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Migraine Pain and The Power of Self Advocacy with Alice W. Meadows · The Menopause Disruptor Podcast

• 0:00
  SPEAKER_00: I was mad at my body for my whole life.
• 0:04
  SPEAKER_00: And you can imagine what that's like.
• 0:07
  SPEAKER_00: And it permeates every cell, you know.
• 0:10
  SPEAKER_00: And backing up a little bit, I had the doctor when I was a child, a doctor tell me no one gets that many headaches.
• 0:18
  SPEAKER_00: So I never went back to see a doctor for headache diagnosis until I was 22.
• 0:24
  SPEAKER_00: And when I was 22, I was diagnosed with thyroid cancer.
• 0:28
  SPEAKER_00: So I did the same thing with that.
• 0:30
  SPEAKER_00: I just I dismissed it.
• 0:32
  SPEAKER_00: I got the treatment that I needed, the surgery, the radiation, but I shoved it down.
• 0:38
  SPEAKER_00: I disconnected from it.
• 0:40
  SPEAKER_00: It starts with not being believed when you're young, or maybe for your listeners, there's some other fundamental thing that happened when they were young.
• 0:49
  SPEAKER_00: And by the time they get to menopausal age, they're wondering like, what's wrong with me?
• 0:56
  Mary Lee: Hey listeners, welcome back.
• 0:58
  Mary Lee: If you're new here, thank you.
• 1:00
  Mary Lee: Thank you for finding me.
• 1:01
  Mary Lee: Thank you for joining us.
• 1:02
  Mary Lee: Today's conversation isn't something so many women can relate to.
• 1:06
  Mary Lee: What happens when your body is telling you something is wrong, but you don't have the language to explain it.
• 1:13
  Mary Lee: And sometimes the people around you don't understand it either.
• 1:18
  Mary Lee: My guest today is Alice W.
• 1:20
  Mary Lee: Meadows.
• 1:21
  Mary Lee: She's the author of Mabel and her bright, noisy, prickly, dizzy migraine.
• 1:27
  Mary Lee: She is very much an advocate for migraine health and a longtime migraine sufferer herself, who has turned her own experience into a powerful tool for connection and advocacy.
• 1:39
  Mary Lee: Alice's book is a beautifully illustrated story that gives children something incredibly important.
• 1:46
  Mary Lee: The words, the language for that invisible pain they are suffering from.
• 1:51
  Mary Lee: But Alice's work goes far beyond migraines.
• 1:54
  Mary Lee: Her writing has opened up a much bigger conversation about invisible illness, disability, empathy, accommodations, and self-advocacy, and what it really means to support someone when you can't see what they're experiencing.
• 2:10
  Mary Lee: I was particularly drawn to Alice's perspective on writing as healing, connection, and of course, advocacy, because I believe there is an enormous power in telling the stories our bodies have been trying to tell us for so long.
• 2:26
  Mary Lee: So whether it's migraine, menopause, or even a chronic illness, or neurodivergent or other invisible experience, there can be an incredible sense of relief when someone finally says, yes, that thing you're experiencing, it has a name and you're not imagining it.
• 2:44
  Mary Lee: So today we're going to talk about migraines.
• 2:46
  Mary Lee: We're going to also talk about much deeper issues, and that is being believed, learning to advocate for yourself, supporting children with invisible conditions, and what happens when we find the language to make the invisible suddenly visible.
• 3:01
  Mary Lee: You are going to be blown away when you learn a little bit about Mabel, the protagonist in Alice W.
• 3:07
  Mary Lee: Meadows' very first book.
• 3:10
  Mary Lee: But before we get into this conversation, here's something you need to know about Alice W.
• 3:14
  Mary Lee: Meadows.
• 3:15
  Mary Lee: Alice is a mother of two and a grandmother to three.
• 3:19
  Mary Lee: She's married to her college sweetheart.
• 3:22
  Mary Lee: She shares so much of her writing and her journey into advocacy work on her Substack platform, which you can find at Alice W.
• 3:31
  Mary Lee: Meadows One.
• 3:32
  Mary Lee: And her book, Mabel and Her Bright, Noisy, Prickly, Dizzy Migraine, is set to be published this November.
• 3:40
  Mary Lee: Please join me in welcoming Alice W.
• 3:42
  Mary Lee: Meadows to the Menopause Disruptor Podcast.
• 3:46
  Mary Lee: Welcome, Alice.
• 3:47
  Mary Lee: Thrilled to have you here.
• 3:49
  SPEAKER_00: Thank you so much for inviting me.
• 3:51
  SPEAKER_00: I'm so happy to be here.
• 3:53
  Mary Lee: Before we begin diving into your book, tell us a little bit more about your relationship with migraines.
• 3:59
  Mary Lee: And when did you first realize that this was going to be a major part of your life?
• 4:04
  SPEAKER_00: I first realized when I was a young child in elementary school, when I had to leave my classroom and be picked up from school early.
• 4:15
  SPEAKER_00: And looking back now, I can call it my Pepto Bismol story.
• 4:20
  SPEAKER_00: And I call it the Pepto Bismol story because I remember being escorted out of classroom to the nurse's office when they had such a thing.
• 4:29
  SPEAKER_00: And um they had the like these small cubbies, and inside the cubby was a Pepto Bismol pink vinyl couch.
• 4:37
  SPEAKER_00: So I was put there with a bucket while I waited for my parents to pick me up because luckily I didn't vomit on the way out of the classroom, as I remember.
• 4:46
  SPEAKER_00: But my main symptom was a stomachache.
• 4:49
  SPEAKER_00: I don't remember the head pain.
• 4:51
  SPEAKER_00: And the other thing I remember about that is that I felt the stares of my classmates that somehow I was lucky to be going home from school early.
• 5:01
  SPEAKER_00: So that that's what started this migraine journey.
• 5:05
  SPEAKER_00: And it's also what inspired me to write this children's book.
• 5:08
  Mary Lee: So let's take us in that journey, writing your children's book, Mabel and her bright, noisy, prickly, dizzy migraine.
• 5:18
  Mary Lee: So you were saying that your experience living with migraine and realizing that this was almost like an invisible condition that you wanted to bring language to.
• 5:27
  Mary Lee: Tell us all about how that became an important piece of your work now as a writer.
• 5:34
  SPEAKER_00: So it's a silly name, but it describes the various symptoms that migraine sufferers experience.
• 5:41
  SPEAKER_00: There's a myth that migraine is just a headache, and it is not, it's a complex set of neurological conditions.
• 5:49
  SPEAKER_00: And each of the characters that I created for the book represents a different symptom.
• 5:54
  SPEAKER_00: For example, Madame Aura, which is one of the more well-known symptoms, represents the flashing lights that some of us see, the bright lights.
• 6:04
  SPEAKER_00: And Senor Megranos, he's beating the drums, and some of us are really sensitive to loud noises.
• 6:11
  SPEAKER_00: We can be sensitive to odors or touch some of us.
• 6:16
  SPEAKER_00: And a barren bellyache, of course, is the nauseousness and the vomiting.
• 6:21
  SPEAKER_00: So these characters are intended to give very young children language to communicate to their parents and caregivers what they're feeling instead of having to describe that they feel dizzy or they feel they can't stand that the sound hurts, for example.
• 6:39
  SPEAKER_00: The intent is for the child and the parent to read the book together.
• 6:44
  SPEAKER_00: On the flip side, I raised two daughters, and I wish I had a book like this to read to them so that they could understand better why I was retreating to a dark room and I could explain to them this is what I'm feeling and show them through reading the book when they were young, this is what I'm feeling.
• 7:08
  Mary Lee: Children, as you said, they don't always have this language.
• 7:10
  Mary Lee: So using the sensory language to help pinpoint what the experience is for children, and that they don't always understand.
• 7:18
  Mary Lee: I would presume, correct me if I'm wrong, that something is wrong with my nervous system, very much akin to menopause as well.
• 7:26
  Mary Lee: Um, that there's changes in the body that are keeping us overstimulated, and we just can't figure out a way to comprehend it, let alone find solutions for it.
• 7:37
  Mary Lee: What happens when we do give children that language for their experiences that they couldn't previously explain?
• 7:47
  SPEAKER_00: So let's back up a bit before we give the children the language, and I can give you a little bit more insight into the book.
• 7:55
  SPEAKER_00: One of the things that happened is I was not believed.
• 7:59
  SPEAKER_00: I was not believed by my parents, I was not believed by my teachers.
• 8:04
  SPEAKER_00: It was I was told that I was lazy, that I just wanted to skip school, which was a silly notion because I loved school.
• 8:13
  SPEAKER_00: I was always an excellent student.
• 8:15
  SPEAKER_00: I'd rather be at school than at home, to be honest with you.
• 8:20
  SPEAKER_00: I was not lazy.
• 8:22
  SPEAKER_00: Many young children are accused of being lazy.
• 8:26
  SPEAKER_00: The rumor got around amongst my four siblings that I was lazy, I was not doing my chores, they were having to do my chores.
• 8:34
  SPEAKER_00: Migraine makes you feel very ill sometimes for days.
• 8:39
  SPEAKER_00: And that really does something to your self-esteem.
• 8:43
  SPEAKER_00: So from a very young age, you feel like you're not validated.
• 8:48
  SPEAKER_00: And I can tell you, when I was looking through some of your guests and some of the work that you do, I recognized that it wasn't until I got to perimenopause and menopause that I was able to shift some of those beliefs.
• 9:04
  SPEAKER_00: And I'll explain a little bit later how that happened.
• 9:08
  SPEAKER_00: But um what happened was I learned to hide the symptoms because all I got a lot of negative feedback, so I dissociated from my body and I said there's something wrong with me.
• 9:22
  SPEAKER_00: I'm gonna hide what's happening, I'm not gonna tell anybody about it.
• 9:27
  SPEAKER_00: I didn't tell doctors about it.
• 9:30
  SPEAKER_00: Uh and it's an invisible illness, so it's kind of easy to hide.
• 9:35
  SPEAKER_00: Um how terrible that is.
• 9:39
  SPEAKER_00: You're betraying your own body.
• 9:42
  SPEAKER_00: And when you dissociate, you cut yourself off at the neck.
• 9:45
  SPEAKER_00: One doctor told me I was a talking head that um you know, and with migraine, because it's your head is throbbing, it's a bit of a magic trick to be able to do that.
• 9:58
  SPEAKER_00: But you can you're living half a life, sort of.
• 10:01
  SPEAKER_00: You have the pain over here, and you have your life over there.
• 10:06
  SPEAKER_00: It's not a way to live, but it's it is a a common coping mechanism.
• 10:11
  Mary Lee: And you had said having that invisible condition, uh, affecting the confidence, affecting your own body, your own perceptions about self.
• 10:22
  Mary Lee: And this is, as you said, one of the themes that I often explore with my guests frequently on this podcast is the experience of knowing that something is happening in your body before we have the language, before we have the validation, and of course, a diagnosis or evidence to explain it.
• 10:41
  Mary Lee: Obviously, that was your experience with migraine, but how important then becomes the role of advocacy?
• 10:49
  Mary Lee: First of all, how what has advocacy taught you and how is that translated now through your own perimenopause and menopausal experience and for women and children in general?
• 11:02
  SPEAKER_00: So it took a long time to come to advocacy, I could tell you.
• 11:06
  SPEAKER_00: It was only been the last couple of years because it took a long time to knit my body and my brain back together.
• 11:15
  SPEAKER_00: It's quite a process, and I'll tell you, it was Christiane Northrop's book, The Wisdom of Menopause, that really set me on that path when she wrote about how the brain goes through restructuring during that period of menopause.
• 11:30
  SPEAKER_00: And I think that's what happened with me partly my brain um reconnected with my body.
• 11:39
  SPEAKER_00: And even though I was going through menopausal symptoms that were unpleasant, at least I felt them and I hadn't felt them.
• 11:48
  SPEAKER_00: But I also felt great of depression and despair because through my life I'd been it had been suggested, well, many women stop having migraine when they get to menopause.
• 12:01
  SPEAKER_00: But unfortunately for me, mine were not hormonal, so they kept going.
• 12:06
  SPEAKER_00: So I I went through a big grieving period over that.
• 12:10
  SPEAKER_00: But during menopause, I think is when I reconnected with my body and I stopped being mad at it.
• 12:17
  SPEAKER_00: I was mad at my body for my whole life.
• 12:21
  SPEAKER_00: And you can imagine what that's like, and it permeates every cell, you know.
• 12:26
  SPEAKER_00: And backing backing up a little bit, I had the doctor when I was a child, a doctor tell me no one gets that many headaches.
• 12:35
  SPEAKER_00: So I never went back to see a doctor for headache diagnosis until I was 22.
• 12:42
  SPEAKER_00: And when I was 22, I was diagnosed with thyroid cancer.
• 12:45
  SPEAKER_00: I did the same thing with that.
• 12:47
  SPEAKER_00: I just I dismissed it.
• 12:49
  SPEAKER_00: I got the treatment that I needed, the surgery, the radiation, but I shoved it down.
• 12:55
  SPEAKER_00: I disconnected from it.
• 12:57
  SPEAKER_00: It starts with not being believed when you're young, or maybe for your listeners, there's some other fundamental thing that happened when they were young.
• 13:06
  SPEAKER_00: And by the time they get to menopausal age, they're wondering like, what's wrong with me?
• 13:12
  Mary Lee: Alice, you've touched on a really tender issue.
• 13:16
  Mary Lee: So many women are going to be nodding their heads too right about now as they're listening.
• 13:21
  Mary Lee: That is the denial we place on ourselves because there's no language for it, there's no diagnosis for it.
• 13:30
  Mary Lee: What it comes down to is that we're not being believed and we're told, get on with it.
• 13:37
  Mary Lee: And so that that denial of ourself, our body is trying to communicate something to us through pain, which is biologically designed pain to say, hey, let's take a look at this.
• 13:50
  Mary Lee: But it's the the complicated layers of what that might be.
• 13:54
  Mary Lee: Yours being thyroid cancer, other women, it could just simply be an ace, an adverse childhood experience, and then trying to fit our lives into what society deems is normal.
• 14:09
  Mary Lee: This is the way you should be.
• 14:11
  Mary Lee: And so we just keep suppressing and suppressing.
• 14:13
  Mary Lee: Then comes menopause, the time, and I say it all the time, the time of the great reveal, revealing to us all those things that we've buried, lied about ourselves, shelved away, pushed aside, pretended, faked ourselves through it, fake it till you make it literally.
• 14:33
  Mary Lee: But estrogen saying, poof, I'm gone.
• 14:36
  Mary Lee: You're on your own.
• 14:37
  Mary Lee: And so I'm really curious now when you had this discovery, discovering the thyroid cancer and putting all the pieces.
• 14:47
  Mary Lee: First of all, was it a matter of putting all those pieces together and realizing ah, it was a combination of this experience and not listening to my own body that has revealed to me something that should have been treated or listened to and never denied all along?
• 15:07
  Mary Lee: Tell us about that.
• 15:08
  Mary Lee: That great reveal, if you will.
• 15:10
  SPEAKER_00: I'm a complicated case because I had extreme dysfunction in my family.
• 15:16
  SPEAKER_00: So there was a lot of layers that I had to go through.
• 15:20
  SPEAKER_00: And I spent really most of my adult life trying to work through those.
• 15:29
  SPEAKER_00: In addition to the physical, which I I know that trauma manifests physically.
• 15:36
  SPEAKER_00: I have no doubt that that is ingrained in the migraine.
• 15:39
  SPEAKER_00: And I tried to work to get some of that you know stress and trauma out so that I can feel better about that.
• 15:50
  SPEAKER_00: But standing from this vantage point, the great reveal has been that I never put myself first.
• 15:59
  SPEAKER_00: I think that's been the biggest insight that I've been so busy trying to make sure that other people were comfortable, that I didn't step on other people's toes, that I didn't inconvenience other people, that it was to my own detriment.
• 16:16
  SPEAKER_00: I think that was something that and that I couldn't keep doing it.
• 16:19
  Mary Lee: Yes.
• 16:20
  Mary Lee: I just I'm putting my hand on my heart because I just feel that angst, that pain, and that sorrow of not only I don't recognize myself, but I don't like myself kind of language.
• 16:32
  Mary Lee: It's just so, so damaging.
• 16:35
  Mary Lee: And there's such an intersection between migraine and menopause for many women.
• 16:41
  Mary Lee: And of course, yes, many women are told that this is what they're experiencing is not normal, or it'll just go away, or we're imagining things.
• 16:53
  Mary Lee: And uh it just pains me to understand this in the context of migraine as well.
• 17:00
  Mary Lee: And then you add the both women who migraine being one of the symptoms women will experience when they're going through menopause.
• 17:07
  Mary Lee: But what would you say women should know about their experience, be it menopause or migraine, that they should understand about their hormone transition so that they can advocate for their for themselves?
• 17:22
  SPEAKER_00: I think so.
• 17:23
  SPEAKER_00: First I started advocating and I did do some training with some migraine groups.
• 17:28
  SPEAKER_00: I'm involved in another training.
• 17:30
  SPEAKER_00: I first did it for selfish reasons because I realized you have to come to the realization that you're worth standing up for.
• 17:38
  SPEAKER_00: I wasn't advocating for myself with my doctors at all.
• 17:41
  SPEAKER_00: I was just accepting whatever they would say.
• 17:44
  SPEAKER_00: Let's try this medication or that protocol or whatever.
• 17:48
  SPEAKER_00: But it's really been helpful for me to be involved in trying to advocate for other people.
• 17:54
  SPEAKER_00: And I realized that children were an underrepresented group to advocate for, which is one of the reasons also that I wrote the book.
• 18:02
  SPEAKER_00: So I think, you know, being part of a group and advocating as a group for others, joining your voice with others and not just trying to do it by yourself.
• 18:14
  SPEAKER_00: In the end, you help yourself.
• 18:16
  Mary Lee: So true.
• 18:17
  Mary Lee: We help ourselves by helping others.
• 18:20
  Mary Lee: I do like the intersection too that advocating for children and schools and accommodations.
• 18:25
  Mary Lee: I'd like to talk about that because we, when we talk about accommodations in the context of menopause, we're talking about workplace accommodations in the schools where accommodations for children who are suffering migraines or other illnesses, disabilities, even neurodivergent traits was not commonplace.
• 18:42
  Mary Lee: Now we're trying to advocate for the same for menopause and women needing just that extra time to gather themselves, to adjust schedules.
• 18:51
  Mary Lee: So, how do we move away from accommodations being perceived as special treatments, air quotes, to an understanding that these are tools to allow someone to continue to participate, to continue to thrive, excel, and be productive?
• 19:19
  SPEAKER_00: So I think we as a society have to move towards more empathy.
• 19:26
  SPEAKER_00: And one of the goals I have with this book is to take it into schools and to libraries and use it to talk about empathy, especially for invisible illnesses.
• 19:37
  SPEAKER_00: It's easy to be empathic to a child who's on crutches or in a wheelchair, but for people with who are going through menopause or people with migraine when you can't see what's going on with them.
• 19:50
  SPEAKER_00: You become judgmental and say they're just being dramatic or something like that.
• 19:57
  SPEAKER_00: But start in the young age groups and talk about it with them.
• 20:05
  SPEAKER_00: That that's the way through that I see.
• 20:07
  SPEAKER_00: It seems to me it's it's not hard, but for some people maybe it is.
• 20:11
  SPEAKER_00: But I think starting with the young kids and generating an atmosphere of empathy and saying, you know, some people need a little extra time to complete assignments, some people need to work in a room that's not so brightly lit.
• 20:25
  SPEAKER_00: And people are different and they just need to work in different ways.
• 20:29
  SPEAKER_00: It's not so hard to understand.
• 20:31
  Mary Lee: The empathy, yeah.
• 20:33
  Mary Lee: Seek first to understand before being understood has always been one of my mottos to live by.
• 20:38
  Mary Lee: And you mentioned creating that empathy and creating community, talking amongst yourself, or in many contexts, so you can see that as a peer support network, be it in a school or be it in the workplace.
• 20:51
  Mary Lee: Exactly.
• 20:52
  Mary Lee: One of the things that I was really drawn to to have you here with me today, Alice, is the fact that you are not just a writer who wrote a children's book to bring some language to migraines and help them to understand their experience and accepting an almost playful, characteristic language.
• 21:12
  Mary Lee: But I had gone to your Substack to look at some of your writings.
• 21:19
  Mary Lee: It's been, and before we hit record, I want my listeners to know that I was sharing with Alice this desire to get back into writing, something that I had pursued or thought I would pursue when I was in my early 20s.
• 21:33
  Mary Lee: And we spoke about Julie Cameron's book, The Artist's Way, which is a great tool, a great book to help anybody who wants to explore their creativity, be it writing.
• 21:42
  Mary Lee: But one of the things that I was drawn to, Alice, on your substack was the article about being terrified, about fear to start writing.
• 21:51
  Mary Lee: Writing is so cathartic.
• 21:52
  Mary Lee: And a lot of women, in line with the Great Reveal, want to tell a story.
• 21:57
  Mary Lee: They want to release something.
• 21:59
  Mary Lee: And storytelling is such a profound way to share that experience, just to get it out and share it with the world without the judgment, without being Seen as being different, just to share.
• 22:12
  Mary Lee: This is who I am.
• 22:13
  Mary Lee: And I have had previous guests who have written their memoir in light of storytelling as a way to help other women.
• 22:21
  Mary Lee: But then there's the fear.
• 22:23
  Mary Lee: Fear gets in the way.
• 22:24
  Mary Lee: And in particular, I love how you talk about bears, the fear of bears.
• 22:30
  Mary Lee: Could you share with our listeners a little bit about the context of that Substack article and how that could relate to overcoming any fear that we might have in midlife as we explore a new creative venture to deal with our menopause and to reveal to the world who we're recoming in our midlife experience?
• 22:53
  SPEAKER_00: Sure.
• 22:53
  SPEAKER_00: So I start out with a little story that I'm terrified of bears.
• 22:57
  SPEAKER_00: It's what I'm most afraid of.
• 22:59
  SPEAKER_00: And that I've read every article on how to defend yourself against a bear attack.
• 23:04
  SPEAKER_00: But I guess if I actually came again up against a bear, I'm not sure I would be able to do any of the things that I read about.
• 23:12
  SPEAKER_00: But then the real part of the article is I think it was releasing a book into the publishing world, which is very scary because you lose control over it.
• 23:22
  SPEAKER_00: It's no longer yours.
• 23:23
  SPEAKER_00: So as long as I'm writing it and editing it, it's mine and I own it, and no one can criticize it.
• 23:31
  SPEAKER_00: And the way the writing goes is, you know, you can have different goals for it.
• 23:35
  SPEAKER_00: You can journal, you can keep it just private for yourself.
• 23:39
  SPEAKER_00: But it came a point in my writing that not that I thought it would, I never thought it was good enough.
• 23:46
  SPEAKER_00: Most writers will never say their writing is good enough.
• 23:50
  SPEAKER_00: We always have our doubts, but what I guess pushes us over the edge to um press publish is we want to join a conversation, we want feedback, and if you don't put it out there, you can't get any feedback from someone else or the desire to help someone.
• 24:08
  SPEAKER_00: And if you don't put it out there, you know, maybe there's someone that needs to hear what you say, and you know, it's not going to be perfect because there is no perfect.
• 24:18
  SPEAKER_00: It's always just a little nerve-wracking when you press publish, but you know, it's just so gratifying if you get comments back saying I really needed to hear this, or you know, what do you think about this?
• 24:29
  SPEAKER_00: So that offsets the fear in the end.
• 24:32
  Mary Lee: And I also find that being vulnerable and sharing our story, and as Brene Brown says, it you it takes courage to be vulnerable.
• 24:43
  Mary Lee: It's one of the bravest acts we can do.
• 24:45
  Mary Lee: And writing and sharing our story is whether it's our story or a piece of fiction, as you said, is like the criticism.
• 24:54
  Mary Lee: What will people think?
• 24:56
  Mary Lee: But it's such a big act of selflessness, because I and I love what you said, we would need to start a conversation.
• 25:06
  Mary Lee: It makes me think that it truly is.
• 25:08
  Mary Lee: We're we're part of a bigger piece.
• 25:11
  Mary Lee: We are only one little element, but we're all in this together.
• 25:17
  Mary Lee: And so when one person can share, that can spark an idea or give a solution to another person, and as you said, start that conversation.
• 25:28
  Mary Lee: For you, Alice, when you were ready to release your book, your children's book, what was the final pushing point to get you to hit publish, if you will?
• 25:39
  SPEAKER_00: Well, getting the endorsement from my neurologist was one of the things.
• 25:45
  SPEAKER_00: But as far as the actual book goes, I wanted to, I was not the illustrator, I can't draw stick figures, but making sure that the illustrations represented what was in my head.
• 25:57
  SPEAKER_00: My illustrator who I met walking dogs on the beach where I live, she does not suffer from migraine.
• 26:05
  SPEAKER_00: So getting her to understand what I was describing took a lot of doing.
• 26:11
  SPEAKER_00: And she did a great she did a great job.
• 26:14
  SPEAKER_00: She did a great job translating it to the page.
• 26:16
  SPEAKER_00: But I think it was once we were laboring over one particular character, it was Baron Belliache carrying a a cane where and he pokes uh Mabel the elephant in the belly, and we were discussing what was going to be at the end of the cane, at the bottom of the cane, because I didn't want it to be scary for a child, I didn't want it to be pointy, and we ended up making it a radish.
• 26:43
  SPEAKER_00: So it was trying to figure out what was going to be on that.
• 26:46
  SPEAKER_00: So I think that was it.
• 26:47
  SPEAKER_00: Once we got the characters right, that was the last thing.
• 26:52
  Mary Lee: On a bigger note, though, what has writing done for you, Alice, as you've gone through your transition and you've grown up with migraines and have had to learn your own self-advocacy, translating in that advocacy into helping others.
• 27:56
  Mary Lee: What did writing finally mean for you?
• 28:01
  SPEAKER_00: Writing has meant a lot.
• 28:02
  SPEAKER_00: First of all, I can tell you that I wrote a good portion of Mabel while having a migraine attack, which it did a couple of things.
• 28:11
  SPEAKER_00: First of all, when I'm writing, when I'm really involved in writing, I can dissociate, as I told you before, in a good way though, put the put the pain aside and really go into the flow state with the writing.
• 28:26
  SPEAKER_00: So it gives me some relief from the pain.
• 28:29
  SPEAKER_00: But I also was able to better imagine the characters because I was able to sense them better, not just not just see them, but I could sense them better.
• 28:39
  SPEAKER_00: So I could create them better.
• 28:41
  SPEAKER_00: It helped with the creativity.
• 28:43
  SPEAKER_00: So that's why I say that uh writing is healing, because I think when you're doing anything that you love, it distracts you from something that's you know unpleasant, right?
• 28:55
  SPEAKER_00: I've always journaled and that's been a way of working out things that have happened in my life that haven't been so happy, and it's also been a way of keeping track of things that have been happy.
• 29:08
  SPEAKER_00: I unload them out of my brain onto the page, and then I don't have to carry them around.
• 29:13
  SPEAKER_00: I may not do anything with it, but it's no longer baggage.
• 29:17
  SPEAKER_00: That's worked really well for me.
• 29:19
  Mary Lee: I'm presuming that writing Mabel is based on your own childhood experiences, and there's there's a little bit of Alice and Mabel or Mabel and Alice.
• 29:28
  SPEAKER_00: Oh, there's a lot of Alice and Mabel.
• 29:30
  SPEAKER_00: There is a lot, and uh and Mabel is my ambassador, so she's gonna be out front and center trying to get my message of advocacy for children out in the world.
• 29:42
  Mary Lee: Beautiful.
• 29:43
  Mary Lee: How well received has the book been now since you've published it?
• 29:47
  Mary Lee: Is are you well?
• 29:48
  SPEAKER_00: It's not actually published yet.
• 29:50
  SPEAKER_00: It comes out November 10th.
• 29:52
  SPEAKER_00: There's been a delay, it was supposed to be out this week and it's it's been delayed.
• 29:56
  SPEAKER_00: So I'm trying to talk it up and I have the digital copy of it, which is which looks great.
• 30:02
  SPEAKER_00: So I can't wait to see it in person.
• 30:05
  Mary Lee: Oh, wonderful.
• 30:06
  Mary Lee: Well, we'll be sure to really push come November 10th.
• 30:09
  Mary Lee: This podcast will be really started around that time.
• 30:12
  Mary Lee: So this is beautiful timing.
• 30:14
  Mary Lee: In terms of let's just forecast ahead, how do you see that this book be a powerful tool to get into the hands of parents and maybe even into schools and libraries to help families, children, siblings, and parents support each other through this journey of dealing with migraines and healing and advocacy.
• 30:41
  SPEAKER_00: I think it of it more as a tool for communication and education.
• 30:48
  SPEAKER_00: And I also, this is my wish, and my publisher says she would be so proud of me if I can get this done, but I always wanted to get it into the hands of pediatric neurologists because I thought it would be lovely if when they hand the parents a package of information that they could hand the child my book so that they have something to look through.
• 31:12
  SPEAKER_00: And so I know a pediatric neurologist, secondhand.
• 31:17
  SPEAKER_00: I know him, and I'm trying to get in touch with him and see how that process might work.
• 31:23
  Mary Lee: That would be absolutely fantastic because this is a language that you're using that is probably far more powerful than any medical terminology and the power of storytelling to communicate effectively what the child is experiencing.
• 31:40
  SPEAKER_00: Exactly.
• 31:41
  SPEAKER_00: This child just sat through language that went like this, you know, the doctor's talking to the parent, and I just think that it would be nice to be able to give him or her a book.
• 31:53
  SPEAKER_00: So Mabel has a lot of responsibility, and we'll we'll see how much she can get done.
• 32:01
  Mary Lee: Do you envision there being anything else coming out on the heels of Mabel?
• 32:07
  SPEAKER_00: I would like to do other children's books.
• 32:10
  SPEAKER_00: I mean, I have I have some in mind.
• 32:12
  SPEAKER_00: Mabel could go to school, Mabel could, you know.
• 32:16
  SPEAKER_00: I mean, children miss out on birthday parties and sports and all kinds of things, and they they don't make plans because they're afraid they're gonna have to cancel them, and or they do make plans and they have to cancel them and they miss them.
• 32:29
  SPEAKER_00: There's all sorts of directions it could go, but for now, I've committed myself to a trilogy.
• 32:35
  SPEAKER_00: The first novel is called Tentatively Amber Wave, and it has to do with surviving Hurricane Ian, which which flooded my island in 2022.
• 32:46
  SPEAKER_00: It's a novel about surviving that hurricane.
• 32:49
  SPEAKER_00: So I'm well into the the first draft of that, and I was well into the first draft of that when this book wouldn't leave me alone, so I wrote it first.
• 33:00
  Mary Lee: I'm really curious, Alice, as a novelist of children's books.
• 33:03
  Mary Lee: Yes, you speak about Mabel very much being a part of you, your story.
• 33:09
  Mary Lee: Was there other inspiration that came to you that it was you just knew I've got to put this in writing, and it has to be in the format of a children's book.
• 33:22
  Mary Lee: It was like an epiphany, divine inspiration, divine intervention.
• 33:29
  SPEAKER_00: It it really just came to me.
• 33:31
  SPEAKER_00: Um, I was doing some advocacy training with a group called Miles for Migraine, which is a is an advocacy group, and we were to prepare like a graduation project, if you will, and most of the students did like organizing 5k races to raise money, or you know, marching on Capitol Hill to raise money or change laws or accommodations.
• 33:58
  SPEAKER_00: That's not me, and then I said, Well, I can write, and it it really just came to me, and I pitched the idea at the last session, and everybody loved it.
• 34:09
  SPEAKER_00: So that's how Mabel came into being, and I knew I wanted to have a family of elephants because they are closely bonded in the wild, and everybody loves elephants, so family came to be beautiful, Alice.
• 34:26
  Mary Lee: I'm really just in awe of who you are as a writer today, and you say it beautifully on your Substack, and I'm just gonna read it out so that the listeners know what I'm referring to.
• 34:41
  Mary Lee: Um, where you say, why subscribe to my newsletter?
• 34:44
  Mary Lee: And I love how you put this.
• 34:45
  Mary Lee: I'm writing from my 60s, a time of earned perspective and deliberate choices.
• 34:53
  Mary Lee: This Substack is about aging as an opening rather than a closing.
• 34:58
  Mary Lee: Ugh, amen to that.
• 34:59
  Mary Lee: Where these choices can be made with intention.
• 35:02
  Mary Lee: There is no longer a need to rush.
• 35:05
  Mary Lee: It is about taking a lifelong passion for writing and transforming it into a second career.
• 35:11
  Mary Lee: It is about opening up my imagination to add color to my accustomed analytical approach.
• 35:18
  Mary Lee: This almost brings tears to my eyes.
• 35:20
  Mary Lee: This is so powerful.
• 35:23
  SPEAKER_00: Well, I'm glad you like it.
• 35:25
  Mary Lee: The reason why I'm drawn to it is because that, you know, let alone my experience, but women that I know that are close to me, be it colleagues, friends, even women that I've coached, are also experiencing this opening, but this lifelong passion, like it's pulling on the heartstrings.
• 35:46
  Mary Lee: And yeah, so it what would you what advice would you give to these women who are feeling this experience now?
• 35:56
  Mary Lee: Just to not only just don't rush, but don't be afraid to jump in with that to that passion.
• 36:05
  SPEAKER_00: Let yourself try a lot of different things, let yourself be creative.
• 36:10
  SPEAKER_00: I a lot of this has to do with letting the creative force take over.
• 36:15
  SPEAKER_00: I mean, my former profession was in finance and economics, and how different that is for from what I'm doing now.
• 36:24
  SPEAKER_00: And many of the women, maybe that you coached, did have those kind of backgrounds.
• 36:29
  SPEAKER_00: But let the creative force take over, try different things, try different, like the artist way, that kind of thing.
• 36:37
  SPEAKER_00: Try those different things.
• 36:38
  SPEAKER_00: Allow yourself to paint or color or do something that you normally would not do and see if you like it.
• 36:47
  Mary Lee: Give yourself permission to play.
• 36:49
  SPEAKER_00: Exactly.
• 36:50
  SPEAKER_00: That's a good way to put it.
• 36:52
  Mary Lee: I always like to finish off the conversation with something a little bit more intuitive.
• 36:59
  Mary Lee: You've shared a lot about who you are, Alice, but I have a bunch of rapid-fired questions.
• 37:03
  Mary Lee: And again, I've taken that idea from one of my favorites.
• 37:07
  Mary Lee: Okay.
• 37:07
  Mary Lee: Renee Brown is one of my favorites, and she she does.
• 37:11
  Mary Lee: Me too.
• 37:11
  SPEAKER_00: I love Brene.
• 37:12
  SPEAKER_00: I've read I love the man in the arena.
• 37:16
  SPEAKER_00: I love that whole idea.
• 37:19
  Mary Lee: Yeah.
• 37:20
  Mary Lee: So we'll dive into some uh just to give us a little bit more about you in a playful manner and an insightful manner.
• 37:27
  Mary Lee: So are you ready?
• 37:29
  Mary Lee: Yes.
• 37:29
  Mary Lee: Okay.
• 37:30
  Mary Lee: This one's gonna be personal and probably real poignant.
• 37:34
  Mary Lee: Migraine in one word.
• 37:38
  SPEAKER_00: Um stigma.
• 37:44
  Mary Lee: Are you a morning writer or a midnight writer?
• 37:49
  Mary Lee: Morning.
• 37:52
  Mary Lee: You write.
• 37:53
  Mary Lee: Pen and paper?
• 37:55
  Mary Lee: On screen.
• 37:56
  Mary Lee: Both.
• 37:57
  Mary Lee: Oh, okay.
• 38:00
  Mary Lee: You care to elaborate.
• 38:02
  SPEAKER_00: I always take paper with me.
• 38:03
  SPEAKER_00: A lot of times I take paper at the beach.
• 38:05
  SPEAKER_00: I belong to a group called Imaginative Storm.
• 38:09
  SPEAKER_00: And we only write with pen and paper.
• 38:12
  SPEAKER_00: And we write in 10-minute jogs.
• 38:15
  SPEAKER_00: We set the timer for 10 minutes and we don't let our like inner critic judge any of our writing.
• 38:21
  SPEAKER_00: We have a prompt and we just go for 10 minutes and you have some incredible writing.
• 38:26
  SPEAKER_00: So when I'm stuck on something, I'll do that.
• 38:29
  SPEAKER_00: Or if I want to create a character or something about a character, I'll do that and I'll write longhand.
• 38:35
  SPEAKER_00: I I do both.
• 38:37
  SPEAKER_00: I use Scribner when I need to keep track of places or characters or that kind of thing, and when I'm trying to organize everything and type it up into its final form, but I do write a fair bit longhand and then type it up.
• 38:51
  Mary Lee: Tell us a little bit more about that tool that you use.
• 38:54
  SPEAKER_00: Scribner.
• 38:56
  SPEAKER_00: It's a writing app instead of Microsoft Word or something.
• 39:00
  SPEAKER_00: It's a little bit more geared towards writers.
• 39:03
  SPEAKER_00: It makes it a little easier to keep track of places and characters, and you can import photos and pictures of characters and that you have in your mind.
• 39:22
  SPEAKER_00: Um having my Cavalier King Charles Spaniel snuggled up next to me.
• 39:28
  Mary Lee: I love that.
• 39:30
  Mary Lee: A book that changed you.
• 39:33
  SPEAKER_00: I'd have to say the uh wisdom of menopause, Christian Northrop.
• 39:38
  SPEAKER_00: I think that one definitely changed me.
• 39:40
  Mary Lee: Absolutely.
• 39:42
  SPEAKER_00: Also, Brene Brown's books also changed me.
• 39:45
  Mary Lee: Beautiful.
• 39:46
  Mary Lee: I would like to finish off this conversation with a really important question, Alice.
• 39:52
  Mary Lee: And that is, you've spent a lifetime learning how to name something that other people couldn't see, that was invisible to them, but very real to you.
• 40:01
  Mary Lee: If you could leave our listeners with one thought about the importance of believing people when they tell you there's something inside their body that's happening that they don't understand, what would you want them to remember?
• 40:17
  SPEAKER_00: Listen.
• 40:18
  SPEAKER_00: When someone tells you that they're hurting or that something's not right, listen.
• 40:24
  Mary Lee: And that's very good advice too for the woman going through a menopause experience as well.
• 40:31
  Mary Lee: Is that sometimes the first act of healing isn't trying to fix, it is just being that compassionate listener.
• 40:37
  Mary Lee: Beautiful.
• 40:39
  Mary Lee: Alice, I have so much enjoyed listening to your story and sharing in the space.
• 40:47
  Mary Lee: I appreciate you coming on, sharing your energy, sharing your experience and your story.
• 40:52
  Mary Lee: I can't wait to promote the book.
• 40:55
  Mary Lee: Thank you.
• 40:55
  Mary Lee: Thank you for being here.
• 40:56
  SPEAKER_00: It's been an amazing hour.
• 40:58
  SPEAKER_00: I went by too fast.
• 40:59
  SPEAKER_00: I've enjoyed spending time with you, Mary.
• 41:02
  SPEAKER_00: Thank you very much.
• 41:04
  Mary Lee: I chose to release this episode on World Menopause Day, October 18th.
• 41:09
  Mary Lee: And this year's theme is Chronic Pain at Midlife.
• 41:13
  Mary Lee: The International Menopause Society, IMS, established this Awareness Day in 2009 with the intent to raise awareness about menopause, challenge the status quo around the belief that menopause is just something to endure and to educate society, including the medical community, through research, most of which is delivered in the form of white papers.
• 41:37
  Mary Lee: This year's focus elevates lesser disgust midlife pain conditions, including migraine, headache disorders, jointa, and pelvic pain, to urge better recognition and evidence-based care.
• 41:52
  Mary Lee: And although Alice's book is predominantly designed to give a younger audience and their family and caregivers the language to explain migraine pain, there is a significant overlap with the female population who experience chronic pain, which can stem from a variety of sources, be it neurological, reproductive system, biological.
• 42:15
  Mary Lee: I'm talking not only about migraine pain, but also conditions like PMOS.
• 42:21
  Mary Lee: And you can go back to my last episode with Christine Horton to learn a little bit more, endometriosis, PMS pain, and other conditions that can be debilitating and demoralizing if you struggle to find the language and the care to support you in your experiences.
• 42:40
  Mary Lee: So take from this conversation that which resonates with you, but also remember that on this day, if you are listening in real time, the goal is to raise awareness and to support one another through the midlife transition.
• 42:53
  Mary Lee: So please, I encourage you share this episode with a friend, a colleague.
• 42:58
  Mary Lee: It just might make a significant difference for them.
• 43:01
  Mary Lee: Alice's book, Mabel and her bright, noisy, prickly, dizzy migraine, releases on November 10th, 2026.
• 43:11
  Mary Lee: You can pre order on Amazon or bookshop.org.
• 43:15
  Mary Lee: Both those links will be in the show description below.
• 43:18
  Mary Lee: So go check it out.
• 43:20
  Mary Lee: Until next time, my lovelies, stay informed, stay empowered, take good care of your health and each other.