Don’t tell us that please!!

Last week was the European Stroke Organisation Conference in Prague, you can catch up on this via their Twitter feed @ESOstroke.

It was the third time they have run this conference and I found it as fascinating as ever. Thanks to the constant twitter feed from @signagainststroke I was able to feel very much part of it.

It touched on many different aspects of stroke, research, facts and rehab. Some figures I personally found quite shocking; although I’m fully aware of depression levels following stroke. I did not realise just how high the suicide rate following stroke is.

Whilst talking of shocking, something else it did bring home was that professionals still chose to talk of ‘windows of time’ for our recovery, as I understood it, basically still putting a cap on recovery time. I find this so disturbing that even as statistics change and there is more evidence of plasticity working, more of us talk of how our recovery began at different stages, often after the time we were told there would be no further improvements. This limiting language is sadly still believed and quoted to stroke survivors and their families.

Language I believe is powerful it can ‘kill or empower’ our route to recovery. Then as I use the word recovery, that too may be a word that some, like me, really value and work with and others perhaps prefer a different word. When I say a different word that is because it has been questioned and we must use the word that best suits us and motivates us. From the Twitter feed, it has become very clear that far more people than I was aware of – and I thought there were too many, have been on the receiving end of language to do with their recovery, that could be potentially limiting and upsetting. I mention this in my book in the chapter – ‘The Brick Wall’ – I almost gave up.

Following stroke we have accepted we do not return to our ‘old self’, we become a new version of ourselves. But we are still the same person deep inside, we have moved forward and in my mind recovered from the stage where we had to be washed, dressed, fed, lifted in and out of bed. I believe we have and are still recovering. We are improving all the time. We may not be able to do some or many of the things we used to do. I’m no longer able to drive, work or enjoy all my sport. That said we may have adopted new hobbies and interests that we had not done before. I now paint, I’ve published my book to help fellow survivors and their families, I have been given the opportunity to help many survivors and I do talks to help raise awareness in the hope some strokes may be prevented. Prior to stroke, I did not have the opportunity to help people in such a way.

Please feel free to comment on any negative language or comments that have experienced and as a result, have had an impact on you post stroke.

2 Responses to “Don’t tell us that please!!

  • Sas, thank you so much for putting words to the frustration I feel about the predictions regarding my future prospects. They come not only from my physicians and therapists but also from friends, relatives, co-workers, etc. My stroke occurred over two years ago, and went through many things you are recalling above : complete dependence on others for daily needs. With time, many of those deficiencies have improved. Many persist. In both cases, however, there is no question in my mind that I am no longer motivated by attempting to be my old self like many around me are hoping for and expecting. As soon as I came to that realization, I have made massive strides both physically and psychologically. I am a surgeon. So my coordination, cognition, and technical skills are all important aspects of my work. It is all I know . But patient safety and quality care are paramount to me and my deficiencies potentially will hinder me from performing my job the way I think it should be done. I am at a crossroads so to speak because my colleagues and my disability insurer don’t seem to understand my ‘invisible impairments.’

    • Hi Chris, Many thanks for your fantastic feedback. It is fabulous to hear how well you are doing, and what a positive attitude you have, which is a huge part of your success which I am sure you already know. It is sad yet all too common that the ‘invisible impairments’ are misunderstood by those around you. This is one of the things I talk about and hope to raise greater awareness of. My book is now a free download and it is my aim that it can eventually be available for all on every neurological ward, but equally, I would love for medical students at University to have to listen as part of their course, to again understand what we have to deal with. Just because something is not visible or a person looks now like their old self DOES NOT mean all is well and that difficulties have resolved themselves.
      Another huge issue within this category is fatigue, if this is one of the ones you struggle with, I ask your colleagues and disability insurer to take the time to read and understand the huge differences between someone being tired and neurological fatigue.

      Regarding you being at a crossroads with everything you so clearly, honestly and logically mention you are only just over two years post stroke, so please be kind to yourself and don’t rush things. Two years feels absolutely ages but in reality, it is not. As you know medically, with what you have been through, how far you have come, it is not. Please learn from my mistake and do not rush things.
      I could not wait to drive and I was determined to regain my independence and prove people wrong, I tried. To cut a long story short, mentally I was not up to it, it made me unwell and I have now had my license taken away.
      Take a look at some of my previous blogs and hopefully if I remember correctly at least one may help people around you to understand some of the cognitive, other ‘invisible issues’ we have to navigate regularly. Also, contact Different Strokes and ask if they have information as they often have very good fact sheets.
      Also please feel free to ask colleagues to contact me or download my book from my website or the Sign Against Stroke website.

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