Hydrocephalus: shame on you [Part 1]
My fellow hydro warrior - and writer - Celeste Daniels brought up a VERY GOOD point in her blog yesterday. That is, oftentimes, we have to remind those closest - our families - that it affects each of us differently. Take me for example, even though I have had Endoscopic Third Ventriculostomy (ETV) surgery, I am still prone to seizures if I am exposed to rapidly flashing lights such as strobe lights on a fire truck or a rapidly flashing Graphics Interchange Format (GIF) file. The seizures are the result of photosensitive epilepsy which causes persons that have it to have seizures resulting from visual stimuli such as the GIF file I mentioned above.
Something else that Celeste said that I completely agree with is that we should NEVER HAVE TO APOLOGIZE for the shortcomings caused by our incurable condition. For me, one of those is my short-term memory, or, should I say the lack of it? Although it has improved greatly since my ETV surgery, I still can be in the midst of a conversation and I just go blank. That scared me because of all the seizure meds, heart meds, etc. that I am on. Combine my memory issues, my chance of having seizures, and my cardiovascular disease and you see why my sister Hope and I made the decision that it might be best for me to stay here even after my rehab was completed. Oh, and just for the record, on December 26th I officially became a resident of the skilled nursing part of the facility after completing my rehabilitation. :)
In closing part 1 of Hydrocephalus: shame on you, Celeste and I agree 110% on another key point: conveying to our family and friends what we go through with hydrocephalus. It becomes a sore point with many of those in our lives and requires us to act differently depending on who the other person is. Celeste summed it up best when she said, I'll be honest and say it's hurtful and because I'm human, I've literally wished they could experience the full effects of hydro (including the brain surgery) for just a week until they get it. Amen celeste!
Honestly, I think all your sz meds are the main culprits to your memory issues. You do amazingly well in spite of that, but we should bring that up at your appt.
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DeleteI don’t dare mention my hydrocephalus to my family. When I tried to a few days ago, my father asked why I was ‘obsessed’ by it. It’s clear they have no idea what it’s like, and they couldn’t care less.