From the vortex of grief: Ravaged by sickness

For 3 months now, I have found no words to describe what is happening. Some horrors are best left undescribed, I think, and endure in silence. When people ask me How is your father doing? I struggle to find the words. For how do I tell them that the person I've always loved and looked up to has turned into a monster I barely recognize? How do I tell them that the person who was brave and strong all his life has become an emotional wreck? How do I tell them that I struggle to stay in his presence even for 5 minutes, that it feels like nothing short of torture to listen to his endless screams? How do I tell them any of this, all of this, while still respecting and honoring my father? I felt guilty and hesitant even when I think about it, and so I have labeled these thoughts unspeakable, and never given voice to them. But this is my reality now, a sordid and gruesome one that I must wake up to and confront, even if it makes me want to have never existed.

Till yesterday, when a stranger freed me from my self-imposed prison of silence. All I know of her is the message she posted on a support group that we both are a part of. In it, she honestly described her brutal reality: That the husband she loved and adored was now perenially screaming at her, blaming her and being condescending to her. She described the pain and the horror that she goes through every day, and how reality felt like a nightmare that she didn't want to wake up to. She even spoke about wanting to end it all. When I read her message, I had tears in my eyes. This was exactly what I'd been going through, and a stranger had given wings (words) to my tormented thoughts. I realized that I could talk about it, that I could make that horribly impossible burden feel a little lighter. So here's my story. 

When my dad had a stroke, they showed us a CT scan of his brain, where a massive clot occupied the majority of his right hemisphere. It was pushing against his brain stem, and doctors were talking about the dreaded midline shift. About a craniotomy. But no one told me what his mental state would be after this, and that's what I wondered about. Would his mental faculties be very reduced? Would he be able to hold a conversation? Would he even recognize me? One of the things I really loved about my father was his breadth of knowledge, and how he could hold his own in any conversation. I enjoyed talking to him, each time gaining a nugget of information that I had no clue about. I remembered Flowers for Algernon, where at the end, the protagonist loses all his intelligence and goes back to a childlike state of comprehension and speech. I dreaded that, but I told myself that I could and would bear it, because I loved my dad. But amazingly enough, he retained all of his faculties. Initially he lost his voice, but the notes he wrote were peppered with idioms and figures of speech. He made obscure references as he'd always done. He was able to crunch numbers just as well as before. He rattled off a lot of things from memory. (Makes sense if you look up the functions of the left and right brain) I was grateful, because while his body was paralysed, it appeared that there was minimal brain damage.

But what I never saw coming was the degeneration of the mind. I recall watching a prominent psychiatrist talk about the difference between the brain and the mind. She said that the mind was the operating system and the brain was the hardware. She said that unless the mind was alright, the brain could not be utilized properly. It was an analogy that stuck with me as a systems person, but it never fully made sense till I saw what my dad went through.

Initially, his temperament remained the same. There were bouts of despair and grief, when he would feel extremely sad that this had happened to him. There were periods of hopelessness, when he would ask us if he would ever go back to the person that he was before the stroke. But save for that, he was the same person we knew and loved. Over the months, his faculties continued to improve. But his body did not. He could barely move his paralysed arm and leg, and was completely bed-ridden. This brain-body gap started affecting his mind. He stopped sleeping well. He would lie awake all night. Then he progressed to wanting attention constantly. He'd call for my Mom every 5 minutes, without rhyme or reason. He started crying in pain continuously, all day, all night. Painkillers could be given once every few days, but not every day, or it would lead to substance abuse. As days progressed, his mental state became even more fragile. He would start banging on the cot to get attention. He would weep for hours. And when I went to visit, he would barely talk, not even for 2 minutes. And then go back to screaming in pain. Or complaining about my Mom and how she did not care for him at all, when in reality she spent close to 20 hours of her day doing exactly that. He never asked me how my Mom or I were doing, how we felt. He was lost in his pain, his body trapped in a cage his mind did not accept.

Slowly, I started hating every bit of my time visiting my parents. I did not recognize my dad anymore. I hated that my old beautiful memories of him were being replaced by this. This person who was cruel and condescending and mean. Every time I went, a precious happy memory was replaced by a gruesome one. The father who had only kind words for me was gradually fading away, and this monster taking his place. I wished that he had never survived the stroke, so that I never had to see this person. So that I never had to confront the ugly truth that my father, the man I've looked up to all my life, could be this person. The rest of the world had already run away from him. We have no visitors, no relatives or friends who come to see him. But my Mom and I, we're spouse and child. We can't very well run away, can we? Honestly, I've tried. But deep down, beneath all the hate and horror, I still love him. Each time he cries, something in me breaks. Each time I hear him yelling and banging for attention like a savage, I am pained beyond imagination. When I see him in pain incessantly, I feel utterly helpless. 

And that's how it's been. At times, I fear that this is not the worst. I shudder to think of what is to come. And other times, I pray that he finds peace. It is okay if he never gets to be the person I've known and loved, but I hope he doesn't have to inhabit each moment so painfully and agonizingly. I pray that he is able to sleep peacefully, at least for a few nights if not all. And then, lastly, I hope that I am able to remember the good memories, that they don't get overwritten. That they triumph over these awful ones. In the end, I tell myself, that's all that matters. Better to have loved and lost than never to have loved at all.