First Published on April 19, 2018
There is always more to tell; stories never really end, and I am beginning to realise that this one is only just getting started. This article is personal; that is, it belongs to a specific person. This person has contacted me to tell me that these blogs have been useful for her, as she finds her own way through the tangled nightmare that is post trauma. So this article is for you, my friend in need, and it is an article which has a very specific point to make.
I have tried to express some problems faced regarding the communication of experience, especially with regards to how well someone may appear to be. The invisible ailment is the most difficult of all because people respond to visual cues, and when they see healing happen externally, then they will assume that wellness is also being achieved internally. This is not always the case. The brain is a complicated beast, and when it is damaged, there is a great deal that can go wrong, and not all of it is measurable.
My condition manifests as acute anxiety, hyper vigilance and hyper stimulation, or if you prefer, I absolutely FREAK OUT. I have never experienced fear like this, it is uncontrollable, it hurts, it is torture, and it is very very real. Very often people will say to me, “but what are you scared about?” or “You’re okay, there is nothing to be frightened of, you can calm down.” I cannot calm down. I am at the mercy of my limbic system, my fight or flight response is permanently on – and I appear to be able to do nothing about it.
Imagine this, you wake up in the morning having slept deeply, for a few minutes everything is as it should be. You are not yet fully awake, and you quite enjoy those few bleary moments between the waking world and dreamscapes. But then there is a thought which flickers through you brain, it is an invisible thought, you cannot quite read it, but it leaves an after image, and you remember. You remember that you are unwell, you remember that you have suffered a brain injury and you remember that you are scared. At this point you have a choice, stay in bed and hide from the world, or get up and find as many ways to distract yourself as possible.
You choose the distractions, you choose to be active and to trick yourself into being well. People see you doing this and think, “oh look, they are doing really well, they are busy doing things, that means they are getting better and can go back to work very soon.” Finding useful distractions does not mean you are well. It means that you are putting energy into avoiding feeling the constant stab of debilitating fear. When this anxiety comes, all the symptoms return, nausea, headaches, dizziness, disorientation, and one is literally “dis – abled.” That is, your ability to function within certain parameters is removed. This is not a choice.
I do not expect people to understand what it is like to live with post concussion and post traumatic stress disorder symptoms; nor should I. However, I do ask them to accept that what is being experienced is real, it is not within the sufferer’s control to “calm themselves down,” and just because they can function in one environment that does not mean that they are better. I am now a few days away from losing my job, I do not resent this, I do not feel angry or bitter about it. However, I do expect my employer to acknowledge that I have no choice in the matter. That is the key word here NO CHOICE – I cannot stress enough how little control one has when trauma to the brain has occurred.
Since writing this series of blogs my life has been through many changes. Some of them happy, some filled with grief. Unfortunately the pressure on my marriage was too much, I have moved to another part of the country and am now building a business teaching presentation skills. I am pursuing my dreams and finding a new happiness which is rooted in choice, and the knowledge that we should take every choice we can, because we have far fewer of them than we like to think.
If you have suffered a head injury, or are involved with the recovery process in anyway, then I would love to hear from you.
I am currently working with the University of Brisbane and the NHS on how we can use client narrative's to better facilitate effective recovery.
If you would like me to come and run a presentation and workshop on this subject then please