I have been asked by people very close to me what are my thoughts on dying and some have suggested that I write on the subject. After some consideration this seemed a good idea although I am very concerned that such an article will upset some very dear and loved ones in my life.
This is not my intention I have written this article to help these loved one and hopefully you understand what I am thinking about, ease you mind that I am not frightened by the prospect of an early death and to help me think through and get a better understanding of my thoughts, fears and emotions.
To these loved one and to you all I can say is that we are all mortal and all face this eventuality, in my case I have been given the benefit of early and real warning of my mortality and some would say the gift of writing. The writing is becoming a practice similar to meditation and I find it very helpful. I realise that the awaking process goes beyond words but this is simply the start.
With this in mind I trust that what I have written, which has been done with much consideration, love and hope in my heart is as helpful to you as much as it has been to me.
Dying for me and my loved ones is not a familiar path in our memories and hence we are learning as we go. We have some scratchy philosophy, a little experience and a big bag of love.
So the aim is to complete the philosophy and the experience before the we empty the bag of love!! This article is part of that path, it helps to build the philosophy and talking about death is part of and adds to the experience.
It is useful to state that at this stage of writing, death is not imminent and there is a possibility that I will have many happy years but there is also a real chance that the treatments may fail and death becomes much more an immediate reality. So the old saying 'Prior planning prevents piss poor performance' is a useful guide as is the continual warning from the clinicians that melanoma is highly unpredictable.
It should be clarified that when I say 'we' I am generally referring to Deb and I. Deb is travelling this path with me on a daily basis and we discuss and agree a whole range of issues. Deb is a great loving and stabilising influence who makes a very significant impact on my life, for this I am eternally grateful although at time this gratitude is hard to see..
Regarding talking about dying it was decided some time ago that the best approach was to be very open about the situation. At one stage I was 'gilding the lily' with my children Renee and Dylan and to some extent with Debbie and also with close family members. This didn't work and it wasn't appreciated so it was decided to be open and honest with anyone who cared to ask.
We try not to initiate discussion about dying as some people get a bit scared by it but we do encourage people to ask.
I am finding talking and writing about dying healthy as it helps me think it through. I had serious asthma as a child so I have been thinking about dying from an early age. Mind you I don't have any startling revelations to pass on, which is not a lot to show for a lot of time gazing at my navel.
As you would expect the closeness of death to us is very much a function of how I am feeling. When we have a string of good days and I am feeling positive about the treatment death fades into the background. However when there is a string of painful days or the prognosis is negative then we feel death is much closer and much more real.
I find this waxing and waning of focus very interesting as it supports my notion that we don't want to think and talk about death and we only broach it when its imminent. This I see as a cultural influence where death is not discussed and when it is, it is either left to the 'experts' IE doctors , clinicians, spiritual advisors or priests. When the common person discusses death it is generally limited to the specifics of the case, time, place cause etc. We are generally not encouraged to look at and feel death like another part of this experience we call life.
It seems like we happily live our life and when death approaches we quickly move to thoughts of what happens after death. Will we or will they go to heaven or hell and what will it be like, will it be a big void, will I come back, if so as who or what. The list of questions are endless and it seems to me most of the answers are speculative at best and bizarre at worst.
Regardless of individual beliefs on an afterlife or otherwise this approach appears to me to completely step over the experience of death. This common approach leaps from being alive to being dead and completely ignores the transition, that is, the process or experience of dying, the actual experience of dying.
This is the bit, the dying transition that I am interested in what happens after death I think is largely out of my control.
It will be what it is, nothing more and nothing less.
To digress for a moment I am reminded of an old story of a black man and a white man arguing over is god black or white.
Obviously they both argue the case for their respective skins and eventually run out of arguments and the discussion degenerates into simply stating positions 'he is black-- he is white'. This is going no where. So the white man suggest that they ask god himself.
The black man says ' how are you going to do that?'
'Simple' says the white man who puts his hands to his mouth and calls 'Are you there god?
The heavens open the clouds part and a booming voice says 'What do you want?
The white man say 'Are you black or are you white'
Again the heavens open the clouds part and a booming voice says 'I am what I am' and the white man says 'There you are it proved – god is white'.
The black man is flabbergasted and challenges in the most strongest terms and says' How the bloody hell can you get from a simple statement that I am what I am to then arrive at the conclusion that god is white?'
The white man says 'Well ,if god was black he would have sad I is what I is'
If I still exist albeit in another form I have absolutely no idea of the nature of that existence and hence what control I may or may not have. Thoughts of control are highly speculative at best.
But back to serious matters the dying process.
All this 'after life' question of course assumes that there will be any experience as we currently understand “experience”. I know in this current experience I am going to go there one day or another and my approach is I will worry about it at the time (assuming time exists that is). This is the point where the old truism of 'prior planning prevents piss poor performance' looses its relevance for me.
Our common understanding is that death is like being born we are not necessarily equipped to be conscious of the experience. For me the birthing process memory is a bit late for me to recall but I plan to experience as much of my death as I can. Its sort of like I have paid for it so I am going to bloody well enjoy it.
The death experience may be long or it may be short, it may have great clarity or it may be a haze, it may be full of fear and loathing or may be a very loving experience. Again I think the experience will be very much dependent on the attitude I and loved ones bring to the occasion.
Obviously I think we need to prepare because otherwise it may be like getting in the taxi after a big night out, we know we got in and we know we got home we know we had a meaningful conversation with the driver but we do not have have little if any experience of the ride.
For me, when death is close, the feeling is obviously new and when I can maintain concentration I obviously start to get feelings that I am not familiar with. It difficult to name or describe these feelings because of this very reason, the feelings are new to me. Obviously there is fear and loss and loneliness. But there is also intrigue, wonder, a calming sense of release and a feeling of completion. Hopefully I can be more descriptive as I get closer
Once regrets of past indiscretions are dropped and future hopes are put aside the present becomes much more real I am finding that the closeness of death brings life and love into a sharper focus because I am largely happy with my life to date and the delusion of endlessness or immortality is fading away.
To some extent its like that feeling you experience when you realise the summer holiday is about to finish. Its time to start packing, you realise that you didn't quite get all the planned things done and there isn't enough time to go. You then suddenly realise that you can beat yourself up over what didn't happen or start making plans for the future or you can open that bottle of wine and sit in the sun with the loved ones and simply enjoy the experience of these last precious days.
All this can be either a dreadful experience or it can be refreshing; it depends on your perspective.
I am trying to embrace the feeling of closeness to death and wring it dry as I know it will not last long and I want to explore it as much as I can, without being morbid and without putting things off. I know that I cannot fully explore it until it becomes actual so its a case of getting close and moving away only to come back and explore it again, knowing that one day I will consume the complete experience.
I doubt that I can complete the writing project in totality, sorry about that in advance!
Unfortunately often when the conditions are such that the feeling of death is near I often drop into a hole of 'I don't want to think or talk'. This is a problem and I need to find the energy to stay with the exploration otherwise I waste the opportunity.
I don't think I am frightened of dying. I see it as quite natural and you can't live without dying. We are born, we live and we die. Its a very well worn cycle. As they say no one gets out alive, but this is a philosophical position. I am yet to get there, hence I don't have the complete experience to write about.
The only deaths I have witnessed have been elderly and their passing was very peaceful and I am sure not all deaths are so. I want to talk about death with others who have more experience and hopefully this article will open up some of those discussions.
One of the many things that confuses me is when will I know that death is imminent. In my case I think it will get to a position of nothing more medically being able to be done so then things will become more real as I move into palliative care.
At this stage of writing palliative care looks a long way off but then we are also told that melanoma is highly unpredictable. So its wake up alive and take it a day at a time.
I still recall the response of the Doctor who first looked at the primary melanoma site he said and I quote 'Terry, f****n hell this will kill you'. My mental preparation started immediately after that consultation and continues with this article.
My immediate concern is for my loved ones and being open I think is the best way to help then come to terms with my death. The concern here is that their grieving does not become a problem for them, both before and after death. I think that if they know that I am at peace and accepting of death then this hopefully is the best way of preparing them. Talking about it and having the chance to sit, discuss, laugh and cry about it I believe is very healthy.
I know I am not responsible for the happiness or otherwise of others but if I can manage to reduce their pain then I want that to happen.
As I tried to say in the web piece 'The Other Path" the road for Deb is particularly hard because her feelings are often given a very poor second place and she can often feel guilty for speaking of her pain. She feels she has no right but this is not true. As is the way with pain and suffering it often manifests itself in strange and petty ways. This only adds to the difficulty for her.
Sometime she does not speak of her pain and holds it inside. Thankfully this is not often as she is a strong lady who is in-touch with her feelings and she very soon lets me know that all is not right. When this happens it's our opportunity to talk, cry and learn.
I know her pain is real but I often struggle to communicate this understanding in a timely manner. Sometimes I am a bit slow! and I need to get better at this.
Deb has to deal with the day to day and hour to hour changes in my physical and emotional condition and we are not even close to the pointy end yet. Her path is very difficult and ultimately she will face the grief of being alone, that is without me. It is easy for me, I won't be here but she will need to move on as will all other loved ones.
Deb and I are not good at all this yet but at least we recognise the problem and talk about it and continually work at using this to make our relationship stronger.
It is also critical that my children, their partners are comfortable taking this journey with me.
I have said much about my understanding of Deb's experience. It appears to me that much of the loved partner experience may also largely apply for my children and their partners. However I also see additional impacts.
This disease has the potential to rob my children and their partners of the potentially wise and often crazy old ancestor who can at times be helpful but can always be depended on for a laugh or a good cry. I feel significant pain for this loss and hopefully this writing and other things will go some small way to addressing this particular suffering.
Its not just all about me, partners, children and their partners, siblings and close friends are just as important on this journey and we invite them to be a big part of the trip.
But there are also specific fears for me and I will try and express them in this article and how I am trying to deal with them.
I am most fortunate that Deb wants to walk this path with me and to learn together. Many people are not as loved as I, and I acknowledge the privilege of being with such a strong loving partner.
There is the fear of the impact on Deb and her family but fortunately they are very close and I feel sure that they will close around her, protect her and support her, Deb will be their focus. This is yet another source of comfort for me that Deb will be in good hands. I also feel that my children and immediate family will provide Deb with lots of support.
Then there is the privileged of having two exceptional children and their exceptional partners. I know they are always there for me and will be of great comfort when the going gets tough. I am concerned and hopeful that over time they will be able to recall this experience with love and joy.
This may seem a bit strange but recently my 95 year old father died and without going into a lot of detail his passing was a loving and joyful event as was my mothers death some five years earlier
While both deaths were sad because Mum and Dad are missed and there is much I wish I could have told them when it was possible, it was their time to go and I am glad that I amongst other family members who were able to be there as they died. Of course I miss them but as my sister said she does not want them back which is the mature recognition that we all have to die at some point. Grieving is good but we all need to keep experiencing the joys of life and not get stuck on one singular event. This is my wish for Renee, Dylan, Shane and Pernille.
I have a fantastic brother and two sisters who are also there whenever I need them. Then there are some exceptional friends like Gavin, Sim and other close relationships many going back lots of years who I know I will be able to depend on. Over the years I have been exceptionally fortunate to have been surrounded by and continue to be surrounded by a great family and friends.
Add to these facts that I have had a very fulfilling life to date and have done much of what I have wanted to do, what ever that was.
This is not the tragedy of a young person suddenly and unexpectedly dying without the time for them or their loved ones to prepare. We have notification of the impending outcome and hence we have time to prepare. It should not be a surprise to anyone.
At this stage I am not spending as much time with or sharing my feelings with my children and others as much as I should do. This I need to address. Notification of the consequences is most important and we must use this time wisely. No point is burying the head in the sand, no point in grasping at false hope. It is what it is.
We go into all scans with great hope and often have our bums ripped off but we are learning to roll with this and enjoy the time we have. We accept the reality that it will get me in the end and the most important question is what to do between now and then. We are working on living with the build up of hope and the effects of bad news and we are getting better with accepting that hope is not a good use of time and bad news is simply information to be used.
If you closely examine this question ,of time and what do we do, it is the same question for all people. We only have now and the only question is what do we do now? The difference here is the realisation of mortality
The questions of how and where are also very interesting. To me when I look at these obviously I want to be comfortable, in comfortable and loving surroundings with people I know and love. I don't want to be in pain and I don't want to be out of my tree, I want to be aware of what is happening.
Deb would like me to be at home and I would like this also but there are many practical and potentially medical considerations to be taken into account so we will see.
I think this list of wants is reasonably universal and I am fortunate in that given my circumstances wishes will largely be available to me, so no great worries there.
But, there is a much bigger question here, I know that I will experience the powerful emotion fear. It is bound to arise and hence the question of how will I deal with this emotion. Again I have no experience to draw on so only philosophy, analysis and thoughts to guide me. I am sure that my good Buddhist teacher and friend Sexton will advise practice and I know he is correct. There are many form of practice, sitting, meditating, reflecting and writing. I am finding writing a most useful path.
Back to arising fear, if the situation is that I am severely medicated or have drifted into a semi comatose state then fear is unlikely to be present. Or if it is, then I am unlikely to be aware of it and further its unlikely that I could deal with it from that position. Therefore it will be as it is, in this situation I will have no control.
If I am capable of being aware of fear arising I have but one choice which is the same choice we all have with arising emotions. We can give into the emotion and let it take us wherever it wants to go or we embrace the emotion and see it for what it is, that it is simply an emotion and we can choose what impact that arising emotion has on our equilibrium.
So when fear arises I know that if I let it run it will rob me of the very thing I am trying to achieve and that is to savour the moment with the assembled loved ones. If I let the arising emotion of fear gain control it robs the assembled loved ones of a peaceful loving memory and perhaps a learning experience. Letting the arising emotion have control does not appear to provide any positive or skilled results.
So fear and hanging on provides me with no benefits nor does it help the assembled loved ones. Hopefully I will see fear as Mara ( A Buddhist term for the devil or evil or an unskilled thing) and dismiss it, maintain control and focus. I will want to stay with the love and the experience.
That's the plan anyway.
Then there is loss of control. When I ask the question do we have control ,the only answer I see is we only have control over our response to our circumstances and the emotions that are arising in us.
The degree of control is a function of how much practice we have done. Its a bit like any other skill - playing a game, playing a musical instrument or doing the right clinical thing at the right time - its all practice. Practice brings familiarity, dexterity, confidence and accomplishment and these I see as the critical elements of control. We only have control when we know what we are doing otherwise it pure dumb luck if we get the skilful outcome.
How we respond is our choice and those choices colour our experience of this thing we call life. Again great philosophy but can I do it? Only one thing I know for sure is 'we will see'.
Then there is the question of control over what is happening to me at the various stages as the disease progresses. So far we have been happy for the clinicians to push, poke, cut and provide various drugs largely without resistance. We have always questioned and discussed options in an unemotional way with the clinicians and have been satisfied with their responses. We have pushed the clinicians to tell it as it is and be up front with us and to say openly to us when their expertise can go no further. So far so good, we have had excellent clinicians.
Its important to remember that these clinicians are also humans with the same fears and limitations as us. On an almost daily basis some of these people have to deliver devastating news to their patients. I suspect that this task must cut away at their hearts bit by bit because not only is the message they carry very painful for the individual but it is an admission that their profession is less than perfect.
Thankfully most of us do not have to regularly admit our humanity and limitations in such a raw way to relative strangers.
With this in mind I think it is important to give the clinician permission to tell you bad news and its acceptable for them to admit that their profession is still evolving. It is important that they know that you understand and you are accepting of what they have done and the limitations on what they can do.
So what I am saying is that I think that the relationship with each clinician is central to having some control of what is happening. I think the situation is only out of control when you don't understand or appreciate what the clinician is trying to achieve. And further the clinician does not feel trust and openness in their relationship with you.
How will I feel if or when personal control is removed. I watched my parents loose that control, the indignity if being lifted in a harness by a machine, placed on and off a toilet, your bum wiped, showered and fed. To live a half life dependant on tubes, bottles and machines. I don't want this if the result is simply waiting for the next indignity.
But if the indignity allows me to still enjoy loved ones and still explore the experience of death and other feelings then I will happily accept this loss of control.
To try and sum up this control question I am not sure we are ever in total control of anything but we can try and influence events so as to get the best results for all involved and know that you have the right to ultimately say no and let nature take it course. We do have control over how we respond to circumstances and this degree or otherwise of response is a direct function of practice.
Having a trusted loved one by my side who knows what I want is one of the best influences I will have over 'control'..I am sure some of these words will quoted to me just prior to being sent to the naughty room for letting the arising emotion have a run.
So to me the answer is the embrace the loved ones, feel the experience, reject the negative emotions, gracefully accept the offered help and try and enjoy the trip.
Dying is a bummer, living forever has a boring edge so I think its all about the trip right up to and including the end, every good movie has a great ending!