Here's a basic flowchart of what has happened in the 5 decades I have been breathing air on this planet:
Born.
9 months: Pediatrician recognizes hydrocephalus. Neurosurgeon installs Cerebral shunt, to relieve fluid pressure.
12 months: As a complication of septicemia, shunt is replaced. Credit a new antibiotic, Tetracycline for healthy recovery.
Child leads "normal" American boy life, with minor sociological complexities resulting from the hydrocephalus. Let's just say the mother wanted to make sure nothing bad happened to the child from an injury. The child survives until adulthood with no physical injuries, but there are some psychological costs as a result of being "different."
20 years: Remarkably, the shunt has lasted this child from a length of 20" to a height of 57". That's freakishly rare on it's own that no surgeries were required for almost two decades.
23 years: A fourth surgery is needed to make a slight adjustment on the shunt.
The man remembers a thought that his neurosurgeon imparted on him when he was first told he would need the surgery at 20 years: A delay "could result in some short-term memory loss"
I think my life changed from that instant of my life forward; because every time I forgot something, I attributed it to the hydrocephalus. Before that moment I just forgot things like everyone else.
No further surgeries are needed for 27 more years.
Age 49: something seems wrong. Dizziness, disorientation....unusual lapses in concentration, and an uncomfortable feeling like I just don't have complete awareness of what is going on around me.
This time, without an established relationship with a neurosurgeon, it takes 10 months to get to one who knows what is going on. My fourth surgery takes place on November 22, 2017.
Now in September 2018, things are not normal. My recovery is not happening as uneventfully as it did with previous surgeries, and I think my life may forever be different. For the first time in my life, I feel like my abilities and skills at the most ordinary of tasks are failing.
My confidence plummets like never before.
And I'm not getting better, either physically or emotionally. Society doesn't seem to understand, and doesn't seem to want to understand....there are rules....there are procedures.
I feel my life is being erased. My existence as a unique person with a unique situation is being replaced by a "one-size" categorization that doesn't properly fit, and my psyche is coming apart, because the only response I get from anyone is that all the problems belong to me alone. I am not wanted until I am back to being just like everyone else.
As if I ever felt that way in the first place.
Born.
9 months: Pediatrician recognizes hydrocephalus. Neurosurgeon installs Cerebral shunt, to relieve fluid pressure.
12 months: As a complication of septicemia, shunt is replaced. Credit a new antibiotic, Tetracycline for healthy recovery.
Child leads "normal" American boy life, with minor sociological complexities resulting from the hydrocephalus. Let's just say the mother wanted to make sure nothing bad happened to the child from an injury. The child survives until adulthood with no physical injuries, but there are some psychological costs as a result of being "different."
20 years: Remarkably, the shunt has lasted this child from a length of 20" to a height of 57". That's freakishly rare on it's own that no surgeries were required for almost two decades.
23 years: A fourth surgery is needed to make a slight adjustment on the shunt.
The man remembers a thought that his neurosurgeon imparted on him when he was first told he would need the surgery at 20 years: A delay "could result in some short-term memory loss"
I think my life changed from that instant of my life forward; because every time I forgot something, I attributed it to the hydrocephalus. Before that moment I just forgot things like everyone else.
No further surgeries are needed for 27 more years.
Age 49: something seems wrong. Dizziness, disorientation....unusual lapses in concentration, and an uncomfortable feeling like I just don't have complete awareness of what is going on around me.
This time, without an established relationship with a neurosurgeon, it takes 10 months to get to one who knows what is going on. My fourth surgery takes place on November 22, 2017.
Now in September 2018, things are not normal. My recovery is not happening as uneventfully as it did with previous surgeries, and I think my life may forever be different. For the first time in my life, I feel like my abilities and skills at the most ordinary of tasks are failing.
My confidence plummets like never before.
And I'm not getting better, either physically or emotionally. Society doesn't seem to understand, and doesn't seem to want to understand....there are rules....there are procedures.
I feel my life is being erased. My existence as a unique person with a unique situation is being replaced by a "one-size" categorization that doesn't properly fit, and my psyche is coming apart, because the only response I get from anyone is that all the problems belong to me alone. I am not wanted until I am back to being just like everyone else.
As if I ever felt that way in the first place.
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