Living With Wolfram Syndrome – Adam Zwan

Strange Truth

Do you live a risky life or do you fly straight and narrow?  After being diagnosed with Wolfram Syndrome I began paying close attention to my surroundings and the lives of others.  Strangely, it became clear that individuals who live life without taking chances or making risky decisions end up with the dull side of the blade.  Unfortunately for people who avoid trouble and mischief, consequences are paid with permanent life changes.  On the other hand, those who live on the edge seem to have a little more fun in their lifetime; these individuals may be faced with consequences but the price is paid and the risky lifestyle is continued.

For instance, when someone bends the rules a little bit or even breaks a law, like drinking and driving, he or she gets caught, pays some fees, and is able to repeat the same mistake again.  After paying the consequences a risky person will look back and say “it was fun and maybe I’ll try it again.”

For someone like me with Wolfram Syndrome risks may involve eating a certain food or exercising later in the evening.  Thus, these small risks end in the emergency room with doctors telling me “it is a wait and see process and we cannot give you pain medication because it will make things worse.”  I have never broken any laws or made my parents worry that I might cause trouble but I have experienced hardships, sacrifices, and limitations throughout my whole life.  Whether it is a sibling, a friend, or someone you read about, it appears that lifetime consequences are faced by individuals who least deserve them.

When my mind is filled with thoughts of jealousy I just go to the gym sweat until my mind is clear, exercise until it hurts, and make sure I don’t have enough energy to think when I walk out the door.  People tell me all the time that I am a good guy and do not deserve all the issues I am faced with.  The only thing I can do is reply that life is not always fair and those who can rise to the challenge and beat the odds can make a wonderful difference in the community.