But what does all that actually mean?
What happens to you when you have an SCA?
As a result of the experience, one way or another, your life and the lives of those around you change, perhaps because of an alteration of your physical capabilities or… and perhaps more disturbingly, through a change in your mental characteristics.
We can all identify with movement disorders, balance or coordination issues because we can see them, and they are simple and obvious to understand. If I see someone in a wheelchair, I know instantly that they currently have some issue with walking.
So does everyone else around you.
What is less understandable are the subtle changes in how your mind processes information, reacts to situations or why you now feel the way you do.
Few of us can truly understand why people behave the way they do, but I suspect that people are not the same as they once were before they had an SCA.
Wives, husbands, children and friends, or anyone else that knows you will notice and can be puzzled by the subtle or sometimes more obvious changes to your persona.
Sometimes these changes are regarded as welcome, and sometimes not.
Doctors have realised for some time that there may be unpredictable consequences to an SCA, but unfortunately, these warnings and explanations don’t always filter down to those affected, and they can be surprised.
Because you look the same, people expect you to behave the same, and you are predicted to behave in the future as you have in the past, to enjoy the same things, to like the same food, to have the same gregarious, extrovert or introvert nature or whatever fits?
But you may not be the same person.
You may no longer enjoy the things you once did.
You may be more introspective, intransigent or impatient than you once were. You may struggle with things that you never used to, like wiring a plug or remembering words or people.
You may now like seafood where you previously hated it or develop phobias or fears that you never had before.
We normally change slowly over a long life, and changes in us are in small and socially tolerable increments, but an SCA is a precipice that you have stepped over, and things about you can change abruptly, causing people to notice, but possibly not understand resulting in confusion and perhaps an unwelcome reaction.
Our values… what is important to us, our morals, attitudes and behaviours, the very things that guided us in our pre-SCA lives are to a degree re-calibrated after an SCA.
Our lives, friends and beliefs are based on our value systems, so if that value system changes, we may behave in a different way from how we used to.
That may mean that our friends or close ones are confused by our new behaviours or attitudes, and they no longer feel the same affinity as they once did, and the relationship can seemingly break down.
As SCA survivors, is there anything we can do about this, and the answer is… maybe!
Conversations I have had in the past with others where I have said:
I do not know why I feel differently now, to how I used to… I just do!
I do not know why I now lose my temper over silly things sometimes, things overwhelm me, and I react!
I struggle with doing things I used to be able to do with ease, and it upsets me, and then I feel down.
It’s not that I am lazy, I just feel so washed out all the time.
I think even young children recognise honesty and appreciate sincerity.
No matter what, talking about it is the only way people will know how you feel. And you will only know how they feel by talking about it.
I know people from this group who couldn’t talk about how they felt, or the people they tried to talk to wouldn’t engage or talk about it. I fear for these people because refusing to discuss these important issues is never a solution when explanations are both necessary and welcome.
An SCA is a life-changing experience.
It reminds us of our own mortality and the fragility of all life.
It pushes us to find happiness and not sweat the small stuff.
To realise that waiting for ‘when‘ is a mistake before fulfilling your dreams.
An SCA is a life-changing experience.
Your life has already changed, and you now have the opportunity to live the life that you want, which might be the life that you had…. or something different?