Drink Your Brain Juice

As I mentioned in my "About Me" page, a few years ago I was diagnosed with Pseudo Tumor Cerebri. It has been a long road to recovery, and I'm still not there yet. The whole experience is hard to convey, because it is not an ailment that most people have ever heard of or know anything about.

During the worst of it, I wrote a short epistolary story about the experience, and I thought it would make for a good first post.

Drink Your Brian Juice

It’s a strange day when “you have a brain tumor” is the good news.

It starts with lights. Little ones dancing on the edges of my vision, like a bunch of paparazzi hanging just out of sight. Never lasting more than a minute or two. I assume its stress. No one can say the last semester of Graduate School is not stressful.

But the lights get worse. From seeing them once a day, to twice a day, to a dozen times a day. They just keep coming. Then the headaches. Like someone grinding their knuckles into my temples. Or trying to insert an icepick just above my eye. On really bad days it’s both.

If it didn’t hurt so much I would find it fascinating. The way the lights change whether my eyes are open or closed. Sitting up or lying down. Open, they look like flickering fairy lights. Closed, they become a constant glow. Like a white lava lamp on a black background.

When it reaches the point I cannot go an hour without seeing the lights, without my vision fading out like a fog rolling in from my peripheral, I finally say enough and make an appointment with the eye doctor.

I hate being sick or injured. Hate feeling that weak. My usual tactic for any sort of malady is to walk it off and let my body heal on its own, but that isn’t working this time. I needed assurance that I am doing the right thing by calling the doctor. That I’m not just whining.

In my head I write letters, telling myself all the things I want to hear.

Dear Self,

There’s nothing wrong with going to the doctor every now and then. That’s what they are there for. Some problems do need medical help. And look, they did actually find something. Not that the eye doctor can tell you what that something is. Just that something is pressing on your eye from the back, distorting it, and causing the vision problems.

Sincerely,

Self

The eye doctor transfers me to a neurologist. Another long sit in a waiting room. Another round of poking and prodding and people shining lights in my eyes and asking me to read the letters on the board. Even the neurologist does not have a clear answer. Only a list of possibilities that could be causing the increased pressure in my brain. I stop listening to the list as soon as I hear the words brain tumor.

Really? A tumor? In my brain? Could I really have that?

Dear Self,

It’s unlikely that you have a brain tumor, but we have a very active imagination that gets away from us sometimes. What if I need brain surgery? What if something goes wrong and I lose my memory? On the off chance this does happen, here are some things you need to remember.

You are literally weeks away from graduating with your Master’s Degree. I don’t care if you have to do it from a hospital bed, you are finishing those classes. We have worked too hard to fail now. Mom and Dad love you and will always be there for you, but even without your memory you should still know that. As for your own writing (yes, you are a writer in case you have forgotten) everything you need to know is in your notebook. That’s the blue one, not the green one. It has seahorses on it.

Sincerely,

Self

After the neurologist can’t give me a straight answer, I am scheduled for a series of tests.

Get blood work done.

Go back to the neurologist.

Get an MRI.

Go back to the neurologist.

They may as well install a revolving door on the front of the hospital.

Finally some answers. The neurologist pulls up pictures from my MRI, white blobs on a black background. Like the lights I see when I close my eyes. Maybe that’s the truth. When I close my eyes I am actually seeing my own brain.

The neurologist points to a highlighted spot on the MRI. I do, in fact, have a brain tumor. He spends the next ten minutes explaining the technicalities. Where it is in my brain and how big it is, but I don’t hear anything. I’m too busy having an internal panic attack.

Dear Self,

What The Fuck! I was joking when I made that previous letter. I didn’t think I would actually have to use it. What do I do? Will I be able to finish my degree? Will they have to shave my head? Why is my hair one of the first things I think about? I don’t even care about my hair.

Sincerely,

Self

P.S. The tumor is benign.

Wait...What?

The neurologist goes on to explain that the tumor is harmless and has nothing to do with the pressure in my brain. Many people have these types of tumors and never even know. I would never have known it was there without the MRI. So, nothing to worry about.

Would have been nice if he had started the conversation with this information. Certainly would have been a lot better for my blood pressure.

When he finally gets around to explaining the actual cause of my lights and headaches, I almost wish it was the tumor. At least that has a clear answer.

Diagnosis: Papilledema

Symptoms: headaches and photopsia (the technical terms for my lights)

Long term effects: damage to the optical nerve leading to partial or complete loss of vision

Treatment: varied

To put it simply, the drain in my head is not working. My brain is creating cerebral fluid faster than its draining. They cannot tell me why this happens to some people. It just does. Because that’s what you want to hear the doctor say. We don’t know why it’s happening. It’s just happening.

Another test has to be done, but at this point I don’t even care. I just want it to be cured.

Get a lumbar puncture done.

Actually, this time I don’t have to go back to the neurologist afterwards. So long as the results come out as expected, I can start plan A of treatment.

Dear Self,

Stop staring at the little orange and white pill and just take it. Yes I know your back still hurts from where they stuck a needle between your vertebrae. Yes I know the doctor said there would be some nasty side effects. But look at it this way. You have two choices. Either take the pill that will decrease the amount of cerebral fluid you produce or it’s on to plan B, and that does not sound pleasant. It requires surgery. They will install a shunt in your brain that will siphon off the excess fluid and discard it in your stomach. Ew! We really don’t want to do that, so this pill had better work.

Sincerely,

Self

With that internal encouragement I open my mouth, swallow the pill, and pray. Because I really don’t want to lose my vision. I need my vision, and will do anything to keep it. I just don’t want that “anything” to include drinking my own brain juice.