Freshman Year

I never intended to be a perpetual student at The University of Catastrophe. All I wanted to be was an ordinary wife and mother living an ordinary suburban life. And I was, until April 15th 1997. It was a Tuesday. I know it was a Tuesday because the day before I led my daughter's Daisy Girl Scout troop. We made a craft, sang a song, and had a snack. While I was cleaning up glitter I didn't know my application to the University of Catastrophe was accepted. I didn't know I was already enrolled. I expected a normal Tuesday, but that's not what happened. Monday night I went to bed and curled up in bed with my book and my cat. When I woke up Tuesday morning I couldn’t see.

I had blurry double vision and I couldn’t control the way my eyes moved. The tiny muscles in my eyes went haywire. Searing pain clenched down on my right eye -- an invisible eagle digging its talons in deep. I thought my eyeball was going to pop like a balloon. It hurt so much I thought my mind would spilt. I didn’t know what was happening. In a panic my husband raced me to the eye doctor. But, she didn’t know what was wrong with me. Neither did the next doctor. Or the next one. By this time a month had gone by. The pain had not stopped and I still couldn’t see.
I made another doctor’s appointment, with a specialist in Chicago. I had to wait six weeks for this appointment. But, I knew I was going to see the best of the best, so I hung in there and counted down the days. Finally the day for my appointment arrived. My husband drove me all the way to the hospital and I sat in the exam chair.

The doctor opened the door, stood in the doorway and said, “Huh. Well, I don’t know why you even bothered making an appointment. I can’t help you. Why are you wasting my time?” Then he turned around, shut the door, and walked away.

I cried for the next 45 minutes because I didn’t know what else to do.

Six months went by. I saw more eye specialists. The pain in my eye never stopped. It felt like a red hot barbecue fork twisted my eye in circles. Narcotics didn’t reach the pain. Nothing did. I didn’t know pain like that existed. I went to my next appointment and cried, begging the doctor to make it stop. The doctor asked if I considered talking to a psychiatrist. It couldn’t possibly hurt that badly. I needed to get a hold of myself and stop being hysterical.

So, I went to the next appointment and decided no matter what happened I would not cry. Crying makes me look hysterical. I held it together and did not cry. After I described the pain in my eye, the doctor asked if I considered talking to a psychiatrist. I couldn’t possibly be in that much pain. If it hurt that badly, I’d be crying! 

It went on like this for over a year. I saw doctor after disrespecting doctor. None of them helped me. I began to doubt my own sanity. After 14 months and 16 eye specialists, I finally gave up on ever seeing again. I could read Braille. I listened to books on tape. I didn’t need to see again. All I needed was for the pain to stop. So, I made an appointment with the 17th doctor, a pain specialist.

The 17th doctor did something so revolutionary that the other 16 doctors never even thought of doing it. The 17th doctor got a book off of the shelf and looked up my symptoms. That’s right. Instead of deciding I was crazy, he looked it up. What a brilliant idea!

He said, “Mrs. Smith I think you may have a rare neuromuscular disease. It’s so rare I’ve never even seen it before. The book says I need to run a test at the hospital, could you meet me there tomorrow?”

I went to the hospital. The doctor opened up his book and followed the instructions to perform a medical test he had never done before, looking for a disease he had never seen before. His test came back positive. He did it four times. All four times it came out the same. He diagnosed me with myasthenia gravis. Because the book told him to, he wrote a prescription for a drug called Mestinon. I took one little white pill.

Half an hour later, the screaming pain in my eye disappeared. The spasming muscles in my eye finally got the message: stop contracting! I felt the tiny cramped muscles let go. My eye felt bruised, but the searing agony was gone. I could breathe. It was amazing to just breathe. For the first time in 14 months I didn’t feel like killing myself.

And right in the middle of celebrating no longer being in pain, my eyesight came back as if nothing had ever happened. Wow! It was amazing! I saw my husband and I looked into his eyes. I saw my little girl. The last time I saw my daughter she was six years old. The next time I saw her she was eight. I saw her smiling at me. Everything I saw made me wild with joy. Grass. The sky. Ants on the sidewalk. A falcon overhead. Ketchup stains on Evelyn’s shirt. Wood paneling. I saw bricks. And carpet. I could see. I could see everything. Including the caller id on my phone.

My doctor called me back. It turns out that sometimes myasthenia gravis symptoms can serve as an early warning sign of thymus gland cancer. Two weeks after I was diagnosed with MG, the phone rang. Those MRI and CT scans I had “just as a precaution” came back positive. The doctor told me I had a tumor in my chest, right above my heart.

Instead of attending graduation ceremonies, I found myself enrolled in a whole new set of classes. Welcome to another year at the University of Catastrophe.

Sophomore Year

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I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

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