A large part of the reasoning behind this blog is to raise awareness of the fact that strokes exist, to explain what they are and to make people aware that there are 100,000 strokes each year in the UK - that’s one every five minutes.
But the largest reason for doing it is to explain what it’s like to live every day as a stroke survivor. When people ask what I do, I always say “I scare people.” That’s partly because people do sometimes need scaring into realising that this ‘life-changing event that will always happen to someone else’ could happen to you today. It’s also because I want to dispel the ‘you don’t look as if you’ve had a stroke’ myth.
Because I admit that on the surface, I don’t look as if I’ve had a stroke. I walk with a limp, I use a stick because my balance is shot to bits….and that’s it. Only it isn’t ‘it’. I wrote in my last post about the joys of stroke fatigue, the all-consuming tiredness which can stop you functioning for hours, days on end.
In this post, I want to look at sound, so to speak. My stroke and subsequent brain damage has left me with an extreme hypersensitivity to noise. Too many conversations going on in one room, loud supermarkets, the television turned up too loud, screaming children……they all leave me feeling as if someone is taking a sledgehammer to what’s left of my brain. And when that happens, I’m liable to lash out, either verbally or (much worse) physically.
It’s why I now prefer to sit in silence whereas, pre-stroke, the TV or the radio or some sort of music was always on. Yes, I feel as if I’m missing out on things that other people enjoy. When friends excitedly tag me into social-media posts about the latest release by this or that artist, I’m not as anxious to go and seek it out as I used to be. That’s because my brain can no longer cope with 90 minutes of music playing. It (and therefore me) would rather sit quietly with a good book or a newspaper.
Pre-stroke, writing this blog while listening to the radio or TV would not have been a problem. Now, I have to sit in silence to allow me to concentrate.
This, of course, can be difficult in all sorts of social situations. I (or rather, Mrs Warrior) has to choose where we sit if we are out socially. We must sit away from large groups or families; sometimes we have to leave if the noise is too much; sometimes, the noise just becomes one big blur and I sit in (seemingly ignorant and rude) silence. It’s not ignorant or rude, it’s just that to say something/anything might lead to trouble.
This is even difficult when we are out with other brain-injury survivors, as we often are because we are in two different support groups. I cannot say often enough that strokes and brain injuries affect different people in different ways. While I am hypersensitive to noise, others may have lost what I call their ‘subtlety filter.’ They speak in an over-loud voice, will intervene in conversations, will be oblivious to the concerns of others.
I understand their situation because I am looking at it from the other end of the discussion. While their injury has left them naturally noisy, mine has left me naturally quiet. To people who don’t appreciate brain-injury, both of us will seem ‘odd.’
We’re not odd, we’re just trying our best to work with the hand life has dealt us. As I said at the start of this post, if I can stop one person from ever again saying: “but you don’t look like you’ve had a stroke….’, I will feel that what I do is worthwhile.