Alisa Weilerstein - T1D, Cellist

[00:00:02] Rob Howe: What's up? What's up? Welcome back to another episode of Diabetics Doing Things. If you're a fan of the classics, we have an interview for you today. One of our listeners, Harrison Wong, thank you so much for the recommendation. Not only the recommendation, but also coordinated all of the logistics behind the scenes for a long time over this interview with Alisa Weilerstein, who is one of the most foremost cellists of our time. Uh, and so if you are a fan of classical music and there are a number of people with diabetes who are extremely high level of classical musicians, and Alisa is one of those. And we talk, we have a really good interview. We had a long conversation about what it's like to be diagnosed with diabetes at a young age, uh, what it's like to prepare and travel for a solo performance in many cases. And, you know, Elisa was very open with like most of her performances are by herself on a stage. And so her particular strategies for getting ready for those performances, you know, take into account travel, they take into account stress, they take into account a long piece of music that she might be playing over a number of hours and how she keeps her blood sugars in range so that she can be the best version of herself she can be on stage. I thought was super relatable. Uh, and we also talk about, um, something in common that Alisa and I have in common. It's like very few things like number one is diabetes, but number two, uh, I used to play a guitar shocker, uh, uh, a teenage white guy playing guitar. Oh, the, the songs that you wrote on YouTube and stuff. Oh my gosh. Yeah. Yeah. There's some songs on mine on YouTube. Gross, uh, cringe alert. Uh, but, uh, I, I stopped testing my left hand fingers when I, uh, because it would break up my calluses and sometimes cause like a weird hum or buzz when I would play strings. And I asked her on the podcast, uh, if she did that as well. And she does. So she does not test on her, on her string hands. So when she plays cello, she tests on her bow hand only. So that was a really cool kind of thing that like insider baseball, like talking about, you know, diabetes with somebody who, uh, is truly, uh, one of the best at her craft, uh, on this planet earth. So really really exciting stuff she sounds like she's an athlete like preparation planning like gotta make sure you're good also i guess and uh spoiler i'm not a part of this episode but i guess one of my first questions comes to mind like you're playing a really important piece or like you're doing a concert in front of like thousands of people and like you're low now what like that's just something that i guess i'd never even considered for musicians or and even just like for athletes but you know you think about like being sweaty and like how that could affect to your fingers and finger position. And when you're playing music at that level, every note has to be exactly on point and on tone and on rhythm. So, um, you know, it's really a science. And like you said, very similar to some of our high level athletes, uh, who have been on the show as well. So I think a really interesting twist on a really common thing that we talk about, about preparation, taking steps, uh, travel, uh, Alisa also talks about, you know, her parents are both musicians as well, uh, classical musicians. So she grew up in a house where practice and repetition was a consistent part of her life. And so that routine, I think she talks specifically about getting used to with diabetes at a young age, served her really well long-term. So some really good notes in this interview and really thankful for Elisa and her time, obviously with her demanding schedule and as well as like life and family, just very giving of about an hour of her time. So after this word from our sponsors, I'd like to make some time and some space for the great Alicia. So after this word from our sponsors, I give you the great Alisa Weilerstein. What's up guys. I got a very important announcement for you today. Not only is this episode sponsored by type zero health, but type zero is now our official fitness partner of diabetics doing things. And that's exciting for me because if you can hear, I'm actually mixing up some type zero NO booster in my shaker cup right now, because I'm about to go work out like I normally do late in the day. And what I want to tell you first about type zero is that for people with diabetes, you can get the boost and the pump you need to crush your workout without having to worry about spiking your blood sugar because type zeros and NO booster is clean. It's caffeine free. It uses natural ingredients, no artificial flavors or colors, and it doesn't spike your blood sugar, but it gets you the pump you need. It also doesn't have caffeine. So I can have it later in the day. Like I am right now, it's about five 30. I've just gotten through my workday and I'm about to go hit the gym. I use it when I play basketball, when I go on a run, when I hit the weight room, which I've been doing a lot lately. And I've been using it to help me shift into workout mode while I'm at home. I get that shaker cup going, mix it up. I'm using the cherry lime aid flavor right now. You got to check it out. Type zero health.com for more information. If you use typezerohealth.com, use code ROBHOWE. That's my name, Rob Howe. No spaces at checkout and you can get 20% off. TypeZero is a T1D-owned business and you know how I love T1D-owned businesses. Check out episode 132 for my interview with the founder of TypeZero, John Jensen. You can hear his story there. Also, check out TypeZero's clean nitric oxide supplement. I've been taking it for a few weeks now and it has really powered my recovery. Again, no caffeine, just beetroot, pine bark, arginine, and citrulline, which are natural ingredients. It helps me recover, which is a big part of how I implement my training these days. I've got to be able to recover. I take on a lot of mental, non-physical strain. And then with my workout schedule, it's hard for me to recover and bounce back. And this has really helped me. I even left a review on Amazon with a photo of my whoop strap where it shows month over month, how my recovery increased after I introduced the clean nitric oxide supplement. So check that out again, type zero health.com, the official fitness partner of Diabetics Doing Things, and use code ROBHOWE for 20% off at checkout. All right, back to the episode. Okay, well then here we go. Welcome back to another episode of Diabetics Doing Things. We are telling the amazing stories of people with diabetes from all over the world. And my very special guest today, Alisa Weilerstein. Thank you so much for joining us. My pleasure. Thanks for having me. Of course. And Alisa, you're calling from Montreal all today. So we've got our sort of around the world. We're extending those, those international borders yet again on the podcast. Uh, you have lived with diabetes for going on about 30 years.

[00:06:27] Alisa Weilerstein: If I, uh, if I, my research has paid off correctly, you're, you did your homework at 29 and a half to be 29 and a half. March 1st, 1992 is my, is my day of diagnosis. Oh, wow. So you remember

[00:06:40] Rob Howe: your date as well. I, uh, mine was about 13 years later, January 1st, 2005. So a couple of first

[00:06:45] Alisa Weilerstein: days of the month for both of us. January 1st. Wow. That's a new year's day present.

[00:06:49] Rob Howe: Isn't it happy new year indeed. So what do you remember about those early years or, you know, those, those first few months or that diagnosis month, you know, from your youth?

[00:07:02] Alisa Weilerstein: I mean, I was, it was the month before my 10th birthday. I remember, I mean, the first day, I mean, of course, I'm sure you probably share that experience in me. It just, just this shock and kind of an overwhelming amount of information. And the funny thing is that what I couldn't quite understand, what I couldn't grasp was that I wasn't feeling bad. And yet suddenly I was on a hospital stretcher with a bunch of IVs and my blood sugar was 464, which was a number, of course, I didn't understand. And it was just a bunch of information that was thrown at me, of course, that I just didn't understand. And so my only feeling was my body was fine yesterday and now it's not. And why is that? And so what was very important for me, and I'm sure for a lot of kids who are newly diagnosed, is to understand why and to understand what is happening. And so at the time, I don't know what they do now, but it was a kind of because at the time that was considered catching it relatively early. I was not throwing that many, it was beginning to throw some urine ketones, but I was not in ketoacidosis or anything like that. And so I was in the hospital though for about a week because of the serious amount of information and education that we needed to have. And this was 1992. So that's of course the year that the DCCT trials came out with their results, which definitively proved that with good control, with tight control under the, once you're or seven percent that you could you know you you had a much lower chance of getting um complications and so that was a very hopeful time and so the doctors were very were great and they emphasized that very strongly to my parents who of course were you know i imagine freaking out oh i'm sure yeah because you know you just don't know um when suddenly this happens and you know your kid is suddenly you know poked with a bunch of needles and of course and i think it's such a stressful

[00:09:00] Rob Howe: time for, for all parents and caregivers. Right. But it sounds like you were at least in your immediate family, the only person who lives with diabetes.

[00:09:11] Alisa Weilerstein: That's right. I have a cousin actually who got it at age 23. She's now, she's now in her mid forties and she's doing very well. So, but she got it actually, she's six years older than I am. So she was, I don't know, she, I was already a teenager when she got it. And so she was actually taking advice from me, um, at the time that she, that she was diagnosed. So. Oh, wow. So you,

[00:09:34] Rob Howe: you two are really the trailblazers with diabetes in your family for doing all the hard, uh,

[00:09:39] Alisa Weilerstein: such as, such as it is. Yeah. Yeah. So exactly. Uh, well let's back up a little bit to your

[00:09:45] Rob Howe: professional career, because I think that's, that's a big, a big reason. And I have to, uh, give Harrison, uh, who has recommended you for the podcast and really helped coordinate this interview credit, but you are a classical cellist. And for those of us like me, it may surprise some of our listeners to know that I'm not a huge orchestra head. I'm not deeply plugged into the orchestra community, but what do we need to know about the music that you participate in and play in? Because as you do a couple of Google searches, there's some really profound and iconic pieces that you take part in on a regular basis. Sure. Well, there are many ways to be a

[00:10:23] Alisa Weilerstein: classical you know quote unquote classical musician um i of course i mean if we want to get technical about it i mean classical actually just refers to a period of time so that's between you know roughly 1720 to 1800 this is the classical era um more or less um so we people who who play what people call what let's say western classical music and it's like western concert music. So music that you hear in concerts that's written by composers that range from, generally speaking, from the Baroque period, so like mid 1600s to now. And there's plenty of contemporary classical music around, which is, it's funny, I talk about this a lot because I play a lot of contemporary music too. There are 1000 different styles that people write in now, whereas maybe 50 years ago, the contemporary music of that time, you had to write an extremely dissonant, very cerebral type of way to be taken seriously. And now people write electronic music, they write music that looks back at the past, it's sort of easier to listen to, more tonal, more melodic, more beautiful, quote unquote. And there are others that also write in that very sort of serial, very cerebral style, which is more like a puzzle, let's say. So I like to play everything. Meaning I prefer wearing lots of different hats so I play everything from Bach to Osvaldo Golijov who is an Argentinian slash Eastern European Jewish living composer who's one of the most important composers living today and you should look him up because I think you'd like his music very much. So and you know and everything in between so that's what I like to do and what I don't play in an orchestra I play a soloist so I play concertos with orchestra which mean that it would which means that I play as a soloist with an orchestra accompanying me that's about I don't know 60% of my work I'd say the other part is solo recitals which means that I play on a stage that I'm either by myself or I played with a pianist where we're collaborating the other part is chamber music so this is small ensembles piano trio string quartets uh that kind of stuff and so um and i do this um i'd say i split my time between north america and europe half and half with the um every 18 months a tour to asia of course this is you were still in the pandemic and our industry was hit harder than harder than many i mean every industry was hit very very hard but um live music was one of the really big ones and And so, you know, we stayed at home more than I stayed at home, I think, more than I have since I was 14 years old during this time.

[00:13:09] Rob Howe: I was going to I was going to say, I imagine it was a huge lifestyle change for you, for someone who's been performing live performance day in and day out, traveling, like you said, touring. I saw as I was kind of researching for this interview, I found a video on Carnegie Hall's YouTube where you were basically performing from home. It was live from Carnegie Hall was the program.

[00:13:34] Alisa Weilerstein: Yeah, exactly. And so there were a lot of people who did some amazing streams from home. I think, you know, in the very beginning, when we thought we would only be shut down for, you know, for a few weeks, which is laughable now, of course. Sure. I mean, I actually did a project called 36 Days of Bach, which, I mean, there are six suites for solo cello that were written by Johann Sebastian Bach. and they're very well known and each suite has six movements so i divided it literally into 36 so i did a movement per day and then i would do at the end of every suite i'm sorry um uh at the end of every suite i would um do a facebook live facebook and instagram live um session so that i would interact with people directly because especially at that time in the very beginning um what i really wanted just to do was to connect with people in any way that I could. And I think a lot of people who are performers felt this way because we're used to being in contact with so many people even in the sort of strange way from being on stage.

[00:14:40] Rob Howe: Sure.

[00:14:41] Alisa Weilerstein: Which isn't strange to us. It's just normal for us. And then as things got, you know, as we realized you were in it for the long haul, I mean, people got really creative with technologies and lighting and really, you know, it's funny because a lot of musicians became sound engineers. I mean, they were really into microphones and how to actually make their bedrooms sound like concert halls. I didn't go that far with it. I'm not such a techie, but I know a lot of friends of mine did, which was interesting.

[00:15:13] Rob Howe: Yeah. It's been so cool to see like the different manifestations of like being from home and like creativity within those constraints. Right. So, you know, people producing entire albums from their, from their home, you know, and having to, you know, design a room for that. It's been very interesting. And I think like, you know, no matter what industry, like you said, everyone's been affected in some ways, some more than others. And it's just, it's really interesting for me to see like how creativity manifests itself through different, you know, outputs, whether it's music or art or anything, you know, otherwise, it's very, very, very cool. You mentioned this a little bit already about your trio, and I want to talk a little bit about the Weilerstein trio, which you are in with your parents. So music as part of your family, like, is that, that is like, what's it like to continue to be plugged in and have been plugged in with your family musically for, for all this

[00:16:06] Alisa Weilerstein: time? Well, I mean, we're, we're still, we're very close as a family. We were in contact all the time, but we actually don't play together so much anymore. Maybe, you know, once a year, once every two years or something that we actually play a concert. Everyone's really busy. My parents are both still so active teaching and I'm, you know, you know, finally back to running around as I was before, which makes me very happy. But, you know, I grew up in a musical home. I was my, as you mentioned, my mother's pianist, my father's a violinist. And they were just rehearsing and practicing constantly in the house when I was growing up. And so, um, you know, it was, it was a total immersion environment, which just kind of evolved.

[00:16:48] Rob Howe: What was that like from a diabetes perspective? Obviously you talked about, you know, going in the hospital and sort of getting the diabetes bootcamp over the course of a week. And I'm sure both of your parents were very involved with that. How did that manifest itself when it came home? Uh, you know, how, how does your parents, especially at nine years old, you know, you're doing a lot of things yourself, but you still rely on your parents a great deal. So how did that manifest itself for your life before you sort of became an adult?

[00:17:14] Alisa Weilerstein: I wanted to be as independent as possible. Although, of course, as you said, I mean, that isn't really possible when you're nine, 10 years old, you have to work as a teen. And I'd say my parents were very good about that. Not overly helicopter-ish, but we had the same goals. I mean, I was already quite serious with the cello, which perhaps made me more disciplined in general with dealing with the diabetes. And I also, and I credit my doctors with this also, that they educated us from the very beginning. They said, you can live your life if you control your blood sugar. So it was always like, well, I had no reason to not want to control the blood sugar because it was a big motivating factor. If I wanted to live my life and to do the things I wanted to do, I had to, you know, I had to be vigilant. Of course, you know, try telling that to a hungry 11 year old who wants to eat birthday cake at a, you know, at a birthday party.

[00:18:16] Rob Howe: I think that that's, I guess, you know, that framing is so important, especially like from person to person, because, you know, all even at nine years old, it seems like you embodied a soloist. you know, you wanted to be independent and you wanted to do, you know, do your things and how, and you had a discipline that maybe many nine-year-olds do not have. Uh, but that framework was very similar to what my doctors told me, which was kind of filtering everything through, uh, a lens of like, if you, if you want to be a basketball player, which in which case I did, uh, you can do that if you take care of your diabetes. So it's like using that as sort of fuel as like the, sort of the carrot. Yeah. You, you can't, you can't, um,

[00:18:56] Alisa Weilerstein: you can't play basketball if you're getting low blood sugar all the time you can't play basketball at your best if you're running around at 300 um you know i i can't be at my best if i get low on stage or am 300 on stage it's just it's not going to happen so i mean it was kind of um that that was a motivation in the beginning of course i mean if i think about the lack of technology that was around in the in the 90s i mean i i didn't even have an insulin pump until i was 16 um which means I'd had diabetes for about six years before, um, before I went on a pump and, and I was on, you know, maybe two shots a day. I was testing finger pricking four times a day, which at this time was considered a lot. Um, which is hilarious to me now because right. And before the CGM, I started, I was testing, I don't know, 10 times a day, something like that too. Just, just, just because, um, as part of my, uh, life, I have to travel so much and my days are so irregular, um, you know, I, I was just kind of chasing the insulin all the time, chasing the, um, chasing the blood sugar, you know what I mean? Sure. And I managed it was to test a lot.

[00:20:04] Rob Howe: And I think, you know, like you said, now it seems silly to go back and think that we only tested our blood sugar three to five times a day. Uh, you know, cause that was the quote unquote

[00:20:12] Alisa Weilerstein: prescription level. And now that was tight control recommendation. Right. Right. And,

[00:20:18] Rob Howe: And, and, you know, now, uh, so I, I guess, you know, let's talk a little bit about how you manage your diabetes today. What do you, you know, uh, whether that's CGM or pumping, like you mentioned. Um, and then I'd also, you talked about, um, you're preparing for a performance and, you know, uh, not going to be at your best if you're low or you're high while on stage. How do you, how do you get ready for a big performance or even just a regular performance? What's your routine look like?

[00:20:44] Alisa Weilerstein: um well I now have a CGM I and I I just I just got the T slim uh the tandem pump so now they you know it's the smart ish pump I mean of course it's not sure that's as we want it to be but it's definitely smarter than it used to be so that's it's a huge improvement over over the dumb pumps that that we have for so many years uh but um so this has helped enormously I have to say that the CGM especially that was the big game changer for me that um that I could just see how my blood sugar was trending all the time and so um for example i didn't be pre-cgm i never liked to go on stage below 130 because dropping low on stage which could happen especially because i mean it's like exercise you exert yourself sure um dropping on stage means you lose coordination i mean you know even if i if i'm like 65 i i don't play as well i i mean even though it's not it's not dangerous or something but i i feel it and it's and i don't feel good on stage um so i wanted to myself a threshold to drop to like 90 or something like that which which would be perfect um with a cgm i can i can go much tighter of course because i can see that it's not just 130 and if it's 130 and dropping and i would i would do something about it if it's 130 and rising obviously i might actually even take some insulin um 130 and steady i might just leave it you know and then sort of let things take their course. So that's kind of the difference. And, you know, knowledge is power with diabetes. And so what I like to do in terms of preparation, sort of ritualistic things, I like to arrive to the concert hall at least an hour before to just to slowly get into the concert gown to put my ducks in a row with the cello to make sure that the blood sugar is behaving. um i always as part of my rider i don't really have a big one but i mean um i generally have a low-carb diet so um i'll make sure that there's some nuts backstage just to have as a kind of a protein source um protein and fat just to make sure the blood sugar stays steady and just in case um i obviously have glucose tablets but i also like to have bananas backstage too

[00:23:01] Rob Howe: I think you're the first, uh, you're the first person who's come on the podcast and admitted that there are low snacks in your writer, which is excellent. I love that. I think it's just the perfect diabetes writer. You got to have, got to have some gummy bears or some nuts or something

[00:23:13] Alisa Weilerstein: in there. Yeah. Yeah. But it's, but there, there's a balance too, because I, you know, I am of course very open about the fact that I have type 1 diabetes and I talk about it and everything. However, and I'm sure you probably go through this too, sometimes if you tell somebody who's running an organization that you have type 1 diabetes, they get really scared. And they act worried or concerned in a way that is sort of invasive, I'd say, in a sense and kind of not helpful. um i mean it's it's i'd say it's it's rare that um that the people are like that still but but that but those old attitudes which are from i don't know the 80s or something like that still

[00:23:56] Rob Howe: exist well i i think it's so much so much of that is is very i try to remember because it does happen to me occasionally as well uh not as much but you know people i think fear of the unknown is is a big part of it and i think about uh so many people have come on this podcast and talked about when they were diagnosed, they had no idea they or their family members had no idea about diabetes. And it can be a little bit scary. And like you said, when someone's running an organization and they're trying to consider, you know, all of the potential things that could go wrong. Yep. Uh, so I try to give them a little bit of grace, but yeah, sometimes like they're trying to be overly helpful. And then it's just like, okay, this was, I should have never told you

[00:24:32] Alisa Weilerstein: about this. I just, I just need my banana and mine and the nuts. That's it. Just, that's it.

[00:24:38] Rob Howe: Yep. Um, we talked a little bit about, you know, testing your blood sugar, you know, before CGM eight to 10 times a day, uh, as a cellist, like your fingers are, are very, a huge part of your life and, uh, and your livelihood. And, um, so how did you manage, like, and how do you manage finger sticks even today? Like with, you know, on your, on your cello hands, like, uh, you know, what, what is that like for you? And I, I found it, I remember early on when I was diagnosed, I was playing guitar a lot and my calluses would split open occasionally uh from from the uh from the

[00:25:09] Alisa Weilerstein: finger stick so how do you how do you deal with those things i actually um i only use the bow hand so i never use this hand that that's on the fingerboard so um i use these three fingers these were the fingers that i put to death it's so funny

[00:25:26] Rob Howe: i'm glad you i'm glad you said that because i so i also only test my my right hand which is like my strumming hand or picking hand and and i am no longer like an active even really hobbyist guitar player but i still in my head like i don't test my left hand because it's like oh well what if i want to play guitar this week i don't want to have to deal with it no no no you shouldn't there's no

[00:25:44] Alisa Weilerstein: reason there's no reason to i mean of course now with the cgms you hardly have to test anymore anyway which is great you know just just for calibrations occasionally but i mean you know it's pretty pretty nice not to have to prick the finger anymore and that was one thing i was

[00:25:58] Rob Howe: about for this interview as well, because we don't, I sort of take it for granted now. Uh, I really only calibrate twice a day, you know, sometimes like maybe four times as a large, you know, uh, a high testing day for me. And I just, I was like, Oh yeah, that's maybe that's why my fingers have improved. Like, I just don't have as many, like, you know, pockmarks. It's just one of those things that you sort of forget. And, you know, thinking through people who are diagnosed with diabetes today may never know what it's like to test 10 times a day. And that, that is a, that's a big, a big win for those people. Fantastic. Yeah. I mean, for kids now, it's really a different story. It really is. Um, so let's talk a little bit about, um, you know, when you're on the road and when you're, you know, spending a lot of time, you know, traveling, um, how do you, you know, what are your sort of tips or essential kind of go-tos for when you're managing your diabetes on the road? Generally speaking, um, a low carb diet

[00:26:47] Alisa Weilerstein: helps a lot. Um, just to, I mean, it's, um, I don't know if you've read this, it's, it's kind, it's a bit of a bit extreme, but Dr. Bernstein's Diabetes Solution. Yep. It's like I said, it's extreme. It's not for everybody, but there's some good advice in there, which is the, I mean, one of them is the law of small numbers. I mean, if you're eating constantly at restaurants, which is the issue for traveling is that you're not cooking at home. You don't really know what's in the food. So there are some meal choices, which are easier than others, where there's going to there's less potential for there to be um you know hidden cornstarch in a sauce that is going to send your blood sugar sky high or um or you know eating at an italian restaurant where you're going to have pizza where you don't know what they've done with the dough and things like you can guesstimate but it's um but there's a lot of potential for errors so i generally avoid anything high carb and um i generally um i've done very well with japanese food which is very clean and delicious. And I mean, I could live on it just for the taste. I think it's the best. And like Korean barbecue, which I mean, it has a little bit of sugar in the sauces, but if you allow for this, it's still, you allow for that possibility. It's still, it's hard to mess up too badly, basically. And it's a lot of protein and vegetables. And so that's kind of what I subsist on most of the time, protein and vegetables and some occasional fruits, which are easy to count. and uh and also just keeping you know watching the blood sugar like a hawk really and so uh which is easy with it with the cgm and what i used to do was just test 10 times a day so yeah it's so

[00:28:26] Rob Howe: much easier now to look at and for me even like performance wise you're able to see what your blood sugar does during a performance now which you know the other thing which i found which i

[00:28:35] Alisa Weilerstein: know other people do different things uh with jet lag which is a problem uh well or let's say a challenge going, um, going across an ocean if you're dealing with five, six hour, uh, different. And, and I, and I actually live in California most of the time. So, um, uh, you know, I can have a nine hour time difference if I'm going to Europe. And so, um, I actually change the clock on the pump. I go cold Turkey onto the new time. I find that it might, might be that like a day or two is dicey, but then after that you're set. So. And you mentioned this a little bit, uh, earlier,

[00:29:08] Rob Howe: about Dr. Bernstein's like the diabetes solution and how some people say it's a little bit rigid, which I think is a fair critique and it's, it's not for everyone. However, one of my favorite things about the method is that Dr. Bernstein uses it himself and he is now in an advanced age and living his life with diabetes. And I think that's such a great example of, uh, 5.0 and, you know, exercises every day and like, you know, has, sees patients and is, you know, in his eighties. And I just think of that as like a really rich full life for a person with diabetes that did not exist prior to, you know, some of his work. And now, and now with technology, I think it's a little bit easier to kind of pick and choose how you, what your lifestyle is like. But, um, you know, for 20 years ago or 40 years ago, when he first published his first study, he was truly breaking new ground. And I think now it's just, and in fact, when we, because,

[00:30:03] Alisa Weilerstein: my mother discovered it in 1993, 1994. And for a growing kid, eating six grams of carb for breakfast is maybe not the greatest, whatever. But we took so much from it, but it made our doctors very upset. They were not into it at all. I had to actually change doctors. He said, well, your control's a lot better, but I don't do this. So if it works, great, but find somebody else to see you. It was like that. But now, of course, it's much more

[00:30:33] Rob Howe: accepted. It is. And I think when people like innovation, and this is a very off topic, I suppose, but innovation like that, I think initially is always regarded with some sort of healthy skepticism. And I think especially in the scientific community, early innovation is often regarded as heresy or as incorrect. And so it's so interesting to see as technology evolves and as time passes, looking back on some of these innovations that were sort of skimmed over or regarded as not applicable to the general population now sort of being more widely accepted. It's really interesting to dig into. Okay. So back to you, back to the interview. you. For you, as you think back, you know, either recently or in your career thus far, do you have a favorite moment performing on a stage or a favorite, you know, point, a moment in time that you can look back on and say, wow, this was, you know, truly an

[00:31:31] Alisa Weilerstein: amazing experience? It's very hard to pick one moment, but if I'm thinking of something of recent history, even though it feels like a long time ago because it was before the pandemic, but um i played all six box suites in a concert uh in in one so it was almost three hours program um at the elbphilharmonie in hamburg um so this is a um this is the same acquisition who did walt disney concert hall in in la um it's an iconic building i mean just gorgeous to look out from the outside i mean it actually brought in millions more tourists to hamburg Germany to just because it was an architectural marvel. And also, you know, its construction was, of course, extended and delayed. And for years, I think it was supposed to open, I don't know, 2013, and it opened, I don't know, five years late, something like that. But just to have the chance to do the complete Goff program there was just incredibly special, just and kind of a rite passage in a way. And so that, so that, so that, so that, that felt pretty great.

[00:32:44] Rob Howe: Yeah, definitely. I think, you know, looking back at, you know, at that, at your nine-year-old self being told by the doctors, Hey, you can do, you know, chase your dreams or you can do what you want. If you take care of your diabetes, hearing those moments, I think is so important for, you know, parents and caregivers and also young people to know that like there, there really is something there on the other side.

[00:33:04] Alisa Weilerstein: If, you know, if you're able to take care of yourself, when, when you're in that hospital in hearing these things, it's hard to imagine, but there absolutely is. And actually, I mean, we only talked about the first day when you asked me about those first months. I would say the first month was hard because it was an adjustment. The first month, like those first 30 days, I also didn't feel very good because I wasn't used to having good blood sugar. So the body has to adjust. I mean, if you're used to running so high, the body is not quite accustomed to it right but then um i had also lost a considerable amount of weight i was never i mean i was always more muscular body type and i was really skinny um and so i was a bit weak and so then like just regaining strength and uh and everything uh was you know it's a process like having growing pains um and mentally adjusting to the new reality for the parents and and the child is is not easy. However, right after that, life got pretty great. I have to say, and I never doubted for a second that I would be able to do what I wanted to do. Because I integrated this very, very fast into my life, taking in at the time, it was two injections a day and, and testing and understanding the blood sugar. And I talked about it with all of my friends in fact i even did a sort of class presentation on on what it was like to live oh wow um because in a way i mean it was well i mean let's face it it sucks to have have a diagnosis like this and to have to integrate it into your life but i i thought well you know if i resist it it's going to be very hard if i accept it um life is going to be much easier and so that was part of

[00:34:54] Rob Howe: my process of accepting it into my life. That's powerful. I think, you know, and I'd be interested to see if you gave me an idea. I mean, I've asked, you know, listeners of the podcast and folks on social media, you know, how did, how did they introduce their diabetes to their friends and to their classrooms? Because I'm sure there's been, uh, you know, many presentations like that, sort of a show and tell of like, Hey, this is what I'm going through now and normalizing that

[00:35:16] Alisa Weilerstein: with the class and the friends. Absolutely. And, um, I remember at the time I was in fourth grade or something. And so I, um, I took, and I would, you know, do my pre-lunch test. And of course, at that time you had to wait 45 seconds for the meter to click down. And, um, I would always bring a friend with me to when, when, when I tested my blood sugar, that was important too. And I,

[00:35:38] Rob Howe: you know, that I wouldn't have to be by myself. It's so important to do that. And I think even for myself, it, you know, in the moment you're like, Hey, this is my friend and I'm going to go accompany them to test blood sugar and people are curious, but I think those moments are important, but it's the moments that come after that for the person who tagged along, because it could be a decade later down the road when they see someone testing their blood sugar, they recognize it and say, Oh, my friend, my, yeah, my friend, Alisa had, you know, had diabetes for me, uh, one of my athletic trainers in college, um, he and I didn't, didn't really keep in touch for, for a number of years. And, and we were able to reconnect recently and he was saying, Hey, uh, just wanted to thank you. I've had five athletes with diabetes, uh, in the past decade. Uh, and because of our work together back, you know, way back when very early on, we've been able to, you know, manage and, and help, you know, parents feel a little bit more comfortable, help the athletes feel more comfortable. It's, it's really powerful. Um, okay. So kind of the, the, the sort of wrapping up the interview sort of question here, um, is there any advice that you'd go back and give your 10 year old self, if you were able to have a conversation with yourself in that first year of being diagnosed with diabetes, what advice

[00:36:48] Alisa Weilerstein: would you give your younger self? Accept the card you've been dealt and do the best you can with it.

[00:36:55] Rob Howe: Do you feel like you struggled at times with acceptance?

[00:37:01] Alisa Weilerstein: I have to say not when I was 10. I think I struggled with it later as a teenager, as a college freshman. As a college freshman, my control was the worst. I mean, I would say I was I had marginal control like I you know I kept myself you know sort of okay um so that I could kind of survive like that but it long term it would have been a problem and um it was also you know finally being out from my parents roof and kind of seeing what boundaries I could push and and it took a little while to come back and to really realize I was doing this for myself because I'm, you know, we're in this for the long haul. That's so, that's so important to hear

[00:37:48] Rob Howe: people like you say that. And, and I'll say it as well. My freshman and sophomore year of college were the worst my control ever was. I mean, and I think part of that is just, there's so much new going on in your life. You're changing as a person, you know, you're going through change. Yeah. There's nobody to hold you accountable. And so that is super normal. Um, but I think a lot of parents and people with diabetes also carry a lot of burden about those those years in their life. And they carry a lot of fear when they're going on transitioning from high school to college.

[00:38:18] Alisa Weilerstein: Exactly. And I'm a parent myself now. I mean, I mean, she's not nearly in college, but she's five. But I mean, and thank goodness, she is she has no sign of type 1 diabetes. Although, of course, you know, you never know down the line what could happen. But if I could give any advice to parents who are going through this, I mean, And it's funny how they say, well, an adolescent or a very young adult might be, might sort of want to shut you out, but they always come back. With the diabetes, that will happen too.

[00:38:50] Rob Howe: Yeah. They'll want to keep that close and kind of guard that diabetes. And I think...

[00:38:57] Alisa Weilerstein: Yeah. And unfortunately, it's very difficult, of course, I can imagine for a parent to watch that and to worry.

[00:39:05] Rob Howe: but, um, they'll come back. I think that's great advice. And, um, I think again, just kind of normalizing all of these things. And I love these small conversations that I'm able to get into with amazing guests like you, cause we could look at, we can talk about your performances, uh, across the world. Uh, and, and we can talk about these, these big peak moments that are obviously like super interesting for people to listen to, but it's so important to hear about those. Like, Hey, it was difficult. I was a difficult person with diabetes when I was a teenager. That's the most relatable and normal thing. And everybody goes through it. Yeah. Well, at least I think

[00:39:43] Alisa Weilerstein: sorry, go ahead. I cut you off. No, I was just saying, I mean, it's a self-management condition. And so, I mean, it's normal. I mean, you're going to have your ups and downs and your times where you're a bit burned out and less motivated than others. It's just, it's part of it.

[00:39:58] Rob Howe: It is. Elisa, thank you so much for your time today. I know that you are, that you are so busy And I appreciate, you know, with the time zone coordination. And again, I got to give a big shout out to Harrison for making this interview happen. For those of us who want to keep track of you and kind of, you know, track your career, what is the best way for us to do that?

[00:40:18] Alisa Weilerstein: You can check my website or which is AlisaWeilerstein.com or you can follow me on Instagram, Twitter, Facebook as well. So just look me up and you'll find me.

[00:40:28] Rob Howe: Perfect. And I'll keep links for everything here in the show notes. But, uh, Alisa, thank you so much for, for your time. And, uh, thank you for all that you do for people with diabetes and, uh, able to point to you as somebody who is, is truly living beyond, uh, their, their diagnosis. And, uh, thank you so much.