·      After a few years of being out of work I realized that all of the people I met since I moved to Manhattan never new me when I worked. I could tell them about my past achievements but they never knew me as a successful university administrator, or saw me at my peak, and this continues to make me sad.  I left work when I was only 47, and I still had much I wanted to accomplish;

·      My daughter got married in 2005 to a very nice man, who is now her next of kin.  I became a grandmother in 2008, the nicest change in my life since the day I gave birth to my daughter.  There are always positives in life and it is important to recognize and celebrate them as I celebrate my daughter’s new family as often as I can.

The changes continue to add up as my MS continues to progress and the pain continues to take a toll on my body.  But I don’t want to give anyone the idea that I have let all these changes run or ruin my life.  Immediately on leaving work I decided that this was the time for me to do some of the things I hadn’t had time to before, it was time for me to use the pain I had lived with almost all my life to do something good and perhaps help others in pain.

I founded the Chronic Pain Awareness Project to bring attention to the fact that pain is not very well understood and people with disabling illnesses and pain are facing many obstacles in life because of this.   I got involved with the MS Society/NYC Chapter and sit on the Government Relations Committee.  I have done a lot of writing, both fiction and non-fiction and hope to publish a memoir I am working on that discusses perseverance and overcoming challenges to meet one’s goals.  Most recently I was appointed a volunteer Advocacy Spokesperson for the Power Over Pain Action Network, a grassroots advocacy and awareness building organization of the American Pain Foundation. www.painfoundation.org  I have given several talks at conferences, advocated for legislation and policies that positively affect the lives of those in pain, and taped a talk show that will air on the Let’s Talk Pain website, which you can go to now and see the current episodes.

So yes, my life has changed, and it has been difficult to accept most of these changes.  On the other hand it has given me the opportunity to try new things, meet new people and do something I am proud of.  Unfortunately, while my income was good in 1998, it barely covers costs today and I am probably going to have move from Manhattan into one of the surrounding boroughs, which will limit my access and social network that I’ve put together since moving here.   But who knows, maybe I’ll sell my book or a collection of short stories and be able to stay in my lovely, geographically well-placed apartment. 

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