Recipient of MDA’s top award shares strategies for personal success
|Tom and Tina Bush have learned how to manage disability together. “If I dress well, look well, it’s a result of Tina’s help,” Tom says. “She has been my support, and she’s also my quality of life.”|
Tom Bush spent 40 productive years in the working world, and has retired — twice in fact — from rich and rewarding careers.
Nowadays, the 66-year-old Oro Valley, Ariz., resident, who has type 3 spinal muscular atrophy, keeps a somewhat slower pace, traveling and trying out new restaurants with his wife of 39 years, Tina. Although their three children long since have grown and moved out, three cats and two roadrunner families, to whom the Bushes feed raw meatballs (the roadrunners, not the cats), keep them company.
But Bush did find a little extra excitement in his life recently on a trip to glitzy Las Vegas. There he attended the Jerry Lewis MDA Labor Day Telethon and was presented with the 2009 Robert Ross MDA Personal Achievement Award. Each year, the award (named after MDA’s late president and CEO) recognizes the accomplishments and community service of a person registered with the Association.
Bush’s road to recognition has been a long one, marked by many successes. It began, he says, with a young boy who had supportive parents and an unstoppable drive to make something of himself.
A good student, Bush earned a Bachelor of Science degree in industrial engineering from Rutgers University in New Brunswick, N.J., in 1964. After an extensive job search — made longer by discrimination due to his disability — Bush began what would turn into a long career with the New Jersey state government, starting in an entry level industrial engineering job with the Department of Transportation.
Working in civil service, Bush achieved not only professional success, but the passion to help others that defines him still today.
One of his many achievements in New Jersey was coordinating the implementation of the newly signed Americans with Disabilities Act (ADA). He helped state agencies develop and share innovative ways to eliminate barriers and improve accessibility to state programs for people with disabilities.
It was this work, and his service on the New Jersey Governor’s ADA Task Force, that lead Bush to realize he was in a position to help others and make a difference.
“I could really assist with doing something — with opening doors,” Bush explains. “It was my opportunity to give back, to pave the way and open doors for the people who will come after me.”
Retiring from a 30-year-career in 1993, Bush moved to Tucson, Ariz., where he served on the local MDA Task Force on Public Awareness, before coming to work at MDA national headquarters. There he developed, operated and managed the Association’s first Web site. Under his direction, the onepage site grew into three sites (main, ALS Division and Spanish language), that disseminate information about clinical trials and MDA benefits services.
Outside of work, Bush continued to do all he could to “give back,” including:
Since his second retirement — he left MDA in 2004 — Bush has taken an active role in his church, Saint Andrew’s Presbyterian. He also enjoys reading mysteries, historical fiction and reform theology, and belongs to a local men’s history group that meets to discuss selected American history topics.
Bush credits his personal and professional success to “determination and a very strong will to survive,” an ability to adapt and a “significant amount of support” from wife Tina.
He firmly believes there exist today a great many opportunities to make positive and productive contributions in life that didn’t exist 50 years ago for people living with neuromuscular diseases, and says people must take risks and “extend themselves to the fullest” in order to make the most of them.
“Don’t let anybody tell you that you can’t do something, or that it’s impossible for you to accomplish this or that,” he says. “Be willing to fail as much as to succeed, and step by step you’ll become more confident in your abilities.”
Bush points to the MDA Art Collection artists whose works hang on the walls at MDA headquarters, and to those who also have been honored with achievement awards as examples of people who refuse to be bound by “limitations that have no substance.”
“Think about those who have come before you and those who will come after you,” he advises. “Find every opportunity, every benefit, everything you can do, and do it.
“You have two choices: You can put your head in the sand and give up, or you can lift your head, put your face to the wind and go forward as best you can, using whatever capabilities you have, whatever strengths you can draw on — from others, yourself, from your faith or whatever. Just go forward.”
Coping with a disability alone, Bush says, isn’t impossible, but certainly may be difficult.
|Bush, right, (pictured here with MDA Board Member Chris Rosa and Telethon co-host Jann Carl in 2000) attended his first national broadcast of the Jerry Lewis Labor Day Telethon in 1994 and has attended every one since.|
"People sometimes don’t realize what it takes to get up in the morning, go to the bathroom or get dressed,” he explains, adding, “Tina and I have learned together. If I dress well, look well, it’s a result of Tina’s help — she has been my support, and she’s also my quality of life.”
Bush advises people “find a soulmate,” whether it be a friend, family member or spouse, to support them and offer encouragement, and to not be afraid to tell people what they need.
He recognizes that “some of the most helpful people in the world have the greatest difficulty in letting others help them,” and to that he suggests, “Give and take. Learn how to give and receive humbly.”
For those who have a hard time asking for help, he has one word of advice: Learn.
“Recognize that your pride isn’t going to get you anywhere,” he explains. “You can sit there and be prideful in front of a door — it’s never going to open. The only way it’s going to open is if you ask somebody to open it.”
Bush admits that it’s human nature to want to embrace “rugged individualism” and do things for ourselves. To that he says, “Maturity in life involves learning to depend on others, whether you have a disability or not.”
Bush says that in 1994, when he attended his first national broadcast of the Jerry Lewis Labor Day Telethon, one of his greatest impressions was of the many ways that people can step outside themselves and do for others.
“[At MDA] I’d seen all the people at various levels of the organization doing their jobs at headquarters in Tucson in the traditional hierarchical order,” he says. “But at Telethon they did all kinds of jobs. They all did what needed to be done, not necessarily related to their station in the organization. They just did it.”
The Telethon works, he says “because people understand their jobs, and they just do what needs to be done.”
That attitude toward getting things done, Bush says, extends to life.
“There are opportunities in life,” he says, “opportunities to do. No matter what you give, you’re going to get back more, so show up, give of yourself and don’t ever underestimate that little bit you give and what it may mean to someone else.”
As the 2009 Robert Ross MDA National Personal Achievement Award recipient, Bush offers a message of hope to people with neuromuscular diseases and their parents.
“I think one of the more devastating experiences as a parent is to learn your child has a neuromuscular disease and to simply not understand what the prognosis might be, what the child can be, and how things will turn out. For those parents, and for those children, what I represent is hope. There is life after neuromuscular disease, and you can plan for it. With all the medical improvements and all the assistance that comes from MDA, people with neuromuscular diseases are living longer and also having the ability to do more and to make positive contributions to society.
“There are people with disabilities who are never going to be recognized, but who nonetheless are contributing to society, improving themselves and feeling good about themselves, and that’s the measure of hope I’d like to give to parents and children with neuromuscular diseases.”