As part of my current Senior Thesis studio practice I am trying to open up dialogue about certain taboo subjects in my life. My cousin’s Multiple Sclerosis is one of them. I have recently asked her to write me an email about some of the mental and emotional frustrations that she faces.

MS is something a lot of people cannot see because most of the time this disease shows no symptoms on the outside. This makes it very difficult for other people to understand. When people look at me they do not see the pain and misery that I go through. They think that because you look okay that you feel okay. So much of this is my brain telling my body how to feel and how to think and cannot be controlled by meds or therapy. It makes me feel helpless to know that I have tried every medicine available and that none of them have worked. The doctors tell me that something should come soon that I can try again but being sick and playing a guessing game on how I will feel that day takes a toll on you. From my skin constantly feeling like it is being stuck with thousands of pins all over to my skin pulling so tight that it feels like it is being stretched like a deer hide.

People take little things for granted that I have to struggle with every day. Not being able to comb my hair cause it makes me cry because of the pain. Not being able to style my hair because my arms become weak and feel like rubber and give out. I cannot wear sunglasses when it is sunny, hats when it is cold, or sometimes a ponytail because even when you take them off they leave a pressure feeling on my head which I can still feel hours later. I cannot open jars. I cannot squeeze shampoo bottles. I have troubles concentrating. My memory is being affected. I can’t remember where I put things. I can’t remember people’s names when you pass them at the store. Sometimes I just forget completely what I am doing.

This is a disease of frustration. It makes me depressed. It makes me cry. It makes me just want to curl into a ball and fall asleep but knowing that I may wake up and fall flat on my face or not may be able to see and be worse off than when I closed my eyes is frightening. Until they come up with something to help me I just have to live life minute by minute and hope that I can function.

My cousin in 1983.