Beta Cell #006: Jim Natal Transcript

Full Episode

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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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One of the things you hear a lot from people who don't have type 1 diabetes, is how they wouldn't be able to prick their finger four or five times a day. They just don't like needles. Then they say they want to try getting their blood sugar tested and they scream nonstop while you're holding the needle. What they don't realize is that the needles are the easy part; they are straightforward, the needle goes in, blood comes out. If only the rest of type 1 was that easy, we wouldn't have any issues. But so much of managing blood sugars is invisible, not only to other people but to us too.

Do you really know how many carbs are in that bowl of pasta? Are you working out harder at the gym today than you were yesterday? How do you measure how stressed you are? Is the spot you injected insulin absorbing it correctly or did you just miscalculate how much insulin to take? All of these questions are going through our minds 24 hours a day, especially when we wake up in the middle of the night trying to figure out what's wrong and how to fix it. It sucks, but there isn't anything you can do about it. You need to keep asking these questions to keep your blood sugars under control.

Jim was diagnosed with type 1 diabetes in 1978 when he was 30 years old. He's at 38 years of asking the same questions every single day, and he's learned that no matter what you do, you can't get it right every time.

Craig: Was that hard, transitioning to type 1 at that point in your life?

Jim: Well, in a way, the diagnosis was a relief because I finally figured out what was going on with my body. It was a really, really bad time in my life: my marital relationship was collapsing, I was out of work and really struggling. I hadn't been in Los Angeles for all that long, maybe two years at that time, so it was all kind of new, I didn't know that many people here. The one thing I did do was I was very active. I ran a lot. I now know that probably my physical activity kept my diabetes in check and I didn't know I was doing that.

Finally, what happened was I lost about 40 pounds. I thought maybe it was because I was exercising, running too much, or whatever. Then I realized that I could be eating anything, I could sit down eat a pint of ice cream, and I wouldn't gain weight. I could eat a box of cookies, I could eat pie, you name it, all the stuff I loved, but I never gained weight, I kept losing weight. So I knew something was wrong, but I got referred to just an absolutely wonderful doctor. He did a glucose tolerance test and he didn't really even have to finish. My blood sugar was eight or nine hundred.

He said, "We don't even have to go further, you're diabetic." Very quickly, within a matter of, I think it's almost hours, not days, I was sitting in with a diabetic educator, a nurse who is still to my mind, she's this angel figure. She was wonderful, and she was just straightforward about it. She just said, "Look, this is what you got, here's how you inject," and gave me an orange and I was shooting up into oranges and learning how to do it and then doing myself. She said, "Look, you've got it. You have to learn to live with it, you have to learn to manage it."

It was just no-nonsense, even though she was just wonderful, but it was totally steely under it that, you've got it, you've got to learn to deal with it, and it was a shock. That, on top of all the other things that were going on in my life that I mentioned earlier, I just walked out of there in a daze. My marriage did collapse. My wife was not- That was like the last straw for her at that time. She just couldn't deal with that.

Craig: A lot of people don't realize the effect that type 1 can have on relationships with people. Did you notice any changes with your relationships with your friends and family besides your wife?

Jim: No, I didn't even know that many people. Again, I was fairly new to Los Angeles so I only knew a few people. I didn't really have that much of a change with the people that I knew. Honestly, throughout my life, everybody knows somebody who's diabetic. There's a lot that people don't know, just even the basics, but it's not something strange. I've never felt like I'm treated any differently, partly because of Barbara, the diabetic educator who I started with. She basically said, "Look. You can do anything you want to do. You just have to account for it diabetically," and that's really the way I was trained.

When you go out, everybody has to kind of accommodate you a little bit, but I don't feel odd about that. Nowadays, and especially in Los Angeles, everybody's got something. Anybody who throws a dinner party in Los Angeles, you go out of your mind, because this person doesn't eat meat, this person doesn't eat fish, this person is gluten-free, this person's a vegan, whatever. So I don't feel odd about it. Diabetes is just another thing and I can eat anything as long as I accommodate it. I can do pretty much anything.

In my early days, just to talk further about that, I was very active outdoors. I remember right after I was diagnosed, I guessed I had to prove it to myself and I still was very, very unfamiliar with the whole process, but I went with a couple of friends, and we went backpacking in the Sierras. That was a big mistake, because of my blood sugars, because of the altitude, and the exercise, the exertion, and the weird diet. My blood sugars were just out of control, and I eventually had to walk out. I just couldn't-- We were up in this lake area and I just had to walk out and go home and let those guys stay.

I took a bus back to LA from Bishop, and it was fine, but I realized that there are certain things that I just wasn't ready for, yet. I can exercise, I played tennis for years and years and years and it's not the diabetes that stopped me from playing tennis, it's my body, it's other injuries. I feel I can do anything.

Craig: So you think that the idea that you can do anything you want to do as long as you put the effort into it, that impacted how you look at type 1 diabetes, the positive way some other people might look at it?

Jim: Maybe so. I realized that I'm somehow challenged in a lot of things I might want to do. There are certain things that I don't, I don't even consider doing any more like scuba diving, because if I get an insulin reaction at 40 feet down or 50 feet down, and I have to decompress, I'm dead meat. It's just not going to be very comfortable, something bad is going to happen. But in terms of hiking or international traveling, you just deal with that. It's more of a pain, you have to carry all your equipment through customs, but I really haven't had an issue with that.

Craig: Was there a lot of things you had to relearn with eating, with exercise, with life after you were diagnosed?

Jim: Yes, I did. I had to really learn about exercise again. I still pretty much walk and lift weights. I run on a very regular basis, but there are some days that my blood sugar is just running low and I'm all set to go out for a walk and I just decide not to go because I just don't want to sit here before I go out, and eat a lot of stuff or drink juice, and pump my blood sugar up so I can go out for an hour. It's just silly. Then I have to, impossibly, if I don't do enough exercise, then knock the blood sugar back down so I can eat dinner. Then guess again what my insulin dose is going to be.

It complicates things that way and this is what I think people aren't aware of. I think this is maybe the most important thing that people don't understand is that when you're diabetic, everything has to be factored in. Everything in your life is a factor that can affect blood sugar. It's not just food, and it's not just exercise, it's stress, it's illness, it's how tired you are if you haven't been getting any sleep. All of these things that are at a constant balance, but that's part of being diabetic, is you're always aware of the factors that can influence you and what could happen. What do I need to do?

One of the greatest images that I can impart to someone without diabetes trying to understand what it's like having diabetes, is something I read on my last trip to Europe. I was in London and they had a supplement in a major local paper about diabetes. One of the women they interviewed said that the way she envisions her diabetes and living with it is like when you're watching CNN, and there's a constant crawl going across the bottom of the screen with all the stock tickers, headlines, sports scores, all that stuff she said, that's what being diabetic is like.

You're constantly having that crawl telling you, where you're getting the information? What am I going to eat? When did I eat? What did I inject? When am I going to next inject? Where am I going next? Am I going to be away from home for five hours, seven hours, eight hours? All these factors. Am I stressed? Am I tired? Am I going to exercise later? There is this steady stream of information that diabetics have to process that healthy people or non-diabetics don't have to. The other thing is, you're in charge. There's nobody there holding your hand. You're not going in every week to get checked or every three days.

Craig: Or every hour.

Jim: Yes, right. You're it, just as my lovely diabetic educator told me. You've got to learn to manage it and this is it. It's you, and it is, but that's it. You have to learn to balance all these factors and still go out into the world and have a life. Have a good life or you can stay home with the shades drawn and check your CGM every 10 minutes and worry if you go to 110 instead of a hundred. It's a choice.

Craig: Have you ever been overwhelmed by the constant crawl of information?

Jim: Absolutely. There are days when I just say, I'm really sick of this. I'm so tired of dealing with this stuff, but then, what's your choice? I mean, that's just it. I look at myself and go okay, what's your choice. You can stop dealing with it and what will happen then? I get real tired of it, but I've had it for 30 some years so I guess I'm allowed a day every once in a while.

Craig: After the break, Jim explains the difficulty in balancing a healthy lifestyle with a healthy life.

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Craig: Even though I'm the one who hosts and produces Beta Cell, it's really a show about you and for you. If I had to come on every episode and talk about type 1 diabetes for 20 minutes, it'd get pretty boring pretty quick, which is why we want to hear your stories instead. What has your life been like with type 1? How have you managed with your specific circumstances? How have you succeeded and what are you looking to improve? If you don't have type 1, what do you want to know about it? What confuses or interests you? We can't change the conversation about type 1 if we don't know what questions to answer. So send me a message and we'll be in touch.

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Jim: I like to eat, but going to a restaurant is a challenge because I don't know A; what's in everything I'm eating as when I cook it, or I don't know what the portions are going to be. I don't know going into a restaurant, I don't know even what I'm going to eat. Forget what's in it, I don't even know if I'm going to-- Am I going have pizza or am I going to have some exotic Asian dish? I don't know. That all has to be factored in. After having diabetes for so long I know that, you know what, I may get home that night and my blood sugar is going to be 250, 300 because I didn't guess right.

Because it was an Asian restaurant and I know they use a lot of sugar in their dishes and maybe I just didn't factor that enough in. So then I just have to take care of it.

Craig: How long did it take you to accept the fact that if you go out to a restaurant and you come home, your blood sugar is probably not going to be right? Because I think a lot of people, myself included, you always want to be perfect. You know there's a range you're supposed to be in and if you're not in that range, you can feel somewhat guilty like you did something wrong.

Jim: All right. Well, I'm a poet, and one of my favorite poets is an American by the name of William Stafford. He was famous for writing a poem a day. One time in an interview, somebody said, "Well, you write a poem a day, what if it's not up to your standards?" He said, "Well, I lower my standards," and it's kind of the same thing. If I'm not in the range that I want to be in, I expand the range a little bit. Yes, I would prefer to be coming home from a restaurant to nail it and be at like 150 or 160 or even 170 going, yes. I got pretty close that time. I guess about right. But if 250, oh, well, I'll fix it but that's it. I certainly enjoyed the meal and so I'll just have to fix it now. It may take a few hours to get it stabilized again, but if you're under decent control, it's not that hard but it's an issue.

Craig: How much effort do you think you put in on a daily basis for managing on a type 1 diabetes from the moment you wake up till you wake up at three in the morning because your blood sugar's heightened and your Dexcom's vibrating?

Jim: Yes, I get it. Waking up my wife. I could do more. I'm sure I could do more, but at the same time, I decided I'm just not going to be a professional diabetic. I did come across people who are just like fanatic about it and maybe they'll outlive me by 10 years or never get complications or whatever, but I'm just not prepared to do that. I'm willing to do what I need to do and to do it every day all the time. Watch my diet, carb count, check my blood four to five times a day, you know, what my doctors are urging I'm going to be going on the pump just to even further refine my control, which hasn't been bad. I think my range has always been a bit higher than they would like, but it's very steady.

It's hard to argue with that but I'm going to try and get my range down so that's the next step is if my body's changed, what I've been doing till now isn't enough, then now the next step is to go in the pump and just make it happen. I don't want to do it, but I'm going to do it.

Craig: Why did you resist the pump?

Jim: It's just another thing hanging on my body that I don't want. I already have a Dexcom monitor on there. I'm already pricking my finger four or five times a day. Do I want a 32-inch tube hanging out on my side? No. Do I want a semi-heavy pump sitting in my pocket or riding on my belt? No. It's not vanity, it's just the pain.

Craig: It's the lifestyle.

Jim: It's a lifestyle thing, I just don't want it. What do you do when you take a shower? Oh, no, I going to take this off. What do you do if things get amorous? I got to deal with that. I'm going to be sleeping attached to something with a tube. Do I want that? No, of course not. What happens in the middle of the night when I turn over and I'm all tangled up? It's just the way it's going to be. I'll deal with it if that's what it takes to get my blood sugar controlled better and to expand the quality of life at least health-wise.

Craig: I like your phrase, being a professional diabetic. Where do you draw that line? How do you determine what's too much? What's impacting your life and the way you live versus your health?

Jim: That's a good question. I think a lot of health would be a determining factor. If I saw that my health was not good, if I saw that for two weeks in a row my blood sugar's were always above 200, I would know that I need to do something. I'm not stupid about this, but it depends, I think on what you're doing. I mean, I worked in the corporate world for 25 years and went to the office every day and I had a function at a high level and I did even with diabetes. It was not a factor. It was not going to be and I did everything I could do. But did my work, having to be there and do with that, take away a little bit of what I might have invested in diabetes management? Sure, but I had a life too.

I like to do things like to travel, so I do as much as I can do. Could I do more? Absolutely. Will I do more? Yes, I will and with the pump, I'm going to have to.

Craig: Do you think that having type 1 has impacted your poetry?

Jim: I got a good poem out of it. [laughs] Really, I did. I went to a writers conference, a poetry conference up at Squaw Valley. Oh gosh, it was in the late '90s when I first was really seriously writing poetry. I had written poetry all through college and then life got in the way for about 20 years, and it came back to me, I was lucky enough to have it come back. When I was writing seriously, I went to this writer's- to this poetry conference with high-level instructors, including poets like Sharon Olds was there, which is amazing and Robert Hass, before he was a poet laureate, but he was there.

I was working with him and I had been wanting to write a poem about when I was diagnosed, and about diabetes, and I never could have-- Sometimes you just have a subject and you just don't know how to do it so you just don't do it until you're poet enough to do it. You write the poems that you can write, and then you write more when you can write differently or more. So, I wrote this poem and brought it in and there was this-- It's a workshop group, people you don't know from all over the country, and he was there and I brought that poem in and I read it and got comments.

He was sitting, he happened to be sitting next to me and after we went through that discussion, he leaned over to me and he said, "That was really powerful," and he said it in just such a way. That was like the greatest compliment I ever got from a superior poet. Just to know that I had communicated what was going on, and it's not a long poem, it's fairly short, but it got the point across and I did what poets are supposed to do and made it universal so people could see it, people could feel it, people could identify with it.

The name of the poem is Learning To Live With It.

Barbara taught me to give injections
to an orange, thick pop of penetration
through the skin, short smooth glide
into soft tissue under. Slowly, with control,
push down on the plunger, and quick
backward dart toss, remove the syringe.

I practiced in her office, still dazed from
diagnosis, seeing through pinpoint pupils,
eyes after a strobe flash. Stretched like surgical
tubing colorless with tension, I was renamed
after a disease, time now measured in gleaming
needle pricks, insulin units, blood sugar levels.

My wife sobbed in the car parked beneath
the medical building, rusty pipes wrapped and
painted white, strung along the oppressive ceiling.
She cried because we didn’t have much money.
For the money, not for me. In that time of change
there were changes yet to come.

Barbara said I would learn to manage it by myself.
She said I had no choice.

Craig: There's one line that I think really speaks to me. I was renamed after the disease.

Jim: Yes, suddenly I was a diabetic. That's the way I felt. I felt that suddenly I had gained this thing, this other identity that I didn't want but I had it and all the ramifications that came with it, and there were a lot of them. As I said, there were in that time of change, there were changes yet to come and there were but again, I had this angel there who guided me through the time and I don't know what would have happened if I ended up someplace else, but it didn't. So I just say thank you and forever indebted to her wherever she is.

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Craig: Beta Cell is produced, recorded and edited by me, Craig Stubing and our music by Purple Glitter. You can find Beta Cell on Twitter and Facebook at Beta Cell Podcast. We're always interested in hearing your stories. If you have an anecdote you'd like to share, you can record a voicemail on your phone and email it to craig@betacellpodcast.com or leave a voicemail at 844-321-BETA.

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Craig: Jim's poem about his diagnosis, Learning To Live With It, is in his first book, In The Bee Trees, and it's up on our website betacellpodcast.com.

I'm Craig Stubing and this is Beta Cell.