Beta Cell #002: Amanda Bar Transcript
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Craig: This is Beta Cell, a show about people living with Type one diabetes. I’m Craig Stubing.
Amanda: In a weird way, diabetes has been a blessing in disguise. I was a kid that was always on top of things very responsible. I took care of what I needed to do. I didn't want to get involved with drinking or drugs or cigarettes because I was afraid of what it would do to my body, I had to know how did I feel. In doing that, I stayed a pretty good kid. Even though you're dealing with something that you cannot change, it's not going to go away. You find the good in it and you know that at least I can manage it. If I can manage it, I'll be okay and that's just the way I've lived my whole life.
Craig: Other ways that you feel like Type one diabetes has improved your life?
Amanda: I think it's about being strong. I could say, "Oh, man, this sucks," [chuckles] and moments that you do feel that but for the most part, it's like, thank God, I have something that I can take care of, and that I can deal with, and that nobody would know unless I tell them, because nobody knows. I mean, I can go out down the street and other than having my purse, it's humongous with all the things I need, nobody really knows.
Now I'm very thankful for the life I have and how fun will it be when we can say finally we have a cure. I think it was a learning experience through all of it and just had an interesting road to take.
Craig: Amanda was diagnosed with Type one diabetes during Christmas of 1984 when she was just two years old. While many of us can look back to before we were diagnosed, and see how having Type one has changed our lives, Amanda can't. She doesn't remember a life without testing her blood sugar, counting carbs, or taking injections. Despite having to manage this disease 24/7 for 31 years to keep herself alive, she's found a way to stay positive. She's 33 now, married and living in Los Angeles with her £50 black lab diabetic alert dog named Sugar Bar. Is there a moment that like your first memory of having Type one?
Amanda: I remember I was really low and my mom wouldn't listen to me. I actually cut the phone cord that she was talking on because I needed something-- [laughs] at least something to eat.
Craig: It's like a pair of scissors?
Amanda: Yes. I just cut it. That was probably my first real memory of something I needed to have, sugar or food and she wasn't paying attention. [laughs]
Craig: It didn't work?
Craig: You've only have memories of having Type one.
Craig: Was there a point in your life where you were jealous of people who didn't have Type one?
Amanda: Only when it came to food. [chuckles] My blood sugar was high and you couldn't grab that piece of cake that looks so amazing, because you knew that if you did your blood sugar just go even worse. Now I'm going to take insulin, and either I need to wait it out or I can do some light exercise to try to bring it down. Nobody sees those extra things you do to help your blood sugar come down.
I work out a lot to help manage it but who wants to get up at 2:00 AM in the morning and get on an elliptical machine for an hour after taking insulin to bring your blood sugar down? I mean, most people don't even think about that being a part of life.
Craig: Do you do that?
Craig: How often do you do that?
Amanda: [laughs] Very too much. I would much rather take less insulin and do a little bit more exercise. I've been up many times in the night walking or doing something to help bring it down and it's inconvenient, I think but you say okay, how can I do it? I'll either get a book and I'll read or work on my computer. It looks silly but, hey, I'm living life and I'm getting to do what I need to do and making it work.
Craig: Did you know anyone else with Type one diabetes when you were growing up?
Amanda: Absolutely not. It's interesting. I traveled all over the United States as a kid. My stepfather had a job that took us from New Jersey to Nevada and we moved many many times. I don't recall one kid having Type one diabetes, anywhere that I went.
Craig: Did you feel really alone?
Amanda: Looking back, I don't really feel like I felt alone. Just it would have been nice to know somebody else but then again, I had opportunities to go to like the diabetic camps and I don't know why as a kid, I said, no. I think I wanted to be like everybody else and so I didn't go. Now looking back, I wish I would have gone and met some kids that were like me, but I think I avoided it for some reason.
Craig: Do you think you were afraid of feeling different?
Amanda: Maybe and almost more afraid of seeing other people like me, because at that age I didn't know anything different other than the life I lived and I knew it was different. I think when I really noticed it, it was when I was playing basketball and I remember being in the high school locker room and they're like, "What are you doing?" As I'm giving myself a shot and I said, "My blood sugar is high. I have got to take something."
Then I said this is the time. Everybody's got to know and then I started opening up. I think as a kid in elementary, I didn't tell anybody and I just got pulled out of class a few times but as a high school student, everybody should know because God forbid if something happens, somebody can take care of me or help me.
Craig: What was college like with Type one?
Amanda: I think that's when you really see that you're in charge of your life. That's when I woke up and said, if I don't take care of myself nobody else is going to. My mom's not here. My dad's not here. What am I going to do? I think that was very empowering time. I really got to see that I could take care of myself too. By the way, I didn't have to have somebody asking me, did I check myself? No. I'm checking for myself. I'm taking that initiative. I was about an hour away from home and I did it on purpose. I wanted far enough away, but close enough that [chuckles] God forbid if something happened, I can make a call.
Craig: Were your friends really understanding? Did you have to explain a lot to them?
Amanda: In college, I had a pretty close-knit of friends for almost my whole entire period of time. Actually my senior year of college, I played Polo. Played for the college team. We'd go down and do Polo matches, and this is horseback Polo, and you sit there and go, okay, a Type one riding a horse doing all this. It just was a part of life. They knew that I was going to have to bring everything I needed and if God forbid, my blood sugar dropped and I felt weird, I'd have to get off and let somebody else get in for me when we were playing and my friends were always really understanding.
I don't know what other people interactions are with people but I think most of the time, they're pretty open and willing to learn to be able to either be there for you or at least understand so they can give you the space if it's needed or whatnot. The only time people don't understand is when we get moody and I think that really happens to be those that are really close to you that you interact with all the time like my poor husband. He deals with it all the time. I don't ever want use a diabetic card and say, sorry. It's my diabetes because I never want that to be an excuse but yes, we can get a little cranky or irritable and sometimes you're like, "That's not me," and they go, "Yes, I know. I know."
Craig: Will you act moody and he say, "Oh, I think your blood sugar's high?"
Amanda: [laughs] Yes.
Craig: Does that make you angrier?
Amanda: [laughs] A little bit. Like, "Do you need to check yourself?" That's the one I don't like. "Do you need to check yourself?" [chuckles] "Yes, probably." [laughs]
Craig: After the break, we talk about Amanda's life after college.
Craig: After our first episode, I received a lot of really encouraging and supportive messages from listeners. I just want to thank everyone who reached out for your kind words. The fact that so many of you were moved by Doris's story means we're on the right track. Your enthusiasm makes all the hard work worth it. To keep the show going, we need your stories too. Everyone's life is a little different and the more stories we can share, the better picture we'll all have of what life with Type one is really like. If you'd like to share your story, please email me at firstname.lastname@example.org.
Craig: Did you ever have issues with sensing your lows?
Amanda: When I was young, I felt it. The tingling in the fingers, the tingling in the mouth. Your tongue goes a little numb. I've gone low so many times that I don't feel it and didn't really think it was too much of an issue until a few years ago when I was driving and I passed out driving. Thank God somehow I drove for two miles unconscious, didn't hit anything or a person or a car. I don't know how. I remember going, "I'm going to pass out."
This is after two miles and I pull over, I saw candy and I started eating the candy and I woke up and I was at another location. It scared me and I said, "Okay, something's got to change." I ended up investing in a diabetic alert dog and said, "Maybe the not feeling of it is more dangerous than I ever thought before." I've just taken the action to keep track of myself so that doesn't happen again.
Craig: Were there any other times when you've blacked out?
Amanda: Yes, a few other times, just not waking up in the night. Mind you, I've had diabetes 30 years and only have two times where I've really blacked out in daytime activity. I find a blessing. The other time I was sick, and I was at school, and I was teaching, they knew I was a diabetic. I had my jelly beans on me all the time and they told me to check myself and I told them one day I got to go upstairs.
I went upstairs and I was so low that I remember thinking, "I just need to get to the office and I passed out and I fell down and I actually did a faceplant into the sidewalk." I had woken up and they had come to get me and I was like, "What happened?" Out of that, thank God I was okay nothing bad happened, and there were people around. Thank God.
It's always a time to you think about if there's somebody around I know I'll be okay. It's just when you're by yourself. That it's kind of scary.
Craig: How is your day to day life different, now that you have an alert dog?
Amanda: I feel like I get more questions about diabetes now ever than before with the dog. People all want to know, what is it? How does it work? Is the dog diabetic? I'm like, "No, I'm a type one diabetic," and a lot of people don't understand. It's all almost like heighten the issue of me having a disease that people don't see me as having a sickness at all. I look just like everybody else. I was told by one guy that that was one of the most ridiculous things he had ever heard, that I had a diabetic alert dog, that I was trying to get into a restaurant with.
Just because I look like I'm normal doesn't mean that I shouldn't have a service dog. I think you come up against a lot of things with that.
Craig: Do you get a lot of negative reactions having a service dog?
Amanda: Most of the time it's positive, except for those places where they think you're trying to pull their leg and it's just a fake service dog. People have abused the service dog Brown, and so because of that, we usually get a stink guy. If they don't believe it's true, I have the card that shows everything and I usually openly tell people and I usually always have this vest on because it just makes life easier. A lot of people would take you cool. They're excited to hear that there are dogs that can actually help diabetics. It's a toss up, it depends on the person you're talking to.
Craig: Does it sometimes become a burden?
Amanda: To be honest? Yes, of course. You sit there and think about if you want to go to somebody's house, you have to say, "By the way, is it okay that I bring a 50 pound Labrador with me? I have a service dog and he doesn't ever stay at home." That has posed some problems for some people. You take it as it is, I love to dance. It's not so easy to go salsa dance or ballroom dance with the dog. Where am I going to put him, is he going to stay laying down? We have a lot of things to work on, but I think that in the whole scheme of life, you make things work.
Whatever that is. Having him I've just made arrangements in some way, shape or form to make things work the way I want. The one thing that was cool and inspired me with having him was I ran the LA marathon this year, and never before did everything I could run 26 miles in one shot with Type One Diabetes. Being able to do that in six hours was phenomenal. He trained with me every day, the only day he didn't go is the day of the marathon because it was too hot.
I would have taken him. I was hoping we would go together because I think it would have been really cool to have him open the door for Type One Diabetes to be seen in a way that it's like, we're powerful, we're going, we're moving.
Craig: You want to have children?
Craig: Are you worried about having children with Type One Diabetes?
Amanda: Of course, when I went on the GDPR trip, lobbying in Washington there was many type ones there and I talked to a few of the women that had kids, and asked them how did it go? What did they go through? Was it, did they have any complications? Almost all of them said, no complications. It was tough. They monitored it, this and the other but
I still have this like, I don't know this fear inside of me that I don't want anything bad to happen to the baby nor to me during the process.
Actually I decided to go through the surrogacy route. I did IVF and I have my babies to be waiting for me and looking for this surrogacy pie in the next few years and just so thankful that today with science and things that we have that we're able to do something like that because before I pretty much thought I wasn't going to have kids or I would adopt. Now to think I could actually see my own children come about in a different ways is exciting. I look forward to that.
Craig: Something like 90% of people with type one are in families with no genetic history. Are you concerned at all about your kids getting type one?
Amanda: Of course and I think anybody that has a type one in the family would think what would happen if I had a kid? I know they say it's going to skip a generation, even though that's not 100%. It's a toss up. You have to go by faith and if they have it then okay, we'll deal with it. Obviously, I wouldn't want anybody to have to go through it as well.
That's a risky take, I guess.
Craig: Was there ever a point where you didn't think you want to have kids because you were worried about passing it along?
Amanda: Of course. I think that my husband was probably the one that really opened my eyes to me actually having my own instead of just adopting because I thought that one, I couldn't carry. Two, there was no way I don't want my kids to have it and he said, "But I really would like to have kids in all the sense of family that it's really you and you're special other half having your child is a different experience than having an adopted child even though that I still would like that. I would probably have the kids and then adopt the kid because that's really where my heart it's at.
Craig: What's the best piece of advice anyone's ever given you about living with Type One Diabetes?
Amanda: My dad because in some weird way shape or form he felt like it was his fault, but when I wanted to go to London and study abroad, and he had first said no and I said but why and he was just worried about me being overseas and when he finally called and said, "No, how to take care of yourself, you'll be fine, go have fun." That was life changing for me, that trip really beyond college, going abroad and being by yourself abroad and having just enough supplies they get you through and I apply two months more with me just in case. "That go have fun, you'll be fine." was liberating.
Craig: Beta Cells is produced, recorded and edited by me, Craig Stubing, and our theme music is by Purple Glitter. I'm on Twitter at Craig Stubing and the show is on Twitter and Facebook at Beta Cell podcast. You can subscribe to Beta Cell on iTunes and Stitcher to get new episodes delivered automatically to you. If you haven't subscribed to our newsletter, you can do that at betacellpodcast.com. You'll get an email every time there's a new episode along with new stories and thoughts from me.
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I'm Craig Stubing, and this is Beta Cell.