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.
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.
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?
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!
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.
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.
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”!
“All I have to be is what you made me”, So sings Amy Grant (singer and song writer) as I write this, remembering listening to the same when I was a young person (with thanks to Alexa!). I have been crying most of the afternoon looking out at the garden (which is amazing by the way!!) feeling total and utter desolation and frustration that I am captive in my bed or chair not being able to do any of the things I could be doing and driving Duncan crazy as I try to get him to do some of those things. But you know what he had told me? “you should see yourself as Lord Grantham” – he does not seem to like it when I do though!
Amy Grant – a song
“When the weight of all my dreams is resting heavy on my head and the thoughtful words of help and hope have all been nicely said but I’m still hurting, wondering if I’ll ever be the one I think I am – I think I am; then you gently re remind me that you’ve made me from the first and the more I try to be the best the more I get the worst and I realise the good in me is only there because of who you are and all I ever have to be is what you’ve made me any more or less would be a step outside of your plan as you daily recreate me help me always keep in mind that I only have to do what I can find and all I ever have to be; all I have to be is what you’ve made me.”
Universal Music publishing Group Amy Grant
I still find it excruciatingly painful that I am dealing with a stroke. It is horrific and at times I cannot bear it and wonder if I am going to wake up from the nightmare. Last week I had a physiotherapy appointment and when I arrived it was clear I had been upset. The Physiotherapist then took it upon herself to tell me how I need to accept my situation adapt to the way I live and be mindful of the need for rest and how difficult this will be for me given my previous lifestyle and my personality type. I kept telling her I understood she then kept repeating this message to me and I kept reassuring her that I understood. I could not believe she was doing this. she was telling me what the problem was but she was not providing any answers! Furthermore, she is not a counselling therapist but a physiotherapist who was clearly not going to do much physiotherapy that day! I was not brave enough to challenge her about this. It is incredibly difficult to be honest in a situation where the health care provider has the balance of power in their favour. Later in the car on the way home Duncan tried carefully to be calm and remind me of the messages I was been given are true. I lost it completely. “Stop it just stop it. I know it is true “I get it” I shouted “but will someone please tell me what the answer is!” “please stop going on and on about it” I shouted. “I know I know but please tell me the answer not the problem!”
Now my lovely friend Amy is singing it’s raining in my heart – thanks for that Amy! I have tried to think how I feel inside about my quandary No! it is my complete and intense frustration and my desperate sadness and horror that I might be like this for the rest of my life … why oh why? Why has this happened to me? It actually feels like I am being cored out like an apple ready for cooking! The other day we passed our local train station and then the Screwfix shop (yep Screwfix!) and it set me off again gulping down the tears because I used to enjoy travelling into London riding first class (of course – you get free coffee and other treats!) and I also used to bob back and forth to Screwfix to pick up materials the builders needed to continue work in the house. (and no, the two are not connected Screwfix and trains.) I got home, lay down on my bed for my required afternoon rest which I need to do every day (post stroke fatigue is yet another consequence of stroke.). it was overwhelming again. The intense sadness, pain and disbelief that I am in this situation.
My therapeutic friend comes to the rescue!! I am not sure what the answer is. I will explore some ideas next time… for now though time for hunkering down to avoid spreading the virus and my sadness around!
Empathy is … communicating that incredibly healing message of you’re not alone (Brene Brown)
In recent years I have been a manager and leader in health care provision and in my last post as chief executive of a children’s hospice and through my senior management team I set the boundaries of care including the criteria for acceptance into the service and the quality of the provision for the benefit of the users. I had oversight of the service ensuring it was meeting the needs of the user and the standards set out by the Care Quality Commission (CQC). Whilst the service was small in comparison to any NHS Service provider nevertheless it operated in similar ways. So now I am a recipient of care and the table has been turned and it has been illuminating – from the many discussions with care assistants whilst in the shower, challenging the stroke consultant about goal setting, recognising the need for coordination of services available from community services, which I have found very difficult to navigate, insisting on physiotherapy following my hip replacement (when none was forthcoming), to the attitude of some staff towards me and other patients. So, there is a lot to recount. It has been challenging for me as I was the one who led and provided the care service and now the balance of power has been turned and I am the one who has to receive it.
I have had care and support offered by a myriad of health and social care professionals, the list is long and certainly tricky to navigate. This is compounded by endless appointments often in Norwich which is an hour’s drive away. It is tiring and tiresome, tedious in the extreme when all I wish for is to have my life back to enjoy retirement! Whilst it is amazing to have all this support, mainly state provision, the reality of loss remains. The list of professionals includes:
Epilepsy nurse specialist
Nurses including those on the ward(s)
Health care assistants
Physiotherapists (private and NHS – including two different organisations probably outsourced by the NHS)
General practitioners (GPs)
Speech and language therapist (SALT)
Consultant Geriatricians (can you believe it!)
Mental health service (for cognitive behavioural therapy)
One thing I would suggest to the Clinical Commissioning Group is a designated stroke co-ordinator post (probably a nurse) to help patients certainly after discharge. An excellent person providing such coordination and who has been hugely supportive and helpful is the specialist epilepsy nurse Debbie who has been in touch with both Duncan and me since I started with my epilepsy. She provides advice, regular visits and telephone support as well as liaison with the neurologist to manage my medications which has been crucial.
Whilst in hospital (on 3 occasions) a lot of direct care was provided by health care assistants (or similar titles). Because of their direct contact usually of an intimate nature, this lowers the barrier toward better communication and so often this allows for a full and open discussion. On more than one occasion we had a sing (which lifted my spirits), another a discussion about my sadness and distress, sometimes we spoke about the culture of the ward as well as the training offered focusing on the needs of patients. On more than one occasion I asked the question “so who is the most important person in this building?” Various answers would be given including the manager, doctor until they got it – the patient! I really wanted to add if it was not for the patient there would be no money forthcoming which would mean they would not get paid!! (the wrong emphasis to make perhaps?). I also asked what training they had received about loss and grief in anticipating the need of any stroke patient facing a significant loss and their consequent grief/grieving. I would talk quite freely and openly about how I was feeling.
Here I am being hoisted whilst undergoing rehabilitation
The medical care I received whilst in hospital was excellent and was provided through a stroke consultant team based at the Norfolk and Norwich university Hospital NHS Trust. One of them has been terrific both whilst I was in hospital and in follow up as an outpatient. The quality of his care is in his approach and warmth was very welcome indeed. He has been approachable, and answered questions positively and with reassurance. For example, he explained what had happened when I had my stroke, including the size of it (a massive bleed as big as a fist), that a blood vessel had burst probably caused by high blood pressure over a prolonged period that the recent scans and tests indicated this was unlikely to happen again in the near future (phew!!).
The consultant neurologist has been really helpful in managing my epilepsy, helped by the specialist epilepsy nurse who liaises with him as and when my medication needs to be changed usually after a seizure. I did put him on the spot at my last outpatient appointment asking about my life expectancy following stroke and subsequent epilepsy. I think he was rather taken aback but he did respond to reassure me there should not be any consequence.
Once home and after the early discharge team and first response team discharged me, we were most fortunate to employ a lovely carer who lives just across the road. How good is that!! Sheila (name concealed) and I often have wonderful conversations in the shower and whilst I am being dressed, and despite my initial massive embarrassment about being naked in front of someone the level of conversation has been a very therapeutic experience and Sheila and I talk a lot (not sure if I do most of the talking or she does? Those that know me perhaps know the answer to that one!!). Sheila also does our housework once a week giving Duncan a chance to go out on his own. I of course love the fact that the dust is being dealt with!!
What a blessing she is!
I find a lot of therapeutic care has come through our cats!! (Apologies to those non-cat lovers). They seem to know I have been ill and one in particular lies on my bed and watches me and is quite content to sit close and be stroked whilst I look out of my bedroom window to our wonderful garden. This allows me to rest and reflect. Something I have had to learn to do when I am captive like this.
Barney and Suki my therapeutic friends
Suki little madam!
Richard Rohr a catholic priest and theologian speaks beautifully about the second stage/ second half of life and how this emerges from the first half and is a very different and productive (on another level). I feel I have been catapulted into this stage of life but I find it hard to accept and embrace what this might mean.
Friends and previous colleagues also came to help out
As I sit waiting in the morrisons café (Morrisons? I do apologise but we do not have a Waitrose nearby!). I notice many things one might miss and not appreciate before disability, the kindness of the check-out woman to an elderly customer, the fact the café server is wearing hearing aids within a noisy environment the elderly gentleman in his wheelchair being spoken with by two women who looked like they might be his carers but who kept pinching his chips without asking and the look on his face .The inevitable screaming child (going right through me and my hearing aids!) and mum looking fraught and maybe embarrassed? The café assistant who smiles at you somewhat benevolently perhaps. I feel very conscious about the way some people look at you in a wheelchair or am I being too sensitive? (Do I see myself as someone to be pitied?) So, despite my disability there is a depth and quality to life that can be missed when being busy working and perhaps being in a family juggling many important things, which is how I lived prior to my stroke and which having lost this it is very hard to make the adjustment. I will persevere!
Here I am now my mouth droop has nearly disappeared (but I could do with a better hair cut maybe?)
When I was first admitted to hospital, Duncan was taken aside on two occasions to warn him that I was not looking good and to prepare him for me not surviving. I was completely unaware this was happening and completely oblivious that I might die. This experience has probably left me with a fear it might happen again and certainly there have been times subsequently where this fear has been quite acute and I have had a few panic attacks. This fear leads to feeling incredibly sad that I have not achieved everything I want to do or have potential for, should I die.
Whilst I have been used to thinking about death in my professional career, to face the reality for myself is quite shocking. I am only 59, by the way, so it feels very early, but the possibility of having another stroke which might kill me is a reality.
Val a very dear friend and therapist provided some very reassuring support. She suggested that my near-death experiences would be buried within my psyche and this is likely to emerge in the conscious mind with the feeling of dread that another near-death episode might occur. That made sense to me (a logical male response) and I found this to be very reassuring bringing great comfort and a lessening of the dread I felt.
Whilst perhaps not fearing the dying experience (any symptoms or pain should be controlled – if good palliative care is followed) I feel immensely sad that I have not achieved everything I have planned to do with the rest of my life. I also feel very sad about leaving Duncan other members of the family and some very dear friends behind. I was also looking forward to many projects and other work. I feel deep sadness about all of this, however, the corollary is that I will enter a new place in eternity. My faith has always been a tremendously important part of my life and now I am going to see it come to fruition. Many might have doubts and be skeptical about this but I live in hope that this is not the case for me, rather I will begin again with new freedom and life, or so I hope! This morning I got up out of bed had my shower and dressed all with the help of my carers, Simone and Duncan. I was able to choose what I could wear but I was not able to do much towards getting washed and dressed The thought of not being able to do much of this independently (because of my left hand paralysis), and many other activities for the rest of my life is distressing so maybe I am better off in eternity?
As I continue to reflect on these things, there is more to explore …. watch this space!
I write this in January 2020 whilst feeling so sad, frustrated and angry about what has happened to me recognising I face a future that has been radically altered from what I expected when I retired back in August 2017
One of the well-documented reactions following a stroke is the person becoming emotional (tearful even angry) which is in part due to the brain injury but also by the inevitable loss and grief. I have found that I become tearful quite easily. I will always have some limitation with my mobility and I have experienced a lot of loss; within a few minutes my life was completely changed, perhaps forever. Whilst I am working towards recovery, whether complete or partial, is yet unknown, and it is likely that I will have a level of disability in the future. I need to come to terms with living my life in a completely different way, having different ambitions and different ways of achieving goals and aspirations. I am facing a future that is likely to be constrained in what I can do for myself, reliant on others for even my personal care. and because I cannot do it myself then I will be very frustrated. This is more likely to make me feel depressed, or so it feels when I think about it. I will have to wait for everything as I cannot do it myself I am going to find this tremendously difficult if I cannot do it how I want to do it and I will find this deeply frustrating and I will no doubt rail against it . One thing I am very grateful for is that I have retained my cognitive ability. This, of course, means I am able to think about my future – a future that could be fulfilling despite my physical disability
When I do get upset people do not know what to say. There is no immediate cure or hope of a full recovery so this is my lot. “Put up and shut up’ or so it feels!
There are some times when I think I will be back at work soon, so despite having retired in August 2017 and having a stroke 6 months later my unconscious feels it I will get to my normal state, return to work – jump on the train and go off to London. Then the reality kicks in – this is not going to happen.
I find that I feel more keenly the loss of past friends, relationships that have been important to me, but people whom I may now not have the chance to see again. Now I am in this state of disability and those halcyon times have come and gone forever and my future is going to be very different.
As I reflect on my life, I identify three defining challenges:
Dealing with my sexuality in light of my faith (and those people around me who have very strong opinions about being gay) – which at the time included seeking the possibility of “being cured” and getting married;
Coming to terms with my sexuality and reconciling it with my faith to live in relative contentment and peace after many years of profound struggling;
Struggling with being struck down by serious disability which is likely to remain with me until I die.
Each of the first two phases lasted around 20 years. Do I have another 20 years left to live constrained by disability? There is so much I want to do but my ability to do things has been compromised.
I watch other people going about their lives with full function of their limbs and this is so hard at times – to see people who might be cycling or walking down the road, gardening or even clearing up the house after a party and when I see it from my wheelchair it is so frustrating and difficult I want to throw things around shout and scream “why oh why has this happened to me? So often I see things that need doing around the house and I want to stand up and sort it out but I have to depend on asking others and I quite often get a response: “why are you worried about that?” My OCD gets a real clobbering!!
So how do others react to my sadness loss and tears? Different people deal with it in different ways. Some are sympathetic and compassionate; others do not know how to respond; some tell me how I need to come to terms with it, set new priorities new aspirations and find ways to adjust to my new life. Yes this might be true, but boy I want to yell at them “how dare you?” How can they say this when they can return to their world that does not require adjustment; when they can move onwards and not have to deal with the total devastation and immense impact caused by a stroke (and certainly a massive stroke as I have had). What I look for is purely acknowledgement and someone to listen without giving advice or offering solutions. There is not much anyone can do but there are of course practical ways of helping such as tasks around the house and garden. At one time a group of friends from London came up to stay and spent time in the garden carrying out much needed work. For both Duncan and me this was a gesture of their friendship, love and care to both of us. Having said that it was painful to watch as I sat again in the prison of my wheelchair. Gardening was one of my real joys and my total frustration is hard to contain at times.
A very dear friend came up to stay and we were talking about the hymn “It is well with my soul” written by Stafford who reputedly lost his children and how he was able to express his grief through the hymn whilst acknowledging his faith. My friend started to cry whilst we listened to the hymn. He took my hand and said he could not believe what had happened to me and how devastated he was for me. Of course that really set me off! I so value and appreciate his honesty, care, love but mostly his acknowledgement.