So Many Questions: Getting out the word about MS is a personal cause for actress Madeleine Stowe
Eighty-nine episodes left audiences salivating for more when Madeleine Stowe’s run as conspirator royale and wicked Hamptons empress Victoria Grayson on the ABC drama, “Revenge” came to a deliciously tragic end. Her addictive, evil persona mesmerized viewers for four seasons, as Emily Thorne (Emily VanCamp) set out to avenge the wrongful imprisonment and murder of her father. As the show’s title indicated, payback turned out to be a real, well, you know what.
When the series ended in May, the Golden Globe-nominated Stowe took a 180-degree turn from the glitz and glam of La La Land to join Genzyme’s “Lights, Camera, Take Action on MS” program to raise awareness for the chronic disease that affects 2.3 million people worldwide.
For Stowe, the association is personal: Her father passed away in 1983 from complications related to the disease. “It took away kind of a jaded part of my psyche. I always thought this was something that could never really be dealt with,” she says.
The national tour, coming to Pittsburgh’s Sheraton Station Square on June 13, is being touted as a Hollywood-style event, free to families and patients living with the debilitating symptoms of multiple sclerosis.
To register, visit www.takeactionms.com
Question: What was it like watching your dad struggle with MS?
Answer: It was like watching a slow leak that you couldn’t stop. Because he had such a rapid progression of the disease, we were caring for him the way you’d care for your infant brother. It was really hard because he’s your dad and you really love him and you want to see a cure come. At the time, they kept saying a cure was around the corner. There was just nothing that could be done at the time.
By the time he passed away when I was 23 years old, I had moved into my adult life and began living and concentrating on what I chose as a profession, and I thought that MS was nothing that could really be dealt with — only vaguely managed. (Now) I’ve seen these tremendous advances that have been made, and people are really having a high quality of life and pursuing what they want to do in a way my father never could and that was kind of hard.
Q: What’s one of the biggest misconceptions about the disease?
A: It’s a very misunderstood condition. I think that on the one hand, people think it’s no big thing. You hear someone has cancer, and we all sort of gasp. I don’t feel there’s been enough focus on MS, because what’s really important about this condition is that you act on it very quickly. There are several treatments that can seemingly stop the progression of the disease, so it’s really important that you’re actively engaged in taking hold of your life and living life on your terms.
It’s a very mysterious condition to most people. Mostly because of its unpredictability. You don’t know how you’re going to feel in terms of your energy level from one day to the next.
Q: What can people expect when they attend “Lights, Camera, Take Action on MS”?
A: Well, there have been neurologists, there have been MS patients on the panel, myself — and if someone wants to ask a question, they can have it be sort of randomly read from a list of questions about what our personal experiences are. It creates an interchange between the people who have MS, their families who are there with them, their caregivers who are there with them.
So, we talk about the things that are physically challenging for them, the emotional challenges and the larger picture as caregivers, and it seems to lift a burden off of everyone. And there’s a lightness that happens.
Q: That has to be so comforting to people, to know they’re surrounded by others who understand.
A: I think that’s really the point. It is a disease that you can be very — depending on the severity of what you have — proactive about. I’ve met people firsthand who’ve run a marathon. It’s hard enough for me to do a mile hike, I’m so lazy! But really exceptionally talented people, and I think it’s just really intriguing to see and to watch. And it gave me a sense of hope in an area where I had no reason to have hope for.