EPISODE SUMMARY
Lisa Greer is a mother of five, a former executive and business owner, a convener of charitable events, and the author of Philanthropy Revolution. We discuss her childrens' diagnoses with cancer and adolescent-onset epilepsy and how that affected the whole family. Lisa explains how transparency fosters trust, something that applies to the worlds of charitable giving, healthcare, and parenting. There are so many impactful takeaways from this wide-ranging conversation with Lisa, as the wisdom she has gained in her variety of roles interconnect in sometimes surprising ways.
For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/KE1KrICHEPM
ABOUT LISA GREER
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[00:00:00] Lisa Greer: It's the memory of the pain. It's the memory of being pulled out of school. And in my daughter's case, it was having a kid that everybody was talking about and trying to figure out how do I protect her from that? And is that good or bad to be known as the kid with cancer?
[00:00:19] Carole Blueweiss: Welcome to Wisdom Shared, where parents and children are the experts and where connection inspires change. I am your host, Carole Blueweiss. And today I have as my special guest Lisa Greer, a mother of five, a former studio executive at NBC and Universal Studios, and later the owner of an egg donor company that helped women who were having difficulty with pregnancy. Lisa sold that company when she suddenly became a member of the 1%, which allowed her to quit her day job.
[00:00:51] To learn more about Lisa's story, you'll have to read her bestselling book, Philanthropy Revolution: How to Inspire Donors, Build Relationships, and Make a Difference. While reading Lisa's book, I was struck by how the advice in her book on how to best approach donors and ask them for money seem to mimic her approach to parenting and even speaking with healthcare practitioners.
[00:01:20] For example, she writes about the importance of curiosity, listening aggressively, and being honest. When her 10-year-old daughter was diagnosed with cancer in her sinus and then her teenage son with epilepsy, a seizure disorder, Lisa found herself in new territory where she needed to use her curiosity and listening skills to understand all the choices and to understand and empathize with her children.
[00:01:52] She had some help from her husband, Joshua Greer, who as a child he was diagnosed with a chronic condition called Crohn's Disease, which causes inflammation of the digestive tract. His familiarity with the medical world helped Lisa feel less intimidated and more proactive when it came to speaking to the doctors and asking all her questions, but in spite of this familiarity, nothing prepared her for the multitude of challenges that followed her kids' diagnoses.
[00:02:22] In this episode of Wisdom Shared, we will hear Lisa's perspective on parenting and communicating with medical staff and her perspective on giving and receiving. We will hear about her insights, her struggles, her questions, her breakthroughs, and her advocacy. Let's now listen to Lisa and her wisdom.
[00:02:46] Do you have a childhood memory that sticks with you today?
[00:02:49] Lisa Greer: My biggest childhood memory is my father saying to me when I was about 13 years old in front of a group of people. My parents were into events, like cocktail parties, and he looked at me and he said, "oh, it's too bad that you aren't a boy. You would've made a great attorney."
[00:03:05] He was an attorney. I remember it clear as day, it's one of those things where I think that shaped a lot of what I do. I'm a fixer, which could be a good thing or a bad thing if overdone, which I've probably done a little bit of both, but I can't help myself. When I see that there is something in the world that isn't being done, in my opinion, correctly or isn't being done in the best way it could be done, I have tools to understand why it's not right. Then I just go to fixing it, whether it be dealing with my daughter's illness or dealing with my husband's chronic illness or dealing with seeing that philanthropy in terms of charitable giving, in my opinion, is not being done in a productive way.
[00:03:51] Carole Blueweiss: And what does Lisa do when she sees that the world of philanthropy isn't quite working as it should or it could? She writes a book where she describes how fundraisers tend to ask potential donors for money and how maybe they could be rethinking their strategy.
[00:04:06] Lisa Greer: It's not as successful as it could be and a lot of organizations could fail if the way that it's being done isn't changed. So that's why I wrote the book. It's a blessing and a curse because I do see more things that need to be fixed than I could possibly fix.
[00:04:21] Carole Blueweiss: In her book, Philanthropy Revolution, Lisa explains why she thinks an intervention into the fundraiser community is needed. Her drive to fix what's not right led her to focus on the non-profit sector, as she says, to save giving. Lisa also looks inward to help herself change in new ways. She learns from Stacey Barrows, a doctor of physical therapy who melds the Feldenkrais Method, Pilates, and her smart roller practice.
[00:04:52] I asked Lisa about her experience with the Feldenkrais Method, which you can find more about in the show notes. The irony here is that the method is about learning to try less hard and not to think about fixing, but to become more aware and move with less effort. So I was curious what Lisa had to say about that.
[00:05:11] I know from one of the ideas is that you're trying not so much to fix. You're trying more to do something different. So I wonder if your experience with the Feldenkrais Method is helping you in any way, or making you more aware of alternative ways to fix.
[00:05:29] Lisa Greer: Feldenkrais erased the panicking where every little thing that was wrong, oh my God, I've gotta fix that right now. My elbow hurts. I have to go to a arm doctor. I have to stop and take a breath and say, no. My body knows what it needs to do and I need to practice some of the Feldenkrais things I've learned that are very slow and very quiet and low key, and that things then work out. Maybe that's why it's working for me because it's so diametrically opposed to how I do everything else.
[00:05:59] Carole Blueweiss: That's when it's usually most helpful is when you're introduced to something that's not like you usually think.
[00:06:06] Lisa Greer: I think that's it. I also do reflexology and same kind of thing, go almost into a trance. So, if I'm trying to write an article, which I do a lot of writing, I stop worrying, and then I'm able to think creatively.
[00:06:22] Carole Blueweiss: You said you have five children.
[00:06:25] Lisa Greer: Right. The oldest was just 36, and then I have 16-year-old twins and two children in between.
[00:06:32] Carole Blueweiss: One of your children had cancer. Do I understand that right?
[00:06:35] Lisa Greer: Yeah, that's right. My middle daughter was diagnosed with an extremely rare tumor in her sinus when she was 10 years old, and she was asymptomatic. We found it because she was getting braces early. She matured a little bit faster than other kids. They give braces to you earlier now anyway. And she went to go have those x-rays and they said they found something that they just thought was an unerupted baby tooth or a cyst, and not to worry. So I didn't, and found out very soon after that what they thought was a cyst was actually the edge of a very large tumor that was in her sinus.
[00:07:10] Carole Blueweiss: And how old was she?
[00:07:11] Lisa Greer: Ten.
[00:07:12] Carole Blueweiss: 10 years old. From there, there was a journey of diagnosing and healing, and I imagine a lot of things going in a different direction.
[00:07:24] Lisa Greer: Yeah, yeah. Dealing with a child who has no symptoms and has just been told that they have cancer was difficult. I did it in a public place. We did it. We took her out to a deli. I felt it would be less hysterical that way. She wanted to know if she was gonna die. And then there were big surgeries, then there were smaller surgeries. Thankfully, she didn't have to have chemo or radiation because her type of cancer was a cystic type where I guess it could have metastasized, but it was really contained within a certain area.
[00:07:52] She has had reconstructive surgery since then, and it's an ongoing thing. Right now, she doesn't have teeth in her upper jaw on one side, and so we've done a variety of different types of reconstructive processes to try and solve some of that. We haven't found a solution yet that works, and so we will continue to keep looking.
[00:08:13] But at the moment, she's content. Knock on wood. She's fine. She's free of all of that. She's 27. You don't forget things like that. So she's got a physical piece that stays with her that you can see if she smiles really broadly. She doesn't have pain typically, but there's related issues like with her sinuses and things that seem to come up.
[00:08:32] And then as a parent, I don't think you ever, ever outgrow or completely leave the idea that every stomach ache could be something else because it was such a shock when this happened.
[00:08:42] Carole Blueweiss: What advice would you have for parents that first find out of something like this? What worked best with you and your daughter in terms of coping with this traumatic news?
[00:08:54] Lisa Greer: I do think talking to other people is helpful. I didn't really have anyone else to talk to, so I made it up as I went along. Dealing with other children was an issue. My other kids were totally freaked out. I had some friends that I didn't talk to during that whole time because they were freaked out by the idea of kid had cancer.
[00:09:11] There were issues at school about people marking her as the kid with cancer, things like that. But I think talking to other people who've been through some of it is extremely helpful. And right now my daughter is part of the group at an organization called myFace based at right now at NYU in New York.
[00:09:29] And she, for the first time in the last year and a half, has been able to be part of a group of young adults who've had facial differences or facial issues, surgically or with disease, and who are able to talk to each other about what their lives are like and how they deal with stuff. And I think that's extremely helpful.
[00:09:47] As a parent. I have to say, I felt totally alone. This is was my third child and I trusted that I was just gonna figure it out. Also, my husband was incredibly helpful because he had been diagnosed with a bad disease when he was a kid. So he was very familiar with hospitals and what different machines did and how that looked.
[00:10:07] And we also used the child life person at Children's Hospital here, was phenomenal and explained things to us and I think that's really important. People now who have kids who are in the hospital or even young adults, I try to offer them a lot of the advice, even if it's unsolicited, that I know. Things like it's okay, and in fact, you should ask for what you need. We had this one kid that I went to go visit who'd had a Crohn's surgery, and I walked into the room to check on her. She and her mother were there, I think she was like 17. I said, how's it going? And they said, fine, but she's really cold. So I said, they have these wonderful warm blankets here and you can ask for those and, you know, just a minute, I'll go get that for you.
[00:10:48] And they were so surprised that it was something you could do, that you could just ask and that it was something they had because they didn't know, you know, and I said, and if you need more medication, it's okay to ask. And these really highly intelligent, highly successful family, but they felt completely intimidated by this whole medical thing and by hospitals.
[00:11:08] And I find that that happens a lot. I used to be intimidated by math. My brain would just fuzz over whenever something math would happen until I got over it. And I think it's the same here with hospitals and medical things, and some of that is maybe just loss of control. That's part of the game, part of the whole picture.
[00:11:24] But you just feel very, very vulnerable and I think it makes some people freeze. And I would be happy if every hospital said, let us look in your database and find somebody who's been through something similar that you could talk to. And for some reason, maybe it's a HIPAA thing, I don't know. But it feels like there should be something like that and some of the stuff we can get online, but you don't really know who you're talking to and that gets a little weird.
[00:11:47] And some doctors, if both parties agree, are willing to suggest that, find somebody that you can talk to who's in a similar situation. It would've been nice. And I know for my daughter now, she's very grateful that she has people to talk to even at this late date because this is something that she has to live with.
[00:12:04] Carole Blueweiss: I find that a lot of parents say that finally finding that support is huge. In this case, your daughter found her own support. Did you find support for yourself?
[00:12:14] Lisa Greer: Yes and no. I became involved with our hospital over time when we first started giving. And through that, I became very involved with both working with trying to find solutions for Crohn's disease, which was a gift that we gave to the hospital, but also in terms of things with, like with my daughter and other people who've had issues.
[00:12:35] I'm around doctors a lot now and I don't feel intimidated by them, and they seem to like that, so we're able to have conversations. I can have lunches with some of them. We can talk about some of these things, and it's so much easier when you talk about it. When you don't, it just tears you up and it's hard enough going through this in general and then managing other children and managing work and managing friends and relatives and all of those kinds of things.
[00:12:57] It would've been way worse if my husband had not been so familiar with hospitals. I just had this conversation with someone the other day whose kid at a similar age had to go through a back surgery and there's a period of time where they're in a not really waking state like that post-surgery and sometimes for a few days, and both of us were saying that our kids changed after that surgery and we don't know if it's something they heard or some vision they had or dream or something, I don't know.
[00:13:26] But both of our kids changed in different ways during that time, like woke up on the other end with different interests. In my case, my daughter got super into creative writing and she had never been interested in that before. I've heard kids all of a sudden be interested in sports or whatever their favorite thing is, they're just not interested in anymore.
[00:13:46] So that's another interesting thing that happens. But I have to say that as I go through life, I keep meeting people who've had these kinds of traumatic situations with their kids and medical stuff. Even with themselves. It's not like a thing that is buried in the past. It stays with you. It's the memory of the pain.
[00:14:04] It's the memory of being pulled out of school. And in my daughter's case, it was having a kid that everybody was talking about and trying to figure out how do I protect her from that? And is that good or bad to be known as the kid with cancer?
[00:14:16] Carole Blueweiss: Did she look different when she went back to school after the surgery?
[00:14:19] Lisa Greer: Well, she couldn't talk. She could make sounds, but until she got the right appliance for her mouth, which they had to wait until swelling went down. And luckily she had a surgery during the summer, so a lot of that happened during the summer and she was home and wasn't a big issue. But we developed a little bit of a secret odd language between the two of us so that we could talk about things because she just couldn't talk normally.
[00:14:42] She could write down things, but she couldn't talk. And eventually after a few months, she was able to get this appliance in her mouth where she was able to speak. And yeah, it was difficult. She looked a little bit, I would, I don't think dramatically different, but a little bit, but certainly she had to leave school, including college.
[00:15:01] There was always that issue of, can you go to, we live in Los Angeles, so can you go to New York for school? What if something happens? Are there doctors in these various places? And she's a world traveler and a food writer. I had to really weigh in my head how worried am I? You know, what if something happens?
[00:15:17] And what if she calls me with a stomach ache, or she calls and says she has a headache and she thinks that it might be something coming back? That was always there. So as a parent, you weigh that and say, look, what's a realistic concern and what's good for my child's growth? And I think she's a very high functioning together kid now.
[00:15:35] There's still, most people don't notice that there's anything wrong, but it's because she's gotten really good at looking at you at the right side and that kind of thing. As she's gotten more involved with this organization and this support group, I noticed that she doesn't worry as much about what side she has a picture taken on anymore because she's seeing other kids with issues.
[00:15:53] Carole Blueweiss: I looked at myFace, which is the organization you were speaking about, which looks like an amazing organization, multifaceted, and I saw that they have a lot of articles that were published about that movie Wonder.
[00:16:07] Lisa Greer: Right.
[00:16:07] Carole Blueweiss: I wondered if your daughter was experiencing any of that, because I did see the movie and read the book, and that's probably what most of us have a vision of in terms of facial differences. But I am, it sounds like in your daughter's case, it wasn't so much about the physical in terms of going back to school or being with her friends again afterwards.
[00:16:31] Lisa Greer: There's a part of this that kind of skipped over that piece because we moved during that summer, we were moving anyway. My husband and I had actually just got married and we found out she had cancer the day we came home from our honeymoon.
[00:16:44] So we were getting ready to move to a different town and a different school. It was coincidental, but because of that, she went from being the cancer kid that people had known since kindergarten, because I think she was like in fifth grade then or fourth grade, to the deaf kid in this new town. And then once she started talking, that kind of just went away.
[00:17:03] But in terms of friends, there weren't a whole lot of friends that she continued with in the new school. She made new friends. So I have to say there wasn't a lot of continuity there. I think there was kind of a hard stop almost.
[00:17:17] Carole Blueweiss: And then she made new friends in the new school.
[00:17:19] Lisa Greer: Right, exactly.
[00:17:21] Carole Blueweiss: Is there anything that you know now that you wish you knew then?
[00:17:26] Lisa Greer: There still aren't a lot of people who have what she has, but it didn't occur to me that, oh, there's other kinds of facial things people have and other kids who go through surgery and cancers, that there are support things. At that point, there weren't the number of online resources that there are now at all.
[00:17:40] I also think those can be good and bad. They can also make you crazy and you don't know if the people that you're talking to are similar minded, or if they're people who are just, you know, ranting and you don't know if they're telling the truth and that kind of thing. I might look a little harder for help, for resources, and who knows, maybe that's the time with Feldenkrais, that I look to help other people. I wasn't the person who looked for help from other resources.
[00:18:03] I just educated myself, learned how hospitals work, learned about medicine, learned what they were talking about, learned how to describe this disease, learned what kind of blood pressure cuffs and what kind of tools she needed when she went to CAT scans, if she was going to a hospital that didn't have child-sized stuff.
[00:18:20] So it was, I was learning every minute of every day. I was also very conscious about my other kids being okay, and luckily they were older. So it was possibly a little bit easier for them, but they were also totally freaked out by what was going on. I think I came to the new school with her new teachers and the new town with a new outlook.
[00:18:42] I certainly didn't feel like there were any resources available to me in terms of how I felt. You have to keep the worry under control, but you also want to feel it because it's real. So, it's an interesting dichotomy.
[00:18:56] Carole Blueweiss: So the way that you found to take care of yourself.
[00:18:58] Lisa Greer: And, by the way, I couldn't read a lot about this because it was, there were like nine people in the country or the world or something who got it every year. They just said, just don't even bother looking. Because even if I was to look on the internet today, there still wouldn't be much.
[00:19:10] Carole Blueweiss: You were starting to say that there's something that you would love parents to know.
[00:19:14] Lisa Greer: Yeah. We went to this therapist and I had spent, I also was mostly supporting, I was completely supporting my family at that point, and I had three kids and I was the breadwinner, so I had to deal with that kind of pressure.
[00:19:31] But having said that, I was still at every single appointment with her. I was the only person who could talk, who would understand her at some points because she was unable to talk clearly. But a couple years later we went to therapy together and she told the therapist that I had been absent during that whole time and that her father had been, her father and her stepfather had been absent as well, which couldn't have been further from the truth.
[00:19:52] But that was really painful and it was really hard for both my husband and I for a couple of years. And she just kept saying, I don't remember you doing anything. I don't, I just don't remember you helping me at all. And I was like, I don't understand how that's possible for you to say that and was pretty angry.
[00:20:09] And then you start thinking like, you know, have I been gaslit, I guess is what they would call it today. As she got older, it's just all got back into place. It seemed like it was some sort of a teenage thing. She does remember a little bit saying those things. But she doesn't really remember why she said them.
[00:20:23] She's like, of course you guys were there every minute. Of course you helped me. Of course you were next to me. But that was like a sock in the stomach for a while. It was really hard and trying to figure out how did she see it. This was after the major surgeries were over.
[00:20:36] Carole Blueweiss: Did the therapist hear her say that?
[00:20:39] Lisa Greer: Yeah, and so therapist didn't know if that's what happened or not. I mean, my child was saying one thing and I was saying another, and I felt really weird to have to defend myself with that and, but it was just some trauma piece, traumatic way of dealing with trauma that she had come up with in her growing brain when she was, whatever it was, 12 or 13 or 14 years old.
[00:21:02] Carole Blueweiss: In my little experience with life, I know that kids like to direct their anger no matter what at their parents. Right?
[00:21:08] Lisa Greer: Right. But then when you've been through this kind of thing and feel beaten up and that you've come out of it okay and your kid's healthy and you're, you managed to keep your family together and be able to support your family, and then being told that is just like, wow, how did that happen? So that was a very difficult time.
[00:21:26] Carole Blueweiss: Yeah. I imagine, like that's the last thing you ever expected to hear.
[00:21:30] Lisa Greer: Right. And I wanted to say that to your listeners because if anybody else, I'm sure it's not an isolated case. There are weird things that happen as kids grow up and they deal with things differently.
[00:21:40] One of my kids ran screaming out of the hospital because she couldn't stand seeing her sister like that. And she's totally cool with everything medical now and she doesn't really know why she did it, but she was a teenager and that's what she did. So it's fascinating seeing how everybody responded in their own way. And a lot of it was based on their own background and their age.
[00:22:00] Carole Blueweiss: Yeah. Yeah. And it affects different people differently. Right? So, just knowing that I think is helpful. There's no right way or wrong way.
[00:22:11] Lisa Greer: Yeah.
[00:22:11] Carole Blueweiss: I wanted to ask you about a quote that you actually started your book with. It's a quote by Christopher Penn. "Transparency is the currency of trust." Why did you choose that?
[00:22:22] Lisa Greer: One of the biggest issues in the world of philanthropy and in giving, charitable fundraising, is trust. And there's different organizations that do a trust report periodically. Every year, every two years. And the level of trust, I think this is an issue in our country as well, but related to philanthropy, that seems to be a big issue for givers.
[00:22:45] People who want to give because they're afraid. And the biggest question I get from prospective donors is, how do I know if this organization is legit? They always say it the same way. How do I know if it's legit? Either something bad will be done with it or the person will just not do what they were supposed to do.
[00:23:00] And so what I was trying to convey by putting the quote there is that a lot of that has to do with things being transparent, and if there's transparency, and if you're donors, and if you know both the good, the bad, the ugly, all of that about an organization. I mean, you don't have to tell them every little teeny thing, but generally how you're doing, you're actually going to develop more trust.
[00:23:22] For example, I was just writing a piece about this, that if you go and someone's asking you for money, and you say, tell me how your organization's doing. And they say everything's great. We're wonderful. We just keep growing and growing. Everything's wonderful. And say, okay, but where are the, what we sometimes call pain points, you know, where are the areas that are an issue?
[00:23:40] And they say, oh, you know, really nothing. We're doing just great. Because they're afraid that if you say something bad, then you're not gonna give. And it's actually completely the opposite because if someone tells me that everything's peachy keen and fine, I think they're lying because nobody has everything that's peachy keen and fine. There's always something that can be done better.
[00:23:59] Most fundraisers do not practice their job in that way. They're more inclined to, and I think they're probably told by the organizations, don't ever say anything negative, but if someone says to me, you know, all this is going great, but we have this one issue that's really tough, that we're working on, A, I'm gonna trust them a million times more, and B, I'm gonna ask how I can help them.
[00:24:21] And so they don't even have to say, I need money, because it's gonna be clear they need money because they've got this problem or they need a referral or resource. So that is a very basic change that I'm trying to make in that world, and I think it will make a world of difference as people start realizing that makes a whole lot more sense.
[00:24:42] Carole Blueweiss: Hmm. That's really interesting. One reason I ask that question is because me being in healthcare, I found that quote to be very transferable to that field as well. So I wonder, in your experience with transparency in your medical team, how do you decipher that in terms of what you experienced, good and bad?
[00:25:00] Lisa Greer: Yeah. I do think there's a lot that happens in medicine. With my daughter's situation, I feel like they were pretty honest with us. There were some things that some of the doctors told us that they were certain would go a certain way and they didn't. And I think that's a medical profession thing. They want to instill confidence in you so that you do trust them.
[00:25:21] And I did. But years later, we've had other doctors and that's also a thing, is that we also learn that doctors don't want to say anything bad about another doctor, but they do sometimes say, oh, well, you know, you really should have never had that particular surgery. And it makes you feel pretty crappy at that point.
[00:25:37] I always just think it's hindsight is 20/20 and people have different opinions. And one of the neat things about medicine is that, especially surgical stuff, is that new technology comes out all the time, so things that seem obvious that you could do a certain way today, you might not have been able to do at all 10 years ago.
[00:25:52] So that's how I rationalize that. I never felt belittled by the doctors. I did feel like they had some blind spots, especially having a young teenager. There's a lot of stuff in the medical world that is catering to kids and there's a lot of things that cater to adults, but there's not a lot that caters to teenagers, that's really in between.
[00:26:14] So I had to take my 15-year-old now to a doctor's appointment a few days ago, and she had to have some type of test and it was at the hospital clinical kind of thing. I wanted her to go to a big person doctor and they said, no, she's 15. You have to wait till you're 18. So I said, okay, fine. The only other option was a pediatric doctor, so we went the pediatric doctor. He was great.
[00:26:35] He was very respectful and wonderful. But the room was clearly designed for a 3-year-old, and so we just laughed at it. But it was like you have one or the other. And that's pretty striking to me that there's plenty of teenagers or people, let's say between 10 and 18 and 10 and 17, and they're just caught in the middle.
[00:26:53] And when my daughter got out of a second big surgery, she was 15 at that point. I remember at the doctor had give me a couple different choices of hospitals, and I chose the one that had a new children's hospital within a bigger hospital because they evidently had desktop computers and that kind of thing, and a lot of tech stuff that the kids could use while they were recovering in the hospital, could go in their wheelchair, whatever.
[00:27:12] And we were in recovery and I said, oh, we're gonna go back. And I, so a few days before, I showed my daughter all the neat things online that this part had and that she was gonna go to this new pediatric thing and they had all this stuff for teenagers. And when we were in recovery, she says, oh, we have to wait a little longer because we're waiting for a room.
[00:27:28] I said, oh, it's okay. I said, but we're so excited we get to go to this fabulous new room. And they said, oh no, you know, we really don't have enough rooms for kids who are older, so you'll have to go in the adult room, which was a completely different experience and horrible actually. So it was, that's been made very clear to me over and over again, that kind of missing piece in medicine.
[00:27:50] Carole Blueweiss: You'd think there would be a specialty, right? Because definitely kids change. Like an adolescent specialty in medicine.
[00:27:57] Lisa Greer: Right? I don't know if that even exists. My son developed epilepsy a few years ago, and it's adolescent-onset epilepsy, which is a little bit different than the kind that you have when you're baby.
[00:28:06] And they have an emergency medicine they tell you about. He was, I think he was maybe 12 when he was diagnosed. And the emergency medicine is something that you basically stick this thing in their butt and push this button. And he's a 12-year-old boy. He's not very excited about that. And I take him to, and he had this particular thing, they've now changed the medicine and there's this alternate that you just basically use like an inhaler in your nose.
[00:28:31] But on a field trip when he was 13 years old, he's in middle school. And I said, oh, but if there's an emergency, you need to do this thing and you actually have to pull down his pants. He looked at me like I was crazy. Like, I don't know if we're comfortable doing that. And, you know, no one talks about that was just the way it was.
[00:28:49] Carole Blueweiss: Wow. That's a whole nother challenge that you had as a mom having, is that one of the twins that?
[00:28:54] Lisa Greer: Yes.
[00:28:57] Carole Blueweiss: And how have you managed that situation? My listeners might be curious if many of them maybe are dealing with, I know there's lots of kinds of epilepsy, but the one in particular that you mentioned is developed later in life. How did you start to manage that diagnosis?
[00:29:12] Lisa Greer: Yeah, it came from left field. We had no signs of it before, no anything. Kind of similar to my daughters as it just sort of happened one day and we were getting ready for a robotics competition and I didn't know why he wasn't ready to go in the morning, and I said to my daughter, his twin sister, I said, can you go check on him because it's time to go. And she came down and she said he's laying on the floor, he refuses to get up, he won't talk, and he's flopping around like a fish. And that's, of course, my mind went immediately.
[00:29:42] I didn't know a lot about epilepsy, but that part sounded familiar. And sure enough, he had had an epileptic seizure. He had fallen, tried to get out of bed, didn't know what was happening, fell against his dresser, had a concussion, and it was pretty crazy. But, because of the past situations and my husband, I knew how to work with hospitals and obviously we called an ambulance and all that kind of thing.
[00:30:02] But, the biggest thing I learned there because lots and lots of people have epilepsy and this I'd also like to tell your listeners is that first of all, we had to go to different doctors before we found the right doctor. Plus we had to have somebody who would talk to him like an adolescent, like we just talked about.
[00:30:18] It took about two years and three different doctors for us to find the right person. He then developed migraines maybe a year after that, and all of a sudden one day he just said, I can't see out of one of my eyes. And of course after having another kid with cancer, I was freaked out and turned out it was a migraine.
[00:30:33] And then there's a connection between migraines and epilepsy, but there's different doctors that handle those different parts that, so it's not just a neurologist. And so I had to learn about all the different levels of neurologists and how that all worked. But it was, it...I think having the right doctor for that was really important.
[00:30:51] Now we do most of the interactions with the doctor online, which also for a teenager is much more comfortable. He didn't want to talk at the beginning, but that's been really awesome. And also there are lots of people with epilepsy, so it's easier to find somebody to talk to about it, so that in that way it's completely different than my daughter's situation.
[00:31:09] The part that I found absolutely shocking, what I think a lot of us were told when we were younger, and you hear about epilepsy in the community, I'd always heard you put something in their mouth so they don't bite their tongue. Evidently, that's been proven to be dangerous to do, so you're not supposed to put anything in their mouth.
[00:31:24] And I thought, oh, okay. That's interesting. So sort of like, you know, when you have a baby and they say, put them on their stomach or put them on their side or whatever. So this is do not put anything in their mouth. Let them go through their thing. Just make sure they're laying down so they won't hit anything and hurt themself.
[00:31:38] So I said, okay, fine. And now I found out, what I didn't know is that when I went to his teachers, when he was in, he was like seventh grade and he was going on a field trip. And I just assumed that all of the teachers would know that because they must know basic. I mean, I think they said one out of, I think it's one out of every 20 kids or something has epilepsy, so there's gotta be many others in the school.
[00:32:02] And it turned out they didn't know that. And that really scared me that he was about to go on a field trip with different teachers. And I guess that was a faulty assumption on my part. So we had to very quickly put something together and make sure the teachers were trained. And yes, the district said they were supposed to be trained, but they weren't.
[00:32:17] And it could have caused a real problem. So for anybody who's listening who has a kid with epilepsy or knows somebody, I think it's super, super important to make sure that teachers, and if they go on a trip and field trips and those kinds of things, that they're aware of just the basics of how to protect a kid who has a seizure. And it's not complicated, it's just you need to either be told or you weren't told.
[00:32:39] Carole Blueweiss: I think what you're saying is, and it's interesting for me to hear that you don't want to assume that teachers are trained in all kinds of things that maybe aren't a typical condition. Because these days, especially with shortages of staff and training, they might not actually have it.
[00:32:56] Lisa Greer: Right. I'm allergic to shellfish. I would like to believe that every restaurant has an EpiPen or knows at least how to administer it. Or every clinic I would go to would, and I can't assume that, and I assume that people would know basics about CPR and I realized, guess what? And I think you're absolutely right, I think with the issues about staffing now, it's become even more of a concern. And so if your kid has something, you just need to find out is that something that's generally people understand at that place or they don't. So it was, it's pretty surprising to me.
[00:33:31] Carole Blueweiss: What would you like to tell healthcare workers about? Sometimes they need to hear the honest truth. And you're certainly an honest person. What do you think they could pay attention to more that maybe they're not in your experience, and maybe that's not a fair question.
[00:33:45] Lisa Greer: Well, no, I think it's funny. I was reading a story yesterday talking about people who had been patients and overheard medical staff at a hospital making fun of them, conversations they weren't supposed to hear.
[00:33:56] Or, oh, that mom's crazy, she's overdoing it with her kid. Or, oh, that kid just keeps whining and it's all fake, things like that. I had a hard time reading it myself and but then there were some other people talking, saying that this is not the norm and there's always some bad eggs. I was able to kind of put that to bed in my mind, thinking that, but because you do, when you're in a hospital with a kid, you do go all mama bear on them.
[00:34:19] That's just what people do and I don't care what they say. I don't care what they think of me. I just need to protect my kid. But that doesn't mean that you're rude to people. I had one point where my daughter was coughing a whole lot of blood, sorry to be graphic. And the nurse came in and thought I was pain in the ass, and she basically threw a towel at me and a bucket and said, here, walked away.
[00:34:37] And I was like, wow. That's incredible. So for the healthcare professionals out there, if you have patient interaction, don't do that. I think it's the same thing as what I do in fundraising. I tell people in fundraising, don't think of this other person, the donor, as an alien, and that you're somehow this other type of human, or you're the human and they're the alien, whatever.
[00:34:58] And that you can't talk to each other because you're so different. And I think it's the same thing with the medical professionals. I think that, you know, don't think of a patient as an alien. You could be the patient yourself anytime. And there's that, but that these are just humans, just like you and everybody.
[00:35:14] There's all different types of humans and there's all different types of you. But don't make assumptions in either case. Don't make assumptions about the other person because you really don't know and you don't know what the background is. You don't know what they've been through. You don't know what their level of understanding is. And the way to solve that in both working with a child in a healthcare setting and also in philanthropy is to just ask.
[00:35:37] And if the nurses just said, hey, tell me a little bit about how did this all happen, and where are you at and are you familiar with hospitals? Have you been in and out? And they'd have a little perspective of how to work with me as opposed to just assuming that you're just a pain in the butt. Something like that. I think that's a lesson for everybody to think about.
[00:35:54] Carole Blueweiss: First of all, your honesty when it comes to talking money and giving and receiving, well, I haven't had a lot of experience listening to people talk about that in such an honest way, and so I really appreciated that honesty. And I wonder how much of that in terms of the philanthropy world and giving money, is related to also the idea of developing a relationship with the people and just the idea of how important it is to really get to know the person also relates to what you're saying about getting to know your patient, even though everyone's overworked, but how important that is, that relationship.
[00:36:36] Lisa Greer: It's super important. And on the professional side, I think it makes your job more gratifying and pleasant if you have some insight into what they're about and what their experiences have been.
[00:36:45] If you ask somebody, have you had a lot of experience in a hospital like the people with the blanket, and they said, no, we really haven't. We've never been in a hospital. Our kids never been in a hospital before. Then you know they might not know that you can ask for a warm blanket, but if they say, yes, we've been in and out, you know you don't have to talk to them about blankets because of course they would know that.
[00:37:02] But how are you gonna know that if you don't ask? And philanthropy is the same thing. And how do you know that development and advancement mean that's a fundraiser? I didn't know that. But if all they had done is asked and said, have you been involved in this a long time? And I have to tell you that in both cases, medical or in philanthropy, just the fact that somebody's asking you that question and showing that they care about you in that way, that they wanna get some perspective on you to do their job better, makes you much more likely to engage with them and tell them how you feel.
[00:37:34] Carole Blueweiss: Which is half the story in terms of diagnosing sometimes and also prognosis. If you have a patient that's relaxed and trusting, there are studies that show that that goes a long way to healing faster and getting people out of the hospital quicker.
[00:37:47] Lisa Greer: This isn't rocket science, right? It seems like it's human nature, but for some reason, I think you're right, might be because people are rushed or people just don't wanna feel, they are gonna get that connected.
[00:37:56] And you always see things about homeless people and you say, how are you? Let's talk for a moment. That's priceless. And so I think medical professionals, and I think that fundraisers should do the same thing. I suggested in a lot of articles during Covid have the fundraisers just call some of these people or send them an email and say, how are you really, how are you doing during Covid? And that's it. Not give me money, please now, but how are you doing?
[00:38:18] And that makes me as a donor much more likely to wanna give them money. And if somebody says in a hospital, how are you doing, mom? That means a lot to me. And that does happen sometimes and every single time it happens, I just love it. I'm like, oh boy, I feel a connection to this person. They really care.
[00:38:34] Carole Blueweiss: That's why I think the book is so revelatory that if someone actually really sincerely is curious about you and wants to know more, that that goes a long way for what you're trying to do with them, whether it's healing or asking for something.
[00:38:48] Lisa Greer: That's right, and I hope that's something that everybody's hearing because I think it's really important. All sorts of things will run better if people just think about taking a moment and asking.
[00:38:57] Carole Blueweiss: It was very nice to read about the place in Los Angeles where you're very involved. Cedars-Sinai?
[00:39:03] Lisa Greer: A lot of this research is done at Cedars and other hospitals. They're coming up with all sorts of interesting things. The department that we founded, the research lab, started with one person. It now is 25 full-time people, and they created all sorts of personalized medicine. It's pretty exciting.
[00:39:18] Carole Blueweiss: Is there anything I haven't asked you that you'd like me to ask or that you'd like to say?
[00:39:21] Lisa Greer: I don't think so, but this has been really interesting, so thank you so much. I have not had a conversation like this before, so it's been really awesome.
[00:39:30] Carole Blueweiss: For me, too. This has been awesome. Thank you so much for joining me on Wisdom Shared.
[00:39:38] If anybody wants to get in touch with you, what's the best way to do that?
[00:39:42] Lisa Greer: The best way is just to go to lisagreer.com, L I S A G R E E R .com, and that has previous podcasts on it. It shows how to sign up for our newsletter. It tells you how to get the book, how to get in touch with me, all those kinds of things. So that is probably the easiest way of all.
[00:39:58] And if anyone's interested in the philanthropy side, my website, my blog, a newsletter is at philanthropy451.com, and you can just sign up there. And then for the other non-profit things, myFace, it's myface.org and, and also these foundations, Crohn's and Colitis Foundation, the Epilepsy Foundation, they have lots and lots of resources and information that's really good.
[00:40:25] Carole Blueweiss: I hope you enjoyed that episode as much as I did. While editing this episode and the introduction, my mother went to the hospital and I had all of Lisa's ideas in my head. Reflecting on what Lisa shared with me in the interview, I thought about how my experience was with my mother in the hospital.
[00:40:45] Honestly and gratefully, our hospital experience went just how Lisa would've envisioned an ideal hospital experience to go. One that showed caring, listening, transparency, and connection. The physicians assistants, the nurses, the RNs, the doctors, the transport team, the people who came to clean the room, and the people who came to bring the food, all of them paid attention to my mom.
[00:41:10] They asked my mother how she was doing. They seemed to really care. And the different medical teams introduced themselves to me and asked me questions, and I could tell they were listening. They explained things very clearly about what was going on with my mother, and they wanted me to understand, so I knew exactly what Lisa was talking about when it actually works and how it makes you feel when the medical staff ask you, how do you feel? What is going on? Tell me a story about yourself.
[00:41:38] And that's exactly what the staff at New York Presbyterian Hospital did with my mom. This not so rocket science made all the difference in the world. Some of my other takeaways from this episode are health trauma doesn't stay buried in the past. It stays with you.
[00:41:55] It's important to find the right doctor. Online resources and support can be helpful, but it can also be very confusing. The healthcare atmosphere can be intimidating, but it shouldn't stop you from asking what you need and what you want. Transparency is the currency of trust, and that applies across all realms.
[00:42:17] How you treat people has a lasting impression. Making a human connection is the most important thing anyone can do, whether it's asking someone for a donation or treating them in the hospital.
[00:42:34] Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to careoleblueweiss.com or wherever you listen to podcasts. If you like what you're hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.