Episodit
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Dogs are unspoken healers. For some, they offer companionship, to others they act as an essential lifeline. In this episode, two women living with chronic illness explore the joy and purpose dogs brought into their lives. Morgan was born with spastic diplegia cerebral palsy, while Jennifer developed debilitating autoimmune diseases. For Morgan, her service dog Dewey became her reason to get out of bed every day and gain more independence. For Jennifer, a desire to bring joy to others caused her to found Pile of Puppies, a non-profit that connects puppies to children living with chronic illness. The two discuss the remarkable abilities dogs have, and the times they’ve witnessed their comfort and healing firsthand. Dogs are the beautiful blessing that taught them that joy and light can always be found, even in hardships.
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Dads are often likened to superheroes. Tireless providers and valiant protectors, they’ve rightfully earned the comparison. Some dads, however, are actual superheroes fighting battles every day. Single dad Anthony Sanchez visibly dons his cape, while dad Brian Langhans wears his costume underneath. Despite different journeys, both men uncovered their powers in a similar way – through a sudden, life-changing disability. Brian was diagnosed with Crohn’s disease after a car accident, while Anthony was paralyzed from the chest down after a motorcycle accident. It was at rock bottom that they discovered inner strength and an outward purpose of being role models for their children. In this episode, Brian and Anthony discuss the steep learning curves that came with their disabilities. Brian had to learn how to balance fatherhood and work with an unpredictable body. Anthony had to figure out alternatives to once simple tasks from the confines of his wheelchair. Together the two discuss how a shift in mindset and the desire to be a role model for their children empowered them to turn their can'ts into cans. Anything is possible with a little faith, determination and most importantly, support. Even the greatest superheroes need help too.
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HIV/AIDS, mental illness, and activism. Three topics rooted in stigma that become more complex when they intersect with another taboo topic – women. Not many dare to step into these challenging arenas, but for two prolific activists, Dawn Averitt and Melody Moezzi, fighting for better care for women has been their life’s work. In this episode, Dawn and Melody share their parallel journeys into activism. What started as a small flame at an early age ignited into full-blown passion for advocacy after they received life-changing diagnoses. Dawn was diagnosed with AIDS. Melody with Bipolar disorder. Both didn’t have access to the proper care they needed and were forced to fight for it, turning their rage into action, developing needed programs, and raising awareness that has helped transform the lives of countless women living with HIV/AIDS and mental illness. Together, they discuss the importance of destigmatizing activism. They talk about how activism does not require big, heroic actions, but rather small steps that can create a ripple of change across our shared humanity.
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Having a chronic illness as a young adult can be isolating. Healthy peers don’t understand and the medical world feels designed for older people. Then one day, you find people like you online. These online communities weren’t always there – a few brave pioneers paved the way for these safe spaces to take flight. In this episode, Stefanie Grant and Jenny McGibbon discuss how they started sharing their health journeys online in their early 20s. For both Stefanie, who has facial pain disorders and Fibromyalgia, and Jenny, who has Myalgic Encephalomyelitis (ME) and Short Bowel Syndrome, their blogs began as a personal outlet during a time they felt alone in their health battles. As their journeys evolved, so did their blogs, becoming online communities that now serve thousands. Together, they discuss their responsibilities as leaders within the space, the delicate balance that exists between positivity and authenticity, and how they attempt to hold space for others while recognizing everyone has a different lived experience.
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Most of us don’t like to think about the end until we’re forced to. In this episode, two men suddenly confronted with their own mortality talk about the grace they found on the other side of suffering. Dylan, a writer and Chinese medicine doctor, was diagnosed with ALS in 2017. Pierre, a Buddhist Chaplain specializing in end-of-life care, was diagnosed with stage 4 cancer. Together, the two discuss the transformative growth and meaning they found when they learned to let go and embrace their circumstances. Sometimes the greatest lessons in life come from the greatest hardships; it’s our choice whether we’re open to receiving the beauty that blooms from pain.
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Sometimes our heroes aren’t legendary figures, they're the ones right in our home. Bethany Cook’s world shattered when she was diagnosed with Narcolepsy and Cataplexy on the brink of young adulthood. Her mother, Tamara Cook was there to catch her as she fell into grief. As Bethany faced loss of identity, Tamara dealt with the loss of loved ones. Together the two have marched side-by-side in the battlefield of life while caring for each other’s needs. In this episode Bethany, a grad student pursuing psychology, and her mother Tamara, founder of the nonprofit Heart 4 Children, dive into their unbreakable bond that developed out of an unexpected place: mutual suffering. Tamara explains how she was able to draw on her own life experiences to be the compassionate caregiver her daughter needed. Bethany recounts the ways her mother was a steady anchor during turbulent times with her chronic illness, offering just the right balance between encouragement and listening. It’s an intimate conversation on grief, acceptance and what it looks like to care for others in their time of need.
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The number of illnesses that qualify as mysterious is staggering. They also predominantly affect women. In this episode, author Sarah Ramey and Physician Assistant and professor Brianna Cardenas draw from a well of wisdom as patient advocates with mystery illnesses to explore the gender inequities, biases, and systemic barriers to getting proper care. They discuss how patients must stand their ground in seeking proper care within a broken healthcare system that often tells us it's all in our heads. With no magic bullet to “slay the dragon” these women are reframing the heroes’ journey into the heroine’s journey – a process of drawing strength and wisdom from the darkness and emerging to guide others into a new paradigm that recognizes the value of being unfixed.
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Life is traumatic. But some of us get an extra whopping dose of it, especially before we've learned tools to help us navigate. In this episode, our guests explore the connection between the nervous system and chronic illness – how being stuck in fight, flight or freeze can lead to long-term physiological consequences. Former family physician and trauma specialist Veronique Mead and trauma survivor Kristy Boyd share their research and personal stories living with chronic illness, illustrating that it's not “all in your head.” Together they explore the nuances and types of triggering events that can reawaken early physiological patterns and how to befriend our way to a healthier life, despite traumatic events.
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Tessa and Zoe don't just share the same last name. At only 9 years old, Zoe “pooped in a blender” to save her aunt Tessa's life via fecal transplant. Today, Zoe is a high school student with her sights set on medical school alongside managing her own disability of hearing loss, and Tessa just published her first book that offers solidarity and wisdom from her rollercoaster ride with Crohn's disease. In this episode, Tessa and Zoe open up about their donor-recipient relationship, the deep insights they’ve gleaned from each other’s physical challenges, and the fine line patients walk in not over-identifying with their disease while not living in denial of it. They discuss how acceptance ebbs and flows in their lives, at times leaning more into fixing, and late-night doom scrolling, while at other times embracing what is and advocating for what's right.
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Todd is a competitive rower who medaled at the US National Championships and is now training to qualify for the 2021 Paralympics. Susan is also a competitive rower, became an Olympic coach in 2004 and also a photographer and painter. Susan is also a competitive rower, became an Olympic coach in 2004 and also a photographer and painter. They currently share most days together in training. They were also both diagnosed a few years ago with degenerative diseases. Todd is learning to strike the balance between toughness and rest… something that has taken on new meaning post-Parkinson's. And Susan, as his coach, looks to find workarounds to the challenges his body presents while learning to adapt to her own limitations with Multiple Sclerosis. The two seasoned athletes explore how training fits into life with chronic illness, how the meaning of strength has changed for them, and how all of us can adapt and find creative solutions to life’s obstacles.
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Dr. Annie Brewster is an internal medicine doctor, founder of Health Story Collaborative and professor at Harvard. Rachelle Alford is a former ER nurse, dancer and artist. Both live with chronic illnesses. Both strongly believe in the transformational power of sharing one's story. Story-telling heals. And by healing, we mean it empowers, connects and helps us find purpose and meaning through some of the hardest of times. When a doctor delivers a diagnosis, it’s usually the end of the story. But for the patient, a diagnosis is just the starting point. A patient must walk away and begin the long, winding journey of integrating this diagnosis into their life, relationships and identity. In this episode, Annie and Rachelle explore the power of patient narrative from the perspective as patients and as providers. Through sharing their health narratives and encouraging others to do so, they explore how they are turning their messes into messages, the barriers to listening and sharing in our current healthcare system, and how the process of story-telling helps us identify and articulate the new-found strengths and perspectives that are born from our brokenness. Research shows that storytelling is healing for both story sharers and listeners. The trials we endure could be someone else’s survival guide and ultimately remind us all that we are not alone.
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After being diagnosed with transverse myelitis, CEO of the Argosy Foundation, Jeneye Abele, turned to comedy as a lifeline while adapting to the unpredictable and demanding nature of her medical condition. Like a magic pill, she finds laughter helps her transcend physical discomfort. In this episode, she talks with Dr. Joel Goodman, Founder and Director of the HUMOR Project, about how laughter can help carry us through the most difficult times. Together, they reflect on how an attitude of humor doesn't mean you have to be a comedian. The simple act of choosing to laugh at ourselves and see things with childlike curiosity and light-heartedness can give us perspective on otherwise overwhelming situations. Positive humor connects us, builds confidence and has various healing properties. And bonus, it just feels darn good to laugh.
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Webster dictionary defines sustenance as a “something that gives support, endurance, strength.” In this episode, award-winning author and speaker Elissa Altman joins writer, speaker and disability advocate Elizabeth Jameson as they discuss the role of sustenance in their own lives. It is safe to say, this bedrock of support has been stripped from both of them in unique ways throughout their lives. Elizabeth, through the disease progression of MS that has her now living as a quadriplegic. And Elissa, through a contentious and traumatic relationship with her mother's mental illness. Together, they both reflect on what it takes to transform lack into abundance and bitterness into generosity of spirit.
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Receiving a diagnosis is equally as difficult for those who love us. In this episode, we speak with two caregivers who provide their perspectives on what it was like to get that diagnosis for their child, how they initially responded, and how they went on to find community and care for themselves so they could be the best caregiver possible. We also speak with a licensed mental health counselor who talks with us about how any caregiver can address feelings of helplessness, how to support a loved one effectively, and the importance of practicing self-care to avoid burnout.
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What does it take to own our illness? Why are some people more able to transform a not-so-great situation into something inspiring? In this episode, we speak with three guests who have been able to take their diagnoses and make the most of them to help themselves and others. We also speak with a clinical psychologist who specializes in the characteristic all three guests share – resilience – and who helps us understand the ways we accept our flaws and doubts in order to change the way we see ourselves and ultimately thrive with chronic illness
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Whether you’re in a relationship or not, you know the unique challenges of finding and maintaining partnership when living with an illness or disability. From the way we see ourselves, to the way others see us, love is both a personal and interpersonal experience. Many find themselves unattractive, burdensome, or unworthy of this basic human need when seeking a companion. Others struggle to communicate effectively while in a relationship. In this episode, we present you with all angles by sharing stories of those in relationship and out. Our guests touch on the ways expectation, communication, trust, and self-worth play into seeking and sustaining a healthy relationship despite illness, disability, or caregiving. We also speak with a couples’ therapist who explains the science behind relationships, advice for those looking for a relationship, and ways to ensure your current relationship is equipped to deal with adversity.
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At some point, we've all experienced how art can transform our state of mind. Whether it is through painting, poetry, or pottery, art is one of the oldest tools for soothing our souls and communicating. In this episode, we share the stories of three artists who use art to cope with chronic illness and channel their feelings in a variety of ways. We later speak with an art therapist who discusses the therapeutic nature of creative expression, how art-making helps us be more present, and why it is such a powerful tool for those living with health challenges and caregivers.
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We made this special episode in an effort to support our community through the many changes and challenging emotions the COVID-19 outbreak stirs up. Pre-existing health conditions, accessibility, and caring for others have been central themes of the coronavirus pandemic. Those most vulnerable (or caring for those most vulnerable) are taking great precaution, and are faced with great fear and frustration. In this episode, we provide you with an outlook on managing that fear – one that might allow us to see the coronavirus as a catalyst for slowing down, stepping back, and prioritizing self-care. We virtually sat down with Dr. Selma Nemer, a clinical psychologist with a wonderful perspective on the many ways this pandemic can ease our health and play a role in healing, both personally and globally. Dr. Nemer closes the episode with a helpful exercise of deep meditative breathing to start easing anxiety and boosting our immune systems.
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Self-compassion has become a widely studied and embraced method of extending kindness not just toward our current circumstance, but toward ourselves while experiencing it. Self-compassion is an appealing practice for those living with illnesses and disabilities as it releases common criticisms, shame, and feelings of imperfection while building a sense of understanding and acceptance. For caregivers, self-compassion helps avoid burnout, in effect nurturing the relationships with those we care for. In this episode, we speak with three guests who found the benefits of compassion during their journeys with Familial Adenomatous Polyposis (FAP), Multiple Sclerosis, and caring for a loved one with Lyme Disease and chronic pain. We also speak with Dr. Ann Saffi Biasetti, a somatic psychotherapist using the science of Mindful Self-Compassion (MSC) to help soothe critical thoughts (especially towards our bodies) and reclaim a loving connection with ourselves. Ann closes this episode with a meditative self-compassion practice to start reducing inner criticism right now.
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