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The Life And Legacy Of Sonal Shah

Editor's Note: While the Paralysis Resource Center provides resources regarding spinal cord injury, the center also has an abundance of resources to serve other conditions such as Amyotrophic Lateral Sclerosis (ALS).  Sonal Shah, author of My Life, Legacy, and ALS has been an inspiration to those living with the disease as she continues to live her life to the fullest to help the 30,000 individuals who live with ALS,  and inspire the close to six million individuals living with paralysis, through the advice and resources given in her book.

“My family and friends might say ‘why her’, but I never felt angry or bitter,” explains Shah, who was diagnosed with ALS, also known as Lou Gehrig’s disease, in 2012. “Yes, I cry still. I had gone through my challenging times, but that’s what [life] is and [I] do the best I can. As I said: I will continue working until the last drop of my energy.”

Shah was born into a middle class family in Ahmedabad, India, where she lived with her parents and two siblings. Before immigrating to America in her twenties, Shah completed a bachelor’s degree in economics and LLB in law. After moving to the United States, she had a career with Bell Labs and AT&T for twenty years. During her time there, she also worked with the U.S. State Department to reevaluate the process of adopting children from India and ran for a position on her township’s committee, while being a full time mother and wife; all of which she speaks about in her autobiography. Even today with her advanced stages of ALS, her spirit, like Christopher Reeve’s, remains strong as she prepares for her trip to Washington, D.C. in May where she will advocate for ALS.

“I want to work on the ALS expenses for care and caregiver issues. Advocacy is a very powerful tool for research,” she explains.  “ALS [advocates] do an excellent job to get funding from the government though it is so little for [all your expenses].”

From the time she was little, Shah was determined to help others in her community any way she could, including running for student government, assisting her uncle’s run for State Council, and now being an advocate for ALS research and resources. This, however, seems only natural as advocacy is in her family’s legacy, as members of her family like her grandfather worked closely with Mahatma Gandhi.

“I want the community to join me in spreading awareness in New Jersey, in our nation and around the world to find the cure,” Shah says. “And effective treatment is very critical. You [can] read in my book about the awareness day initiated [in New Jersey]. I wanted to make sure it takes place in this year, 2015.”

No victory is without its battles, though. With the challenges Shah faces as her illness progresses, her support network of family and friends are there, accepting every challenge with her. They continue to lend a hand, and most importantly, by just be there for her.

“When she first called me when she was diagnosed, she broke down. I didn’t have any idea what ALS was….we were all shaken up for weeks, and thought, why her?” Shah’s friend, Jay, says. “She keeps on telling me I’m her angel, but believe me, she’s my hero. What she’s doing, if I had ALS, I don’t think I could have done. And God chooses the right people.”

Shah admits there are times where she feels saddened by her diagnosis, and the sacrifices her husband, Nirmal, daughter, Nirali, and friends have made to ensure her quality of life remains as stable as possible. Her friends take turns driving her on errands and keep her company to give Nirmal a break as her primary caregiver. Meanwhile, Nirali calls two to three times a day to chat, and makes frequent trips home from D.C. to bond with Shah in the time she has left.  These instances continue to drive Shah’s motivation to hope that there may be a day when a cure will be found for ALS. 

“I’m in hospice care now. And you know what it means? And I have more work to do, and not much time left. But I will continue working. I’m going to Washington D.C. to advocate for ALS, and I will raise this issue,” Shah concluded, “This is the most selfless action of work, the opportunity God gave me before I depart. I will not be around to be a beneficiary of it but this is not for me, this is for others or rather future ALS patients and families.”

For more information on ALS, Paralysis, and resources in your area, visit our Paralysis Resource Center. Be sure to borrow Shah’s book My Life, Legacy, and ALS from our Lending Library, which offers access to 5,200 paralysis–related titles including books, videos, and periodicals that can be shipped to you at no cost. 

In addition, the Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.
Posted by Community Admin on Apr 29, 2015 11:39 AM America/New_York