I made up my mind to use public transportation that day, something I haven’t done in the past fours years probably. I have to thank my friends for that (who are kind enough to give me rides because I still can’t drive!) but that day, I just wanted to prove to myself that I could at the least take a bus by myself and get home. It was a cold and misty Tuesday afternoon and I missed the next bus sitting in the rehabilitation clinic scrolling through my phone aimlessly trying to stop the tears from flowing down my cheeks. I just had a consultation with the neuropsychologist who told me that I have cognitive impairment, and the current impairment is worse than it was pre-surgery. She is a very kind and comforting woman who started the conversation with “If you have been feeling like something is wrong with you, it is not because you are crazy. Something is wrong with you.” She showed me graphs comparing my pre-surgery assessment when I had mild cognitive impairment and almost all areas of my brain function are performing worse than they used to. My IQ is under a 100. In my mind, I thought, “I think I’m officially stupid now. Can people tell?” I want to argue you can’t put a number on meta-cognition and I’m more than my IQ but when the assessment was staring in my face, I had a rush of emotions which I could mostly summate to feeling inadequate. But removing the tumor was supposed to stop the impairment and (hopefully) reverse it in some time. If there was one thing I hoped the surgery would achieve even if it was at the cost of my life, that was stopping the cognitive decline. I wanted to feel like myself again like I could think on my feet and read and write to a normal level of function. And there I was, at the same place all over again after three years of working very hard on recovery, eating healthy (mostly… can’t blame a girl for living a little!), working out whenever I was able to, resting whenever my body asked for it, trying to recover on my own without depending much on medication.
I would have pulled my scalp out with the hair because of how helpless I felt and I kept asking myself, “What am I doing wrong? If someone told me what it is, I’d do it right. It’s not anything I do. It’s just happening!”. I was trying to clear my head, keep listening to the neuropsychologist, and have a useful conversation with her as she continued, “I’ve never treated anyone with a pineal teratoma but I looked up some case studies in literature and there is evidence that tumors of this size are symptomatic and sometimes, the cognitive impairment could be permanent.” Firstly, I finally met a clinician who actually looks up case studies and believes that data because to a lot of my healthcare providers, clinical trials don’t mean much if it is not already in the textbooks and nothing if it is a case study. Secondly, if it was permanent which I thought some of it was, it should have frozen at the pre-surgery level of impairment. “I can’t tell you conclusively what is causing this. It could be a result of a residual tumor.” Oh! the glorified residue again. But it has been stable for the last three years and my neurosurgeon would argue that it is just scar tissue. “Or the scar tissue healing. There is also evidence in the literature that repetitive migraine attacks cause cognitive impairment or it could be because of the medication you are taking.” But then, these are two discrete data points three years apart. I have no data in between except my performance at work and a general sense of well-being to understand which of these factors likely caused the decline. The obvious question then was if it is going to worsen. She had an elaborate plan for treatment (neuro-stimulant, cognitive therapy, change in current medication) and then she said, “That is not where my mind goes immediately but you can never rule out the possibility. If this is degenerative, no matter what we do, these scores are only going to go down. We’ll repeat the assessment after a year and see.”
I reached home finally and looked at my apartment – piles of clothes all over, dishes in the sink that haven’t been done in over a week, groceries that are going bad in the fridge because I haven’t cooked in a while, things that I always look for but misplace them because of poor memory… I realized I have been living the life of someone with cognitive impairment already. I know this from working with carers of dementia and how they first found out about their care recipients’ cognitive impairment. Over the last few months, it worsened. I haven’t been watching TV for a while because that felt like a lot of work. But TV is supposed to be de-stressing and is meant for people to understand without causing much cognitive load. Over the past few months, I only watched a few episodes of a TV show I already watched. The only thing I’d do is sit idle and brood over why I don’t do anything. Honestly, sitting idle was the only thing that didn’t feel like an exhausting task. Doing everyday things such as choosing what clothes to wear or what to eat made me fatigued. There were signs all over the place, I just was not looking.
I was not looking because being constantly aware and listening to your body takes a lot of energy and is tiring. Cognitive impairment is interesting because when it starts, my mind always tries to attribute my inability to do basic things to stress or to the increased difficulty level of those tasks because it is very hard to look inside and accept the inadequacy. Through the days I lost in brain fog and somnolence, countless times I thought of giving up everything and running away to no clue where, I always thought that I have to focus and if only I focus more, I will be able to get stuff done. I just kept feeling miserable and like a failure who had no desire to achieve anything. Now I know, that was my body crying for help. My friends tried to talk me into not giving up. Looking back at it, now I know that it was the voice of my impairment that I was fighting. I thought it was me and how I feel now but there was the “regular” me, the voice that would have come out if my body weren’t going through so much of stress. It was there deep down and that was probably the reason why I didn’t do any of those impulsive things my helpless body asked me to do.
But when that happens for a few weeks, I should have realized that this is probably neurological. When you have no motivation to eat or cook or sleep or meet anybody and when you start ideating suicide but don’t even care about it because you are apathetic about life or death, you should probably realize that this is a medical issue. But I did not. In spite of my experience with depression, PBA, and cognitive impairment, I could not realize it because awareness is a conscious process and I took a break from it to live my life like a normal person.
Then how did I happen to get this assessment, you ask? That was serendipitous. I was working on developing a tool for reflection and self-awareness to help with brain injury recovery (ironic!) and my advisors asked me to pilot it with my own data. When I looked at the data and wrote accounts of my life for 30 days, it was clear that I needed help to function in everyday life. I’ve been actively looking at my everyday life and how medication and lifestyle are affecting me and started problem-solving. I don’t have many answers yet but I have something to start working on. I still hear things my restless brain wants me to do. But I know it’s not me in all my senses (if it makes any sense at all). I know when I’m feeling better, I will thank myself and all the people for helping me hang on to that last thread of possibility that this impairment might get better and probably, I will have more insight into myself and won’t walk away from driving my own life even if I can’t drive a car just yet.
Moral of the story: If you feel constant lack of motivation, seek help! It is probably not in your control to focus.