There are two issues I would like to touch on in this blog entry. First is the concept of extremely limited life expectancy for those of us dealing with hydrocephalus. Second would be the quality of life.
Life expectancy is what we would like to be nice and long. Yet, accidents happen every day cutting short someone's life. That can happen to the "perfect" person as well as those dealing with any number of health conditions. We can also out live "life expectancy", when we have a disability. Hydrocephalus, in and of itself, does not necessarily mean a "death sentence". Though, having hydrocephalus does have it's challenges. I know, that as I age, I'm dealing with memory issues. Recall is not what it was, back when I was "knee high to a grasshopper".
Doctors are not gods, though many of them like to think they are. Some neurosurgeons are the worst, when it comes to the "god complex", and I am a very huge fan of neurosurgeons. There are very amazing neurosurgeons. There are also very mediocre neurosurgeons and there are very poor neurosurgeons.
Growing up in the sixties was a trip. Back then, I had one doc tell me, I'd be "lucky" if I saw the age of sixteen. I was 10 at the time. Well, as you read, I was a kid in the sixties. That's over 50 yrs old, and the doc was saying I wouldn't out live the seventies... Haha, fooled him.
Most people that have hydrocephalus can live a "normal" life span. I have plans to celebrate my 101st birthday, in less than 50 yrs. So, to have a doc tell you or your child that has hydrocephalus they don't expect you to live a long life, prove them wrong. Then write your own blog, or book. I like blogs, because I have a limited attention span.... Oh look, squirrel.
Oh, I forgot, there was that second part of the blog to be written. "Quality of life", is what we make it. After all, it's *OUR* life. We are the only ones that should be defining the "quality" of said life. People dealing with hydrocephalus may very well have to deal with other neurological health issues. Included in those "other" health issues would be the dreaded "depression". Depression can be a very depressing topic to talk about. Especially if you are one of those who only love "positive" people.
I will say, I'm not one of those "positive" people. I use to be, but that as a lifetime ago. A support network of friends, family, co-workers (or if you are young school mates), can all help alleviate the stress and tension of dealing with hydrocephalus. Yet, "burn out" happens. family gets "tired" of dealing with the issue of headaches and having to see their family member in the hospital. It's a strain. I know. Friends get stressed out by the roller coaster of emotions that comes from having to visit a friend in the hospital, only to leave them when visiting hours end. Co-workers and classmates have their own issues to deal with and may not have the time to visit for long periods of time. Facts are facts. So, the "quality of life" is going to be what you make of it. Good luck. And as "Spock" says: "Live long and prosper".
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