Navigating Life’s Path With Multiple Myeloma

A quote shared during our bi-weekly Tuesday multiple myeloma support group, where five or more gather in the virtual Zoom room, reads: "I may not have gone where I intended to go, but I think I have ended up where I intended to be." It is by the writer Douglas Adams.

Our facilitator discovered it printed in a tiny italic font at the bottom of a laminated menu at a cafe near Mount Sinai hospital. She was inspired to present this quote as a prompt for our group. Adams is best known for the mock science-fiction series known collectively as “The Hitchhiker's Guide to the Galaxy.” Here is my essay, generated from this writing prompt:

It was my high school drafting class that changed everything for me. I'd been dreaming of studying the ocean. I had seven aquariums at home with both fresh and saltwater creatures. I had volunteered at the gift shop of the New England Aquarium when it first opened its doors. Though I was not exactly handling marine specimens, I could smell the salt water from where I stood, and that was enough.

Then the guidance counselor placed me in advanced courses, which included drafting. I remember rolling my eyes — what did technical drawing have to do with Jacques Cousteau? But watching my drafting teacher’s hands create worlds from straight lines, hearing him talk about space and structure with such reverence, seeing my own A-grade sketches unfold — suddenly architecture seemed like its own kind of ocean, vast and waiting for exploration.

After 12 years as a traditional architect who designed residences, offices and institutions with bold spaces, glass facades and sharp angles, my life's path veered unexpectedly. In 1990, within the span of three months, I lost both my father to heart failure and my closest friend, Mitch, to AIDS. I felt something shift inside me. Six months later, I found myself studying the ancient Chinese art of Feng Shui and incorporating blessing rituals from various spiritual traditions into my designs —creating spaces that healed rather than merely housed. That this work has allowed me to travel the globe several times — wandering through the narrow, cobblestoned streets of Nepal at dawn, feeling the grandeur of cathedrals in Europe, watching the elephants in Thailand — and living in Amsterdam for some years, where my apartment overlooked a canal in the same neighborhood of the Anne Frank house, I have clearly been blessed.

Where does time fly? After years of adventure, then came the diagnosis of multiple myeloma, which transformed me into an armchair traveler, my adventures now confined to my IPhone Facebook posts. But I realized that all my life experiences — the languages I've fumbled through, the strange foods I've tasted, the countless times I've been lost and found my way — have tremendously helped me develop a deeper compassion and understanding of others' journeys, especially those navigating illness and limitation. And in the last eight years, I have become much more observant about handicapped features in apartments, offices and buildings — the width of doorways that must accommodate wheelchairs, the height of light switches that should be reachable from a seated position, the gentle slope of ramps that replace imposing staircases.

Another aspect that I learned about myself through this cancer journey is about life’s priorities. Being selective about doing my "to do" list has become a delicate art. I can't do everything when energy is as precious as water in a desert. Recently I had to choose between doing a presentation at the townhouse of the famed architect Paul Rudolph whose midtown home now serves to help promote his legacy. A former colleague who wanted me to share my experience and stories of our working together to his office team. My other choice was attending a summer garden party with a fellow myeloma friend who understood the weight of good days. After hours of deliberation, I chose the townhouse presentation because it was an opportunity to share and teach my experience of working for Rudolph.

Following the presentation, my friend sent me a link to join her group called the Bloodhounds for the upcoming multiple myeloma walk in October. I look forward to joining the crusade to find a cure along the Hudson River.

So, the quote by Douglas Adams — "I may not have gone where I intended to go, but I think I have ended up where I needed to be"— feels like a lighthouse beam cutting through the fog of my meandering path from an oceanography student to architect to Feng Shui practitioner to someone navigating life with multiple myeloma. Each unexpected turn — the deaths in my life, the teachers who inspire, the illness that kept me bedridden for months — revealed itself as necessary, each seemingly pointless detour through grief and confusion is somehow essential to the wiser and grateful person I've become.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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