Talking with Actor and Diabetes Advocate Victor Garber
You may recognize actor Victor Garber from the numerous parts he's played through the years, from roles in movies like Titanic and TV shows Alias and Legends of Tomorrow, to theater performances that include last year's “Hello Dolly!” on Broadway. But did you also know that he's part of our diabetes tribe, nearing six decades of living with type 1 diabetes?
We had an absolute pleasure connecting with Victor recently, thanks to our friends at non-profit Beyond Type 1, that Victor’s been involved with for several years now. (We also loved the irony of talking with Victor on Easter weekend, knowing that he'd played Jesus in the musical Godspell way back in the early 70s.)
The 70-year-old Canadian actor hails from London, Ontario, which happens to be the “birthplace of insulin,” and a portrait with his story hangs on the wall inside the historic Banting House in that small town.
In our phone interview, Victor showed how kind, open, and down-to-earth he is – as he reflected on his career, the advancements we’ve seen in diabetes technology, and how important he views community. In his words, peer support is key and it's critical to face diabetes “as a team, because we’re all in it together.”
Actor Victor Garber on Life with Diabetes
DM) Victor, thank you so much for taking the time for our readers. Can you please start by sharing your own diagnosis story?
VG) I was diagnosed right around my 12th birthday. It was out of the blue and we couldn't really trace it back to anyone in my immediate family, at least at first. We later realized I had a second cousin who was type 1, so as a family we’d been exposed to it but really didn’t know anything about it other than that.
I was nearly dead by the time they got me to the doctor, because of course we didn’t know what was going on. I wasn’t unconscious, I remember that, but I was close. It was shocking and traumatic, and I remember the look on my mother’s face as she stood there with my father. She was a television personality and actress, and I remember that I wasn’t devastated by the diagnosis, but my mother was hit harder than I was – as I expect most parents are with children being diagnosed. And that was a hard thing for me, to see her in such pain. And then it began and you do what you do.
Did you go to diabetes camp when you were young and first diagnosed?
Yes, I did. For me, diabetes camp was a life-changing experience. I resisted and didn’t want to go, but it turned out being two weeks that I’ll never forget for two summers when I was 13 and 14. It was Camp Banting in Ottawa, Ontario. I remember being so scared and thinking I wouldn’t be able to participate, and of course that wasn’t the case… you realize you aren’t alone. The camaraderie, laughter and support was remarkable. For me, at the age I was, it was just the right moment. I really do think diabetes camp is a very tangible benefit, and I think everyone should be able to go to a diabetes camp if they can.
What was it like being a young adult with type 1 diabetes back in the 1960s?
In those days, it was nothing like we do now. You did urine testing and boiling the needles for insulin injections, and we didn’t have the technology that we do now. By the time I was 16, and had been living with this for a short while, I left home and school and moved to Toronto to become an actor… actually, to become a folk singer. That led to The Sugar Shoppe band, with appearances on the Ed Sullivan Show and the Tonight Show with Johnny Carson. When I think back now, how I ever survived is lost on me. I had hubris -- I don’t think it was courage -- and was just determined to live my life.
Fortunately, I haven’t had a lot of serious complications that have really derailed me in my life so far. I’m 70 now, so I feel like I’ve somehow been spared that side of diabetes – especially since I wasn’t attentive to taking care of myself in those early days as much as I am now. Fortunately I had my wits about me to not go crazy when I was younger; I never got into drugs, or serious drinking or anything like that. Sure, I ate things I shouldn’t have eaten, but I was conscious of my diabetes. Maybe that’s why I am still here, and do feel very fortunate to be doing what I am.
Has diabetes ever stopped you from pursuing your dreams?
I’ve done things in my life that have surprised me, as I could do them as someone with diabetes. And that is my message to young people: That you can do this. When you look around and see what’s happening in the world, from people struggling to come to America and what they go through, really this is a minor thing to live with in the grand scheme.
How did you get involved with Beyond Type 1?
It’s hard to imagine a time when I didn’t know Sarah Lucas, who co-founded Beyond Type 1. She tracked me down and reached out to me, and we met and I thought, this woman is doing something really meaningful. Sure, every research organization is doing something important. But you get to a point where all those other organizations become so huge and you start wondering “What is really going on here?”
I felt a kind of immediate love for Beyond Type 1, because it’s so transparent and can have an immediate effect on people’s lives with diabetes. They are targeting younger people and those on social media, and that’s so universal. To me, it made much more sense than the number of dinners I’ve sat at to raise money for diabetes. Of course, that’s all important. But this is going right to the source and helping people, providing support in meaningful ways every day. I was impressed then and I remain impressed today, and am happy to be a part of it in any way I can. I believe in Beyond Type 1 and what they do wholeheartedly. They have an impact, for sure, and it’s heartwarming for me.
You hadn’t really been talking much publicly about your type 1 before that, had you?
I had attended a few events and dinners, but no I really hadn’t. (Connecting with BT1) was also the first time I’d ever been on social media talking about diabetes. I’ve never been that person. I am not on Facebook and just don’t really share my life with the world. Now, being on Instagram is the only thing I’ve been coerced into doing.
I’m happy to post when it can reach people, through Beyond Type 1 or in the broader Diabetes Online Community. That’s why I started sharing more about my life with diabetes more often, beyond those dinners and events where I can talk with people, because it’s all about social media and that impact.
Social media is always an adventure, isn’t it?
It’s the devil we know. I do have some larger mixed feelings about it (sometimes negative), except when it can reach someone in remote parts of the world, can connect a community to get support and information. That’s the purpose and the reason to do it, for me.
Do you see yourself as having a responsibility to share more about diabetes?
Yes, I do. People are interested in my life because of the work I do, and that can mean something to people. So yes, I do feel a responsibility because I am a face and a voice for type 1, and an older person – a senior citizen, if you will – so I want people to know that this kind of diagnosis isn’t a death sentence. Certainly, it’s going to impact your life. You’ll have to make the adjustments necessary to life with this, as best you can. But it doesn’t mean you cannot achieve the things you want to achieve, to a large degree. If I can inspire one person to be able to see that, what’s better than that, really?
You mentioned being older with type 1... Back in the day it must have been difficult to find other adults living with T1D like you, except maybe Mary Tyler Moore?
I knew Mary slightly, and it took her a long time to get out there and talk about it. It just wasn’t talked about in those days, like it is now. There was a kind of shame, because you weren’t “normal” in the eyes of the world, and maybe even yourself. That’s completely changed and fortunately people are able to share these parts of themselves publicly. Thank God. That’s what we are all doing now, outing ourselves so we can inspire people. We don’t have to hide with diabetes.
OK, let’s talk about your amazing acting career. How was diabetes a factor when you were starting out?
In those days, I didn’t talk about it much, so it wasn’t really an issue. But the people I worked with all knew. When I was in my 20s and did that original production of Godspell in Toronto playing Jesus, with all of those other people who became so famous, they all were aware. There was a jar of honey that we kept on stage, because we never left the stage and it was such an active show. Every show and play I did, I talked to the stage manager and others to make sure there was orange juice or something on the side of the stage. Maybe not everyone understood exactly what type 1 diabetes was, but they knew that if I was acting strange, I’d need that honey or orange juice there.
Any differences you’ve found between theater and movies or TV, in the context of your T1D management?
There is a difference. The last thing I did on stage (in 2018) was “Hello, Dolly!” on Broadway, and hadn’t been on stage in years. I had to really figure out my diabetes management for that again. I was having issues figuring out what and when to eat before a show, and never really solved it, but fortunately got through without any crises.
It was interesting. I was really never on stage long enough to go low, but there were times when I left stage and realized I needed to have some juice or glucose. But I never had any issues on stage. Of course, my dresser off-stage had orange juice and glucose tabs ready, and she was really diligent about my blood sugars – to the point where sometimes I thought, “I’m fine, get out and leave me alone!” But she’s the greatest and looked after me. With movies, mostly you’re sitting around and it’s a different kind of abuse… every day is a different day, and each one requires different things in diabetes. Sometimes there’s no reason for it, and you wonder how you can be over 200 when you haven’t eaten anything and you’re moving all day? It baffles me.
Do any diabetes incident-while-acting stand out?
I’ve told the story from Titanic, where Leonardo DiCaprio went and got me a plate of food because my blood sugar was dropping. That was so very kind of him. When I was doing Alias with Jennifer Garner, she was able to tell before anyone else. She’d say to me, “Do you need some orange juice?” And I’d say “No, I’m fine.” But she had this sort of sixth sense about it, and would say she could tell by the look in my eyes. She was always right. I’ve been very fortunate. As an actor, it’s different from being a mover or long-distance truck driver, and so I had this automatic support system wherever I was.
Over time, there have been a couple examples where I’ve gone low. I remember doing a movie once where I had a really bad low blood sugar and we had to re-shoot. But there have been very few times where I haven’t been able to work, maybe only that one where it needed a re-shoot. So I am grateful for that.
Because of liability, every time I do a movie or a series I have to go through an insurance exam with a doctor. They ask if I have ever had to miss work, and all those types of questions. So all of those things are a part of doing this and necessary for to be able to keep going.
Do you have any preferred hypo treatments?
Traditionally, the honey or orange juice. But now I do more apple slices in the fridge. If I have a couple of those for a low blood sugar, that usually works. And then there’s that trust… that my blood sugar will come up if I wait. I get so nervous and think that maybe if I have some juice too, that’ll do it. But then you’re up to 200 again. I’m still trying to figure it out. And that goes into diabetes management overall.
Any other food discoveries?
I used to love eating oatmeal every morning, with raisins and all that, but that’s a lot of carbs and led to some lows (after dosing insulin), so I changed all that. I’ve now been eating gluten-free toast with almond butter, and maybe a half-cup of blueberries in the morning. So I’m doing better with that. It’s all about constantly re-discovering what works.
What about new diabetes technology? Which devices to you use?
I started out with the Medtronic pump many years ago, but have switched to the OmniPod and also use the Dexcom G6 CGM. I sort of resisted getting that for some time, and finally did surrender to it. The idea of having something always on my body just freaked me out. Of course, I faced it and that did change my life. Now, I have infinitely more freedom. I’m currently working on this TV series that’s coming up in the next year, and the CGM allows me to just feel more comfortable and know the routine. The best thing, too, is that if I have a pick-up at 5 a.m., I don’t have to eat beforehand and it gives me a lot more peace of mind. It’s made my life a lot easier, compared to when I was just starting out. You just had to figure it out on your own back then.
Are you using data-sharing with the Dexcom CGM so others can keep tabs on your glucose levels, especially when you’re performing?
No, I don’t do the data-sharing, though my doctor can see my data (retrospectively). I do use my phone to see the Dexcom data myself. I’m not good with devices, and am just hanging on by a thread with having both the (OmniPod) PDM and the phone for my CGM. That’s all I can figure out.
I’m fortunate that I haven’t had any situations where I’ve been unconscious or needed glucagon, and I’m always aware of my lows. My partner Rainer is very aware of what’s going on and is wonderful, but in terms of sharing that’s not something I have needed and haven’t taken full advantage of. I do think it’s great to have that as an option, especially for children where their parents or teachers may be keeping an eye on them. For me, I am very aware of what my blood sugars are and I wake up and check my phone in the middle of the night, and am very diligent about it.
And you’re always wearing your Pod or CGM somewhere under the costumes, right?
Yes, all the time. But you probably won’t see it. There’s also an unwritten rule with my managers: that I don’t do anything where my clothes come off. Ever. Of course, I also had that stipulation before, but especially now with my diabetes devices. I’ve never had a problem.
Fortunately, the OmniPod is so compact and the Dexcom CGM is very small, so they don’t interfere with costumes. Also fortunately, I’m a man of a certain age and no one needs to see me in a tight costume, so we’re all spared from that. I’ll leave that to my friends like Nick Jonas. He is certainly a sex symbol, and I absolutely love that he’s so forthcoming and public about his being type 1. That’s really been a boon to Beyond Type 1 where that’s the audience. When I think back to when I was just starting with this disease, not only is it amazing that it’s gone by so quickly, but the advancements we’ve seen in diabetes technology are amazing – I want to stress that more than anything. We’ve come a long way, though I am frustrated at times we haven’t gone further.
What frustrates you, in particular?
I have this kind of conspiracy theory building in my brain, about drug companies and what they do. And by the way, they seem to be proven true every time I turn on the news. The amount of money these companies make is obscene, and pretty much every commercial on TV you see is for a drug. I’m just frustrated by it all, and the lack of progress on these issues. I know there are people who are trying to address this, and curing diseases like diabetes, but I do feel like we’re being held back at times. I don’t want to be that guy, but I do wonder what’s going on.
What would you say your hot-button diabetes advocacy topics are?
What I can’t deal with emotionally is the pharmaceutical industry and people not being able to get insulin as they need it. That just cannot continue. I’ve always been lucky and never have had to deal with that personally. Even though the price of insulin is astronomically high now, I am lucky to be able to afford it and am lucky that my insurance covers it. But I just don’t know how people are expected to live like that when they can’t.
Every time I read or see anything about it, my mind kind of goes into this spin because I can’t follow it all. Like when I read about the mother whose son died from rationing insulin because he couldn’t afford it, that just drives me crazy. Maybe I am not smart enough to understand the issue. But I will be going to confront Congress with the JDRF Children’s Congress event in July, to speak about this issue. I’ve told them that as long as they write everything out for me, I’ll do it, because I can’t just talk about this off the top of my head and complain and whine. I’m glad I can be a voice and try to move the needle. This has to be stopped and resolved, it’s not OK and is intolerable.
With your hometown being London, ON, Canada, how does it feel to have your portrait displayed in the Banting House marking the “birthplace of insulin”?It’s really amazing and humbling. I remember a day I was there, sitting on the bed (where Dr. Banting slept and woke up with the idea of insulin as a treatment for diabetes). I had this kind of overwhelming emotional feeling. That he woke up and came up with this notion, right there. I do feel honored. But mostly there’s gratitude, for being born late enough so I could be a recipient of this discovery. It wasn’t long before that time, that I would’ve died. The fact that the co-discoverers of insulin sold the patent for $1, so that anyone could afford it isn’t lost on me, with where we are now on insulin pricing. This would be unacceptable to Dr. Banting.
What’s next for you professionally?
I am always looking, and am not ready to retire; nor could I financially. I’m looking for a script that excites me, whether it’s a play, TV or movie. I’m not really particular on that, but am looking for a piece of writing that is worth doing. I was just in a movie about a DuPont chemical spill, and just reading that script just lifted me to want to be a part of it. It’s a really frightening and terrifying story, but it needs to be told. The writing was so good, and that’s always what I am looking for.
It’s fundamental for me to want to get involved in the story and the way it’s told, and that’s not always easy to find. To me, especially at this point in my life, it’s about the “everyday” and finding joy in what I do – whether that’s living in the moment or something diabetes-related. I meditate and do yoga for stress, and that’s really an important aspect to health. And I am just really about living today, and being an example, to help kids and people who may not have that (balance) in their life. It’s easy to feel overwhelmed and inadequate, and I certainly go through that too, but there’s so much we under-value about our impact in life – whether it’s an act of kindness, or support. The way the world is today, I just don’t know what else to do.
Thanks again for taking the time to talk,Victor! We so appreciate your approach to life, and to diabetes in particular.
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This exclusive interview was originally published at DiabetesMine on April 24, 2019