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Laughing in the face of the “worst-case scenario”

Posted Dec 30 2010 8:59pm

Hey, everyone. I have a new $5 word for you: nystagmus. Now, before you run off to look it up on Wikipedia, give me a chance to tell my story.

Over the past six weeks I have been experiencing a weird sensation when I look at something up close, including my cell phone, books and, on occasion, a computer monitor. What happens is my eyes twitch back and forth making things I see a bit blurry. I feel eye movement and the motion leaves me with a bit of tension in the middle of my forehead. Over the course of a day this sensation builds up into a headache or a dull throb between my eyes. Weird, right?

Well, about two weeks ago I went to the optometrist office (at Kaiser) and ordered new contact lenses. I had been putting this off since before my wedding when I purchased new glasses. Anyway… after I ordered the contacts I asked a receptionist if there was an optometrist around who was on break who could answer a question. She found a doctor for me and he brought me into his office.

This was not my regular eye doctor and he knows nothing about my medical background. As I told him about what I was experiencing he began to look worried. He said, "Are your eyes moving from side to side or up and down?" I said, "Side to side." He sighed, and said, "Well, I can tell you this has nothing to do with your eyes. What you are explaining to me is characteristic of a condition called nystagmus and it has to do with your brain." He looked uncomfortable telling me this because, really, who likes delivering bad news?

At this point I stopped him. I said, "Oh, well, there is something you should know about me before you go on. I have brain cancer. And epilepsy. So…"

It’s one thing when you tell a new person about your cancer, but I always get a completely different response telling a medical professional about my condition. I can see in their eyes a bunch of neurons firing as questions become answered and new questions/concerns arise. They treat me differently (in a good way)… They are no longer in the position of "the doctor who knows everything." They become curious and almost excited wondering how their specialty interacts with the novelty presented before them. And I secretly love this. (I guess this is no longer a secret.) Why do I love this? Because I am no longer a normal, 31-year-old female in good health. I am now someone they can learn from and this means they will treat me with extra attention and respect.

The doctor said, "When was the last time you had an MRI?" I told him it was a month ago and that there were no changes. I then told him that my tumor is in the left parietal lobe and that from my understanding vision is controlled by the occipital lobe . He said that is mostly true but there are other parts of our brain that play a role in our vision. We then proceeded to geek-out on brain terminology for a few minutes before he busted out a thick medical volume about optometry. He scanned the index for nystagmus and read a few passages to me.

He said, "Normally when someone comes in with this problem we refer the patient to a neurologist–" I told him I have two neurologists. He said I should make an appointment with one of them to get the problem evaluated; it sounded to him like something had changed.

I asked him to write the word "nystagmus" on a piece of paper so I could look it up. We shook hands and I went home. I have a neurological evaluation scheduled for next week.

Now you can look up the word nystagmus if you want. I already have. With this condition the worst-case scenario is that you could have a brain tumor.


I already knew that.
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