Circa 2005
The great 19th century American physician, poet and philosopher Oliver Wendell Holmes once said, “A medicine … is always directly hurtful; it may sometimes be indirectly beneficial.” (Note that Holmes very aptly included in the definition of medicine herbs and other natural remedies. He was famous for pointing out that poisonous mushrooms proved natural did not mean safe.) Today patients with many serious illnesses, such as multiple sclerosis (MS), have to choose whether the side effects of medication are worth the potential benefits. Many emotional factors can play into these decisions. The very act of taking medication may symbolize sickness to people, who feel that as long as they are managing without medicine they are not really sick.
In multiple sclerosis, the four medications available to modify the early course of illness have been shown in double-blind, placebo-controlled trials to reduce relapses by about a third, reduce inflammatory lesions seen on MRI by 50 to 90 percent, delay progression of the illness to more severe symptoms and improve some measures of quality of life and cognitive function. The medicines work far better early on, before nerve damage has accumulated, so the decision to delay treatment may have some costs. However, they must all be given by injection, ranging from once a day to once a week, and like all medicines they are associated with some side effects. Many alternative therapies have been tried for MS symptoms, such as massage, nutritional therapy, Feldenkrais bodywork, reflexology, magnetic field therapy and neural therapy. Although rigorous evaluations are few, there is some evidence of effect for some alternative therapies in symptom relief, although so far none have been shown to affect disease progression. Some alternative therapies—those that stimulate the immune system—may actually be harmful with MS, because an over-active immune system is part of the illness.
So how does one person take all this information and design a regimen appropriate for himself or herself? Scientific studies give data about populations, but each person is an individual. There are no crystal balls—no one can guarantee results, and no one can predict which side effects or which symptoms will occur or how severe they will be. No one can live his or her life two ways to see which turns out better.
Law and Order:SVU’s director of photography Geoffrey Erb has lived with MS for more than three decades. In the following interview he discusses his personal approach to MS and his exciting but grueling work behind the scenes of a hit show.
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Chet Cooper: Your title is director of photography. What does that position encompass?
Geoffrey Erb: I’m responsible for the cinematography, for the lighting and the composure of the shots. I’m basically the man underneath the director. A director will lay out a shot, and it’s my job to execute the shot. I put it into terms the crew understand, such as where the lights should be, where the dolly and the equipment go, where the camera is going to go and what it’s going to do. Every eight days we get a new director. I’m here 24/7. It’s my job to preserve the look and to make sure there is continuity from show to show. Right now all the other Law & Orders are trying to emulate us and make their shows look like ours.
CC: When were you diagnosed with MS?
GE: I’ve had MS for 30 years. I had the first attacks in 1974, but it was diagnosed in 1976.
CC: How has it affected you?
GE: I’ve had problems on and off since then. The first 20 years it didn’t particularly bother me, but the last five years it’s started to take its toll. What happens with MS is not that the muscles are weak; just the opposite, they go into spasms. Walking becomes difficult because you can’t bend your leg. Other problems are associated with MS—eyesight, the bladder, exhaustion—but for the most part I’ve been fairly healthy for the past 30 years.
CC: What method of treatment have you followed?
GE: I’ve never really taken any drugs for it.
CC: Really?
GE: No. My whole approach has been holistic on almost every level. I do a lot of acupuncture, chiropractic and massage, and I have a homeopathic doctor I do a lot of work with. I also have a regular MD who has Lyme disease, which is very similar. He’s very familiar with these types of diseases.
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CC: How often to you go to the doctor?
GE: I rarely go. This job is pretty all-consuming. We have two months off in the summer, so every summer I make one doctor’s appointment with my regular MD and one with my neurologist, whom I go to because he’s a friend, although I’ve never taken any medicine. I see the doctors once a year and that’s about it; that’s my limit other than the homeopathic doctor whom I work with pretty closely on a year-round basis.
CC: Are you concerned with taking medications?
GE: I think the medications don’t work and they have side effects. There are a million side effects that can affect your work.
Here’s my day: I start at 7:00 am on Monday morning and I work an average of 14 hours a day. Last year I averaged 73 hours per week. Those are on-the-clock hours and don’t include about an hour’s worth of dailies I watch and scripts I read when I go home. Plus, I commute. So for most of my life I’ve gotten five and a half hours of sleep. I work a really horrendous schedule.
CC: When did you begin using the power wheelchair?
GE: About two years ago. The studio, as you saw, is a couple hundred yards from set to set. I have to run back and forth between the set we’re crew lighting and the set we’re shooting. I used to use my cane to hobble over there and it was really exhausting. For a long time they wanted me to use the chair and I just kept ignoring it. I said, “It’s like glasses—once you start wearing them you never stop.”
CC: How did they convince you to give it a try?
GE: One of the prop people had a friend who runs a company, so they brought in one of these chairs and talked me into it. They kept pushing me until I tried it out, and it’s an incredible blessing. When I finished at night after 15 or 16 hours, I used to be just exhausted. I find now with this chair that physically I feel great; I’m not tired anymore. It’s made an enormous difference in my life. I resisted it for a long time, but now on Monday morning I’m really grateful to get back here to the studio and just sit in the chair and ride around.
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CC: You leave the chair in the studio?
GE: Yes.
CC: In hindsight, if you had known how much easier using the chair would make things, do you think you would have started using it earlier than you did?
GE: I’ve always felt everything has its own time. I just think these things evolve. I’m grateful for the chair; maybe I should have done it a year sooner, but I don’t know that answer.
CC: Do you think it’s harder to find employment in your position having a disability?
GE: This is a very, very fair business. I did the original pilot for Law and Order back in 1988 with Dick Wolf and I’ve been involved with him for years. I did another pilot for him for a show that didn’t go, and ultimately I took over this show. Dick Wolf knew I had a problem— I was limping and I wasn’t walking as fast as other people. I’m not sure whether it was a factor or not, but no one ever brought it up. They gave me the job because I could do the job.
If you can do the job, they will provide what you need. The production company provides me an assistant in the morning who will meet me, park my car if I need it, get me breakfast. They do that for most of the executives anyway, but they’re very good to me. It never becomes a factor. Every once in a while the production manager will say, “Is there anything we can do to help you?” Generally I’ll say, “No. People are falling all over themselves to help me,” which is really the case.
CC: How do they respond to absences for various medical issues you might be dealing with?
GE: You have to be able to do the job. I’ve missed two days of work in 30 years because I had a blood infection; I was in the hospital in California. No one can replace me in my job and I show up every day no matter how I feel.
CC: The studio appears to be rather accessible. How are accessibility issues addressed when you’re shooting a scene on location in New York or New Jersey?
GE: Every once in a while there is a problem getting to a set. About a month ago we were shooting on a rooftop at night and the elevator broke. I wound up going to the next building and directing everything from that rooftop. Everyone, the crew in particular, is aware of my problem. Wherever we’re shooting, whether it’s in an apartment building or a brownstone, the guy who scouted it will tell me exactly where the access is, where the service elevators are and what’s the fastest way in. Everyone is very aware of what I’m capable of and what I’m not capable of. So if there’s a problem, they always give me a heads up.
CC: With your busy schedule, what are your diet and lifestyle like?
GE: I’m basically a vegetarian and I have a very good diet. I find I have more energy now than I did 10 years ago. I’ve had to really clean up my food and clean up my act, and I have a great capacity for work.
CC: At what point did you become a vegetarian?
GE: The summer of 1980 I gave up everything. At one point I was literally just eating sprouts. Little by little I introduced things back into my diet because it really didn’t make that big a difference, but I stayed vegetarian.
CC: I thought I saw you drinking some bourbon and smoking cigarettes in between takes. That wasn’t you?
GE: (laughs) Fortunately not. Cigarettes I gave up a long time ago, back in 1980. Occasionally I’ll have a glass of wine.
CC: Are there any other foods you avoid?
GE: I don’t eat wheat. I haven’t had wheat in four or five years. It’s made a big difference in my energy level.
CC: Really?
GE: I’ve seen some evidence that gluten is bad for MS. I used to choose restaurants by the bread they served, so it’s a real sacrifice, but I feel better without it so I don’t eat it. I can have corn products, and sometimes in the morning I’ll have a burrito with a corn tortilla. If I’m outside I’ll need some carbs just to stay warm.
CC: Do you know any other people who have tried your same approach to treating their MS?
GE: People often call me and I’ll explain what I’ve been doing. Almost inevitably—I would say 99 percent of the time—they go right back to what they were doing, which is the doctor’s regimen. I think people are afraid to take responsibility for their own health. They’re really hoping a medication or a pill is going to cure them. I’ve never felt that. I’ve always felt I have the ability to heal; I just have to find out how to do that. In the meantime, I’m just going to keep myself as healthy as possible. I do a lot of different things in the alternative health area, and I have a six-month rule. I’ll do something for six months. If it makes a difference, I’ll stay with it. If it doesn’t make a difference, I’ll stop.
I’m in a very slow progression with my MS. Every year I get about five percent worse—I have five percent less mobility or I’m five percent more tired. I can feel it, but it’s very slow. In truth I think this disease has stopped. I had an MRI about 10 years ago and it showed dozens of lesions on my brain, and I had another MRI about three years ago and it showed only one left. I have no idea what did it, but something cleared up the lesions. I still have the spasms, though, that’s the problem. But like I said, I feel really good. I have a lot of energy these days, more energy than most healthy people here.
CC: Do you exercise?
GE: The best I can. I get up in the morning and do about 50 minutes of stretches. At night I try to do about 10 minutes of stretches. The stretches are more important than exercising. With our schedule I don’t have a lot of time.
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CC: You mentioned you experience many of the typical symptoms of MS, such as vision impairments. Has it affected your sense of color?
GE: No, although my wife says it has! (laughter) She doesn’t allow me to pick colors for the bedroom. It’s funny—everyone else is coming to me all day long with color swatches I must approve. I’ll approve the color we’re going to paint the squad room or things like that. But my wife says I’m blind. (laughs)
CC: That’s why the other Law and Orders can’t match SVU—they don’t know the color you’re seeing! (laughter)
GE: The MS has affected my eyes, but the problem isn’t seeing, because I can always see if I just stop and look. As long as I’m not moving, everything is fine and I can read and see everything pretty clearly. The problem is when I’m walking—I have a really bad sense of balance because my eyes don’t work the right way. All the parts kind of work against each other.
CC: You don’t wear glasses?
GE: I have a set of glasses. I wear them when I’m watching TV at home at night. I don’t need them for driving. For whatever reason I see better without the glasses right now. It’s like my chair—I’m getting to the point where I’m going to have to have glasses, but I’m resisting it.
CC: Any final thoughts before you get back to work?
GE: The disease, my illness, has been a real worrying process. On some level it’s really interesting; it’s a challenge I intend to win. But when you have a problem like this, you also find the best of humanity. People all around are very kind when you have a disability they can see. They come over to help you. They try. They’re friendly. It’s something that for years I resisted, but now I’m kind of embracing it. And it’s one of the good things that has come out of my situation.
