My entire life I have been terrified of throwing up. Nobody likes throwing up, but I cross over into hysteria if I even think about the possibility of puking or if there is even the slightest chance that I have come into contact with someone who has the stomach flu. It is a completely unrealistic fear, but feeling nauseous sends me into a frenzied panic. I feel like I won’t survive if I throw up. It’s that intense. Don’t ask me why. It just is. Always has been. I have had more panic attacks than I can count in regard to throwing up. They go all the way back to my childhood.
Somewhere in my early childhood, I began developing mantras to help me calm down when I felt sick. The one I chanted most frequently was, “I can’t die from throwing up. I can’t die from throwing up.” I still use the mantra today. I rehearse it again and again to decrease the anxiety associated with being sick because feeling anxious only contributes to feeling nauseous. The anxiety only makes me feel sicker. The majority of the time I don’t know if I’m actually sick or if it is just the anxiety and panic feelings about the possibility of getting sick that is making me feel ill. So, I chant as a reminder that even though my brain is telling me I am going to die and I feel like I might, I am not actually going to die.
As I listened to Dr. W begin to describe what was wrong with Gus, I couldn’t help but think about the fact that my son could actually die from throwing up. The disorder he has is genetic. It’s an autosomal recessive trait which means that both me and his dad carry the defective gene. I carry the genetic marker that is responsible for his illness and I couldn’t help but notice the irony in it. Perhaps my fears of throwing up had been grounded in the unconscious knowledge that I carried something inside me that is the most threatening when the body becomes severely dehydrated or ill. It didn’t escape me that I had spent my entire life fearing throwing up and now I was getting confirmation from one of the most brilliant minds in the country that it was a realistic fear. You really can die from throwing up. At least in the case of my son.
In January, when Gus got so critically ill, Yancy and I got into a huge about taking him into the hospital in the middle of the night. The part that I forgot to mention in my previous account was that Yancy is very aware of my abnormal and heightened fears of throwing up and figured that I was so freaked out about Gus because of them. I had let Yancy calm me down and reassure me like he has so many times in the past that throwing up was nothing to be afraid of. He guided me back down to reality and assured me Gus was not going to die from throwing up. Except that he was. Right in front of our eyes.
The defective gene that we carry which we have passed onto our son is extremely rare. So rare that only a few hundred people have ever been diagnosed with it. It’s a defect in the enzyme, mitochondrial acetoacetyl-CoA thiolase. (What kind of language is that, right?) Dr. W explained that most people who have been diagnosed with it are related, usually first cousins.
“Maybe we’re related.” I blurted out as soon as he made the relative statement. I couldn’t help myself. Nobody laughed. Nobody even smiled or said anything. I tried to smile because it was kind of funny that my black husband was somehow my first cousin. Dr. W went on to show us a diagram like this:
The circled number four is the part of the metabolic process that doesn’t work like it’s supposed to in Gus. I kept thinking, “I gave this to him.” I wasn’t blaming myself in a self-pitying way, but simply acknowledging that I had given him this problem just like my genes were responsible for his big, square head and his angular, defined jaw.
Dr. W continued to explain that if we had another child it would have a 1 in 4 chance of having it. It was easy to do the math in my own head about Gus’s children. My grandchildren will have a 50% chance of inheriting it. This thing. This thing that nobody really understands. That only a handful of people have ever had. It’s not going away. It’s in our family. We birthed it and it is here to stay. For the first time in my life, I’m not afraid to throw up. Instead, I’m afraid of him throwing up.