Post stroke emotionalism

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: 

  1. 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;
  2. 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;
  3. 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.

12 thoughts on “Post stroke emotionalism

  1. Thank you Peter for allowing me into your thoughts and deep feelings. The entire blog has been so good to read as it helped me to understand the chronology of your story and to gain your insights at the same time. I’m so thankful too your cognitive abilities are all there with your sense of humour as well!! You are such a special brother to me and I thank God for you. Your struggles with your sexuality have helped me so much in my thinking about homosexuality and the Christian faith. It’s crazy we even have to struggle/wrestle with it! Love you dear brother.
    My tears are falling, yet I feel great hope in my heart for you.

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  2. Dear Peter
    What an absolutely inspirational read. What an incredible journey you have traveled and are still travelling. You have given an insight into your experience which is, at the same time, desperately sad but also full of hope. I pray that you and Duncan will find the fulfilment and peace in your future life together that you so richly deserve. Sending you lots of love and best wishes.
    Judy xxx

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  3. Just read the two very understanding blogs above. We can’t take it away Peter but those of us who know and love you and Duncan can stand by you both on this very challenging journey.
    You Peter are one of the very few people in my long life (nearly 78 years) who I have trusted and Duncan too.Well you know I can never thank you enough don’t you?.
    Lots of love Anthea xx

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    • Dearest Anthea thank you so much for your kind, generous words and encouragement. Your support as ever means a lot and I know you are there continuing in prayer lots of love

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  4. Dear Peter

    We have read through your website, in fact I have read through parts of it several times, especially the Blog posted 13 January.

    The detail of the whole experience of the last two years (which of course we already knew a lot of), presented and read as one piece, brings home even further how very much you have had to endure. Much as we have tried many times to imagine how you have lived with the harsh reality of the enormous day to day challenges, no one really can without living through the same. This website, with such sincerity, has helped a little.

    Reading it also makes us even more aware of the emotional “rollercoaster” of the last two years. When friends and family ask (as they often do) “How’s Peter?” we can never really convey the great sadness, insofar as we can even truly realise the great depths of it ourselves. This website coveys so much, particularly the part entitled “Post Stroke Emotionalism”. I do feel I have to tell you how very disturbed and upset I felt reading the last bit of the blog (so far). However, Jon, I think wisely and thinking about the emotional rollercoaster, has strongly advocated (to me) the final two paragraphs of “Back Home”, written in December.

    Please understand how very important you are to us and to so very many people around you. We hope and pray this website and Blog will inspire many people, both with similar experiences and to those without and to those in a position to make a difference. We equally hope and pray that in detailing your journey, being able to express and share your sadness and anger with us, will in some way help to continue the journey. We await the next instalment!

    In the meantime we send our love, admiration and huge affection
    Talk soon
    Nuala and Jon xxx

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    • Wow! Thank you so very much Jon and Nuala your thoughtful and kind words mean an awful lot. Never did I imagine that I would enter the world of stroke and certainly the subsequent love and support offered. It is certainly a tough journey but one that has elicited so much human kindness lots of love to you both Peter xxx

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  5. Dear Peter,
    What an inspiring read. I have reflected on your blog quite a bit. Thanks for sharing your journey and your honest reflections of the challenges you and those around you have and are facing. Despite the seriousness of the situation it is wonderful to see your sense of humour coming through.

    Wishing you and Duncan the very best going forward. Luv George

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  6. Peter, that is some Blog…says how it is for you and the layout is a joy to follow and read, thank you for sharing your heart and soul with us.
    I like the word ‘scruff muffin’, I’m going to call my next bake of muffins after that…but I’m unsure what to make with ‘flossy knickers’, perhaps some seaweed sheets in miso soup…any future royalties will go to you of course!!…Best wishes from West Wales my friend, Luke

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  7. Dear Dear Peter,

    I had no idea about your journey and your stroke. I send my love and strong encouragement to you and to Duncan. You are an amazing person whom I have admired as long as I have known you – such a warm and positive person full of life. I have read your blog from cover to cover and how strong your story is and how much you have both been through. I send you my love and encouragement – be strong and be yourself.

    We have lived with stroke in our family since August 2016 when my mum had a massive stroke (left brain right side including her speech). I have experienced those early days when family is told to hope for the best but expect the worse. But inner strength, grit and determination meant that Mary wasn’t going anywhere. And neither is Peter! Be strong, don’t beat yourself up and live each day as your best. And know that Duncan and your friends and family love you.

    Be encouraged and be determined. Love and best wishes Marina xxx

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    • It is lovely to hear from you Marina and I especially value your gracious and kind, encouraging comments Thank you so very much I do hope you are ok, well and thriving. lots of love .Peter

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