Episode 24: Noah Gardner

Noah Gardner is a scientist based in Massachusetts. He was diagnosed with type 1 (juvenile) diabetes in 1995, at the age of 12. While this autoimmune condition is genetic, his diagnosis came completely out of the blue to both him and his family. A little background on T1 diabetes: in an autoimmune reaction, the immune system attacks beta cells in the pancreas (which produce insulin), thus destroying them. Hence the need for insulin and devices like insulin pumps, which effectively act as an external pancreas for survivors. 24 years since his diagnosis, Noah is married with a toddler, working at biotech company Intellia Therapeutics on gene editing. And he is here to share his story with us!

Key links mentioned in this episode:

Juvenile Diabetes Research Foundation

Join us as Noah shares…

  • the classic symptoms of T1 diabetes
  • how he was diagnosed
  • that T1 diabetes is a genetic disease and an autoimmune condition
  • how T1 diabetes works
  • how he has worked to manage his symptoms
  • the distinction between his pre-diabetes life and his post-diagnosis life; and the physical and emotional grieving and growth processes involved – especially as a child
  • technologies that have improved his quality of life (and these get better every year): insulin pumps and a CGM (continuous glucose monitor)
  • what makes T1 diabetes easier to manage than some other invisible illnesses: it’s pretty straightforward, because treatment is very targeted
  • health complications and implications of diabetes
  • that, at 36, he is already dealing with one complication of diabetes: glaucoma
  • the community he has slowly built in his post-diagnosis life
  • how he has become an advocate through the Juvenile Diabetes Research Foundation
  • the stigma associated with diabetes, and how this can affect kids in particular
  • the biggest stressors associated with diabetes: health insurance (an awareness of always being sure to have it), and that you are constantly on alert re: your symptoms and management
  • that there is still no cure for diabetes
  • how being chronically ill has impacted his personal and professional relationships
  • the challenge of traveling with an insulin pump and a CGM
  • his thoughts on the insulin crisis and health insurance concerns with regard to diabetes
  • his tips for living with T1 diabetes, and how families can manage the disease together

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Noah Gardner Uninvisible

Lauren: All right, guys, thank you so much for joining us today. I’m here with the lovely Noah Gardner. Noah is an old friend of mine. He is a scientist, and he has lived with Type 1 diabetes since he was 12. Noah, thanks so much for joining us.

Noah: Thanks for having me.

Lauren: Such a pleasure! So why don’t you give us the rundown quickly and tell us about when and how you first realized that you had diabetes, and how it all manifested?

Noah: Type 1 diabetes is one of those things, where it kind of comes on slowly, and then all of a sudden. So I was in sixth grade, 12 years old. One of the classic symptoms is, you have to pee a lot, basically. Your blood sugars are getting really high; one way to get rid of sugar in the blood is to pass it through your kidneys, and then out through the urine. And so I was peeing a lot. I couldn’t sleep, I was up probably 50 times a night panicked and crying, not knowing what was going on. My parents had enough of an idea that maybe something was wrong, but not fully wanting to accept it, or not quite sure. Then I remember there was one morning I got up ready to go to school, went down for breakfast — and passed out at the breakfast table. And that was that. I came to in a cold sweat. I went to my pediatrician at the time, and it was pretty immediate once we explained the symptoms that I had to go to the emergency room. And they check your blood sugar. The normal range for somebody without diabetes is somewhere between 70 and 130. And mine was probably about 800. So on that scale, definitely, it’s a real quick diagnosis as soon as you get tested. 

Lauren: So the symptoms were pretty obvious to the doctor, it sounds like, and they were able to peg that you had diabetes just based on the symptoms, right?

Noah: Pretty much. And then you have to go down to the hospital and they do the official test. Now one of the things they do is they look for auto antibodies.

Type 1 diabetes is your immune system attacking the beta cells that produce the insulin that regulates your blood sugar.

And so being able to then test for those antibodies to confirm that it’s Type 1, especially with the rise of a lot of other metabolic disorders that may manifest similar to Type 1 diabetes … and then Type 2, and then there’s a Type 1 1/2. There are lots of different things that it could be.

But classic symptoms for Type 1 are: You’re a kid, you’re peeing a lot, you don’t feel good. Loss of consciousness can be part of it. And then actually getting tested for what your blood sugar level actually is.

Lauren: Wow. So when you got this diagnosis … I don’t know a ton about Type 1 diabetes, I know you’re much more of an expert than I am … is it something that your family may have suspected, based on genetics? Or is it something that just sort of came on? Do we know what caused it? 

Noah: Type 1 is a genetic disease. It’s prevalent in families; but in my case, there was no one in my family that we knew of who ever had it. That’s one of the first things that they ask you: Is there anyone in your family that has it? To try to make sense of where it’s coming from, and all that kind of stuff. But for me, there was nothing. So it’s kind of out of the blue in that sense.

Lauren: Yeah, that’s so crazy. 

Noah: As I was saying, your immune system is attacking these beta cells that are producing the insulin. And what actually causes that trigger … You have a gene that suggests that maybe you’re going to get Type 1, but some people get it, some people don’t; people get it at different times throughout life. A lot of research has gone into looking into environmental factors that might contribute to it. A lot of times people will be sick, just like a cold or flu or something like that — and that may trigger it.

But that exact trigger point is not necessarily known at this point.

Lauren: Which seems to be true of a lot of autoimmune conditions. And there’s definitely been a rise in acknowledgement of these conditions by the medical community, so that more people are being diagnosed more quickly, in certain cases.  But also, that there tends to be a genetic and an environmental factor. So it’s sort of that combination of things, isn’t it?

Noah: Yeah. And if I remember correctly, there was a research study that came out a few years ago that was looking at a wide host of data and suggesting that cleanliness, when you’re a kid, can help give rise to it. But whether that’s causation or correlation … it’s one of these big longitudinal studies.

Lauren: Well, they’d say that cleanliness helps with everything!

Noah: More because it’s an autoimmune disease. I have a kid now … I have a two-and-a-half-year-old son, and my wife and I are very conscious about letting him get dirty because it helps build a really good immune system.

One of the thoughts with Type 1 is, that maybe if you are heavily trying to keep your kid clean, and not letting them get dirty, that their immune system doesn’t build up. But who knows, right?

Lauren: People talk about that a lot in relation to peanut allergies; they won’t allow parents to send their kids to school with a peanut butter and jelly sandwich, because there are other kids who are allergic — and so allergic that they can go into anaphylactic shock. And those kids don’t then get exposed to peanuts. And so it is about that micro exposure, isn’t it? So what was it like; were you super-conscious of this diagnosis?

Noah: So sixth grade, I was 12. So I was definitely very conscious. Sixth grade, you’re starting to really see the world. I had a girlfriend at the time. 

Lauren: Noah! 

Noah: Yeah, sixth grade girlfriend means we talked on the phone a lot. That’s about it, right? So you’re really conscious about the world around you, you’re really starting to become the person you are. And being able to really know that pre-diabetes life … versus, all of a sudden you have Type 1 diabetes. And at the time, it was all insulin injections, long-acting insulin. Insulins have come a long way in terms of how well they work. Now there’s different technology like insulin pumps and stuff like that, but at the time, it was: Okay, no sugary cereals. Cut back entirely on candy — so that first Halloween, for me, was terrible. I remember very distinctly.

I have this memory of my last Halloween. I have friends who had been diagnosed when they were very little kids, and they don’t know anything different. And so, they both have their benefits and their drawbacks, but it was really, really hard for me, as a 12-year-old, to have to totally change my life.

Lauren: Yeah, I imagine. I imagine it’s hard for anyone at any stage to have to totally change their life, but especially as a kid where you go about your life as if you’re never going to be sick. There’s no real understanding of: I could get sick with something later on. Going from that carefree attitude to something very different from that. So what steps did you and your family take to keep you healthy? I know that you said that you cut back on sugars and that you were injecting insulin. But how has that developed over time?

Noah: One, technology has helped, as I was mentioning. Blood sugar testing that took about a minute to get a reading, now it takes five seconds. So just waiting for those numbers and the accuracy on being able to test your blood sugar has developed quite a bit. People who are older than me will remember back in the time when you had to pee into a test tube, and then boil the test tube and then add a tablet. And if I remember correctly, it would be orange, green, or red — meaning you were good, you had kind of high blood sugar, or you were really high blood sugar. And that was the resolution. And that’s people that I have met over the last couple of years, so not that long ago. I’m kind of getting off subject of what you asked, but …

One of the nice things about Type 1 diabetes, compared to a lot of the other illnesses that you talk about on your show, is that it’s really clear-cut. One, you are no longer producing insulin so you need to balance by giving insulin into your body, and then balancing the sugars on the other end. So it’s actually a pretty straightforward disease in terms of management. Therefore, there have been huge rises in this technology, going from developing new types of insulin that may last different amounts of time to give people more flexibility. I wear an insulin pump that’s connected to me at all times. 

Lauren: I think you got that when we were in college?

Noah: I got it right before I went to college, Valentine’s Day my senior year of high school.

Lauren: Oh, how romantic!

Noah: Very romantic! I spent the entire day at the hospital, and then brought flowers to my girlfriend at the time.

For better or worse, Valentine’s Day is also my pump anniversary. So it’s an extra happy day for me!

Lauren: What is an insulin pump, how does it work? Tell us, because there are going to be people listening who are not familiar with this at all.

Noah: Yeah, so as I said, someone with Type 1 diabetes doesn’t produce insulin at all any more. Insulin is a protein in your blood that allows the sugar that you’ve eaten to enter your cells. So if you don’t have insulin, the sugar builds up in your bloodstream and you can’t metabolize it — and your cells need that to be able to do all the things that they do to keep you alive and a human. So, to get insulin, you typically do a subcutaneous injection, so you inject it into your fat somewhere in your body. With an insulin pump, instead of having you do that, you put in basically a small plastic catheter that goes into your fat. And then it’s connected to a pump. And that pump slowly, over the course of the day, infuses insulin into your body. Or when you’re going to go eat food … when you eat food, you’re taking in a lot of sugar, a lot of carbohydrates, and you want to counteract that by giving it insulin to help yourself process it. So you would give a bolus, which is just a bigger push of insulin at the time. So, what kind of rates you tell the pump to give is totally up to you. It’s really a lot of guess-and-check. You go see your endocrinologist every three, four to six months, depending on how you’re doing; you review your numbers and decide if you should bring the rates up or down at different points throughout the day.

And really, it’s a lot of guess-and-check. There’s a science to it, but a lot of it is: good luck, see you later, let’s see what happens!

Lauren: Well, it’s guess-and-check when you’re constantly checking your insulin and then injecting. It’s more immediate, it sounds like.

Noah: Yeah, it’s immediate. I had the opportunity when I was in high school to go on the pump. And it scared me to death. I waited a year. Because the nice thing about being on injections is you give these long-acting insulins that will cover you for hours at a time, and you don’t think about it. Whether that’s the best method for you or not really depends on who you are and what your lifestyle is. But you didn’t have to think about it that much. You would give it, and if you went high, you went high; if you went low, you went low. And then the next time you had to give insulin, you would make adjustments. With the pump, it’s a really, really fast-acting insulin. And that’s why you can infuse it and it kind of just works all the time. But since it’s directly attached to you, if it were to come out … or if it were to stall, or if it were clogged … you’d be getting absolutely no insulin at all.

Which means your blood sugar would go really, really high — which can lead to you losing consciousness, having a stroke, having a seizure, being hospitalized. So that type of responsibility for me, when I was a junior in high school, was really, really scary.

So I waited a year and and then went on it.

Lauren: Although it sounds like it gives you freedom, does it also create restrictions in other ways? Did it prevent you from playing sports? How bulky a thing is it that is sort of connected to you all the time?

Noah: So … did I say that insulin pumps are often confused with pagers … if people are old enough to remember what a pager is. You and I are, but maybe some of your listeners are not! It’s a little bit thicker than a cell phone, and about half the size of a cell phone. It fits in your pocket pretty easily. And it’s attached to you at all times.

So it’s basically having an external pancreas, which is where your insulin is produced in your body. You’re tethered to a device at all times; so you do lose some freedom, some flexibility there.

But for me, it’s always been, ‘Well, now that I have this, I don’t have to worry so much about what I’m eating because if I’m going to eat food, I can give insulin right away.’ Instead of having to really manage when I would eat — the time and the amounts.

Lauren: You also mentioned complications if your body isn’t receiving insulin. Now, you’re a scientist and you understand this stuff really well. But when you were a kid and you were first diagnosed, did it bring up an awareness of your mortality and of your lifespan? And how this is going to affect it long-term? What was that like?

Noah: As a kid, no. Being 12, you didn’t think about it that way. It’s just, this is now. But, yeah, as I’ve gotten older, the more you start thinking about complications from diabetes and blood sugar control, it definitely weighs on you. There’s a lot, right.

You think about just having lots of sugar in your bloodstream … it can build up and cause plaque and cause cardiovascular problems. Sugar in your blood can affect your teeth.

So my teeth, both through just normal genetics and being Type 1 diabetic, are terrible. Because you have sugar in your gums at all times. And so trying to take care of that is another challenge. And then one thing I’m facing now …

I’m 36 years old, and I have glaucoma already. Which is something that I have a family history of, but it’s also a complication of diabetes. So, not only is it managing blood sugar levels and insulin intake, but it’s also managing all these other potential complications that come along with it.

Lauren: And from the way you’ve described your journey to understanding your own situation, it sounds like you have a community … people you’ve spoken to who are also Type 1 diabetics, as well as a supportive family. Can you tell us a bit about how you met different people in the community, and who your advocates were when you got sick?

Noah: Going back to the beginning, I grew up in a really small town with maybe 3,500 people at the time, 20 people in my class. So from sixth grade till I got to high school, we knew … one person? As I said, there was no one in my family who was Type 1 diabetic, and we knew one kid from town who was. What was really great was, his mother came over the week that I came home from the hospital and talked to my parents for a long time. So really, those first three, four years it was my parents and my medical team. Once I got to high school, I met more people. I went to a big regional high school, five towns, about 1,600 students in the entire high school. And there were probably 10 of us who were Type 1, and we would run into each other at the nurse’s office at lunchtime, checking our blood sugars. Or when we didn’t have low blood sugar, we would have to go to the nurse, just so that the school was making sure we were okay. One of my best friends now, who I met in high school, is also Type 1. So, it was meeting people really slowly. And then as I got older, when I went off to college, there wasn’t much support there, to be honest. I didn’t know that many people there.

Lauren: Just as an anecdotal thing, when I met you, you were the first person I’d ever met who had Type 1.

Noah: Yeah, and I think with the whole invisible illness thing, it’s very true, especially before insulin pumps came in … because, you know, I would give my medicine around my meals, and I would go to the bathroom and give an injection of insulin in a bathroom stall. Just to not bring attention to what looked like shooting up before dinner! It’s a little bit easier now, because you have something that’s attached to you and when you bring it up, people at least know what diabetes is.

Usually, Type 2 … you know, “My grandmother has that.” It’s a very different thing, it’s a very different disease. But it’s all kind of the same in some respects.

But in terms of finding community … it was in my senior year of college, I ended up doing one of the Juvenile Diabetes Research Foundation … JDRF does these fundraising walks … I’m going to go walk three miles, will you donate money to help find a cure for diabetes? I was dating someone at the time who really encouraged me to go do it. My dad had done it years before, but I never really wanted to go do that kind of thing when I was in middle school. And so I did that. And I’ve been doing that ever since. So that’s 14, 15 years — which introduced me to the JDRF community.

I’ve met a lot of people; I’ve started volunteering with them and helping them. And that’s really been where my community has come from, since.

Lauren: Have you ever found that you faced judgment for having Type 1? Because I think the way that most people are familiar with diabetes is Type 2. And usually when we see people with Type 2, it’s one of two things — age or weight — or, you know, lack of activity. And I feel like there’s a lot of judgment attached to that. I wonder whether you’ve ever faced having to say, no, this is different — and explain it to people; the burden of having to educate people about your condition?

Noah: Absolutely.

Most people, especially now, when they hear the word ‘diabetes’ … they think of Type 2. Which is still also very much misunderstood. It’s still a genetic disorder; it’s an inheritable disease. But the effects of it can be lessened through diet and exercise. So it has the stigma of older overweight people, just because that’s how the disease progresses.

If you can get your diet in shape, and you can exercise, you can help a lot. Whereas Type 1 … there’s really nothing you can do other than insulin therapy. So, yeah, you spend a lot of time trying to explain to people, why what I have is different from what your grandmother has. And it’s picking and choosing when you do that. Sometimes it’s appropriate; and sometimes I’m exhausted and don’t want to have to do that. But, I think, for the most part, education is key. The more people try to understand what this is, and what it means, all the better. One of the things that I’ve heard through other people is that because of the prevalence of Type 2 diabetes, and the stigma that goes along with that, that you referenced, there are a lot of kids out there … especially in the media, where people joke about eating too much sugar which causes diabetes, and all this kind of stuff, and the stigma that goes through the media on TV … kids really feel that a lot.

Type 1 diabetes, it’s usually when you’re a kid that you get diagnosed. And that’s hard. If you’re a young kid who sees your favorite TV show making fun of diabetes, that can be really hard. And that is something that a lot of kids face today.

Lauren: And that’s where it’s important to to have the community and to find ways to get involved. Like you have with the JDRF. You have to find other people who are like you, so that you have a community of people who get it, right? You’ve mentioned a little bit in terms of what it used to look like when you’d have to run to the bathroom to inject your insulin, and now you just are checking your levels and adjusting before meals. But can you walk us through a typical day as someone living with Type 1 diabetes, and the considerations that you have to make?

Noah: The biggest thing is, my brain never stops.

My brain is always thinking about: What’s my blood sugar level? What is it? What’s happening now? Is it going up? Is it going down? I’m lucky enough that I have good insurance.

So I have both the insulin pump, and then I have a continuous glucose monitoring system — which are still relatively new, within the last maybe 5, 6, 7 years. It’s a second device; similar to the pump, it goes under the surface of my skin. And it gives a readout of what my blood sugar levels are, every five minutes. So before that, you would only know what your blood sugar was if you tested it. You pricked your finger with a little needle, you’d draw blood, put it on a strip and put it in a meter, and it tells you what your blood sugar is. They said that can be anywhere between 20 and 2,000, technically. Typically, someone without diabetes, as I said, was somewhere between 70 and 130. So you would check your blood sugar … then if it was high, you’d give insulin; if it was low, you’d drink juice or bring your sugar up. And now I’m lucky enough to be able to have this continuous glucose monitor, where I can just look at my pump and it tells me what my blood sugar is. So it takes a little bit of the burden off for me now. But I still have to worry … is it going high … is it going low? I want to eat, I’m starving … but my blood sugars are 350. So maybe I shouldn’t have something that’s going to be very carbohydrate-heavy. I’d want something a little bit lighter, even though I’m really hungry. Or, on the other end, you’ll have times when your blood sugar’s low, and the only way to get low blood sugar up is to take sugar. But it’s two o’clock in the morning … I’m really, really tired … my blood sugar’s low … and I’m eating dinner, basically. I’m eating a whole other meal because I just can’t keep the sugar up. You’re full and you feel miserable. And there’s nothing else you can do.

Lauren: Do the monitors wake you up? Do they give you alerts if something’s extreme?

Noah: It depends. There’s a bunch of different types, a bunch of different manufacturers of these now. The one that I work with will let me know if I’m going low, or if I’m going high. I recently upgraded to a new model, which actually will give small amounts of insulin, or stop giving me insulin — depending on what my blood sugars are doing. So if all of a sudden my blood sugars are coming down really, really fast, it will stop giving me that insulin because giving more insulin is only going to make it come down faster. And that puts me in a dangerous situation. On the reverse, if my blood sugar’s going high, it will start giving these micro-adjustments to help me stay in a good range.

Lauren: So now is a much better time to be a Type 1 diabetic, then!

Noah: It gets better every single year. There’s always promises of new technology.

But the big thing is, with a lot of these things, there’s no cure yet. There’s technology that makes life a lot easier, which is fantastic. And I wouldn’t trade that for anything. But you know, there’s still no cure. There are ideas, but that’s about it. And because the actual root cause as to why your immune system attacks your insulin-producing cells is not fully clear, that makes it really hard to go after.

Lauren: And that must be really frustrating because all you want is to not have to live like this — if you had your druthers, I imagine?

Noah: Absolutely.

And if there were ever to be a cure for diabetes, I don’t know if I’d ever sleep well!  You know, just waiting for it to come back! Because even if there was something that had the promise of, ‘You’re good, you’re fine,’ I would still lie awake waiting for it to come back. Just because this has been my life for so long, now.

Lauren: It sounds like there’s a fear there … that it has given you an awareness, but also bred a certain alarm in you, I guess. So that you’re constantly monitoring, and your brain never shuts off, as you said …

Noah: Exactly. I don’t go more than five minutes without thinking about where’s my blood sugar, what’s happening?

Lauren: And how has that impacted your relationships and your work?

Noah: It makes everything harder! I’m lucky enough, in my relationships, I married my best friend, who I’ve known since high school. My other friend that I mentioned, who has Type 1, she’s known her for longer than I have. She knows this disease really well. So she’s there to support me through it. So that has been great. And in some respects, it’s an easy path, because I didn’t have to explain something to somebody new.

But, you know, that’s always a fear, too. I remember dating people in high school and college, and you have to explain to them, well, this is who I am, this is part of my life. This is how to save my life, if something goes wrong. I have to do that when I start a new job; I have to find somebody that I trust and say, if my blood sugar were to go really, really, really low and I were to pass out, this is what you have to do to bring me back to life.

Knock on wood. I’m very happy. I’ve never been in that kind of situation yet. But, you know, at some point that’s going to happen.

Lauren: I always ask people about this in terms of work … is it something that you disclose to employers when you’re applying for jobs? Or do you wait until you have the job? And, as you say, find someone that you trust to tell them how to take care of you if anything happens?

Noah: It’s definitely not something that I disclose in an interview process. Because obviously, that would be illegal. You never want to do something like that. 

Lauren: It’s illegal to ask; I don’t think it’s illegal to tell.

Noah: Well, it would be illegal for them to deny me a position based on that. But it always takes me a while. I spoke on a panel at one of these Juvenile Diabetes Research Foundation events. It was me and three other people. And this same question came up from the audience. They asked, “When you start a new job, do you let them know?” And it was really funny, because all four of us said, “No, we don’t. This is my life. This is my private space.” And then we actually had, I think two or three people in the audience who worked in HR, and they spoke up right away and said, “You should absolutely let people know.” So I’ve been better about that, since that day. My work now knows.

But it’s one thing to tell HR, just so that they know. And it’s one thing to tell your co-workers as well.

So I’ve always just kind of waited until it comes up. Because I have an insulin pump and it looks like a pager, people always say, “Why do you have a beeper?” I think my boss found out because we went on a business trip. And flying is really hard when you have an insulin pump and CGM, because they can’t necessarily go through the new neutron backscattering security devices. 

Lauren: So you probably have to bring a doctor’s note?

Noah: You’re supposed to, but I never do. I just tell them. They’re well-versed in this at this point, especially in the United States. If I were going out of the country, I think I’d probably bring a doctor’s note. But I have to request a pat-down. So every time I go through security, I’m getting pat down by the TSA agents and that’s how a couple of my co-workers found out because they went right on through security. And then they were waiting for me. And I had to say, Well, this is why. Because it inevitably comes up with everybody. So personally, I just wait until it does.

Lauren: Well, I suppose it’s also judging that boundary — and when you have friends at work, and when they’re just your co-workers. That professional/personal boundary is one that, especially in a new job, you tread very carefully, I think.

Noah: Yeah, and part of my reason for doing it, too …

I just make it so it’s normal. Like, I’m not hiding anything. If I need to step out of a meeting to go have juice or some kind of sugar to bring my levels back up, I just do it. And I don’t make it something I’m hiding; I don’t make a big deal out of it. I just say, this is normal, this is who I am. So it’s kind of a conscious decision to treat it that way — instead of making it something bigger or lesser than it is. 

Lauren: It’s interesting, because you talk about treating it as normal. But you do have to prioritize it in your day-to-day, don’t you? Because if your blood sugar drops, you have to do something about that immediately.

Noah: Yeah. You were talking about fears earlier. And one of the fears that I have is … I’m further along in my career … I have to make decisions; sometimes they’re on the fly.  I have a couple of employees that I’m responsible for.

And one thing that happens when you have low blood sugar is you can’t think well; it’s like your brain goes to mush, or you become really irritable. So I’m very conscious, if my blood sugar’s low, that I’m not making any important decisions; I’m trying to not interact with people, as much as possible, because it could have ramifications in other ways.

Having the continuous glucose monitor that alerts me to low blood sugar is fantastic. Because at the first sign of it going low, I take care of it. I don’t wait.

Lauren: Also you’ve mentioned you’ve got a toddler. What’s it like raising a kid, especially a little one, and managing your own symptoms? Is he aware of the fact that Daddy has Type 1 diabetes, and that Daddy has to run and have some juice? How did you tell him about all of this stuff? 

Noah: He’s only two-and-a-half, so we haven’t gotten into what it is and what it means. We have talked about it. I have nieces and nephews, so I’ve done this with little kids quite a bit. He knows Daddy has medicine; I let him play with the pump, I let him shine the light on it, I let him turn the light on and off. I have to teach him not to pull it because it’s a cord that’s attached to my body. So not only does it hurt, but he could rip it out. I let him do as much as he wants, in terms of checking it out and asking questions.

He doesn’t drink juice at our house. But I need juice from time to time, and so we just call it Daddy’s medicine. So he understands that. He knows that I need medicine, I go to the doctor — but we haven’t gotten to the point as to why. It’s similar to what I was saying about work … just making it as normal as possible.

Like, this is just what it is. But if my blood sugar goes low, and it’s just me and him at the house, it’s scary; he’s not old enough yet to use the phone if something were to really go wrong. He’s not quite old enough to really understand that Daddy needs to take a break and sit. So it’s tough. I do find that when it’s just the two of us, I’m even more conscious of where I am. Just because I have to be.

Lauren: That must be a very heavy burden to carry.

Noah: Yeah, it can be. From time to time, it can restrict me from what I’m trying to do. If it’s just the two of us, we’re probably not going to go for a really long walk, far away, without me bringing a huge backpack full of food and snacks.

The nice thing about being friends with somebody who has Type 1 diabetes is they always have snacks!

The more you have friends who understand that … in college, I went hiking with a friend one time, and unprompted she just brought a whole bag of snacks, which was great. It was like, “Oh, thanks, Mom, like this is great!”

The more you can let people know, the more people will look out for you, yeah.

Lauren: And you can also make friends with the people who always have the snacks!

Noah: Yes, it’s not a bad thing, either!

Lauren: So you mentioned that you’ve done a bit of work, being on panels with the Juvenile Diabetes Research Foundation. Has your experience turned into advocacy on a larger scale beyond that? What else have you worked with them on?

Noah: To be honest, I haven’t done as much as I’d like, just because of work, family; time commitments. But, as I said, there’s a big fundraising walk every year. I work with the New England/Central Mass chapter of JDRF and try to help with family coaching. One of the things we do … any time there’s a new family who registers for the walk, within their first or second year, we assign a coach just to check in with them and offer them support, giving them information about the event, as well as just being a contact person. Because a lot of times, you’ll see families … their kid’s four years old and just got diagnosed, and the parents want to do something because they feel helpless. They feel like they can’t do anything to help their kid. So one of the things they feel they can do is these fundraising events, which do raise money towards research towards a cure.

Being a family coach, some people want to interact a lot, some people don’t. But really, it’s being like a first line of defense, of, “Hey, I understand what you’re going through. If you need anything, I’m here. If I’m not helpful to you, here’s six other people you can reach out to.” So when I hear that somebody was just diagnosed with Type 1 diabetes, I give them my phone number and email and say, “Call me any time you want.”

Lauren: If we haven’t already established it, Noah’s a nice guy! 

Noah: Well, I try, you know! So I’m not taking the advocacy to that bigger level. But I try to do it on a very personal level. 

Lauren: Which is also a time commitment. And those personal relationships can also be more specific and sometimes more fruitful.

Noah: Yeah. And as I said, I remember when I was first diagnosed, I really didn’t want much to do with anything — sixth grade … what is this? But people reached out to my parents a lot to try to help them, and in hindsight, that’s a really nice thing. And that’s something that the community could provide.

Just taking the time to offer help, an ear, someone to talk to … can mean a lot to people.

Lauren: You’re obviously close with your parents. Were they your advocates, when you were a kid? And what was the transition like when you became your own man?

Noah: Hard!

Lauren: You know, having them take care of you and then forcing them to let go. Was it harder for them to let go and let you go away to college and all that kind of stuff, because of the way that you live your life?

Noah: Yes, it was horrible. My parents were fantastic. This happens with a lot of kids who get diagnosed. And some never really turn and take care of it. It’s kind of like, ‘I don’t want to deal with this is; this is something I don’t want to do.’

For the first – at least, three years – my parents gave me all my shots. I didn’t do it myself; they did it for me. Part of it was, I was still a little young and a little nervous about it. Part of it was, they were doing it, so I didn’t want to.

But then it got to the point where I started doing that. And then obviously, when you go off to college, you have to be in charge of yourself. And then that transition … it was probably sophomore year in college … where my mother and I got into so many fights. And it really came down to just saying, “You have done this amazing work for me and helped me so much. But this is my time. I need a clean cut to be able to say, ‘I’m in charge of this. This is on me now.’” And it was really hard. But we’ve moved past that, it was a short amount of time; now we talk about it all the time, and she’s there for me. My parents are both there for me.

Lauren: Well, people have these conversations with their parents as they’re becoming adults, regardless of whether or not they have a chronic illness, right? But it just makes it that much more intense, because your parents are that much more worried about: what if something happens to you? There is the mortality factor. And because when you’re someone’s baby, God forbid that you should be suffering alone, and they always want to be there. It magnifies that conversation, doesn’t it?

Noah: Absolutely.

And as I said, in my situation, they were doing almost 95% of my care. And then to go from 95% to me saying, “I got this — 0% for you. Don’t tell me what to do, I’ll take care of myself from here on out.” That is horrible, and really, really, really hard. But it was something that I really needed at the time.

And, you know, it’s on me, the fact that I wasn’t ready to do it earlier to help them with that transition. But at the time, that’s exactly what I needed. Just that clean break.

Lauren: We were talking about insurance. I wanted to ask you about your thoughts on the insulin crisis that’s going on right now. With the rising cost of insulin and how this is affecting diabetics and their access to being well, what are your thoughts on all of this?

Noah: I can start off by saying I’m probably not in the best position to talk about it too much, to be honest, because I am very lucky to have really, really good health insurance — both through my work and through my wife’s work. So I haven’t personally had to deal with that too much. But it’s scary.

At the end of the day, this is a drug that people need to live. And I do know a lot of people are having trouble getting it.

I do work in the pharmaceutical industry. And I do understand that it can be hard to produce supply, and that that can cause reasons for drug prices to go up. And it does fluctuate from time to time. But there’s a solution somewhere, and it’s just a scary time to think about — and it’s something that I think about all the time.

I need to have a job that has good health insurance, because without it, I don’t know what my life looks like.

As I said, there’s all this great technology out there. And because I have good insurance, I have all of it. But I ran into a situation where the really, really good insurance I had didn’t cover the continuous glucose monitor that I’ve gotten accustomed to. So I’m paying for a second insurance as well. Just to cover one thing.

Lauren: Is it better for you to pay for a second, independent health insurance to cover that, than to just pay for it out of pocket?

Noah: Yeah, it boiled down to paying something like $100 a month to have me covered for this insurance. Versus $250 a month for for the CGM sensors. I had been lucky enough to be able to do that for about a year, before I figured what I needed to do.

Lauren: It’s crazy. When you talk about how these fluctuations can happen in the pharmaceutical industry, my understanding, with particular regard to insulin, is that insulin itself is not hard to produce. And the recipe for it has been around a long time … but you may know better than I do …

Noah: I don’t know if I can get too into that, to be honest. Mostly because I’m not educated enough to speak towards it.

Those are questions about name brand drugs versus generic drugs versus insurance — an unfortunate example of the problems that our country is facing right now in general.

All these things boil down to this one specific example out of many other hundreds of examples.

But we need to figure out a solution. And the problem is, I don’t know if anyone knows the solution at this point, or is willing to put their neck out there.

Lauren: We have to find a solution, because for diabetics, insulin is life, right? If you’re not getting it, it is life and death.

Noah: Yeah. And I know that pharmaceutical companies in general will work with people to get reduced-price drugs, depending on what it is and who they are. There are Facebook groups that I am part of in the diabetes community. I don’t engage with them much. But I do read the posts that come through. And I know that people have had success looking at different suppliers at different prices. It’s just paying attention to what’s out there. To be honest, I don’t know the full story or the truth behind it, other than when it’s obvious that you have this big population who need one particular drug, we need to figure out what to do. 

Lauren: And it sounds like having those community boards and these Facebook groups … if you’re a diabetic and you’re not part of those, and you need community, it’s a great way to get information, and be able to write and talk to other people with your condition.

Noah: Yes, absolutely. It’s not something that is particularly great for me; it’s not something I engage with. But from reading it, I can see there are so many people who just check in with each other every morning. There’s this thing where people post what their morning blood sugar is, and a lot of it’s just to let people know that they’re okay. They make friends through this and maybe are isolated and don’t have other people to touch base with. And it’s just a way to say, “Hey, I’m here, I’m fine.”

Lauren: So, I think we’ve covered so much today. And, I like to wrap up these interviews with some Top Three Lists, which everyone will be very familiar with at this point! And I’m wondering what your top three tips are for someone who suspects they may have an invisible chronic illness, specifically Type 1 diabetes. What would your top three tips be for those people – or potentially for their advocates, if it’s little kids and their parents – what would you recommend to these people?

Noah: Well, number one is: Don’t wait, do something. Go see a doctor, go ask questions. There’s no reason to wait. As soon as you’re suspicious that something is off or might be going on, get started. It might be a long journey, depending on what it is … as I said, with something like Type 1 diabetes, the symptoms are pretty clear-cut and the diagnosis is very straightforward. But for some of these other ones, it may take a long time to find the right doctor, to find the right person to think about it. So that would be one … The second one would be: Once you are diagnosed with whatever’s going on, be kind to yourself.

One thing that happens with a lot of people with Type 1 diabetes is, your life is about control. It’s about controlling your blood sugars and regulating your insulin levels.

There’s a test; it’s a hemoglobin A1C test, that is done both at diagnosis and at pretty much every endocrinology appointment that you’ll go to; it depends on your insurance, the frequency of when they do this. And what it does is, it measures the percentage of your hemoglobin that has, basically, sugar molecules on it. So the more of your hemoglobin in your blood that has sugar, the higher your average blood sugar’s been over the last three months.

So a lot of people end up boiling down their care and self-worth to this one number that you get every three months. And you’re so much more than that. I know for me, and a lot of Type 1 diabetics, this control, and this shooting for the right number, can lead to depression.

That’s something I went through my sophomore year of college. And a lot of it was tied to letting go; letting go of the control and forgiving yourself and not dwelling on one thing. And I think that’s extremely important, just in life —  but especially in your day-to-day if you’re in charge of your own self-care. Sometimes, you’re doing well. And sometimes, you’re not. Understand what happened, forgive yourself — and move forward. And a third one … I don’t know if I have a third one, to be honest. But those two, I think, are the ones that I care about!

Lauren: And how often, and in what way … what are your top three guilty pleasures or secret indulgences, or comfort activities … if you feel your levels dropping, what makes you happy?

Noah: The nice thing about being on an insulin pump is I can give insulin to cover whatever I want. You think about a carbohydrate-to-insulin ratio. And so if I want to have a big, juicy cheeseburger, that’s not good for anybody, but it tastes delicious, I just have to think about: How many carbohydrates are in that? How much fat do I think is going to be in that — because that’s going to affect me hours later. And then I can give the medicine — and maybe it covers it, maybe it doesn’t. But I can always correct it later. And the other thing that’s nice is, when your blood sugar does go low, you need sugar to bring it up. I really, really like peanut butter cups. My son really likes Kit Kats. So we often have peanut butter cups and Kit Kats in the house, which is nice!

Lauren: No juice, but Kit Kats and peanut butter cups!

Noah: It all works! Some better and healthier and faster than others. Obviously the trade-off is, I still have to worry about cardiovascular and all that kind of stuff. But in the moment, it’s really good.

And I will say that when you have low blood sugar, like legit low blood sugar, food tastes so good. It has never tasted better than when your blood sugar’s in the 40s.

Oreos, specifically. My wife doesn’t allow us to have Oreos in the house. Because when your blood sugar goes low, your brain kind of doesn’t really work. And what takes over is that whole … I need to get my blood sugar up. So what happens with me with Oreos is I’ll probably eat 20! That’s obviously going to be a problem sending my blood sugar high afterwards. But as I said, they taste so good!

Lauren: I know you also mentioned about being kind to yourself. Are there any other practices that you have to be kind to yourself, and to give yourself a little treat … even if it’s not a food thing?

Noah: I think for me, it’s always more of a mental conscious[ness] effort, because my default setting is to beat myself up about everything. So for me, it’s really just taking that extra time mentally to say, ‘Oh, this is fine. It’s okay.’

Meditation has worked for me quite a bit in the past, to just clear your head. Music is my everything. I can’t deal being in a space that’s quiet. It just changes everything; it changes the mood, it just allows me to forget what’s going on. So just things like that, just ways to realize that life is amazing. And to not worry about all those fine details, since it’s going to sort itself out. 

Lauren: And this is a question that’s been nagging me to ask you … do you think that you became a scientist because you’re a Type 1 diabetic? Because you’ve always had this sort of different approach to your own health? And you’ve had to have a scientific understanding of what’s going on in your body?

Noah: Yes, absolutely. I hated science; going into high school, I didn’t want anything to do with it. There were different levels of science. And I would make sure not to take the highest level; because I thought, ‘I don’t like it. I’m not good at it. I don’t care about it.’ And then I had a teacher my freshman year of high school who basically changed my life. He was the type of teacher who you hated until the end of the year — when you realized that you loved him. He made us do presentations on emerging topics in science. Just kind of open-ended. And it was general science; it wasn’t biology, it wasn’t chemistry, it was just science. I gave a presentation to the class about Type 1 diabetes, and the insulin pump. And as I said, I wanted nothing to do with science and I was very shy about my own personal diabetes at the time. It was the first time I ever talked about it openly, in front of people my age. I look back at that, and that was the moment that things started to turn. The next year, I took a lower-level biology class. I got a 98% in that class, and then tried to take a lower-level chemistry class. And that teacher said: absolutely not. So that was another one that set me on the path.

But yeah, I mean, my life is a science experiment. Every day, it’s a science experiment.  You try something out, and see what happens.

At my job recently … we do these little, like, bio-sketches over lunch, just so that people get to know who you are. And I talked about being diabetic and the work that I do with JDRF. And one of the people there was saying, how it’s really interesting when you work with people who are working on cancer research, they all say, “I know someone who had cancer, and this is why I’m here.” And when you work with people — this isn’t necessarily what I do personally — but when you work with people in an autoimmune space, people will say, “I have an autoimmune disease,” and that’s why they’re there. Absolutely, it’s why I do what I do, to try to help other people.

Lauren: Yeah. And it all started with an opportunity for empowerment, and you just ratcheted it up from there. Well, Noah, thank you so much for being on the show today. I am so glad that we got to catch up a little bit!

Noah: Yeah, thanks for having me! This was fantastic.

We welcome your thoughts and comments!

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