· 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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Hi Denise, this is Sherry/smomdukes, I feel like now I know you. Sometimes life is so unfair, as it is in our life cases, and with all of us whos lives have been invaded by the monster. No we are not bitter, it is just the hand that life has dealt us. So we have to play that hand the best that we can. Sounds like you have done one hell of a great job and you are still going strong, you go girl!
I aint mad at you! MS has come in and taken from all of us. It took away my ability to walk, move like I want to, my independence, which I valued so very much (more than handbags). I said that I would never use a wheelchair, now I will not go out without mine, I said I would never use a cane, I have five beautiful canes, I said that I never wanted to depend on people to help me I wanted to be the helper, now I need the help. Life is so funny, but I will be all right. I stilll am able to help people, but, but at the same time I need help. I enjoyed your life story, it brought tears to my eyes, but they were not sad tears, just plain old tears. Even though we have MS, we are still human, just a little bit. Thank you for that enlightening look into your life. sherry/smomdukes
Thank you for your kind and supportive words. And for sharing a little of your story; it sounds like you have found the internal strength to cope with what life has dealt you in a way that allows you to welcome other people into your life with grace and kindness. One thing I try to remember is that many people feel good when they are able to help someone they love and don't view it as the burden that I might think it is. Each time we have to accept one more loss, whether it is something like independence or a tangible loss such as selling my house and car, it is an opportunity for us to learn something about ourselves; I haven't always liked what I learned but it helps me deal with the loss and to find some other way of meeting that need. You are so right, we are not bitter, that takes too much energy anyway. Kidding. It is difficult sometimes and I've learned that as I become less mobile and need more assistance my attitude and outlook has a big influence on how others perceive and treat me. I can't always do it but I try to stay positive and hope that is the message I send to others. Best wishes to you and thanks again. Denise