It’s easy to feel powerless when you’re diagnosed with an incurable and invisible condition like Hydrocephalus. And, having to learn to navigate life with a brain injury. When life changes within the blink of an eye and your circumstances are unrecognisable. When the person staring back at you in the mirror, is more like a…
That’s it for me. I’ll be closing my social media accounts and blog over the next few weeks. But, before I go, know this: Skyewaters has been a lifeline for me these past few years. Living with an invisible and incurable condition, is a challenge on SO many levels. Having to prove yourself and convince…
My brain can literally feel like a hornets nest (most of the time). A muddled space where thoughts, memories and information, go to die (a slow death). One coping strategy, that works (for me), is to reduce my cognitive load. I’ve had to learn a few and continue to do so, as I figure it…
It’s been a while since I’ve posted anything on my website. I’ve slowed down to a crawl BUT, as long as I have words left in me, I’ll continue to speak out about the effects of Hydrocephalus and Brain injury. To bring you up to speed in a nutshell; the bleed during this surgery left…
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…
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…
2 years ago I posted this: There’s always risk with any operation. Despite having a brain bleed during surgery last week, the reason for the blood in my CSF, I feel fortunate to just wait it out and have the blood clear. The discomfort and side effects of nausea, headaches and general unwell feeling, are…
There are so many reasons why this happens to people: Concussions, domestic violence, sports injuries, motor vehicle accidents, etc. And yes, even brain surgery. You (literally) go from one moment to the next…injured beyond your own understanding. Like a butterfly, you have a rebirth of sorts. Becoming someone else in the process. It’s confusing. It’s…
Today marks two years since my repeat ETV. An operation that placed the cherry on my hydrocephalus cake. I’m navigating a brain injury caused by the bleed I had during surgery. It’s been hard to accept. It still is. (Time, patience and understanding is what I need, especially from myself. Easier said than done). So…
A year ago today, I had a VP shunt placed. That was just less than a year after my repeat ETV (Endoscopic Third Ventriculostomy). A surgery which sealed my fate with a brain bleed (A post for another day). Statistically, shunts fail within the first year of placement. That doesn’t mean they can’t or won’t…
