Tuesday, April 06, 2010
20.5 years ago, my life changed. In one fell swoop I became a mom and a chronically ill patient in the same day. It took 2.5 years to get the diagnosis of Myasthenia Gravis.
My neurologist suggested I contact the MG Foundation for support. I did and then a year or two later was asked to join the board. I did. I particpated in fund raisers, support groups and other aspects.
I served for 3 years on the board.
During one of those years we had a fundraiser ..a fashion show and the guest speaker was a dynamic woman who, herself, had Myasthenia Gravis.
I sat in awe of her. I was still incredibly ill and had as many days as not that I was either unable to get up, or needed assistance in getting dressed. I could not drive. (Vision and what is hardest for people to understand, my leg was not strong enough to get the gas pedal enough pressure to go beyond 25 mph.)
She had MG, she was not in remission, she *had* been as sick as I was and yet, here she was speaking to the people supporting the MG foundation, patients, family, friends and media ... a chronically ill person and the first female chief of the cherokee nation.
She spoke that day with confidence that while MG is difficult, it is not impossible to live with. It is something that is better now than it was in the 60's (and even better now 15 or so years later) and that she had hope for the future in MG care. She spoke of her role as Chief and what it meant to be a woman doing that job ..and a woman with health issues doing that job.
It all felt so undoable to me. I couldn't imagine ever feeling better. But I was determined to live the best life I could with what I had.
As the years went by, and the medications started to work, I began to understand her drive, her abilities and her passion for life.
My admiration of her grew and grew.
In the meantime, Wilma revitalized the Cherokee nation. Initiating projects like literacy and historical preservations. She was an outspoken (in a good way) advocate for women every where of every race, belief system and socioeconomic status.
This semester I picked a coarse in women's studies. For International Women's Day we did an awareness campaign. Our class had display tables of important women in the history of women's rights. I chose Wilma Mankiller for our group.
A week before the Awareness day, it was announced that Wilma had pancratic cancer. A direct result of the medications she has taken for Myasthenia Gravis (same drugs she needed to take after a kidney transplant, kidney disease being one of the many health issues she fought).
Today, sitting in class, watching a video a classmate turned her cell phone to me. Wilma Mankiller had passed away from pancreatic cancer at the age of 64.
Wilma, may you rest in peace and thank you for the influence in my life and the role model that you were to me. It is not a small thing that because of you, I knew I could do more despite MG.