FIGHTING FORWARD: MARISSA’S JOURNEY WITH CHRONIC ILLNESS
EPISODE NO. 64
in this episode:
In this episode of Redefining Resilience, Chris and Kiley sit down with Marissa Hendrickson to explore her incredible journey of resilience.
Growing up, Marissa was always the “sick kid,” constantly dealing with fevers, infections, and headaches. After experiencing fainting episodes and heart palpitations, a diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome) was made. Later, multiple sprains and six knee surgeries led to a diagnosis of Ehlers-Danlos Syndrome.
In August 2022, debilitating migraines, numbness, and difficulty breathing began to take a toll. As a woman, she was accustomed to being dismissed as having “anxiety” and attempted to push through. However, on October 13, 2022, her left arm and fingers went numb while at work. Multiple scans that night revealed an inoperable syrinx in her spinal cord (C5-T2). Since then, she has lost feeling in her left leg and fingers on her right hand, now relying on a cane to prevent falls. A second syrinx was later discovered at T4-T5, with the affected nerves impairing her diaphragm, leading to a seven-day stay on a ventilator in August 2023.
Over time, she was also diagnosed with Chiari Malformation Type 1, Gastroparesis, and MCAS. Despite consultations with leading neurosurgeons who deemed surgery too risky, an EDS geneticist referred her to a specialist in Cincinnati, who approved her for surgery—a high-risk chance to improve her quality of life.
Athletics, particularly basketball and golf, played a significant role in her childhood and college years. The story of Bobby Jones, the golf legend forced to retire due to syringomyelia, deeply resonates with her. Reflecting on her own physical limitations, she longs for the days when she could swing a club without restraint.
While the future remains uncertain, she is determined to keep fighting, loving, and living despite the pain and fear.
Marissa’s Instagram: youre_not_onyourownkid
Marissa’s Tik Tok: mar_ynoyok
Bobby Jones Foundation: https://bobbyjonescsf.org/
Learn more about syringomyelia here:
https://youtu.be/VpcDoutwbQ8
https://youtu.be/xrNUO1SdWhQ
https://youtu.be/fbInvgsHDMI
we talk about:
01:35 - What’s going on in Marissa’s life
22:50 - Marissa’s everyday life
42:05 - What Marissa would say to able-bodied people
46:48 - How to stay positive
01:00:00 - How to not fall into a victim mindset
01:02:00 - How to support Marissa’s cause
01:10:00 - Marissa’s prognosis
