Thursday, February 12, 2009

This seems appropriate - my first "hydro" talk

About 12 years ago, I constructed, designed and maintained a webpage about hydrocephalus - with my own particular slant on related issues. The site vanished several years ago, along with the account used to host it.

Fortunately, I still have the files and will post most of them here over time.

I figured today would be as good a day as any to pull out a slightly reworked version of my very first speech on this related bunch of topics - given mostly off-the-cuff at a hydrocephalus symposium in NYC. I was invited on-the-spot to join a panel titled consisting of "patients, parents and siblings."

Here are a couple of informational items for context, for things I refer to in the text below. One "interesting" experience was to hear someone with hydrocephalus who was ten years younger than me tell the audience that people of his age were "dinosaurs" in terms of the standard of treatment for hydrocephalus. On a less amusing note, several of the speakers had stories to tell in which doctors used the word "vegetable" to refer to a friend, their child, or themselves. I was the last one to speak. (I've edited out a couple of things because they would act as "spoilers" in terms of things I want to write about here in the near future - but at greater length.)

Here it is:

I wanted to thank everyone here. I wanted to begin by following up on a story related by one of the speakers here. He said that his doctor had told him that people in their twenties were the "dinosaurs" when it comes to living with shunts.

I was born in 1955. (pause) I'll save you all from having to do the math. I'm 39 years old. I'm not sure what that makes me - maybe a trilobite.

You know, this is the first time I've been to a conference like this, in which I've been presented with the technical details and medical history of the shunt I live with. I'm glad I waited this long, so I could handle it. Because, right now, I feel like I'm sitting up here with a head and neck full of antequated hardware ready to fall apart at any moment.

When I was first asked to speak here I was a little taken aback by the title for this panel. I'm not a parent. I am a sibling, but my sister doesn't have hydrocephalus, I do. That left me with "patient". I haven't been a patient related to hydrocephalus for about twenty-nine years now. It's important to note that when a crisis hits, this may be a consuming role for all involved; however, when I look back on the roles I have had on my life, the role of the patient was the least important, and in many ways the most unpleasant.

OK - Going back, I was born in 1955. I developed hydrocephalus as a result of injury from forceps used in a breech delivery. The doctor who delivered me and caused the injury told my parents it would be better if I didn't survive as I would be a "vegetable" if I did. That brings me to another thing I'd like to comment on. The majority of the panelists here have had stories to tell in which some doctor used the word "vegetable". I'd like to suggest that there is something seriously wrong with medical training - the only vegetables I know of grow in the ground - it is not something that describes any human being in any shape or form.

I'd like to make something clear - when the initial physician gave his prognosis, he was wrong on two counts. The first, is, I think, obvious, in that I did not develop any severe disabilities. But he was also wrong in his apparent assumption that a person's quality of life is dependent on cognitive or physical ability.

I guess you'd probably like to get an idea of how my life has gone. Hydrocephalus was apparent within weeks of my birth. They were able to do something along the base of the spine to alleviate the fluid build-up. This held until I was three. At that point, it became obvious that intracranial pressure was building again. That was when I had the ventricular shunt put in. This never really worked very well. I got headaches several 1 to 3 times a day - my parents had to relieve the pressure by massaging the shunt. That's how we all lived until I was ten. At that time, I developed a headache that lasted for two weeks - it turns out I had outgrown the shunt. Due to advances in the shunt technology, they did a replacement instead of a revision. I've had that shunt, with little trouble, ever since.

I developed pretty precociously in some ways. I was an early talker and an early reader. I was behind in walking and general motor development. In some ways, I was fortunate to have been born as early as I was. In the late 1960s and 1970s there was a fair body of professional literature that promoted a curious perspective. Apparently trying to resolve the dilemma presented by the fact that children with significant brain damage were in many cases developing pretty well in spite of that fact. The explanation put forth in the literature was that children with hydrocephalus had verbal and reading skills that fooled people into thinking they were more intelligent than they really were. Anyway, I was spared from that interpretation.

Testing is kind of problematical for people with lifelong neurological involvement. Neuropsychological batteries were developed for people who acquired brain injury as adults, which means sudden losses of function and generally site-specific damage. Those of us who have lifelong neurological involvement more often have disruption of function. Plus, we have no idea how our own neurological functioning departs from what is "normal". As an example - It took me forever to learn to drive. I have to look at what I write in order to avoid mistakes (computers and word processors have been a godsend). I cannot talk and make a sandwich at the same time. But a neuropsych battery fails to reveal any motor problems. The tests call for me to do one thing at a time. I have no trouble with this. I can do one thing at a time just fine. It is trying to do several things at once that is difficult.

Until school, I didn't have a lot of trouble. At that point, though, problems with my organization and motor skills started to get me in trouble. I had a great deal of trouble with printing, and handwriting was really awful to learn. My hand would get confused and write wrong letters. I would know as soon as I made the mistake, because I was an excellent speller. While I always missed words on spelling tests, I was always one of the last to sit down at spelling bees. Teachers never picked up on this discrepancy.

I never had any formal labels, but I had plenty of informal ones. "Lazy" and "unmotivated" were two of them. "Underachiever" was probably the most frequently used one. No matter how many times I wrote and rewrote something, it looked like something put together at the last minute. So I started doing things at the last minute, since it didn't seem to make a difference. Finally, I stopped doing most of my schoolwork. I loved learning. I hated school. I would fixate on certain subjects and read everything I could get my hands on dealing with it. My fixations seldom had anything to do with what I was supposed to be studying.

It seemed fitting to sort of lead off with this - my first public foray into wrestling with these issues in public.

But I promise the next post will be something new and not recycled. --Stephen Drake

No comments: