Terrified by My First Bout with Brain Fog

Kristiana Page avatar

by Kristiana Page |

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Sitting in my very first philosophy lecture, as our guest speaker was introducing his slides on Hinduism, I was the recipient of another type of first — my inaugural bout of brain fog.

At the time I was so confused and upset, trying to type out lecture notes and frantically struggling to remember what my lecturer had only just said. What was happening to me? Was it a matter of simply being too tired from getting up early, or if I had actually forgotten to pack my brain that morning?

A couple weeks later, reading some literature on lupus, I stumbled upon an article on brain fog and it all finally clicked. But in that same moment of realization, I also was devastated. No matter who we are, time is unkind to the physical. But there was always my assumption that my mind would remain undoubtedly recognizable for a much longer period of time.

Though my body and face had been temporarily taken from me by prednisolone, I had regarded it merely as an inevitable lesson in what was yet to come as the years pass. However, losing my mind to brain fog, for a day or even for only a couple hours, left me truly hurting.

My family is incredibly open. As we’ve had three grandparents pass away from health/medical causes, each of my parents and sisters are well aware of exactly where I stand on the topic of euthanasia – and there’s no doubt that I’m a proponent.

I’d likely be described as opinionated, strong-willed and intelligent, and no matter how much each of these traits gets me into trouble, I’m incredibly proud of each of them.

The parts of myself that I take most pride in are the ones that time and effort has actively and consciously been placed into, such as my intelligence and, academic ability and works. But I’m able to love these parts of myself only because my mind is capable of such things.

Struggling to take down lecture notes, or not being able to string a sentence together for one of my columns, I’m defeated, and for once there’s no way for me to fight back. In those moments, it’s a brief taste of what it’s like to live without my own mind and the urge to run from it overtakes me. The problem is that I can’t; there’s no choice but to sit with the haze and hope it’s merciful enough to dissipate quickly.

My pro-euthanasia stance is firm because I don’t want to be here when it means I’m incapable of understanding and having an opinion on the bigger problems that occur in our world.

When my time comes I want the choice to leave with dignity and peace, knowing that the world saw me at my best, but didn’t have to watch as my mental capacity diminished and faded to nothing. I want it to be my choice.

Meeting and conversing with intelligent individuals, makes me euphorically happy, and when I no longer can my wish to be here will cease. I know what my being needs from the world, and when my mind has evaporated and no longer inhabits it’s body, that’s gone.

I won’t be happy to greet death; I’m in love with living. An existence to be proud of, no matter what spanners lupus throws into the works, it’s not optional in my books.

Having met brain fog and shook him by the hand, I know that the two of us cannot harmoniously coexist. If he – or one of his other mind-snatching cousins – comes to stay with me indefinitely in my old age, please let me go, as it’s been decided that I’m needed in better places.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.

Judy Lynn avatar

Judy Lynn

I do feel for you...I was in graduate school when MS and 'cog fog' arrived in my life. For logistical and practical (health insurance) reasons I made the choice to suspend school in exchange for full-time employment. At the time, I completed a full neuropsych cognitive function test. It was reassuring to see high scores and understand the transitory nature of the fog. But I also knew/know that MS can bring permanent cognitive deficits. That early test gave me an important baseline. I've re-tested once in ten years...all's well except for a slight drop in my 'word-finding'. That being said, it is still within standard range, just a bit slower for me. If you have not completed this test, perhaps the baseline would be helpful to you. I wish your brain blue skies long into the future!

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Kristiana Page avatar

Kristiana Page

Hi Judy!

You have no idea how terrified I am of brain fog! I've learned that it's something that can occur due to my making myself overtired which is within my control, but it's an incredibly scary feeling for me! I will definitely be looking into that!! Wishing the same for you, for many years to come!

Kristi x

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