2 weeks ago, I had ICP Monitoring done (only my 5th Hydrocephalus-related surgery since being diagnosed just over 11 years ago). There were 2 things of note, amongst others, I took away from that experience:
- A nurse who looked at me surprisedly when I told her I have Hydrocephalus and uttered the words “But you don’t have a big head“.
- My baby brother who said, “So tell me, Sis, will you ever stop having these operations?” as if willing me to control the outcome.
To the nurse, I smiled and politely explained that I wasn’t born with Hydrocephalus but developed it after having viral Meningitis twice, as a teenager and 7 years later as a young adult. I explained how it caused Aqueductal Stenosis leading up to my diagnosis. She had clearly only dealt with infants/children who have “big heads”, due to a build-up of Cerebrospinal Fluid causing Hydrocephalus. Their head circumference increases because their skull has not yet fused and there’s quite simply room for growth. I was slightly amused by her reaction and to a certain degree “expected” her to know better. However, I reminded myself in that split second that, even medical professionals get it wrong and don’t know everything there is to know about this condition.
I chose to see it as an opportunity to impart some knowledge to educate her and, she received it with gratitude.
As for my 34-year-old (baby) brother, what can I say? We probably don’t keep in contact as much as we should but I don’t really think I can explain this condition any better or in more detail to him than I already have. In fact, it made me realise that there are so many people who probably “listen” in exactly the same way. They hear what you’re saying but, they don’t actually listen and more importantly, understand the full impact of the words, “There is no cure just treatment through brain surgery“.
I can only explain the reality of this condition so many times to someone, the fact of it being incurable, that is. I don’t take offence to family or friends who don’t know as much as I’d like them to, about this condition and how it affects me. There are so many things we (people living with Hydrocephalus) have to struggle with and so many obstacles we have to overcome and, this is a very small part of it all. Admittedly, there was a time where I felt like my family not understanding this condition as well as I do or knowing exactly how it affects me was a sign of them not caring. I don’t feel that way anymore…
Then, after a chat recently with one of my closest cousins (I regard him more closely as a brother), he pointed out the crux of the matter to me.
“Anyone who does not follow along on your journey, and makes the effort, won’t understand your pain or this condition. They will be left behind and you don’t need to feel guilty or responsible for the situation”.
I love my brother dearly but, just like most other members of my family and friendship circle, they just don’t get it…the reality of living with Hydrocephalus. And…I’m OK with that.
It’s hard enough to navigate through doctors who have a god-like complex and don’t listen, having to get back up when you’ve been knocked down by a label of “depression” when you seek medical help, finding the strength to carry on and just trying your best to be a normal (functioning) member of society amidst your physical and cognitive challenges. The list goes on…
The sad reality of the situation is, we’re probably all equally guilty of doing this at one time or another. Every person is fighting a battle of their own, regardless of how big or small, that may seem to the next person.
These are just a few Hydrocephalus Facts I’d like to highlight:
- Not everyone is born with it.
- Anyone at Any age can be diagnosed with it.
- It’s an incurable, life-threatening condition which is Invisible to the naked eye.
- Shunts and ETVs CAN and DO fail (outside the norm). This requires more brain surgery AND it’s not a matter of choice to have surgery or not.
- Some of us are “lucky” enough to endure only a few surgeries and go years without needing more, others are not. Same condition, different anatomy.
- When someone with Hydrocephalus says “I’m not feeling well, my head hurts” it’s not the same as a normal headache or a migraine.
- We can feel fine one minute and literally feel like dying the next. We are not being unsociable or faking.