About Peter Ellis

Retired - chief executive of a children's hospice

Unbearable

It has been 4 years since my stroke and I have been reflecting about my predicament. When I get distressed and upset, I try to find words to describe how I am feeling.  So here I go. My attempt. It feels as if I cannot escape, I don’t know what to do with myself, there is a rising lump from deep down in my belly and I need to run and get away, to find a safe space from which to escape this sense of life being unbearable, and which might be my lot for years and years”    

This evening I watched the programme Caring for Derek (worth a watch on ITV) made by Kate Garraway as Derek her husband survives and lives through the long-term damaging impact of Covid. “It’s just an impossible task that you must make possible every day” Kate says. It reminded me of how I was at the beginning of my stroke (well that is how Duncan described me). The film of Derek, the description of his life and for Kate came across as impossible and harrowing and very much felt like my own experience. 

This made me reflect further that there is much in life that can be described as unbearable. After my early retirement and in my last job, we recognised that the death of a child or young person had a massive impact on the family and the community surrounding them. It is unbearable. Then more, I have witnessed others with the unexpected or even the expected death of a partner which is totally devastating, heart-breaking, horrific and I cannot imagine how that would feel. 

All this makes me feel that in comparison my unbearable seems insignificant. However, it is my reality, and therefore feels unbearable.  When I was a child, life at times felt unbearable. After the acrimonious separation of my parents, I would be terrified, sick in my stomach if I knew they were going to meet and see each other.  Not a good way to start life, and now as I face my final years (I can hear some people tickle me with the words “drama Queen”) it can feel unbearable. My distress causes me to recognise that after my stroke I am not able to do much to even look after myself, such as getting dressed, tying my shoe laces, which are some examples of how I am unable to carry out my necessary daily activities, those that previously, I did not even think about. I certainly cannot do a lot of the other activities I was looking forward to, such as gardening, cycling, piano playing or cliff walking. I cannot even contemplate doing these things ever again. It gives me a huge sense of loss and pain. I have been robbed at the end of my life.

I looked across to Duncan after supper the other evening and said “I am not sure I can bear this anymore”. It was one of those moments when, for me it felt unbearable – not being able to do very much, certainly not what I had hoped for in my retirement. Yet for a lot of the time I do bear it. I have no choice, I have to “get on with it” and as some often say, “suck it up” (by the way, I hate that expression). When I am in the middle of my unbearable I somehow find the strength to carry on. For me the reality of my circumstance can come and go, in waves rather like the experience of grief, thus offering respite.

The other evening, I watched the programme “portraits of the Holocaust” describing the unimaginable stories of those who had survived.  The stories the survivors told were harrowing. Indeed, their circumstances seemed to me to be unbearable. “How can I complain” I thought?  Yet they survived to tell their stories

I often ask why this has happened to me. It feels unfair and unjust.  But there is much I can continue to do. My cognitive skills are in intact and I can use that for my own benefit as well as for others. Yet I must be careful and be honest and not let my natural (positive) personality defend me against my loss and pain.

I am a type 7 in the enneagram, a typology system that describes human personality as a number of interconnected personality types (www.verywellmind.com) According to my typology I have a positive, idealism, radiating joy and optimism (oh goody!), but all of this is there to defend against my underlying need to avoid pain.  So here I am bearing an unbearable burden, but with a personality that tends to see a cup half full, not half empty. Will this enable the bearing of the unbearable? This is the challenge that I face as I look to the future.

Peter

February 2022

Where do I go from here?

My good friend, Val has been talking with me about the tension between my rehabilitation and acceptance of my disability and status. Perhaps this can be interpreted as that I will make some progress towards restoration, independence and freedom, but I need to work towards acceptance of my disability, integrating this within my life.

This is good in principle but I find there is a need (and Val, being a therapist, fully understands and agrees) to allow the grieving process to continue.  Some mornings I wake up and it suddenly hits me again.  I find it can be really painful even 3 years on, the loss and the long-term consequences of my stroke, something that happened in an instant, when I collapsed to the ground thinking “ok, this is strange but I will come round” like you normally do when you feel unwell.  It was a very odd, and frightening, yes a terrifying experience and I did not come round.   It exploded out of nowhere and it smashed my life into bits.  Why?  But why not? Life is complex, there is no way of understanding what can be around the corner, and as we all appreciate, life is incredibly fragile.  Just look what is happening in Afghanistan at the moment. Out of nowhere people’s lives have been shattered and changed without knowing what the future holds. But then this is so true for all of us and especially as we get older, with our gradual decline perhaps exacerbated by some form of disease or life limiting condition. 

We all live with some form of loss and hold grief whether we are ageing/declining or had a dramatic explosive event.  Death, dying, loss and grief is everyone’s business, and my point is that recognising life is fragile, life is to be lived with everything it has to offer, whilst there remains the tension between acceptance and restoration living with love in all its fullness, knowing we are loved and can love. Enjoying life and dancing because whoever you are whatever your circumstances, you can.  

So, as someone said to me the other day, be grateful and give thanks you woke up this morning.

Locked Rooms

I begin by using a quote that inspires me;

“You are so young, so before all beginning, I want to beg you, as much as I can, to be patient toward all that is unsolved in your heart and to try to love the questions themselves like locked rooms and like books that are written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually without noticing it, live along some distant day into the answer.”

(Rainer Maria Rilke – Letters to a Young Poet, 1929)

I am not sure I qualify as young but this spoke to me, with thanks to the lovely Kim Oliver for sending the book to me.  I think it is my emergent strategy.  When I studied for my MBA, one of the concepts that came forward was “emergent strategy” described by Mintzberg (1939), as opposed to a planned strategy 

 As I reflect back on my work (my last job) we spent a lot of time developing the strategy of the organisation, considering the future including a vision and mission with strategic and operational objectives. Many were not achieved fully or as intended, presenting good examples of emergent strategy.  I feel sadness that some of the key objectives, whilst there was some progress made towards our vision this will be lost as the organisation has changed shape having a different focus towards a new vision 

My life has been turned upside down, I have no idea at times what is going to happen next! Grief can cloud so much. It can get in the way of using your situation towards unexpected goals and ambitions. Thus, managing sadness, grief and the sense of loss has to be done, definitely acknowledging it which is very important, but not letting it get in the way. Claude AnsHin Thomas (2004) said “when you discover the liberation that comes with stopping the struggle and becoming fully present in your own life. This is the real path to peace and freedom”. How true is this for all of us.  Now, I do not know what my “fully present” means for me (can any of us understand this without reaching for it), but it noted there is work to do, and I suspect the process will be revealing, healing in its own way. As my good friend Val reflects “there is a balance between acceptance and perseverance.  However, accepting that there is no use in my left arm/hand, whilst tottering along on a weak left leg rather like a snail undulating and sliding (yuk, nasty – be careful now Peter you might be reported for “Gastropod phobia” !). It is so tough and painful both physically and emotionally. My room with the answer might be locked at the moment and my patience and faith will be sorely tested but I will continue in the hope that something good and positive will emerge in the course of time.

A lot of people use the drawings and work of Charlie Mackesy so I am joining in

Peter.   May 2021 

Antique

My lovely physiotherapist, Scott has been encouraging me about how to consider my future.  He offered an analogy: “think about yourself as an antique (“rude” I said), even an antique that cannot be sold at the auctions (even more rudeness!) yet the flaws, the cracks and imperfections are what will be used in the future – the patina I described it as. This reminded me of the Christian concept of brokenness and how we as people can only be used when we are broken vessels (typically) so, wise words from a young man! Another good friend/former colleague, Heather suggested the Japanese art of Kintsugi which illustrates the philosophy that nothing is ever truly broken. This technique repairs broken pottery by using beautiful seams of gold.

I reflected on this and recognised this as perhaps describing the second phase of my life as ostensibly defined by the Franciscan priest and theologian (mystic), Richard Rohr. It makes me wonder whether my physical catastrophe has led to an emotional/mental catastrophe inviting me to enter into the second phase (not expected nor wanted, of course) but it describes a role I could play as someone to use my disability in a positive way, the cracks, the flaws and the brokenness … but oh, the way I see things at the moment, I want to be restored to my former self.  Of course, this is not and will not be possible.  Acceptance is very, very hard.

An image of a small figurine broken whilst decorating. It has been repaired. It remains with a fractured look but can still be of use.

BROKEN

RESTORED

A Question

Some have asked, indeed so have I, what is the point or the purpose of my blogs? Many have said “Well they must be cathartic for you?” The answer is yes, I have found them helpful. I have also been told that some people have found them raw and painful which is not a bad thing if it helps people realise my predicament. But one of the main purposes of my blogs is to help others to have a better insight of a person aiming to live after a stroke. Does it achieve this?  

Please do leave your comments and email address below.

Goodbye to the shoes and waves of grief

Those who know me well will know how much I enjoy my shoes (well at least I used to!), I think men can enjoy them in the same way as women?  Or am I unusual? Anyway, my point is we are beginning to look through my wardrobe, and we were going through all my old shoes. I was hoping I could at least wear some but alas none would fit my swollen left foot. A very brave decision was taken. They were reluctantly all put into a black bin liner and disposed of. It was painful as it represented that part of my life which is now finally over!  I inevitably cried at another loss. 

I find my memory of my losses hit me sometimes unexpectedly, like waves and it can feel immensely painful. The pain appears to emerge from the depth of my being. I have an overwhelming sense of not knowing what to do and how to survive my horrific situation. I have said it several times but the thought of not being able to do what I used to be able to do for the rest of my life is incredibly distressing, overwhelmingly so. I cannot fathom it. The thought of not being able to ride my bike, kneel down in the garden and feel the soil, walk along the beach, feel the sea wash over my feet and feel the sand beneath them, to walk along the footpaths of the Cornish cliffs especially those I remember as a child and which I have visited from time to time since then. The ability to walk into town and pop into the local shops indeed to drive into one of the local cities (Norwich, Cambridge, Bury St Edmunds), and go shopping, to go to Waitrose on my own, oh the joy!  All these things, and many more are not going to be easy to do if at all, and certainly not on my own in the future. Life has changed beyond recognition for me.  Am I going to be trapped inside the house, sitting in a chair reading, reflective writing, watching TV for the rest of my days (I can recite the daily TV schedule for you if you wish!!)? Is this the best it is going to get?

Hey! Stop feeling sorry for yourself (I can hear my mother say!!), but my pain (as I describe it) is there, it is real and I need to have it validated. Yes, I experience physical pain (from my various fractures, my shoulder, caused by the neuropathic pain – the nerve endings damaged by the stroke down the left side of my body). By the way I had another fall on Christmas Eve ending up in A&E resulting in a fractured shoulder (will this ever end?) But it is the emotional and spiritual pain I experience that washes over me on a regular, often unexpected times which feels much worse than the physical pain. I do wonder sometimes if others really understand what it is I am experiencing. But what the heck, what can they do about it anyway? I always think when I experience my grief episodes that there is going to be help at the end of this, that one day I will look back and recount “do you remember when?” I also think life will return to my old normal, but I know that is not going to happen.  I remain in hope that I will regain some form of function that will allow me to lead a reasonable life, but I know it will take a good few years.  My emotional pain increases when I think about this. I had my stroke when I was 58 I am now 60 years old and 70 will soon be upon me!  Time is drifting away, I hope I am table to achieve more before I die!

We are all currently experiencing the national lockdown. This has caused a lot of people serious challenges for their mental health. Depression, frustration and loneliness are all common experiences, but knowing this will one day come to an end helps us to cope with the situation, I wonder if it will make much difference to me? 

Living with disability

From a discussion in my last blog about suicide to now about living!  Recently I have become acutely aware of the confines and constrains physical disability has on my life. Having worked for a number of years with children and young people who had severe physical and mental disabilities I had no real idea of their internal struggles of not being in control of their own lives.  Now I am experiencing all this first hand. The shear frustration at the lack of independence (being in control); privacy and dignity and how often have I had to accept family and friends showering and toileting me – this is all acutely embarrassing, maybe not for them but for me. 

I am now beginning to make good progress towards some level of physical recovery, indeed I am now able to use my stick to walk independently. I can now walk up and down our staircases (with Duncan’s support) all thanks to my physiotherapy.  I attend a super gym facility, a charity set up by an orthopaedic surgeon (Rachel) and a boxer (John or Mr Shouty as I call him!!) the gym is for those with a disability or needing some form of physical recovery. Called Able2be in Norwich.   At this gym I was introduced to Scott Rowbotham (physiotherapist) and a member of his team, Jill (personal trainer) both of them are fantastic – they understand not just my physical wellbeing but also my emotional and mental wellbeing, and how these impact on my physical recovery.  They also both acknowledge my experience and background, thinking of ways in which this can be used.  We have great fun together (believe it or not but I now even look forward to my gym sessions – who would have thought I would actually be saying this!).  One of the aims I have is to increase the movement and some function in my arm and hand so I am prepared to enter the upper limb restoration programme at the hospital for Neurology and Neurosurgery, Queens Square, London, led by Professor Nick Ward. [With thanks to Nigel Love for the introduction].  Whilst I cannot hold any great expectations, I feel I have some hope.  If I can get some form of restoration in my arm and hand it would make a massive difference.  The loss of function in a limb causes huge Limitations. It is a devastating consequence of a stroke. Thanks to Scott I am beginning to learn to walk without a stick (haven’t tried it at home yet!). It is a very wobbly start but I cannot express enough my happiness that this is happening. Suddenly what I thought was impossible and never going to happen again has now become a possibility. When this lockdown is truly over, and things get back to some sort of normality, I feel I will now be able to walk into the Auction sale rooms and look at the items I want to put bids on!

Joy of joys. I am now on my mower again (with a little lift up from Duncan!), another thing I never thought I would do again.

Don’t get me wrong I still get distressed, feeling incredibly sad about my loss but there is a ray of hope as I continue to make progress towards some form of recovery.

I am totally in debt to Duncan for his massive support, love, care and especially his patience with me!

Peter xx

A difficult subject

Stroke and suicide a personal note

As you approach this blog I want to assure you, the reader, that I am in a good place despite what I am writing about. But I want to be honest and true to myself, as Duncan keeps reminding me.

What a tricky subject!  Suicide is often unspoken about and difficult. We don’t like it.  It is an unutterable consideration. People who have had a stroke often feel, depending on the severity, that their quality of life is so compromised that what is the point of continuing to live. There is perhaps a feeling you are too much of a burden and in the way.  Pompili et al state that “stroke is a dramatic event and is associated with potentially severe consequences, including disability, mortality, and social costs. Stroke may occur at any age; However, most strokes occur in individuals aged 65 years and older. Previous research has found that stroke increases the risk of suicide” (Pompili, et al 2014). 

I have become very distressed on occasions. The thought of being seriously disabled, is completely overwhelming, wondering if I will be like this for the rest of my life. As I write I am listening to Songs of Praise and a couple of hymns and worship songs are featured, those I used to play on the piano. I start to cry, feeling immensely sad as I will probably not be able to play again. I wonder, again should I sell my piano?

When I was in hospital I remember a woman talking in a support group, she announced that her favourite pastime was driving her car and if she could not do this again she would end her life and said she was very serious about this. I just hope this was followed up by the psychologist. I also wonder what impact this might have had on other members of the group. This encounter still plays on my mind.

I have, at times, when I am distressed, feel overwhelmed and how life would be unbearable in the future. I struggle with not knowing how to escape and deal with the loss I experience. I wonder sometimes if I would be better off dead. On one occasion, Duncan was at the bottom of the garden and I was trying to contain my distress, I was sitting by the back door and I knew there were plenty of paracetamols in the kitchen. I had a choice, turn left, walk into the kitchen and swallow a handful of them or turn right and join Duncan in the garden. Clearly, I turned right and I am able to write this now. I honestly now feel I would not really want to take this selfish course of action. Those with their clinical/therapeutic hats on – there is no need to start the risk assessment!

Research has shown that stroke patients are up to twice as likely to commit suicide as people in the general population, and the risk of attempted suicide was highest in the first two years after a stroke. Among stroke patients younger than 55, the risk of suicide was five times higher than in the general population.

When I worked in the NHS I started working towards an MPhil (I ended up completing an MBA – don’t ask!!). As part of my study I interviewed the consultant oncology staff I worked with, about their attitude towards death.  I found interesting results. A lot of the clinicians held various views on life and death and this influenced their approach to treatment offered to patients, some would go to the last possible course of treatment in an attempt to rescue the patient but one in particular stood out for me, he stated that he would only go for one round, possibly 2 but after that finish treatment as he believed we “come from dust and will return to dust” but the question remains is the attitude towards rescuing patients. Is offering treatment an attempt to preserve life at all costs worthwhile, if the quality of life remaining is poor?  A lot of clinicians felt they had failed if the patient died, despite all treatment offered. 

I was admitted via A&E when I first had my stroke. I was kept on an acute admissions ward for observation, with a view to a further transfer to a rehabilitation unit.  However, I deteriorated and was transferred to Addenbrokes Hospital for neurosurgery to open my skull and drain the bleed. It is now a thought of mine that I was subject to life saving procedures but sometimes wonder if it would have been better if they let me go.   

There is a piece circulating, via Facebook, describing a new indicator for stroke recognition emphasising the need for urgency to get the patient to hospital to make every opportunity for survival and a good recovery.   The article then makes the point that those who might survive, when perhaps intervention has been too late, might be severely disabled and become “hopeless and helpless”.  This might be true but reading this, as a so called “stroke Survivor” (I don’t like being labelled in this way!), does not really inspire or motivate me now that I have survived. This articles comment makes me feel especially angry as I, for one, intend to have hope and do as much as possible towards my recovery. 

I hope I have been honest in this blog and even more so, I hope it opens up a dialogue about this very difficult subject. It has resonance for me.  I hope you feel able to comment on this subject and open up a discussion in the comment section below. I look forward to that.

A Gym Bunny

So, I am aware that my recent blogs may come across as showing sadness, anger and perhaps a little narcissistic. But, no I am not going to apologise for that – I am done with apologies.  What I am dealing with is utterly devastating. But this time I want to be more positive, even happy!!  I am blessed with a positive, cup half full, personality and this helps me, a little, to deal with my situation. 

So, there are goals and aspirations I want to achieve. I am now attending a gym for disabled people (able2b) engaging the services of a great physiotherapist and personal trainer, Scott and Gill. I am working on trying to walk without a quad stick (a bit scary!) and using a treadmill and fixed cycle (a motomed) to get some cardiovascular exercise.  I do worry about sitting down for most of the day, I don’t want to become too over weight – eating cake and drinking my lattes.  My heart needs to have exercise and a good diet. I have an initial goal of reducing my weight and keeping it down and I am not doing too badly, I think anyway. I do have other goals and aspirations, but that can wait for another blog. 

Every Tuesday and Thursday I go to Norwich to attend the gym. It is a 2-hour session with an additional 2 hours of travel. I don’t begrudge this but sometimes I feel that everything I do is stroke related.  I am not enthusiastic about going, neither of us are, but once the session is over I do feel invigorated and encouraged about my progress; and, of course, it has to be celebrated around the corner with a good coffee! Scott and Gill do push me ( in a positive way) which leaves me somewhat exhausted but elated at what I am beginning to achieve. Onwards and upwards.

A quote from a little book by Desmond Tutu: 

Laughing with God

The audience had a wonderful capacity to laugh… it seemed extraordinary, this gift of laughter in the midst of so much anguish. Perhaps, as has sometimes been remarked, we laugh only, because if we did not, we would cry and cry.

‘forward’, in Nelson Mandela.

How true is that! 

Peter x

A liminal Space

Our lovely Rector Tony Billett, who lives across the road, offers me a talking/listening session once a fortnight which I value enormously.  In one of our discussions Tony provided an illustration:

A woman farmer was dying and her sons sat around her bed and she told them that their inheritance lay somewhere buried in the farm. When she subsequently died the sons dug and dug but nothing was found. They managed to dig up all the ground across the farm.   

However, over the next two years the boys reaped bumper crops from the farm. Then they realised, yes, their inheritance was the fertile ground that resulted from their digging.

Tony described my current position as being a fertile emptiness.

I have been following the daily contemplations written by Richard Rohr, a Franciscan priest and ecumenical teacher, who offers useful reflections about being in a liminal space (the waiting areas between one point in time and space and the next) but for me, the question is where and how this will end?   It can feel at times that you are on the verge of something – but what?  It could be quite unexpected and exciting, but to be in this liminal space means a loss of how you lived before, in physical emotional and spiritual ways, in ways that I have never experienced before. It is unnerving, making you vulnerable and out of control. I just need to trust that I will come out the other side having learned, using the time creatively, constructively, and having a new perspective, or a new reality as Rohr suggests.

Whilst I wish for all of this to end I have an increasing hope that all will be well.

It is Sunday morning and Andrew Marr has just finished (no church of course – all closed up!), there is a focus on the devasting consequences of the current pandemic

Where is this going to end and leaving us in the new normal we wonder and pontificate?  An uncomfortable place to be, a place of separation, a place of fear as life feels we are exposed and in between. 

Later watching Songs of Praise, it makes you realise that gatherings of people and face to face social interactions may be the thing of the past. We do not know what our new normal will be like in fact we may all be online for much of our communications for a long time to come, we just do not know.  When people talk about social isolation and staying at home I might comment “welcome to my world”!