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Learning to cope with illness, suffering, death and dying

15/7/2014

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It's exactly a year since our son was dangerously ill in hospital and a second hospital experience this week with another close member of the family brought the memories flooding back. Also my father, who is nearly 90, is in and out of hospital in Australia.These sorts of experiences are both physically and emotionally draining and my experience reminds me of Elisabeth Dunne's piece 'As I grow older' when she talks about the loss of a partner and she questions what learning means in such deeply personal situations. 

'Such experiences are maybe less easily recognised as ‘learning’ in the conventional sense........ I cannot keep building on my experience. I do not think I will be better prepared in the future; I do not have confidence in the learning process. It is an emotional journey, emotional learning, forced upon me unexpectedly; and I have developed as a person because of it. Somehow it gives me a deeper sense of humanity and what it means to be human. This is not the same as learning about [something]... So the question remains: is something that has by far the greater impact on my deepest feelings, my ‘inner’ being, appropriately characterised as ‘learning’. No-one would wish to test me on this learning, but it has changed the ways I behave, the ways I think, the ways I interact with people, the ways I appreciate the world around me..... So, I ask, is this the meaning or the very purpose of learning, whatever form it takes… to enable us to think differently, to shift our perceptions and understandings, and to allow us to grow as individuals and as members of the human race?' Elizabeth Dunne

These words express very well what I have experienced on a small number of occasions in my life - the death of my first wife, the very premature birth and intensive care experience of my daughter's twins, the terrifying illness of my son and recent operation on another close member of the family. They are all situations in which you feel helpless to influence the outcome - all you can do is cope and support others who are involved.  Nothing really prepares you for these situations and surviving one such experience does not give you confidence when it comes to the next because they are all unique in their circumstances and consequences.  They take us outside the world we know and deposit us in a world of uncertainty and fear.It's hard to say exactly what learning is in such situations but it's fair to say that when we have come through we are probably more compassionate, empathetic and sympathetic human beings. Its also fair to say that situations such as these drain your creativity away and all desire to be creative.
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Commitment

9/2/2014

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To commit to something is to harness your own willpower to pursue and engage with a purpose, a cause, a problem, challenge or opportunity. By committing to something you are reducing your freedom to engage with other things. Fundamentally committing to something is a choice - we may feel obligated or coerced but we are still making a decision to engage with something conscientiously and to the best of our ability. We usually commit to something because we care about it and it's personally meaningful and or has deep intrinsic interest or value. Commitment to something is deeply relational whether it is with people, ideas, objects or enterprises. When we commit to something we usually know that it will involve us over a significant period of time.For some things we want to know exactly what are commitment will be before we agree to getting involved but for other things, particularly involving relationships that are most significant to us, we are willing to enter into a commitment without knowing the detail of the obligation. 

Developing something is a major focus for commitment. It requires us to commit time, energy and effort (physical, intellectual and emotional) and it usually involves reducing our involvement in other things. Life is never simple and all the things that are important to us require our commitment so we end up with lots of commitments that jostle and compete for our attention - our families and relationships within them, our jobs, our own interests and aspirations. So everyday life is made up of lots of commitments that connect and span our lifewide experiences. Our commitments are closely associated with what we perceive are our purposes which are ultimately the things that drive us and give our life substance and meaning. By taking on new commitments we are extending our learning ecologies.

These thoughts were prompted by my recent involvement in an on-line 'course' called 'bring your own device for learning' (BYOD4L) designed and organised by Chrissi Nerantzi and Sue Beckingham. When I reflect on the experience as a development process  commitment seemed to very important - perhaps because by joining the course I was adding to my existing commitments and that required effort above and beyond what I was already doing.

The course required commitment to sign up, familiarise myself with the design and expectations, engage with the resources and the learning opportunity (in my own way), and try to record my own learning process and what I think I gained from it. The commitment to try and apply what I learnt and to keep trying even when something didn't seem to work and overcome the inevitable barriers of using these new forms of social media for someone who is not particularly adept. 

During the course I was conscious of juggling this new commitment with my other obligations - like the two days I look after my daughter's twins and various work obligations and I was conscious of the opportunity cost in engaging with technology initially to be competent and confident in using it and then to apply it. I had several instances during and immediately after the week when what I tried didn't work and I felt frustrated and demotivated because I hadn't made the progress I had hoped for and these feelings of negativity had to be overcome.

I was thankful that one person tweeted that they had had trouble with an app. I often have trouble trying to make things work and this aspect of learning often gets glossed over in the enthusiasm for the technology. The things I valued most - that encouraged me to persist and therefore facilitated my development were: 
1 The resources. Sue's collections of tools and the introductory videos are a great resource that I have embedded in my own website for future use. 
2 Examples and illustrations of the use of the technologies.. these were great in showing what could be done. In particular some of the curatorial tools like scoop.it and paper.li. which I have tried to apply. 

It was also great seeing the enthusiasm, commitment, teamwork, care and attention and personal support the facilitators gave to the process and the people in it. A real lesson in the energy, passion, care, dedication and expertise necessary to make these sorts of learning experiences work. And hopefully I could use the experience and insights to design my own on-line learning experience. I was particularly appreciative of the fact that I was able to navigate through the resources and prompts in my own way. There was a structure but no one forced me to follow the linear pathway. I could chart my own 'course'.

Offline I had some good conversations with my son who managed to spend a bit of time looking at the resources and tuned into the twitter conversation most evenings. So it achieved that objective. 

I did try to reflect on my own thinking and practice in the contexts of my own circumstances and I set up a dedicated BYOD4L blog for this. 

The proof of learning is in the doing. It's one thing to know how to do or use something but another to apply that learning. Since the course I have continued to use paper.li and develop 'lifewide zine' a twitter-sourced companion to Lifewide Magazine. I also felt more confident in using twitter and I spent more time on it. I felt that I understood it much more. I taught myself how to embed twitter feeds and tweet buttons into our websites and then populated resources like e-book chapters and magazine issues with tweet buttons in the hope that when people come across them they will retweet.

I also 'played with' paper.li  With Chrissi's help I set up a Lifewide Zine as a twitter-based companion to Lifewide Magazine. There is still lots to learn but I got over the initial hurdle. I also continued to develop my use of explee animation software creating and embedding several animations in our websites.

These three tools - twitter, explee and paper.li have opened up a whole new area of communication for me that if I had not committed time, energy and effort would have remained hidden. The value of commitment to personal development is in being able to do something I couldn't do before and in this way improving my ability to continue working with my higher purpose - to promote lifewide education.

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The Gift of Life

15/7/2013

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This is the first time I have felt able to record my thoughts and feelings. It's been a very difficult even traumatic few weeks for me and my family as we have had to cope with the ordeal of a member of the family becoming very ill a long way from home. My wife bore the brunt of it and has stayed close by him throughout. It has been an emotional rollercoaster and we have had to cope with the situation and deal with the worst imaginable scenarios. Thankfully he is getting better although progress is very slow. The experience has taught me once again that good health and mental, physical and emotional ability are just the most important things in life and how much we take them for granted day to day until they are removed. Its revealed an aspect of my wife's character and strength I knew would be there but which can only ever going to reveal itself in such situations. It's revealed the love and concern of our family and close friends. I think the ordeal has made our family stronger. It's given me experience and insights into life in intensive care something I have never experienced before and the enormous dedication, professionalism and kindness of clinical staff. But also seeing life on the wards and experiencing the frustrations as a parent of not being able to get the care and attention you need when you need it for your child and seeing just how much you have to fight sometimes to get the attention you need. Coping with the uncertainty of not knowing what was causing my son's illness was one of the hardest of things until you realise that it's almost academic and the most important thing is to treat the illness by every means until there is a positive response. Google also played its role in provided much needed but not wanted information on the possible conditions and outcomes we were dealing with.

I know the experience has had a significant impact on my feelings - at times totally drained of energy and numb while at other times overjoyed and everything in between. At the moment I am just thankful that we are where we are now and not where we were three weeks ago and I appreciate all that so many people have done to help him and us through the ordeal.

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Significant personal events

26/4/2013

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My daughter and her children are a very significant part of my life. This week I did my Tuesday child care looking after the twins and also Wednesday afternoon while my daughter went to the dentist.  I love my twin grandsons as if they were my own children.. My wife said this and I realised it when she said it. There is no doubt about it I have bonded to them and them to me in a big way.

They are approaching their first birthday at the end of May. It's been a long, difficult, at times gruelling and emotionally challenging year for my daughter who has had to cope with her three children by herself much of the time. They were born 10 weeks early so developmentally they are really only nine months old. In the last few weeks Archie has learnt to sit and this has liberated him so that he can do occupy himself so much more.  His development is in stark contrast to Alfie's who actively resists sitting... In the last few weeks we have become acutely aware and concerned of differences in his development compared to Archie's. We have always been conscious of the consultant's diagnosis before they left hospital that Alfie's brain scans showed signs of damage - probably because his brain was starved of oxygen at some point. Something that I think is not unusual in babies with such low birth weights. We have lived in hope that everything will be okay but we think we are now seeing the effects of this damage in his development. For  the first time this week I googled to find out something about cerebral palsy. The information was both reassuring (that there is help and the condition doesn't get worse) and distressing (depending on the degree it can be quite disabling).  There are a number of signs that are pointing to this condition for example one of Alfie's arms seems less active than the other,  he throws himself backwards when sitting or standing and he often  goes into a trance. I know my daughter and her husband  are very worried as I am for them and Alfie. The physiotherapist came today and she is going to arrange for some tests for Alfie to check on epilepsy and his cognitive functioning.. I tried to reassure my daughter that the testing is for the best as the earlier any discoveries are made the quicker treatments can be put in place.. But my heart bleeds for them as parents. But she is a remarkable woman and Alfie is fortunate to have her for his mum.. She will I know do everything she can for him and I/we will try and support her and them as family as much as we can. We will not give up hope that his life will not be so limited and I will not dwell on all the potential scenarios and imaginings of of what lies ahead. Instead I will remember the wonderful smile he gives me when he hears 'Hello Alfie its granddad!' and the way he rests on my tummy when I cuddle him. What a funny mix of joy and sadness life can be.

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Families are emotional places

27/2/2012

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Originally written 04/02/12


I find that families are definitely the places where emotions are experienced the most. Perhaps because this is where our most significant relationships are. This week has been a bit of a roller coaster as simultaneously, in two different family spaces I have been hit with events that have both elated and disturbed me.

Thursday lunchtime my daughter Jodie called , a bit breathless because she was walking but she is expecting her second child and she had just had a 3 month scan and she wanted to tell me her news.. which was she was having twins - identical twins!! To say I was shocked (gobsmacked) is an understatement. There are just

It was only a quick call but its one of the moments when you feel your life will not be the same again and you start to imagine the implications, as I did over lunch with Taraneh (Jodie's step mum) who was just as excited as me..  That evening Taraneh spoke to Jodie and she told her that the person doing the scan had seen a possible abnormality..I felt totally deflated as the consequences flashed in front of me and thoughts of how my daughter must be feeling - she has an anxious three weeks wait until the next scan.

On top of this I also received the news from my sister in Australia that my 87 year old dad is likely to be very ill with lung cancer. He's always had a bad chest - bronchitis in childhood  and emphysema in later life but somehow he has soldiered on. The move from Lancashire to Australia with my five brothers and sisters in 1972 has also helped as has his 25 years of retirement in the beautiful seaside town of Narawallee on the south NSW coast. I always knew that one day I would get a phone call or something like this would happen. I spoke to him briefly and he seemed quite cheerful  reminding me that he was 87 and he'd had a good innings.. He is going to talk to his GP tomorrow.

So its been an emotional week with all sorts of emotions churning around and I know these will influence my decisions about what I do.
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    Purpose

    To develop my understandings of how I learn and develop through all parts of my life by recording and reflecting on my own life as it happens.
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