Major Pain

Sydney Anne Bennett lives with functional neurological disorder (FND), which is a condition where the brain doesn’t communicate properly with the nervous system. Sydney's symptoms include chronic pain, hallucinations, loss of taste, trouble sleeping, hand paralysis, seizures, ataxia, muscle spasms, fatigue, and difficulty using her legs. Consequently, after a year of fighting symptoms and multiple emergency room visits, emergency room doctors referred her to a neurologist who diagnosed her with FND. 

Sydney shares her experience with a neurologist who indicated that her symptoms were due to past trauma and that she was “just stressed out.” The neurologist referred her to a psychiatrist and canceled further imaging despite finding unusual white matter in her brain. Following her own research on functional neurological disorder, she recognized that FND is not simply a stress response. Rather, FND is a real disease indicative of dysfunction in the connection between the brain and the nervous system. Moreover, Sydney consulted with a different neurologist. The neurologist also confirmed the FND diagnosis after a detailed workup with brain and spine scans and ruled out multiple sclerosis. Sydney accepted the condition and worked on symptom management once she recognized that this diagnosis wasn’t in her head or brought upon herself.

In this episode of the Major Pain podcast, Sydney discusses her chronic illness journey with functional neurological disorder as a new mother. She shares her initial insecurity and then acceptance of using mobility aids to navigate her symptoms and to improve quality of life. Further, she reveals her process of gaining confidence by changing her mindset about disability. On social media, Sydney has become an advocate for people with FND. Additionally, she has found connection and community, and works to break the stigma of FND, disabilities, and mobility aids. Through confidence and faith, Sydney is making the best of her journey with FND.

Connect with Sydney Anne Bennett on her website: https://sydneyannebennett.com/

Kyle Ayers is a well-known comedian, famous for his podcast 'Never Seen It' in which comedians re-write a scene from a show or movie they've never seen. Kyle is also living with a severe chronic pain condition called trigeminal neuralgia. When he was first diagnosed with this condition he was initially happy, having finally found an explanation for the severe right temple pain that had been plaguing him for the past three years, a pain that had confounded doctor after doctor. But when Kyle began to research trigeminal neuralgia and discovered that people online were calling it the 'suicide disease,' his relief at getting a diagnosis was short-lived.

Doctors don't know what triggers the trigeminal nerve in the face to start jumping around, causing the electric shock-like sensations that are typical in trigeminal neuralgia. Unfortunately, when this condition is triggered it is remarkably difficult to manage. There is a procedure called microvascular decompression that can be helpful, but as Kyle learned first-hand this relief can be temporary.

https://youtube.com/shorts/9Z6Ywc8XpCg

In this clip, Kyle Ayers describes what trigeminal neuralgia feels like.

In this episode of the Major Pain podcast, Kyle talks us through his journey with trigeminal neuralgia. He discusses the difficulty in getting a diagnosis, his experience with microvascular decompression and the medications he has tried. One of his coping mechanisms is performing comedy, and he has recently been working on a new stand-up show that centers around his experiences with trigeminal neuralgia, which he will be performing at the 2024 Edinburgh Fringe Festival.

Check out Kyle's podcast and other work on his website: http://kyleayers.com/

Rho has a self-described laundry list of diagnoses, and she has had to fight for every single one. Her list includes autism, ADHD, bipolar 2, CPTSD, excoriation disorder, keratoconus, IBS, GERD, chronic kidney disease, tactile allodynia and chronic pain. Along the way she faced constant medical gaslighting and dehumanizing treatment, with doctors more likely to brush her off than provide appropriate care, and a lack of support from her family. Of her journey to uncover these many diagnoses, Rho says, "It's been a long difficult fight to get to where I am now. I'm pretty proud of where I've gotten."

In this episode of the Major Pain podcast, Rho walks us through her chronic illness journey while defining her rare illnesses like allodynia and keratoconus. Her chronic pain remains a frustrating mystery, since doctors have yet to pin down a cause or provide relief. The pain is focused in her extremities, particularly her hands and traveling from her hips to her knees. Rho wonders whether there may be an underlying cause yet to be found that may shine a light on her situation. While pursuing answers she is also fighting to get on disability, which is another uphill battle. She discusses how chronic illness has touched every corner of her life, reflecting on the good and the bad that has come from these health challenges.

Rho also tells us about her work with Mask Bloc Seattle, a mutual aid organization providing respirators and masks to people in need. Learn more: https://linktr.ee/maskblocseattle

Host of Major Pain Jesse Mercury has just released his synthpop album 'SciFi' on all major streaming platforms! The album features his song 'Time Machine,' which you may recognize as the theme music from Major Pain. Click here to listen: https://tr.ee/t-TPmnAIRh

This week on the Major Pain podcast we speak with Diane Strand, founder of the nonprofit JDS Creative Academy, which offers training and job placement in the entertainment industry to people with disabilities. JDS caters to individuals with a passion for creativity who hope to turn this passion into a career. Diane has created a unique job placement program, finding internships for her students while providing a salary and job coach for the first year of employment, in the hopes that these employers will retain JDS students indefinitely. The JDS Creative Academy also works to foster inclusivity, and train employers about the adaptive needs of their students.

In this podcast interview Diane will tell us about her organization and her vision to bring programs like the JDS Creative Academy to communities everywhere. She tells us about the film, TV, radio and stage productions her students are involved in. She also reflects on the importance of the arts, and the impact of arts education on the students her program has served.

Diane Strand is an award-winning Executive Producer at JDS Studios and the TV show Spirit of Innovation, the first Riverside County local news and information program. She is the majority owner of JDS Video & Media Productions, Inc / JDS Actors Studio and the founder of nonprofit JDS Creative Academy, she is also a published author who talks about entrepreneurship, and providing pathways for career opportunities in the visual, performing and digital arts.

Learn more about the JDS Creative Academy: https://jdscreativeacademy.org/

Cianna has been a dancer her whole life, saying "as soon as I could walk I was dancing." Over the past few years chronic illness has altered her life's course, and frustratingly taken her away from dance. While it has been difficult to leave her life's passion behind, Cianna has learned to cultivate gratitude for the things she is still able to do, while redirecting her path in new directions.

Cianna's health journey began at 15 years old when she underwent multiple surgeries for hip dysplasia. A few years later she discovered she has a type 1 Chiari malformation in her brain, which would eventually require decompression surgery in which doctors removed a piece of her skull. She has also had to fuse her skull to her C3 vertebrae to combat craniocervical instability, and been diagnosed with the connective tissue disease hypermobile Ehlers-Danlos syndrome.

In this episode of the Major Pain podcast, Cianna talks us through her health journey while teaching us about her rare conditions. She discusses the complexity of having to leave dance behind, and the deep frustrations of seeking help from doctors who wouldn't believe her symptoms were real. However, she also acknowledges that good things have come from her challenges, including an enhanced sense of gratitude and newfound passion for helping others in similar situations.

Connect with Cianna on Instagram @CiannasJourney

Kenny Alhadeff first appeared on the Major Pain podcast 3 years ago, sharing his experiences living in recovery from drug addiction and alcoholism. This year Kenny will celebrate his 40th year of sobriety. Since first appearing on the show Kenny has experienced the most intense chronic pain of his life, been diagnosed with ADHD in his mid 70s and developed a rare condition called polymyalgia rheumatica. Today he returns to the podcast to update us on his health journey.

Polymyalgia rheumatica is a chronic pain condition affecting approximately 50 out of every 100,000 Americans, generally over the age of 50. When Kenny first started to develop symptoms of aching all over, he thought it was due to aging. But when he developed severe swelling in his hands and could no longer hold a golf club, he began to suspect something more was at work. He was soon diagnosed with both polymyalgia rheumatica and rheumatoid arthritis.

On this episode of Major Pain, Kenny talks us through his new diagnoses and the treatment plans he is utilizing. Along with sharing his updates, Kenny and podcast host Jesse discuss how Jesse's chronic illness has impacted their relationship. Kenny is the father to Andi, Jesse's fiancee. During the first 6 years of Jesse and Andi's relationship, Jesse's health was severely impacted by his then mystery illness. This led to a critical misunderstanding between Jesse and Kenny about the potential future of his relationship to Andi. Thankfully this misunderstanding was discovered and resolved, and this podcast recording provided a unique opportunity to share how chronic illness can impact a family circle.

This week on the Major Pain podcast we are joined by NYU Professors and psychoanalysts Dr. Avgi Saketopoulou and Ann Pellegrini to discuss the intersection of trauma and gender, as discussed in their book Gender Without Identity. They propose a new theory of gender development, that gender is something all people develop in relationship to trauma, rather than an intrinsic identity we are born with. Their book seeks to shed light on the complex tapestry of experiences that shape one's gender expression and perception.

Dr. Avgi Saketopoulou is a psychoanalyst in private practice in NYC and a member of the faculty at the NYU Postdoctoral Program in Psychotherapy and Psychoanalysis. She is the author of Sexuality Beyond Consent: Risk, Race, Traumatophilia from the Sexual Cultures Series (NYU Press). Visit her website at https://www.avgisaketopoulou.com/

Ann Pellegrini is Professor of Performance Studies & Social and Cultural Analysis at New York University, and a psychoanalyst in private practice in New York City. Their previous books include Performance Anxieties: Staging Psychoanalysis, Staging Race (Routledge, 1997) and the 2014 Lambda Finalist in Best LGBT Non-Fiction You Can Tell Just by Looking and 20 Other Myths About LGBT Life and People, coauthored with Michael Bronski and Michael Amico (Beacon Press, 2013). Find them online at https://annpellegrini.com

Jamie is a social media chronic illness advocate under the handle @LoveWarriorHugs, but her advocacy extends beyond social media. She is an epilepsy ambassador with the National Epilepsy Foundation, and she's also been involved in successfully lobbying to change pain management laws in Illinois. Her passion for advocacy stems from her own experience living with five chronic illnesses, asthma, epilepsy, multiple sclerosis, trigeminal neuralgia and IBS.

On this episode of the Major Pain podcast, Jamie discusses her chronic illness journey. The illness that currently affects her the most is trigeminal neuralgia (TN), which causes daily facial pain. Jamie walks us through how this disease works, the many treatments she has attempted and the link between TN and MS. She discusses how her diagnoses have interwoven with her life, including the difficulty of balancing chronic illness with motherhood and how her passion for advocacy was sparked.

Rasheera Dopson, host of the Womanhood & Disability podcast, is an accomplished author, public speaker and advocate spreading her messages of justice, disability empowerment and awareness. She came by this work through her own experience living with two rare syndromes, both caused by her being born about 5 months premature. It took over 100 surgeries to fill in the gaps where Rasheera's body was underdeveloped at birth.

Rasheera's rare conditions are both visible and invisible. Her visible diagnosis is a craniofacial condition called Goldenhar, which involves the right side of her face being underdeveloped. She was born without a right jaw bone, and has had around 30 reconstructive surgeries on her jaw alone. The invisible condition is called VATER syndrome, which is a group of growth abnormalities affecting a fetus in early development. VATER is an acronym for the body parts that can be affected by this condition, vertebrae, anus, trachea, esophagus and renal (kidney). The heart and limbs can also be affected.

In this episode of the Major Pain podcast, Rasheera talks us through her journey from patient to activist. She discusses the unique challenges faced at different periods in her life, first enduring countless surgeries as a child and teenager, and then finding her place in the world as a young adult. She teaches us about her rare diseases, and discusses the road that led to her activism and advocacy work.

Connect with Rasheera on Instagram @RasheeraDopson

We're kicking off the fourth season of Major Pain by catching up with previous guests! Michelle and Bek both have new diagnoses that are recontextualizing their journeys, while Simon is feeling completely cured.

As Major Pain enters its fourth season, now is a great time to support the show on Patreon! Subscribe for monthly bonus episodes, special recognition and gifts when you sign up. Learn more at https://www.patreon.com/majorpainpodcast