Two Horrible Possibilities

I went home from the hospital just before Thanksgiving. I could barely eat anything because I choked so much. Eventually I couldn't even swallow water. My pills were coming out my trach. That means I was very close to aspirating them into my lungs, and dying. The anxiety medication helped to keep the panic attacks at bay, but worsened my breathing and swallowing problems.

On December 4, I went back to the U of M emergency room. No doctors up here would touch me. We arrived at noon, and it was 2 AM before I was settled into a room. My face was completely paralyzed. I could not close my jaw completely. I could not speak because of the trach, and I was terrified. I don't think I've even been so scared in my entire life.

Thank God, (because it was December), I had a new team of doctors. And these people were sharp. Dr. Moretti was the leading attending, and he was working under Dr. Sakuri. They were both amazing. They were both excellent doctors who went into medicine to help people (now there's a concept!). Dr. Moretti looked me directly in the eye and said, "We WILL find out what's wrong with you." And I believed he would.

December 9, 2000 was another day that changed my life forever. The doctors came in the room, and the mood was quite solemn. I was sitting on my hospital bed. My mom and dad were there with me. (They would come and stay with me the days Doug worked and then go back home when Doug arrived for 3 days every week.) Dr. Moretti spoke words I will never forget. He said, "We have it narrowed down to two possibilities. It's either Myasthenia Gravis, which there are treatments for, but no cure."

I let that part sink in; MG had been mentioned before, so this wasn't terribly shocking. I wrote on my notepad: "Or?"

He replied, "Or, it's something called bulbar palsy. It is degenerative and terminal."

I sat in stunned silence with the words "degenerative" and "terminal" ping-ponging through my brain like some macabre table tennis game.

Dr. Moretti continued on. "We will treat you for Myasthenia, since there is treatment for it, and hope that you respond. If not, we will know for sure you have bulbar palsy. I'm sorry to tell you, we are leaning toward the bulbar palsy."

I had been married for 3 months and 13 days. I was 29 years old. And my life may be ending before it truly ever began.