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 others that you are not faking, is exhausting. It only adds insult to injury; literally!
The sad reality is, others are more comfortable in their own ignorance, which has a cost to you, IF you allow it.
My message to you
Always be true to yourself and never make excuses for seeking help (continuously), paying for private healthcare or advocating for yourself. Not everyone will understand your journey and, that’s OK.
Remember: You only get one life.
Regardless, I’ve enjoyed sharing my experiences and being a voice for the Hydrocephalus community, simply because I saw an opportunity to help others.
It gave me a purpose. Thank you for allowing me to fulfil it.
However, I can no longer do this. The cognitive challenges left behind, from the bleed I had during surgery #6, are quite frankly too much. The cherry on my Hydrocephalus cake!
It’s time to focus on adapting to my new norm, whatever that may be. Who knows, our paths might cross again someday. As the Kiwis and Aussies say; “See ya later!”
After some thought, encouragement and kindness from others, I’ll keep these accounts open.
Admittedly, I made this decision based on the opinion of an uninformed “medical professional”. Words cut deep and, when it’s in writing, even more so. We truly do fight more when we have an invisible condition. Other people’s perception and opinion, about the validity of what we’re experiencing, truly is their own.
The way I see it; I’ve shared enough of my lived experiences with this condition to make a dent of a difference. More importantly, I’ve done it in a positive way. Not many can say that.
None of what I share is made up. It’s not embellished for attention or to bad mouth the medical system and the people who choose that profession.
While my cognitive struggles continue, I am determined to keep advocating and spreading awareness, despite it all. It may not be to the extent I’m used to but, I’ll give it my best.
I guess you’re all stuck with me, for as long as God chooses for me to be here!