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.