The beautiful and subtle human art of denial

From the first seizure to the initial diagnosis of ‘some sort of brain tumour’ had only taken 6 days. It was nearly another two weeks from that point to the next discussion in Oxford. Apart from the daily seizures (slowly being quietened by medication) and continuing daily deterioration in my speech, not much happened. I had been told I shouldn’t drive and was off work due to the seizures but else-wise life continued within my family as it had to - my son went to school, daughter to nursery and we all did our best to hold onto some level of normality in daily life. I gave myself a day after the initial diagnosis discussion with Dr. B to ‘stare into the headlights’ but the day after starting reading as much as I could to find about brain tumours. I found out that there are many different types of brain tumours, and it makes a big difference to what it means dependent on which one you have. As I started to sift through the tomes of information available to try and make sense of it, tiny glimmers of hope started to emerge. Some tumours were benign and could be resolved or managed for years. There were things called ‘brain cysts’ that in some cases could be neutralized. Even some malignant tumours didn’t always carry an immediate death sentence under certain circumstances. I remember reading one particular article about the associated symptoms and it said that the type of epilepsy I was experiencing was associated with about 80% of cases where less serious tumours were then confirmed (the really bad ones often not revealing themselves until it was already too late). On an intellectual level I was telling myself that I shouldn’t dare to hope, but on an emotional level I couldn’t help but do so. I’ve spent my whole life as an optimist (always set squarely in the future!) and it’s a very hard habit to break. Even though I refused to acknowledge the possibility of hope in an overt way, a little core within me was starting to refuse my instructions to stay in the moment and started to plan for the future in rebellion. A future where this situation was resolvable and I’d get my life back. As the rebellion grew, my mind started to search memories and make connections between previously abstract events and built a supporting dossier of evidence. I remembered all the odd times I’d awoken in the night with strange sensations or feelings - like pins and needles and feelings of disorientation. I realized that was why the seizure feelings felt so familiar when they first happened. What I’d previously dismissed as being ‘one of those things’ or the fall-out from too much drinking, late nights or stressful work situations suddenly seemed to paint a story into my past. I remembered the times I’d struggled with anxiety, the time I thought I was having a heart-attack which had then strangely disappeared as quickly as it had come. Despite my best efforts to quash the growing hope within, it did seem like maybe this situation had been evolving within me, possibility for years. A theory started to emerge. Maybe this tumour had been sitting in my brain for a long time. Very slow growing, manifesting itself in subtle ways, easily ignored. Maybe it had finally crossed a threshold which had forced it to be revealed and now to be dealt with. If that was all true and the ‘evidence’ stacked up, maybe there was hope. The intellectual troops put on a brave face and attempted to stand their ground admirably, (their PR people were particularly good at hiding any sign of defeat to the outside world), but there was no denying it; the rebellion was making some ground and my guard was ever so slightly starting to slip. Maybe, just maybe, there was a way out. Go here to the start of the journey. Go here for next blog entry. Go here for previous blog entry.