This is possibly the most self-centred blog I have written to date. It is at the core of my fears and wishes for the future and I know it potentially comes at a big ask and at a cost who may have to care for me, hopefully a long time into the future. It related to Dignity,
I pray it is as I mentioned a long way away and I ask for your prayers similarly, but the statistics clearly say otherwise and in the process of planning one of the topics I have had to deal with is my End of Life Wishes. This is truly something everyone needs to think through but for me they are real and urgent.
I have been grateful for some wonderful advice and help from those around me and this week I put pen to paper and wrote the wishes I have been thinking about for a while. They are now filed with the lawyer hopefully to be signed next week…Job almost done.
It of course made me think about what is important to me. Naturally and truthfully I put front and centre the welfare, support, needs of my partner in life, and kids, so that she goes through the process with as much support and as minimal strain as possible in a situation which is not engineered to naturally deliver this.
I did have one overwhelming personal request….Dignity. It is not here written as a fear deliberately…it is something I am going to do my best to protect.
Whether it is egotistical or selfish I don’t know but I truly care about being treated in a dignified and respectful way. That means many different things to different people and in my legal document I have specified it more clearly but suffice it to say that I don’t want see happen what I have seen on too many documentaries and in real life.
A person who has worked their whole life and overcome struggles to raise and provide for their family, who has operated at a high degree of intelligence and had a rewarding career, a person who has a personality, an identity and had a degree of respect for the work and effort they have put in…suddenly they are treated as much less than the sum total of that, are seen as a liability and not seen as anywhere near the person they once were. Worst still they are seen with a sense of pity.
I know my family well and I don’t think for a second that they would allow this to happen but truly it is the fear of fears for me. I know they share the same fear.
It is magnified by the nature of PSP – it plays exactly to that fear – it comes with mental and physical decline to what in effect is often a vegetative state.
So I am a positive person, genuinely and in an article I am currently drafting I talk about the eye opener on faith this process (as unwanted as it is) is giving me. So what am I going to do about it – and this is the question people in such a situation should think through to the extent that they are able and care about it as much as I do…
- I am going to fight PSP for as long as I can and not give into it – I am going to do my very very best to beat the odds and even when the time comes find a way to hold onto every facet I can.
- I am going to try to set up with my wife the care system and support necessary and required to enable me to be treated with dignity and respect and with the support needed.
- I am going to ask for and potentially ask my loved ones to favor the healthcare providers and workers I work with to do their best to treat me in this manner.
- I am going to ask for your prayers to help make it so.
- More broadly I recognise the challenge in Israel with PSP – it is an unknown and I am going to make as much progress as I can to raise awareness of it and help create an environment which can help others and potentially myself. I want to try to make a change for others.
Lastly I am writing about it and opening the issue – it is truly one that many are fearful of and it is important that those involved in their healthcare and support are constantly reminded of it. I by the way don’t blame anyone of those people for any loss of dignity – it is inevitably driven by the overwhelming nature of the care required and I totally understand it, nonetheless I still feel it is important to state and to bear in mind that for many it is truly a priority for Quality of Life alongside many of the more basic fundamentals.
As I so often quote and forgive me for doing so again – Viktor Frankl said it best when he stated:
“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
If he could maintain his dignity, purpose and meaning in Auschwitz of all places, PSP should be no problem. I just have to work incredibly hard on myself and with my family and team to do what I can to make it happen.
