He’s a Type 1 on TV and in Real Life

Forty-three year old stage and TV actor Stephen Wallem is a jack of all trades when it comes to entertainment. Best known for his one-man musical review, “Off the Wallem,” he is also a playwright, composer, and director. Currently, he plays Thor, a gay nurse with type 1 diabetes, on the Showtime series “Nurse Jackie.”

Stephen was diagnosed with type 1 when he was 10 years old. In June, 2011, he teamed up with Novo Nordisk and the Entertainment Industries Council for a campaign called “Picture This: Diabetes” to increase awareness and encourage better management of the disease. A TV public service announcement featuring Wallem is currently being broadcast nationwide.

The actor recently took a break to speak to
Diabetes Health publisher and editor-in-chief Nadia Al-Samarrie.

Nadia: How hard is it to combine work on the set with managing your diabetes?

Stephen: Well, it’s not like I work two hours straight where I don’t get any breaks. I’m in a very fortunate situation where there’s more downtime than there is work time when I’m on the set. I have plenty of opportunities to check my blood sugar and there’s food everywhere, so there’s no lack of something to eat if I need it.

Nadia: Has playing a character with diabetes made you more open about your condition?

Stephen:  It certainly helps that they wrote in diabetes as part of my character, and that has forced me to be more honest with people I work with. I didn’t used to do that at first, even in non-acting  jobs where I was working as an office temp. I used to be very embarrassed about telling people that I had this condition. I didn’t want to stick out, and I didn’t want to feel strange. But since the day I made the decision to be flat-out honest with people and not try to hide my medical bracelet, people for the most part have been completely supportive. If something came up and I felt my blood sugar drop, or if I needed an extra five minutes to take some glucose, or eat, or take my shots, boy, what freedom it was to be able to do it openly!

A little bit of education helps people understand when you come up to them and say, “I need to handle something right now. Can you give me a few minutes?” Ten times out of ten, they’re going to be understanding. That’s exactly what it’s like on the show. Like I said, I’m in a very easy situation. I have a dressing room where I can disappear to for a few minutes to handle something, so I’m in an ideal situation.

Nadia: Has your role as a nurse changed the way that you manage your diabetes?

Stephen: It certainly has changed my outlook on everything. I’ll never pretend to be the perfect diabetic. Being part of the picture in a campaign to help treat and cure diabetes is important to me. I can help other people with diabetes know that everybody has ups and down with the disease. I’m a kind of figurehead in the sense of being somebody who can stand up and say, “Look, I know you can see me play somebody who has some terrible times with diabetes on ‘Nurse Jackie,’ but you should know that in my real life I have days when I’m right on target, and other days when I get frustrated and want to throw in the towel, and I’m in denial, and I eat terribly. And that I pay for it later because my blood sugar is all over the place.”

Nadia: It’s great to be able to tell people that your experiences may be a lot like theirs. But isn’t there a lot of pressure on you to be a perfect example?

Stephen: I don’t feel any negative pressure. Instead, I feel a brand new reason to treat myself better, not because I’m being held accountable for it, but because if I can help somebody else by the example I set, I’m also going to be helping myself. I really welcomed the chance to talk to other people with diabetes. It’s a very isolated feeling to have the disease. Although there are 25 million people dealing with it, it’s amazing how isolated we still feel.

I’m so grateful to be a part of Novo Nordisk’s outreach because being a spokesperson has benefited me as well as the people I’m reaching out to. I’ve welcomed the chance to be an honest spokesmen whose progress people can follow. I’ve made a commitment to be open about my own struggles and talk about them publicly. Doing that helps others and it helps me.

Nadia: Everyone has a different perspective on how people with diabetes should manage their disease. Do you run into different opinions about your own situation, and has that affected the choices you make?

Stephen (laughs): I was told that at a conference in Washington, DC, that there might be people with conflicting agendas and conflicting statements. But I didn’t see that. Instead I saw a room of diabetes educators and health professionals working toward a common goal. I remember meeting a doctor from Novo Nordisk. When I mentioned that after moving to New York I felt a little lost and wasn’t happy with my doctor, she immediately gave me a contact in Queens with one of the top diabetes specialists in the country and said she would call him on my behalf.

I walked out of there not only with a possible new doctor, but also with a pile of business cards and website addresses. These were contacts and leads that would have taken me a very long time to research if I had started from scratch. So, I felt inspired. It was great, like a fresh start.
That’s not to say that I don’t still have my bad days. Diabetes is something you have to be conscious of 24 hours a day. You can never really forget about being aware of where your blood sugars are, what you should eat, when you should eat, and how much insulin you just took. I’m on two types of insulin-a regular insulin during the day and a 24-hour long-lasting insulin at night. I check my blood sugar at least four or five times a day. Food and exercise are still issues I struggle with.

Nadia: Diabetes certainly compounds the problems involved in taking care of your health. Is that something you’re open about in your outreach?

Stephen: Yes, and I’ll tell you why. I had a wonderful doctor in Chicago I went to see when I was in one of the “start over” phases where you’re trying to get back on track. I knew he was going to check my A1C, so I warned him that it was going to be very high. I guess I was trying to soften the lecture I was expecting from him. He smiled at me and said, “You know, all of my diabetic patients really struggle with this. There’s nothing wrong with you for going through frustrating times.” What a relief it was to hear that. I’d never really heard that before. Since being diagnosed with diabetes at age 10, most of the messages I’d seen or heard in the media and advertising always tried to put a positive spin on things. I understand that, but it didn’t help me on my bad days when I sometimes felt I was the only one feeling that bad.

I think there needs to be a balance where there’s more people looking into a camera and letting other people with diabetes know that “Hey, everybody has terrible times and frustrating times, and the best thing we can do is not kick ourselves for a misstep.” We’re in a really exciting time where we can talk openly about things we never used to talk about. People are open to the realities of other people’s struggles.

Nadia: Have you had problems with your eyes as a complication of diabetes?

Stephen: About 10 years ago, I developed diabetic retinopathy. I received laser treatments on both eyes, but, unfortunately, the bleeding got so bad that I needed surgery on both of them. I had two vitrectomies on my left eye and one on my right eye. I had a wonderful retinologist in Chicago who did the surgeries at Northwestern. We were able to save the eyesight in my right eye, but left eye was too far gone, so I did lose the sight in it.

Luckily I was put in touch with this great ocularist near Chicago, June Nichols, who makes optical shells. She created a handmade shell for me that I’ve been using for more than 10 years. It’s essential for me to have it because I wouldn’t have been able to stay in the acting field with the way my regular eye was looking. Even though my left eye is still there, it’s extremely smaller after the surgeries.  The shell fits over my actual eye and moves with it. It’s just a godsend. You can’t tell which eye is bad, and even people I’ve known for a long time forget which one it is.

Nadia: What was it like for you and your family when you were first diagnosed?

Stephen: We still can’t find anyone else in my family who has diabetes, so it’s very strange. I stick out. None of us really had heard that much about diabetes when I was diagnosed in the late seventies as a 10-year-old. I had no idea what it meant when I suddenly started losing weight and urinating a lot. My parents took me to my regular doctor and then he sent me to the hospital, where I was diagnosed. I spent a week there in orientation, learning how to give myself injections by practicing with an orange and a syringe.

Nadia: How did your parents take it?

Stephen: They did the best that they could, but they had so little information at that time. We had no real frame of reference. Nothing on TV or film even mentioned the condition, and there was nothing in the news about it, and we didn’t have the Internet. We had just what our doctors were going by, from what they knew back then. Obviously, today is a much better time for information. It’s hard to be a kid or teen who’s just been diagnosed with diabetes, but there’s far more information and support out there now than there was when I was a kid. That makes it easier to handle.

Nadia: Thank you, Stephen.

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