When I was diagnosed with Hydrocephalus, 16 years ago now, I had to find my tribe: People who knew and understood what I was going through, because they shared the same diagnosis.
Support groups on Facebook were great but, starting my blog, Skyewaters.com, was a step in the right direction. It gave me a much-needed outlet, a way to: CONNECT with others, give and receive SUPPORT and, more importantly, a means to SURVIVE. Some people may think that’s a bit of an over exaggeration BUT, the highs and lows that come with an invisible and incurable condition, is beyond anyone’s understanding.
Added to my Hydrocephalus diagnosis, following my brain bleed during my repeat ETV (2 years ago), I’ve been left with a cognitive impairment i.e., brain injury. The insult to this injury; I’m the only one who knows it’s there! A living hell at times, I will not lie.
I suspected that not everyone with Hydrocephalus would be able to relate to my current state. Therefore, it made sense to look for and find a second tribe, which I am and have. It has been slow. It has been painful. It has been lonely and isolating. BUT, more than that, it has left me fighting for my own SURVIVAL. Literally!
We normally say; “You are not alone” yet, the fact of the matter is, YOU ARE. In the moments when your pain is so excruciating and there’s no one around who can help make it better or take it away. When medication doesn’t work for you and you’re left with no options. No one outside of your head or body can see or feel the physical agony you are in (obviously).
Admittedly, with these kinds of diagnoses comes loss of so much more than anticipated, including relationships. Or, worst are scenario, loss of life as the person affected (by a brain injury), becomes too overwhelmed and powerless to the full effect of their injury. It places pressure on everyone involved and, as I’m discovering (more and more), without proper education and awareness (for all involved), it’s a recipe for disaster. A situation where so many families have been torn apart due to lack of understanding. A snowball/domino effect wrecking havoc. Marriages fall apart under the pressure and children become estranged, as they don’t understand the changes they see in their loved one, or simply lack empathy or maturity. As for the person affected, they themselves struggle as their life has been turned upside down in an instant.
To those on the outside, you look fine so, you MUST BE fine.
I think saying; “You are not the only one”, is probably more fitting. And, not in a way that minimises what you’re feeling or experiencing. Not all of us have understanding or supportive family and friends, which only makes it harder. We don’t all have access to neurosurgeons or medical teams, who provide us with a level of comfort, in the event of treatment failure.
Finding your tribe may lead to a connection with a few like-minded people OR, it may lead you to just one other person who gets what you’re going through. And, sometimes, that’s all you need.
Remember: We may have the same diagnosis, but our experiences differ. Our life circumstances aren’t the same and what may seem simple to you may not be as easy for the next person.
These conditions come with a heavy financial burden, one that most of us aren’t able to bear. Inevitably it comes down to foregoing care and treatment, and continuing to be a punching bag to the incurable and invisible bully(s), life has placed on your path. Also, it’s highly likely that one feels like a burden not only on your family, but also the medical system, government support services, etc.
I’d rather walk away than be a burden on those I love…
More importantly, and sadly, not all medical professionals treat their patients with the care and understanding they need. Some, unfortunately, even lack the knowledge required to treat Hydrocephalus or brain injury patients adequately enough. There’s a whole host of reasons why this is but, that would require a post of its own.
I like this saying:
“Brain injuries are like snowflakes and fingerprints. NO two are the same.” Every brain injury is different which means every survivor will have their own, unique experience. Therefore, don’t compare your progress with someone else because the effects and corresponding treatments for TBI vary for everyone.”
Source: Flintrehab
Other than all the hydrocephalus support groups I belong to, and the connections I’ve made on social media, I’ve found these two groups here in Australia, to help support my navigating the brain injury I’ve been left with.
The brain injury community and Synapse Australia’s brain injury organisation.
The brain injury has left me feeling mostly overwhelmed, leading to suicidal ideation (at times) but mostly, cognitively impaired. This is where SURVIVAL mode is kicking in big time! I’ve had to learn what my triggers are and how to manage them. (I’ll attempt a post on this later). It’s worse than just managing my treatment option (Shunt and/or ETV). For now, I attend weekly calls with other brain injury survivors: feeling validated, listened to and unburdened. This is a crutch until I can hopefully get proper rehabilitation, starting in October.
That’s the purpose of finding your tribe…
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