Episodios

  • Author Tim Cummings on How His Brother’s Epilepsy Shaped His New Novel

    Author Tim Cummings on How His Brother’s Epilepsy Shaped His New Novel
    Oct 16 2025
    For Tim Cummings, growing up with a brother who lived with epilepsy often felt like there was a mysterious presence in their shared childhood room. Seizures would often affect his brother Matthew in the middle of the night, a terrifying experience for young Tim to witness. It felt like there was a doorway or a portal opening, connecting Matthew to an unseen realm. This feeling would haunt Tim well into adulthood, particularly after the tragic loss of his brother when Tim was 24. After 40 years as a professional actor, Tim knew he had his own stories to tell. He went back to school, getting his masters in writing, and recently released a new novel inspired by his childhood experiences with Matthew. In The Lightening People Play, fourteen-year-old Kirby writes and produces a play to raise money for a seizure-alert dog for his younger brother Baxter. This production opens a portal through which mysterious figures and symbols appear. This story allows Tim to reckon with his past, immortalizing his brother while allowing for a more uplifting end to his brother's story. In this episode of the Major Pain podcast, Tim recounts the personal history that inspired his new novel, reflecting on how his brother's epilepsy impacted their lives. We discuss the creation of The Lightening People Play and the ways in which chronic illness can affect not only the lives of those living through health challenges, but the lives of their loved ones. Learn more about The Lightening People Play on Tim's website: https://www.timcummings.ink/ Join Tim for an event on 10/26 at The Village Well in Culver City with two stars from the TV show GRIMM, called Spooky Magic in Storytelling. Tickets at https://www.eventbrite.com/e/spooky-magic-in-storytelling-w-tim-cummings-tickets-1743861439509 November is Epilepsy Awareness Month, and if anyone wants to join in a 34-mile run/walk to support, they can sign up here: https://www.facebook.com/EpilepsyFoundationofAmerica/posts/-your-34-mile-walkrun-challenge-november-1-30-take-on-the-challenge-and-raise-fu/927116259443626/ The eBook for The Lightening People Play is now available on OverDrive, which serves more than 81,000 libraries and schools in 106 countries with the industry’s largest digital catalog. https://www.overdrive.com/media/12388451/the-lightning-people-play PlayWatch the episode on YouTube, listen on your favorite podcast platform or here on our website.
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    1 h y 5 m
  • Heartfelt Indie Film ‘The Paper Bag Plan’ Features Authentic Disability Representation

    Heartfelt Indie Film ‘The Paper Bag Plan’ Features Authentic Disability Representation
    Sep 22 2025
    In The Paper Bag Plan, the new film from writer/director Anthony Lucero, a father named Oscar (Lance Kinsey) who discovers he has cancer, decides to teach his disabled son Billy (Cole Massie) to become a grocery bagger in the hopes of landing his first job and beginning a life of independence. This is a deeply personal story, inspired by Anthony's experience growing up with a disabled brother who required full-time care from their mother. This film is notable for the authenticity of its depiction of disability, providing a dream role for Cole Massie, who has been acting since the age of 7. In this episode of the Major Pain podcast we are joined by writer/director of The Paper Bag Plan Anthony Lucero, star of the film Cole Massie and his mother Michelle, to discuss the creation of this impactful independent film. We hear stories about the writing, casting and filming, along with the real-life inspiration for the story. We also hear from Cole what it was like growing up with cerebral palsy, and how Michelle had to fight the public school system for accommodations. If you live in the Seattle area, don't miss a special screening of The Paper Bag Plan at the Majestic Bay Theatres in Ballard on October 5th at noon, where host of Major Pain Jesse is the General Manager! There will be a live Q&A from Anthony, Cole and Michelle after the film. Proceeds will be donated to United Cerebral Palsy. Find tickets here: https://www.majesticbay.com/movies/1000029073-the-paper-bag-plan/ Learn more about The Paper Bag Plan (and Anthony's first film East Side Sushi) on the Blue Sun Pictures website: https://bluesunpictures.com/ PlayWatch the episode on YouTube, listen on your favorite podcast platform or here on our website.
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    51 m
  • Doctors Ignored Alia’s Mystery Illness Until It Was Almost Too Late

    Doctors Ignored Alia’s Mystery Illness Until It Was Almost Too Late
    Sep 8 2025
    In the lifespan of this podcast we have never heard a story quite like Alia’s. Up until she was 27, she was living a healthy, active life. She was a vegetarian since the age of 15, and an avid gym-goer who continued to hit personal bests on lifts. Using her degree in philosophy with an emphasis in biomedical ethics, she works as a Research Data Coordinator for Oncology Research in Iowa. But at 27 her life was flipped upside down when a mysterious seizure kicked off a years-long, life-altering struggle. From the beginning of this medical odyssey, Alia has received shockingly dismissive treatment from doctors. They claimed her seizures were caused by stress, insisting the only treatment she needed was therapy. When she was diagnosed with intracranial hypertension around the time her seizures started, her doctor said it was just anxiety and she should take a bath. Alia applied her experience as a medical researcher to her own case, noticing that there was a link between her seizures and a drop in blood sugar, but doctors refused to examine this link. In fact, they accused her of injecting herself with insulin because her blood sugar was repeatedly dropping so low. Soon she was having gastrointestinal issues, getting extremely bloated when eating, accompanied by sharp, stabbing pains that felt like “glass shards, nails, and acid in your stomach." She would literally pass out from the pain of trying to eat. She was slowly forced to eat less and less, switching to smoothies, and then Ensure to try to keep nutrients in her body. She quickly lost 65 pounds, but doctors refused to do anything about it because her BMI was still within normal range. Instead of helping her get the feeding tube she would need to survive, doctors accused her of starving herself for attention. In this episode of the Major Pain podcast, Alia talks us through the impossible choices she has been forced to make over and over again on this incredibly difficult journey. At multiple points she has almost entered hospice care when the struggle seemed like it would be fruitless. Thankfully, through the Undiagnosed Disease Network and a few exceptional doctors across the country who took her seriously, Alia continues to persevere. She hopes that by sharing her story, she can help others with similar undiagnosed conditions avoid some of the struggles she has faced. Learn more about Alia's journey on her blog: https://waitwiah.blogspot.com/ PlayWatch the episode on YouTube or Spotify, or listen on your favorite podcast platform.
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    1 h y 41 m
  • A Novel Approach to Neonatal Abstinence Syndrome

    A Novel Approach to Neonatal Abstinence Syndrome
    Aug 6 2025
    Tara Sundem took the first steps on her journey to co-founding Hushabye Nursery while working as a neonatal nurse practitioner in neonatal intensive care units. She would help care for babies suffering from neonatal abstinence syndrome (NAS), what used to be referred to as babies born addicted to various drugs. The truth is that these babies are born dependent on these drugs but not addicted. NAS is the term for those babies going through the withdrawal process, just like anyone else stopping exposure to drugs. These babies would sometimes have to stay 30 days or more in the NICU without parents there. Tara began to realize that there had to be a better way. She wanted to give the babies a voice. After several encounters with parents who wanted to stay with their babies, she tried to calm a baby that was on the verge of getting a dose of morphine, the common treatment for babies in the NICU for NAS to prevent them from having a seizure. She took the baby to a dark, quiet room and began to rock the baby while deeply breathing to calm herself like in yoga class. This environment proved to be exactly what this baby needed, avoiding the need for morphine. Tara had a new mission. In this episode of the Major Pain podcast, Tara shares her unique approach to neonatal abstinence syndrome. She co-founded Hushabye Nursery 5 years ago with the goal of helping babies be ok, helping parents care for those babies, and helping the family stay together. She realized that Hushabye could meet families where they are, that opioid addiction is not a moral failing and that helping the family is helping the baby. These babies are in danger of having multiple early adverse childhood experiences (ACE’s) very early in life that will put them at risk of many physical and mental health challenges later in life. In this episode of the Major Pain podcast Tara shares how Hushabye has made it their mission to help babies with NAS get the help they need while keeping families together. Learn more about Hushabye Nursery on their website: https://hushabyenursery.org/ PlayWatch the episode on YouTube or Spotify, listen on your favorite podcast platform or here on our website.
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    51 m
  • Stacey From Rare Patient Voice on Her Path to Advocacy

    Stacey From Rare Patient Voice on Her Path to Advocacy
    Jul 16 2025
    Stacey is seemingly living the dream. Working as a social media manager and patient advocate for Rare Patient Voice, she balances work with being a wife, mother, dog mom, caregiver, and pursuing her goal of a happy healthy home on the islands of Hawaii. For most people the normal struggles with preparing for your oldest to graduate high school and your youngest to enter middle school are enough. Stacey has taken on those challenges as well as health related twists and turns, not only with herself, but also her daughter. Stacey and her daughter Iris had parallel health crises on the small island that they call home. When her daughter was just 4 days old she had blood in her diapers and that started a journey that ended in an overnight flight to Children's Hospital of Philadelphia (CHOP). She was eventually diagnosed with Crohn’s Disease around her third birthday. This, alongside allergies to dairy, tree nuts, peanuts, and eggs made her growth and development an uphill battle for much of her childhood before current treatments like biologics proved more effective. Before her daughter's diagnosis Stacey had been thinking her fatigue was just the stress of working and raising two kids. That was until the day she found a lump in her neck and was quickly diagnosed with thyroid cancer. Thankfully surgery was quick and successful, but the long term effects of having half of a thyroid continue to this day. These experiences have led Stacey to the position she holds now, working for Rare Patient Voice. They work to connect patients with rare diseases and companies looking to do focus groups and surveys about the lived experience of people with rare and chronic illnesses. This work connecting patients to paid opportunities to share their experiences as well as acting as a patient advocate has allowed Stacey to use her personal experience to create community around the world, centered around health challenges that people often experience in isolation. Use our affiliate link to sign up for Rare Patient Voice at https://rarepatientvoice.com/MajorPainPodcast PlayWatch the episode on YouTube, listen on your favorite podcast platform or here on this website!
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    1 h y 5 m
  • Brenda Snow, Author of ‘Diagnosed,’ On Her MS Journey

    Brenda Snow, Author of ‘Diagnosed,’ On Her MS Journey
    Jul 2 2025
    Brenda Snow was diagnosed with relapsing multiple sclerosis (MS) in the early 1990s, during an era when treatment was minimal and the condition was poorly understood—a time often marked by a 'diagnosis and adios' approach. Like many facing chronic illness, her diagnostic journey was filled with medical gaslighting and doctors refusing to listen. But her journey reveals a deeper truth: one of self-advocacy, strength, and rewriting the narrative of what hope within chronic illness looks like. Brenda went on to lobby for the landmark Kassebaum-Kennedy Bill in 1996, challenging stigma and sparking systemic change. She’s the founder and CEO of Snow Companies, a leading patient engagement agency, and author of Diagnosed: The Essential Guide to Navigating the Patient’s Journey—a compassionate roadmap for anyone facing a life-changing diagnosis. At the time Brenda was diagnosed with relapsing MS, there were no FDA approved treatments. With limited medical guidance, her family became her lifeline, stepping in to support both Brenda and her young daughter. The first symptoms Brenda experienced were vision changes and extreme, overwhelming fatigue as her body felt like concrete. As the disease progressed, she lost sensation in her left foot and leg, making walking increasingly difficult. A few months after diagnosis Brenda lost function from the waist down, utilizing adaptive devices to maintain daily living activities. She was among the first patients to receive treatment for relapsing MS, and by the seventh month after diagnosis, her symptoms began to stabilize. Although neurological deficits—such as optic neuritis, spasticity, tremors and left-sided weakness—persisted, Brenda approached her condition with determination. Brenda learned how to manage the recurring symptoms and reclaim agency over her life. In this episode of the Major Pain Podcast, Brenda Snow shares insights from her book, offering inspiration and practical guidance to those navigating the emotional terrain of diagnosis. Her work serves as both a roadmap and a lifeline—helping patients understand what to expect, how to build a life of purpose, and how to keep moving forward as a patient patient anchored by the thread of hope. Find Brenda's book on her website: https://brendasnow.com/ PlayWatch the episode on YouTube, listen on our website, or on your favorite podcast platform.
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    59 m
  • Joan of Heart From Pedal Playhouse on Her Complex Medical Journey

    Joan of Heart From Pedal Playhouse on Her Complex Medical Journey
    Jun 11 2025
    Joan, or as she is better known on the internet Joan of Heart, is an enthusiastic content creator who is best known for her YouTube channel Pedal Playhouse. There she shares her passion for effect pedals not just by reviewing them, but demonstrating what they are capable of along with a healthy mix of comedic animations to keep the video fun and interesting. Joan actually started her channel in response to her ongoing health issues. She has a unique combination of gastrointestinal issues that have left her struggling with doctors to get a proper diagnosis, debating treatment options and dietary concerns. A silent form of GERD (gastroesophageal reflux disease), that lacks the usual heartburn, has damaged her esophagus over the years leaving her with Barrett’s Esophagus (a stiffening of the lower esophagus due to chronic acid exposure). She also has absent esophageal contractility leading to dysphagia or trouble swallowing. Combine both of those with a hiatal hernia where the stomach slides up through the opening in the diaphragm and she has a potent cocktail of issues that antacids, proton pump inhibitors, and sleeping on a wedge pillow can only partially alleviate. In this episode of the Major Pain Podcast, Joan shares her passion for music, media creation, the National Association of Music Merchants (NAMM), in addition to her story of diagnosis and struggles with both mental health and physical illness. Facing difficulty convincing doctors and preparing for corrective surgery, she tries to share her story to help others who may have the same struggles. She reflects on her personal journey as she tries to live up to her sign off line for her videos, “be the good you wish to see in the world”. Check out Joan of Heart at the Pedal Playhouse! https://www.youtube.com/@PedalPlayhouse PlayWatch the episode on YouTube, listen here on the website, or on your favorite podcast platform.
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    1 h y 13 m
  • Art Therapy and Mental Health Care for Chronic Illness Patients

    Art Therapy and Mental Health Care for Chronic Illness Patients
    May 22 2025
    Bonnie is a licensed marriage and family therapist in Washington state as well as a nationally registered and board certified art therapist. As an undergrad in psychology and art, Bonnie knew she wanted to help people but was initially hesitant to take on the graduate school needed to become an art therapist. After years of working with organizations helping connect people with the resources they needed, Bonnie was tired of referring clients to others for help and took the plunge on her own education. After 3-4 years of grad school and 2 more years of post graduate training she was able to provide art therapy services to those in need, with a focus on chronic illness and cancer care. She now works with adults providing art therapy services to help those with chronic conditions process their experience in a new way. Alongside Katie, another therapist working with patients with chronic pain (including the host of this program), Bonnie co-founded Dream Big Wellness. This 501(c)(3) nonprofit organization was dedicated to helping people with chronic pain, chronic illness, and cancer care access art therapy and mental health care services as they navigate the healthcare system. Today, with a team of 7 clinicians and 4 board members, they provide services to Washington state focused in the Seattle area. Through Dream Big Wellness, they provide unique opportunities for patients to express their emotions, struggles, and symptoms using art instead of words. This process can often help find new ways to express hard to convey truths and a new way to think about experiences through different perspectives. In this episode of the Major Pain Podcast we talk with Bonnie about the many benefits of art therapy and mental health care for those dealing with loss, grief, depression, post traumatic stress disorder (PTSD), and anxiety. Chronic illness can be such a large part of a person's lived experience, and art therapy can help escape that sense of isolation. Patients can gain understanding of their own experiences and new ways to communicate them to loved ones and care providers alike. Connect with Dream Big Wellness online at https://www.dreambigwellness.org/ While Dream Big Wellness serves patients within Washington state, there are many great organizations throughout the rest of the US. Arttherapy.org, the Art Therapy Credentials Board (ATCB.org), the American Psychological Association (APA.org), and Psychology Today all provide ways to find the right therapist for you. Podcast editing and write-up by Casey McKenzie. PlayWatch on YouTube or listen on your favorite podcast platform.
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    49 m