Beta Cell #019: Anastasia Brien Transcript
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.
Craig: This is Beta Cell, a show about people living with type 1 diabetes. I'm Craig Stubing.
Craig: Type 1 diabetes not only changes your life, but your families too. Sure the butter compartment of your fridge becomes the insulin compartment and there's a drawer in every house full of test strips, lancets pen needles and more. Every vacation comes with an extra bag full of fruit snacks and backup supplies. It also changes the personal relationships. How do you worry about a family member while also not limiting how they live their life. Delilah was diagnosed 10 years ago when she was just five years old. I'm going to let her mother Anastasia take over the story from here.
Anastasia: At that time I did not even know what type 1 diabetes was. I don't think I had any understanding that there were two types of diabetes. I had a very vague general awareness of type two, I guess, the stuff with the oatmeal commercials and all of that. I never really knew what type one was until that fateful day. She was diagnosed in a bit of a crisis at the age of five. Then after that shock wore off, we entered into TrialNet which is that program which seeks a blood sample from first degree relatives of people diagnosed with type one.
My husband and my son got a letter in the mail and I got a phone call and within a year I had a diagnosis of type one diabetes at the age of 40 something shall we say.
Craig: Can you talk to me a bit about that phone call you got? What was that like?
Anastasia: That phone call actually came from Delilah's endocrinologist. We took the TrialNet test within the very center where we were taking Delilah for endocrinologist. It was she who called and our relationship was fairly new. I remember she said, "You are showing some autoimmune antibodies that we have recently begun to be able to identify and you have two out of the four. What we're going to say to you is that you have about a 50% chance of developing type one diabetes." Remember this is close to 10 years ago and we were still using that word juvenile diabetes.
It was a general understanding least on my behalf that type one struck children. I thought, "Okay, I have a 50% chance of developing type one but obviously that coin flipped and I ended up on the right side of it. I didn't develop type one so I'm good. If there is anything that I can do to help identify further causes for the good of science, I'm all yours. I'll do whatever you ask." I really did not have any part of me that thought I would actually be diagnosed with type one diabetes at that point. I thought I was a really interesting medical case that they would use to discover more.
Craig: They didn't say or maybe you just didn't hear it or want to hear it that it was you could still get this.
Anastasia: I think they were pretty clear that I could still get this but I just didn't have any part of me that believed this could be a path that my life would take. That we would both get this rare autoimmune disease within months of each other and that by the way, I've lived a long healthy life without ever having any symptoms or thoughts of this disease.
Craig: From that phone call when they said you have a 50/50 chance of getting type one, how long until you started to display symptoms yourself?
Anastasia: It was a very unusual way to be diagnosed. It's so hard to explain to other people. So many people were like, "Oh my gosh, you've been living with type one for your whole life and you didn't even know it."
Craig: You were almost diagnosed before you had it?
Anastasia: Yes, I was diagnosed before I had it. That is precisely true. What happened was they asked me to come in every six weeks and I would have one of those God-forsaken, hideous, I'll probably never have to have one glucose tolerance tests which I vaguely had recalled from pregnancy where you drink a disgusting sugar liquid. Then I sat there with an IV. They had to do two hours of blood sugar every few minutes it was being collected, however that worked. I would just go into a certain room and everyone was friendly. I'm sitting there thinking what a good person I am for moving science forward and giving this information.
I really wasn't thinking the fifth or sixth time I have this my blood sugar was going to go over 200 which in its own right is a diagnosis of type one diabetes. With that knowledge that the moment my blood sugar went above 200, I was cooked.
Craig: [laughs] Then how did you react?
Anastasia: Denial was a very big part of my reaction. I hadn't told anybody about this obviously except for my husband and my parents and my brother. Delilah was five and we always wanted her to just be loud and proud and this is how this is, so this is what you got to do. If I come to your house for a playdate you have to do this walk with us. It became a big part of our family's identity. In a strange way, I almost felt embarrassed. It just seems so improbable. Embarrassed isn't the right word but it was like, "By the way everybody, I have it too." In the strangest way diabetes was her thing, not mine. It was her thing. It's team Delilah not team Delilah and her mom.
Craig: Did you feel like you were stealing her spotlight?
Anastasia: It's just too weird of a thing to say. It's not like I'm putting it on my child it was her spotlight but it was. It remains actually. It was her thing. I still, as I'm telling you this story, I'm like, "I can't believe that that happened. What is going on?" It was just too improbable and strange and again just hard to explain, exhausting to explain. Like, "I've gone through this medical test." It doesn't really look like her diabetes yet because when I first was diagnosed the first thing I did was say, "I'm not taking insulin so I'm going to have to figure this out."
Obviously that did not last long but I thought if I just don't eat a single gram of carbohydrate ever again, [laughs] how long could I make this last? The answer was not very long but also I was still making plenty of insulin. I have always been interested in nutrition and a healthy eater so I was eating what looked to be a healthy diet and my blood sugar only went above 200 with that disgusting sugar solution. I was making a lot of insulin. When I finally broke down after trying the no-carb diet, I was taking two units of Lantus, the long-acting insulin once a day and that was all I needed.
As the endocrinologist said, "This will break down over time and within a year or so you'll probably be at a full replacement dose. You won't be making any more insulin." Gosh darn it, they were right.
Craig: Now at this point, had you told Delilah yet?
Anastasia: That's a really good question. No, I didn't. I didn't tell her and I didn't tell my son and I barely told my parents. Obviously my husband knew. It took me another year to tell my kids. I was taking shots like I'm doing heroin or something, hiding needles. [laughs]
Craig: In a house where it's normal to take shots of insulin.
Anastasia: I know. In hindsight, I have said pretty much everything I can put my finger on. I personally was in denial. I was saying that I'm not going to take insulin. I'm just going to control this type one diabetes by my diet. I knew better.
Craig: Because you were doing it with the Delilah.
Anastasia: Yes, exactly. I have lived at every minute of every day for 10 years. At that time when it was me, I just as in all things as a mother 99 with many 9% of my attention and my thought and my care, to diabetes, blood sugar control was for my child, and the .0001 was for me like, "I better take that two units of Lantus before I go to bed." My denial was pretty deep and wide.
Craig: Were you worried at all that by focusing on your type one, you would spend less time focusing on Delilah?
Anastasia: I think that must have been part of it. I think there was an element of stealing the thunder in some way that I just didn't know how she would feel about it. I have another child, and I didn't want him to think we're dropping like flies, you're next. I just didn't want it to feel like this was them. It felt like, "Is this a contagious?" That like, "What is in our water? How did that happen?" Remember, they were very young. Again, we were very much-- She went to Washington, and we spoke at the Children's Congress, and she met President Obama, and then we wrote a little book about it.
We have been like I said, loud and proud, and this is Delilah thing, and honestly, I just felt almost embarrassed, like, "I have it too on the side." Then, of course, everyone in the world says, "Oh, my God, she got it from you." Which, whatever that means. I don't like the sound of it, and I didn't want to hear that either from people who I wanted to love.
Craig: It's just weird, because I've met many families, where a parent and a child both have type one, but usually, the parent has it first, and they've had it for a while.
Anastasia: Of course. That's why you see what I mean? There's just many layers of explanation. By the way, if I had a good answer, it wouldn't be so hard to explain, but there is no answer, no one has yet to be able to give me one. It's just one of that, there's enough confusion and misunderstanding, as it is about type one, then to have added, and by the way, I have it too, but I didn't live with it for 40 years, and that it just felt like a little bit too much. Anyway, ultimately, I came out of the closet, in a letter.
Every year we do the one walk, the DRF walk, we do the one in New York, over the Brooklyn Bridge, we've done it since she was five, and only a few months into diagnosis, and in about a month before the event, I send out my annual note, please click on the link, and within that, with a little explanation and pictures from the year before, and within that note, maybe I guess it was about seven, six or seven years ago, I revealed my own diagnosis.
Which was a good way to do it because at least I just got the information out there, and if they read it, then I got out as much as I could, cutting short some of those questions that are hard to answer or frustrating to hear. That worked well. I think that was a very good fundraising year for us. By the way.
Craig: Do you remember how you revealed that you'd been diagnosed with type one as well?
Anastasia: Well, I thought hard about what how I would write it. I just said, "In a strange twist in our family, it's hard to believe. I also was diagnosed with type one over this past year." I offered an explanation of how that happened, and just left it at that.
Craig: Can you tell me the story of when you finally told Delilah that you had type one as well?
Anastasia: Yes. The four of us were sitting at the breakfast table on a Saturday, and I just came out with it. It was right on the tip of my tongue for a while. At that point, I knew that I had to say it. We were all together, and my son made a really sad face and got up from his chair and put his arms around me, and Delilah put up her arms and a victory salute and said, "Yay, mom is my diabetes sister. Whoo." She made it easy on me.
Craig: She didn't feel like you were stealing her thunder?
Anastasia: Not at all. I'd be interested to talk to her about it now. 10 years later, that since she's had it, but if she ever had that feeling, but no, I never got that feeling. She just took it in stride. If you think back to things that happened to you when you were six or seven or eight years old in life, what the grown-ups say, and you just start to take stuff for what it is. She obviously knew that it wasn't something I brought on myself or wanted to have. She just was so accepting, it actually was a great, it couldn't have been a better reaction. It was not one that I had anticipated on any level, and I thought about this a lot.
From then forward, she would say, sometimes, "Mama, are you low? You seem grumpy? Or can I get you that? Or can I help you with this?" In many ways, it has been bonding for us because I can honestly say I know how hideous it feels to be low. Go ahead and sit there, and I won't talk to you until you talk to me first.
Craig: You can relate in a way that other parents with kids with type one who don't have type one themselves can't really get.
Anastasia: I can, yes, no question about it. I get it.
Craig: Was there a point after this where almost Delilah was the one teaching you things that she knew because, at this point, she's somewhat of an expert maybe more than you having lived with it?
Anastasia: Definitely, she would say, "Mom, if you're low, you can't have half the juice box, you have to have the whole Elmo juice box. Let me watch you finish it." She definitely had some suggestions, and to this day, she still has some, and we have an extra eye looking out for each other on a different level than anyone else could ever understand.
Craig: Do you think she spends time worrying about you?
Anastasia: No, I hope not. I don't think so. Not at this stage, again, in her life. I think parents seem to be invincible. There was one time that I accidentally took, I think I was at 14 units of Lantus. At that time. This was a few years ago, and I accidentally took 14 units of Novolog, which, in the course of a day, at that time, I don't think I had ever taken any more than two units in one day. That stunk, and she came and sat at the kitchen table with me, and sat there with me while I ate half a jar of honey, and then, of course, went to 8,000, but she was there for me.
Craig: Do you think you both having type one has changed your relationship?
Anastasia: I suppose it has, just because of what I just said, I suppose it has. She's not alone with type one. I have tried so hard to be a good example for her in terms of how I care for myself, and in terms of how I feed our family. Actually, she has been a good example for me in that she never complains about having type one. That stance was inspiration for me, and it's something that I actively have to think about. It's not natural for me, because I do want to complain, but I decided I will not complain about this if my child who has been saddled with this from the age of five, is not complaining about this.
I really absolutely took her lead on that, and I learned from her on that one. She will complain that she got a smaller piece of cake or whatever. She will complain in life in general, but this seems to be an incredibly strong conviction inside her that I'm not sure it's conscious. I don't think it is she was so young, but she just has accepted that this is how this goes in this one area, and she's going to get on with it.
I also don't spend time worrying and thinking about complications or limitations. I just don't. I think sometimes we make it look too easy because it's my deliberate intention to be positive and just get on with it and present a happy face and I have a happy face. I have an amazing life and an amazing daughter and we're so blessed and lucky, but this is constant and it is life threatening. We both look to be the healthiest people in the world but it doesn't mean that I don't have needles and an emergency shot and an extra pump and insulin and various forms of sugar and everything in the kitchen sink in my purse near me at all times.
It doesn't mean that a significant percentage of my brain is filled with not just mine but my daughter's blood sugar concerns at all times. It can look easy but it's not easy.
Craig: When you told her you had type one and she said that your are diabetes sisters now, do you still feel that way? Or do you feel that way?
Anastasia: I do. It's just such a deep part of our language in our everyday life. Do we like think about it and define it a lot and discuss our shared experience? Not so much but I get birthday cards and Mother's Day cards. She has written some beautiful heartfelt thoughts that don't necessarily overtly come across in day to day interaction of like, "Hurry up and get in the car." She definitely has an awareness and an appreciation of our connection and of our efforts toward each other to keep each other good and healthy. Yes, it's there.
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I'm Craig Stubing and this is Beta Cell.