When I was 22 I visited a friend in hospital, she was undergoing tests for sudden onset epilepsy. She was 21 years old. I sat on the edge of her bed and we chatted, she wasn't sick, had no hideous medical tubes running from various parts of her body, she may as well have been sitting on my sofa. Until she had a seizure.
Terrified, I watched her face crumple into an unrecognisable sort of gremlin as her body became rigid and a violent seizure took her the devil only knows where? Trembling I ran in search of a nurse then fled back to my apartment on the seafront.
From my big bay window I watched the sun shine down on an aquamarine sea as calm as a fishpond, a hot mug of tea—yup that old cure-all—held in still trembling hands and I felt safe.
Shame came later... and boy it was deep and ugly!
I returned the next day, spoke to my friend, to the nurse, apologised, admitted my fear and asked for help—oh the irony!
Never told a single soul about that til now... never felt so ashamed as I did that day... it still makes me squirm.
Imagine me cheering you on, whooping around my kitchen shouting 'Go Girl, GO!'
Oh Susie… I'm so grateful for your story. Thank you for telling the truth out loud. 💛
What you felt at 22 wasn’t cruelty—it was terror colliding with love, with no map for what to do next. Seizures look violent. They hijack the face, the body, the moment. They scare the hell out of everyone in the room—including the person having them. That instinct to run isn’t moral failure; it’s a nervous system doing its own panicked somersault.
The part that matters—the part that tells me exactly who you are—is what came next. You came back. You asked questions. You stayed. That’s not shameful; that’s growth. That’s courage. :)
And let me say this: people with epilepsy and Tourette's don’t need perfect witnesses. We need human ones. People who get scared, mess up, feel awful about it, and then choose to show up anyway. That’s the whole job.
I’m smiling at the image of you in your kitchen, cheering. I feel it. I take it in. It lands exactly as you intend it—warm, generous, and deeply kind. xoxo
Thank you for sharing this poignant post, Alisa. It's such an important topic, and your heart and specificity help foster the conversation.
In a long-ago chapter of my life, I was a barber. As a young woman, quite naive about the world, a father would bring his son, probably around 10 or 11, who had Tourette's. I had never heard of it. The first time he sat in my chair and started making sounds, cussing, and twitching, I didn't understand what was happening. But grace guided me. I stayed calm, talked with the boy, and finished the haircut. Every few months, the father would bring his son again, and if I was busy, he'd wait. It was a lesson I only understood later— that we are all different, yet fundamentally the same.
Paulette, I can’t tell you what it means that you shared this. Truly.
For generations in this country, people with conditions like epilepsy and Tourette’s were barred—explicitly—from places like hair and retail shops because we were considered a deterrent to business. Too disruptive. Too visible. Too risky. So the act you describe—simply staying, cutting the hair, treating that boy as a person in your chair—is far more intimate and affirming than it might appear from the outside.
To be recognized as human in the middle of involuntary sound and movement, to be given something as ordinary and necessary as a haircut without judgment or fear—that is dignity. That is grace.
What stays with me most is your line: "grace guided me." You didn’t need a diagnosis or an explanation to do the right thing. You met him where he was and let him be. That lesson—that we are all different, yet fundamentally the same—is the bottom line.
Thank you for holding that moment all these years and for offering it now. Stories like yours are how the world actually changes—quietly, one barber chair at a time.
My gosh, Alisa, I did not know that. Thank goodness we have made some progress. As you wrote so beautifully, we need to do better.
It truly was grace. At that age, before I had any self-awareness, I was afraid and anxious of nearly everyone and everything. Maybe, too, because I had three brothers, this young boy touched me, and I somehow knew I needed to show up with presence. Thanks for your response.
Alisa, I'm choosing not to read into your comedy tutorial yet because--- I just can't continue into joy without addressing my sorrow. It doesn't work for me, and can I just say, maybe it shouldn't for any of us? I loved this post supporting neurological events and those experiencing them. I need no comedy at the end to lift my spirits. Instead I remain thankful that my faculties cooperate with my wishes, because I believe and understand the meaning behind the phrase, "There but for the grace of G-d go I." You are an amazing force, and I'm so thankful for you. I'll be reading your comedy in the next few days. In the meantime, march on, my girl. You rock.
I'm so moved, Alisa, by the specificity here -- the concrete examples, the way we learn to love the imperfections in the other, often too late. As a small aside, where art is concerned, my ability to get out alive and tell the story, I have a five-year rule to get the distance with acceptance, without catharsis, and in my case, at times even funny without knowing. At the heart of your words, I find the all of you that I so admire and must love from afar. I know your humanity, your vulnerability and your uncanny ability to accept the entire of the other and hold the "all" in the palm of your hand that you extend. I thank you with this note, with gratitude.
Mary, this means more to me than I can say, especially tonight. Your five-year rule is such a gift: distance without anesthesia, acceptance without spectacle. That’s the kind of courage art actually requires.
What you say about loving the imperfections—often too late—is exactly the ache I was trying to name. And hearing it reflected back through your lens feels like being understood in a way that steadies me.
I’ll be with you on Live, raising a glass from Cambridge—cheering, celebrating, and holding space for this luminous, haunting thing you’ve made. WHO BY FIRE carries so much beauty and forgiveness in the same breath, and tonight it gets to exhale... Huzzah!!!
This must have been so triggering. All people had to do was google Tourette’s. What’s spitting out does not mean it’s what the person is thinking or a reflection of who they are.
Love your comedy lessons. The future self can also be seen as an out of body experience when looking at a situation.
Thank you for your perspective and experience. Sharing stories (and listening) helps us all to be more compassionate. I’m really enjoying the humor lessons. ☺️
It's so important to hear messages like this from those who have neurological conditions that present publicly. People fear what they don't understand, and stigma is sticky.
On top of that, most of us focus too much on how an event makes us feel rather than considering the feelings of the person who's experiencing it.
It's crazy to me that you, or anyone, would lose relationships from choosing to be open about having epilepsy. Good God, Lemon.
It's hard to believe that your family could turn on you when you have any sort of neurological issue or disease, but I know it happens a lot, and it sucks that it happened to you. Maybe it's rooted in people being afraid of it happening to them, or not knowing what to say, or in you suddenly not being available to them the way you used to be. You're no longer "as fun", simply because you can't do what you used to. I've been confronted with this so much since I got sick.
I didn't watch the Baftas, but I know about Tourettes, and know that it can be shocking for people who don't know what's happening to the person who has lost control of his thoughts and language.
As for the funnies, yep! Those uncomfortable moments when you want the earth to swallow you up, or wish you could hop into your teleporter and get whisked away into a completely different life, are gold to write about later on! Also, those twits who were mean to you?! hehehe.... 😜
Francesca, this lands so deeply. Yes, caregiver fatigue is real, and so is witness fatigue. I think I’ve stopped expecting people (especially family) to show up as me, because that version of me asks more of them than they know how to give.
What you say about fear feels exactly right. Fear of it happening to them. Fear of saying the wrong thing. Fear of losing the version of you that was easier, more available, more fun. Illness rearranges the social contract, and not everyone consents to the new terms.
Epilepsy really does feel like a video game sometimes—watching the life-energy bar tick down with each seizure, knowing you don’t control when the next hit comes. It makes you budget yourself differently. Choose balance over bravado. That’s not failure—it’s adaptation.
I love what you say about those moments becoming gold later. You’re right. The urge to vanish, to teleport out of your own body? Prime material. And the people who were unkind—oh, they always age terribly on the page. 😂
Thank you for such a sensitive, insightful post about epilepsy. The mystery of the brain continues to reveal itself to research but not quickly enough for those impacted by its strange inner workings.
Thanks for a beautifully compassionate and insightful article Alisa. My nephew has Tourettes and my daughter struggles with anxiety. Both are compassionate, kind, strong and smart. Learning how to navigate school, work and society to 'fit in'. Pushing down, masking, apologising. It's exhausting. Without compassion and love, it's cruel and inhumane. Thank you for putting this in the spotlight. To help us be better humans. Anita xx
I hadn't heard about the Bafta event or this movie. 💔 Thanks for shining a light on this and for always being open and honest about your experience. I wish compassion came in vitamin form because so many people are lacking. Looking forward to the event tonight. I'm taking the bus! Going to be an epic adventure.
When I was 22 I visited a friend in hospital, she was undergoing tests for sudden onset epilepsy. She was 21 years old. I sat on the edge of her bed and we chatted, she wasn't sick, had no hideous medical tubes running from various parts of her body, she may as well have been sitting on my sofa. Until she had a seizure.
Terrified, I watched her face crumple into an unrecognisable sort of gremlin as her body became rigid and a violent seizure took her the devil only knows where? Trembling I ran in search of a nurse then fled back to my apartment on the seafront.
From my big bay window I watched the sun shine down on an aquamarine sea as calm as a fishpond, a hot mug of tea—yup that old cure-all—held in still trembling hands and I felt safe.
Shame came later... and boy it was deep and ugly!
I returned the next day, spoke to my friend, to the nurse, apologised, admitted my fear and asked for help—oh the irony!
Never told a single soul about that til now... never felt so ashamed as I did that day... it still makes me squirm.
Imagine me cheering you on, whooping around my kitchen shouting 'Go Girl, GO!'
Oh Susie… I'm so grateful for your story. Thank you for telling the truth out loud. 💛
What you felt at 22 wasn’t cruelty—it was terror colliding with love, with no map for what to do next. Seizures look violent. They hijack the face, the body, the moment. They scare the hell out of everyone in the room—including the person having them. That instinct to run isn’t moral failure; it’s a nervous system doing its own panicked somersault.
The part that matters—the part that tells me exactly who you are—is what came next. You came back. You asked questions. You stayed. That’s not shameful; that’s growth. That’s courage. :)
And let me say this: people with epilepsy and Tourette's don’t need perfect witnesses. We need human ones. People who get scared, mess up, feel awful about it, and then choose to show up anyway. That’s the whole job.
I’m smiling at the image of you in your kitchen, cheering. I feel it. I take it in. It lands exactly as you intend it—warm, generous, and deeply kind. xoxo
Thank you for sharing this poignant post, Alisa. It's such an important topic, and your heart and specificity help foster the conversation.
In a long-ago chapter of my life, I was a barber. As a young woman, quite naive about the world, a father would bring his son, probably around 10 or 11, who had Tourette's. I had never heard of it. The first time he sat in my chair and started making sounds, cussing, and twitching, I didn't understand what was happening. But grace guided me. I stayed calm, talked with the boy, and finished the haircut. Every few months, the father would bring his son again, and if I was busy, he'd wait. It was a lesson I only understood later— that we are all different, yet fundamentally the same.
Paulette, I can’t tell you what it means that you shared this. Truly.
For generations in this country, people with conditions like epilepsy and Tourette’s were barred—explicitly—from places like hair and retail shops because we were considered a deterrent to business. Too disruptive. Too visible. Too risky. So the act you describe—simply staying, cutting the hair, treating that boy as a person in your chair—is far more intimate and affirming than it might appear from the outside.
To be recognized as human in the middle of involuntary sound and movement, to be given something as ordinary and necessary as a haircut without judgment or fear—that is dignity. That is grace.
What stays with me most is your line: "grace guided me." You didn’t need a diagnosis or an explanation to do the right thing. You met him where he was and let him be. That lesson—that we are all different, yet fundamentally the same—is the bottom line.
Thank you for holding that moment all these years and for offering it now. Stories like yours are how the world actually changes—quietly, one barber chair at a time.
My gosh, Alisa, I did not know that. Thank goodness we have made some progress. As you wrote so beautifully, we need to do better.
It truly was grace. At that age, before I had any self-awareness, I was afraid and anxious of nearly everyone and everything. Maybe, too, because I had three brothers, this young boy touched me, and I somehow knew I needed to show up with presence. Thanks for your response.
Alisa, I'm choosing not to read into your comedy tutorial yet because--- I just can't continue into joy without addressing my sorrow. It doesn't work for me, and can I just say, maybe it shouldn't for any of us? I loved this post supporting neurological events and those experiencing them. I need no comedy at the end to lift my spirits. Instead I remain thankful that my faculties cooperate with my wishes, because I believe and understand the meaning behind the phrase, "There but for the grace of G-d go I." You are an amazing force, and I'm so thankful for you. I'll be reading your comedy in the next few days. In the meantime, march on, my girl. You rock.
Thanks, Sue. Appreciate you. 💛 Loved seeing you and Lucia this week! xoxo
I'm so moved, Alisa, by the specificity here -- the concrete examples, the way we learn to love the imperfections in the other, often too late. As a small aside, where art is concerned, my ability to get out alive and tell the story, I have a five-year rule to get the distance with acceptance, without catharsis, and in my case, at times even funny without knowing. At the heart of your words, I find the all of you that I so admire and must love from afar. I know your humanity, your vulnerability and your uncanny ability to accept the entire of the other and hold the "all" in the palm of your hand that you extend. I thank you with this note, with gratitude.
Mary, this means more to me than I can say, especially tonight. Your five-year rule is such a gift: distance without anesthesia, acceptance without spectacle. That’s the kind of courage art actually requires.
What you say about loving the imperfections—often too late—is exactly the ache I was trying to name. And hearing it reflected back through your lens feels like being understood in a way that steadies me.
I’ll be with you on Live, raising a glass from Cambridge—cheering, celebrating, and holding space for this luminous, haunting thing you’ve made. WHO BY FIRE carries so much beauty and forgiveness in the same breath, and tonight it gets to exhale... Huzzah!!!
With so much love and gratitude, A 💛
I'll be there as well from Cool, California!
💐
See you tonite. You got this!!
This must have been so triggering. All people had to do was google Tourette’s. What’s spitting out does not mean it’s what the person is thinking or a reflection of who they are.
Love your comedy lessons. The future self can also be seen as an out of body experience when looking at a situation.
💛💛💛 Exactly!!! See you tonight!!!
Thank you for your perspective and experience. Sharing stories (and listening) helps us all to be more compassionate. I’m really enjoying the humor lessons. ☺️
"Humor is recognition" that we are all in this shit show together. thanks
It's so important to hear messages like this from those who have neurological conditions that present publicly. People fear what they don't understand, and stigma is sticky.
On top of that, most of us focus too much on how an event makes us feel rather than considering the feelings of the person who's experiencing it.
It's crazy to me that you, or anyone, would lose relationships from choosing to be open about having epilepsy. Good God, Lemon.
Ha, ha, ha!!! Good God, Lemon is right!
It's hard to believe that your family could turn on you when you have any sort of neurological issue or disease, but I know it happens a lot, and it sucks that it happened to you. Maybe it's rooted in people being afraid of it happening to them, or not knowing what to say, or in you suddenly not being available to them the way you used to be. You're no longer "as fun", simply because you can't do what you used to. I've been confronted with this so much since I got sick.
I didn't watch the Baftas, but I know about Tourettes, and know that it can be shocking for people who don't know what's happening to the person who has lost control of his thoughts and language.
As for the funnies, yep! Those uncomfortable moments when you want the earth to swallow you up, or wish you could hop into your teleporter and get whisked away into a completely different life, are gold to write about later on! Also, those twits who were mean to you?! hehehe.... 😜
Francesca, this lands so deeply. Yes, caregiver fatigue is real, and so is witness fatigue. I think I’ve stopped expecting people (especially family) to show up as me, because that version of me asks more of them than they know how to give.
What you say about fear feels exactly right. Fear of it happening to them. Fear of saying the wrong thing. Fear of losing the version of you that was easier, more available, more fun. Illness rearranges the social contract, and not everyone consents to the new terms.
Epilepsy really does feel like a video game sometimes—watching the life-energy bar tick down with each seizure, knowing you don’t control when the next hit comes. It makes you budget yourself differently. Choose balance over bravado. That’s not failure—it’s adaptation.
I love what you say about those moments becoming gold later. You’re right. The urge to vanish, to teleport out of your own body? Prime material. And the people who were unkind—oh, they always age terribly on the page. 😂
Thank you for such a sensitive, insightful post about epilepsy. The mystery of the brain continues to reveal itself to research but not quickly enough for those impacted by its strange inner workings.
Thanks for a beautifully compassionate and insightful article Alisa. My nephew has Tourettes and my daughter struggles with anxiety. Both are compassionate, kind, strong and smart. Learning how to navigate school, work and society to 'fit in'. Pushing down, masking, apologising. It's exhausting. Without compassion and love, it's cruel and inhumane. Thank you for putting this in the spotlight. To help us be better humans. Anita xx
Oh, Anita… Masking is wicked exhausting.💛 xx
I hadn't heard about the Bafta event or this movie. 💔 Thanks for shining a light on this and for always being open and honest about your experience. I wish compassion came in vitamin form because so many people are lacking. Looking forward to the event tonight. I'm taking the bus! Going to be an epic adventure.