Alexandra's Story

I think I always had an intuition that something was wrong, but intuition isnt scientific and you cant just say that you would like to have a CAT scan done. But my intuition was proven one icy day at the beginning of the spring semester when I slipped and hurt myself. The next day I woke up with a terrible headache. I was stumbling on my left side and I had a hard time keeping my balance; if I sat down, I would sway to the left until I hit the wall. My vision was also bouncing up and down, almost like an old film projector. When I went to the doctors office, they gave me some anti-vertigo shots and decided that it was probably an inner ear infection. A couple of days later, I was drinking a cup of hot tea and when I looked down at my cup, I saw that one of my fingers was in the tea but I hadnt realized it because I couldnt feel anything on the left side of my body. That sounds like a strange thing not to have noticed before, but I had been really sick and had spent most of my time lying in bed. When I realized what was going on, I was terrified and I called my doctor immediately. She sent me right over to the hospital for a CAT scan. As the nurses were bringing me to the waiting room after the test, they asked me if I had been to Mexico recently. I knew then that something must be seriously wrong. I asked them why they were asking me that and they whispered behind my head (as if I couldnt hear well just because I couldnt see well), She wants to know why we asked her about Mexico. It reminded me of the way adults spell words in front of little kids so that they wont understand the conversation.

My mom was upset but I was trying to make jokes about the situation. Then, over an incoming-calls-only phone in the waiting room, my doctor told me that they had found something in my brain, pressing against my brain stem. After more tests, they determined that it was a massive cerebral aneurysm between my spine and my brain stem that was causing all of my problems. I dont know how, but I felt positive through the whole experience; I guess it was a kind of survival instinct that kept me from completely despairing.

The aneurysm was clotted off, which was relatively good news because if it still had blood flow it might get bigger and break or do serious brain damage. My doctor told me that even though I might want to get this thing taken out of my brain, surgery was a huge-and, at this point, unnecessary-risk. The brain stem is one of the most critical areas of the brain because it controls a lot of different things and there is no guarantee about what might happen if they removed the aneurysm and moved my brain stem back in place. It might be something relatively minor, like not being able to shrug my shoulders, or I might lose muscle control throughout my body.

Its hard to emphasize how profound this experience was for me. In some ways it was alienating because my condition is not obvious on the outside. For a while I was using a cane because I was having balance problems, and people would often ask me how my leg was. Once a guy was trying to sell tickets to clubs in New York City and he asked me if my leg was hurt. I explained that I had an aneurysm and he said, Well, does that affect your ability to dance? That incident was funny, but sometimes it was difficult when people asked me questions like that because it put me in the odd position of trying to explain something that had changed my world to some random person.

Its hard to deal with the fact that Im not in control of my body, that its controlled by chance and I have to put my life in the hands of someone else. The experience has been emotionally draining but it has also been energizing for me. It was spiritually strengthening to realize that I could deal with a lot and that I was happy with my life. As a photography major, I used my camera to help me deal with things. I used it as a way to ground myself in the experience, to make sure that this wasnt some dream, but also as a way to disconnect-this wasnt happening to me, it was happening to the girl in the photographs. I used my pictures to separate myself from all of the other people walking around in hospital gowns.

As a Mason Gross student, I took part in a group exhibition with the other members of my senior class at the end of the year. I had a corner in the gallery and on one wall I put a row of pictures that I had taken in the hospital. On the other wall, I put pictures from a trip to California that I had taken just weeks before Id gotten sick. When people started coming into the gallery, I felt for a moment like covering my photographs with a black sheet because I felt so exposed. At the same time, I knew that I wanted to be open about what had happened to me. My pictures were mounted on glass so that they stood out from the wall and they had only the most basic titles, like Hospital. I knew that the images alone were enough because they had captured my experience. The photographs told my story.

Last Modified 12/22/2005