Realistically, on a scale of 1 to 10, how easy would it be to forget you have an incurable condition? More specifically, Hydrocephalus.
I’ll admit, there are days where my memory issues come in handy in this regard. To carry on with life, as if nothing is wrong, is a thing of “pleasure”. Truth be told, I’ve perfected the art of putting parts of my life into little boxes over the years.
Some I open, once in a while, all the time or never.
To say I could do the same with my Hydrocephalus diagnosis, would be a lie. Firstly, there’s the fact that I blog about it to spread awareness, advocate for myself and all those living with this condition, and have my physical symptomatic reminders, from time to time.
It’s virtually impossible!
Some have suggested I “switch off or take a break”, from it. They may have a point. I’ve even gone so far as to consider pulling the plug on Skyewaters and stop posting. This was met with some pushback by those who find what I have to write helpful, or useful, on their own journey. However, I am highly aware that this blog won’t last forever as I pay every year, for hosting services of my website, until I am no more.
Something that will be lost on future generations perhaps..? Or not.
Regardless, to this end, I continue in the hope of making a difference, while I’m still here. My purpose, I guess, as I try to find the silver lining to my diagnosis.
Coming back to the topic at hand. I’m sure there are some of us who could possibly forget about our situation, and carry on normally. I suspect there would be a few different reasons for this. There’s nothing wrong with that…as I always say, to each their own.
For me, as I’ve said above, there is no forgetting I have it. Added to what I’ve already said, there’s the physical reminders I face on a daily basis:
- The scar on my abdomen, which I see when I get undressed. A sight which has left me feeling very insecure at times.
- The dent in my skull where my burr hole was made, as my fingers run over it, while washing or brushing my hair. A reminder that there potentially will be more surgery in my future.
- The permanent bald spots on my head, where my hair was shaved from all my previous surgeries, like gaping holes. I’m thankful for the cover up of long hair sometimes…
I’d be the first to tell you not to let that worry you because hair grows back, but those areas on my head, which I’ve made peace with, remind me of that which lives inside. So yes, there are times when it does bother me, despite how brief, but I tell myself:
- Scars are reminders of what we’ve endured, visible or not. Some days I draw strength from them, some days I get pissed at the condition.
- The dent in my skull, there’s not much that I can do about it.
- The scar on my abdomen. Meh! It doesn’t run deeper than some of the scars on my soul!
I can’t forget I have it, clearly. Though, admittedly, it would be nice to live in a world where Hydrocephalus doesn’t exist!