For those of you who've already read LEFT NEGLECTED, you know a little about NEHSA. You know that this is an organization of mostly volunteers, people who make it their mission to "bear witness to the triumph of the human spirit by helping people with disabilities and their families enrich their lives through adaptive sports." They help people who have traumatic brain injuries (like Sarah), who have amputations or MS or autism learn to ski or snowboard. They give people a sense of freedom, independence, confidence, and joy that transcends the experience on the mountain.
When I was doing research for LEFT NEGLECTED, I visited NEHSA at Mount Sunapee in NH. I met with Tom Kersey, the executive director there, and within a few minutes of talking with him, I knew I wanted to include NEHSA in my book. I knew I wanted them to help Sarah get back on the mountain and that NEHSA would help her imagine a new dream for her life. A new normal. And because of all the positive, life-changing gifts they give to people, I hoped my book would give them some great exposure---some readers would be people or know people who might benefit from the NEHSA experience. And maybe it would create opportunities for donations and raising funds.
Never did I imagine that NEHSA would be giving anything to me. So imagine my surprise when Tom Kersey and the volunteers and members of NEHSA presented me with an official NEHSA jacket and a snowboard! Sarah's snowboard--signed by everyone at NEHSA. I was so truly moved!
I now wear my jacket with great pride (and with great appreciation given all the snow we've been getting this winter!)--I'm so honored to be an official member of the NEHSA team.
Now to see if I'll ever get up the nerve to snowboard!
I just finished reading your book. It was the first book I purchased for my new Kobo (having just upgraded from a Sony eReader). I bought your book because as I was walking through a bookstore, I was intrigued by the beautiful cover, became interested by the title and then saw the quote from Jodi Picoult (a favorite author of mine). When I read the jacket, I decided to buy it because of my son.
ReplyDeleteHe has a modified left hemispherectomy (frontal, parietal and temporal lobes) at the age of 21 months. He was so little that we didn't get to hear how he felt about the right side of his world, but we do see the effects still today. He is a big 13 year old now and is as tall as me, and loves computers and video games and is a walking, talking miracle. The surgery stole his language, the use of his right limbs and his right visual field (though he still has his left occipital lobe, it was damaged by a stroke due to a hemorrhage the day after surgery). But he can walk and run (with a limp) and use his right hand for some things and he compensates very well in regard to his visual field cut. In fact, we didn't know how extensive it was until he was older and were surprised that it turned out to be a full 50% because he compensated so well. But he still lives in a left world, will only turn one direction, gets out of a dining chair only on the left and will cirlce the whole table to come back to his chair most days so he can enter it with his left side.
We see other interesting effects of living with only a right brain. Time seems to be something he struggles to understand in a normal way and clings to schedules and iteraries to order his world. He also has trouble with short term memory and organization.
He's had many surgeries to place his arm and hand in a more normal and useful position so he doesn't have the typical contracted arm and wrist that you see in hemiparesis. It has been well worth it.
Most people we know tell me that if I didn't tell them his history, they would never know anything was "wrong" except for the fact that he shakes hands with his left hand. He can play playstation, dress himself completely, is learning to type and recently just learned to tie his shoes all with one hand. He is accomplished in all areas of computer use and is fascinated with technology so we hope to help him pursue a career in this area.
I am fascinated by the brain and how it works (or doesn't work) and how it can compensate, as well as how people like my son can adapt to life after such trauma.
Thank you for writing such a beautiful novel. Halfway through it, I went and bouht Sill Alice and have started reading it today. I am an aspiring author (because I was trained as a classical musician - what other logical course would I take??) and women like you inspire me.
Please keep up the good work!
Naomi Goldstick
ngoldstick@kyrene.org
www.whatiknowtodayaz@blogspot.com
I just finished Still Alice... you made me cry!
ReplyDeleteWonderful work! Bless you!
Naomi Goldstick