Nick has been a significant and beneficial figure in the lives of so many people, and is one of the finest humans I’ve had the privilege of knowing. His path through life has been a amazing one (in my opinion), and his journey w/ cancer is stunning: In his words, “…diagnosed in November, 2002 w/ Acute Lymphoblastic Leukemia; 68% systemic “involvement” – meaning 68% of my blood and marrow was cancerous. Given my age and advanced presentation, I was given a 20% chance of 5 yr. survival. Achieved remission in Jan. of 2003, completed the protocol and therapy in July of 2003. Returned to work by Oct. of 2003. Relapsed with brain cancer and CNS leukemia in April of 2007. Very, very serious. Given only 5% chance of survival for one year. Achieved remission in June of 2007, and began screening for candidacy at Seattle Cancer Care Alliance for a bone-marrow transplant. “Inducted” for transplant in mid July at SCCA, given Cytoxin and total-body irradiation to prepare for transplant in August of 2007. Survived brain cancer and the toxic transplant regimen; received unrelated, opposite-sex ‘matched’ bone marrow on 8/2/2007. Given 25% chance to survive 2 years. Suffered acute GvHD (Graft-versus Host Disease in October of 2007. Diagnosed with terminal disease in December of 2007. Expected to die in 1 week to 1 month. I did not die, and continued with treatment to control severe gut gvhd and wasting syndrome that dwindled my body down to 92 pounds. I have a very unique survival trajectory, given my conditions and their severity. I was once known as the only survivor of my particular condition(s). Now, I have severe chronic GvHD of the skin and fascia, with immunological deficiencies. Still kicking, and improving with the introduction of a chemotherapy agent I started last January”. These are mostly general descriptions, but the details were jaw dropping; I won’t describe the treatments because they were extreme.
Despite the disease and the treatment he remains a man of tremendous curiosity, creativity, and energy. As long as I’ve known him, he’s shared his energy liberally and graciously with both strangers and friends alike. From the moment we met it seemed to me that Nick talked a lot. Many people in this world run their mouth, but it’s not something I tend to find impressive; talk much, say little. In Nick’s case, he has entertained and illuminated the way for many people with his words. However, his loquaciousness is matched by an equal measure of integrity – a rare combination, and I think the key component to giving his words meaning. A large community of friends has developed and evolved from his focalizing efforts. Nick has also been pivotal in bridging the generations of young seekers and our elders, bringing us together to continue our exploration into the experience of life. He is a man who walks his talk, and that is only one of the things that raises him far above the average. Here’s something I know to be true: Nick, you are loved by many, many people. I love you, brother. And I hope you enjoy the surprise of seeing this site. Forward ever.
DS: “Exogenista,” I don’t see a definition for it when I google it. It appears to have use in languages other than english (spanish and portugese) and I’m under the impression that you coined it’s for use in english… I think you have the right to define it. What does it mean and what did it evolve from?
NF: “Exogenista” and “Endogenista” are two words I created rather metapoetically. I use these terms pulled out some free-form writings I had packed away for some years. The words are based roughly upon the terms exogenous and endogenous, with the “-ista” added for the derived meaning.”
“ENDO” and EXO” are self-explanatory prefixes, as in “…thermic”.
Suffix:-ista is added to words to form nouns denoting one who is passionate or follows a principle; an adept or expert- ie. fashionista, Marxista, Sandanista, Barista, etceterista..
Hence: Exogenista is an adept of the outer worlds; the physical, palpable, the tangible, etc. Endogenista is an adept of the inner worlds; the spirit, consciousness, creativity, etc.
I like to say I am a “Lover” of the Endo and the Exo…They are more mantra than title.. aspiration, praxis…
(As a mountainbiker I took so many endos, I was very adept at those too.) *wink*
I am also called “Crythunder”- a name I received once on a long solo voyage/ journey. I continue to use that as a nom de plume and playa name for the internet. The name seems so familiar and fitting for reasons I do not actually know.
DS: Talk about community in your life. You were a bit of a loner out east, right? You weren’t friendless by any means, but since you came west you found (or made) your community/tribe/chosen family. What is ‘chosen family’ and what has it done for you? How did you create it and how has it shaped you?
NF: Much of the answer to these questions is succinctly summed by a quote from the book “Jonathon Livingston Seagull” by Richard Bach: “The bond that links your true family is not one of blood, but of respect and joy in each other’s life. Rarely do members of one family grow up under the same roof.”
Back in my hometown in the Adirondack Park in Northern NY, I had an incredibly large family composed of both biological relatives and those acquired when I was fostered by the folks who raised me from the age of 4 until I graduated high school.
At the time, I was estranged from most of my biological family; siblings, mother, nieces and nephews. My foster family was huge, and most of them still live within 20 miles of each other, as they have for many generations. As a young man, I had a tendency to keep to myself, which earned me the title of “black sheep”. Everyone around me knew that I would not stay in NY for long. I also knew that I had a wandering spirit. I maintained a core group of friends following high school graduation, with whom I spent the majority of my free time between 1988 and 1992. Most of them went off to college, returned, married and settled down. I, however, moved further and further north, into the countryside, following employment opportunities. In Lake Placid, NY, I acquired a great job managing a fancy hotel’s food and beverage program. I was pleased for a time and stayed there for five years.
Ultimately, the job’s demands and the quirkiness of the small community began to wear on me. I was not happy, although I had achieved more than anyone had expected by the age of 25. I decided to move to Seattle with my girlfriend at the time, who had accepted a teaching opportunity at the University. Seattle seemed exotic and exciting for a small town boy like me. Because I did not have many close friends and my family rarely interacted with me, I simply quit my job, bought a new car and drove west.
My journey was life-changing and very cathartic. I had never been west of Buffalo, NY before and the scenery of our vast country thrilled me. I recognized a subtle shift in the personality and culture of Americans as I drew farther and farther from home. I marveled at our National Parks and the changing geography. I mountain-biked in Moab, skiied in Park City, climbed many mountains and camped along roaring rivers in Wyoming and Montana. As Seattle loomed, I knew I was going home.
I arrived and settled in Seattle in the spring of ’97 after a 3 mos. tour of the country. For the first year, I mainly worked, meeting only a few people with whom I am still friends. However, it was not until 1999 when I met my current partner, —————-, that I discovered my true and chosen family. For 2 years prior to our meeting, I had immersed myself in Botany studies, remaining single as I healed my old emotional wounds, “finding my walk” on a path that I had been seeking for many years. The NW presented me with a diverse geography, worthy of exploration. My botany studies lead me to mycology. Every weekend, I hunted for edible wild mushrooms in the thick forests and mountains that surround Seattle. I soon discovered varieties rare and delicious, in the parks and gardens just minutes from my home. Discovering the permutations of foraging in this way became a type of ritual that fostered catharsis and personal growth. I explored the world alone, meditating upon my shadows and demons; discovering beauty in and around me that I had never noticed before. My world changed as my view changed. I was maturing, evolving- and my world was following suit.
After 2 years of this intense solo work, I decided to re-enter the human race. No sooner had I decided to share my passion for plants and mushrooms with others, than “———-” appeared in my life. She saw in me what I recently discovered in myself, and I saw in her a shining potential for new growth and further evolution. We fell in love. Our joining created a dynamic dyad that brought many new places and faces into both of our lives. Together, we found many people who were of like mind and intention. Many of our new friends were “black sheep” themselves; misunderstood, challenged yet full of wisdom, beauty and compassion. “We’ll be friends until we die.” wasn’t just a corny turn of phrase- it was a truth that we had all wished for as children, and could not now deny. I had long been a lone wolf, worried that I would not find a true family in my lifetime. With my partner, I cultivated relationships with many amazing individuals, who are also now good friends themselves. Our group of friends, our tribe, suffered many of the same dramas that blood relatives endure. We also shared in each other’s triumphs and challenges, supporting each other like brothers and sisters.
Through my new-found family, I have learned how to forgive my biological and foster families, accepting their love knowing that we all do the best we can. I am now closer to my original family than ever before. They stepped up along with my ‘West-coast tribe’ to offer me their help and support when I got leukemia ten years ago. All of my friends and family showed to me that the world is full of love and compassion and it was I who did not see clearly in the innocence and ignorance of my youth. In my darkest moments my extended family was truly illuminated. They had been there all along, waiting for me to recognize them for what they had always been. I needed to leave and discover myself in others in order to return home with a renewed perspective.
Community is an essential foundation for healing and redemption. I know now that no one truly walks alone. I understand that “family is what family does” and everyone can only do their best. Relationships are like the tides; they come and they go. Upon the sands of this beach are foot prints of the black sheep that wandered away from the flock that once protected and nurtured them. The new tide rises again and again, washing away the imprint of guilty abandonment to reveal yet another chance to make footprints that circle back into the waiting arms of love and acceptance.
I am grateful to have many communities to love and to share life with. Together, these facets comprise a single, shining gem that I can proudly call my family.
DS: The tribe has made a habit of gathering, hasn’t it? Burning Man (since the 90’s) is an example of one of the public events that people celebrated at together, but there were also private events. Without giving away the real details of some of the private gathering spots, can you talk about how these gathering evolved, what they were then and now? What did they do for the people who defined them by attending them? And why were the invites to them so coveted that people of some celebrity heard of them and requested to be part of them?
NF: Well, that is quite a question, with a lot of dimensions. Our series of gatherings have deeply impacted and shaped my own social and spiritual perspective and enriched my life with many wonderful friends.
DS: Can you talk about how these gatherings evolved, what they were then and now?
NF: My partner and I have always been quite social, and upon meeting, had brought each of our own friends together for camping excursions, dancing out on the town and getaways to events in the Puget Sound and beyond. Since our meeting, we had developed an intimate ‘family’ of intelligent, kind people. Our joy was to forage in the Cascade Mountains for wild mushrooms, a hobby that we shared with almost everyone we knew. After a couple of years, we began organizing a few annual, intentional events to create sacred space and deepen our connections within the group. One gathering in particular was founded by a vision, ignited by a discovery and fueled by an exciting, growing group of participants.
The vision, formed by my partner and I, was of an invite-only gathering for like-minded friends, in a safe, sane environment where ideas and experiences could be shared in the interest of bettering our individual lives and strengthening the ties that bind us. There were a few rules- Bring your ‘best’ self, attendees were to have no more than one degree of separation, what we shared stayed among us, there were no spectators and pictures were only allowed with the subject’s permission.
The discovery was a region sporting fruitful forests full of edible wild mushrooms in a beautiful, rural area along the Pacific Coast. Our vacation to the area was so incredibly beautiful and rewarding that we decided to invite 15 or so of our best friends to join us the following year to share in our discoveries. We rented a perfect location and sent the first round of invites out in the summer of 2000.
The “fuel” held perhaps the most surprising rewards for our effort. The event was propelled by and skyrocketed because of the attendees. We learned that successful gatherings of this type could not be ‘directed’, rather it seemed wiser to simply facilitate; providing a setting that is conducive to manifest our own intention while allowing the “set” to freely form around the elemental chemistry of the people in attendance. We liked to say that it “made it’s own sauce.” We offered the chance for every attendee to develop a presentation for the group, based on something that they were passionate about or simply enjoyed. It didn’t need to be scholarly or fancy, just genuine. We wanted to put our friends on a stage and let them shine for a while. We knew all of them well enough to know that they each had a special gift, unique and wonderful that they could easily share with an open-minded and fantastically supportive group. The evolution was evident by the growth in attendance, from 15 to 80, precipitating a move to larger facilities, and by the presentations which had become a primary focus, disseminating information in a scholarly yet accessible forum with a question-answer format, panels of speakers and the open opportunity to have personal conversations with these various professors, authors and philosophers from a variety of disciplines. We discovered that our influential teachers were also our peers as we shared common interests and values.
DS: What did they do for the people who defined them by attending them?
NF: Over the course of 10 years or so, the attendance exploded, bringing many new faces, creating new and lasting friendships that somehow, magically helped to open the hearts and minds of nearly every participant. Many smaller ‘spin-off ‘events were created over the decade, which we had strongly supported, that were organized and attended by people who had met through our special annual gathering. I was told countless times by many attendees that this particular event had changed their lives in some way for the better and was now an important part of their social life. We all began to believe in something we may have forgotten as children; that we could truly expect to maintain life-long, productive relationships with our friends. We celebrated our individual uniqueness and supported the notion that everyone is special, can be heard and be well understood by others. Those who didn’t understand or sense the group’s vision simply didn’t attend future events. For those who remained, our growing group seemed as if it had been destined to form. Together, we created a dynamic that was spontaneous and exponential in its potential and energy. It was exactly what we expected; better than we could ever have imagined. Over the years, I watched people evolving, maturing and growing. Many, including myself, improved their personal outlook on life in general. I heard stories about renewed ties with estranged family members, with peers and in job environments. The presentations became more elaborate, scholarly and surprising. I saw friends meet, fall in love, marry and have children through this gathering. Without doubt, the event was beyond remarkable; it was changing lives and providing a foundation for deep and lasting friendships.
DS: Why were the invites to them so coveted that people of some celebrity heard of them and requested to be part of them?
NF: I remember sitting with such people, watching the group dancing, chatting, laughing and sharing. The attendance had risen to about 60 by this time, and the event was absolutely kinetic. One of the women, a respected elder, turned to me and said that she had seen many groups like this one form, evolve, dissolve and float away upon the river of time. She said that it was perfectly natural that pioneers, in laying the trail, encountered pitfalls and difficulties in their discoveries and explorations. Yet, she now felt a deep sense of satisfaction seeing this very group so effortlessly displaying many of the aspirations and interactions that other groups had so earnestly attempted to attain at their gatherings. She sensed a palpable evolution in awareness and intention that she had never witnessed before. She, and many other older attendees agreed that this event, propelled by our unabashed, youthful energy, was more inspiring than any of them had expected. The event now had attendees from 18 to 80 years of age, from across the country, mixing and working together. They were all grateful to be a part of this event, and hoped to return as many times as possible. The elders said that they saw a hint of the future in us, and felt that the community was on a good path and would continue to evolve in their absence. I was deeply moved by these conversations. I had personally envisioned a day when we would invite such remarkable people to share in our experiences, but when the vision crystalized into a blossoming reality, the ripple-effect spread the word throughout our community. Many of the people whom I had only hoped to invite began asking for a chance to attend! With new faces emerging and old friends in place, my partner and I simply smiled and watched the seeds we had planted flowering. Although our motives were originally somewhat selfish in that we wanted to surround ourselves with amazing people, the final product was now out of our hands and belonged to a growing cosmic community that helped us both to better understand the enormous value of true community united in love and respect.
DS: Share the favorite poem you’ve written/created in the last year.
NF: I saw you “Liked” the poem I posted on my status. Let’s make that the poem that I may deem nearest to my state of mind and being post-transplant. Favorite from this year… Written today at noon, from rote, riffing on scraps of gnomic poems I simply pieced together once I saw that they all were saying the same thing. Funny how all my poems say the same thing. Funny how my favorite is always the one I just created. Likened to my psycho-spiritual growth, I find that whittling the word away allows the light of truth to shine through. Simplicity may seem complex, but one is but the other, as X=X.
the purest vapors are first to rise
descend and ascend, my beloved friends
Let’s leave behind that which we cannot find
the coarse debris from the fine design
trust the way that all things go
rise above that which we cannot know
To seek is not to find
the struggle lies within the mind
release the burden that weighs you down
for you cannot lose what cannot be found
To find is finding alone
Right Here, where we are
Right Now, where flesh meets bone
retire from the futile hunt
and own that you are not alone
You are free to simply Be
for being is all you are
a constellation, a rising star
a gentle spirit distilled from air
pure and perfect, fine and rare
We are together bound to rise
Seek not, gentle spirits:
What you seek is before your eyes.
Favorite from this year… Written today at noon, from rote, riffing on scraps of gnomic poems I simply pieced together once I saw that they all were saying the same thing. Funny how all my poems say the same thing. Funny how my favorite is always the one I just created. Likened to my psycho-spiritual growth, I find that whittling the word away allows the light of truth to shine through. Simplicity may seem complex, but one is but the other, as X=X.
DS: How are you different now than pre-cancer?
NF: The changes within me were subtle. I believed I would gain something; insight, knowledge, wisdom, strength… you know, the things we read about. What I have discerned after 12 years’ digestion and inflection is that I have released, surrendered the armor and stumbling blocks I had innocently built around my heart, before my eyes and in my mind. I “see” more clearly. I recognize now the world around me grows within me and is, in a sense, my own creation. Rather than acquisition, cancer cured me by clearing out, purging the veil, the smoky mirror, the ideas that bound me. I see now that the greatest warrior is the one that surrenders the battle, and bears no grudge against those who continue to fight. A poem written from my bed in hospital:
An exit obvious, to some
To most, an unwinnable fight.
I surrendered because I was no longer sure
And every wall became a door!
There are walls within us and walls around us. The ones within are valuable doors. Even left unopened, we know what lays behind. What is the use, then? Because we are afraid? Because Courage is Kindness here. Be kind to myself, I say. Once opened, the walls, the doors inside disappear. There never was a wall, and there never was a door, but to discover this, I had to first see the wall, open the door and be witness to the illusion that had haunted me. Indeed, it is the journey. Letting go, releasing and setting myself free. I am grateful for my illness. I may have remained enslaved to illusions all my life had I not been forced to look inside for guidance. Illusions, like a mirage do exist. That is the promise and the threat. They may persist forever. They may blow away upon a single breath.
DS: What’s inspiring to you these days?
NF: My home on =========. Slowing down. The herons, eagles and hawks and deer grazing on the pear trees outside my window. My woman, as always, my single-most challenging muse. My old writings; I look again and see them anew. Did I mean that? Well, now I do!
DS: How do you handle the post-cancer challenges, GvHD and life itself?
NF: If I stand facing the light, my shadows are behind me. If I pay attention to what pleases me, brings me peace, the “difficulties” disappear. I stretch, breathe deeply and sing every day. If I am “bluesy”, I clean the house, wash some dishes, take a walk. I take my medications and follow doctor’s advice. I release my tension as soon as It is apparent, giving the dark seed no time to grow, flower and fruit. Simply stated, I try. I move forward and I realize that only hind-sight is 20/20.
P.S. This is one of the signatures Nick used in emails and shouldn’t be neglected:
“To be surprised, to wonder, is to begin to understand.” – José Ortega y Gaset