or falls); stroke; subarachnoid haemorrhage; cerebral hypoxia (secondary to prolonged cardiac arrest, near drowning, hypoglycaemia, carbon monoxide poisoning); cerebral infections (meningitis, encephalitis) and tumours. Brain injury can thus affect anyone, at any age. Full recovery does not happen because of new neurons do not replace dead neurons, and any healing of damaged cells is only partial. The brain has little usable spare capacity (contrary to popular mythology that you only use 10% of your brain.)

10. Types of impairments Motor Sensory Visual Auditory Emotional Emotionalism, alexithymia Cognitive Attention Visual perception Action (�praxis�) Language Memory Executive Moderate to severe brain injury may affect most aspects of a person's life. The immediate consequences are likely to include both cognitive and physical impairments. These will be evident as disabilities such as disorientation, inability to make one's wishes known to others, inability to walk or to reach for desired objects. Physical appearance may change beyond recognition. Some impairments simple to understand and explain. Others are conceptually challenging. Some are painful to experience, some are confusing, some embarrassing, some terrifying. In combination they have the potential to be devastating. Learning to walk again might be manageable if your memory hadn�t become so bad that you couldn�t recall your physiotherapy instructions. Building a relationship with the child you had forgotten might be achievable if you didn�t keep bursting into tears when talking to her. Managing your feelings of depression might be possible if only you could get out of your wheelchair and go for a good run. In addition the brain injured person's social situation changes dramatically. He or she becomes a 'patient', may be admitted to hospital, and may become a long term resident in a rehabilitation facility. Thus, in a matter of hours dramatic, and often long-term, changes in physical and social status take place. The person will have experienced an event that may have brought him or her close to death and may pose a continuing threat to life. Moderate to severe brain injury may affect most aspects of a person's life. The immediate consequences are likely to include both cognitive and physical impairments. These will be evident as disabilities such as disorientation, inability to make one's wishes known to others, inability to walk or to reach for desired objects. Physical appearance may change beyond recognition. Some impairments simple to understand and explain. Others are conceptually challenging. Some are painful to experience, some are confusing, some embarrassing, some terrifying. In combination they have the potential to be devastating. Learning to walk again might be manageable if your memory hadn�t become so bad that you couldn�t recall your physiotherapy instructions. Building a relationship with the child you had forgotten might be achievable if you didn�t keep bursting into tears when talking to her. Managing your feelings of depression might be possible if only you could get out of your wheelchair and go for a good run. In addition the brain injured person's social situation changes dramatically. He or she becomes a 'patient', may be admitted to hospital, and may become a long term resident in a rehabilitation facility. Thus, in a matter of hours dramatic, and often long-term, changes in physical and social status take place. The person will have experienced an event that may have brought him or her close to death and may pose a continuing threat to life.

11. Example 1: The Amnesic Syndrome Normal �working memory� (telephone numbers) Normal �semantic memory� (general knowledge) Normal �IQ� (problem-solving) Retrograde amnesia (memory from before the injury is lost) Dense anterograde amnesia (new memories are not laid down) Caused by hippocampal (medial temporal lobe) damage through trauma or disease. Role of hippocampus is to process and store new memories. Insert diagram The losses involved in amnesia are most obviously the ability to do things and to be independent in caring safely for oneself or holding down a job. But at least as important are the emotional consequences and the consequences to relationships. People with amnesia are living in the moment, have no sense of purpose, no sense of control of their own lives, a loss of personal history and identity, and inability to learn new things about other people, a loss of the pleasure of reminiscing, a loss of the ability to recall meaningful intimate shared experiences form the past, maybe not able to recognise children or spouse. No wonder the rate of marital and family breakdown for these people is so high. When we think about our relationship with God, especially the covenant relationship of the Hebrew Scriptures a lot of emphasis is placed on remembering significant events. Caused by hippocampal (medial temporal lobe) damage through trauma or disease. Role of hippocampus is to process and store new memories. Insert diagram The losses involved in amnesia are most obviously the ability to do things and to be independent in caring safely for oneself or holding down a job. But at least as important are the emotional consequences and the consequences to relationships. People with amnesia are living in the moment, have no sense of purpose, no sense of control of their own lives, a loss of personal history and identity, and inability to learn new things about other people, a loss of the pleasure of reminiscing, a loss of the ability to recall meaningful intimate shared experiences form the past, maybe not able to recognise children or spouse. No wonder the rate of marital and family breakdown for these people is so high. When we think about our relationship with God, especially the covenant relationship of the Hebrew Scriptures a lot of emphasis is placed on remembering significant events.

13. Example 2: Dysexecutive Syndrome Impaired planning and execution of goal directed behaviour: Impulsiveness Disinhibition Poor self-monitoring Concrete thinking Perseveration Egocentricity Lack of initiation Related to prefrontal cortex damage (brain diagram 1) Unlike amnesic syndrome not all of these present in all cases. Subtle but devastating deficits. Very poor social skills therefore relationships suffer hugely. Egocentricity means that capacity to love is greatly diminished. Love is often seen as emotional but it has a cognitive component. Lack of judgment over important life decisions may seem �autistic� or at other extreme �feckless and promiscuous�. Vulnerable. In theological terms they move from the realm of the spirit to the realm of the flesh. Again, what is primarily a cognitive processing problem results in behaviour that lacks moral regulation. If the spiritual life is about the pursuit of goals, engaging in relationship, and having access to the inner life including stream of consciousness and continuous memory, think how it is compromised by both amnesia and executive problems. How like the �unspiritual life� the life of a person with these sorts of problems is. Related to prefrontal cortex damage (brain diagram 1) Unlike amnesic syndrome not all of these present in all cases. Subtle but devastating deficits. Very poor social skills therefore relationships suffer hugely. Egocentricity means that capacity to love is greatly diminished. Love is often seen as emotional but it has a cognitive component. Lack of judgment over important life decisions may seem �autistic� or at other extreme �feckless and promiscuous�. Vulnerable. In theological terms they move from the realm of the spirit to the realm of the flesh. Again, what is primarily a cognitive processing problem results in behaviour that lacks moral regulation. If the spiritual life is about the pursuit of goals, engaging in relationship, and having access to the inner life including stream of consciousness and continuous memory, think how it is compromised by both amnesia and executive problems. How like the �unspiritual life� the life of a person with these sorts of problems is.

14. And there is more: Case of Phineas Gage. He is �no longer Gage�. � what some people call a �personality change� � there is a loss of identity, not merely ability. This is evident to patient and those who have been close to him. And there is more: Case of Phineas Gage. He is �no longer Gage�. � what some people call a �personality change� � there is a loss of identity, not merely ability. This is evident to patient and those who have been close to him.

15. Personal Identity Physical identity and integrity Free and independent movement and action (autonomy) Habitual behaviours and behavioural style Social place (roles and relationships) Personal narratives Boundaries infringed, appearance altered Physical disability but also impaired cognitive capacity to make decisions, initiate ,organise and control pursuit of meaningful goals Loss of a whole range of talents, skills, and habits - change of gait or recognisable features of voice Broken relationships, relinquished domestic or vocational roles Fragmented memories Boundaries infringed, appearance altered Physical disability but also impaired cognitive capacity to make decisions, initiate ,organise and control pursuit of meaningful goals Loss of a whole range of talents, skills, and habits - change of gait or recognisable features of voice Broken relationships, relinquished domestic or vocational roles Fragmented memories

16. Joanna Brown�s pictureJoanna Brown�s picture

17. Other key questions for people with ABI Will I be normal?.. Why did this happen to me? Is life worth living after this brain injury? Prigatano (1991) Existential questions about self (identity and worth), the meaning of life, and the future � a search for significance and hope Empirical findingsEmpirical findings

18. Paradox Religion-spirituality is a search for significance in ways related to the sacred Religion-spirituality comes to life in critical situations Pargament (1997) Spirituality emerges because of the loss of psychological bases of personal spirituality - �the edge of efficacy� Boundary situations (a term used by Hood) are occasions in which people are confronted with the inexplicable and irresolvable limits of the world. It may be that only at the boundary can we discover the centre. But how expressed in people who are damaged and limited? How nurtured by health care professionals and ministers of religion and faith communities? Boundary situations (a term used by Hood) are occasions in which people are confronted with the inexplicable and irresolvable limits of the world. It may be that only at the boundary can we discover the centre. But how expressed in people who are damaged and limited? How nurtured by health care professionals and ministers of religion and faith communities?

19. Some Religious/Spiritual/Existential Themes Transformation of suffering Frankl�s logotherapy Posttraumatic growth Religious images of ambiguous twilight zones Sheol The grace of God Humanity, identity, and worth conferred by significant other(s), not intrinsic to individual Growth through suffering a psychological idea but closely tied to an important theme in most religions. �There has been an intense development of my spiritual life and finding direction. It has changed my life hugely � my priorities are so different. I�ve let go of things that were previously important and now seem worthless. Previously I had a low view of myself �and I still struggle with this. But despite my loss of ability and changed appearance, which is extremely difficult at times, I have got through it and it has enabled me to let other people in� I gave up a whole lifestyle - a job with high pay - I am now in a new field and moving towards areas of work that are extremely satisfying but poorly paid. I�m very happy with my lifestyle. The best things that ever happened to me were my divorce from my first husband and my brain injury. When you make sense of it you can put it aside and get on with your life.� Sheol � neither living nor dead but redeemed Some examples of biblical texts on next 2 overheads � Psalm 8 is the key (emphasises that other traditions might look in different directions.) Growth through suffering a psychological idea but closely tied to an important theme in most religions. �There has been an intense development of my spiritual life and finding direction. It has changed my life hugely � my priorities are so different. I�ve let go of things that were previously important and now seem worthless. Previously I had a low view of myself �and I still struggle with this. But despite my loss of ability and changed appearance, which is extremely difficult at times, I have got through it and it has enabled me to let other people in� I gave up a whole lifestyle - a job with high pay - I am now in a new field and moving towards areas of work that are extremely satisfying but poorly paid. I�m very happy with my lifestyle. The best things that ever happened to me were my divorce from my first husband and my brain injury. When you make sense of it you can put it aside and get on with your life.� Sheol � neither living nor dead but redeemed Some examples of biblical texts on next 2 overheads � Psalm 8 is the key (emphasises that other traditions might look in different directions.)

20. What is man? That Thou art mindful of him (Psalm 8.1) What if I can�t remember anything? �Can a mother forget the baby at her breast�though she may forget, I will not forget you� (Isaiah 49.15) What if I no longer have the capacity to understand about God? ��you know God- or rather are known by God� (Galatians 4.9) �� now I know in part; then I shall know fully, even as I am fully known.� (1 Corinthians 13.12)

21. What if I am not capable of loving God? �This is love: not that we loved God, but that he loved us� (1 John 4.10) What if my behaviour is poorly controlled, impulsive, and �immature�? �Let the little children come to me and do not hinder them, for the kingdom of heaven belongs to such as these� (Matthew 19.14) �For it is by grace you have been saved through faith � and this not from yourselves, it is a gift of God � not by works, so that no-one can boast.� (Ephesians 3.9)

22. Clinical applications Spiritual agenda to be addressed Loss Hope Acceptance of a new and ambiguous identity with both patient and family Helpful religious forms Sacred narratives � wilderness journeys, exile Ritual for the negotiation of liminal states Mode of delivery Support for impaired language Multimodal Support for impaired memory, including routine and repetition Godly Play?

23. References McGrath, J. (2003). Beyond restoration to transformation: Positive outcomes in the rehabilitation of acquired brain injury. Clinical Rehabilitation 18, 767-775. Collicutt McGrath, J. & Linley, P.A. (2006). Posttraumatic growth following acquired brain injury. Brain Injury 20, 767-773. Collicutt McGrath, J. (2007). Ethical practice in brain injury rehabilitation. Oxford University Press, Oxford. Collicutt McGrath, J. (2007). Recovery and rehabilitation from brain injury. In Joseph, S. & Linley, P. A. (eds) Trauma, recovery and growth: Positive psychological perspectives on posttraumatic stress. Wiley, New York (in press). Also Wannenwetsch, Berndt. What is Man? That you are mindful of Him! Biotechnological Aspirations in the Light of Psalm Eight. Edited by Ralph Waller, Farmington Papers. Oxford: Farmington Institute, 2004. Also Wannenwetsch, Berndt. What is Man? That you are mindful of Him! Biotechnological Aspirations in the Light of Psalm Eight. Edited by Ralph Waller, Farmington Papers. Oxford: Farmington Institute, 2004.