The book's title refers to Multiple System Atrophy, a rare neurodegenerative disease grouped with other neurological conditions under the general category of ataxia. Erica was diagnosed with the disease last year.
Part of the profitss of the book, which is available through Amazon, will be donated to Princeton's interdisciplinary Neuroscience Institute, whose building and research labs will be completed in spring 2003.
Erica's website notes,
In October 2010, after years of troubling symptoms, Erica Lehrer was diagnosed with multiple system atrophy, a rare, as yet incurable and untreatable neurodegenerative disease. Despite her efforts with regard to physical and vocal therapy, she progressed from an unsteady gait while using a cane to full reliance on using a walker within a year. As for talking, speaking clearly was a thing of the past, and, if possible, she found this even more devastating than her mobility issues.
In the past couple of years, she has transitioned from a person who enjoyed skiing, jogging, dancing, singing, playing the flute and engaging in lengthy conversations effortlessly with myriad folks (she was a lawyer and journalist) to one who could no longer do these things. She considers herself fortunate that poetry came into her life concurrently with the onset of her illness, as it keeps her engaged with language, allows her to express and share her experience and observations with an economy of means and provides her with a supportive community of poets and poetry lovers. While her illness has reduced her level of activity, poetry has allowed her a concentrated way to expand her universe and make new connections.
No comments:
Post a Comment