Posted in College, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Invisible Illnesses, My Life, Rare Diseases, Thankfulness

Normalcy – Thanks for seeing beyond my disability

Normalcy is defined by Webster as “the state or fact of being normal.” After being diagnosed with Complex Regional Pain Syndrome also known as Reflex Sympathetic Dystrophy, my life was far from normal.  At sixteen, while my classmates were getting learner permits and driver licenses, I was being diagnosed with a rare chronic disease and getting lumbar nerve blocks and epidurals.  While my classmates were anticipating their senior trip, I was preparing to have surgery.  When everyone else was worrying about not making it to class on time because of the long walk across campus, I was attempting it on crutches.

Then I got a Pride mobility scooter.  Although many classmates thought it was cool and wanted to play on it, life still wasn’t normal.  While others were parking on ramps because it was the closest place to the dorm door to park while unloading their belongings, I sat in the cold snow and rain because the only ramp to the dorm had a car parked on it.  On one occasion a campus police officer was a gentleman and waited to hold the door open as I exited the building.  When I rolled down the front deck, I came around the corner and there on the ramp set… yes he had just held the door for me and now I would to have to sit ten minutes waiting for him to come back and move his police cruiser off the ramp.  When I would call campus security to complain about a car on a ramp, they would come out, run the tags, call the owner of the car to tell them it needed to be moved, and wait with me until the person came to move the car.  Sometimes the officer would have to call more than once.  When the person would finally come to move their car, the officers usually laughed and joked with the person and warned them not to park there in the future, but since tickets were never written, no one seemed to take the warning seriously. A few times, more than one officer reported and I heard them talking between them about not being able to write a ticket because they didn’t have a ticket book or that the spot wasn’t painted to indicate it was a handicapped ramp. I wondered why an officer would report to the scene of an illegally parked car without a ticket book and why wait for the driver to come move the car if you are going to make jokes and make the ordeal seem insignificant.  It all seemed a little strange to me.

You would think going to class would be normal for all students, but my professors couldn’t even allow me to be normal student. I’ll never forget the first day of math class when the professor said with excitement, “I’ve never had a handicapped student before!” How was I supposed to respond to that? “Oh, I became disabled just so an idiot like yourself could feel rewarded having taught a handicapped student.” No, I didn’t really say that.  Instead I just smiled and overlooked it that time. After I decided to major in education, I had to take a class on including students with differences in the classroom without drawing attention to them.  I learned a lot in that class. The very first day, the professor pointed out that we all have lots of differences and that everyone has a disability of some sort…some are just more visible than others.  However,  for every disability, regardless of what it was, the professor used my name for the student in her example.  I can assure you I didn’t just imagine this.  When the professor wasn’t in the classroom, classmates commented that they had noticed the professor always used my name in her examples.  I must admit, that while I found my math professor’s comment slightly offensive, I was highly offended by the professor that was supposed to be teaching me how to include all students in class without drawing attention to their differences.  She certainly did not make me feel equal to the other students in class.

Then came the day that I was normal for a brief moment.  After ten years, I don’t remember her name, but I’ll never forget what she did.  I lived on the bottom floor of my dorm in a handicapped accessible room.  This classmate lived somewhere in the same building on a higher floor.  We often “walked” together to our science class.  Our class was on the fourth floor of the science building and as we approached the door one day, she looked over and asked if I was going to take the stairs or the elevator. I looked over at her thinking she was just being funny and realized she was asking that question seriously.  I couldn’t believe what was happening.   I felt as though my eyes and ears were deceiving me. There I sat on my three-wheeled Pride mobility scooter and I was being asked if I was going to take the stairs.  She was able to look past my disability, overlook the fact that I was using a mobility scooter, and ask me the same question she probably asked other classmates all the time.  Thankfully, she had a sense of humor because  I replied, “I think I’ll take the steps today.”  Then I patted the front of my scooter and asked, as seriously as I could, “How do you think this will do on the steps?”  She said, “I’m so sorry.  I forgot!”  I explained no apology was necessary and told her how good it felt to be treated with kindness and seen as a person not a person with a disability.  We both laughed as we entered the building and climbed on the elevator.  I may not remember her name, but I’ll never forget the day she saw and treated me as an equal…the same way she would see/ treat any other classmate.  She was able to overlook my physical disability/differences.  For that brief, unexpected moment of normalcy I will always be grateful!



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