Rachel Chagall
on
Leeza (2000)
Rachel discusses how she was afflicted with Guillain-Barre (ghee-yan bah-ray) Syndrome. It is a disorder in which the body's immune system attacks part of the peripheral nervous system. The first symptoms of this disorder include varying degrees of weakness or tingling sensations in the legs. In many instances, the weakness and abnormal sensations spread to the arms and upper body. These symptoms can increase in intensity until the muscles cannot be used at all and the patient is almost totally paralyzed.
Transcript
Leeza: You may actually recognize Rachel Chagall. She was Fran Drescher’s best friend in The Nanny. This was a role she played for 6 years. Did we love this show?
(applause)
Great show! I’m so glad to meet you!
Rachel: Thank you.
Leeza: Welcome. Nice to have you here! Who knew this was on your resume?
Oh, by the way…GBS.
Rachel: Right, right.
Leeza: When did it start for you?
Rachel: Well, I have a little bit different story than the other people, because you know there are all different kinds of Guillain-Barré. And I had the classic kind like they had. I call it the classic kind the second time, but the first time, mine was slow and insidious. And I couldn’t run for the bus, my feet felt cold, all of a sudden I had to get up this way, (uses arm rests), but this was all for a period of months.
Leeza: And this was in your 20’s?
Rachel: Yes, I was 24. and um, finally I was doing a play and I couldn’t get up. I was kneeling and I couldn’t get up without using my arms. I went to a doctor, they didn’t know as much as they know now. And they thought that I was maybe severely hypoglycemic or one doctor thought it was psychogenetic because I was an actress so maybe I was, you know, a little nutty. (audience laughter) So…but finally, on my birthday which was 6 months later, my husband and I saw a Broadway show…and uh, applause because the show was over and I said, I can’t get up. And my husband sorta picked me up and my legs were like jelly. And I was like walking on my ankles, I looked down. And he just carried me home and I went straight into the hospital. But even then though, the tests came back negative. They didn’t know what it was. They said, well, you know, you’ll get better. And then, I kept on getting worse and worse. But it was just a debilitating thing. I was basically ended up as a shut-in. But I wasn’t paralyzed. I just had trouble moving. To pee was like a whole day’s event.
Leeza: A whole production.
Rachel: But then, it slowly started to reverse, they didn’t know why. I was on steroids, it didn’t really help, it started to reverse. It took 4 years. And I said, okay I’ll be an actress again! I’ll be a handicapped actress! I had my crutches and I got the part of an extra in a hospital scene and I was very happy. I mean, as an actress I was very happy to get that anyway. So, I said, okay. Four days before we were to start shooting, I went to sleep feeling a little numb and then next morning I was on the toilet, not to be… and I couldn’t get up. And I sorta got up and I screamed, ‘Greg!’ He was my boyfriend at the time and uh, we called a docter so he says ‘Get her to the emergency room immediately.’ And I just remember the nurses at the ER saying, ‘Just pick her up by the loops of her pants,’ because I couldn’t move. Then within 4 days…it was the classic Guillian Barre and then I spent 3 months in the hospital and when I was allowed to go home, my mother and my boyfriend took care of me and 5 years later I could walk without canes or crutches or wheelchairs…
Leeza: That’s what I want to talk about when we come back. So here’s someone who is beautiful and young and vivacious…
Rachel: Well…
Leeza: … and has got this great career going. So she knows what it’s like to have all that as your outer package. She also knows what it’s like to have a crutch and a cane and the wobbly walk and the people thinking, ‘What’s up with her?’ as her presentation to the world. We’ll talk about that when we come back…
(commercial break)
Leeza: (in audience) I must tell you, all of us out here are really stunned. We’ve never heard of GBS. You can’t get a shot to keep you from getting it. You can’t take a pill to make it stop, but luckily all these people have recovered and the doctor has told us that typically there is a full recovery from it and it doesn’t last forever. Your question?
Audience Member: My question is, do we know how long it’s been around and if it’s in a specific part of the world? Or in all the countries, it’s known?
Leeza: Oh you guys are getting technical now. Who wants to answer this?
Dr. Thomas Hedge (Paralyzed from Guillain-Barré Syndrome): It’s all over the world and there’s no one predisposition. Or there’s no uh, one location or geography that makes you more susceptible.
Leeza: See there are no easy answers with a big bow on it for you guys. Right. Rachel, let’s pick up, first of all, one of the things wonderful about all these stories… you’re in a relationship, all of these people had the person you loved, had people supporting you. All the relationships stayed together, right?
Rachel: That’s what I was thinking.
Leeza: Which is amazing! It’s because everyone invited today is blonde! (laughter) No, but I think that’s really important because something this challenging, you know is tremendously stressful and here you’ve got this handsome guy that you share your life with who now has a part-time invalid and like having someone disabled that he’s not prepared to cope with.
Rachel: Right.
Leeza: How did you cope?
Rachel: You know, I… I realized when I was in crisis situations that I could not let one negative thought enter my mind because I was in a survival mode. You can’t go there. Or you can’t survive. And it was those moments that you realize how primal it is that you love life. And also, out of the sense of responsibility to my boyfriend and to my parents who love me more than life. I felt a sense of responsibility to try for them because when you see the pain in your parents’ eyes because they’re helpless, I felt it was my duty to give them as much love in that form, to be a fighter. I couldn’t do that to my father, you know. And um… I think the harder part was, okay the drama is over, now you’re lying there, but you’re sort of okay so you can leave. That’s when it gets scary because what are you going to do with your life? What are you going to do? I just said, ‘I don’t know what I’m going to do,' but I had a basic belief that I held onto, that my life was important. An intrinsic belief that I would do something meaningful. I didn’t know what, if I couldn’t act, I’d do something else. And uh, that’s what sort of kept me going, and uh…
Leeza: But you started working with a physical therapist?
Rachel: Yes.
Leeza: Who got you to the point where you could navigate through life…
Rachel: Yes.
Leeza: And got you a nomination. (Golden Globe)
Rachel: Yes, what happened was that when I started to feel strong enough, when I had my braces and crutches, I said, ‘I want to act again.’ So I knew there was this play about an actress… about a musician in a wheelchair. So I said to my husband, ‘I can do that, she’s in a wheelchair.’ So, my theater company put it on and I was seen in that by a producer who was doing a movie called, Gaby: A True Story. And it’s about a woman named Gabrielle Brimer, who couldn’t move or speak except her left foot, but she had cerebral palsy. But I was given the role. I auditioned and got it. I thought, how lucky I was that unlike other people who have these horrible experiences, they don’t have an opportunity to filter all those experiences through themselves through a character. And everything I felt, I could express through Gaby. So it was sort of my cleansing, my healing, my gift. You know, I’ve seen the black of life… you know… saw the white of life and...
(trails off)
Leeza: I’m so inspired by these stories. I really am. You all are experts on it because you’ve lived it. We also have people in the audience who have worked with GBS…Society… Association… what is it?
Estelle Benson (Founder, “Guillain-Barré Syndrome Foundation”): Syndrome Foundation International.
Leeza: Okay, can you field questions when we come back from the audience?
Estelle: Sure.
Leeza: Okay, we’ll take a quick time out and we’ll see you all back here.
(commercial break)
Leeza: Rachel got it twice. Are recurrences-
Estelle: It’s not unusual.
Leeza: Not unusual?
Estelle: It’s rare, but not unusual.
Leeza: Oh. Your question?
Audience Member: You sort of answered my question. What was the percentage that you would get it a second time, if you got it one time, like Rachel, are you going to get it again?
Estelle: My husband had it 20 years ago and I don’t worry about that. Because if we all worried about that, it would be a sorry state. If we… it happens.
Leeza: You said that if he got over it that you would dedicate yourself…
Estelle: My husband had Guillain-Barré 20 years ago and I was appalled that nothing had been done. There was nothing to read, there was no one to speak to. There was no one to explain this to me. And I vowed if he ever lived because he didn’t think he would, that we would do something about it. We started with 8 people in our home and now we’re an International organization. We have a 160 thousand… (applause)
Audience Member: I just wondered if this could be any way inherited?
Estelle: No.
Leeza: No? It’s so random. But now it takes your nervous system, the myelin
around the nerves?
Estelle: It destroys the myelin sheathing around the nerves. but there are other variances of Guillain-Barré. Dr. Hedge can go into it, I’m sure.
Leeza: Actually, I’m going to refer everybody to our website and to your foundation. We have numbers. We have resources for you. Now you know about it. Now you can make sure you have a neurologist in your computer so you know who to call when you have something like this, when you think you’ve got something like this. And the thing I think we learned from all these stories is, you know, hopefully you have medical people in your life that know they need to listen to patients…right? If they understand that patients know what’s going on with them and they won’t discount you or dismiss you with, ‘Oh, you’re crazy go home.’ Um…I’m sure that there are hysterical people who come in with things that don’t turn into something major, but… I just think that it’s so inspiring to see how successful you all have been. And how lovely of you and how generous of you to share your stories. Thank you all, very, very much.
For more information on GBS, go to Guillain-Barré Syndrome Foundation
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