The Kristen Toepfer Podcast Stroke and Aphasia Advocate

The Other Side of the Stroke — John’s Story, Part 2

John Church is back, and this time we go even deeper. In Part 2 of his conversation with Billy, John picks up where he left off — moving from the raw chaos of the early days into the long, slow, unglamorous grind of years of caregiving. The part nobody puts on a highlight reel. The part that tests everything. John talks about learning to communicate with Kristen when she had no words — the progressive, painstaking process of going from nods to yes and no, from yes and no to broken phrases, from broken phrases to something that finally started to resemble conversation. He opens up about finishing her sentences — a habit he developed out of love and desperation — and the moment speech therapists pulled him aside and told him to stop. That he had to let her struggle. Let her sit in the frustration. Because that was the only way she was going to get better. He did it. Even though it was hard to watch. He describes the night Kristen walked the runway again at New York Fashion Week — this time in a hockey helmet, guided by a coordinator — and how that moment felt not like pity but like pure triumph. And he shares the story of Kristen’s first photo shoot after the stroke, in Asheville, North Carolina, when she looked at Billy and said: I’m back, bitches. Because that is exactly who she is. John also addresses what nobody warned them about — the schizoaffective disorder diagnosis. Starting with minor, almost explainable things in the summer of 2024, and escalating to full hospitalization by December. John describes what it felt like to watch the person he loves be visibly terrified of things that weren’t real, calling the police on herself out of fear, and how completely unprepared he felt — again — for something he never saw coming. He talks about the responsibility of being the person she trusted to tell her what was real and what wasn’t, and how he learned to be direct and caring at the same time without playing into the delusions. He talks about the marriage. About moments of feeling cheated. About watching other couples laugh and communicate easily and feeling the sting of that. About the days he needed a break and had to ask family to step in so he could breathe. And about why he would not have it any other way. John’s final message to caregivers is simple, honest, and exactly what people in the thick of it need to hear: take your time, get educated, talk to someone, and don’t suffer in silence. Because if two people end up needing to be taken care of, nobody wins. And yes — he confirms it. Sometimes all it takes is a hug. Subscribe, order Kristen’s book Finding My Voice, and follow her journey at kristentoepfer.com Join Kristen and cohost Billy Montana for monthly episodes filled with advocacy, education, and inspiring conversations. Together, let's raise awareness for stroke and aphasia and support each other on the journey to recovery. http://kristentoepfer.com [http://kristentoepfer.com/]

The Other Side of the Stroke — John’s Story, Part 1

You’ve heard Kristen’s story. Now hear from the man who lived it right beside her. In this special episode, Billy sits down with John Church — Kristen’s husband, high school sweetheart, and the person who has been her rock through every surgery, every setback, and every hard day of this recovery. John has been mentioned throughout this podcast since the very beginning. This is the first time he gets to tell his own side of the story. John takes us back to the 3 a.m. phone call that changed everything — how Kristen’s words weren’t quite right, how he thought maybe she’d just had a bad dream or a panic attack, and how half intuition and half luck made him leave work and go home instead of telling her to go back to sleep. By the time he got there, he couldn’t get her out of the bed. He called 911. And even the paramedics weren’t sure what was happening. What follows is one of the most honest accounts of a caregiver’s experience you will ever hear on a podcast. John describes driving to the wrong hospital in a panic while Kristen was being airlifted. He describes sleeping in a waiting room for days, barely eating, barely sleeping, cycling between work and the hospital for months on end. He describes the moment the surgeon told him to set his expectations — that she might not make it — and what it is like to have to pick up the phone and repeat those words to the people who love her. He talks about the things nobody prepares you for. Learning that the water bill existed when it got shut off for $38 while Kristen was in a coma. Figuring out her dog’s medications by calling the vet in the middle of a crisis. Taking over every responsibility in the household overnight while working nights at UPS and spending every spare hour at the hospital. And he talks about the communication — the painstaking, creative, heartbreaking game of 20 questions they developed together when Kristen had no words. Is it something in the house? Is it downstairs? Is it food? One nod at a time. And secretly watching out the window every time she walked to the mailbox, just to make sure she didn’t fall. John said it simply: he would have been happy if it was just her head in a jar that could talk to him the way she used to. That one line says everything about what this man went through — and what love actually looks like when it gets tested. This is Part 1. And it is not one to miss. Subscribe, share, and follow Kristen’s journey at https://KristenToepfer.com [https://KristenToepfer.com] Join Kristen and cohost Billy Montana for monthly episodes filled with advocacy, education, and inspiring conversations. Together, let's raise awareness for stroke and aphasia and support each other on the journey to recovery. http://kristentoepfer.com [http://kristentoepfer.com/]

Surviving the Holidays — What Nobody Tells You About Family Gatherings After a Stroke

The holidays are supposed to be the most wonderful time of the year. For stroke and aphasia survivors, they can also be the most exhausting, isolating, and emotionally complicated. In this episode, Kristen Toepfer gets completely honest about what the holidays actually look like when aphasia is at the table. Kristen takes us back to what the holidays were before September 11th, 2018 — gathering at her grandmother’s house, her in-laws, her aunt’s, going to church, and hunting for the plastic German pickle hidden in the Christmas tree. Life was full and fast and normal. Then the stroke happened, and suddenly family gatherings became a completely different experience. For two years, Kristen sat in the corner at family events unable to speak a single word. She could hear everything — every joke, every story, every conversation — and had absolutely no way to join in. She and her husband John developed their own private code just to communicate the basics. A tug on his shirt meant she needed something or wanted to leave. That was all she had. This episode covers everything families and survivors need to hear but rarely talk about. What it feels like to be in the room but not really in it. How exhausting it is for the brain to attempt conversation when aphasia is involved — and why that exhaustion is invisible to everyone watching. Why being asked “are you okay?” every five minutes by well-meaning family members eventually becomes its own kind of frustration. And what it actually means to treat someone with aphasia like the fully intelligent person they still are. Kristen also shares the moments nobody puts in the highlight reel — including a holiday bathroom incident that required a change of clothes — and why she chose to talk about it publicly, because stroke survivors deserve to know they are not alone in any of it. She talks about pity parties, depression, isolation, the catch-22 of not wanting to go out but knowing you should, and the meditation technique she learned in therapy that helps her recenter when gatherings get overwhelming. She talks about faith, about gratitude, and about the one thing she does every single morning before she gets out of bed. And she shares the one message she wants every stroke survivor to carry into the holiday season: be in the moment and have fun. Simple. And she means it. This episode is for survivors who dread the holidays. It is for the family members who love someone with aphasia and have no idea what they actually need. And it is for anyone who has ever sat at a table full of people and felt completely alone. Subscribe, share, and follow Kristen’s journey at https://KristenToepfer.com [https://KristenToepfer.com] Join Kristen and cohost Billy Montana for monthly episodes filled with advocacy, education, and inspiring conversations. Together, let's raise awareness for stroke and aphasia and support each other on the journey to recovery. http://kristentoepfer.com [http://kristentoepfer.com/]

Mourning Your Old Life — When the Person You Lost Was You

There is a kind of grief that nobody talks about — the grief of losing yourself. Not to death, but to a single moment that splits your life into before and after. For Kristen Toepfer, that moment was September 11th, 2018. And the person she had to mourn was herself. In this deeply personal episode, Kristen takes us back to who she was before the stroke — a nightshift industrial engineer at UPS with nearly 20 years on the job, a model traveling to LA and Nashville for photo shoots, walking New York Fashion Week and loving every second of it. She was fast-paced, on the go, and never once thought a stroke could happen to her at 36 years old. Then it did. Kristen opens up about what it felt like to wake up from a coma and slowly realize that the life she had built — the career, the independence, the ability to simply put her hair up or do her own makeup — was gone. She talks about the years she lost to not even knowing what was happening, the anger she felt at her past self for pushing through warning signs and smoking cigarettes, and the pity parties she admits she had along the way before learning to pull herself back out. But this episode is not just about loss. It is about what happens when you stop asking why me and start looking for what is still there. Kristen talks about the moment she found her new purpose — becoming a stroke and aphasia advocate — and how helping others gave the new Kristen a reason to keep going that the old Kristen never had. She is stronger now. More grateful. She doesn’t judge anymore. She notices birds and sunlight and simple things she would have blown right past before. She also shares what gets her through the hardest days — group therapy, her husband John’s hugs, and the daily practice of finding something to be grateful for before she even gets out of bed. And yes — the Amazon $2 story makes another appearance. If you have ever had to grieve a version of yourself, this episode will hit home. Subscribe, share, and follow Kristen’s journey at kristentoepfer.com Join Kristen and cohost Billy Montana for monthly episodes filled with advocacy, education, and inspiring conversations. Together, let's raise awareness for stroke and aphasia and support each other on the journey to recovery. http://kristentoepfer.com [http://kristentoepfer.com/]

Why My Brain is an A**hole — Part 2: Living With Seizures

She recorded this episode the morning after having a seizure. That alone tells you everything you need to know about Kristen Toepfer. In Part 2 of Why My Brain is an A**hole, Kristen goes deep on seizures — what they actually are, what they feel like from the inside, and what it means to build an entire life around managing something that can show up without warning and take you out for minutes, hours, or days at a time. Kristen lives with Todd’s Paralysis seizures — focal seizures that leave half her body completely paralyzed after they hit. Sometimes for ten minutes. Sometimes for half an hour. Once for almost three days. She explains how these seizures started after a brain infection following her second brain surgery forced doctors to open her skull, wash her brain, and start over — wiping out virtually all the progress she had made in rehab and forcing her to relearn how to walk and talk from scratch. Again. She has had eight brain surgeries in total. Most of them months apart. Kristen also connects the dots between her repeated seizures, the scar tissue on her brain, and her schizoaffective disorder diagnosis — explaining how seizure activity can actually trigger schizophrenia in some patients, something most people have never been told. This episode covers what daily life with seizures actually looks like — why she can’t drive, why she uses a Life Alert device, why she avoids the stove and oven, and why the fear of having a seizure in public has made her increasingly isolated. She talks honestly about not wanting to be a burden to the people around her, the stress that triggers her seizures, and her very real goal of getting back outside, getting back social, and eventually getting back on a bike. She also shares something that stopped the conversation cold — her dog could sense when a seizure was coming by detecting changes in her heart rate. He passed away two months before this episode was recorded. She is getting another one. Practical, personal, and completely unfiltered. If you or someone you love lives with seizures, this episode was made for you. Subscribe, share, and follow Kristen’s journey at https:kristentoepfer.com [https:kristentoepfer.com] Join Kristen and cohost Billy Montana for monthly episodes filled with advocacy, education, and inspiring conversations. Together, let's raise awareness for stroke and aphasia and support each other on the journey to recovery. http://kristentoepfer.com [http://kristentoepfer.com/]