I don't disagree with anything that's been said here, just want to add my perspective to the mix...

I abhor profiteering as much as the next gal, whether it's wall street, war or pharma. And I won't pretend to understand pharma business models. But I want to add that some of my best friends work in pharma. My neighbor and devoted kids' basketball coach is a top lawyer for Pfizer and an internal advocate for drug assistance programs. Another dad, whom I know from my boys' preschool, is a director of cooperative research for an Ivy-League University that partners w/ pharma. His wife is a scientist and writes clinical trial protocols. Other neighbors put 70+ hours a week in the University labs while trying to parent and hold marriages together. Yet another friend, who was the Director of Cancer Research at Bayer, now works as Chief Scientific Officer at a cancer-focused foundation. Both of our sisters died of cancer within months of one other.

ALL of these people are motivated by a love of science and the desire to help people through innovation and discovery. I used to laugh to myself about how driven and workaholic they were in comparison to myself. I don't laugh now; I am so grateful for their intelligence, passion and hard work. All of these people also contribute to charity and, while not all of them are "rich," one recently gave me $50,000 to serve people with disabilities. Just sayin'...there are lots of people in our corner.

I do not even try to "pretend" everything is all right. It's obvious that it is not. At 45, PD has ended my career and income, depleted my boys' college fund, destroyed my hobbies (flute, illustration, calligraphy, performing), devastated my body, complicated my sexuality, and frightened my children. Nor do I have faith that science or God will come to the rescue in time to restore my health. That said, I do hope that they will. So as not to go mad with worry, I also choose to believe that there will be a cure before my children are my age lest they have the mutation I do.

But here's what I do have. I have loving and generous friends. I have my adoring partner and my little boys. I have the seasons and beauty and poetry and time to enjoy them. I have a heightened awareness of the suffering of others and our connection and responsibility to one another. I have restored trust in the inherent kindness of strangers. I have faith that our doctors and scientists, while they will not always succeed in delivering on our hopes, do care profoundly and are trying their best.

I also believe that, for me, this is better looked at not as a battle to be won but as a small reflection of the universal dance between life and death, creation and destruction. On a good day (which equals peace more than mobility) I just want to dance it as beautifully and consciously as I can. We all will die one way or the other; it's how fully we live and love that matter. On a bad day, my faith is based in the knowledge that this day, or hour, or moment, shall pass. I just need to be patient. And, while I am not rushing my demise, I am comforted by my sister's final words to me, "Don't hold me back, sister. It's all spirit now."

Live to love if you truly love to live!
-Rose