My father is a medical marvel. According to the average lifespan of a Pick’s Disease sufferer, they should be dead within 2-8 years of diagnosis. My father is currently hitting year 14. By all accounts, he should be dead. He also survived 6 months in Antarctica after nearly dying falling down a crevice there, was incredibly respected among his peers in his field (geology) and, all in all, was an incredibly intelligent and respectable man.
However, this is not the man I knew, and his medical marvel status is only a fraction of who he was and is. My father, to me, was a man prone to fits of violence, irrational and illogical decisions, suicide attempts, and lacking in emotion. More importantly, he was the shell where my father should have been.
Let me explain. Pick’s Disease is a rare type of Frontotemporal Dementia, a neurodegenerative disease. The symptoms include, but are not limited to, behavioural changes, anxiety, a lack of understanding about social conduct, low motivation and more. Behavioural changes in my father involved things such as violent outbursts (such as when he used to make my mother stay up all night while he told her stories of his life, and if she fell asleep he would hit her until she woke up), days in bed without moving besides the bathroom and raiding the fridge to eat anything inside of it, regardless of whether it was raw or off. Anxiety, unrelenting anxiousness about any issue of the day with too many examples for me to even pick one. The lack of understanding about social conduct came about in his tendencies to growl and shout and hurl abuse in restaurants, peeing in the front garden, not caring about hygiene and getting into a fight at the Geological Society’s fancy do. As for low motivation, months must have drifted by with my father sat in his chair, head hanging low as he got through can after can of lager for a full day’s work of doing nothing but being bitter and drunk.
See, there is nothing quite like the endless stretches of time spent with someone who is slowly fading. Not just their memory, as happens to those with Alzheimer’s (the memory loss comes second in Pick’s Disease with the personality changes coming first, whereas in Alzheimer’s it’s the reverse), but also to witness someone losing their personality, their identity. Often my father would get caught in a loop, like a CD skipping. The same sentence he used over and over again, the expletives burned into my psyche for as long as I could understand language.
It is difficult whenever I bring up my past, especially with my father because there is no way to separate his many identities. It is a dense tangled web, and it is almost impossible to dissect one identity from the other: the abuser, the scientist, the lover of my mother, the brother, the son. All of these contributed to him, and my impression of him is simply the husk of all of those identities. To grow up in that household, of a man with many faces, has left another indelible mark on my psyche, one which runs far deeper than his catchphrase, one which makes me fearful of committing to any one personality of my own.
In this household, serious battles were fought over the edge of insanity. Blazing rows, seemingly endless in my child’s mind, fought over things simple as signing forms, moving books – hell, anything under the sun. Not to say that long hard slogs about finances, his ex-wife, social services and the like weren’t had. But the subject matter seemed to not matter that much, for it always came down to the point of my dad simply not being able to cope with the jumps of logic we so often take for granted. My mother would continually throw herself against the brick wall of his irrationality, so they fought for what is almost the entirety of my life (he is currently living back in his own house).
The irrationality of it all, the ludicrousness, was something my mother constantly tried to win against, only to be beaten (sometimes literally, unfortunately). She just could not accept his irrationality, and he no longer had the processes to deal with…well anything, really. In this respect I’ve lived quite a surreal life, and the insanity of it has shown through on many occasions. When having dinner, often his head would end up in his food (literally, his alcohol intake was both heavy and too much for him) after a night of empty conversation. It’s not that he didn’t have anything to say, I’m just not sure if he even knew how to say it anymore. Scenes would break out in public, such as when his card was swallowed by the ATM, and the police were nearly called because he was shouting and swearing with such reckless abandon. More often than not, an explanation was required to any venue hosting us as to why this man was acting so violently. Innocent conversations turned into ferocious rows at the flick of a switch.
Perhaps the most surreal moment of it all was at age 7 (or around then). As my mother and father argued, and as he went to attack her, I raced upstairs and fetched a plastic sword and shield, and slashed at my father if he tried to come near me and my mother, who was stood behind me. St. George and the Dragon perhaps, but I was in floods of tears, screaming at the top of my lungs, bladder on the verge of bursting. He could have crushed me like a bug if he wanted to, but he did not. I locked eyes with him, and he relented, if only briefly. In a world of madness, small victories were rare and had to be treasured. That night was one of the few times I managed to stop the madness careering out of control. The rest of the time, no-one was that lucky to get away from it.
I desperately want to believe my father isn’t evil. He was and still is incredibly sick. He tried to kill himself multiple times, controlled and belittled his brother, was deemed psychologically unfit for his Antarctica expedition (but was taken along anyway because his expertise was so desperately needed) and nearly got killed on a German runway. Instability seemed to follow him around, and every achievement in his life seemed to be counterbalanced by another act of madness or hostility. His life – and mine by extension – sounds too far-fetched to be true. Some would even go so far as to call me a liar. The saddest part of this is that it would be better if that was the truth. Each time I was powerless to stop my mother being beaten, each time I watched my father simply unable to cope with basic tasks, the pain that has rippled throughout the entire web of my family. All of these acts could easily be fiction, but they are not, and I live with them each day of my life.
But through all of this, the flashes of when my father truly was my father shine so fiercely: when he took me fishing, when he used to lift me up by my feet and hang me upside down, when I walked through the park and he and my mother swung me into the air, the first time I ever beat him at chess, and how I would spend days with the words “Can we play chess?” hesitating on my lips because it was one of the only times I truly could connect with him.
How can I reconcile those identities of him? Do I hate him? I certainly hated him at times, but how can I really hate someone so afflicted? My entire life has revolved around living with this incredibly rare condition, and it has influenced every fibre of me. I am at least inclined to believe I have a fear of power, or possessing it, due to the constant abuse of it I saw happening again and again.
- It’s a mess really. With mental health there are no easy answers, no simple solutions. According to MIND, 1 in 4 people experiences a mental health problem each year. With the pressures of modern life increasing, and the drive for young people to be ever more academically successful, I fear that these pressures will only cause more adverse effects in life. Effects can ripple not just through those afflicted but everyone related to them. Mental illness is not something which can just be waved away with a magic prescription; it is a real problem that affects and can have incredibly far-reaching consequences. The dangers of not accepting it, of pushing it to the side as if it doesn’t really matter, or worse – pushing it downwards and pretending it doesn’t exist, are too dire for me to even think about. More.
How to stay motivated when trying to keep fit.
