It started with a whooshing sound in my right ear. It sounded like my heartbeat or like what you would hear during a sonogram. I heard it constantly, even when I was trying to sleep (which is why I hardly slept for weeks). When I sat next to other grad students at lectures, I was convinced that they could hear it, though they gave no signs that they did.
I went to the general practitioner that I normally go to. "It's just ear wax," he said. He cleaned out my ears, which was very painful. "The sound will go away in a few hours." It didn't.
He referred me to an ear doctor, who said that my eustachian tubes were stuffed up due to a minor cold I'd had. She made incisions in my ears to clear up the tubes (a procedure that was also very painful), and then my ears were in pain for several days afterwards. She said the sound would go away in a few weeks. It didn't.
Then my vision became impaired. It became a strain to watch TV, even if I was just sitting across the room. It was difficult sometimes to see everything outside without squinting. I thought it was the sunlight and that I needed to wear sunglasses. But one night I was walking around outside and I realized that the lights were blurry even then.
I also had headaches every day. I realized that it was time to see another doctor. This time I went to an optometrist at Lenscrafters for an eye exam. "This is what your eyes looked like last year," she said, showing me the pictures. "This is what your eyes look like now. You need to see a specialist right away."
That same day I went to a specialist who wasn't covered by my insurance. He charged me two hundred dollars for a ten minute consultation. He said that I needed to go to the emergency room right away, because there was something seriously wrong with my eyes. That was when I got scared.
That day I spent more than ten hours in the emergency room. I went there at 2:30 in the afternoon and didn't come out until almost one in the morning. I didn't get to eat lunch OR dinner. A kind nurse felt sorry for me and offered me some graham crackers and juice, but the doctors wouldn't let me have any; they said I had to keep my stomach empty in case I had to undergo more procedures and take more medication.
There was a lot of waiting (and freaking out, on my part) at the ER. I was freaking out because at first I couldn't get a straight answer from the many doctors that I talked to on what was wrong with me. They did another eye exam. Then they did an MRI, because at first they thought I had a brain tumor. For the MRI, they put my body in a noisy machine, where I wasn't allowed to move for an hour. I lay there the whole time, terrified.
It turns out I don't have a brain tumor, but I do have a neurological disorder. I'd rather not say what it is, but I will say that it is the cause of the whooshing sound in my ear, the impaired vision, and the headaches. It's also not a psychological problem; it's physical. The doctors did a spinal tap, meaning they put a large needle in my spine and drained fluid out of me; it was very painful (I now think of September 2014 as the Month of Painful Medical Procedures).
They prescribed me some medication, which comes with several side effects. One side effect is that my feet feel like they're falling asleep all the time. Another side effect is that soda is tasteless to me now (which SUCKS, because I love Coke). Another side effect is that it makes me tired all the time, which means I can't get a lot of work done (did I mention I have to make a huge presentation to my department next month, and my job applications are due soon)?
I left a message for one friend that I had to go to the hospital. This "friend" never responded. I left another message for another friend, who didn't respond until several days later because she was "busy" with her other friends. I managed to text a third friend, who disappeared for a long time in the middle of our conversation and then immediately changed the subject of my health to something else. With friends like these, who needs enemies? I won't be calling them again. Ever.
I even Tweeted about what was happening to me. No one Tweeted a response. Celebrities can Tweet one word, like "Uh" or "What" and get a hundred responses from fans. I Tweeted about being in the ER and being sick, and no one asked if I was okay.
My father said that I brought my neurological disorder on myself and that I am to blame because I am so neurotic (which contradicts everything the doctors said. They said that my disorder is very rare and happens to otherwise young, healthy women.). He said I must have worked myself up into a frenzy and that's why there's something wrong with my brain now. He argued with the ER doctors over the phone and forbade me from getting a spinal tap because of the risks involved. I told him that I am a thirty-three year old adult and that my decisions are MINE, not his.
My mother was very upset with me too, and she called several times to let me know how angry she was at me. The only people who showed me any compassion were two of my professors, who I had to tell because I wasn't able to meet all of their deadlines due to the fact that I was seeing more than a dozen doctors and was in and out of the hospital for more than a month.
Right now I'm feeling sad, scared, alone, and lost. The doctors are optimistic that the medication will work. BUT if it doesn't, I may need brain surgery. If THAT doesn't work, I may go permanently blind. If I wasn't neurotic BEFORE...
What about you? Have you ever dealt with something like this? How did you deal with it?
Weekly New York Minutes #22 - Every Friday (but this week delayed until Sunday!) I feature some fleeting moments from my week that made me stop… The post Weekly New York Minutes #22 a...
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