Too Much Fun Dying to Stop Now

This book is dedicated to the peace that flowers in understanding.

What a great team of help has come about to aid in the creation of Too Much Fun Dying to Stop Now. From the “nameless one” who helped me elucidate some of this long ago, to the practical boots on the ground for the last few months, this book would not be here without the inclusion of all involved. My niece, Ava, whose guiding force helped this challenged brain to make it through the initial stages in the book’s creation, Laurie and the boys who have supported me all the way through, while living with a guy staying up too late every night to write, and so many others in many ways, have contributed... Thanks so much to all...

Editing: Virginia Osborne, Michael Marchal

All Digital Artwork and Layout: Suzanne Nicksic

Data Collection/Consultation: Kate Bercaw Bowers

Publishing: Joseph Neyer Creations, LLC.

Original Printing: CJK Print Possibilities

To the many who donated to help fund this project, thank you all!

It truly required us all together to take this from an idea to an actuality.

Loaded question, if ever there is one…

Let’s start by saying, for this story, I am the dying guy, a guy who has gone through many experiences, some joyful and some sorrowful, like almost all people do. I was diagnosed with Glioblastoma Multiforme IV in November of 2012, the deadliest, most aggressive form of brain cancer there is. Life can be like that, in its universal unfolding. All form goes through change, decay and death. None of us is exempt from the forces of interaction. Life seems to be impersonal and consistent this way. Here I am sharing a story of what has shaped my life and what continues to shape it today, allowing for a book title as audacious as Too Much Fun Dying to Stop Now to feel normal and natural to me.

The first day of being on a college campus in the fall of 1984, a goal quickly manifested. I had been raised in the Catholic tradition and educated in private, Catholic schools with the uniforms and all the rest of the repetitive practices. In my mind, I had been finished with school for years to the point that I suggested “Another Brick in the Wall” (We don’t need no education, we don’t need no thought control) by Pink Floyd as an 8th grade graduation song. The nuns did not take too kindly to my suggestion.

I was never cut out for uniformity or conformity despite both being important parts of the structures in which I was raised. There is nothing wrong with uniformity for many, but for me it was like a wool coat in August. I was ready to be finished with all of it, to shed that coat and feel the fresh breeze I knew was around me all those years. I knew this attitude was not going to sit well with my parents who wanted the best for me and felt college was of absolute importance. Rather than refuse to go, I took the easy way out and enrolled; I just checked out of going to classes. It was like trying to break up with a girlfriend you know is not the “one” and you never actually talk about it until it just erupts and is over. Yeah, a lot like that...

Since I was not going to classes or taking tests, the professors were obligated to help me in my pursuit to be finished with “formal” education. D’s and F’s sealed the deal. I came home after my second straight semester of failing grades and went out partying with friends that first night. When I got in around 3 in the morning, Dad was not too pleased and let me know his feelings about me coming in so late. Bless his heart, I was not an easy child. Anyway, the house was alarmed and I was feeling like a caged cougar. I knew the second story windows were not alarmed, so I wrote Mom and Dad a quick note saying I had to go my own way, quietly opened the window, stepped onto the roof, and jumped down into the bushes below. I had nothing but a little over-the-shoulder bag with a few t-shirts and shorts to begin this journey. I spent a couple months couch surfing in Clifton with friends, dealing some pot and avoiding talking to my family who were growing increasingly concerned.

In Clifton, I had my first psychedelic experience after ingesting a hit of LSD. It radically changed the way I viewed the world and myself. A psychedelic experience was so fundamentally different from any other experience I had ever had, but suffice it to say that my world was never the same after this experience. For one interesting August day and evening in 1985 in Clifton, Ohio, the “me” I thought I was lost its past and future. Later, I came to understand that this “me” that lives in imaginary time of past and future is the only “me” that holds onto and feeds fear with expectation, or looks back with remorse or misunderstood guilt. I felt the incredible freedom of this realization in the LSD experience itself, but the deepening of the understanding took place over time. The drug opened the door and then became unnecessary.

The experience is not repeatable anyway, no matter how many times you try. I tried and tried to recapture the initial freedom of that first experience, until I realized it was not the drug that was freeing but the mind freed by it where the change had taken place. Taking it again was now only for entertainment and I found it losing its value for that as well. I wanted more of the freedom I felt in that initial experience, but the drug would never provide that again.

This initial experience was cathartic enough to set the basic understanding that I could never be who I thought I was or who I thought I would be. These were all illusions of thought, the misunderstanding of wandering identifications locked in “time,” connected to the “me” I thought I was. Being attentive or present to our everyday is what takes understanding from theory to actualization. We have to see ourselves using time in this manner to understand its effects in our life. We are present to the actuality of life in each and every moment, a moment unbroken by the wanderings of thought and time.

This is freedom from fear, and this freedom can be discovered by anyone who looks with an intention to understand this insight into the movement of fear. The mind is deeply conditioned to think very fast so this understanding is not so simple. An honest intention to understand and the openness to look to what arises is a means to a genuine understanding of what is continually unfolding in one’s life.

It is important to be able to laugh at ourselves as we see these things arise—as we see how we live in imaginary time much of our lives—with all the worry and fear that comes along with this point of view. If we judge ourselves for what arises we only deepen the pattern. The point of looking is not to fix anything or change anything. That desire already has a judge of the past and a dreamer of the future in place. Both of these perspectives are limited to validating their own belief, literally Stuck in Time. Neither will shed understanding into the actual state of our being. What does help to shed understanding into our lives? Openness, listening, acceptance all seem to work as a bridge toward understanding unfolding into our life in each moment, understanding that is related to the actual context, not the imagined content we have come to think is “real.”

The intention and the looking is to understand ourselves—that is all—just looking to understand what happens in the manner of our thinking that traps us in fear and imaginary time. Laughing at ourselves, not taking ourselves too seriously, is a great aid at allowing this understanding to unfold as naturally as the pond lily does in the morning sunlight. No rush, no expectation, just looking to understand and watching as the day unfolds…

When Miami of Ohio opened back up in the fall of ‘85 for classes, I returned to Oxford and the partying crowd I knew and loved. I settled into the scene I was comfortable with, couch hopping again from dorm to dorm. I was well liked and usually had pot, so it was not too much of a burden for people to let me stay with them for a time.

My father has always been one incredibly determined man. He made contact with my best friend from high school, Chuck, and Chuck came up to visit me in Oxford. We went out drinking that night, much as we had done all through our junior and senior years. It was good to see Chuck again, just like old times. Toward the end of the evening he told me that my dad had asked him to come up and tell me he wanted me to have a meeting the next morning with a “therapist.” Just myself, Chuck and Mom and Dad, Chuck said. I was not pleased and felt used by all involved, but agreed to go to the meeting with Chuck driving me down to it.

As we arrived at the “therapist’s” building, I knew something was wrong. Scanning the numbers assigned to rooms as we walked by the directory, I did not see the name Chuck had told me for the therapist and my alert level went a notch higher. We got to a door, opened it, and my parents, brothers, sisters, my cousin Tom, and many of my in-laws, along with the presumed therapist were already inside. This was an intervention and I had walked right into it.

For the next hour there was more guilt thrust upon me than all the sermons I had not listened to for all those years of Catholic Mass. My family spoke of being afraid to let me near their kids, things like that. The weight, the guilt was overwhelming and I felt it directly, along with the undercurrent of rising rebellion. It turns out the “therapist” was the director of Straight, a local rehab facility, and they were ready to take me there, once the guilt had me in submission. Numb, I rode with my cousin Tom to the facility. We went straight to a meeting with the director and my parents. I was no longer worried about cussing in front of them, and they heard plenty in the next few minutes. I asked my father and the director to take the same sobriety tests I was taking, just to prove a point of how biased and leading these tests can be. The director had likely seen many diversionary moves like this one and was not easily swayed. I was led to a room down the hall to talk to two other “clients.” Being a smooth talker, I convinced one of the clients that I did not have an abuse problem. He confirmed my own thinking, that I was just experimenting and didn’t belong here. That was all the confirmation that I needed.

Adrenaline is an incredible chemical agent.

I went for the door and the two clients tried to block my path. With what seemed like no effort at all, I threw them out of the way and tore the door open, making my way into the grey hallways of uniformity. Clients hurled more guilt at me as I moved swiftly toward the exit doors. “Look what you are doing to your family,” I heard in the distance, but my eyes were fixed on the exits, and I was not wasting any time. I made it outside and scaled the twelve-foot wire fence in about four seconds, dropping to the other side and into potential freedom from this hell I felt in the middle of. My girlfriend, Marcie, lived about a mile away and I headed swiftly in that direction, avoiding areas I felt might be visible to those surely searching for me right now. I got to her house a few minutes before they did, gave her a quick rundown, and hid in the window well outside her house. Her dad was a bit of a partier himself and had no problem covering for me when my Dad did show up. Crouched low in the window well with the daddy longleg spiders, I could hear all the concern and suspicion in my Dad’s voice. He knew I was there but did not find me, and I was not concerned with his concern for me at that point.

I made it back to Oxford that night, disappearing from my family for what turned out to be months before reconnecting. In my time in Clifton, I also experimented with cocaine for a couple weeks and got into a little debt problem. That little debt problem found me a few months later in Oxford. I owed Eddie $700. I had a couple hundred the day he found me and a promise to get the rest to him next week.

Next week came and I did not have the balance of the money, so I made a choice to take off rather than get beat up, or worse. I got together a little shoulder-bag of clothes, sold the last bag of pot I had, made a few purchases and left with $13 and a full assortment of shirts and shorts to hike to the South and warmer weather.

I was alone now, completely alone.

Most of my time on the road hitchhiking was along the I-75 corridor from Florida to Ohio. I got to know the exits and places to camp for the night and, perhaps more importantly, places not to camp for the night. What ride came and where it took me was not always in my control, of course, and if a ride looked like a good one I was not worried so much about destination. General direction was fine, especially if the ride looked interesting. We are social beings, humans, and this was my social interaction, a chance to connect with other human beings in random and intermittent ways. Often the drivers who picked me up said I looked like their kid. I had managed to keep myself fairly clean and often would dance up and down the highway border, thrusting my thumb out in rhythm to my imaginary song and dance show. I am still easily amused and inspired to movement, particularly spontaneously arising movement. Anyway, I never knew who was going to be the next ride.

Many days there were no rides but a lot of walking and hunger. This was part of the allure and also part of the danger of doing what I was doing. It is likely I sought after both in this adventure, as the unknown and the danger were both powerful stimulants for me. The unknown still is, but my last ride ended my danger-seeking to a large degree.

On my way back from visiting my grade-school friend, John, in Washington DC, I was getting closer to Ohio and thought to myself, “Just a few more exits to go and I might make it back to Oxford in time to see people before the bars closed for the night.” I had a steady ride all the way across Indiana on I-70 that brought me to Richmond, Indiana, where the exit for Oxford came into sight; twenty-three miles to the exit, twenty from the exit to Oxford. I felt it would be no problem to make it. Just a few rides and I would be there with plenty of time before the bars closed. The first ride came very quickly and brought me to the center of Richmond and left me off where they needed to go a different way. I waited for a bit at that locale and then began to walk toward Oxford along the main road. I remember the cans strewn along the roadside and feeling happy to be close to “home” again, I was walking sprightly now, lost in thought of who might still be awake when I got to Oxford. I heard the car coming to a stop right after it rolled by me, which snapped me back into the moment a bit. It was a brown Camaro, that goldish brown color popular in the later 70’s, sort of like Jim Rockford’s car in the TV show The Rockford Files. The passenger door swung open and I hopped in immediately.

Bad move. Always look first. I was anxious to get to Oxford and had become inattentive in my impatience to get there. The door swung closed as he slammed his foot down on the accelerator and we took off. I quickly looked around and saw all the empty cans in the back seat, at least a case of beer and knew this was not going to be the best ride. I said, “Just let me out here man, I am good.” He threw a punch that caught me square in the left cheek and it felt really heavy. I saw then that he was holding a pistol in his right hand. Adrenaline is an incredible chemical agent. I grabbed his wrist, right below the gun, and twisted it hard as I slammed his head into the steering wheel with my other hand. He lost his grip, dropping the gun on the floor. He took off at high speed and started yelling at me to give him all my money. The gun, thankfully, slid under the seat as we took off. I was pretty sure a tree and I were about to have a meeting at any moment; this was my immediate concern. We were flying down this winding road in a neighborhood thick with trees. Time stopped—all my senses were on full alert. I was ready to spring from the car at any moment.

I had begun the adventure with $13 and I was not about to give him the last six bucks that I had. I told him I had no money to give him. He seemed a little shaken up from the last few moments and reacted by driving faster. He swung left and right, right and left as we wound deeper into the neighborhood. Abruptly, he slid into a driveway, maybe half a mile away from where he picked me up. I snatched my bag, checked to see the pistol had stayed out of sight, and flew out the door. The driver had found his anger in full by now and met me on the other side of the car, ready to tear me apart in his drunken rage. I am no fighter, but I did wrestle in high school and have very good reflexes. He swung at me, I dodged, secured his wrists and tackled him onto the porch. I knew I hit my face on the porch while tackling him, but pain was not felt at that point. I had another problem. A rifle was pressed to my temple from someone who had just come out of the house—the driver’s mother, as I came to find out.

Talking just as fast as I could, I said, “I’m just a college kid trying to get back to Oxford and your son picked me up and things got crazy. Ma’am, all I’m looking for is to get back to Oxford. If you can help me, that would be great.” Although she still held a gun to my temple, she relaxed the grip slightly and hollered, “Larry!” and a big dude came out of the house.

“Get a hold of Tyrone,” she said with the air of someone who’d been down this path before. “He picked up this hitchhiker and is being a pain in the ass.” With a well-practiced move, Larry switched places with me and placed his brother in a bear hug.

Once I was sure there would be no chase, I grabbed my bag and took off back to the highway, winding back the way I had been desperately trying to memorize on the harrowing drive in. I made it back to the main road, Rt. 27, and almost immediately, a truck stopped to give me a ride. When I opened this door, the driver took one look at me and said “What the hell is up with you?” I was covered in blood from cutting my jaw on the porch in the scuffle, and now I felt the pain of it seeping in. I told the driver the story as he brought me to the next gas station to get cleaned up. He made damn sure I got to Oxford that night. The bars were closed by then.

I made it to my friend Suzy’s house that night and fell asleep on her couch. She woke me up in the morning with a look of horror on her face, as my initial dressing of the wound was not too thorough and the blood was all over me again. It wasn’t hard for Suzy to convince me to get off the road, move in with her, and get a job. She and I had known each other since day one and we understood each other intuitively. After the adventures of the night before, I was ready to have a place to call home again. Hanging out with Suzy was like home. I got a job, paid Eddie off the few hundred I still owed him, and started anew. I had done my last solo hitchhiking that August night of 1986.

What I had gained and what I had lost in this time on the road were, and are, immeasurable gifts that remain with me today. Simply put, we are always alone, and we are never alone.

We met in 1985, Becky and I, her first year at Miami. She lived in the same dorm as my girlfriend, Marcie. Marcie’s roommate, Julie, asphyxiated herself in her garage that first winter of their freshman year. I drove Gina, Marcie, and Becky to the funeral. It seems this was the first major interaction for Gina, Becky, and me, this somber drive as young adults trying to make sense of what had happened with our friend Julie. We were friends already, but this experience cut through to a different level and bonded us in a different way. The rain was light yet steady on the drive back to Oxford and the image of the water droplets moving oddly up the window and the deep silence in the car remain etched into my memory today.

In that year, Gina and Becky became fast friends who came over to our apartment with regularity. We had a group of eight to twelve on any given night in those days and Gina and Becky were nearly always part of the core group we passed our evenings with. To this day, much of this group of friends still get together. Those early bonds endure through shared experience.

I was in a couple different relationships over the next year or so as Becky and I continued to develop a wonderful friendship. We had such fun together. Beck was a real trooper and would go on hikes and river runs with anyone at a moment’s notice, and then pour or serve the drinks in the evenings at the local establishment.

Wedding Day, February 14, 1990

As others slowly began pairing up or moving on, Becky and I often found each other as cuddling partners at the Grateful Dead shows and other gatherings. We were both shy in this way, though, and cuddling was it for a long time, until the night her sister got married. Our friends, Joe and Maura, were also at the wedding and they had been pushing Beck and me to get together for a while. Once the wedding and reception were over, we all went back to the hotel room, and Becky was determined to get that goodnight kiss. She took that goodnight kiss, in fact, and more. We never looked back, and our oldest son Alex was conceived on New Year’s Eve 1989.

I was not alone anymore...

We moved to Oregon in 1991, ready to explore the West Coast, and settled near the Eugene area. Two more boys, Aaron and Zeke, were home birthed there. We lived off the grid in a 20’ canvas yurt as a tight knit family, growing much of our own food and generally living life day to day. It was a wonderful and also challenging time. The experience I had in the yurt was highly impactful in many ways. I really got to know myself much better in this time as I observed the old patterns I had been taught coming to the surface. I had to choose to either repeat these patterns or make a change in how I wanted to raise the boys. The deep woods of the Oregon Coast were the right environment to make such a change. The little trickling streams and quiet depths of the woods allowed for the mind to settle, to meet the natural rhythms.

In the natural rhythms there is not a rush to find a finish. I learned and trained intensely in many things during this time—Tai Chi, meditation, deep nature hikes, fasting, reading, sitting, listening, and most importantly, service. It was sponge time and I absorbed as much of this environment as possible by living fully with whatever each day brought forward.

Alex, Beck and Me

Becky and I were kids ourselves, really, when we moved into the yurt in 1992. With Alex 2 years old, and Aaron just born, we had our hands full. The week we moved into the yurt was the coldest week of that winter, which froze the gravity-fed water lines, leaving us without running water and only a lantern and candles for light. Jump right in, indeed. I pulled the black plastic piping apart from its feed 200 feet up the hill and laid it in the stream to melt in thirty foot sections, sending long tubular ice cores down into the basin pool. When all of the lines were free of ice, I put them back together so we could have some water to prepare dinner. It took many hours to complete this simple task, and yet that is how things are in such an environment. One works with what one has and keeps the basic necessities moving as well as possible. Great lessons in patience and perseverance I learned in this time off the grid. Plans became impractical; we just woke up and went through our days, one at a time, and it was always interesting. One day, Alex realized how to release the emergency brake on the van... that was very interesting. Let’s just say sandals are not the best footwear when holding onto the front bumper of a Volkswagen van rolling downhill. Alex seemed to enjoy the ride more than I.

With no water heater or modern appliances, we boiled or warmed the spring water over fire daily in order to wash diapers, do dishes and occasionally wash ourselves. Living off the Oregon Coast meant a steady mist or rain, but the kids kept pooping so diapers needed to be washed daily. I took it as a personal challenge to do this task willingly and joyfully, the way I remembered reading about Gandhi cleaning lice-infested toilets with joy. I recycled an old 50-gallon pickle barrel as my main washtub, got a washboard from the thrift store, and hung a tarp from the edge of the yurt over my work area so I would not always be in the rain tending to the dirty diapers. That was how it went for eight months or so, our days spent hiking with the kids and doing our chores as needed, from securing the yurt from skunks to digging, planting, and harvesting gardens.

I worked a bit doing some landscaping for a neighbor to keep a little money coming in, but our needs for money were few so we had plenty of time for just “being” and living as a family in the woods. Often I felt like we lived in Winnie the Pooh’s forest, the pace of it all, so unforced and flowing, in keeping with the rhythms of the sun and the seasons.

Alex was a natural at yurt life, he took to it right away. I potty-trained him by teaching him how to dig his own hole in the woods to poop (the outhouse was too big for him) and how to cover his tracks well. He really seemed a natural fit to living this way—always curious, easily excited by the simple things, walking around with his hands folded behind his back, like he was Plato. He was easy in all ways; he took 2-3 hour naps every day, enjoyed a regular bedtime around 7 each night and slept in until 7 or 8 the next morning. Becky and I thought, “This parenting thing is easy!”

Aaron, on the other hand, had a lot of trouble settling into this world from the time he was born. Anytime he was tired, he would scream and scream as if he hated coming into or leaving the world. This meant naptime and bedtime were challenging in a limited space with four people. Early in Aaron’s life, an older Sikh gentleman came to visit us. His name was Gurudev. A martial arts master and a very large human being, he held Aaron in his enormous arms and smiled. With a twinkle in his eye, he said something to me quietly about not having seen Aaron for a few thousand years and advised me to take up a chanting practice to help Aaron ground here on this earth. Well, it was time to put this advice into practice now. Aaron was clearly not happy and no one in the yurt would be either if he kept screaming so our walking chant became a regular practice. Holding him in the classic facing forward position, I practiced the Tai Chi walk along with chanting for 20-30 minutes twice daily until slowly his screams would turn to hums and Aaron would let go to settle into the dream world once again. I learned even more deeply how to breathe and walk well in these daily excursions of ours. What a gift Aaron had given me in screaming so much, a gift we continue to share and enjoy with each other to this day. We both understand how connected breath is to everything in life and the living breath’s power to completely and radically transform a moment, or a lifetime.

During this time I was brought face to face with how deeply I had been conditioned to react or respond to life in measured and predictable ways. I was asking Alex to help me with something around the yurt and to my mind he was not doing it well enough or fast enough. (He was 3 years old.) I reacted impatiently to my expectations and remembered how my own father would be impatient with me if I did not hold the flashlight in just the right spot. It was a startling realization to see I was repeating the same behavior I had been conditioned with. I vowed then and there to make a change and not allow this to impact my children’s life the way I could clearly see how it had impacted mine. Why was I angry about a three-year-old not doing EXACTLY what I wanted? Was there really a valid reason for the anger and impatience or was I repeating what I had been conditioned to use as a response? I had no choice but to face the fact I was merely repeating and, in this process, doing damage to my own child now, creating fear and tension where it need not exist. I took a couple good deep breaths and allowed all this to sink in, gave Alex a hug, and apologized for being angry and impatient with him. He forgave instantly; kids are like that.

I had to apologize to Alex many more times. These old patterns are deeply ingrained in us all from the time we are very young—by parents, religion, society and the models we are taught to think of ourselves and the world we think we see outside of ourselves. We have to be attentive to these patterns and honest when we see them, or we will repeat what was handed down and never realize it.

My parents came to visit us at the yurt in 1992. It had been an uneasy decade for us. From the ages of 16 to 26, my relationship to my parents was strained as I was rejecting all I had been taught and looking to find myself and who I was outside of who I had been told I was. The yurt was not comfortable to Mom and Dad. They went to the hotel room they had booked in town after a quick walk around our very little space that we loved so much. We drove in to meet them a bit later. I was not happy and holding onto these thoughts was only feeding this feeling as we drove away from our little piece of paradise to go to a hotel room. When we got to the hotel room it started up—the arguing between Dad and me—although I had carried it in repetitive thought all the way in, to be fair. What were we fighting about? Religion and politics, what else? Becky and Mom were tired of it right away and let us know with some not so subtle hints.

Dad and I walked outside to continue our discussion, as there was a covered back porch area outside the hotel. We kept on in the same manner for a bit outside just as we were inside and I remember both of us saying in raised tones that all too familiar refrain: “You are not listening to me!”

Well, this time Dad said, “You are right. I am not listening to you.”

Wow! This is worth handing down, this type of humility and ability to understand when one has closed a door. All the defenses I had built over those early years melted away with this gift my Dad was giving me right now. I also acknowledged I was not listening to him. We exchanged words of love and respect, words not often expressed as I was growing up, and even more walls fell down. We embraced and the feeling was as real as the tears streaming down both our cheeks. This moment of meeting each other as human beings both aware they were not open or listening—being honest, basically—was cathartic in our relationship, which is now rich and full. We both stopped trying to change the other person that day and accepted each other as we actually are. It is the only way to forgive and love anew. I love my parents dearly. My Dad taught me so much that afternoon on a porch in Eugene, Oregon, about being honest even when it is hard to do. We do not talk religion or politics anymore.

When Zeke began to grow in the belly of Becky it was time for the “grid” in our lives once again. We moved out of the yurt and into a little house in town, nearly twice the size of the yurt. Zeke was born in this little house in May of ‘94, into my hands with Alex looking over the top bunk of the “family bed” I had built in the main bedroom. Becky had been her usual strong self as a birther of kids; this labor lasted only five hours and was all natural with our midwife, Joni, keeping a watchful eye the whole time. We had not thought of names and did not know gender like parents do these days. With one final push, out of the womb and into my hands he came. I do not have auditory experiences often that stand out, but Zeke’s birth was an auditory experience I will not forget. The second he was in my hands, all I heard in my head was this name repeating over and over—Ezekial, Ezekial, Ezekial….

I looked to Becky and said, “What do you think of Ezekial?” I told her I kept hearing it over and over and Becky liked it. Zeke arrived with his own back-up band and joined the family. Makes sense, it does; that boy has always had good rhythm.

Leaving Oregon and moving back home to Oxford in the fall of 1994, we were ready for a place with roots and the Midwest had that feel for both Becky and me. We landed on an organic 161-acre farm still worked on by a kindly older gentleman of nearly 90 years. The kids were home-schooled for a time and then gradually brought into the school systems. Another year or so passed and we bought a little house in town, the home we still have today, in the fall of 1997. Shortly after this, Becky began to notice some odd pains, pinches she called them. Our lives were about to irrevocably change.

Our rock—Becky, Mom, wife, friend—had breast cancer.

The next four years brought lessons immeasurable for all of us. Becky was the same pillar of strength in illness as she was in health. She taught me so much about how to handle adversity with grace and a smile. After some research and contemplation, Becky had the mastectomy. There was a bit of lymph node involvement discovered in the operation. They removed what they saw, but this is never a good thing to see as the lymphatic system connects throughout the body.

Chemotherapy was next due to the involvement of the lymph nodes. Becky had very tough veins for the nurses to find. This often added difficulty to her experience when needles were involved. She surely took it like a trooper, but the right nurse was always a good sight to see. We got to know people over these years, people going through similar challenges and the nurses who helped them. Karen was the right nurse for Becky and seemed to be there for almost half of our appointments. She was a godsend. When you are going through cancer, these little things that work out in your favor make all the difference in a day. Becky made cool head wraps and hats when she lost her hair and kept on living well in many ways, roller blading at Hueston Woods State Park, crafting with the kids and enjoying time with friends. She was in remission for a time, all signs clear. Becky’s good friend Carolyn threw a "no-mo-chemo" party. I remember, now in writing this, how it was a joyous occasion with many who had been a part of our journey.

Several months later, Becky was standing in the kitchen, and she stretched her arm back over her head, with a look on her face that I recognized right away. The pinch... she was feeling it again. The cancer had returned and metastasized.

Images from the doctors revealed the cancer had spread to areas in the liver and the neck and possibly in other places as well. We explored alternative treatments to see if anything would work, and went to a clinic in Arizona that was using new and innovative treatments, but none seemed to slow the progressive rise in her marker numbers and symptoms. We tried the full scale chemo assault again on the doctors’ recommendation, but by Thanksgiving of 2002, Becky was having a lot of difficulty in breathing and had to have her lungs drained regularly.

On New Year’s Eve, heading into 2003, we had a little video camera that I used to record all five of us sitting in the kitchen and great room talking about New Year’s resolutions and what we had learned in the last year. It was a lot of fun recording it all, a certain distance with the lens in between. After the ball dropped, we all did a little dance and celebrated with various noisemakers. Becky was on a chair near the kitchen’s edge to the great room where the dancing was happening. I turned the camera to her, she smiled and waved a little “curly-hand-right-next-to-her-cheek” wave. I felt so deeply, right in that moment, that this was her last year and it tore me up inside. The image struck me deeply.

A short time later, I began to carry Becky up the stairs. She did not like being carried up the stairs, but many days they were too much for her to walk. The chemo assault did knock some of the tumors back for a few weeks and gave us all a window of time in which we were able to go on one cruise with the boys and another with all of my family in the spring of 2003 for my parents’ anniversary. I pushed Becky and her oxygen tank in a wheelchair through the streets of Mexico and around the boats in the harbor. The boys surely enjoyed the whole experience. Twenty-four hour soft-served ice cream and pizza, multiple pools, arcades and places to explore was a new experience in their life. Cruises were not high on our agenda as parents raising these guys in a much simpler way. Even with talking openly and regularly about what was happening with their mom, the boys did not know too consciously at that point. I knew we did not have much time left with their mother and enjoyed just being with Becky in whatever ways we could manage her symptoms. The chemo treatments had manifested some nasty side effects in her feet with blistering and swelling, so this vacation was a balance of being able to go out and see across the vast ocean as a family but also of managing the downside of the chemical assault.

Writing

Feelings had to be expressed and I began to write more and more, to help me understand what was happening in our lives... mostly emails to family and friends to keep them informed of what and how we were doing, reaching out to many in sharing the journey. In writing, I had a chance to see from a witness perspective what can be hard to see from within the process of dying and death. We called Hospice in early July to try and help ease the process we were going through and get Becky some much deserved comfort. She had a blood transfusion to get her energy level up as she had a difficult time moving around or walking at all some days. Becky was ready for all the different chemicals to be out of her system. She had developed a rash and other sores which seemed an indication of too much toxicity in her system, so we juiced with some good flushing drinks and employed methods nearer to our hearts to help clean out her system and hopefully give her some peace. One mid-July afternoon, six women on horseback walked up into our backyard, dear friends of Becky’s. I helped Becky out to the balcony porch to see and feel this display of love and affection unfolding in the backyard. This was the last time Becky went outside.

A large dry leaf dangles from the great maple tree which overlooks the stream. The wind blows, the leaf lets go and falls into the stream. Floating along, swiftly through the rapids and lazily through the pools, the leaf flows as the stream guides. Sometimes I feel like the leaf, unable to control where my destination may be. Other times, I remember just how glorious it is to be a leaf, floating on the stream of life… -JN

Thursday, July 24, 2003

(Message to families) 7:51 a.m.–Becky is free from the pain her body has been having and we all have a very powerful ally in the wind with us. Thank you for all your thoughts and prayers. She went peacefully this morning and now can dance as only Becky can.

I came home from work and went directly upstairs, as I had done so many days, weeks, months and years. Getting to the top step and rounding the corner into the master bedroom, expectation and actuality came face to face. She wasn’t there. Becky was gone.

The house was quiet, the boys still at school and I lay down and wept, heavy with the undeniable fact of this world now without Becky in it. She was never going to be there when I came home again. Tears are agents of healing when allowed to burst forth without resistance or prompting. Some healing began to work its way into my life that afternoon, curled up and weeping on the bed we had shared for so long. Death changes things in a manner like nothing else and each processes it the way they do. We stayed together as a pack, the boys and I, and the days passed into weeks and then months. We kept busy and occupied in our day to day, playing games just as we had for all our years together. Things were very different and yet somewhat the same, at the same time. Death had come and Becky was not with us in the room now and yet we were still here doing much the same as when she was here. The common room upstairs was the hub of slow healing as a group. We played there, fought there and cried there.

It had been a couple months since her passing now and I had gotten back to work building a home for my friends and clients, Dennis and Terry. We designed it together after their old home burned down around the same time Becky was passing. It was fun to be back in the doing mode, though I was easing my way in and having others do the framing for me. I drove a nail or two a day to be involved in the framing and to keep an eye on things, but both of the framers were old friends and 30-year carpenters. The home was in good hands for me to be a bystander at that point.

I spent a lot of time at home and with the boys as we all adjusted to this new family of four now. The boys all being vegetarian, I cooked a lot of beans—I surely remember this. The boys were so flexible, they seemed to adapt to their mother’s passing and remained themselves—growing, joking, learning and farting. Yes, lots of beans indeed.

Becky’s close friend, Betsy, helped us a lot in this time as well, just as she had helped so greatly in Becky’s last year or so with us here. The boys were growing fast so I designed and rebuilt the upstairs of the house to incorporate each of them having their own small bedrooms and a common room for all to gather and play games, etc. We had a modest life insurance policy we used for this change to the home and for a trip the next summer to spread Becky’s ashes back to two of her most beloved places out west, Mt. Shasta and the Oregon Coast.

A favorite memory of that trip out West was looking in the rear view mirror while driving north and seeing Zeke had put his headphones on the urn carrying Becky’s ashes, which he had in his lap. Yeah, the boys were adjusting well and continuing to be themselves.

Seven years later, I was overcome with grief during an afternoon on a quiet river we canoed annually. Floating along in a solo canoe, the boys all in kayaks, I turned around and saw Aaron 30 yards back standing on the kayak prow, his typical floating down the river position. I pulled the canoe to the side as he came closer and the wave of grief was undeniable, the “presence” of Becky mixed in with the feeling. She would have so enjoyed this day. This was one of her favorite annual events as well. Aaron had grown his hair long that year. Becky would have loved this. All of this energy started to build in me as he approached with the goofy smile on his face. I think I was able to get out the words, “Your mother would have loved your long hair,” before he floated by the sobbing mess his father was on the banks of the river.

Later we talked about it, but Aaron had no idea what I was actually feeling in that moment. He was kayaking and did not notice what I was doing. I was feeling intensity that comes spontaneously, unforced. Grief like this—tears shed into moving spring water—is not imagined into being—not an obligation. Grief takes over the scene and you are powerless to affect it. If we allow the tears to flow, this kind of openness and vulnerability is so very freeing indeed.

Becky and I were always open and honest in our communications, and we had discussed what might happen after she was gone. She wanted me to be in a relationship, for my sake and for the boys’ sake—they were 9, 10, and 12 when she passed. Becky had a particular woman she pointed me toward, a woman we both knew well and for many years, Laurie Traveline. This honesty in our relationship over the years was such a huge help to me being able to even think about or look at another woman. The value of honest communication in marriage is that there is nothing left unsaid and so no remorse or regret to pick up and carry for one’s life. Becky wanted me to move on. We both knew she was dying and we were both unafraid to look directly to the facts of the matter, so look and talk about it we did. I will always be grateful for Becky’s willingness to do this in her final months here. I have tried to do the same with Laurie now as she is in the position I was in. I do want Laurie to be able to move on smoothly into the rest of her life whenever I go, just as Becky wished for me. Communication is a bridge we have as human beings that can be so helpful in freeing us to live well, if we communicate honestly and openly with each other, every day.

Speaking honestly, there is a part of the story I do not want to tell. I retreated into the garage I had built, communicating more and more online, writing in philosophy forums, arguing just to argue with other faceless people also missing something in their life and looking to connect somehow. I used an old desk top computer and faced a windowless wall, playing a lot of chess and staying up late. The boys were sound asleep and I was alone in a 20 x 20 garage, talking to myself mostly.

I had to be up by 7 a.m. to make sure they were good to go for school. Those boys were really good at independence, getting ready and making their own lunch. I think Alex started making his when he was 6 or so. My role here was easy.

I had settled into a rut, and a certain unease came with it. I was not connected to the world the same way and it could be felt, like a dull ache. I was holding myself back from the world, from relationships, still reeling from the shock of losing Becky. I had found a relative peace with her death, but this new norm was not working out so well. Numbness, our old friend, how easily you slip into our lives when we disconnect from the world and interaction. Death is such a powerful event we do not even know its impact on our life until much later, if ever we know it fully at all. It was clear to me that I had pulled back from the world to find a relative peace and feeling of isolated safety from the pain of relationship, especially with the potential of death as part of any relationship. Could I handle losing love again, feeling that loss again? Easier to be safe and keep myself at a safe distance was the underlying thinking I was trying to convince myself of. Or, at least that is what my actions were demonstrating. A wall without windows is a sure symbol I am looking at a dead end and did not want to look outside of this. I realized that it was time to reach out to the world again.

We first met in August of 1986, Laurie and I. She came over with her friend, Robin, to a party at the apartment I shared with Suzy. Robin and her roommate, Meredith, were regular visitors but this was the first time I had met Laurie directly. We knew the same friends and would occasionally see each other around town or at parties but did not know each other well at this point. Our next “real” meeting was after Becky and I had moved back from Oregon. Laurie came to a party we threw at the Morning Sun organic farm in 1996. The next year, 1997, she began learning the Wu form Tai Chi I was teaching and joined our group of Monday night dancers. She was an exceptional student and had much passion for the dance; this was clear early on to me. For most students, Tai Chi was a nice weekly element in their life but did not extend outside of the class time into an actual daily practice. Laurie was clearly also practicing the form on her own time.

When the next Monday came around, she was well versed in the previous week’s moves. This only happens with a commitment and dedication born of interest. For a teacher, nothing more is needed than to see a candle self-ignite and burn of its own accord. I knew she would have this understanding for life as she had made it her own in the practicing of it. When Becky was first diagnosed in 1998, Laurie was one of the first to know. She worked at a local restaurant near the hospital, and Becky and I would stop there occasionally for lunch when we were down for her testing, treatments, etc. We all continued to deepen our friendship over the next few years. Becky and I would go see Laurie performing at her music gigs in Oxford and sometimes down to Cincinnati. Laurie, Becky, and a few other women went on a New York City trip together in 2002, though Laurie self-deprecatingly says she was a “bit part” in the women’s movement around Becky. She was close in the circle that surrounded me and Becky with so much love in a difficult time.

In the fall of 2003, I reached out to Laurie, expressing that I had feelings for her. In talking with Becky before she passed, the feelings were planted, then watered with friendship, grief, and the passage of time, until they were strong enough to express directly. We began to spend more and more time together

And the relationship grew into all areas. We shuttled back and forth for meetings which became less and less clandestine. By winter, we were seeing each other regularly, and Laurie was having dinners some nights with the boys and me. We both hesitated, I think, at this point.

Laurie had lived for 25 years as a strong, independent woman, and the boys and I had lived as a pack for a long time, so there were plenty of issues to work through in bringing these two ways of being into one that operated as a whole, with all for each other. Laurie kept her apartment in Cincinnati and we kept a certain distance for a couple years, breaking up a few times along the way when one or the other of our stubborn streaks held sway for a bit too long. We were not good at staying apart long, though, and after our last whopper break up, I decided I had to commit, that I was still holding myself back. I think Kate may have said, “Just get a ring, dude!” I did not get a ring yet as Laurie had worked for a jeweler and has her own tastes and styles, so I knew better than to pick one out for her. However, I did ask, and ask and ask… God love her, Laurie was not ready to just say yes. I can understand; I cannot imagine living with me either. I told her I would give her fifty years, over and over again, to let her know I was committed fully now, ready to enter into this type of long-term commitment again. On July 22, 2007, she said yes and we married on December 22, 2007.

We just crossed over our seventh anniversary and it was our favorite anniversary ever. We continue to learn and grow together!

These last two years have been quite an adjustment, for all of us, and this is the nature of lasting relationship. We all change roles from time to time and have to adapt to life’s ever changing nature. Laurie has had to adjust more than anyone as the sole income earner now and also the caregiver to a guy who, on many days, needs a lot of care giving. We have great systems and strong communication, which helps make working with illness and care giving much easier. Laurie has been the rock for me to make it through this time, not only in sharing her love but also in keeping her eye on me. I forget things at times, can double up on medicines if not careful... these kinds of things. I feel for her as it keeps a person on a certain alert level. I remember my heightened awareness as the caregiver of Becky. It is hard to ever fully relax when you know your partner is walking a cliff’s edge.

I am always happy when Laurie has a show to perform, to get out and express herself this way. She is a muse and this is so very important in her life and to who she is as a human being; what she shares with this world, her students, the community, our dog, Rosalita, and me lying around listening. Relationships often involve sacrifice; we learn this as parents of young kids. Laurie never had kids until we married and those boys were not that young then. So, this sacrifice has found her now being a caregiver. She has adjusted well and I am deeply thankful for how well she continues to adapt to what is a constantly changing environment.

It was a small job in the grand ballroom at the Community Arts Center that week on my schedule, but the timing was critical. There was a wedding on the weekend, so I had to be out of there by Friday afternoon to accommodate all involved in these kind of production. The job was to install patches to a mixed red and white oak, eighty-year-old parquet flooring installed over concrete. No easy trick indeed. Then, I had to color match the patches to blend as well as possible to the overall ballroom flooring. Many people would be on the floor in five days so everything had to go smoothly for the timing to work out. We had dozens of patches scattered through the grand ballroom, all due to improper installation long ago. The last tongue of the tongue-and-groove was not filled and so became weak over time and snapped in many places, leaving ¼” gaps, which posed danger to high heels, and there were many splinters after the breaks became exposed. On Monday, I did all the assessment and detailed cut markings of the floor myself, as my helpers were finishing another job. On Tuesday, the removal began in earnest, with my helpers there to remove as I made all the cuts. Once the removal was far enough along, I was able to get some measurements, go to my shop, and begin to plane the oak down to the varying thicknesses we would need to work this out. Concrete is not the best substrate for hardwood flooring, especially old concrete. I planed all the boards down to differing thicknesses and put a first coat of stain on them all as my helpers, Brian and Izzy, continued the removal and clean out in the ballroom.

I checked in with them as I drove to Ace Hardware where I was going to buy glue for the installation. I left all the flooring boards back at the shop on the drying racks. I would be back before long to get the first coat of polyurethane on, but wanted the stain to have enough time to penetrate well for the color I was looking to meet. It took a bit longer to get back than I thought it would. I remember setting the glue down, signing my bill at the checkout counter, seeing my friend and fellow carpenter Bill on the other side of the counter, grabbing my bag of glue, and heading out to the truck.

Things got a bit interesting then as my next few memories are of driving by Ace Hardware again and again. The third time I went by the store I had left a few minutes before, alarm bells started going off in my thinking. I knew something was wrong, but I did not know what it was. I pulled to the side of the road and stopped the truck, looking at my phone now to see if I could use it. I did not know how. Ok, interesting.

I stepped out of the truck and looked toward where I knew my home was, trying to get a reference for this four-block distance. I said aloud to myself standing there, “Tai Chi training, Joe, the body knows the way home.” I was aware that the mind was not making sense of things and aware that the body had its own understanding that could operate if the mind was out of the way. I drove to the next block which I knew was the road that led to my house. My next memory is pulling up in front of my house. I had made the four-block journey from circling Ace Hardware and stopped in front of my house.

I went inside and let Rosalita out to go potty. Still having cognitive issues, I knew I could not be responsible for her, so got her quickly back inside once she had taken care of her doggy business. I called my brother-in-law, Joe B., a neurologist at a large hospital in Cincinnati, and told him what was happening. He ran me through a quick questionnaire and determined I was having “right side” issues and needed to call 911. Since I live four blocks straight down from the hospital, had pulled in pointing in that direction and seemed to be able to think again, I drove myself there immediately. I walked in the emergency entry, told the staff I thought I was having a stroke and gave them Joe’s information to contact for details. They whisked me off pretty quickly to an exam room for some imaging. I had a minute to call Izzy and Brian and had them get the first coat of polyurethane on the remaining boards so we could install the next morning. Ok, that was taken care of, what now? Oh yes, I am in the hospital getting into an MRI machine, right.

Once I had finished with the imaging, Kate called me and then stopped to see me at the hospital. It was shaping up to be a party. My dentist and friend, Dave, called about then as well, while I waited for results of the imaging. I told him to hang on because a nurse was coming to see me. He said “Where are you?” I told him I was at the hospital and he said, “Why the hell are you answering your phone?” I like to have fun, no matter what is happening, I guess. Whatever is happening is just that—what is happening? Now that my brain was able to think fully again, I wanted to use it and a phone call was using it!

A few minutes later, the doctor came back and I could see he had some relevant information to share. The imaging revealed a large mass and several lesions, he said. Ok. I asked if he had talked to Joe B. He confirmed this information with Joe and was going to print images off for us to take down to Joe directly. Laurie had finished work now and made it to the party. I seemed to be fine at that point as my thinking was clear and I had no physical issues. We were released with the films they gave us to give to Joe B. We headed home and began to look into information online about brain tumors. When I read about glioblastoma, I had a feeling right away. I tend to trust those initial feelings. Laurie and I arranged to bring the films down to Joe in the afternoon.

I needed the morning to finish the installation of flooring at the Arts Center and did not like to leave a wedding and a bride hanging. This job had to get done and I had to do it. I saw no other option and the timing worked out with Joe B., as well, since he needed the films for review before the tumor board on Wednesday. Izzy, Brian, and I installed the floor that next morning to the point I was comfortable leaving the job site for them to finish and for me to take this film down to Joe B. with Laurie.

After he reviewed the films, Joe called and wanted us to come in early the next day, Thanksgiving, to prep for likely surgery. He has seen many images like this in his career and knew the immediate danger it posed, but we had people in from out of town, so I politely declined and said I would come in Friday morning. I am an epic pain in the ass at times, or so I have been told.

We went in Friday morning. Pain was soon to be an every-moment part of the next few days’ experience. Test after test, scan after scan, poke after poke, I was a pincushion with a large headache going on. By 2:00 Friday afternoon, the imaging had finished and they were doing the final piece, the spinal tap to check for potential infections that may be showing up in some of the images. It is not a small procedure, the spinal tap. In this case, they had to drain 40 cc’s of cerebral fluid, the fluid that keeps the brain floating in its cranial enclosure. It took three attempts before the Doctor was satisfied with the results. I was given some pain medication at that point as it would no longer interfere with anything.

Laurie and Kate came to see me and Laurie tells me I was quite jovial. Drugs will do that, especially after such a day as this day after Thanksgiving in 2012. Later, everyone went home. I had surgery first thing in the morning and I was left alone. Feeling a little anxious and noticing that no one was really checking on me anymore, I got up and walked out of my room. I had no iv’s in at that point, just a hospital gown and a desire to get outside of the walls where I had spent a day inside, getting poked, prodded, and scanned. In the morning, they would cut my head open and see what is going on. So, yeah, I needed to get outside and I needed to do it that very moment. I made my way down the hall toward the front entry area and slipped outside on the north side of the building. It was only a block’s walk to be out of sight of the hospital entry area and I found a tree I could hold onto, wrap my arms around, and feel like I was touching something real in this surrealistic day I was immersed in. I “let go” into the tree and felt the inevitable return that comes with letting go, with acceptance. Giving and receiving are inherently connected. We have to reach out to the world to feel its return, reach to love, to feel love’s return, to complete the cycle of giving and receiving, to be one with the creative energy of interaction. This appearance of existing separately is not as solid as it appears, but we do have to reach outside of what we think to feel this connection and to be this connected as a state of being. So, in holding onto that tree, I knew the tree and I were the same thing really, events that collapsed into a Joe and a tree. Stardust gathering into form. Odd as that may sound, there is a sure peace in feeling it that does not involve thinking. My mind settled down and I went back inside and to my room; I was ready for surgery and went to sleep.

What follows on these next pages is my journey; recorded in Facebook postings, musings, and pictures over the last two years of having too much fun dying to stop now...

November 23, 2012

Half a Mind. I’ve got half a mind to do something crazy today. They must have stuck certs on my head when I was sleeping.

November 26, 2012

Alive!

November 28, 2012

I just had Zeke take a pic of my head so I could see what l had half a mind to do last weekend.

November 29, 2012

In case you have not heard the details, here they are... I have a malignant and aggressive form of brain cancer known as Glioblastoma Multiforme IV. This changes nothing about the manner I view life. I have loved life and living for many years now and will love every day I have upon this glorious earth for as long as I am here. Which, by modest estimates, is a few months to a few years... Sorry to be so blunt with you all, but if we can’t be real with each other there just is no point in being.

Acceptance…

How do we meet what happens in life? Information comes to us continually. How do we meet this information? If I meet it with expectation I am often disappointed. This is obvious enough. If I meet the information of the moment with fear I do not even see the information well at all, really. The fear has pulled the curtain down and only the swirling dust from the shade is seen moving around. So how do I meet information today in order that I understand what it is presenting to me in each moment? I have to accept it just as it is, it seems to me, in order to see and understand it clearly, just as it is.

The surgery was around 5:30 AM or so. While I was being prepped for moving to the operating room, lying on a stretcher I noted all that I could from the hallways and their orientation including the misplaced ceiling tiles someone could have put in better with a little attention to detail. All of this information is part of this little journey leading me to having my skull cut open. Maybe this preoccupation allows the mind to not obsess on what is about to happen, but I tend to do this no matter what. The out-of-place ceiling tiles really stuck with me and the only available perspective was looking up to them as they passed by.

Anyway, I got to the OR and they shaved parts of my hair off. I requested them to just take it all but they either did not believe I meant it or it was too far out of protocol, I do not really know. Recovery would have been easier with it all gone, but so it goes. As the time drew near, I saw the numbers of staff increasing quickly when in walked the surgeon. I puked into the garbage can next to me, looked up into his eyes and asked if he was feeling steady today. We both smiled and the gas mask came for me. Fade to black…

Acceptance, ah yes… As I awoke hours later I saw my brother-in-law Joe (chair of neurology at the hospital) and another doctor standing at the end of the bed. I knew the news was not good, the body language usually tells the tale quickly in these matters. I had done some research before coming to the hospital two days before and was not surprised to hear them speak to the reality of Glioblastoma Multiforme IV that they found inside this hardened head of mine. I listened intently, asked a few basic questions about prognosis and options and said, “OK, thanks…” Joe later told me he had to leave the room at that time as I just seemed to accept all of this information like a peanut butter and jelly sandwich. The other doctor (Dr. C.) talked to me some more after that, but all of this is rather fuzzy to my memory. I remember at some point Laurie and the boys coming in to see me and, according to the boys, I gave them 47 years of life lessons in 45 seconds, or tried to anyway. I had accepted the facts of my prognosis already and there was work to be done in communicating as much as I possibly could before they wheeled me out again. I do not tend to wait when I feel there is work to be done and I had just been told I might not have a ton of time left on the planet. And maybe, just maybe, the drugs from surgery had an effect on both the acceptance and the verbosity to follow.

So, that is one type of acceptance: accepting the information just as it is, with no coloring added to it through expectation or fear. In this accepting there is not much in the way of reaction, it is just another peanut butter and jelly sandwich; one takes it just as it is. Now, with acceptance as it pertains to healing and resistance, there is much more to say about this, but the initial “receiving” of information is critical, as shock is difficult to uproot once deeply set in place. The years I had spent in “training” and quiet simplicity surely aided the impartial receiving of information or perhaps I got lucky in the nonfreaked out gene department. I really do not know, but none of this was freaking me out. I have said for years and years that “life is what happens” and this is how I still view life. This information was still neutral information as part of “what happens.” I could accept that and not have shock penetrate the system of the body or mind, and yet also not deny the actuality of the information either. This attitude is relevant or there will be extra trauma added which will lengthen recovery time and embed a residual storage of fear. Denial of the actuality is not useful, but may be part of the process of looking to it. Allow for this, be attentive to its movement and the denial will pass. It is not the easiest thing to be told you have an incurable cancer and likely 16 months or so to live. Still, it is the most efficient and effective way to meet information—being attentive. If we are attentive in the midst of our every-days, we see what is here, accept it exactly as it is, and resistance does not have an opportunity to set reaction into motion, with all the conflict this engenders…

November 29, 2012

Boo! Now, cut it out... life is to be lived.

I know of no joy greater than giving, and, truly, giving is also entirely selfish... the rewards of giving are so instantaneous it is addicting.

December 1, 2012

Another day of sitting down showers and playing the shakuhachi, what could be more grand Glioblastoma, kind of rolls right off the tongue…

December 2, 2012

This wonderful quote was sent to me yesterday by a new facebook friend. She knows me well to have selected this.

”Be content with what you have; rejoice in the way things are. When you realize there is nothing lacking, the whole world belongs to you.”

-Lao Tsu

December 8, 2012

After many doctor appointments and consultations, I have decided to go ahead with radiation and chemotherapy as the next step in treatment. The care I have been given to date has left me in the best possible situation for these combined modalities to have effectiveness, so I will be starting these treatments within the next couple weeks. As you may have surmised by now, keeping my mouth shut is not my strong suit, so I am sure I will keep you all updated as the process unfolds.

December 12, 2012

The prescription for the chemo pill comes to $15,000.00 for six weeks. Thankfully, I have paid my insurance premiums and high deductible as the insurance company picks up the tab from that point on. What about those who are not fortunate enough to afford medical insurance?

December 13, 2012

Fascinating what they can do in today’s medical environment. A warm mesh like fabric was draped across my face and molded to make the perfect fit for the radiation mask. I opened my nostrils a bit extra as the mask was taking shape so I could take the type of breath I like during the actual radiation treatments. I have learned that when a nurse asks you to take a deep breath they do not really mean a deep breath. I can inhale for a good long time and sink the wind to the core, and when it is going right this is effortless. The breath swims into your nose and fills the body with life giving oxygen. I think it is important for a person to remain empowered in a process that can be highly dis-empowering such as radiation treatments are, as little is in your control. Our breath, however, is always with us, so it seemed relevant to actualize the best potential as the mask was being formed.

”Breathe deep today, deeply into your abdomen, and feel how giving life is. Life is always giving, drink deep.”

-JN

December 18, 2012

The insurance companies and doctors finally got it all squared away and are shaking hands on the chemo pill. Fed-Ex brings it tomorrow and I take it and head for the radiation tomorrow afternoon. It kind of feels like the time from now to then is the time you spent as a kid waiting to get on the new big roller coaster. You could see it and hear it, even feel it as it rushes by you, but you are not yet quite on it.

As the rain falls the ground is readied. I love rainy mornings, a chance to listen to a little Jimi Hendrix “Rainy Day.” Lyrics to the song go like this: “Rainy day, rained all day... ain’t no use in getting uptight, just let it groove its own way...” I think I will take that to heart today and let it groove its own way… chemotherapy and radiation begins.

December 20, 2012

A month of change indeed: business, health, life, death, family, relationship, uncertainty, all in the cauldron now and mixing…

December 21, 2012 (Post Mayan Apocalypse Projection)

I sure am glad the world is still spinning for us all. I am having way too much fun dying to stop now… :-)

December 22, 2012

To listen to all three of the boys playing video games and cursing together is sweet music to my ears this holiday season...

December 28, 2012

I hear songs that mirror what I am doing all the time. The brain has recorded all these songs for years and regurgitates them in context. Since there was no chemo song stored in my brain, the brain came up with one, so now every day when I take the chemo pill I hear “Chemo Chemo, sucking down some chemo now, boom boom boom... chemo chemo, sucking down some chemo now.” The oncologist gave me a funny look when I sang it to him yesterday but I continue to find the more I make friends with what is happening, the more comfortable I am.

December 29, 2012

If anyone needs a wifi hotspot, my head might work for that… Where the radiation is impacting the skull it stays hot throughout the day and into the night (and for months after this).

January 3, 2013

Papa Bear instincts are awesome. I want to thank my son, Aaron, for getting his wisdom teeth and a cyst removed from his gum line yesterday, kicking that gear right back in. Nothing like danger to your children to light a fire under your butt. I feel great and have since his surgery yesterday. Thanks again, Aaron, very selfless of you...

January 7, 2013

”If you cannot find the truth right where you are, where else do you expect to find it?”

- Dogen

January 10, 2013

All psychological suffering originates in what we think about what happens…

January 12, 2013

There is no path to truth. Truth must be discovered, but there is no formula for its discovery. What is formulated is not true. You must set out on the uncharted sea, and the uncharted sea is yourself. You must set out to discover yourself, but not according to any plan or pattern, for then there is no discovery. Discovery brings joy — not the remembered, comparative joy, but joy that is ever new. Self-knowledge is the beginning of wisdom in whose tranquility and silence there is the immeasurable.

- Commentaries on Living Series I, My Path and Your Path, Jiddu Krishnamurti

January 24, 2013

My daily machine visit

January 26, 2013

Life is what happens. Have a nice weekend all…

January 28, 2013

Quadruple helix DNA, molecular 3-d printing, stem cell and other genetic advances, the growth in understanding the human body and its makeup expands every day. Gene Roddenberry, good work. Have patience, we are getting there...

January 31, 2013

The status bar asks me how I am feeling. Like a marathoner at mile 21 or so...

January 24, 2013

My daily machine visit

January 26, 2013

Life is what happens. Have a nice weekend all…

January 28, 2013

Quadruple helix DNA, molecular 3-d printing, stem cell and other genetic advances, the growth in understanding the human body and its makeup expands every day. Gene Roddenberry, good work. Have patience, we are getting there...

January 31, 2013

The status bar asks me how I am feeling. Like a marathoner at mile 21 or so...

February 8, 2013

Today is the final day of radiation for me... like being at an odd amusement park, the last couple of months. I wonder what ride will be the next one? I don’t like loops so much, but I do like hills, and that ride over there looks like it has some great hills. This is how I celebrate. I have missed being allowed to use my saws, but I just made a bunch of hardwood kindling as it is cooling off this weekend. Oh sawdust, I have missed your presence in my everyday...

Most are trained to go, go, go from the time we are very young. This works well in many areas of life, and not so well in others. Collateral damage happens with this pursuit when we move from the practical to the personal. We cannot see all the ramifications of our actions or more likely our reactions when it comes to assessing ourselves or others. Part of what we were taught is this self-judgment and it has not worked out so well as a whole for the planet or the personal. We are kind of a mess, humanity. We can come to understand this mess if we have a genuine interest in finding out. An urge to understand like this is more powerful than the fear we cover up by going so fast we miss the life that is before us every day. Follow the slow urges, they are whisperings from the path before you. The fast urges are desire and will fade out of fuel, leaving you empty of both depth in the experiencing of life and attentiveness to look at one’s life.

When I was learning Tai Chi, my teacher, Bruce, said it like this—all you were taught is fast. If you learn how to be slow, you can access any speed you need, as you need it. He was right. I have practically applied this wisdom all my life. It is not a matter of belief. So as I dove into doing— building benches, remodeling the laundry room, making garden beds, and spending time with many people, both family and friends—the pace has been unforced, like an organic garden taking shape. This pace continues to lend depth to the whole experience of impermanence, of dying. It is all so interesting to watch, really, as different people have come in at interesting times to help or just to visit. I never know what a day will bring but it continues to interest me to no end.

It is a joy to watch and be with each day, and the doing has been a great aspect of working with my condition as well. To keep the body active and with purpose seems very relevant with a terminal condition. The doing and engaging with all of life has been the way I have lived my entire life. It is not difficult to transfer this same state of being to the condition. Glioblastoma is part of what is, as many things have been in life. I love having this temporal experience. What a hoot living is, no matter what becomes part of the full experience. I am interested in understanding and learning as much as I can every day and have been

For a long time. This openness fills our life the way the growing gourd covers the soil, looking for open ground to explore. Learning is infectious like this. If what we are learning is an expression of ourselves, the understanding has a chance to unfold naturally, unforced. We are our experiencing as that ongoing understanding, or state of being attentive to what actually is. In this we stop fooling ourselves so much and letting fear pull the strings in our life.

February 18, 2013

Nothing like a fresh slab of maple and the raw potential it holds. “Who can wait while the mud settles,” asked Lao Tsu. This continues to guide me in how I live life and approach working with raw material (potential). If I rush forward, I will miss actualizing the fullest potential. So, I take off the bark and begin to look more closely, leaving the slab a few feet away where I can just look to it for a while. It has a story to tell, if I can hear and see it, of its path from a sapling struggling to get hold of the earth and reaching for the sun through its growth in many conditions and seasons. Am I attentive to this story or imposing my own?

Sitting bench of spalted maple, day one

First sanding and bark removal

Our home was built in 1904 by an escaped slave (3 times returned). At that time, fieldstone foundations were the norm, and over time, these weaken depending on conditions. Things do not always stay so level and square as the old foundation settles. In the 13 years we have lived here, I have opened every single wall, floor, and ceiling in this old home, leveled, straightened, rewired and insulated everything to make the home as efficient as possible. The original center is the laundry room, the final room for me to fix to meet the new level established and carried throughout the house now. Old builders had some cool ideas and ours surely did. He left artifacts in each wall. A 1904 penny, a newspaper and National Geographic of 1904 are some of these artifacts. As I finished the house a few years ago, I gathered all of the artifacts and put them in one toolbox along with adding a few of our own items to the box, which I buried into the ceiling for the next person who remodels this home to find.

February 23, 2013

Floor finished, back to the benches.

Rosalita making sure everything is level.

March 3, 2013

Information is neutral; it is the simple stating of what is known. How we receive that information determines whether it stays neutral or becomes tainted. In the last few months, I have received a ton of information and continued to dig for more, about glioblastoma, the type of brain cancer I have. Here is what I have discovered and this post will serve as information about my current status as well...

There is a gene called the MGMT gene, which is a DNA-repairing gene common to all people. In some people, this gene is silent or latent and in others, this gene is active. For me the gene is active, which means my body is working to repair damaged DNA constantly. Seems like a good thing, right? Well, yes and no. Chemotherapy is designed to do DNA damage, which is its goal in the hopes of slowing the progression of cancer. For me, though, because my body is constantly working to repair the damage, chemotherapy is not the wisest choice and though it still shows some effectiveness with people with the active MGMT gene, it is far less effective than if the gene was silent. Ok, neutral information, good to know.

In ten days or so, I will get scans of my brain to see where and what activity of glioblastoma remains in my brain, and the typical Western medical protocol is then to do another round of chemotherapy over the course of the next year, with the hopes being to extend life to 700-1200 days if the chemo is effective. However, knowing what I now know about the genetics of my body and the effectiveness of chemo in that situation the question becomes, “Do I want to extend life by this means or is there another approach that may or may not offer more chances of prolonging life but at least of enjoying life?” Chemo is not much fun, as many of you know, and working on my benches in my shop is lots of fun. I will get the scans and see what they say, but doubt that I will opt for the second round of chemotherapy.

This choice, to me, is not a resignation at all to glioblastoma taking me away from this planet, from this life. It is an understanding of the information I currently have and discerning the wisest course of action, or in this case the wisest potential inaction. Lao Tsu said, “In doing nothing, everything is accomplished.” Well, that statement runs up against our societal and cultural conditioning, but I learned long ago about the value of waiting when things are not clear. Many times I have walked away from the work I was doing because I could not clearly see what the piece of cherry or maple was telling me at the moment. It always paid off handsomely by letting the fog clear and then the proper course of action would inevitably show itself. That is my status update, just neutral information, and I wanted to share it with you all. It is lightly snowing outside and Rosalita and Solstice, the gray cat, are playing their game of not liking each other under the kitchen table. Have a great day all, enjoy it fully.

Bench # 1, Spalted Maple and Walnut interaction

March 12, 2013

First coat of oil...

So, the last scans look pretty good; the cavity from the tumor removal is infilling with what looks like healthy brain matter and the other spots formerly seen months ago are now gone. After talking with the oncologist and determining some more information, here is what I now know: Glioblastoma with no Temador (chemo) has a 13% chance of two-year survival, while with Temador you have a 26% chance of two-year survival. There are no studies charting what would happen if a person does the first round of chemo, but not the second because, frankly, my oncologist has never had someone not do the second round of chemo. So now I have more information but am not ready to decide whether to pursue a second round of chemo or not as yet. I have some bench pegs to make and taxes to do, so it is gestation time for me to allow what is my answer time to show itself. I always enjoy gestation time, which basically means not rushing into a decision. I appreciate everyone’s support but I also know that the best answers come in solitude and waiting, so wait I shall for now. I will let you all know as things become clearer, but it was surely nice to see a brain picture without a bunch of highlighter on it this morning...

March 15, 2013

It appears that wishful thinking may have colored my perception. The other spots I thought I saw that were gone are not gone, they are there as they were in the fall pictures. Also, there is not “new” brain matter growing in the area where the tumor was, it is like the seat cushion expanding when you stand up, meaning the existing brain matter is decompressing from where the tumor had been displacing it. I have decided to do the next round of chemo starting on Monday. It is 5 days on and then 21 days off, for 6 months minimum. If I can continue doing the work I love, meaning if the chemo does not take me out of that flow then I will go for the extension of a few month’s time. Time for a few more benches, games of chess with the boys, and sitting on the couch with my sweetie. Well worth it. Today, I glued up the first bench and will oil it this weekend.

March 16, 2013

– The final coat of oil.

March 18, 2013

So begins the walnut bench

March 21, 2013

I have not gotten too much physically done on the bench this week. I have had ample time to ponder its unfolding and draw ideas on the table before me. One of the little perks of feeling yucky is the time to ponder what the wave is saying before it crests. Day three of five and then three weeks off. I am good with that.

March 25, 2013

Not taking chemo yesterday is working out nicely. Counting this one, I have 21 days off before the next decision. I was knocked out by this double dosage of chemo, meaning I could not do much at all and felt pretty crappy for 5 of the last 7 days. Last night was the first evening I did not take the chemo after 5 days on and I am feeling okay today. Not great, but not horrible either.

The thing about belief is, it works much better if you have it. To believe in something is certainly not a cure all but it gives a person a frame within which to work and for many that is needed and comfortable. I used to meditate with an older gentleman in the early nineties, an early teacher of mine. We would sit in his perfectly-scaled GIZA pyramid. He had an Indian flute and I a Japanese one, and we would play for twenty minutes, sit for twenty minutes, play for twenty more, and then sit again and let the echo do its work. It was during this time that belief just left me, at least all or most of the beliefs that had been a product of the first twenty something years of my life. Getting to know yourself in some way like this will benefit anyone who undertakes such a discipline. We all can get caught up in our stories and miss what is right before us: this glorious moment. Well, I know it surely has benefited and continues to benefit me. I wanted to give the chemo an honest shake, do a full cycle and see what came of it. Testing it out, the prospect of “flowus-interruptus” is just too great a risk to continue doing it again. Thirteen of the eighteen days off before okay functioning returns for what the graphs show is little gain overall in the length of living, is too much of a gamble to take. In other words, I do not believe it will help me heal and more likely have the opposite effect, as I cannot do what I love and continue the protocol. I know this is crazy stuff to put out publicly and I apologize if it offends anyone, but telling the story helps me to step away from it as it is actually occurring. When that happens, when the “me” is out of the way, crazier stuff than talking openly about rejecting Western medical options happens. There is always a lot of pressure from the outside world to follow the protocol, and I understand the reasoning.

My best shot at extending my life and living well is staying in the flow of life and free of fear as fully as I am able. Period.

Now that I have looked closely at it all, studied every facet of this jewel I have before me, I am comfortable not doing the chemotherapy drug Temador anymore. Let the royal flush begin in earnest, I’ve got benches to make...

April 4, 2013

One of the awesome things about a terminal prognosis is the freedom of possibilities it enables. I am almost ready to get back to work without interruption, and nearly all the birds are back to town now so the whistling is good.

April 10, 2013

What oil does with walnut

Gardening is my favorite way to connect with life directly. Dirt under the nails, dirty knees from pulling weeds, and the smell of earth, decay, death, and life, altogether as an activity, how nice indeed. The birds come and go, eager to see what I am disrupting that may be a nice snack for the afternoon. The neighborhood cats, including our own, find neutral ground in the gardens if I am out there with them but the birds stay wary then, snagging worms as the cats take the lazy position. Watching and working with plants over years a relationship develops that pays one back so very much more than one gives. Sanctuary is never much more than a foot away from us; we need only take off our shoes for a minute or squat or sit down and touch the earth. Give her a good back rub! I always find that a direct shot of energy, to give the earth a loving interactive mixing, my hands and million-year-old dirt. Who doesn’t like a good massage? And I do mean it. This interaction gives energy to the one making the connection, enhancing the interaction with their own being, connecting to the earth, our home. Dancing has a similar but different effect. If we are free in the dancing, there is much energy to be gleaned and shared. Both are a regular spontaneous “practice” to this very day for me and somewhat essential to living well with a terminal condition.

Built, weeded, planted, mulched...

I am the practical sort. If something works, use it. If it doesn’t work, find what does work. Resisting life does not work so well. Yielding, listening, opening, this seems to work for me. The earth and life are so much older than I am. All I need to do is be attentive, these winds have been blowing a long time indeed. So it works to listen to what the birds are passing along, to weed after a good rain and to plant as it warms. All we need to know is revealed to us in being attentive to nature, to the patterns and simple grace of it all. What a gift, including a different painting to close the days unfolding every night! We are blessed to have such an avenue to understand the majesty of this all, with our own two hands, eyes, ears—a body capable of movement and a mind capable of understanding this majesty that is the human experience. If I am attentive, I am the experience, no longer separated by thinking of the experience as a narrative I am “starring” in. The starring role is a distortion or delusion, a false identification of thought, in which one imagines oneself as the “star.” The fact is that thought is the reporter at the tail end of the process of perception but over time this notion has become the dominant notion of mankind. We end up thinking we are “who we think we are” and so perception as a function fails to deliver an accurate picture of oneself. The function will do its job as it is designed to do. It will use an old image and validate this identity at every turn. We have to really want to understand this and look fearlessly and honestly, with a passion to understand if this is so or not.

I had to verify this by looking into myself and have found this to be the case. A distortion arises in the function of perception that allows identification as thought itself, as though we actually are “who we think we are.” Think on this for a moment, how can we be what we think we were yesterday or will be tomorrow? They are both guesses at best, or memories already distorted through imagery and locked into time of past and future. Not Here Now. When I am attentive there is only here and now as a full expression of life in its continual unfolding. These movements into time are observable as “slow” to the attentive state of being. The movement of this type of “identified” thought is understood to be bogged down in time. It is easy then, once we truly look for ourselves, to leave this type of thought to rest and remain attentive, remain here and now, present to each day as it unfolds like the lily. Here and Now is where living is, where relationship is. When we get caught up thinking we are who we think we are, or were, or will be, we disconnect from here and now, from life and the energy all around and through us.

May 1, 2013

Known by many names across the world, Bodark, hedge apple, osage orange (the “monkey brain” fruit), this wood is something else indeed. I have worked with many species in my days and this one is the most interesting and often the most challenging. Dense, hard, it dulls a saw’s edge in just a few pulls. It is also self-lubricous, meaning it has its own inherent oil content, to an extreme. This helps to preserve it over long periods of time and it’s often used for fence poles in farm fields. It does not rot for a long, long time, even while sitting in the dirt. Often used to make bows for bow and arrows, the strength and flexibility of Bodark is hard to rival. It reminds me of family, the many diverse strengths of Bodark.

My family put on a fundraiser for us after the surgery and all the treatment time, in early June of 2013. I have a hard time accepting help at times. I keep working on that, but I was resistant to this idea at first. I was repeating the conditioning to resist change at all costs. Humans are funny this way; I see it not only in myself but in others. Clearly, my family is trying to help me, and my sisters are incredibly skilled in this department. Still, I have to feel right about it and it felt like I was just taking, like the circle was not complete. I suggested I build a series of benches we could sell or auction off.

Giving and receiving is a circle, it works and feels better to me that way. I felt fine building. It helped in my recovery and regaining strength. From that point, I could leave my family alone to organize the details of the fundraiser. I was gaining so much from working with this incredible yellow wood, building a different style bench to meet what each slab had to say, and I had deadlines to meet to get these ready before the fundraiser. I left it up to others to whose hands they would fall.

May 25, 2013

Sure am glad I did not get glio“yuckoma,” I am having a blast with glioblastoma.

Inclusion

Quantum physics knows this answer, the separation we perceive as subject and object existing independently of each other is an illusion. We may resist this information in an effort to maintain an idea of ourselves as special or some notion like that but it does not change the fact of it. We are all in this together—inherently connected—and as we do include others in our life we see the truth of this on a practical level. Cooperation works much better than coercion, for example. With coercion we are perceiving others as existing separately and an exclusionary and user-y game is off and running. Image meeting image and neither image interested in anything but that illusory idea and its maintenance or defense. Again, this greatly limits the possibilities of what may occur.

With inclusion the interest is mutual and potential and possibility open up in many more ways, allowing for the flow of creative energy. It is practical to cooperate in a mutual exploration or project; practical to include oneself in the world one is. We seem to exclude ourselves only when we hold onto an idea of ourselves as existing separately. We then have something to defend, to be “right” about. What is more important than meeting one’s neighbor as oneself, today? We see the sun shines on all equally; if we look carefully we see in many places that inclusion is the actuality. With inclusion the possibilities open to us in a manner that exclusion prohibits. So, what is our interest in? Are we excluding ourselves or including ourselves in life and relationship?

Auction/Event – June 9, 2013

June 22, 2013

We leave Saturday for nine days on the west coast—a chance for Laurie, Alex, Zeke and me to travel and visit with Aaron and other friends in San Francisco. I planned this trip a couple months ago to ensure we would all have some time together this summer, as the kids are growing, which naturally means they are also growing apart in distances.

My headaches have been increasing over the last few weeks as well as general pain and soreness neurologically. I do not say this for sympathy but to speak about the facts of disease and mortality. It is such a taboo subject for many, to consider their own mortality, but as a parent if I do not have these conversations with my kids and wife about what is being felt in the body, it would be a selfish act to leave them unprepared emotionally. Communication is a bridge humans have in the toolbox that can be used to separate us or to bring us together.

I am opting to communicate about death and dying, to my family and to you all as well, because to me it is important that the subject of death is brought into the open more than it normally is. I have been on both sides, watching Becky go through a four-year battle with cancer and now as one with terminal cancer. In an hour or so, a reporter from the Cincinnati Enquirer will be here with his cameraman to continue the interviews we have been having for the last few months. He is a good guy, I like him, and once I interviewed him a bit. I trusted his intention to not be agenda-driven as much as wanting to talk about this subject that most of us hide from. I am also involved with something called “The Conversation Project” which is a national organization started by Ellen Goodman dedicated to promoting the conversations many do not have with their loved ones concerning their wishes to die at home, funeral arrangements, “Do not resuscitate” forms, and the like. My sister knows someone in the organization and asked me to write a story for them shortly after my surgery. The reporter from the Enquirer, John Faherty, was alerted to that, and so contacted me in January to see about writing a story. We have met several times since and will continue to do so.

Al Jazeera America (a new network opening in July here in the States) has now picked up the story and will be doing an interview with Ellen Goodman, myself and one other person in July when we return from California, all designed to promote awareness of the issue of open and honest communication about death and dying. So often people wait until it is too late to dive into this difficult topic and talk with their loved ones about their love for them and their wishes upon death. Though the process can be difficult and many tears are shed, it is far better to face the fears and tears and have the conversation than the alternative of leaving a grieving family to try and figure out what to do after a loved one has passed… I know Becky and I talked at length about her wishes long before I knew of “The Conversation Project” and I also know that those conversations aided me in not looking back with remorse at what I didn’t say to her while she was still alive. We said everything we had to say while she was alive, and so her passing, though difficult and painful, was not compounded by remorse or regret, by psychological suffering from unresolved content.

So, that said, talk to your loved ones soon about your or their wishes upon death—have a plan, don’t be selfish and afraid to speak about such issues when communication is the bridge we have that breaks fear apart and leaves two people relating to each other in an honest and open way rather than burying their head in the sand and hoping it will all go away somehow. Death does not go away, but fear and anxiety around death can.

Life is what happens. I say it all the time, and for good reason. No matter what we want or plan for, no matter our goals or dreams, hopes or fears, life is not those imaginations, life is what actually happens. I am a practical sort. In California, we had planned to visit Muir Woods and see the big trees, and we headed into the city to pick Aaron up on our way. When we were five miles or so away from where we planned to meet, Alex got a call from a Hawaiian phone number. Aaron was on the other end and told Alex that he had just been mugged and was on the corner of Broderick and California borrowing a stranger’s phone to call 911, and to call us. Of course, we are in the city and traffic on the weekend is not always so speedy, but we altered course to make our way as swiftly as possible to get to him. Block after block, light after light, the moments dragged on until we edged over the hill a block or two west of California Street and I saw the ambulance with lights on down on the corner. I knew Aaron was inside it and I couldn’t get out of the car fast enough as Laurie pulled over to the side. I jumped out and ran down to see my bloody boy smiling at me and giving me the thumbs up. He lost some tech things and his wallet, but escaped with his life and his attitude for life intact. Five staples in his head, a few difficult drives to pick up his other laptop, a temporary phone, etc., and we were chilling at the hotel for the evening. The big trees will be there, but today was not our day to see them. Life is what happens, not what we think will happen….

Looking or searching for inspiration is a fool’s errand; inspiration cannot be found or held, only observed as it rises and passes along.

Do you see the heron flying in the distance?

Your observation does not alter the bird’s flight, it includes you in it.

June 27, 2013

The sun shining on cathedral grove in Muir Woods.

July 9, 2013

I had my three month MRI today and admittedly had some concern going in as I have a persistent headache and occasional memory issues as well as fatigue. The MRI machine is one of the loudest and oddest experiences, if you have ever had one, and when it is an MRI of your head even more so. I settled in for a nice half hour meditation of the opposite of sensory deprivation and began to breathe slowly and deeply into my abdomen. I saw a thought of what it would be like to panic in an MRI, watched it roll on by and returned to the breath and the intensity of sound all around me. Whirrs, bangs and clicks in a odd rhythm of sorts are fascinating, but I am the curious type. Thirty five minutes or so and the pics were all taken. I headed over to meet Laurie at the oncologist’s office for the results. My oncologist walked in and gave us the news, much of which was very good. There appeared to be no recurrence at this time, though there were some flair images which could be tumor activity or could be radiation damage (necrosis). The oncologist and radiologist both looked and did not think it was cancerous, but it was not possible to know at that stage. Then my very honest oncologist gave me the honesty I was looking for.

Do I have brain cancer? Yes, I do.

Has it progressed? No, it has not.

Will it progress? Maybe.

Where does this leave me? Right where I am.

I can live with that!

The headaches can be lessened by steroids, but I just don’t like those too much, so if Tylenol can ease the headaches, then Tylenol it is. Again, I can live with that!

Alex, Aaron, Me, Laurie and Zeke in Muir Woods

July 24, 2013

Ten years ago this morning my best friend, wife, and mother of our three boys took her final breath and let go the body. Love you Becky, and thanks for all you taught us in your time here; rooted and strong, connected to the earth…

August 4, 2013

”Of an early death showing no sign, the cicada sings”

-Basho

My garden abloom with Morning glories and Black-eyed Susans

With the benches finished, I decided to make a semi-permanent pond.

September 9, 2013

Concrete base finished. Tile board going on walls for plaster finish. This pond will last for generations when I am done with it.

September 17, 2013

So I haven’t written much about glioblastoma lately because honestly I keep forgetting that it is part of my life... late spring and early summer pains and headaches have mostly ceased now and I am able to work more every day. Some days can be worse than others but most days I am whistling away and doing my work. Laurie made me a wonderful new play list for my iPod today so if you have been hearing me whistle the same dozen tunes for weeks now you can expect it to change up a bit.

The koi pond (my latest project) has taught me once again the value of waiting until things are clear, and then acting from that clarity. With thorough research into the materials and construction I am confident this pond may even outlive me now and I plan to be around for quite a while. I shall paint the plastered walls and floor of the pond this weekend and move the fish over next week to their new deluxe penthouse suite...

September 20, 2013

Just to be clear…

we ARE in outer space…

Ok, back to the regularly scheduled programming...

The “me” I think I am will always be an imagination of the “me” that I actually am. Re-runs are boring, life is so much more interesting than any idea I could have of myself.

Talk about freedom!

What limits us most are these ideas of who we think we are. It is at the root of every grudge held, every bitterness not forgiven—the idea of who we think we are. If we see these ideas for what they are—when doing the dishes, responding to a post or sitting in the garden preparing for winter’s wrath—we are no longer powerless to the suffering they induce. We are never apart from our thinking but we can come to see this thinking clearly if it is interesting to us and we have a passion to find out.

Have a great week discovering you are not who you think you are, and never will be.

October 18, 2013

“The shortest answer is doing.”

-George Herbert

Topcoat completed. A few days to cure before it is time to paint and be finished with pond building for the year.

Back to one pond...

October 25, 2013

Heard a wren this morning, who evidently has returned for the winter. Took a while to find him despite his piercing and beautiful song. He blends well into the browns and developing grays of the season. Wrens and nuthatches, welcome home.

Alex and Joe, Mt. Shasta 1992

November 9, 2013

Saturday morning dojo bench built. Copper pyramid back in place, ready for sitting

November 20, 2013 ~~one solar cycle since initial seizure~~

It was a day like many others. I got my tools together in the morning and headed off to work. I had torn up many sections of the ballroom floor at the Oxford Community Arts Center on Monday and there was a Thanksgiving wedding planned so I had to be quick to get it all repaired before angering a bride, and more importantly, the mother of the bride. I got the first coat of stain on the replacement red oak and headed down to Ace Hardware to pick up the glue that would be required for installing the patches. I could not find my way home from Ace and knew something was amiss.

So began the journey that ended up in brain surgery a few days later and a year’s worth of recovery since. I am writing today to thank everyone for their love and support over the past year. Laurie and the boys, my family and all the many friends both near and far who have kept us in their thoughts and prayers. Thank you all so much and here is to another fun year of love and growth.

November 23, 2013

I heard the sandhill cranes ten minutes ago and went out to see them on their warbling way through, and now it is snowing outside. Yes, it feels like November all right...

November 27, 2013

It was a beautiful drive south today toward West Chester. The many red-tailed hawks perched atop the light posts lent a real feel of dawning winter to the scenery as we made our way.

Laurie and I went today to get the MRI results from pictures I had taken last week. The news was not great, as there seems to be tumor re-formation in the same area as the original tumor. The neuro-oncology team is meeting tomorrow to review the film and will call me with their recommendation hopefully tomorrow afternoon. It is likely they will recommend surgery but we will know more tomorrow. Once we have all the information we will look to what options are there and whether they are sensible for me, or not. Keep a whistle in your heart for us, thanks…

November 28, 2013

No surgery recommended but more due to the difficulty of the location than anything else. I am going to meet with another oncologist hopefully next week, and if my tumor has the right marker look into a vaccine study that I may now qualify for since I have an extra initial to my diagnosis. GBM is now RGBM, as there is recurrence and this opens up some new possibilities. Will let you know next week if things work out that way.

December 31, 2013

Well, 2013 was an interesting year indeed, not only for me personally but for the world as a whole. I used to be of the mindset that we were likely to kill ourselves off due to ignorance and poor practices. Now I see change happening in the consciousness of mankind, and the advent of social media is a big factor in this change. We are all in this together folks, ring it in well and keep ringing! A wonderful orbit to us all!

January 30, 2014

“Life is a sexually transmitted terminal disease and we are all the better for being blessed enough to dance with life, as it dances with us.”

-JN

January 31, 2014

“What I am I am, and say not. Being is the great explainer.”

-Henry David Thoreau

February 24, 2014

”Be content with what you have, rejoice in the way things are. When you realize nothing is lacking, the whole world belongs to you.”

-Lao Tsu

March 16, 2014

The cardinals are singing their rain song this morning, better check the weather map. Good to hear them back in force.

March 22, 2014

“Intellect asks—Is it possible? Intelligence asks—is it appropriate?”

-Physicist Joseph Chilton Pierce

March 24, 2014

The pond is aspiring to greater heights.

April 7, 2014

Planning for everything with expectations of nothing is a fine rainy Monday activity...

April 14, 2014

So, I had an MRI last week to see what is happening under the hood. While I feel fine much of the time, there are also times of not feeling so hot at all. Laurie and I were looking at a potential move so it made sense to see how the tumor had progressed before making a major change in our lives, like moving would be.

Well, the results show the tumor has progressed since the last scan in October, from .5 cm and is now 2.5 cm. The seizure and surgery a year and a half ago happened when the tumor was 4.5 cm. No change in approach, surgery was not recommended last fall due to the location of the tumor and the risk associated with its removal. I have made it quite a long way without Western treatment options, further than many with my prognosis that do the full treatment, and I have had a blast living and enjoying the simplicity that life is always sharing with us. I will continue to have a blast living with glioblastoma for as long as I possibly can but wanted to update you all on where things stand. Carpe diem folks, carpe diem.

April 21, 2014

April 30, 2014

Just finished a FaceTime meeting with a college philosophy class at NKU who are studying death and dying this semester... good fun stuff, 20 year olds are not afraid to ask questions...

“The cure for boredom is curiosity. There is no cure for curiosity.”

-Dorothy Parker

May 1, 2014

A good week to finish what was started last fall. Little bit of plaster on top and then paint and pond will be operational again.

May 19, 2014

Keep an eye out for the extraordinary in the ordinary today.

May Day Reflections

May 22, 2014

Hello Iris...

May 23, 2014

Ocular migraines are like Alpine Valley ‘87 Grateful Dead concerts all over again, except this time the hallucinations are free. I have had eight or ten of these ocular migraines in the last six months, a disorienting experience at the least. They begin with flashing lights and then typically go to a heavy astigmatism, where I can see through the center of a kaleidoscopic prism. Twenty minutes or so and they wear off visually, though the body as a whole seems to feel the impact quite a while longer.

May 23, 2014

Friday project complete, the old man and the sea are ready for succulents...

May 24, 2014

Friends gathering...

June 5, 2014

This dance is interesting... some days things are foggy and other days clear, much like the nature reflected back to us in its ever-changing seasons. The last couple weeks have been up and down for me as far as the feeling in the body and the clarity of thinking. Some days it feels like the tumor is winning and other days as if it is receding and I am just doing my day, like normal. Today is such a day for me, clear and feeling physically strong. I may even play nine holes of golf with my friend Will Turbyne. I am blessed with such wonderful relationships, across the board. Thanks to all for being in my life in the manner that you are. Will and I have been working on a design I drew up almost a decade ago, a tile mosaic above the door to my garage. By that I mean I have been sitting while Will has been cutting the tile. In my sitting I have been re-carving the words in an old piece of Douglas fir I first routered into the wood back in 1994... pictures of both next week sometime...

June 9, 2014

Sneak peek of process...

“Joe, good to spend some time with you last night in Oxford under your new mosaic and your saying underneath. Words to live by...

Love you--Dan Neyer”

June 26, 2014

I sit now in an empty garage, with only thought for company. Time like this is essential for my well-being; to be alone with the mirror of thought and allow space for this movement to be seen for what it is: a conditioned mechanical movement or habit. Death is such a good friend, unraveling the complexity we surround ourselves with. Just as a snake sheds its skin so we must as well if we wish to remain flexible and able to adapt to the ongoing changes life delivers to our doorsteps.

What a fascinating thing it is, the utter simplicity that underlies all the complexity, drama, and surface details we surround our lives with. To feel oneself as that simplicity rather than caught in the extremities of thought is to know peace, not theoretically but in a visceral way, filling one’s days with what is actually needed rather than what is sought, be that seeking for peace or heaven or a fat pocketbook. You see, that is hell, to seek to be something different than what we actually are. The conflict will always manifest in some fashion. Heaven is the absence of this search that is based on comparison, a “value” taught to us by the systems we use, by the churches we go to, by the media who tell us what is of worth and what is to be ignored.

Having, or rather taking, space for ourselves is an act of love that benefits the world. Vision allows more to be seen than what shows on the surface. If you are on the tail of a wide truck you lose vision and subsequently power. Give yourself some time today, and every day, to see what puts us in hell and that the kingdom of heaven is indeed within, in the absence of the hell we put ourselves through.

Oh, I meant to write this letter to talk about Hospice, as we have made first contacts with the organization. I am slowing down more and more physically, and while I think there is a ways to go, one never really knows for certain, whether one has glioblastoma or no condition at all. For me the writing is much of the medicine I continue to take. I have an opportunity to be alone and let the words pour through me the same way the story of the trees once told me the story of the piece it would become. Thanks for letting me share it with you all.

“Knock on any door,” the Buddha said, “and the one opening it will suffer and face death.” This is the fact that is not to be escaped or we miss the simple joy of living itself. June has been such a month for me, the joy and the suffering.

June 28, 2014

Designing a garden for OCAC

The center circle of the garden

July 14, 2014

Coming out of another ocular migraine, depth perception seems to be coming back... what a trip!

July 18, 2014

“Dream as if you’ll live forever. Live as if you’ll die today.”

-James Dean

July 23, 2014

“The bluebird carries the sky on his back.”

-Henry David Thoreau

Yin Yang Shadow of Joe and Laurie

Many hands make for lighter work, especially with stones... thanks all!

July 27, 2014

Good morning!

“What tools do we need to use? Only one. We’ve all heard of it, yet we use it very seldom. It’s called attention.”

-Charlotte Joko Beck

Yes, and good evening indeed.

When we open to possibility, possibility opens to us...

September 23, 2014

22 months ago today I had this wild dream that someone stuck certs all over my head, and the needles, whistles, beeps of that day turned into brain surgery two days later, with a diagnosis of Glioblastoma Multiforme, the world’s deadliest and most aggressive form of brain cancer...

Well, most of you know the story since then. I took the diagnosis and fell into the acceptance of the condition in order to not make things worse through my own resistance to the facts of life, dove into radiation and chemo until it was clear that these methods were not going to be my way through, and took myself off the medical model, content to use my own training and understanding, to be attentive to what the body needed each day and only that day.

I wrote and wrote about it, immersing into the incredible support of so many, here and elsewhere. A great support it has been indeed, thanks to all of you.

A few weeks ago now, things were not looking so good for me at all. The headaches were very intense and growing worse by the day, leg strength had diminished to the point it was tough to walk the stairs without the handrail.

I was tired and ready to let go of the fight. Aaron came home a week early from his internship as I was not sure I would make it two weeks at that point. After Aaron came home, the last vestiges of my own “will” I released, and accepted that death was imminent. I let go, letting the stream carry me on its back, drifting into uncertainty and acceptance. All the boys were home with Laurie and me, and I could just let go now. Funny thing is, I did not die. Days turned into weeks and here I still sat, typing away...

Dying or facing death directly has been a great teacher for me, to help me understand fear, openness, uncertainty, and acceptance. It appears I am having too much fun dying to stop now, and other things appear to be more interesting, far more interesting, at this point.

My posts about perception and its limits, about attentiveness as a state of being, are far more interesting than fading into the sunset, for me anyway. So, I keep watching the flower unfold with no expectations, content to not rush anything at all, just to look and see what unfolds each day...

With Laurie-Nightingale’s and Hospice’s help, the pain was managed and I can continue to investigate what is possible in this world when we open our mind to all possibilities. I still have GBM and the issues involved with this, but I am still typing and whistling away through my days. Have a wonderful day, friends…

Impermanence is the fact we see throughout the cosmos—change and interaction—it is literally everywhere. When we reduce the picture a bit, the trees change their colors and it does not frighten us; we accept it as part of change. Our hair grows and it does not frighten us. Change is the fact of what is. Since the Big Bang itself, particles swirl and collide, coalesce eventually into more and more diverse and complex forms—fascinating stuff, really.

If you think of a wave, what happens as the wave collapses onto the shore? The wave was water and is water, nothing is really lost at all. There is this interaction of forces but the state, the field, remains the same cohesive whole of water. Nothing is lost and yet all is washed new in the interaction. It seems we are such a wave as well; we arise and fall from what we are never really separate from, beyond the appearance of separation.

So, what is it about impermanence that seems to frighten humanity into a state of clinging and seeking? We have all sorts of systems and religions built by traditions around the world to try to “handle” this fear, this uncertainty of the unknown. We add as much knowing as we can to feel the security, the comfort of belief. A final resting place, an Eternal Soul, Atman, God, the Enlightened Soul, Reincarnation, Nirvana, Paradise; on and on there are many ideas that have arisen.

When I look to myself, I see what belief is constituted of: an idea taken in or taught and turned into belief, as though it is absolutely true. As all belief, this idea of “eternal” needs constant validation or it falls apart. So in looking, I had to ask, “How do I know what I was taught to believe is true?” I see in looking attentively that I do not know this at all, beyond believing it to be so. So, I keep looking to understand more, I am not satisfied with belief; belief is still limited by the old point of view.

Do these beliefs help shed understanding on impermanence or do they seek to deny the fact of impermanence, to deny the fact of death itself?

This most incredible fact, impermanence, gives such richness to life, allowing for the diversity of both pain and joy, growth and decay. The fullness of the experience of living, of life arises due to this beautiful fact of impermanence and death.

Do we need a belief of something that lives forever in order to enjoy this day, our relationships, our very existence? It seems to me life is right before us now, not locked in a belief of any kind. We need only to open to life and it opens to us, just as possibility opens to us as we open to it.

What prevents openness? Certainty of belief, most often. The proverbial apple of good and evil, right and wrong, the point of view handed down for millenia now that has resulted in all the divisions and wars we see in this world. The need to be right (certainty) and have another be wrong is built into this old point of view and armies have gathered around these ideas for most of the recorded history of humanity.

The issue with this point of view (perception as a process) is that it cannot be present or attentive to this day. It must, by the nature and limit of its function, use the past imagery and belief in order to “perceive” the world it wants to see again, so it sees a copy based in the past. We cannot see new today with the eyes of the past as lenses. We will only see what we already believe. From this old point of view, impermanence and death become something to fear and we set about to build walls and beliefs around them, to keep death and impermanence “out there”and ourselves safely tucked away over “here.”

Look closely and perhaps you will understand as well. It is not so easy to comprehend since we were all taught these things from a very young age and we surely appear to be permanent and existing independently. It seems to me this idea of ourself as permanent or eternal beyond death is where the issues come in. Look to every religious war and this seems to be the case.

We fight over these ideas of being right and another being wrong, our God is right and yours is wrong. I go to heaven and you go to hell, etc.

This point of view has underscored the suffering of this world for a long time now and continues to this day. Fear and division is the net result of this point of view and we use all sorts of means to avoid this fear; but avoidance does not end fear at all.

We have to be very attentive and consistent in attempting to understand ourselves or this old point of view will validate the certainty of the existing belief. This means we have to be really honest with ourselves as well, when this certainty arises in our looking to understand. If we do look with an intention to understand—just looking to understand—surely this certainty of what we think we “know” will arise. The brain is deeply grooved to think this way. Literally thousands of years in the making, we have to be very attentive or the process will draw the same picture again. And we will believe it again. Certainty is a clue we may be deceiving ourselves through belief. How certain are we that what we believe is actually true? And how open are we to the fact that perception as a process is limited and makes mistakes? If we trust memory and recall to be perfect, we will never understand the limits to the process of perception. Identity arises as a distortion in the process and will remain in place, validating within a limited, known circle if we don’t understand.

What we do not know (impermanence, the unknown) is much more interesting than what we already know (certainty, belief), and yet this same richness of impermanence causes great fear and suffering in the world and in people. The fear arises when we seek to escape it with beliefs that are caught in illusionary time and in division.

What may be needed is an entirely different point of view. A point of view that is attentive to these movements into time and understands the limits they impose on our life, in our relationships. Freedom from fear comes in being attentive to what actually is.

November 23, 2014

Life is a series of adjustments. The last reduction of the steroids (down to 2 mg) did not fare as well as the first few adjustments had gone over the last couple months. I am hoping that settling at 3 mg (once as high as 8 mg) finds that balance between side effects and pain relief, but again one has to adjust to what life actually is, not just what we want it to be. So, as the pain returned and increased (after 8-10 days at 2 mg) I adjusted the dosage back to this midpoint (3mg) to see if a balance can be found here for now.

Phat Boy Joe... the swelling effect of steroids

We are closing in on turning another year over and, honestly, I did not think I would see 2015.

During 2014, things were quickly going downhill many times. Yet, here I am typing again this morning. One never really knows what each day will bring with it, but one can be open and present to its unfolding. What will this day bring?

Do we move with the breeze or stand headlong into it with resistance?

Action and reaction work in a linear fashion, one direction only. This is very effective in many ways but rather limiting outside of this scope. The World and I do not exist in a vacuum. Since the Big Bang, we have traveled and interacted as space dust and this continues today. Science knows and shows this to be the case. We are all essentially the same ‘thing’ at every level we look.

I started a “meditation” a while back as part of my morning stretching/sitting practice. The “route” that appeared for me was blowing up as the Big Bang—from unified solidity or “wholeness” to infinite particle--in order to watch how this all happens, through the process and laws of interaction. There are laws and names physics uses and my choice of names is slightly different, but make sense to me in a real-world way. I sit my butt down and settle in, gaining density and mass in the rooting on the zafu cushion, sinking into depth and silence.

From nothing, everything is.

Movement is now in all directions, seemingly simultaneous. The limits imposed by action and reaction, by perception as a function, the linear mode of expression (one direction), have not come into play here in the explosion into particularity. The forces of interaction--a coalescing or attractive force of the particles and a gradual definition of this attraction of particle to particle held together by a force of cohesion—attraction, definition, cohesion. Now we are getting somewhere. Maybe a planet, maybe a micro-organism, maybe a person; the outer manifestations of creative energy vary widely, but slowly these forces of interaction bring potential into play, and a seemingly limitless potential at that. Diversity is the direct result of interaction and with increasing diversity the interactive potential increases as well. Seems to me this is less limiting than a one direction vision or movement as action and reaction represent. Attentiveness now serves as the cohesion; holding this understanding together in an ongoing yet flexible state of being. Where perception as a function is limited by the past and imagery, a state of attentiveness is not limited this way—attentiveness is present to what is actually happening, to oneself and to the world. We are whole and part, at the same time.

We are all in this life and world together, interacting. We can isolate by thinking of ourselves as separate, but science is clear on this matter of matter. We are all the same stuff. With interaction, all possibilities open in a unique way that allows for creative energy to flow naturally, unforced, in all directions simultaneously. All are included, just as we see on the quantum level. We are all the same stardust, interacting, and in this interaction creation occurs. Separation, division into subject and object is a practical element that is helpful for navigating this world of matter. There is no factual separation. I am the world, I am that I am.

Up from the cushion and into the day.

December 31, 2014

In the book, The Colossus of Maroussi, Henry Miller writes,

”I know what the greatest cure is: it is to give up, to relinquish, surrender, so that our little hearts may beat in unison with the great heart of the world.”

January 12, 2015

In her autobiography, Daybreak, Joan Baez writes,

”You don’t get to choose how you’re going to die, or when. You only get to choose how you’re going to live. Now.”

See you later this year... I’m having too much fun dying to stop now…

-joe

Joe Neyer is a master builder. From seeing the big picture and the potential that it contains, down to the smallest of detail, Joe Neyer built from integrity and skill, and an incredible awareness of space. This is witnessed not only in the structures and additions built in and around our college town, but also within the strong community relationships that he cultivated and the large network he built with his writing. Woven throughout it all is Joe’s service to others.

Always inspiring, Joe would greet everyone with a genuine smile. His response to the usual greeting, “Have a good day” was always “Might as well” because always given the choice, Joe chose the good day. In his most challenging times, he was reaching out to others. His attention to all matters, be it others with Glioblastoma Multiforme and their caregivers to general questions of carpentry and life, was as impeccable as his craftsmanship.

Joseph Campbell has said, “A hero is someone who has given his or herself to something bigger than oneself.” Joseph Neyer has become a hero to all of us, sharing the story of his journey, step by step, and in doing so, bringing us the message of courage, strength, hope and love; the message that Too Much Fun Dying to Stop Now is living life well.

Live it well. Might as well.

— Laurie Traveline Neyer, October 6, 2016

We've chosen to highlight the word unforced in italics throughout this book to represent the importance of that particular word to Joe as a way to describe his life approach and day-to-day acceptance of his world.