Living With Wolfram Syndrome – Adam Zwan

Fly in the Ointment

My uncle was the head baseball coach at Tulane University for a little more than 20 years and he, my aunt and I attended the Tulane alumni event in New Orleans, LA. When I was younger I used to be the equipment manager for the Rick Jones Tulane Baseball camp every summer for about 12 years. Thus, I got to know the players, coaches, and several alumni in previous years that also attended the 2015 Tulane alumni event. I had a fantastic time but simultaneously I felt like a man surrounded by worry.

Between glucose levels, food availability, catheterization, and Gastro Paresis there was always a question and or worry in the air. I was asked every hour how I was feeling and what my glucose is. Each day and night the meals occurred at the same time to the minute making sure I do not cause any problem because I strayed off from my routine. Like usual, restaurant choices and food offering were analyzed prior to dinning so that I did not run into issues with my digestive system. Each night my aunt was adamant about having peanut butter, orange juice and crackers on standby in case hypoglycemia occurred. Before attending the alumni baseball game my aunt pointed out that she was bringing her purse packed with peanut butter crackers, orange juice, protein bars, and bottled water; I made her fall out laughing when I said “let’s forget sitting in the stands and just tailgate in the parking lot.”

All in all, I had a wonderful time talking, laughing, and seeing faces I have not seen in many years. Even though I felt like a fly in the ointment and Mardi Gras was taking place, which made it a little tough to get around, I had the time of my life and would relive it just the same.