After 3 years, a return to my ‘Rumination and Response’ column

Sharing my journey as a familial amyloid polyneuropathy caregiver

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by Ezekiel Lim |

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After a hiatus of three years, it is with a mix of emotions that I return to writing this column. Allow me to reintroduce myself: My name is Ezekiel Lim, and I continue writing to share once again the journey of caregiving for my mother-in-law, who has struggled with familial amyloid polyneuropathy (FAP) throughout the last decade I’ve known her.

As time progresses, the landscape of our lives continues to evolve, presenting us with new challenges, triumphs, and insights. Through this column, I hope to offer a beacon of understanding, empathy, and camaraderie to all those who walk this path alongside their loved ones.

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Where I’ve been

In April 2020, a platform-as-a-service company recruited me for a role in the company’s marketing department. I received a job offer from the company the following month and started working there at the end of May 2020. As I learned about a new industry, I placed my writing on hold.

The last three and a half years have been full of growth. I began by learning more about the pharmaceutical industry, how to market within the industry, and many of the regulatory requirements of pharmaceutical marketing. After my first year, the company promoted me to marketing manager.

I also became a father for the first time in February 2022. My mother-in-law’s health hasn’t changed much in the last three years, but having grandchildren has seemingly given her a new lease on life.

Being a close relative to someone with FAP

When I first embarked on my journey of writing about what I’ve experienced as a caregiver to my mother-in-law, my passion centered on shedding light on the unique experiences faced by a close relative with FAP, a rare and often misunderstood condition.

Now I want to turn the spotlight to the caregiving team’s experience. Being part of a care team for an ailing relative is not a solitary journey, but rather a tapestry woven together with countless stories of compassion, frustration, hope, and resilience. Those who share in caregiving duties find solace in shared struggles, and through our collective strength, we foster a community that uplifts and empowers.

My journey as a close relative to someone suffering from FAP has been marked by both the expected and the unforeseen. Moments of exhaustion, uncertainty, and heartache have given way to unexpected wellsprings of hope, laughter, and a deeper connection to a human being’s fighting spirit. I’ve seen the incredible capacity of individuals to adapt and redefine what it means to live.

Addressing the challenges FAP caregivers face

In this space, I’ll continue to explore the intricacies, emotional nuances, practical challenges, and profound moments of growth that arise from caring for a relative with familial amyloid polyneuropathy, or any life-threatening ailment. I will bring you stories of how my family navigates daily life so that we may all gain a better understanding, support one another, and ultimately overcome the challenges FAP presents.

I’ll delve into daily life and how the latest developments in FAP research and treatment inform my family’s decisions. I hope to provide a reliable source of hope and information for those who seek it. And, as always, I invite you, the reader, to join in this conversation. Feel free to share your stories, questions, and insights in the comments section below each column.

As we rekindle this dialogue, let’s remember that every voice, every experience, and every step forward is a testament to the power of unity and an opportunity to share acquired knowledge with someone in the same season of life.

Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.


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