Aspirations and Realities

For many years, I really had no aspirations outside of my recovery goals. Aspirations were never really recovery goals and so I never set any goals for that. I believe it was because the goal of going back to work never materialized until now. When I was a lot worse than I am now, there was a lot to contend with on a daily basis. Being able to turn my head was a goal with no date attached to it. Days would be filled with moving my head back and forth and up and down.

Reality

There was no looking ahead to better times. Mostly because the future was an unknown. The brain is a very misunderstood organ. When an arm is broken, a cast is put on and 6 weeks later it’s healed. My brain is missing part of the cerebellum and can’t grow back. The brain makes up for deficiencies by using other parts of it.

When people use the phrase, are you brain dead? I have to say partly, and everyone laughs. My brain doesn’t regulate the spinal fluid in my head. This can cause it to have too much, or too little fluid inside my brain. Then pain gets worse or goes back to my normal state of pain. The medications I take are to correct for the other automatic functions like my blood pressure, seizures, and breathing. Apparently, the medicine works.

There is a tube in my spine that drains the fluid from my head. A magnetic valve is attached to it to adjust the flow. Metal detectors don’t detect it so I can’t whip out the card the doctor gave me to prove I have the valve. That was a little disappointing. It will get clogged at some point in my life. The only way to tell is if I start to feel a lot of pressure in the back of my head. Pressure would build and put pressure on my brain stem and that is not a good scenario. That is not a goal, but something I can look forward to.

Alzheimer’s runs in my family. My brain is already bad and I can’t wait to see how that goes. I think it was my Great Aunt Mae who famously said that she had to take a shit from here to the moon and as a result, we all had to leave. I don’t remember how old I was, but I know I didn’t want to see or hear what a shit from here to the moon looked like or sounded like. There would be plenty of that later in my life. Since I don’t know you, that’s all I’ll say about poop stories.

A funny tangent

Speaking of the tube and valve in my back. You can feel the valve under my skin. It is a little strange. We were at my brother’s house for a BBQ. Sitting on the couch waiting for my steak to get done, I suddenly feel a liquid dripping down my lower back. In my mind it was going to be blood because I still had the stitches. My assumption was wrong and it was a clear liquid, spinal fluid.

My steak

The liquid dripping down my back is not what I was upset about, it was the fact that I didn’t get to eat my steak. At this time I was still getting used to eating without the hospital taste in my mouth. Needless to say I didn’t get my steak and instead got to spend the night in the hospital, a Seventh Day Adventist hospital that doesn’t serve meat and I spent a lot of time at this hospital. This became my hospital in California because one of the best neurosurgeons in the country was at this hospital. Still, no steak.

Cause of the drip

Spinal fluid is highly susceptible to infection and consequently the hospital made me wait outside in the parking lot of the emergency room until I could be seen for fear of infection. Finally I get in there and they put me in the hallway away from the other patients. It was a little strange to be in the hallway. The doctor looks at it and says the stitches weren’t tight enough and the fluid leaked out. It’s OK for spinal fluid to roam free because it just gets absorbed by the body anyways. For just-in-case purposes, I remained in the hospital and they put me in the transplant ward due to it being the most sanitary part of the hospital.

Crisis averted

There ended up being no infection and I got to go home after a day or two I think. The valve the doctor installed was a bit of an experiment. There are more stories about this aspect of my experimentation.