What is Neurodiversity?

Transcript

Ellie Pike:
Imagine waking up, eating breakfast, getting dressed, and just as you're about to head out the door, your vision begins to swirl and stars cloud your eyes. Congratulations. You are no longer normal. You have had a seizure and will deal with epilepsy for the rest of your life. Pretty terrifying, right?

Alisa Kennedy Jones:
It was one of those Donnie Darko moments where imagine having two projectors in your head, which of course we do in our eyes. One of them is winding forward at a rapid pace and the other one is reversing and rewinding backwards in another. And so I couldn't make my vision one.

Ellie Pike:
Well today's guest has lived a fascinating life. Ali Kennedy Jones is a copywriter, brand strategist and screenwriter who has worked on projects ranging from Colgate to Marvel comics. She's also a published author who has been championing the idea of neural diversity and how it can reframe a diagnosis from debilitating devastation to empowering creativity. Her book Gotham Girl Interrupted brings us along a journey of motherhood, love and epilepsy. She sat down with me recently to dig into why our perspective on brain abnormalities needs to change.

You are listening to Mental Note podcast. I'm Ellie Pike.

Alisa Kennedy Jones:
My name is Alisa Kennedy Jones, and I'm the author of Gotham Girl Interrupted, My Misadventures in Motherhood, Love and epilepsy.

Ellie Pike:
So I want to hear more about that. You have become a pretty notable speaker, writer and contributor to NPR as well, and you have quite a story to share, and you've had a lot of surprises in your life. And one of them being discovering at around the age of 40 that you have epilepsy, which means that you've had many, many seizures. So can you just tell us a little bit about what that journey's been like for you?

Alisa Kennedy Jones:
Yeah. So I really knew nothing about epilepsy at all when I came to this. I was living in California and working as a screenwriter for film, TV and some stage. And I was on my way to the television academy with my daughter and her friend, we were going to see Nanny McPhee and I just had no idea. 65 million people have epilepsy and I never could have guessed that I would be one of them, but I was getting ready to go. I had run out for coffee, I'm yelling at everyone. I'm like, "Come on, we got to go, we're going to be late." And I'm headed back out toward the car. My editor always wants me to say like, "Oh, the world, I melted into the kitchen floor", but that's not how epilepsy worked for me. And I had no idea there are actually 40 different types of seizures.

I felt the world slicing away and falling away. And then a starry fireworks taking over my vision, which then morphed into blackness. I mean, honestly, I kept trying to tell my daughter, my youngest daughter, "Oh it's like a lightning storm in my head." It was one of the most exquisite things I'd ever seen in terms of a light show. In terms of waking up from a seizure, and I had had a tonic clonic, so convulsive seizure on the floor of the kitchen, I woke up looking like a prize fighter, having really frightened my family and friends. And, of course, when you're waking up from something like that, if don't know, it sounds like people are just down the hallway from you. And I just had no idea really what was happening until my girlfriend leaned over to me in the hospital. And I could just see her outline of her face and hair. She's got this Isabella Rossellini crazy haircut, and she's like, "Darling, darling, you've had a seizure." I'm line "What's a seizure?"

Ellie Pike:
I can only imagine how unnerving that was for you, especially because this was such a new experience in diagnosis. And then that created a series of seizures that would just come at unknown times. Is that right?

Alisa Kennedy Jones:
Yeah. So it's interesting. I mean, there are a bunch of different theories. What happens is you have a seizure and it's almost like a kindling of the brain. And so you're much more likely to have a second seizure within the next 24 hours. So I had this single very long seizure and they didn't know if I'd had a stroke or what the damage was. I was very unnerved by this and my strategy initially was denial. I go to say the word garage and it would come out yard, garbage, garage. And so there was a expressive aphasia that was problematic in getting out the right words. Or I'd go to say a word and get like "Put the dish in the thing that holds the dishes before they go in the dishwasher." And my daughter would say, "You mean the sink?"

Ellie Pike:
I imagine you felt very childlike.

Alisa Kennedy Jones:
Yes. I was like "Oh my gosh." And there are all these rules you have to... No swimming, no showering alone. I'm like, "But come on." I refused to go to the doctors to the follow up neurology for about three months. I did not follow up with the neurologist until my head started really hurting and I started having auras again. And auras, of course, are those visual and audio disturbances or little shimmer in the corner of my vision right before I have a seizure. And that moment of anxiety, it's this little prodromal moment of like, "Oh something's going to go down." And that anxiety is actually very useful to signal to get to a safe space or soft space or baby proof space. This low level anxiety was what prompted me to follow up with the neurologist and say, "Okay just give it to me straight."

Because it was that anxiety, it was also this feeling in my head of just like there was a wire tightening at different times. And I was like, "Okay so things are not right and it's time to get to the bottom of this and just swallow the frog and find out what's going on with your brain."

Ellie Pike:
And I think with many diagnoses, there can be a feeling of shame and you've already alluded to it, "I've been doing everything right, why would I get this? How could that happen if I've been doing things right to be a healthy human?" So did you experience any of those feelings of shame or feel that from other people at all?

Alisa Kennedy Jones:
I guess I didn't feel shame because I'm like, "This is not anything I control. It's a brain condition. It's not something that, if I have a seizure, that's nothing to do with me as a person at all. Come on." I did have moments of shame when I had a seizure at work where I worried for how frightened, and it wasn't shame so much, it was more concern and worry for the people around me, if that makes sense, because I know how frightening seizures can be. So I was worried for them, not so ashamed for me, because again, it's a neurological condition, which sounds really flippant, but I don't mean to sound that way.

Ellie Pike:
It's actually a refreshing perspective, because you're saying like, "This is my brain chemistry. I have no control. My brain had different plans" and there's no shame in that. And I think if we were to even broaden that into talking about mental health, there's so much shame wrapped up in any kind of mental health issue. And if we really separate ourselves a little bit more to say like, "Wow, my brain had different plans and my brain's just more anxious than average, but maybe there's some purpose in the anxiety." It wouldn't be so bad for us if we could actually talk about it without so much stigma. And so I think that that's why your story is so refreshing to me.

Alisa Kennedy Jones:
Well also, I mean, in looking back at the history, when I was researching for the book, I needed to find a way to tell a better story around my story. Because, again, with the dangerous Googling, all I read everywhere, I saw only negative narratives. And I'm not saying that it's not complicated. It is complicated. It's complicated figuring out how to drive your kids to school when you're a single parent and suddenly you're not allowed to drive. You need a tribe of girlfriends and family and friends who are understanding, but on the mental health side of things, I mean, there were so much stigma associated with epilepsy. Epileptics weren't allowed to get married in Missouri until, I think, 1980.

Ellie Pike:
Wow.

Alisa Kennedy Jones:
There were rules against epileptics or people with epilepsy going into retail environments because a seizure would create a harsh experience for other customers. I mean, if you're thinking about 65 million people, there were so many stories and things that I read relative to the different attempts at cures and remedies back in the Victorian era. I mean, it was associated with sexual deviancy. What's that? I was shocked that something so broad and so widespread, and if you think about people, you've got 23 million people suffer from schizophrenia and 65 in people with epilepsy. And there's so much stigma around these different mental health disorders, different brain disorders, epilepsy colonies, where people would go to live out their lives, the different types of surgeries from frontal lobotomies. I mean, all of it was incredibly frightening and just perpetuating fears.

There were moments where, if I'm having a hundred seizures a day, when I was figuring out my different medications and treatment routine, that's exhausting. Going through a seizure, it's the worst panic attack that you could ever imagine, like running a marathon. For me, I had to get down with it and get and dirty with it and figure out what the heck was going to work.

Ellie Pike:
I really think that's a great lead in to chatting more about how you discover magic instead of just tragedy and the story that others are telling. And if I may, I actually would like to read an excerpt from your book. I'd love everyone to read Gotham Girl Interrupted. It's pretty fantastic. And there's lots of humor in there, but you have some really profound statements. And so one of them that really stuck out to me is when you said, "So this is my story about not tiptoeing around the difficult dots. Little did I know as I was writing this how much the concept of neuro diversity would come to matter. The idea that whether you have anxiety, depression, addiction, bipolar disorder, autism, or epilepsy, the point is your own individual neural wiring might, in fact, be your magic rather than your tragedy." And then you say "It might allow you to find meaning in places you never expected to." And then later you talk about, "It doesn't make you less, it makes you magic." So can you expound on that a little bit and how you've come to that realization?

Alisa Kennedy Jones:
I came to that realization, in part, from a book called The Wisdom of Loving Kindness by Pema Chodron. Are you familiar with her?

Ellie Pike:
I am. Yes.

Alisa Kennedy Jones:
Yeah. So I'd been given the book as sort of, you need to be a nicer person. I think present from my one of my family members, sometimes because I can be a little snarky. And she has a whole section about maybe this is your juiciness. Why let go of that juiciness? That your fierceness or your ferocity as a person, your feistiness, you don't have to be a doormat. And that sometimes that electricity, because again, I have an over abundance of electricity in my brain and that's what's causing these disturbances across the lobes and I needed to make that into something more magical. And what if that was part of my juiciness? What if that was part of my creativity as a person who was working in the ad world and the branding world for such a long time? What if that was part of my resourcefulness as a writer and as a mom? That rich inner life was still possible.

And I believed, and again magical thinking, that that was part of me and that that was going to be important. I had also become familiar with this idea of neuro diversity through the world of autism and Steve Silberman and his book Neurotribes and I really thought, I'm seeing so many people in and around my life and in my family who are in various ways dealing with something chronic, whether it's any of the conditions that you mentioned, depression, anxiety, ADHD, we have dealt with autism in our family and so everyone's got something. And maybe this is my something, and maybe this is something that I need to stop dancing around and being embarrassed by. If I'm going to seize, most of the time if I'm going to have a seizure I'm not there for it. What I can do is gather a lot of information from the people who were there for it. And that's going to help me with my clinicians, with my doctors to say, "Okay this is how we deal with it."

Ellie Pike:
I think that our world would just be such a better place if we could all own those pieces of ourselves. There's lots to dislike about anxiety, depression, bipolar, epilepsy, or there's some magic in it that we can see. What is this teaching me? And you have found this storyline of reframing and understanding that you have control in the narrative that you share and the narrative that you tell yourself.

Alisa Kennedy Jones:
I would say I have better control. I'm lucky to be born in the time that I've been born because other epileptics or people with epilepsy haven't had the advantages, benefits and opportunities that I've had. I mean, but at the same time, there were so many cool people who had epilepsy and never talked about it or never let it get in the way of what they were doing, whether it was Dostoevsky having incredibly frightening, terrifying seizures, but also incredibly beautiful seizures and writing incredibly beautiful books. Isaac Newton had epilepsy, Albert Einstein, Agatha Christie, the writer of so many books had epilepsy. There were so many amazing people, van Gogh, who dealt with seizures throughout their lifetime. It shouldn't be a reason to stop, and it shouldn't be a reason to not have a story that I could find some joy in. And if I was going to have this life of seizures, I wanted to find those pockets of joy in between each one of them.

Ellie Pike:
I think that that's such an important tidbit. If any of our listeners are taking something from this about how do I reframe or how do I stay present? And I think you just described that. In between those hardships, I'm going to find those pockets of joy because I refuse to live in just heaviness. And so I'm curious if someone was talking to you about like, "But how the heck do you reframe?" You live anxiously, it's unknown when your next seizure would be? How do you reframe that story? What would you tell someone?

Alisa Kennedy Jones:
Well, I mean, I guess, what would I tell someone? I mean, I know my particular triggers, it's like a beast I've been getting to know for the last nine years, pretty intensively. I also dove full tilt into trying to figure out what medications would work and what didn't work at all for my seizures. And I was like "Welcome to the cocktail party that is going to be my brain until I figure this out." And sometimes that reframing doesn't happen for a while, so you have to sit with it. Once you sit with it for long enough, I think, you're like, I could look at it this way or I could look at it... Every time I have a seizure and my language goes to hell again and I start having lots of word retrieval issues, I'm like, "I'm going to do activities with my hands this week."

Because I know from my own experience from these seizures that the more I do with my hands, for some reason, the more my language returns. So you get to know it, whatever you're dealing with, whatever you're grappling with. It may be living in a state of disaster preparedness. But then that becomes a way of dealing with it. Like here's the seizure with response plan that we have laminated on the fridge of exactly what it takes to be a hero, next time mom has a seizure. So being able to empower people around me to respond accordingly and be amazing in the moment also helps things.

Ellie Pike:
Yes. Yeah. And that goes beyond your story and into anyone's life who's trying to reframe any hardships and they have to ask for support, that there can be beauty in asking for support and really creating that to be a heroic moment for others, and exactly what you need at the same time. How would you describe what that's like, to create your own dream team?

Alisa Kennedy Jones:
Well, I didn't have it at the get go. I mean most people think neurology is the brain doctor, but it took me a while to learn this, that I actually, because of the nature of my seizures, I needed someone who was an epilepsy specialist because a neurologist could be specializing in anything from MS to Alzheimer's to stroke patients. And there are so many specialties within the specialty and it took me a while to figure that out. So having that person who really understands my type of seizure, my seizures, which are beautiful at the get go and start in the temporal lobe and then generalize across the brain to become a really scary tonic clonic seizure. I needed to find a doctor who knew that beast and I needed to find a specialist in anxiety for me, but also for children of like, how do you recover when your parent has a really traumatic incident and then keeps having them? Because that was a big fear. For me, the big barometer was, am I going to be able to laugh with this doctor when I'm in the EMU, which is the epilepsy monitoring unit for five days? And I haven't been able to take a shower because I'm hooked to this wall and all these machines monitoring my brain to try to figure out what meds work and what meds don't. And I look like the mummy. I mean, I need to be able to find the human connection in all of that and not just medical orthodoxy. So it took a lot of interviewing.

Ellie Pike:
I like that you felt empowered to interview them. You are the expert on your life and you're inviting them into your story. And I think that that feels really empowering to me as just a fellow human who also needs medical and psychological help at times. That I have the ability and capability to interview others, to see if they're a good fit for my team. And I think that that is so important for any of our listeners who are looking for any kind of mental health or physical health treatment in any capacity. Find the team that feels right to you, where you feel like you're informed and part of the team.

Alisa Kennedy Jones:
It's made me a lot less afraid, but what it also opened me up to is different conversations with therapists. And the last time I was in the EMU, having my EEG done for three days, the hospital chaplain came by. And I guess I had a long talk with her about how disappointed I was that if it was just lights out and that's what it felt like for me with the seizure. I was like, "Oh the universe has to be more interesting than just lights out. I expect more." There was a little bit of that in my thinking. I was like, here you have one of the most like frightening, terrifying, but then beautiful moments, at least my seizure was, but then just nothing. Is that it, we don't even know we gone? It's that little existential crisis.

And I ended up having one of the most delightful talks with her for about two hours, because she had so many thoughts on how to reconcile that chronic condition of where you feel like you're just living in service of dying sometimes. And that what if it is just all for nought? And so I guess that made me even more feverish to hang on to the present when I had it.

Ellie Pike:
Oh, I think you are hitting just such an important topic of any of these hardships in our lives do make most of us question existentially, but maybe some of the best answers for us are in the present moment.

Alisa Kennedy Jones:
Yeah. A lot of times when I just wake up from a seizure, I can only focus on what's really close in front of me, visually. I can only see things very, very small. It's almost like a myopia, I guess. And it's in the details. So the weave of a fabric in a curtain that I might just fixate on. That little moment of getting lost in the weave of a curtain that is in the hospital and then going, "Oh I need to do that with my actual life", and look more closely at times and enjoy more and savor and be there for it.

Ellie Pike:
And that's the essence of mindfulness, is being present and being awake in the small moments and the present moments and being awake to every sense. And that's a challenge because we live in this rat race, human life. And slowing down is extremely hard. And I like that you're talking about this, because this is such a challenge, I think, for many of us.

Alisa Kennedy Jones:
I know. I said that, I think I wrote like "We live in this epileptic age", meaning there's just too many screens, there's too much electricity, there are too many signals. The signal and the noise, how do I get to the signal in the moment? I get that, and waking up anew from a seizure. It's almost like that feeling, I don't know if you've ever experienced this, but it's the feeling of right after you sneeze, it feels so great. So there's a little bit of that, of having a beginner's brain, like you've just been rebooted.

Ellie Pike:
Wow. And you've been given this magic through epilepsy. Not that that's been your choice at all.

Alisa Kennedy Jones:
No. And I wouldn't wish epilepsy on anyone.

Ellie Pike:
Of course, but you're finding the magic.

Alisa Kennedy Jones:
I mean, I have woken up to ridiculous situations. I mean, I've woken up at a writer's retreat to a hippie in a Muppet sweater going "Dude, dude, are you all right? Do you need some weed?" I've woken up to an Uber driver in New York trying to exorcise my demons in the hospital. I think if I could bring more of that to my life, I'd probably have a more interesting experience and I would love to write about it more and be amazed by it. But I definitely was fascinated by the beginner's mindset in that all colors feel technicolor bright and new, and sound is even more intense and interesting.

Ellie Pike:
I see the beauty and the way that your story has taught you, that this could be transformative if you're able to employ this in your daily life and that's a practice that's not going to come overnight. But I do think that that's part of the challenge of your story to any of our listeners is we all have the ability to reframe because we're all storytellers. So what story are we telling? And then too, how do we reframe our minds and bring ourselves back to the present moment? That it's not all doom and gloom. And so your story I feel like is very inspiring and motivational in that way. And I'm really grateful that you are willing to share it with us. So I'm curious if you had any take home message for our listeners who are like, "How the heck does this apply to my life? I don't have epilepsy, but I do have heaviness."

Alisa Kennedy Jones:
What helped me a great deal, and I think this goes for a lot of chronic conditions when it comes to self-talk and self-care, whether you're dealing with Lyme's disease or, again, anxiety, depression, bipolar, tremendously difficult issues. What helped me the most in this situation were the rules of improv and the ability to change my self-talk and change my self-care routine by employing those rules. And one of them, I mean the first one is the yes, and you have to find the agreement with what's happening in the situation. There are times when I have to be very resourceful. When I have been disclosing, "Hey, I have epilepsy and that comes with a lot of anxiety and some depression as well."

I've set it up to the way that you would improv on stage, which is like, "Oh, so you know I have epilepsy right? You know I've got that." And that gives the person a little bit of power in the moment, and they're like, "Oh yeah, I didn't know that about you, how you doing with that?" That sort of thing, that works for so many chronic conditions, because it just takes the pressure off. Those rules in terms of finding the agreement, no one's ever wrong, and finding that moment to go yes and so that your partners can say, "Oh, here's what I'm going to do." So you're working with it to create a story that is a story that maybe you're not entirely in control of, because again, we're talking about health and whether it's mental health or physical health.

And it's not always up to us, our brains make other plans, but we can choose, again, how we reframe it and reset the tone on things. And I think that, for me, resetting the tone with humor and telling myself I'm going to life is beautiful the hell out of this condition was something that was powerful for me.

Ellie Pike:
We are so grateful to have you share that hope and skill with us. We just want to say, thank you so much. And thanks for joining our show. And we'll definitely link to your book and your website in our show notes as well.

Speaker 4:
Thank you for having me. And I mean, I guess I go back to, we're all a little electric at the end of the day.

Ellie Pike:
We're all a little electric. I like that. Normal is boring. It gives us chain restaurants, credit card debt, and fake friends. You have something unique to bring to the table. So let's hear about it. The concept of neural diversity is such a paradigm shift that it may take a while to work its way into your world view. To experiment with it, I encourage you to look at how you viewed your shortcomings. Are you comparing yourself to some nebulous concept of "normal"? How's that working out? If it's bringing you down or causing you to self limit, I challenge you to look at your uniqueness as another form of diversity in this world. As always, our show is sponsored by the good people at Eating Recovery Center and Insight Behavioral Health Centers. They're trained, passionate, and able to help you find recovery. For a free consultation with a licensed therapist, please reach out at 8 7 7 4 1 1 9 5 7 8.

Today's show was produced by Sam Pike, edited by Erica Prather and Josh Wright. And I'm Ellie Pike. Till next time.

Presented by

Ellie Pike, MA, LPC

Ellie Pike is the Sr. Manager of Alumni/Family/Community Outreach at ERC & Pathlight Behavioral Health Centers. Over the years, she creatively combined her passions for clinical work with…