Beta Cell #010: Grace Bonney Transcript

Full Episode

Note: Beta Cell is an audio podcast and includes emotion that is not reflected in text. Transcripts are generated by human transcribers and may contain errors. Please check the corresponding audio before quoting.


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Craig: This is Beta Cell, a show about people living with type 1 diabetes. I'm Craig Stubing.

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Grace: My name is Grace and I'm a blogger and I run a website called Design*Sponge. Design*Sponge is a design blog that I founded when I was 23 in 2004, I was living in Brooklyn at the time and it was right when the Brooklyn design scene was really exploding, but nobody was writing about it. It was just a lot of people writing about fancy expensive designers and no one was writing about all of the cool young kids making stuff out of found materials and I was seeing that on my street everywhere.

I just started taking pictures of things and writing about it on a blog because nobody else was and I think it was in the right place at the right time with the right look and it really just took off in a way I never could have predicted. I think now kids coming out of college know they could probably start a website or our YouTube channel and make money off of it and make it a job, but I really thought it would just be a way to get a "real job". I thought, "If I keep this it's a portfolio and I can use this to apply for a writing job one day," and it ended up becoming the stable writing job I didn't know I could have.

Now I've been doing it for 12 years and it's kind of changed from a website about furniture and product design to a site mainly about the people behind those objects. Everything was really going smoothly at work and I feel like I had it under control and then this giant wrench got thrown in things.

Craig: Can I ask how old you are?

Grace: Sure. I'm 35.

Craig: Which is a really late diagnosis.

Grace: Yes, which is why nobody thought I had it at first.

Craig: Talking about that January of this year, you start feeling weird. What sort of symptoms are you noticing?

Grace: Well, I started feeling sick probably late November, early December of the year before but I tend to be somebody who burns the candle at both ends in terms of working really hard and so I thought I was just tired. Whenever you feel rundown, everyone just says, "You're tired get more sleep," and holidays rolled around. I got a lot of sleep, I still didn't feel any better. I think right after Christmas I was back home and I went to see a movie with my wife and we were sitting there and I went to cross my legs and I didn't have the energy to cross my legs.

I remember thinking, "This is not normal. I've gone from tired to something physically wrong with my muscles," We had just moved to Upstate New York and didn't have a doctor anymore. I made the very first appointment I could make with the doctor wasn't for two months and I knew that something was really wrong. In our part of Upstate New York, Lyme disease is really prevalent. I thought, "Maybe that's what this is. If I mention that they'll squeeze me in." I did and I fibbed a little bit and was like, "Maybe it's Lyme. I don't know." I got in really quickly.

They looked at me, we're like, "You're relatively thin you look healthy. You're probably fine. This is totally in your head," and I had to really push them and they ended up testing me for a billion different things including the West Nile virus. I said, "My dad has type 2 could this be diabetes?" They said, "No, you look healthy. It's definitely not type 2." When my tests came back and I think my A1C was 14 or something and he was like, "It's definitely type 2," and I burst into tears almost like, "Great. Okay. This is the rest of my life." That was how it started.

Craig: Your dad is type 2, do you call him up and you're like, "Look, we both have type 2 now"?

Grace: I did. My parents were the first people I called. I'm an only child, so those calls happen all the time. I called my mom and she was totally in shock and my dad was just very apologetic and was like, "I'm so sorry you have to deal with this but you take your pill and you move on. That's it. It's not that big of a deal," I was like, "Okay, I'll take my metformin," and I remember that was the first night of taking it and not realizing it would ravage my system and me plus metformin just equals nightmare.

Craig: What was that like?

Grace: The worst pain I've ever had in my entire life. I didn't even realize they should have started me on a small dose and then built me up to the full dose. They started me on like the largest dose you could have possibly taken and I just spent an entire night doubled over in pain and then had to call my doctor and said. "Can I please back down to like a starter dose and then work my way up," and eventually nothing was working anyway. Thankfully, I stopped taking them.

Craig: Were you waiting for the alien to burst out of your chest.

Grace: It really, it was that bad. It was one of those things where I was just pacing around the house and we have dogs and they were just following me around they could tell something was wrong. I just thought, "If this is the rest of my life, I don't know how this is going to work." I happen to have a friend Sara Jensen who's the creative director at Beyond Type 1 and she texted me and said, "There's this thing happening now where adults are misdiagnosed and you should really insist they test you". I insisted that with my doctor and he just flat out refused and was like, "This isn't complicated. Your diabetes isn't complicated."

That began my process of becoming my own healthcare advocate and really pushing to get retested. I had to go into Manhattan and go two-hour South to find a different endocrinologist who agreed to test me and all the antibodies came back positive. He looked at me and was like, "I can tell you right now you don't have type 2," That day everything changed. I went back to my GP who initially diagnosed me. He was totally shocked and he was like, "I don't think that's possible, adults don't get type 1," and I was like, "Actually, but they do."

It was this weird terrifying moment of realizing that doctors who I just inherently trust to know everything, don't always know everything. I think that was honestly the scariest mind shift even more than living with type 1. It was just this idea of not every doctor is going to know exactly what to do.

Craig: Especially when it comes to diabetes.

Grace: Especially [laughs].

Craig: When you find out you have type 1, is that a relief?

Grace: It was, it actually was. At that point, I had already begun to suspect that I did. I really wanted the tools to be able to manage it. I was starving myself and wasn't eating and was feeling like, "Is this the rest of my life? All I can eat is salad all the time and I'll never be able to have normal numbers." It was basically a game of how many times a day do I have to take a fast walk just to keep my numbers vaguely within range and that's when I realized I don't have all the tools I should have. That's when I really really pushed for an endocrinologist that understood what I was going through and it took me, three doctors, to get one that I really trusted and loved.

Craig: Is it smooth sailing after that?

Grace: No. It was followed by then having to visit a string of doctors to confirm that there wasn't anything else going on because I had vision problems but really wacky vision problems. Not the typical type 1. It wasn't just that my vision was a little blurry. I was having a hard time focusing. Anytime I looked at an object it got bigger and then smaller and then bigger and then smaller. It was really disturbing. Throughout my life, I'd had a smattering of neurological symptoms that no doctor could ever figure out, so I went back to my GP and he thought there's a possibility this could be MS, so I started getting testing for that.

Then they said, "You're having some breathing issues. Maybe we should have you checked out for heart problems since maybe you've had this for a while." I had to go to a Cardiologist and then I went to a thyroid specialist at Columbia who had a team of 12 doctors look at my thyroid. There's some other thyroid thing that's still yet to be figured out but that was the beginning of, "Crap. This is not going to be a clear-cut answer. It's going to be a lot of patience a lot of letting things settle back down after my body was so out of whack for a while".

I had a cardiologist who walked and again insisted that adults couldn't have type 1 and I calmly reminded him that they could. Then he was, "Well, these problems you're having, they could be your heart. I see diabetics drop dead all the time without any symptoms," and that was my introduction to the world of doctors who know nothing about type 1 and have so little compassion or understanding for what that's like. It took a while to really find a team of doctors I felt really comfortable with.

Craig: Yes, it's definitely that saying, it takes a village.

Grace: I saw somewhere on some diabetes message board where someone said it's getting a full-time job you didn't sign up for and that's very much what it feels like to me. It's this other thing that is just always on in my brain whether it's what I'm eating or drinking or how much exercise or which doctor I need to go to for a check-up. There's just so many things to constantly keep in balance and I'm only eight months in. I feel like now everyone I know who has type 1 who's had it for any amount of time longer than I have, I just have this immediate utmost respect and compassion for what life is like for them.

Craig: How are you doing mentally at this point in time?

Grace: Right now, I feel pretty good. That January through March were probably some of the most difficult months of my life so far, which was just the adjustment of am I going to die when I'm 45. I really thought, "My life has just been like cut in half. That's it." There's some really scary stuff you can read online if you Google, type 1 and adult diagnosis. I just didn't know what to believe. It was a real like, "What have I done to deserve this? What did I do wrong? This is definitely because I ate cake all the time." I had all of those thoughts in my head.

I think it's easy to fall into that and I've no judgment for anybody who does and for myself. I realized that was part of the process.

Craig: Sort of grieving your old self and that guilt you feel even though you know it really wasn't your fault.

Grace: Yes. That was a really hard thing especially with my dad having type 2 and just everyone confuses the two of them. I still get people who are like, "You did always eat a lot of cookies," that sort of thing, which no one does intentionally to hurt your feelings but it does sting. That was a rough patch but I started going back into just regular old talk therapy, and that made a huge difference. Just having somebody to talk to that wasn't my wife or a friend or a neighbor that already had to hear enough about it, I needed a place where I could dump all of that in a non-judgmental place.

That was really helpful and then I started finding all of those private Facebook groups that exist for type 1 athletes or type 1 whatever. There's a private Facebook group for any type of type 1 person. Joining those and talking to somebody really gave me a place to let all of those fears get out into the air and then let them go. After a few months of that, I started feeling more like myself but I really did feel like old me died and I had to really accept this new version of life and it took a while.

Craig: Well, it's really scary?

Grace: It's terrifying.

Craig: Usually when people think about having their old self die and a new one comes out, it's because something great has happened. It's usually not because the old one died in a burning flame. When you start talking to other people with type 1, what's their message like? Are you still getting a lot of that negative stuff all the time or are you seeing the other side of type 1?

Grace: I think it's a little bit of both. I think that depending on who you're talking to and at what point in their process or in what point of their day, I think you can find people who don't seem to have much of a fear about long-term complications or you can find people who are obsessed with that 24/7. I think at the height of me being terrified, I found myself in a group of people who just spent all day, every day obsessing over zero-carb eating and never having a number over like 95. I got into that mindset of, the second I go above 95 I'm going to have a heart attack, that's what's going to happen.

It really was a slow process of I need to expand the types of voices that I'm listening to, and then once I started reaching out a little bit more and finding different groups with slightly more positive outlooks or people who've lived with it for longer, that was really helpful. There are a couple of people in the type 1 athletes group that I belong to, who are in their early 70s who've lived with it since they were eight years old. Just hearing them being alive is a wonderful positive thing. Then to see them be active is really wonderful.

They're not all 100% healthy all the time but I think that's a realistic way to look at life. Most people in their 70s aren't 100% healthy either. I think just having a wide range of people with a wide range of experiences to listen to is really helpful.

Craig: Now where do you think you fall on that spectrum of, "Can't be over 95 at any time," or just, "Who cares about type 1? I'm just going to do whatever I want"?

Grace: Well, I'm well over 95 most of the time. I think at least for right now I feel I'm somewhere in the middle. I would love to have lower numbers than I typically do, but because this is all still so new to me and I'm figuring out how exercise affects me, how this is summer right now and how heat affects me has been really dramatic. I'm still figuring all that stuff out. I feel a lot more calm about all that. I also changed my Dexcom alert to not be that terrifying noise that's a high alert.

[beep]

Grace: I change that salsa merengue song which makes me feel a lot happier.

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Craig: That's a great idea. Maybe I should do that too.

Grace: Yes. It's so negative, it's like this terrible warning noise. We were on vacation in Florida a couple of weeks ago and I just kept getting double arrows up no matter what and I couldn't figure out what was going on. I was like, "If I have to hear that scary horn noise one more time, I'm going to lose it." Then I was like, "Wait. This is just like an iPhone you can change the ringer alerts." I found that silly little one that I think is called tick-tick-tick or something. I changed it to that and now I just feel it's a funny song and it just makes me laugh. Then I correct and then move on.

Craig: Well, the default makes it sound like you're dying, and maybe that's why we get scared when we hear that because we're like, "We are dying," and it's this feedback loop of we hear the sound and then that makes us more scared than we should be.

Grace: For me, I've noticed what a big role adrenaline plays in my numbers, it just for everybody, but that seems to be one of the biggest factors for me is whether or not I'm nervous or stressed out or even if it's psyching up for a big workout or something I just have a really hard time managing my numbers and that state of mind. Realizing I needed to change the way I got that blood sugar number information in a way that felt non-judgmental and panic-inducing was a helpful change.

Craig: How long after you were diagnosed did you get a Dexcom?

Grace: It took a while. I had two endocrinologists refused to approve it for me.

Craig: How come?

Grace: One was like, "You just don't need that, it's too new you won't understand it." It was weird because they had encouraged me to look into that, so I signed up for it and then I signed up for that and for information about an Omnipod. When I heard from both of those, and surprisingly both were approved by my insurance which was amazing, then my doctor came back and was like, "I think you're a little too into your numbers and you pay a little too much attention. I think giving you this technology is going to make you spiral." I had to very calmly insist that I would like to at least have the chance.

They agreed to let me have a trial. It was night and day, having a Dexcom on my arm I felt I could sleep easily. I felt calmer, I wasn't constantly wondering like-- The biggest problem I had was I would eat dinner, have insulin and then go for a dog walk. Then I would plummet on the dog walk because of the insulin while I was walking. I had no idea why that was happening and I couldn't tell, I would just be halfway in the dog walk and then feel I was going to pass out. Getting that basic information has actually made me so much calmer.

Craig: Did you ever go through a point where-- like when you first got the Dexcom that you were staring at it 24/7?

Grace: Yes, totally. I still stare at it all the time. Well, not 24/7 anymore which is good, but a lot. Partially, just because I'm someone who loves information and I think I just had a hard time explaining that to a doctor because I think I understand anyone going a little overboard and being a little too obsessed with it because it's easy to do that. I found that information empowering and to be able to know foods I eat commonly, how they affect me or how caffeine affects me or heat or whatever. It was just valuable information to help me make better choices the next time, and that's all I wanted.

I just wanted tools and some sense of control which is sometimes laughable because you can try your best and it won't make any difference. I don't want to have all the things I love taken out of my life. This gives me a tool to be able to work those things into my life in a way that still works. The way I feel now about my health in general versus the way I felt in even just May, it's night and day.

Craig: After the break, Grace talks about the difficulties and advantages of running a small company while having type 1. I asked her why she decided to come out about her diagnosis online.

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Craig: Beta Cell is partnering with JDRF to release a four-part "T1D Looks Like Me" series November for National Diabetes Awareness Month. Each week we'll explore a new theme that focuses on some of the challenges that come along with type 1 diabetes. One of these themes is what having type 1 is like in school, and we need your help. We want to know what are some of the perks you get because you have type 1. For instance, in high school I got to skip gym classes on days I went low. Pretty awesome, right? Record your story on the Voice Memo app on your phone and email it to social@jdrf.org.

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Craig: It's scary for me to think about how long I've had type 1 which isn't even that long compared to most people or some people, but I feel like I still learn new things almost every day about my type 1 and how it works within my body in my life. I get sick of it. I want to just all be figured out and I have to stop learning things but it's every day I'm relearning because there's always some factor that changes.

Grace: When I was first diagnosed and then I was introduced to the whole concept of honeymoon period and I was like, "Wait that's a thing I have to- Great." Now I have to wait for this other phase to end and then readjust. Then the older I get or whether or not I work out or not will also change how those things work. It was just realizing like, "This is never going to be something I can just set it and forget it, it's just always going to be something you have to pay attention to." It's one of the few places where my work life has been really beneficial for my diabetes life because I've been running my business for 12 years now.

If there's anything I've learned, it's that there's never a place where everything's running perfectly, no matter how well things go. It's just a whole new set of problems that show up every time you hit a new milestone, and it's just always course-correcting a little bit. When I thought about it, that way I realized I'm familiar with this. I'm familiar with this way of living of, of every year or every few months having to really check in see how things are going, change the dials a little bit and see what works and then move forward. Being able to see it from that perspective has been really helpful.

Craig: What is having type 1 been like having your own business and the challenges of being a small business owner. You don't have the advantage of being on a huge corporate health care plan, the cost of type 1 and then also being the boss of a small team and you're checking your Dexcom all the time. How has that changed the way Design Sponge works?

Grace: Well, for starters I'm so lucky that I run the small company because I disappeared off the face of the earth for the first three months I was diagnosed. I just fell into a huge black hole and could not get out. If I had had a regular job in an office, I probably would have gotten fired because I could not handle anything. I was really fortunate that I have a really tiny team of people who are, "Grace is drowning, we're going to step in while she gets her footing." I don't think that would have happened at a regular office job. I feel really really lucky that I have the job I have because I can work my day around.

If I'm having a rough day or need a half-day to just figure out what's going on with my numbers, I can do that and I'm really lucky for that. Now I don't have a huge corporate health care plan, which would be awesome, but I have a decent one. The cost of diabetes are just outrageous and I constantly think about how incredibly lucky I am that I even have health insurance and that I have a doctor that's within a decent amount of distance from me or that I have access to endocrinologist. The fact that I could even go to three endocrinologists to find the right one.

I constantly talk to people on Facebook that are hours away from one endocrinologist they can't see for like six months. I try to put it in perspective constantly that no matter how frustrated I am with the cost of test strips or how long it takes to get into a doctor that I still can so that helps put it in perspective a little bit.

Craig: You decide to come out as type 1 publicly at least on your Facebook page, however public that is. Why did you decide to do that?

Grace: I think because I've lived my life online for the last 12 years. It was never a question in my mind that I would do that, it was just a matter of when. I think I've done so many huge life things publicly whether it was get married and then get divorced and then come out of the closet and then get married and then come out as type 1. All of these big life events have happened online for me and it just feels normal to do that. I've always waited until I felt incredibly ready to deal with whatever the blowback was because that's the biggest thing I've learned from living online is if you put that information out there prepare for it to be editorialized in some way.

No matter how many followers you have, someone will have an opinion about the thing you just went through. I really waited until I felt comfortable enough to deal with people either not understanding it or just being like, "Wait, have you had cinnamon pills? You can be cured," like that sort of thing. I think I really waited until I felt, "I feel really alone right now. If I can step forward and put this out here, maybe there's one other person reading who also has never told anybody and maybe we can talk to each other,"

That's always been my mentality with living online was when you're ready, if you feel comfortable sharing information, it's a chance to connect with other people who understand where you're coming from or to give them a little bit of hope and for the most part I was really so bowled over by the response and how many people were like, "I was misdiagnosed," or their spouse was misdiagnosed or their kids had. It was just a nice way to have that instant connection with somebody and it is this thing that you have this instant understanding of what it's like to deal with all that, so being open about it just feels like a natural thing.

Craig: Seems like it was mostly positive reactions you got.

Grace: A lot of my family and friends still don't quite understand what type 1 is or the difference or just say like, "It's so sad. You can't have ice cream anymore." Sometimes I have the energy to explain why that's not true and sometimes I don't. Sometimes it's not that big of a deal but I think there are people who just totally don't understand it and I try to be patient and explain those things because I know how frustrating it is to hear that and especially for people who have type 1 who are younger.

I think that it can be really devastating to have somebody just fundamentally misunderstand what your life is like and being 35, I have a little bit more maturity. Maybe not a lot more but a little bit more maturity to be able to let those things roll off my back. I think taking that second to help someone understand that helps them later on down the line not to say that to somebody else, that's a valuable moment for me.

Craig: Well, it's only by addressing all the misconceptions that we can correct the dialogue about type 1 in people's minds.

Grace: Yes, like cinnamon pills. Someone just stop with the cinnamon pills. "Haven't you heard that cinnamon pills can cure it. Just take these," and I'm like, "No, that doesn't work."

Craig: Have you tried it?

Grace: I did, I bought a giant thing of cinnamon pills when I got diagnosed or misdiagnosed with type 2 and I was like, "This is going to solve everything," and then I brought them into the first endocrinologist and he just laughed and he was like, "That's not doing anything for you."

[laughs]

Craig: Do you think that your background and experience with design changed how you look at type 1?

Grace: That's interesting, I never thought about that. Well, I think I realized right away that there weren't a lot of websites and groups that integrated diabetes whether it was you know gear or accessories or branding in a way that felt cool and young to me and then I discovered Beyond Type 1 and Libby's shirt that you're wearing right now. I think there are groups that are doing that now in a way that makes it feel cool, like the shirt you're wearing that's Libby's, it's a cool shirt. Period. It looks cool, even if you don't even understand what a pump is or anything.

I think it makes it cool to be proud of what you're dealing with or what you've gone through in a way that I think is nice and I think most of the t-shirts or stickers or branding that I've seen for other diabetes based groups, I wouldn't want to put that on my laptop or anything. It just doesn't fun and cool and interesting. There is something about making all those things seem more visually interesting. That's important and especially I think if I was young and dealing with this, I would really want cool things that made me feel like this isn't a weird part of who I am. It's like a cool different part of who I am.

Craig: The skins you can put on your Dexcom or under Omnipod or your pump or meter to just make it not look so medical.

Grace: I think anything you can do to take the medical nature away from stuff is really important. I just finally bought a cool bag to put all of my testing equipment and all of my pens and whatever. I had just been putting them in a plastic zip bag in my purse and it was like every time it opened my purse. I was like, "Here is the drugstore in the bag." It still made me feel really weird, for lack of better word. Now I feel like just looks like a makeup bag or something. I don't really wear makeup, but it feels like my version of that now and so that makes me feel a little bit more normal.

I was on the bus the other day taking the bus from where we live Upstate and to Manhattan and I realized I have eaten more than I should have while I was waiting for the bus, and I was, "Crap, I need to take a shot," but I was on a crowded bus full of people. There was no way I could turn, that wouldn't be super out in the open. I was seated next to this nice woman and I pulled out my pen and I could see her look at it and I was like, "Crap, she gonna think I'm doing something illegal." I just looked at her and I was like, "I'm really sorry. I have diabetes. I need to take a shot."

Then she just looked at me and she goes, "Don't ever apologize for that. My daughter has type 1," and then we had this two-and-a-half-hour conversation about their journey and that. She just basically was like, "Please don't ever apologize. Don't ever feel sorry for that." It was this really sweet moment of, "You're right. Okay, I won't like." It was just really nice and it was again that instant connection and we didn't even get each other's names until we got off the bus.

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Craig: Beta Cell is produced, recorded, and edited by me, Craig Stubing, and our theme music is by Purple Glitter. Grace has a new book In the Company of Women, which will be in stores on October 4th. If you want one of Libby's t-shirts that Grace mentioned, you can find them at Libby's blog, ihavethesugars.com and if you want to see a picture of me wearing that shirt with Robin Arzon from episode seven, you can find it by following Beta Cell on Twitter, Facebook, and Instagram at @betacellpodcast. Be sure to subscribe to the Beta Cell on iTunes, Stitcher, Google Play Music, and on the NPR One app to get new episodes delivered automatically to you.

I'm Craig Stubing and this is Beta Cell.