An Ever Changing Life

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Imagine overcoming many challenges in life to obtain your college degree and begin and build your career to a level of success, only to have to give it all up at an early age because your body won’t work.  Many of you reading this have done just this, as have I.  And the changes in my life that followed have been difficult and at times depressing, but as with everything, we find a way to keep on going and when possible continue to persevere.  I am still working on the persevere part and am trying to contribute to society in whatever small, but productive, way I can.  Here’s a little of how this all happened.

 I didn’t go to college until I was 23, divorced, on welfare and the mother of a two-year old little girl.  I had already had two back surgeries and lived with chronic pain, so even doing this much was a lot.  In my last semester I was hospitalized for several weeks with myocarditis, a virus in the lining of the heart, so I had to take incompletes in many of my classes and finish over the summer of 1977.

 I began my career in the university’s administration and did my graduate work at night, obtaining my Master’s Degree in 1982. I worked hard and continued to move up in administrative jobs in NY area based colleges and universities, although I had another back surgery in 1980 and continued to live with pain in my back and legs.  After this surgery, the surgeon told me there was no myelin around the nerves coming from my spine and that I probably had Multiple Sclerosis (MS).  There were no MRIs at the time and I remember the orthopedic surgeon telling me with a laugh that the only way to give me a definite diagnosis would be to look at my brain and the only way he knew how to do this was to do an autopsy.  We agreed to hold off on that procedure and leave it with probable MS. 

 In1991, I was appointed vice president of a large university.  My daughter had just started college and I felt I had finally made it; I was making a good salary and had a position that allowed me to use my skills and have the autonomy to run my division.  Unfortunately, 3 years later I was diagnosed with spinal instability and in order to keep my spine together I had an anterior/posterior fusion and I now have rods and screws holding a few vertebra together.

But I continued to move forward and knowing that I needed to cut back on my driving and heavy schedule I moved to a vice presidential position in a smaller, professional college a few months after the surgery; in fact I was still encased in a large brace and had to use forearm crutches to walk.

In 1996, however, I was having trouble with my eyesight, numbness in my arms and extreme fatigue.  Even though my schedule was not quite as demanding as it had been in the large university, I still had to be at meetings in different parts of the city and work many evenings and weekends, which began to get more and more difficult for me to do.  I went back to the neurologist who had diagnosed the spinal instability and told him what I was experiencing.  For the first time a doctor asked if anyone had ever looked at my brain.  I told him what the orthopedic surgeon said back in 1980 and he immediately sent me for a brain MRI, which showed several demyelinating lesions in my brain.  Of course there will always be the question of how much is from demyelinating and how much from my spine, but I was given the formal diagnosis of MS.