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Living With a Disability

Posted by on Monday, May 15, 2017 in Many Voices, One VU, Self-Discovery.

Carla Pax, ’19
School of Engineering

 

The summer before my sophomore year of college, I found myself in a lot of pain.  I had trouble lifting my arms above my head, dressing myself in the morning, or even being able to bend my fingers.  It seemed that every joint in my body was inflamed and screaming out for help.  I started experiencing chest pain and muscle weakness.  My nerves were tingling and I was continuously tired, regularly falling asleep at four in the afternoon.  My mother, a nurse, didn’t know what to do.  My doctor had told me that I was fine and often made jokes that if it hurt to lift my arms, then I should just keep them down.  I was angry and frustrated that I had no control over the pain my body was experiencing.  As my pain and anger grew, so did my mother’s.  She scheduled yet another doctor’s visit but with a different physician.  I resented her for making the appointment as I was tired of complaining about something that I couldn’t control to someone who refused to take me seriously.  I had decided that it was perfectly okay to live with the pain if there were no nurses laughing about the frequency of my appointments or doctors convinced I was a hypochondriac making the whole thing up.  The new doctor did some tests and told me that I wasn’t crazy.  There was something wrong with me and I needed to see a specialist.  

“I started my sophomore year of college sixteen days after being diagnosed with systemic lupus.”
“I started my sophomore year of college sixteen days after being diagnosed with systemic lupus.”

I started my sophomore year of college sixteen days after being diagnosed with systemic lupus.  Lupus is an autoimmune disease that causes increased inflammation in many different parts of the body.  The symptoms for lupus are incredibly varied, but my symptoms include joint pain and inflammation, muscle pain, fatigue, anxiety, and photosensitivity.

Even considering the top-notch health care I have received at Vanderbilt Medical Center, the main component of Vanderbilt that keeps me alive and well is the people.  The community that I have built is incredibly caring and loving.  From my 5 closest friends who have each accepted the role of mother because they continuously worry and fret over me, to my Ultimate Frisbee team who held me in their arms and told me that no matter what happened or what my body was unable to do, I would always be a part of their family.  My favorite teacher also knows about my condition and continues to check up on me while reminding me that I am stronger than I have ever believed.  I have also received support from the Equal Opportunity, Affirmative Action, and Disability Services office as I struggled to understand what I would need to succeed in academics despite my chronic conditions.  They helped me to communicate with my professors about any accommodations I would need due to doctor’s appointments or illness flare ups.  These people keep me sane in times of stress and can make me laugh more than I thought humanly possible.  Their support makes the day-to-day problems easier to handle.  

On an average day, I go to sleep early and enjoy seven to eight hours of sleep.  I then wake up and get ready for class.  This includes taking my medication, getting dressed, and putting on sunscreen.   Recently to reduce inflammation, I have started to avoid all inflammatory foods like gluten, grain-fed meats, and dairy.  My favorite and most frequented Vanderbilt dining area is Bamboo Bistro located in Alumni Hall.  The building itself holds a lot of memories for me because I sat on the patio there to call the Vanderbilt Psychological Counseling Center and confront my anxieties of developing psychotic side effects from my medication.  My friends and I frequently meet up there to catch up and the servers are very close to having my order memorized.  I will usually spend a pleasant afternoon eating and studying in Bamboo Bistro before retiring to my room.  

I am incredibly lucky as my symptoms are mild and almost completely controlled by medication, exercise, and healthy eating.  This and the experiences that I have had at Vanderbilt have allowed me to identify Lupus as a non-defining characteristic of a very happy life.  

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