Just before Christmas of 2023, I told my mother that I had a life-threatening disease with no known cure. I provided all the sordid details: how I did quite a bit of internet searching. Yeah, sure, I self-diagnosed myself with everything from work-related fatigue to amyotrophic lateral sclerosis, long-COVID, and finally, progressive supranuclear palsy. I researched close to twenty different diseases. But at the end of the day, the only thing that fits (at least for now) is Light Chain Deposition Disease (LCDD) or AL Amyloidosis. I took her through all the appointments, all the tests, and all my frustrations. I skipped the part about survival: from 1 month to 10 years. I mean, hell if I know.
Part of my song and dance speech highlighted catching LCDD early. First is timely treatment. Early detection allows for prompt initiation of therapy, which can help slow down or manage the progression of the disease—secondly, preservation of organ function. Early diagnosis and intervention can help preserve the function of these vital organs and prevent irreversible damage—and, last, improved quality of life. By managing the disease early, individuals with LCDD may experience a better quality of life and fewer symptoms.
‘Quality of life‘ is a misnomer, at least to me. Theoretically, I am in the early stage of LCDD. Ok, let me correct something: LCDD does not have distinct stages like other diseases, such as cancer. However, my mother doesn’t know any of this. What’s essential for my mother is quality of life. The progression and severity of LCDD are typically described based on the extent and location of light chain deposits in various organs and the associated organ damage.
Reactions to an LCDD diagnosis can vary widely from person to person. Telling a family member that one received a Light Chain Deposition Disease (LCDD) diagnosis generally elicits a range of emotions and reactions. Shock and disbelief are standard. Many people may experience fear and anxiety about the implications of the disease. While some individuals may feel overwhelmed and anxious, others may adopt a proactive approach, actively engaging in their treatment plans and making necessary lifestyle changes to optimize their health. My mother was stoic. “Mom, I have a plasma disorder. It’s called Light Chain Deposition Disease. Unfortunately, it’s not curable.”
A profound sense of stillness swallowed my mother. I thought the words hung with a profound sense of gravity. Yet, she remained stoic and composed. If there was any turmoil, her face betrayed no sign. As I explained the nature of the disease, my mother absorbed it as if she were an observer. She nodded in acknowledgment and asked only a few thoughtful questions about treatment. At that moment, it became evident that my mother possessed a remarkable inner strength, the same resilience I inherited, and the same inner strength currently serving as my steadfast companion.
Whether credit is due to my military or Buddhist meditation training, I did not succumb to despair or hopelessness. I chose a different path. With unyielding determination and a God-given spirit, I embraced the reality of the condition. My resilience is my steadfast companion, a guiding light in uncertainty. LCDD may be incurable, but I am resolute in seizing every moment I have left.
My Buddhist training encourages cultivating inner strength, resilience, and a positive attitude in the face of adversity. Maintaining a calm and peaceful mind is essential to better cope with the challenges of the disease. Additionally, meditation helps alleviate suffering and find peace amidst physical and emotional pain. However, I also recognize that what works for me may only work for some. Still, these practices might help individuals connect with their inner selves and find solace.
Just as I did with my mother, and just as I practice now, I emphasize the impermanence of life and the inevitability of death as fundamental aspects of human existence. We conversed about my progress in the months following. If I can summarize our conversations, it would be that I approach my death with a deep acceptance of a more extensive natural process. And (as many of my readers know) I have been spiritually preparing for death for several years. Thus, in my final moments, I hope to express gratitude for the opportunity to serve humanity and strive to maintain a compassionate and loving state of mind.
Canadian author Stephen Jenkinson (Die Wise), known for his work with death and dying, provided a roadmap. Face death directly and honestly, without denial or evasion. I want to approach my death with a deep acceptance of its inevitability, acknowledging it as an integral part of the human experience. I want to recognize the importance of expressing grief and loss. I want to engage God and Christ in practices that can help me cope with my mortality, including contemplation and reflection. Last, I want to reconcile myself and others with unresolved life issues. I will always seek forgiveness and offer forgiveness to find peace and closure.
As I told my mother, “While the specifics of each person’s response to their death are unique, I would approach my death with authenticity, emotional depth, and a commitment to facing the reality of mortality with grace and wisdom.“