Living With Wolfram Syndrome – Adam Zwan

Running Out of Senses

Wolfram Syndrome patients, like me, suffer from optic atrophy and deafness. It’s a belief that deaf and blind individuals rely on their other senses to experience life. A great example is Helen Keller because she had to depend on taste, smell, and touch to accomplish all of her lifetime endeavors. Unfortunately, vision and hearing are not the only senses that Wolfram patients struggle with.

In my case, I have lost most of my sense of taste and smell so those are two areas I cannot rely on to live a daily routine. As far as food and drinks go, it’s not really the taste that helps me distinguish what’s for dinner but the texture. When I cook a meal I use seasonings not to change the taste of my food but to create a crispy coating that satisfies my mouth with a crunchy texture. When it comes to drinks, I’m not able to acknowledge how sweet, salty, or spicy a beverage is but how silky, smooth, or grainy it feels on the tongue.

My sense of smell is even weaker than my sense of taste but I try to think of it as an advantage in some cases. Sometimes when I am preparing some food for myself there is an aroma that everyone except for me can sense. Whether I am burning my food to give it a crispy texture or I am gathering roses for Valentine’s Day my sense of smell makes no difference. On a lighter note, I am thankful I can’t smell after my father eats Mexican food and or a person smells like he or she works in a perfume factory. If I live past the life expectancy of 28-31 years-old there is a chance that Wolfram nerve damage will spread to my brain stem and result in paralysis, which would end my sense of touch. Again, it is unfortunate that I cannot rely on any of my senses except for touch but I make it through the day by reminding myself of every positive factor associated with Wolfram Syndrome, like not being able to smell rotten eggs on Easter.