I didn’t set out to be part of change. I also didn’t aim for a possible improvement to the current state of my injured brain. Regardless, I stay eternally hopeful. I am nevertheless, driven by sheer willpower and determination as I continue to make progress. I know my brain is not (quite) where I want it to be. But I am sure I will get close enough to a fully functional version of myself, albeit somewhat altered!
Who knows, I might just end up liking this new version better…
What I can control VS what I can’t
I made a conscious decision a while back. As a natural born problem solver, living with a brain injury is a problem I need to solve. Mostly, for myself. I do not want to make it someone else’s problem. It’s not through lack of trying to navigate medical and governmental systems to get the help I need either. Quite frankly, they have let me down. The reality is these systems are somewhat broken. They are hard to navigate, and even more so when you have a brain injury, but “function better than most“. At least, so I keep being told. While it is extremely frustrating, I am thankful that I can help myself, albeit at a snail’s pace.
*There’s so much more to the rabbit hole you spiral down. I can elaborate, but choose not to at this time.
Stopping work in April 2023, to focus on my health, was the best decision I made. The fact is I realised something was very wrong. I just didn’t know what. Unfortunately, it cost me my job just over a year later.
What I’ll share next is only the tip of the iceberg in terms of what I’ve been up to. I’ll share more as time goes by in the hopes that my story will help others in the same situation. I have no doubt it will.
My voice matters with a seat at the table
I’ve actively ensured that I’m part of the conversations that (now) include, and are relevant to, me. Conversations about brain injury and disability. More specifically, hidden disabilities have become part of who I am. Not everyone sees hydrocephalus as a disability. Still, there’s no denying the manifestations of all that we endure as a direct result of it. OR, the irreparable damage it causes. Its negative effects places limitations on an individual and wreaks havoc.
As an awareness advocate I am definitely defined by it. Though that seems irrelevant somehow.
If I must be honest, this condition is not mine by choice. But it is my reality and outside of my control. Some of the conversations I’ve been part of below are about me, and for me. More importantly, it’s also about so many others around the world. That makes it truly special. It’s the push I need to continue advocating and spreading awareness. And, ironically, it has given me purpose.
Over the past 2 years, I have been part of several focus groups. We explored the different areas related to life after brain injury. Invited to share my lived experiences and be part of some important discussions like:
- The effects of alcohol on brain injury survivors. I shared my lived experience about how and why I stopped consuming alcohol, even socially. When you have a brain injury, alcohol only adds to the adverse effects. It certainly doesn’t help!
- The importance of support from friends and family for those affected by brain injury. A big one for me at the time as I felt completely isolated and alone. Most days I still do. Without proper education and awareness, it becomes a slippery slope to navigate, affecting all relationships…
- And, I’m excited to be part of the traumatic brain injury consumer panel. Providing insight to Griffith University by sharing my lived experiences to help shape their research so it better meets the needs of the TBI community. As of now, this work is focused on people with spinal cord injuries, and positively so! Watch the video below to learn more. As research continues, I’m more than happy to be a participant in any upcoming trials.
My brain has already run away on this one!
Can you imagine the possibilities for the hydrocephalus community? I admit, it’s not a cure. Yet, the hope remains that it will help in the recovery and repair process. We need this after brain injury during surgery to treat hydrocephalus with shunt placement, and/or ETV (Endoscopic Third Ventriculostomy). Repeatedly!
The fact is this condition does not allow us to be proactive. Instead, we live in a limbo state of constantly being reactive.
Also, think of babies who endure brain surgery hours, days, or weeks after being born. With advancements made to date, doctors can diagnose hydrocephalus during pregnancy. Or those of us diagnosed later in life. Can you imagine having a way to help repair any of the damage after the fact? It will undoubtedly lead to a better quality of life as opposed to the current state…
Advancements and change are on the horizon! While my knowledge is limited, at this point in time, I’m keeping my eyes on these two for personal reasons:
Griffith University
I am excited about the possibility of having damaged brain cells repaired and/or regenerated. This is after the brain bleed I had during surgery, which has affected my cognition and executive function. Albeit mild, it’s enough to disrupt life as I know it and create some rather frustrating moments along the way. Still, this is likely a few years down the line. Maybe there’s even a way for these cells to repair some of the other causes, like my aqueductal stenosis. But, before I get ahead of myself, or let my train of thought run rampant, one step at a time.
Disclaimer: This may not even be possible, but I remain hopeful and open to the idea of it, nonetheless.
Kitea Health
Kitea health is a “medical technology company based in Auckland, New Zealand, building the next generation of micro-implantable devices for managing chronic health conditions”. They have developed “the world’s most accurate implantable sensor for heart failure and hydrocephalus”.
For those diagnosed with hydrocephalus, my understanding is that the sensor is implanted during surgery. This occurs when treatment fails. I suspect that, in time, it will eliminate the need for ICP (Intracranial Pressure) monitoring. For anyone who is unaware, this is a diagnostic test presently used to determine if surgery is needed. I’ve personally had this procedure done a few times. Honestly, the benefit of being able to check your ICP at home, and stop second-guessing your symptoms, is a game changer!
Goodbye gaslighting!
Watch this space!
Disclaimer: As a participant in the focus groups and consumer panel, I am remunerated for my time and input with a $100 gift card. Other than that I am in no way affiliated, financial or otherwise, with either Griffith University or Kitea Health. My interest is purely for my own personal gain as a person living, and diagnosed with, hydrocephalus and brain injury. More importantly, it is my hope that my input will help effect change.
This post is not intended for medical purposes or to influence you in any way. As always, do your own research. Discuss your situation with your health care provider/s. More importantly, make informed decisions for your own health according to your own risk appetite.
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