Beta Cell #001: Doris Gilbert Transcript

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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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Doris: My name is Doris Gilbert.

Craig: When was the first time you heard about type 1 diabetes?

Doris: Oh my goodness. I think way back in about 1974, when my daughter was not feeling well. Lori was drinking a whole lot. She was six years old. We were on a vacation in Yosemite, and wasn't home, so that wasn't-- Maybe she was scared of bears or something. That didn't surprise us too much. We were camping. Then we came across the desert. It was hot, everybody was drinking a lot. When she started school, and it was a new school, she had stomach aches. She was nervous, probably. It's a new school with new kids. Then she started feeling ill, and she just wasn't right, and so we took her to the doctor. Her blood sugar was about 800 at that time.

Craig: What were those first few days like?

Doris: She couldn't leave the hospital until we learned to give her shots. She had been given them, I think, in the leg. I thought, "She has to learn to have them in the arms too." She had this little skinny arm. She was just screaming. It was very tough, but I had to. People say, "I could never give myself shots." What choice do you have? Either you do-- In those days, it wasn't quite as tiny as the needle is now. Oh my goodness, she was so artistic and creative. She loved all the arts.

Craig: Did she go to college?

Doris: She went to Cal Arts, and she had a double major in art and theater, and she was in screenwriting. Her health was fine then, when she graduated, she worked for a while, then she entered the screenwriting Masters Program at UCLA. She was thrilled to get in. They had a lot of applicants, many, many applicants, and only a few were selected. By that time, her health was deteriorating. The semester started, and she was in the hospital. She had to start about a week or two late, and try to catch up, and so on.

She wasn't able to finish her degree. Got so she couldn't work. She couldn't go to school. She couldn't even volunteer because she didn't know that she would be healthy for a day. One of her biggest problems was gastroparesis. That is a situation where there's a paralysis of the GI's tract. So that the insulin is expecting that your food is going to go, travel down and be absorbed into the bloodstream, but it wasn't. It would sit in her stomach, and then she'd vomit a lot. We would be riding in a car and she'd say, "Get over to the side." We might not even be able to get to the side before she'd throw up all over the car. Anyway, that was very, very painful, and very debilitating for her.

I had a physical, and I didn't get the results. I waited and waited, and six weeks later, I called and asked for lab results. Oh my goodness, I saw my blood sugar was 149 or something. That wasn't normal. First thing, I think. I had a good doctor too, but people are human and he, I guess, didn't get to go over it.

Craig: Did you call your doctor and say, "Hey, I think something's wrong"?

Doris: Yes, I did.

Craig: You self-diagnosed diabetes?

Doris: Right. I had a different feeling. I didn't feel a sense of doom because I didn't think my situation was going to be like Lori's at all. I thought I'd just be a typical person with type 2 diabetes, [chuckles] but then it turned out to be type 1.

Craig: How did it feel to be diagnosed with type 1, while your daughter was having so many issues with it?

Doris: I have to say, I had a sense of satisfaction, in a way, that now I could understand Lori better when she had low blood sugar. For example, when it's time to do dishes, somehow she's having low blood sugar. "Yes, yes, Lori, sure." In other words, she wasn't getting validation for how she felt. She did use it, I think, but some of the time, she didn't have low blood sugar, was feeling lousy, and she's getting, "Yes, yes, come on, get the job done." I felt really wonderful that I could share that with her, that now I knew what she was going through, and what it's like to be shined on when you're really feeling lousy.

I felt that brought us closer. We were pretty close anyway, but that gave us a special connection that we didn't have before. There's different ways to look at things. Her blood sugars were very-- She was pretty volatile, and they pretty much were all over the place. It was hard too. Very hard. She had a lot of trouble when she was 12, and she was in the hospital quite a bit with DKA. Then she was fine for a number of years, until the last five years of her life, her health deteriorated greatly. She died when she was 27.

We knew that we would outlive her. It was a matter of whether it be any time or 10 years, God forbid, if she was that unhealthy, and suffering so much for 10 years. We knew that we would outlive her.

Craig: Did you ever have a conversation about that?

Doris: I don't think so. No, I don't think we ever said, "No, Lori, I know that you'll die before us."

Craig: Do you think she knew?

Doris: Yes. She was too sick not to. We used to give her a birthday card, we'd say, "We're sure next year that things will be better." They weren't. Each year they weren't. Finally, we said, "We hope things will be better." The last year of her life, she was in the hospital for months, and she spent Christmas there, and so forth. She had pneumonia. She had been given insulin because her blood sugar was high, and it was going down, and she was given another 10 units. Then it got really low.

It's hard to know exactly what she died of, but she was in the hospital, then she was sent to the ICU, and her heart stopped, and they couldn't revive her. That was devastating. In a way, she had suffered so much, so she was over her suffering.

Craig: After the break, we'll hear how Doris lives with diabetes today, without letting it slow her down.

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Craig: Thanks for listening to the first episode of Beta Cell. Each week we'll feature the story of someone living with type 1 diabetes, whether they were just diagnosed or have been living with it for as long as they can remember. The only way we can do this is with your stories. If you'd like to share it, please email me at craig@betacellpodcast.com.

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Doris: When Lori was 12, and puberty and having all these problems, I thought, "Diabetes affects every organ of the body, and I'd like to understand more." I took a physiology course at West LA College. It was wonderful. I had a fascinating teacher. About 12, 15 years later, after I had diabetes, and before Lori died, I thought, "I've forgotten a lot. I ought to go back and review now I have diabetes." I went again. Then I thought, "It would be interesting to take anatomy, but I wonder if I could learn all that. Memorize all those things." That's different from physiology, which is understanding. Anatomy is memorizing. I did. I took it for credit.

At that time I was about 58, I was thinking, "I've always wanted to be a nurse. I wonder if I could do that." I have started nursing school at 60, and started working at, I guess, 62, 63. It was a tough job, too. This was a hospital that had very seriously ill people with complex medical problems on dialysis, on ventilators. It was a big adventure. It was an adventure going to nursing school at that age. It was an adventure to be a nurse. I came into my own, in some ways, when I became single at age 63. I climbed Mount Whitney '04. That had always been a lifetime goal. That's 14,500 feet. That's the highest mountain in the contiguous United States.

I went dog mushing in Alaska when I was 70, for five days. I drove my own team. I went by myself because everybody thought it would be too cold, "No, I don't want to go with you, it's too cold." In the morning, you get going. You're out there on the tundra, then we stopped for a snack. The snack is really for the dogs. You're trying to manage the dogs. You've got to think about your diabetes, but you can never forget it entirely. It has to be in the back of your mind all the time. If you're going low, you can't just go on anyway. You've got to get a snack. You've got to get some sugar.

Let's see. What else? I've been swimming for many, many years. For 32 years, up until I was age 72, I would swim in a two mile ocean race, from Hermosa Beach pier to Manhattan Beach pier. That was always enjoyable. It got pretty complicated. I'd have to take off my pump, when I wore the pump, I'd have to make sure my blood sugar was high enough that I wasn't going to have a low blood sugar in the ocean. I was in there about two and a half, three hours. The swim, talking about me, as I got older, about an hour and a half. First, I used to carry Skittles in my bathing suit because I had a low blood sugar. Then I got a glucose gel that was-- I never had to use it.

Craig: What are some of the challenges for you doing all these activities?

Doris: When you're backpacking, you have to remember to take a meter, but if that meter fails, I have another meter. I take along another meter. You take along the insulin, but if the bottle of insulin should drop and break, you have to have a spare. So, you take a spare bottle of insulin, too. You have plenty of strips, blood-testing strips. You have to take lots and lots of pump-tubing in case your pump site fails, you need extra. You'd have to take syringes, in case the pump fails. It's a terrible burden. Life is complicated and busy.

There is so many things to occupy your mind, but you have to take care of this, or you're going to have the dreaded complications. You have the fear on the one hand, of not waking up at night, or driving and having an accident because it goes down suddenly. On the other hand, you have the fear of if you don't get good results, and if you're not doing the right thing, and if it isn't working out well, you're going to have the complications. The terrible complications like kidney problems, and blindness, and wounds that won't heal. Then, the guilt, too. You feel guilt if you're not perfect, if you're human. [laughs]

You feel, "I should be doing better." I guess you can give your life over to singularly watching your diabetes. I think some people maybe do, but I have a life to live. I have a lot of living to do, so I try and do the best I can.

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Craig: Beta Cell is produced, recorded, and edited by me, Craig Stubing. Our theme music is by Purple Glitter. I'm on Twitter, @craigstubing, the show is @betacellpodcast. You can subscribe to our newsletter by going to our website, betacellpodcast.com. Every week, I'll send out a list of news about type 1 diabetes that I think you'll find interesting. I'll also include comments about our episodes from listeners. Send your thoughts to Craig at betacellpodcast.com. If you like Beta Cell, please leave a review on iTunes because it really helps other people find the show.

I'm Craig Stubing, and this is Beta Cell.