Ho'omau: Joey's Journey | National Geographic

Key Concepts

• Chronic Inflammatory Demyelinating Polyneuropathy (CIDP): A rare autoimmune disorder characterized by progressive weakness and sensory loss in the limbs due to damage to the myelin sheath of peripheral nerves.
• Ho'omau: A Hawaiian concept encompassing perseverance, resilience, and the continuation of traditions.
• Self-Advocacy: The act of speaking up for one's own needs and rights, particularly in healthcare.
• Agroforestry: A land-use system that integrates trees and shrubs with crops and/or livestock.
• Food Sovereignty: The right of peoples to healthy and culturally appropriate food produced through ecologically sound and sustainable methods, and their right to define their own food and agriculture systems.
• Myelin Sheath: The fatty insulating layer that surrounds nerve fibers (axons) and speeds up the transmission of electrical impulses. Demyelination is the loss of this sheath.
• Nerve Conduction Study (NCS): A diagnostic test that measures how quickly electrical signals travel along a nerve.
• AFO (Ankle-Foot Orthosis): A brace worn on the ankle and foot to support and control the position and motion of the ankle and foot.

Joey's Journey of Resilience and Rediscovery in Hawaii

This video chronicles Joey's transformative journey to Hawaii, guided by National Geographic photographer Joshua Cogan. Joey, who was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) in 2020, faces significant physical challenges, including numbness, weakness, and pain. The narrative highlights his past as an active individual, a volunteer firefighter, and a law enforcement officer, contrasting it with his current reality and his determination to reclaim his life and explore new possibilities.

1. The Diagnosis and Its Impact

• Onset of Symptoms: Joey's physical challenges began subtly around 2013 with ankle rolls and progressed to noticeable weakness and numbness by 2020. He experienced difficulty feeling the floor, leading to stumbling.
• Diagnostic Process: After multiple doctors were unsure of the cause, Joey underwent a gamut of tests, including a nerve conduction study. This study revealed nerve deterioration, leading to his CIDP diagnosis.
• CIDP Manifestations: Joey describes the condition as his nerves deteriorating or demyelinating, causing numbness, sharp shooting pain from hip to leg, and difficulty with fine motor skills like opening jars. The weakness and lack of feeling in his feet significantly impacted his mobility.
• Emotional and Social Impact: The diagnosis brought fear and uncertainty about his future, particularly the possibility of losing his ability to walk or travel. Giving up his volunteer firefighting role was a humbling experience. His wife, Michelle, notes a nervousness in him she hadn't seen before, stemming from this uncertainty.

2. The Hawaiian Adventure: Embracing New Experiences

Joshua Cogan, a National Geographic photographer and anthropologist, felt compelled to meet Joey after hearing his story. He saw Hawaii, with its dynamic landscapes and vibrant culture, as the perfect setting for Joey to break out of his patterns, reconnect with himself, and test his limits. The journey embodies the Hawaiian concept of "Ho'omau," meaning perseverance and resilience.

2.1. Reconnecting with the Ocean: A First Step

• Sea Turtle Encounter: Their first immersive experience was at a national historic site to observe green sea turtles (Honu). This marked Joey's first time in the water in three to four years, as walking on sand had become nearly impossible.
• Overcoming Hesitation: Joey, wearing his AFO (Ankle-Foot Orthosis) to support his foot, expressed readiness to try. Joshua guided him, ensuring they proceeded at a comfortable pace.
• Symbolism of the Turtle: Joey revealed a tattoo of a turtle on his leg, explaining it's a mascot for CIDP, symbolizing a steady pace and the importance of moving forward.
• Emotional Significance: Reentering the ocean, surrounded by sea turtles, was described as a moment of quiet perseverance. Joey expressed immense joy, stating, "It's so great. Haven't been in the water in years, so this is great."

2.2. O.K. Farms: Land Resilience and Community Connection

• Agroforestry and Food Sovereignty: Joshua and Joey visited O.K. Farms, a multi-generational organic farm focused on land resilience and native Hawaiian food products. Ka'ikena Scanlan explained the significance of crops like 'ulu (breadfruit) as staple foods that can sustain communities for generations, connecting to Hawaiian food sovereignty and ancestral practices.
• Soil Regeneration: The farm utilizes invasive brush to create microorganisms and add nutrients back into the acidic volcanic soil, highlighting the importance of unseen processes in land healing.
• Community and Hope: Joey found the farm's dedication to community and land care deeply connecting to hope, drawing parallels to the CIDP community's journey of putting "one foot in front of the other." He emphasized the importance of community support and the GBS CIDP Foundation for information and guidance.
• Sensory Awareness: While touching cinnamon leaves, Joey noted the return of sensation, describing petting his dog as a "completely different thing" and how sensory systems interpret the world. The slow pace allowed for expanded awareness in small moments.

2.3. Swimming with Giant Reef Mantas: Pushing Boundaries

• An Otherworldly Experience: The next adventure involved swimming with giant reef mantas, some up to 18 feet wide, at night. This pushed Joey further outside his comfort zone, as he had previously avoided swimming in the ocean at night.
• Navigating Challenges: Joey acknowledged his hesitation due to the difficulty of walking without his AFO, the slickness of boat rails, and the wet steps. However, his determination to experience this led him to proceed.
• Breathtaking Encounter: Upon entering the water, Joey found the experience "amazing" and "breathtaking." He described the mantas "barrel rolling" close to them, creating a thrilling and unbelievable encounter. Joshua expressed gratitude for Joey's willingness to participate, calling him "game."

3. The Power of Support and Self-Advocacy

• Hope and Self-Advocacy: Joey shared that hearing a neurologist speak about hope a few months prior had been a turning point, making good days better and bad days seem good. He stressed the importance of self-advocacy in receiving the right treatment.
• Care Plan: His current care plan includes regular physician and neurologist appointments, blood work, nerve conduction studies, and physical and occupational therapy.
• Trusting His Body: Joey is learning to trust himself and his body more, discovering his physical abilities and experiencing "wow moments" about what's next.
• Michelle's Role: Michelle plays a crucial role in Joey's support system, motivating him to exercise, attend therapy, and get up each day. Joey describes her as not giving him "any slack," which is a form of motivation.
• Friendship as a Song: Joshua reflects on the idea that true friendship is knowing someone's song and singing it back when they forget. He sees this resilience in Joey, often reminded by others of the positive aspects of his journey.

4. Perspective and Gratitude

• Stargazing and Perspective: A moment of stargazing in Hawaii offered a profound shift in perspective, with Joey noting he had never seen so many stars. This experience reinforced the idea of taking things "one day at a time" and enjoying each day.
• Gratitude for Support: The journey fostered overwhelming gratitude for the people who support them when hope feels out of reach, acknowledging the work and love required to overcome challenges.
• Family Support: Joey's family, including Michelle and his children, are a significant source of support. While he had to give up many activities, his family understands his slower pace and finds new ways to connect, like finding activities they can do together at a slower pace. He acknowledges their presence as a great help.
• Focusing on the Present: Joey's philosophy has shifted from dwelling on what could be to focusing on "what we are and what we have right now."

5. A Celebration of Freedom and Future Possibilities

• Swimming Together: A significant moment was Joey and Michelle swimming in the ocean together, a celebration of what the trip means for their future. Michelle described it as the "coolest thing I've ever seen in my life."
• Witnessing Joey's Agency: Joshua observed Joey taking charge, saying, "I got this actually, I actually I got this," which he found beautiful to witness, especially given Joey's history of service as a police officer and volunteer firefighter.
• Sense of Freedom: Seeing Joey swim freely in the ocean, "free of the confines of the earth," gave Michelle an "enormous sense of freedom for him."
• Renewed Meaning: Joey states that the journey has given him "new meaning on life" and that he no longer has the worries he had at the beginning. He is "ready to continue the journeys of life" and looks forward to what's next.

6. Conclusion: Bravery and the Human Spirit

• Stretching Normalcy: Joshua emphasizes that travel's fundamental importance is to stretch our sense of normalcy and baseline. For those experiencing conditions like Joey's, it can feel like a ticking clock, but it's crucial not to give up ground that still belongs to them.
• Joey as a Symbol of Bravery: Joshua views Joey as representing bravery, embodying a profound, meaningful, and courageous way of being and walking. He feels lucky to have "heard Joey's song" during their time together.
• Embracing Life's Journey: The journey concludes with a renewed sense of purpose and a commitment to continue living life to the fullest, experiencing as much as possible, and embracing both experience and love. Joey's story is a testament to the power of perseverance, the importance of support systems, and the enduring strength of the human spirit in the face of adversity.