Blair, 38

Blair Patrick Schuyler is a writer and editor living in Los Angeles. He is the author of Adolescence Interrupteda coming-of-age memoir that serves as a motivational road map for anyone forced to confront the overwhelming reality of a daily existence without stability or safety nets. Below is an excerpt from his book, a story about family, the strength of the bond between a mother and son, and the definition of sacrifice without limits.

“There were more valve alterations, more X-rays, and more wondering what could possibly be happening inside my brain. Dr. K tried some aggressive adjustments to test whether my troubles were entirely pressure related or just the body’s attempt to heal in a dynamic internal environment. At first, the change in pressure seemed to help with my balance and stamina, but when that momentum ended and the symptoms resurfaced, the notion of a pressure correction cure-all was dismissed. Swimming in a sea of variables, attempting to narrow the field of possibilities, was a punishing practice. It seemed even science wasn’t always an exact science. It was enough to make my head spin. Pun intended.

In the middle of this hurricane of uncertainty, Dr. K said something that forever changed the trajectory of my course. During a nightly room visit, he casually mentioned that he believed a third ventriculostomy should have been successful. He felt that my condition and particular anatomy made me a perfect candidate for the procedure. Having actually looked inside my head, he was speaking from a fairly educated vantage point. He inquired about the first time it was performed and asked exactly what went wrong. I tried to be as clear and concise as possible, untying the knots within the rawness of those memories. But that incident left emotional scars that still stung. It was a dark time, and the mere mention of the episode sent me back to a pretty vulnerable space.

We were both aware of the complexity of the surgery, but the ability to eliminate the need for a shunt would certainly solve a lot of my problems. If my CSF carried excessive amounts of protein and that protein was the primary culprit responsible for the valve malfunctions, circumventing the need for a shunt altogether would be a permanent remedy.*** It was some heavy food for thought, but it was a meal I was in no condition to swallow at the time. I kept the idea in my back pocket and continued to watch the waves.

On the morning of my sixth day in the hospital, Dr. K came in to tell us I would be discharged. The situation wasn’t improving, and he felt that just sitting in the room waiting things out didn’t make much sense. He said that my healing would continue to take some patience. The brain is like a sponge and it requires fluid to function. Dr. K felt that the excess blood still needed to be absorbed by the body, and that surplus blood was what played a role in the headaches and intracranial pressure. He also mentioned that the locking stiffness in my neck was a kind of chemical meningitis. All of these ailments would improve with added rest and time, and I was asked to monitor the situation from home.

I devoted the four days before my return appointment to staying occupied and rediscovering my routine. I spent some active hours outside of the house, seeing a movie, going for walks, and testing the limits of my tolerance for movement. I certainly felt better away from the antiseptic halls and fluorescent lights of the hospital, but the pressure remained an issue. The consistent dizziness reinforced my opinion that the settings needed to be altered.

During my office visit the following Monday, Dr. K agreed to reduce the setting by 10°. He believed I would have problems if he went any lower. This was more trial and error, and the only constant marker was how I felt. I knew tweaking the levels was my only option, but it was never an arbitrary practice.

For whatever reason, modifying my valve’s settings, getting consistent X-rays to verify the adjustments were correct, and waiting to see if my health improved, all seemed like perfectly normal and sane responses to what I was experiencing. Tactical and implicit, I met each step of this process with a sense of possibility that there was some magical number waiting to take all the worry away. Hanging hopes on a lotto ticket beyond my control may not have been the most efficient means of preserving morale, but it got me through the day.

Removing ideas from my head, even in their infancy, was an almost impossible task. Notions bounced off walls like a manic game of pinball, and there was nothing I could do to quiet the bells or dim the lights. I could argue it was a form of focus, but it registered more as compulsion. This propensity for cerebral hypervigilance had regularly gotten me off my ass, but it also made for an interesting romance with insomnia.

So ever since Dr. K first mentioned the idea of trying another third ventriculostomy, I couldn’t stop thinking. The fact that I was extremely frustrated by my predicament helped add wind to my obsessive sails, but it was the logical core of my brain that was cognizant of the fact that all these procedures formed a queue on a definitive timeline. There was only so much the body and mind could bear. I wasn’t getting younger, and each revision seemed to carry with it an extended recovery period and an entirely unfamiliar set of complications. The unpredictability of life on a wire was more than I was going to accept, so a surgery to stop all the speculation started looking like an attractive proposition.”

*At the time, it was believed that heightened protein levels in the CSF could cause shunt malfunctions. However, these complications were most likely due to excessive cellular debris disrupting the operation of the valve.

To continue reading,  Adolescence Interrupted can be purchased on AMAZON.  Don’t forget to use AmazonSmile to support HA while you shop!

DISCLAIMER: This is not a publication of the Hydrocephalus Association (HA). HA is in no way responsible for the content contained therein and cannot vouch for its accuracy.


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