Don't Give Up
So, one day we’re OK, everything more or less as it should be, ‘normal’ for want of a better word. The next day – BOOM – it’s all changed. And things will never be the same again. It’s a lot to take in. I remember sitting in my hospital bed a few days after my brain attack and six hours of brain surgery and thinking, “I should be OK to go back to work in a couple of weeks” and then being unable to pull the bed sheet up with my left hand because I had no grip or control of the hand. The longest I had ever been ill before was for two weeks, so that was my expectation for the timescale to “recover”.
So, for us brain attack survivors, what does “recovery” look like? How do we know when we’ve “recovered”? I see this type of question raised a great deal on various Facebook Groups and on-line forums. In my opinion, it’s an unanswerable question. Why? Let me explain . . .
You will note that I have put the word “recovery” in quotation marks. This is because we will all have a slightly different definition as to what it means. For some, “recovery” means ‘getting back to normal’, or ‘getting back to what and who I was, pre-stroke’. Let’s call this 100% Recovery. If that is your definition of “recovery” then it is unlikely that it will happen. If you’ve had a minor brain attack, have minimal brain damage and have been extremely fortunate, then it could happen that you reach 100% Recovery. Everything back the way it was. Pre- stroke mobility, cognition, eyesight, memory, no headaches, no fatigue, no trouble speaking or swallowing, etc. If that’s the case – fantastic!
However, stroke (brain attack) is a brain injury and causes brain damage. Now, the brain can (and does) rewire so, depending on what parts of your brain have been damaged and to what extent, that may mean you can get 100% Recovery (or pretty close to it). But you are going to have to work incredibly hard at your physiotherapy and rehabilitation in order to rewire your brain. Your brain will not rewire itself. You will need to put a lot of work in to help it to rewire. In short, physical therapy. In the same way that a toddler has to learn how to walk, or how to catch a ball, it is the same for us post-brain attack, but actually much harder as the ‘natural pathways’ in the brain have been disrupted so we need to create new ones. It’s as much re-training as it is re-wiring. However, the emotional and mental damage caused by your brain attack (the anxiety, the depression, the fear, the anger – whatever) is a different ball game.
In my experience, those of us who have brain damage in key areas of the brain (such as, in my case, the cerebellum and brainstem) have virtually no chance of achieving 100% Recovery as defined above, i.e. everything back to how it was pre-stroke. So, most survivors probably need to look at ‘recovery’ as a journey rather than a destination. It’s about getting better than you are currently. Which means ‘recovery’ is an on-going process. It doesn’t really end. Now, that may be an unpalatable thought. It might not be what you want to hear, particularly if you had your brain attack recently. We all like dealing with the definitive. “We’ll be there in two hours”. “This procedure will only take thirty minutes”. “The house will be yours at the end of the month”. No-one wants to hear things like “I don’t know how long this will be for” or “It will take as long as it takes” or “I haven’t a clue”. In his book ‘Stronger After Stroke’, author Peter Levine says “Recovery starts at the end of your comfort zone”. So, if you’re not trying to step out of your comfort zone, your recovery hasn’t yet started. And that is a very difficult pill to swallow.
When all is said and done, it’s about the rest of your life. It doesn’t get more serious than that. We have to keep on pushing. And then push some more. It’s hard to accept but I have found that, as time passes, a new ‘normal’ develops as I adapt and adjust to the new ‘me’. Given the choice, I’d rather be sitting here writing this for you to read (with all my post-brain attack limitations) than not being here at all . . . .
Until next time,
Andrew
“Never thought I could be affected”