Excerpt #3: Breathe

Welcome to My Life

It’s 7 a.m. The sun is up and I have been breathing for a few hours – tenuously at best – wondering if just one extra drop of saliva, if one extra scent from the bathroom soap will trigger another episode. I am exhausted. I have to focus on every swallow to make sure that my own spit doesn’t go down the wrong pipe and create another life threatening laryngospasm. What should I do?  If I seek medical care any good doctor will do a tracheotomy to stabilize the airway. I remember my CPR training; it’s all about breathing. You clear the airway. The brain needs oxygen. The body needs oxygen. What should I do? If I go to the ER and I am admitted, I may never get out of the hospital. If they do a tracheotomy and I get out of the hospital what doctor would ever think to sew my throat closed after a tracheotomy? I know it happens every now and then, but with my symptoms what doctor would put my life in danger by closing the stoma? There is great risk with heavy consequences when seeking emergency medical care for my condition.

However, it is dangerous. I can’t get on a plane right now – what if I had a spasm in the air. I may die before I hit the ground. And if I don’t die in the air, then for sure I am in a hospital because they would call 911. They would have an ambulance waiting in Sioux Falls, or in Oklahoma City, or whatever city we were flying over. I’d be given a tracheotomy and stuck in a hospital.

Welcome to my life. I survived the laryngospasm in the hotel room and went to the emergency room. But instead of seeking treatment, I just sat in the waiting area. I was in the West Jefferson Hospital Emergency Room, on the West Bank of New Orleans, Louisiana. I didn’t want a tracheotomy, I didn’t want them to get rid of the last line of defense I have. Without natural immunity – the radiation and chemo wiped it out – all I had left was my airway. So I sat in that emergency room in New Orleans. I sat all morning – just in case I need to be admitted. I could show the symptoms, present very well, and get cared for quickly. I thought I just might have to ask for help. I sat and watched as people sought care for colds. I thought, “Oh no, I do not want a cold. Please not a cold, the mucus might do me in.” I watched people go in for broken limbs, for burns. I saw a police officer bring criminals in for care. I sat for most of the day and every hour I felt a little bit stronger, it reinforced my desire to not have a tracheotomy and to breathe on my own. By lunchtime, I felt confident that I could function without medical intervention. I spent the rest of the afternoon in the waiting room.  Just before dinnertime I was back at the hotel resting. Welcome to my life, the life of one who can barely breathe.