Professor Manuel Pastor has spasmodic dysphonia
Manuel Pastor, Ph.D. is Professor of American Studies & Ethnicity at the University of Southern California where he also serves as Director of USC’s Program for Environmental and Regional Equity (PERE) and co-Director of USC’s Center for the Study of Immigrant Integration (CSII). Founding director of the Center for Justice, Tolerance, and Community at the University of California, Santa Cruz, he holds an economics Ph.D. from the University of Massachusetts, Amherst, and has received fellowships from the Danforth, Guggenheim, and Kellogg foundations. He also lives with spasmodic dysphonia.
Professor Manuel Pastor is most comfortable speaking in front of large groups and he usually begins with the statement, “My voice may fade or break because I have a voice disorder called spasmodic dysphonia. I get treated once a month with botulinum toxin, because that how we treat everything in Los Angeles.” He says he usually gets a good laugh, but more importantly it helps to disarm the audience and take away the mystery surrounding the breaks in voice.
A quick diagnosis was critical to his self-esteem
Dr. Pastor’s symptoms started about three years ago when he noticed some scratchiness in his voice, followed shortly by cold-like symptoms. It persisted, and, at that point, he knew it was more than a cold. It was an issue with his voice. What followed was a frustrating passage of at least five months working with his general practitioner and receiving multiple diagnoses, including a sinus infection, acid reflex and allergies. Not helping the situation was the suggestion that the symptoms were stress-related as he was dealing with his father dying. Finally, referred to an allergy specialist, whom he felt a bond with because of similar backgrounds, Professor Pastor received not a diagnosis, but rather words of comfort when she said to him “I am going to make sure you are going to get well.”
He shares, “We tried an allergy regiment without any improvement, and she immediately referred me to a voice specialist, Dr. John Lim at Kaiser Permanente. Within minutes, I had a diagnosis of spasmodic dysphonia.” Professor Pastor learned symptoms were typical for spasmodic dysphonia — voice was better in the morning, able to sing but couldn’t speak, voice improved when lying on back, and, of course, the voice breaks. It was a very scary diagnosis for someone who is a public speaker and who has a good voice, even referred to as a “radio voice.” Dr. Pastor quickly began treatment with botulinum toxin injections. Over the years, he has worked closely with his physician and feels that he is being treated to achieve his top level of performance and not just merely to get along. He receives injections once a month on a very low dose. Dr. Pastor shares that he tries to be the best patient during the procedure in order to get the best response from his physician. While he doesn’t like shots, he tries to remain very calm. He also works with a speech person to help with further improvement.
“I really wonder what would have happened to my self-confidence if I would not have been able to move through this process within five months. Every human interaction was scary. I didn’t know how my voice would behave. Now I know what is going on and can help make people feel more comfortable with my voice,” he shares.
His life with SD
Dr. Pastor is a Professor of Sociology at the University of Southern California and heads two research centers. They address issues of social justice, such as environmental disparities, work force development and immigration integration. This is done in conjunction with community-based organizations and they help to provide the research scaffold to affect policy change. He has also conducted research on Latin American economic conditions and documents the gap between progress in racial attitudes and racial realities, and offers a new set of strategies for both talking about race and achieving racial equity. His father’s experience as an immigrant along with his experience after graduate school with raising the minimum wage in California played instrumental roles in shaping his professional interests. Dr. Pastor speaks frequently on issues of demographic change, economic inequality, and community empowerment.
It was a personally mobilizing journey for Professor Pastor in losing his voice and then finding it again with treatment. He says. “It was impactful when people said to me ‘I am so glad we didn’t lose your voice.’ I feel my voice provides a platform to speak out for those who may not be able to because they do not have access to insurance or are shut out of educational systems. It was important for me, and not for reasons of ego, that my voice not get lost.”
Professor Pastor has learned to live with spasmodic dysphonia and work around it. Coming to peace with it, rather than complaining, has been an enormous gift and even allows him to understand other people with difficult disorders. He explains, “I used to have a great, big booming projecting voice and now, I just explain that my voice doesn’t project very well. It is easier to remove the mystery behind spasmodic dysphonia and tell people up front.” In response to what advice he would give others living with spasmodic dysphonia, he says, “Have confidence about your voice and the impact you can have on the world; be aggressive and assertive to make sure your agenda is being heard; and don’t deny spasmodic dysphonia is part of your life but don’t let it define your life.”