Brain surgery: What you may not have considered…

Concussion, based on a true story, is currently playing on Netflix (until 9 June).

It’s scary how being able to relate to something, so serious, can hit you so hard. Despite it being centred around the National Football League (NFL), the bottom line of this movie, and how it relates to me, is that brain injury is the result. Similarly;

The effects are real!

• It affects everyone involved and “rips families apart”. Lord knows the strain it’s placing on my own family right now…I see it but feel powerless to stop or change any of it.
• Those affected saw suicide as their only option. It’s this EXTREMELY OVERWHELMING feeling that led me to the realisation that I needed to do WHATEVER it takes to step away from the edge. Mildly put; I FULLY understand how people who have access to a gun can, in the moment, feel the NEED to pull the trigger!
• The players behaviour and personality were affected. They suffered from depression and overall feeling of “going mad”. I have lost count of the number of times I have felt this way. Gentle reminders, kindness towards myself and self care have gone a long way in this regard.
• Just wanting help, because you don’t know what’s happening to you, with no one prepared or equipped, to do so. Help. Such a powerful word when used. It provides an opportunity for someone to be of assistance and possibly change the course or outcome of a situation. Yet, when it’s not there OR you don’t know what you need help with (specifically), it increases the challenge.

This movie is triggering because Dr Bennet Omalu, utters the words; “It’s common sense”. For me, common sense says; Brain surgery, to implant a shunt, is pushing something through brain matter, effectively causing injury.

I appreciate the weight of what I’m saying.

No surgeon has ever told me that inserting a shunt into my brain will cause brain injury. (I doubt anyone will). All but one has uttered the words; “We do more harm than good each time we go in”.

A full explanation of the risks and consequences we agree to, by signing the surgical consent, doesn’t go into this detail either. Even if I had been told, I don’t think anything could have prepared me for what I’ve experienced over the last 2 years. Nor could I have been adequately prepared for my current situation. Something that makes me sit back, with hindsight, as my guide…

I don’t need a formal diagnosis to tell me something is wrong with my brain…

The invisible changes wreaking havoc…

My intellect is still intact (Thank God!). But, I have a fair bit of cognitive impairment and Anomic aphasia, amongst other things, as I struggle to find words sometimes. Thankfully my written skills are still intact, hence my posts BUT, it hasn’t gone completely unaffected. I feel like I used to be more articulate and faster at crafting my messages. The multi-tasking, 10 balls in the air person that I used to be, is gone. Now, one instruction at a time is what I need in order to get something reasonably done. Anything more than this, at one time, sends my brain into a complete spin! And, anyone who reprimands me for “not paying attention or listening”, essentially leave me feeling overwhelmed and back on the edge…

I would probably appear lazy or uninterested to an outsider yet I know I’m not. Some may even think me to be a bit of an “idiot”, for lack of a better word. My personality changed somewhere along the line too. I used to think I was just rude, and flooded myself with negative self talk. Wondering; “Why?” Or asking; “What’s wrong with me!?”, often enough. My husband jokingly calls me; “Celeste L. Jackson” – in reference to Samuel L. Jackson. It’s a funny-not funny moment. I’m not proud of it.

I have no doubt my relationship with my family has been affected. In fact, that’s one of the things that crushes me. Feeling like a failure as a mother and wife. Knowing that I may have scarred or potentially affected my own children, as none of us are aware of the reasons behind any of it. Nor do we have the knowledge to deal with it effectively. THIS is a failing I see on the part of the medical profession. People who are knowledgeable enough to know the consequences and effects of a brain bleed/injury. At a minimum, they should educate families and provide them with the tools to navigate these uncharted waters. Even after the fact would be better than leaving you to figure it all out on your own.

How I’m helping myself

Everything in this post I have had to figure out on my own. I’ve asked for help and am waiting for my appointment with the brain injury rehabilitation unit: 4 October 2023. I had to stop working, since 3 April, as advised by my GP, to keep myself as far away from the edge as possible. A case of survival and sanity above all else. At the end of the work day, having pushed myself cognitively, I felt suicidal – Not a good place to be. It’s my way of clinging onto a life, which feels foreign and for my kids, despite the damage done to our relationships. Not working brings with it challenges, stress and concerns of a different kind. I’ve also asked my Neurosurgeon to check for any signs of early onset dementia, just to rule it out. MRI for any signs of brain atrophy is pending.

It doesn’t make it any easier but, this in itself, would be a step in the right direction.

Not an easy decision…

As for myself. From this point onwards, I’m refusing any further surgical intervention. (I know this might be easier said than done). I begrudgingly “accept” the damage done till this point, and no further. I reserve the right to make that decision for myself. I’m simply not prepared to lose anymore (of myself) than I already have, or potentially could. More importantly, I refuse to be a burden on my family…

Disclaimer: The thoughts and opinions expressed in this post are my own. They are not meant to influence the reader in any way, or provide medical advice.