The following essay is another that’s gotten some mileage. I wrote it for English 101, published it in the _Sandhill_, USC Sumter’s literary magazine, and later published it in the book _The Marfan Writers’ Anthology_.
“What’s the whistle for?” my friend asked.
“That’s there so I can blow it if I wake up in the middle of the night and I can’t breathe,” I replied.
“But, John,” he said, already laughing, “If you can’t breathe, how are you going to blow the whistle?”
The anecdote will probably go into that list of stories which families and friends always remember, enjoying the humor for years to come. In this case, the story demonstrates how humor is vital in dealing with a terminal illness; how I have learned to counter the all-too serious nature of the situation by making the best of it. Although we laugh at the brief explanation of why I keep a whistle by my bed, the true reason is much more frightening.
It would be one thing to say that I suffer insomnia, or that I sleep too much on a standard basis. However, my sleep patterns are unhealthy in their erratic nature. One night, I may find myself unable to wake, while another night may find me desperate merely to close my eyes. On the night in question, sleep wasn’t much of a problem. I wasn’t feeling any more pain than usual, and I was sleeping pretty soundly through most of the night. When I suddenly woke up, I didn’t quite realize what was going on. I had a pain in my back, and I was sweating so much that my clothes were wet.
After lying in bed for awhile, just trying to get comfortable and to go back to sleep, I finally decided to reach over to my night stand and pick up my glasses. Straining to see the clock in the darkness, I determined that the time was about 4:00. I continued to lie in bed for a little longer. However, I finally decided that the discomfort was too much, and I might as well get up and go lie on the couch (which usually allows me to get back to sleep when I have such nights). When I pushed the blankets aside and got up, I was terribly cold and could barely move. I felt as if I were frozen, and my limbs froze with cold. Giving up, I got back into bed as fast as I could, pulling the covers up over my shoulders and wrapping myself up as tightly as possible.
After a few more minutes, when I’d felt warm enough to move again, I reached over and began to tap on the wall, hoping that Mom or Dad would hear and come to see what was going on. Tapping didn’t work, so I kept pounding a little harder, every now and then gasping out a cry that came out like a whisper: “Mom or Dad?” No answer. Again, I hit a little harder and cried a little louder. No answer. After at least fifteen minutes of this desperate pounding and calling, I decided that there was only one way I could wake them up to free me from my isolation. All my pain and fear came bursting out in a final, desperate scream.
Needless to say, before I knew it, Mom and Dad were there, and I was safe. After a while, the pain gradually subsided, and we were able to sleep soundly once again.
We never determined what had caused the pain that night, but the importance of the incident lay in the abject terror of being alone, isolated in the unfeeling darkness, feeling such unbelievable pain, and thinking that Hell can’t be much worse than this. A beautiful feeling of relief comes with freedom from terror’s grasp. The hope for such release is the only thing that keeps me going. The whistle embodies that hope. At least I have some way of keeping contact with the outside world. At least I have some way of knowing that, should I ever find myself in that situation again, I merely have to blow the whistle and the darkness will be broken by the light of parental love.