Most of the time I am able to keep a pretty positive outlook about my life and the challenges I have had to overcome over the years.  If you have read my Blogs in the past you know that I have lived with chronic pain for 47 years, have had 3 lumbar spine surgeries and 1 anterior/posterior spine fusion.  In addition, I was told in 1980 that I probably had Multiple Sclerosis (MS), and in 1996 this diagnosis was formalized.  I managed to keep fighting through the pain and progressive symptoms of the MS, which is a disease of the Central Nervous System (CNS), which affects various parts of the body, depending upon where the MS lesions are on the brain and spine, and often becomes disabling over time.

I thought I could beat the odds and continue to live my life as I wanted; as an active, single mother, vice president of a NYC institution of higher education, a woman who liked to travel and do things with friends, and manage to tolerate the increasing pain and progressing MS symptoms.  And then my world fell apart!  In 1998 my body began to manifest symptoms that included what I can only call full body spasms.  I would end up with my legs in tight spasm up behind my back and my arms drawn up in front of me. When this began to happen at the most inappropriate times, I knew I had to rethink my employment status.  Things were clearly getting beyond the point that I could control and work through them, and it was time for me to leave work and go on disability.

I was distraught, but I did as I always did, I smiled and went on.  But underneath this façade of developing a new life were depression and constant questions: Who am I? What am I going to do? What value do I have to society? How do I maintain my self-esteem? What about my daughter?

I got involved in the American Pain Foundation and the Multiple Sclerosis Society/NYC Chapter, and began to write fiction and memoir.  These activities filled much of my time, although I still had to deal with all the loss I had experienced; my job and income, some friends and close relationships, financial status, self-esteem and confidence, independence because I could no longer drive, and the general sense of fear over what the future held and how I would deal with it.

 In addition, my daughter got married and had two beautiful little boys (now 1 and 3 years old), so I also had to deal with the loss of the close relationship I had with her, which is natural but still difficult.  And I soon realized I was not going to be the Grandmother I had dreamed of being. I cannot run and play with the boys, it is difficult for me to hold them, and my daughter and son-in-law are naturally uncomfortable leaving them alone with me.  Maybe when they are older and more independent.  But over the years I feel I have managed to adjust, if not accept, all of these changes and was living a pretty full life.

And now it is 2011.  I am dealing with a major increase in pain, progressive MS symptoms (sound familiar), as well as new medical problems that are as yet undiagnosed.  I thought I was finished with these feelings of frustration, of feeling like doctors are dismissing me because they don’t have an answer.  I saw three doctors the other day for this new problem, my body is tilting to the right quite significantly and I cannot prevent it.  I came home and cried for 3 hours, thinking, “Here I Go Again!”