About Us

"Maggie's story is not unique.  Perhaps reading about what happened to Maggie will give you some comfort or insight into your own life experience or that of a loved one.  I have found that living one day at a time is the best strategy, as well as listening to your heart and opening to love."                                            Nancy Smith Worthen, Maggie's mom  
   


Funds from MagsArts will be used to support projects for children, artists and persons
with disabilities, continuing Margaret's love of community, beauty and art.


TABLE OF CONTENTS:  

Maggie's Obituary

Stories from the Past 

Who are Maggie and Nancy Worthen?
Why cranes in the logo?
Early story of Maggie from Caringbrige.org [search margaretworthen]

Stories from the Media

Smith College December 2011

Boston College August 2012
This I Believe, by Nancy Smith Worthen [recorded at RI public radio station WNRI April 2009]

Stories from Medical Sources

Columbia fMRI research Study 
Speech Therapy video
Speak Your Mind

Personal Statements

Poem by Rick Benjamin, PVS 
Maria Sclafani, Remembering Maggie
"Keeping the Faith"
Poem by Nancy Smith Worthen, Courage
Dorothy Devine, Visiting Maggie
Painting by Lisa Melmed 2011

Maggie's Obituary
 


Margaret(Maggie) Lucia Worthen, 31, died on Sunday, August 2, 2015 at her home in Somerset, Massachusetts, following a nine-year struggle with injuries from a brain-stem stroke.  She was the daughter of Nancy Smith Worthen,of Providence, and Paul Endicott Worthen, of Tiverton, RI.  Maggie graduated from Smith College in 2006,where she received a BA with honors in Spanish. Born and raised in Richmond, RI, Maggie was deeply committed to the care of animals.  She worked at the South County Animal Rescue League and hoped to become a veterinarian. 

For eighteen months after her stroke, Maggie was diagnosed as being in a persistent vegetative state, but after participating in a Cornell-Columbia research project, doctors discovered that she could learn to communicate using eye movement, a revelation that did not surprise her parents, In 2012,several words that Maggie spoke were recorded during a research visit to Rockefeller University in New York City. Her desire to communicate was extraordinary to all who witnessed it, and greatly informed her subsequent care and treatment.  Through feature articles in the Providence Journal and the Smith Alumni Magazine, Maggie’s story has been widely circulated, and therefore she leaves behind a large community of friends, family members, caregivers, medical researchers, as well as others who heard about her life.  Maggie was both a scientist and artist at heart. 

A celebration of Maggie’s life will be held at the Westminster Unitarian Church on the 29th of August at 1 pm.  In memory of her love of art and science, donations can be made in Maggie’s name to the Everett Company, www.everettri.org in Providence, 9 DuncanAve. 02906 and Speak Your Mind Foundation, www.speakyourmindfoundation.org attn: Dan Bacher, 2 Stimson Avenue, Box 1994, Providence, RI 02912.

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Who is Maggie Worthen? 


Rhode Island born and raised, Margaret Worthen lived in Richmond for 22 years. As a child, Maggie enjoyed science experiments and writing, gymnastics and horseback riding, having pets and working at the South Kingstown Animal Shelter.  Her dream was to be fluent in Spanish, which she achieved while in Spain during her junior year, and to become a veterinarian, which she was working on by taking required academic classes and by working at a veterinary office and at a local animal shelter. She also loved dancing, swimming, running, rock climbing and making things with clay.

During her senior year at Smith College, Margaret had a severe brain stem stroke a week before her graduation in 2006. (She graduated on the Dean's List with a major in Spanish.)  For the first 18 months after her stroke, she was diagnosed as being in a persistent vegetative state.  After participating in a Cornell and Columbia University research project, the doctors discovered a way for her to communicate using eye movement and her diagnosis changed to minimally conscious. She was able to communicate using eye movement and to comprehend written and spoken communication. 

At the end of 2012, several words that Maggie spoke were recorded during a research visit to Rockefeller University in New York City. As a consequence, her caregivers expanded their therapy to include hand over hand movements during personal care, art therapy, massage and recreation activities, in order to enhance her sensory stimulation. In addition, her story is chronicled in a book by Dr. Joseph Fins, called RIGHTS COME TO MIND. After nine years of this challenging life, Maggie died in 2015.



Who is Nancy Worthen?


Born in 1951, Margaret's mother Nancy has lived in Rhode Island all her life, except when she attended Douglass College in New Brunswick, NJ, where she studied sociology and religion. After college, Nancy returned home to Rhode Island, married and lived in Carolina, RI with her husband and her daughter Margaret.  

She worked in non-profit administration at the Westerly Center for the Arts, Providence Children's Museum, Ready to Learn Providence and Providence CityArts for Youth.  Her passion has been to inspire others to serve in these mission driven organizations while helping them to learn skills that foster reflection and self discovery.  In 2006, she moved to the Armory District of Providence, where she continues to garden and be involved in neighborhood activities.  She currently works with Fertile Underground Natural Foods Grocery, Share Space Arts Collective and the Look for the Good Project, supporting local creativity through these organizations.

Always drawn to the arts, Mags Arts embodies Nancy's life long dream to create art, while allowing her to assist her daughter Maggie in meaningful employment.  Making art with and for Maggie was the most inspiring project she has ever begun.  Learning to paint, learning the hand over hand technique of working with Maggie, creating cards using her artwork and then finding ways to share her art with the community was a perfect way to spend her days. Nancy will continue to use Maggie's artwork to do good in the community. Nancy also loves contra dancing, gardening, reading and having conversations with friends, and she is learning about buddhist meditation.

Why cranes in the logo? 

When Maggie first was hospitalized, her friends wanted a way to express their love and their healing wishes.  Using the idea of one thousand cranes as a springboard, cranes flew into Maggie's room from all over the world, sharing a healing wish.  See the Resources page for more information.

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Some Notes from May 2006 from www.caringbridge.org  
 
Loved ones-- Family, Friends, Colleagues: This is Rick Benjamin, a friend of Nancy's, and when I was with her yesterday she asked me to provide an update to all of you on her behalf. She asked me to glean some of this message from both Joyce Butler's and Dorcas Taylor's notes to others, and with those in front of me, here goes. First, Nancy wants everyone to know that she has a tactile, palpable sense of your love, prayers and support. These have been her companions on a daily basis and she feels that they have been holding Maggie in the most protective and gentle way. She also wants all of you to know that Maggie is receiving wonderful care. As she wrote to me last night, when the ICU doctor asked me to tell him about Maggie, I was happy to share some stories about her so that he could come to know her as we do, a beautiful, intelligent, smiling and energetic young woman always eager to learn. The fact that doctors, nurses and others on the staff care to know these things is so heartening to Nancy and the rest of her family. The social worker keeps in regular touch, even on the weekend; the housekeeper at the hotel sent Nancy flowers for Mother's Day; the nurses, after their 12-hour shifts, often stay an extra hour to check in. They have been kind, loving, knowledgeable, Nancy says. The dean at Smith College has set up a meeting with Nancy and all of Maggie's professors on Thursday, which Nancy will videotape. This meeting will be in lieu of a graduation ceremony and Nancy hopes to show it to Maggie later. Her name will also be called at this Sunday's graduation. All this to say that Nancy feels so loved and supported during this very difficult time. In the interests of also providing further details about Maggie's condition, here is the up-to-date picture: As she was writing her final paper as a graduating senior, Maggie suffered a stroke. She was alone in her dorm room at the time, and remained so for quite a while before she was discovered. More time elapsed while Maggie was evaluated at a local hospital-- diagnosis wasn't easy. After transfer to UMass Memorial hospital in Worcester, it was determined that Maggie had a blood clot on her brain stem. Her brain by this point had been deprived of oxygen for many hours. Her father Paul and her boyfriend Josh met her at UMass and stayed with her while she had surgery to break up the clot. Friends Astrid and Catherine came to support them in the decisions that had to be made for Maggie's treatment. Maggie has suffered significant damage to both her brain stem and mid-brain. Her condition is quite serious. Her doctors are not sure if she will regain consciousness. The hospital has offered up a solarium in the ICU for friends and family to gather. Smith College transported Paul and Josh to Worcester and has provided lodging at a nearby hotel for Nancy and Paul. Nancy's cousin, David McClary and his wife Alice have traveled to be with her from Nashville. The College is also providing transportation to and from the hospital for Maggie's friends at Smith. There are cards all over the window in Maggie's room. Framed pictures sit on a table. It is as peaceful a place as a room in ICU can be. Nancy wants all of you to know how grateful she is for your love, warm wishes, offerings. In such a difficult time, these are a blessing. Nancy-- and this is my own observation-- is trying very hard to remain calm and clear and hopes in every moment to have greater clarity and vision for Maggie's sake. She is, as all of us have always known, remarkably loving and open and direct. As Joyce noted, even during this time, she continues to think of others. With abundant love and gratitude, Nancy (through Rick)

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Speech Therapy 

After Maggie was diagnosed as minimally conscious, she began speech therapy at the Neuro Rehabilitation Center at Middleboro. After mastering using her eye movement to answer questions, Maggie began to work with a MY TOBII computer with her speech therapist as well as a retired occupational therapist Kate Gillis.


About this video

"Maggie is demonstrating her computer. She uses MyTobii Eye Control technology that allows her to control the computer by looking at desired images on the computer screen while a partner holds her left eyelid up allowing her to see. Using Communicator 4 software, a communication partner designs a set of linked pages. Maggie uses the pages by looking at an image on the first page. Depending on how that image button has been programmed, various things might happen. In this movie, when Maggie looks at an image, the computer speaks and says something related to the image, then the image on the next page appears. When the sequence is finished, the program returns to the home menu and Maggie can select another page set. The page set she is sharing in the video tells about her daily activities.

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Speak Your Mind 



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Painting by Lisa Melmed
 


Nancy Worthen was the AmeriCorps Director at Providence CityArts for Youth when she met Lisa Melmed, a RISD graduate who worked at Nathan Bishop Middle School as an AmeriCorps Arts Educator through CityArts.  During their annual fundraiser, Nancy bid for a portrait from Lisa Melmed.  Lisa painted the portrait based on photographs and sketches of Nancy and Margaret on a boat ride enjoying the summer sun.

Contact: Nancy Smith Worthen
401 487-9713
info@magsarts.com
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