Turning Pain, Into Purpose: The Documentary

Summary

Avery, a former college athlete, recounts her journey after being diagnosed with neuromyelitis optica spectrum disorder (NMOSD), a rare disease causing blindness and paralysis. Initially in denial, she clung to the hope of running again, embodying the 'runner's spirit' to overcome obstacles. After a month in the hospital and undergoing plasmapheresis, Avery took her first steps, determined to walk and eventually run. She turned to creating hope bracelets for fellow rare disease patients and shared her story online, finding a community and purpose. Avery's narrative is one of resilience, hope, and the transformation of pain into purpose.

Takeaways

• 🏃‍♀️ The individual's identity was deeply tied to their athletic abilities, particularly running, which was a significant part of their personality and self-concept.
• 🏥 A sudden and severe health crisis led to the diagnosis of a rare disease, neuromyelitis optica spectrum disorder (NMOSD), which brought about a profound shift in their life.
• 🚫 The diagnosis meant that running, a core aspect of their identity, was no longer possible, leading to a period of denial and a deep sense of loss.
• 🔍 Despite the challenges, the individual held onto hope and the spirit of a runner, which propelled them to push through mental and physical obstacles.
• 🏥 The healthcare journey was marked by extensive testing and uncertainty, with doctors initially unsure of the cause of the symptoms.
• 🏥 A pivotal moment came when a student doctor recognized the symptoms and sought advice from a specialist, leading to the correct diagnosis.
• 💉 The treatment involved a process called plasmapheresis, which helped filter out harmful antibodies and was crucial in the recovery process.
• 🌟 The individual's determination to walk and eventually run again was a testament to their resilience and the support they received from healthcare professionals.
• 🤝 The experience inspired them to give back by creating hope bracelets for other rare disease patients and sharing their story to raise awareness.
• 🌐 The individual's online presence and advocacy work aim to connect with and support others facing similar challenges, turning personal pain into a purpose.

Q & A

What was the initial impact of the diagnosis on Avery's identity and self-perception?

Avery's identity was deeply tied to being a runner, and the diagnosis threatened to take that away, leading to feelings of denial and a sense of losing a significant part of herself.

How did Avery cope with the denial and the reality of her diagnosis?

Avery held onto the hope of running again, which helped her to keep going. She also drew strength from the 'runner spirit,' pushing past mental and physical obstacles.

What was the turning point for Avery during her vacation in July 2017?

The turning point was when Avery started experiencing severe pain in the back of her eye, which progressively worsened, affecting her vision and eventually leading to a hospital visit.

What was the initial response from the ER staff when Avery first presented with symptoms?

The ER staff initially thought it might be a mental health issue or attributed it to emotional stress, as they did not see any visible symptoms.

How did Avery's symptoms progress while in the ER, and what was the immediate concern?

Avery's symptoms rapidly progressed to include blindness and paralysis. The immediate concern was identifying the cause of these severe symptoms.

What was the diagnosis that Avery received after extensive testing?

Avery was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), a rare autoimmune disease that can cause blindness and paralysis.

How did Avery's life change after being told that running might not be possible for her?

Avery had to reevaluate her identity and future without running, leading to a period of mourning and a search for a new sense of self and purpose.

What treatment did Avery undergo to help manage her NMOSD?

Avery underwent a process called plasmapheresis, where her blood was filtered to remove harmful antibodies causing her symptoms.

How did Avery find a new purpose after her diagnosis?

Avery began making 'hope bracelets' to send to other rare disease patients worldwide and started sharing her story online to connect with and support others in similar situations.

What was the significance of Avery's decision to try running again despite her diagnosis?

Running again symbolized Avery regaining control and demonstrating that she could still engage in activities she loved, even if at a different level or in a modified way.

What is Avery's vision for the future in terms of supporting others with rare diseases?

Avery envisions expanding support for rare disease patients nationally and globally, helping them overcome loneliness and continue pursuing their passions despite their conditions.