The idea for this blog, and my goal of raising $5,000 for the National MS Society, were conceived during a 20 mile training run for my first marathon. Here I will simultaneously chronicle my experience living with MS for the past decade and my marathon training progress.
Help me reach my goal!

Tuesday, September 11, 2012

Love and Luck


In the Fall of 2004, I started grad school at SUNY Geneseo.  Steve was my main reason for continuing at Geneseo, as he still had 1 more year and I wanted to stay close to him.  During the day I worked for the Arc as a life skills assistant in home for people with disabilities and in the evenings I took classes toward my Masters degree.   

I have always been patient, and my experience struggling to make my body do things I needed it to do gave me a deeper understanding of the frustration that faced the people I was helping at the Arc residences.  One of the guys with cerebral palsy, "Bob"*, would get angry if he fell.  If you asked if he was hurt, he would respond, "just my pride".  I understood where he was coming from.  As he got older, the spasticity in his muscles became worse and his mobility became more and more limited.  I could understand his frustration and we bonded.  He used to joke with Steve (who also worked in the Arc houses) that he was going to take me on a date.  

While my own disability strengthened my compassion, an important distinction between Bob's experience and my own was that while his CP became progressively more debilitating, I am lucky enough to have the relapsing remitting form of MS.  This means that while I have times where my MS makes it difficult to perform basic living tasks, the symptoms usually improve and can even disappear completely with time.  Yes, I have some irritating symptoms that just never go away, but, fortunately, my most debilitating symptoms haven't stuck around.  A little numbness?  A twitch?  I can deal with those!  

Luckily for me, the next academic year didn't bring any new symptoms.  I was able to enjoy months straight without MS rearing it's ugly head.  At first I was constantly doing a mental body scan, checking to make sure nothing had changed, but as time went on I was able to relax and just enjoy my last year as a student. 

Ch-ch-ch-ch-changes-Spring 2005

All our worldly possessions.  It's a miracle the car made it!
By the end of the Spring semester, Steve and I had decided to move to Oregon together.  He would begin a PhD program in Psychology and I would try to land my first teaching job.  For someone who had never really envisioned leaving New York State, it was a big step.  I was scared, both about moving to a state I had never visited (and didn't even pronounce correctly) and about starting my teaching career.  One thing I was sure of though, I needed to go with Steve.  He was, is, and will always be my home.  We packed the car (yep, just a little Hyundai Elantra) with our worldly possessions and drove the 3,000 miles to Eugene, Oregon. 

After 2 weeks of peanut butter and jelly, we arrived on the West Coast.  Within the next 7 days we found a place to live and I got my first teaching job.  The next month was a whirlwind of cheaply furnishing our apartment, hosting family and friends and discovering the beauty and quirkiness that is Eugene, Oregon.  

Blinded by the light-Summer 2005

A large circle of my visual field was missing.
When the month was over, I flew back to Geneseo to finish my masters program.  I moved into an apartment for the month, began my practicum (teaching reading to students in a summer program), and sold my car as fast as I could.  Once the car was sold, I was getting my exercise walking everywhere.  It was on one of these walks that I noticed something strange.  Coming towards me on the street was a bicycle with no rider.  Strange.  I turned my head to get a better look and suddenly a rider appeared.  Was this magic in Geneseo?  Sadly no, there wasn't any Hogwart's style wizardry going on.  I was losing part of my vision.  

I was stranded, with no car, unable to get to my neurologist in Rochester, but perhaps that was for the best.  If I still had my car, I might have been tempted to drive to the hospital, putting myself and others in danger.  Instead I called the MS Clinic and was told that I needed to at least go to an ophthalmologist to rule out the possibility that an eye disease was causing my symptoms.  Fortunately, there was an ophthalmologist in Geneseo who was able to see me right away.  After a couple of tests, I could see from the results that I was missing a large part of the vision in my left eye and a small part in my right.  The doctor quickly determined that it was due to my MS.  After another call to the clinic, I was able to arrange for a nurse to come to my apartment to give administer an IV of prednisone. 

While I waited for the prednisone to work it's magic, I continued to struggle with my vision.  Here I was, supposed to be teaching struggling readers to read and I couldn't even read a page.  I think I pulled it off, but I must have looked pretty ridiculous the way I was maneuvering my head and closing one eye, then the other, in an effort to read to the students.  I managed to make it through the rest of my time at the reading clinic without the kids noticing my strange behavior.

As soon as the reading clinic ended, I flew back to Steve.  Luckily, by the time I arrived back in Oregon my vision was almost completely restored.  I was able to safely drive again, and so I began the 40 minute daily commute to my first teaching job.

*Name changed to protect privacy

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