There’s no manual for surviving, or living with, hydrocephalus. The effects of the condition, and the consequences of treatment options, touch every aspect of a person’s life. Also, we all experience the condition differently.
I still maintain, how YOU feel about YOUR own journey, is up to YOU. Don’t let anyone tell you how to feel, act, or respond.
It’s unnerving. It imposes next level isolation. There’s so much frustration, and feelings of helplessness, as you float between living and simply existing. To top it all, there’s the added complexity of the condition itself, filled with plenty of challenges, and unknowns. Some more so than others.
In the face of adversity, when you feel like giving up, hold onto this:
“The path to our destination is not always a straight one. We go down the wrong road, we get lost, we turn back. Maybe it doesn’t matter which road we embark on. Maybe what matters is that we embark.” – Barbara Hall
Personally, when it comes to living with an incurable condition, I would prefer to disembark. But, since that’s not an option, I pray for resilience to persevere as best I can. At least until I reach my (final) destination…
Something that, ironically, does not scare me half as much.
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