First Published on January 9, 2018
I haven’t really done too much research on this condition. I have been in touch with Headway, who are a fantastic organisation providing support for people who have suffered brain injuries. Headway also run support groups, but I have not attended any of these. I have had some fantastic support from a colleague in New Zealand, who suffered a similar injury, and of course I have been supported by family, friends and my wonderful wife, who has known when to give me the space I need and when to encourage me to push on. I have also had some very flattering feedback from people who have read the blog, and I hope that all who read it will share it widely. This piece of writing has become the most important outlet for me, and it is the best way for me to structure my thoughts and feelings about my own recovery.
Next week I will be returning to work for a planned, staged return. This means that I will not start back full time straight away, but I will increase the number of days over the course of 3 to 4 weeks. Am I ready? I don’t know. When I think about going back to work I am filled with anxiety, but I do not know whether or not this is because I have had so much time off, or whether it is because I am just not ready to go back. Over the last few days I have suffered a relapse, and I have felt a resurgence in severity of my symptoms. This has unsettled me greatly, and one of the worse feelings is that I am somehow bringing this on myself. There is a guilt attached to this condition that is almost impossible to describe. It is hard to articulate because it is not just guilt; it is a collision of several emotional and psychological states, all of which seem to conspire to catapult me into an abyss.
First of all there is guilt: I could do better, I could try harder, I should be getting better, I am letting people down – all that kind of stuff: the should’ve, would’ve, could’ve state.
Then there is frustration: Why can’t I do better? why can’t I just not feel like this? Why can’t people understand how I am feeling? why cannot I not make a choice to feel a different way like I would normally? Does this mean I am no longer normal?
Then there is depression: This isn’t getting better, I am useless, I can’t do any better than this, I don’t know who I am (this last one is less prevalent at the time of writing, but when symptoms exacerbate, it comes to the fore and all I want to do is lie in bed and stare at the ceiling.)
Alongside these are the physical symptoms, such as headaches, occasional dizziness and vertigo, occasional photosensitivity and the physical aspects of anxiety (chest tightness, shortness of breath.) Strangest of all is the sense that everything is vibrating at a low frequency, it is a disorientating and unsettling sensation.
But underlying all of this is something darker. It is something that I have been alluding to in the story that has become a part of this account in the form of the giant black fish. It is something that I have no words for, no understanding of and no real perception of. I do not even know that this is an aspect of post concussion syndrome, or an aspect of myself which has been revealed since my faculties have been disrupted. It is not a feeling either, if I had to define its characteristic I would say that it is an awareness of absence. There is something missing and I cannot place it, something has been taken away and I do not miss it, but I am aware of the space that it’s absence has created. An emptiness has been revealed; a dark space which resides in the deepest recesses of my psyche, a dark space which I suspect we are all a part of.
This “awareness” is of a thing that I cannot name nor describe nor perceive. When I wake in the morning it is there for a fleeting moment, revealed to me as a fragment of truth, but the noise and chaos of conscious thought soon banishes this spectre to the sub-neural recesses of my mind. As this phenomena sinks into my subconscious like silt in water, it becomes me, and I am defined by the Presence of Absence. Just like the giant fish that consumes me, which I then become, I am cycling through this existential crisis on a daily basis.
This week I will be going back to the doctor’s to ask for a Neuro-Psychology referral, this will (in theory) provide me with some kind of rehab therapy. It is three months since the accident, which means that I am now in the realms of chronic conditions. Chronos himself was cursed by Zeus to wander the earth counting every moment in an eternal torture of the soul. I don’t think I am quite that bad, but I can certainly empathise with Chronos – although I didn’t castrate my father and wage war with my children, so I guess you reap what you sew. Perhaps is Chronos had banged his head whilst playing Badminton with his father, Zeus would have been more forgiving.
I digress. The Neuro Psych referral is something that I have been advised to push for, and I could certainly do with a little more specialist input. There is definitely a need to take it easy, pace myself and be realistic. However, there is also great benefit in physical activity (I have been doing a good deal of baking!), structure and purpose. My wife and my doctor have both been integral in pushing me at the right time to ensure that I do not fall into the role of victim. So, as with all therapeutic processes, this is a balancing act between what is realistic and what is necessary. However, as I move on with my recovery, I am aware that there is a danger that people will see an increase in function and think, “well you’re all better now, crack on,” at which point I risk further relapse.
My current relapse though, has taught me something. It has shown me what I can and cannot do. It has shown me that I should expect a sometimes erratic trajectory to the recovery process. It is only through over-reaching and pushing myself that I can correctly gauge what I can and cannot do at this point. When the symptoms are triggered they take several days to calm down again, and I need to take it very slow. I am learning this, I am making myself learn through building this strange narrative relationship with he condition itself.
I remember a conversation with a friend of mine who was diagnosed with Multiple Sclerosis (MS) during which we discussed the importance of owning the disease. She spent a good deal of time battling with depression and anxiety in reponse to the diagnosis, but her strength came back to her when she started to relate to the MS, to see it as a part of her own experience, and therefore something that she could manage. Sometimes it got the better of her and she had to surrender to the effects, but other times she used her knowledge and skills to maintain and improve her wellbeing and quality of life.
But you have to KNOW YOURSELF – you have to. You must make the call yourself and be confident that you are making the best decision for you and those around you when you say, “I am really sorry, but I am not that well yet.”
However, this does not imply that you should not explore the limits of your abilities. Relapse is not failure, it is a point of learning. The opinions of others are not prejudice, they are conclusions drawn from perceptions that you do not have the luxury of – just as one’s own “disability” is born of a different set of experiences which those around cannot imagine. You may note, dear reader, that I have, for the first time, used the word “disabilty’ in reference to myself. This I have done with a certain amount of consideration, as I do not suffer a permanent disability, but I could not find a more appropriate term. “Ill”, “unwell”, “sick” and other adjectives convey a familiarity that we can all associate with. I do not feel this in myself, the experience of Post Concussion Syndrome has been so alien and unsettling that to describe myself as ill, is, I think misleading.
Anyway, my conclusions from all of this are that there is a need to understand the impact of what I am experiencing on others and to recognise when those that I love and trust have insights to share, even when those insights are uncomfortable or at odds with my own interpretations of the situation; and secondly that the recovery process is a tightrope between what is possible and what is necessary, and that relapse is not only to be expected, but is needed within the process as a gauge against which further steps can be measured. Apologies for that last sentence, it was far too long. Finally, you must know yourself, you must have the confidence and belief to trust your own emotions, thoughts and actions; and one must communicate these things with compassion and sensitivity. This confidence can only come from knowing that we have the support of loved one’s, employers and health care professionals. Through this dynamic relational environment one can hope to keep a close watch on the darkness that lurks in the background and construct a positive approach for the benefit of all.
There will be more in this series of blogs: more of the story of the man and the big damn fish, and I expect some reflections on my return to work. Thankyou for taking time to read this and please do share it with others, expecially if they are currently navigating their own recovery process from head injury.
If you want to contact me personally, then you can do so here