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Diabetes Forecast

The Healthy Living Magazine

Actor Stephen Wallem Puts Diabetes on TV

On "Nurse Jackie," he offers the most authentic portrayal yet

By Carolyn Butler ,

Photograph by Vincenzo Lombardo/Getty Images

As a kid, Stephen Wallem spent countless hours in movie theaters and in front of his television, and wondered why he never saw any characters with diabetes. "It was tough, having no media images that I could relate to," says the Rockford, Ill., native, who was diagnosed with type 1 in 1979 at the age of 10. In fact, a full decade passed before Wallem saw diabetes on the big screen, in 1989's tragicomic tearjerker Steel Magnolias, starring a fresh-faced Julia Roberts as Shelby Eatenton, a young woman with diabetes whose yearning for a baby puts her health—and life—at risk.

But instead of feeling a sense of kinship, Wallem was appalled. "No offense to anyone involved in that film, but I was infuriated by the scene where the Julia Roberts character has an insulin reaction," he recalls. "I only speak for myself, but it was completely different from any time I'd had an insulin reaction, to see her flailing about, freak out, throw things, speak in tongues. My mouth was just gaping open, thinking, 'This is a major film character with diabetes—it's a central part of the story—and how irresponsible that this is their picture of what it's like.' "

Little did Wallem know that one day, he'd be playing one of television's first significant, recurring characters with diabetes: Thor, the burly nurse with heart—and a biting tongue—on Showtime's acclaimed series Nurse Jackie. Over three seasons, the dark comedy has believably addressed issues like having an insulin reaction on the job (and then getting in trouble with a higher-up who's clueless as to what's going on). Each one has been inspired by Wallem's own, often challenging experiences with type 1, including the diabetic retinopathy that left him blind in one eye, at the age of 31.

"Pretty much everything you've seen so far with Thor's struggles with diabetes has been ripped from my own diary—everything—which makes playing the role both difficult and kind of comfortable," says Wallem, now 43 and living in New York City, where he's filming the show's fourth season, which is planned to air this spring. Ultimately, he hopes that his TV alter ego will finally give people with diabetes someone to identify with, while improving public awareness of the disease.

"I believe that art can get a message across a lot stronger than a doctor or a brochure—that it's going to hit home more if someone is seeing a character or a situation they're invested in," explains Wallem. "At the same time, I'm aware that not everybody gets Showtime, and that we need these kinds of messages and characters and situations all over the place, in film and television." To further that mission, Wallem recently started working with health care company Novo Nordisk and the nonprofit Entertainment Industries Council on "Picture This," a new campaign that aims to inspire more—and more genuine—media representations of people living with diabetes.

Let's start at the beginning—when did you learn that you had type 1?

I was 10 years old, and I was actually very healthy up till that point. To this day, we know of nobody else on either side of the family who's had it. As a 10-year-old, I don't think I had even heard the term "diabetes" before, so it was frightening. I'd never been in the hospital and just going off what the doctor was saying, it was obviously going to be an instant life change for all of us: I learned how to give myself injections with an orange and a syringe. At that point, there was no home blood testing, you still had to urinate on the stick, and that, of course, was no fun, ever. Also, my parents suddenly had to become very strict with what I was eating. So much was just about leaving it up to my parents to help with this new discipline.

How did they handle the challenge?

I have the most supportive, loving, nurturing parents in world, so of course they said "we will take this on and do the best we can." But we weren't left with the greatest amount of information; it was sort of like "here's a couple brochures, he needs to do this and this and this, and urinate on a stick and there you go." I don't think the really serious aspects of "down the line this could happen with diabetes" were mapped out. I have no memory of being told how life-threatening this disease is. That's probably for good reason, because [the doctors] didn't want to scare me at that age, but part of me wishes more of that would have been instilled, because I wish I would have learned to take better care of myself, earlier.

My parents did the very best they could, but there are so many emotional and psychological connections with having this disease, and I think my parents felt bad depriving me as child—saying suddenly you can't have dessert anymore, you have to weigh all of your food—so it was difficult. When I got a little bit older, I saw a doctor who told me that my pancreas was actually still producing a small amount of insulin, and the unfortunate effect of him telling me that was, psychologically, I took that as "oh, I don't have to be as strict," and my parents, quite frankly, got that impression, too. So it started this snowball effect of us all not being as strict as we had been the first few years, when we were really being adamant about portions and exactly what I was eating.

Stephen Wallem
at a Glance

Birth date: June 14, 1968

Hometown: Rockford, Ill.

Professional Pursuits: Actor, singer, playwright, composer

Current Role: Thor, Nurse Jackie, Showtime

When did you start taking more responsibility for your own health?

Once I hit high school, I was a little more grown up and responsible for myself, but I went through a terrible stage where I thought, "Well, I'm a little more on my own here, so I'm going to do what I want," and I probably went that entire time without paying much attention to what I was eating. I mean, I was not this big rebel going out and staying out all night, every night, or stealing cars. Far from it, I was a musical theater kid—that was the tough crowd I hung out with [laughs]—but my rebellion really came from me just saying, "You know what, I'm going to pretend I do not have this disease." I still took insulin and saw my doctor, but every time I took an A1C test, I knew what the results were going to be: out of control. You know, you're young, you don't think about the long-term results.

When did it all finally catch up to you?

In my 30s. Of course, you can't pinpoint what caused what, but we do know this is a progressive condition, and if years go by where you're not taking care of yourself, it's going to catch up with you, one way or another. All these habits [from my teen years] led to my adult habits as well. The technology changed, blood glucose monitors came up, but I still didn't change my general philosophy or regimen. I was never strict with myself, and I regret it. I'm always wary of putting it that way, because I'm not somebody who likes to live with regrets, as far as punishing myself. But the truth is that maybe I could have avoided these adult complications if I had been more disciplined when I was younger, before all the severe stuff started coming down.

What "severe stuff" are you referring to?

It started [at 29] when I suddenly began seeing those floaters in my eyes. My doctor said that sounds like the beginning stages of possible retinopathy. So she sent me to a retinologist, and that's exactly what was developing in both my eyes. That started a couple years of getting laser treatments, but it got to the point where I was actually onstage [performing in the play Forever Plaid] when in one of my eyes, many more blood vessels burst at once, and I was completely blind in one eye while I was performing.

Luckily, it was a show I had done for 12 years and knew like the back of my hand, and I was onstage with friends, so I finished the last 10 minutes. It was scary, of course, but I could see out of my other eye. When I got back home to Chicago, I [had] to go in for surgery, for two vitrectomies. [The one on the right eye healed perfectly, but the other had complications, and after another unsuccessful operation] I completely lost sight in my left eye.

That must have been tough to deal with . . .

I was still at a place of denial in a lot of ways. I'd heard you could have problems with blindness, but it still came as a shock, because I was young and immortal! And as an actor, of course, I was frightened, thinking about how it was going to affect my career in general, and also aesthetically—all of the surgeries caused a lot of shrinkage in my left eye, and it was clearly not going to look the same as it had.

For a good six months I had no prosthetic at all. I was still performing, but on stage, kind of far away from the audience and not as noticeable. This was long before I was on Nurse Jackie, and I didn't have to worry about being up close to a camera yet. So I actually did OK, but I was completely self-conscious. I knew I couldn't stay that way and have the career I wanted. Thank God, my retinologist said, "There's this amazing woman, June Nichols, who makes these shields for your eyes, and she happens to be in the suburbs of Chicago and is the best in the country, if not the world." I was lucky, because enough of my real eye was still there, attached, that I didn't have to have a complete prosthetic eye. Instead, I have one of these shells that fit over your existing eye and moves naturally. It's sort of like a seashell shape, a giant thick contact lens that fits right over the eye. If I had to have this situation, for me to be able to keep my real eye was a huge plus, because visually, people couldn't tell the difference.

Where does your health stand at the moment?

To be completely honest, I have periods in my life of being really great with my diet and getting exercise and feeling really good about my discipline, and then for one reason or another, I fall off and I'll be in denial, frustrated and angry all over again. I take my insulin, but that's all—otherwise I pretend like [my diabetes] isn't there—which is left over from those childhood habits. Right now, I'm more aware than I've been in years, as far as really being conscious of every choice I'm making about food and exercise. I'm on two types of insulin: I take at least two fast-acting injections during the day, and then a longer-duration, 24-hour one at night. I check [my blood glucose] at least four times a day, if not more. [But] my numbers are high. I still roll my eyes every time I go in to get an A1C check and tell the doctor upfront, "It's going to be really high."

Let's switch gears and chat about your work. In 2008, you landed the role of Thor—how did he end up with diabetes?

Well, in Season 1, there were never any references to it at all. But what happened is that I had been wearing my MedicAlert bracelet on set, and everyone liked how it looked. You know, it's very cool, stylish leather, and it was a big thing for me to start wearing it, because it wasn't until I finally saw, OK, you don't have to wear a big, silver, "you have this disease bracelet" that I put it on. So I wore it for the whole season, every episode, even though diabetes was never mentioned.

My sister [Linda Wallem] is a co-creator of the show (and I actually had to audition much harder because she was my sister). I went to read for another role, the producers liked me, and they wrote the role of Thor for me. My sister took me out to lunch before Season 2 and said, "We're thinking about incorporating your struggles with diabetes into Thor's character, specifically about losing your vision. How would you feel about that? We want to make it authentic, and we're going to check with you every step of the way about how to portray this."

Initially, the thought of reliving it all—thinking about having a scene where Jackie figures out I'm blind in my left eye, that I've been hiding it from everybody, and then another scene where I actually take out my eyepiece and show it to Jackie—the thought of doing that in front of 3 million strangers was horrifying. But it took half a second to realize, yes, of course I have to do this, because the challenge as an actor to do something so personal will be amazing. But also, in the bigger sense, I remembered all those years of not having a diabetic character on television to look up to or relate to, and I realized I'd just been given the chance to be that person. I never dreamed in a million years that my acting career would lead to an opportunity like this.

Were you nervous about how Thor—and your performance—would be received?

I definitely spent a lot of time after I'd done all these scenes wondering, "How is this going to come across? Is it going to be realistic? Are people going to be moved by it, or is it going to seem preachy and strange? Are people going to be turned off and horrified by the fact that I'm showing my eye the way it really looks?" But the truth is that the impact, in terms of hearing from diabetic viewers and from people who were family members of diabetics, was incredible—they saw [the show] and were just so moved by it.

You know, as an actor, you're so self-involved so much of time—you're always looking for the next job, very much focused on you, you, you. So to have this chance, for part of my career to open up into something bigger, is amazing. Like, a father contacted me because his 4-year-old daughter was going to have her eye replaced. He showed the scene to his daughter and she understood—it made her feel better to see this man has a piece that fits over his eye, look how good it looks. I think I cried for about 10 minutes, just realizing the impact you have being on television.

Is there a particular storyline you're most proud of?

There's one episode where I have an insulin reaction in the middle of a trauma scene, and I thought, "I'm going to be the anti-Julia Roberts here and show the world what an authentic reaction is like." And the writers and prop and costume people were asking me stuff all along the way, and I said, "I've got to be dripping with sweat." Visually, I wanted to make sure that it looked as accurate as possible.

Immediately, once [the episode] aired, I started getting Facebook messages, Twitter messages, and letters to my agent from a variety of people—quite a few who were my age and had diabetes—who were just so grateful there was a character sort of representing them, saying, "I can't believe I just watched somebody deal with the same thing."

I went most of my adult life without telling people about my diabetes—really until I [lost my vision and] had no choice. [It was] out of embarrassment and shame and fear of being perceived as "abnormal" or different. You sort of keep your fingers crossed that it will never have to come up. The second I was forced to start being honest in the workplace, it became so easy from then on. I realized people are so willing to be informed and really want to help, and it's just not a big deal.

Is it tough to manage your diabetes when you're filming?

On set, everyone's aware of it and my scenes are short. If I need a break, I will take it. Most of the time, I'm just sitting around waiting anyway. I have plenty of chances to check my blood sugar—it's really the ideal situation for that.

Doing a play is another thing, though—like in Forever Plaid, all four of those characters are onstage for 90 minutes, from curtain to curtain. I did 2,500 performances [in nine different productions over a dozen years], and it's a very physical, exhausting show, so that was a challenge for me. But I always made sure I had glucose tablets or something on set, hidden on pianos.

Any idea what lies ahead for Thor in Season 4?

I feel like we've touched on a few serious issues, but there are so many more, as far as me being a man of my age, in the workplace and dealing with relationships, that haven't been touched on. Like the whole thing of dating someone new, and let's say they have no experience with diabetes—that's a huge challenge. I think it's also going to be an ongoing thing with Thor's dealing with his diet. He has a sweet tooth, as do I, and that's the tip of it.

I think it's also important to make sure that Thor isn't just a diabetic. I don't think anyone with diabetes wants people to think that it's the only thing that defines who they are as people; it's just one aspect of our fabric that we want people to understand more about. And no matter what, I want to do everything in an entertaining way, because the last thing I want to do is be preachy.

Has being a spokesman in the "Picture This" campaign changed how you handle your own diabetes?

When the Entertainment Industries Council contacted me, it was a godsend. Of course, I wanted to be somebody people could look at and identify with, and be really open about my struggles. But I also wanted to be held more accountable for how I was dealing with myself—I looked at it as a way for me to get back on track, too. Now, I have no choice but to talk about what I'm going through.

I know, as I've struggled with [diabetes], especially as an adult, that I want people to be honest about how frustrating having this condition is. It's manageable, of course, but there are a lot of frustrations that come with it, and I deal with that all time. My last doctor in Chicago turned to me during a checkup and said, "I want you to know, all my diabetic patients feel the same frustrations you do." That was huge for me to hear because I felt so alone. I had tried different support groups, even tried to form my own, but I just kept feeling alone, like I was the worst diabetic in the world—like there's something, specifically, about Stephen Wallem that's making me fail at managing this disease.

So that's where I'm at right now: It's a really optimistic place. A big deal for me right now is to keep forgiving myself for each misstep, but also realize that the next time I'm presented with a choice of what to eat, when to eat, or to exercise—all these 24-hour choices we have to make as people with diabetes—I can't pretend that I don't have diabetes. I have to be aware of it at all times. So I'm learning to be aware of it, to be aware of my missteps, and to give myself permission to say, "I'm going to try better next time."

 
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