Archive for April 2014


April 15, 2014

This story speaks of spirit, of eternity. I am not affiliated with any religion. I have no guarantees of some future reward. In this world, I have one truth and one DNA. Here, in this world, I can choose to live or surrender. In my experience by not surrendering I found a certain peace.

When you ask where is God, and why won’t he fix human suffering? I would ask you the same question my great grandparents would ask their generation – where are you? Are you living your fear filled life, ignoring everything and waiting until someone comes along to fix it for you or are you doing your part too? Are you getting up every day and expending incredible amounts of energy trying to make your lies come true or are you effortlessly living your truth?

Through researching my disease I found that the first pieces of me came to the US in the late 1600s and the last immigrant in our family came here about 1832. Some were of the first in Massachusetts and I’m not here to repeat that story. Others fled peasant/farmer bullying in Germany, in a place where I understand nearly 20,000 people would emigrate and leave an entire region and its capital nearly abandoned in less than a generation. Genetically, other pieces of me fought in the Civil War, WWI, Korea, Vietnam. My great grandparents went to France after WWI with the Salvation Army and their story of Christian faith would intersect in my life at a unique time. I struggled, in the context of this disease to reconcile this back and forth taking, the conquest. Because I was being conquered I know what it is like. I am being slowly, and painfully, killed by my own body. Literally eaten live from the inside out. This is what I learned

It has been hard to write because it tells the story of how to walk with what seems to be a cruel God. If you arrive at a judgment of what is happening to me shows the depths of some God’s indifference to suffering or some awful punishment then you would be making the wrong judgment. In reality, it is more the opposite, showing the resiliency of life itself and the danger of passing judgments on others without knowing the whole picture. It’s a reminder that when you make judgments, it takes smaller and smaller pieces of the truth to convince you things are what you believe them to be but in reality they are not. Thus deceived you take wrong actions that lead to problems not growth. It is a story of the intangible rewards achieved by rejecting the deception that says you are limited or helpless under any circumstance. It is a story that warns against the use of ever smaller pieces of the truth to paint false pictures. It is a story that dares you to live your truth, no matter what the consequences.



The wall of death

If I ever forget his name I will always remember his face. If he were walking in the mall or down the street, he looked just like any normal late 30ish person. But he could not walk down the street. He could not walk at all.

Sitting in a wheelchair, I had just foot dragged myself into the dining room and into a portal of living death. Silent, staring, medicated. The ones with eyes that still looked around shifted away when we made contact. Why did everyone look like they slept in a bus? I found out later they only get full showers once per week. Before they shower, an attendant will make them stand up and look them up and down to make sure there are no bedsores.

The room was very crowded with maybe 15 to 18 people in it. There were two or three long rectangular tables and a few other smaller ones scattered around. All the women were at one table and the men at another. But for the most part they didn’t talk. It’s like they were pre-arranged somehow in rows. I had no idea why the women and men didn’t mix. I was not the youngest one there but like everyone else in that room, I thought I was the only one who stood out like a sore thumb. I don’t think anyone really believes they are really there, in that dining room. They look at one another. Stare at one another. From my vantage point it’s impossible to tell who is in a state of panic and a state of peace. Sometimes the eyes give it away.

It’s not just the eyes actually it’s those 43 muscles in your face that can slice emotions into infinitely small pieces and reflect them back at the world. More emotional pieces than you can ever have words for reflected in tiny facial movements each one different from the last. All day every day we move about, changing position, responding to an intellectual or emotion or some stimulus. Pieces upon pieces of experience of varying amplitude, assigned a value, ranked and ordered and put in place.

And through a combination of fears, DNA, circumstances and desires your consciousness begins to assemble a picture of the world and you in it. What are these anchors that you unconsciously empower to place bonds upon your spirit? Fears become empowered guards, restricting your interaction in the world. The willful ignorance that makes an external life oh so comfortable also enables the great deceptions that make your spirit scream. Those screams, that torture in the mind are empowered fear echoes. You can disempower them only by abandoning your willful ignorance, dropping your fears, and bringing your spirit INTO this world, not just in your head. This happens when you drop the fear and live your truth as best you possibly can.

Dropping the fear, rolling into the dining room, I took a heavy swing at the wall of death with some heartfelt hellos to my cellmates. The wall doesn’t crack. The heartfelt hello shatters into a mist and just disappears. The echo that does come back is in the form of a thousand preschool teachers dressed as aides, cooks, nurses, whatever. They sing my hello back as if I’m 5 years old and on the brink of helplessness.

OK. Try again. I rolled over to the table where two younger people were sitting. It was a smaller wall of death. Hit it again. Hello! On my left was a man who I acknowledged but he just looked away. On my right was Robert, I think was his name. If I were to guess, it was Huntington’s that put him here. From what I knew, it was very likely that he was every bit as aware, capable, intelligent, feeling, and everything everyone else is except for a body that worked. They will say he isn’t cognitively aware, that he isn’t really there. The aides will speak to him in their best pre-school voice. Visitors will stare at him. He will stare back.

I made it a point to acknowledge him. I showed him my Samsung Galaxy pad, offered to let him try it. It was awkward because he couldn’t. His hands wouldn’t work. But for some reason, there wasn’t a wall of death with Robert.

In the US there is an undercurrent of bigotry. It is because we know competition is fierce and has two sides. Winners and losers. And here, in the US, being in a losing position can be a really, really scary place to be. We love to jeer our losers. We love to throw garbage. It’s a national pastime. Being a loser is, well, not comfortable. So begins the compromise, and the corruption, of saving bad ideas from their destiny at the earliest possible convenience. Because who wants to be a loser when you can pretend to be a winner? Willful ignorance is now your partner, your co-pilot. You are now best friends with your biggest enemy.

Losing, really, is nothing but the exposure of some deceit. Somehow we have associated losing with shame. When did the simple act of admitting a previous deception, no matter how deeply held, become shameful? Was our Civil Rights movement shameful or was it the deception that preceded it more shameful, if there is such a thing anyway? So what I thought this way but it was really that way. And being brave enough to admit it. In that you don’t do it again. The celebration of losing comes in lessons learned. Lessons learned are often the funniest moments in life. It’s where we learn to not be so easily fooled and where we begin to develop the complexity of thought that makes us human. Unless of course you’re too proud to go there.

Ok so compromise is comfortable. Ignorance is bliss. But here is where reality comes in. This national shame of ours, this absolute one-sided bigotry that keeps making the rounds and the resulting judgments get passed down. They get passed down hard, fast, and very brutally to the marginalized and powerless. Like Robert.

In Robert’s world, in the winter time radiant heaters keep the rooms consistently warm and consistently stale. His thin, economical bedsheet is stretched over a vinylish/rubberish mattress cover. But the mattress cover isn’t just for what you’re thinking. Medications often cause intense night sweats. Literally showers as the body flushes itself. In this stale air, it drips down onto the thin, non-absorbent sheet and pools on top of the mattress cover. It will stay there, cold and probing, evaporating, until you can roll over, move, get up, or get away. I woke to the stale air and soaking cold of sweat As painful as it is, I can at least move. Robert can’t. He will stay there until someone comes. What kind of spirit will enter his room that day to help or not help he can never tell. Some will be nice, some far from it. But he can only be one person, no matter what happens to him. In this light how can anyone not be thankful?

The trip to the nursing home began innocently enough. A step in the wrong place, a twist in the knee, releasing blood and fluid into the joint with such pressure that standing was impossible. Walking more than a few feet at a time was vicious. i would not be able to climb stair i would have to crawl up them. Each small movement would bring excruciating pain.

At the hospital, I was DNRd upon admittance. As the disease progressed I did not want to be a living blob, dependent on someone to show me mercy. At 6’3″ I now weighed 139lb, down from 205lb just 4 years ago. I had turned 50 years old a few weeks earlier. Why was I here? I had heard it all. Why don’t you shoot yourself? Why do you care to live? Life evidently isn’t worth living to some unless they have everything the TV tells them they need, I will show those people why, I tell myself, not knowing how I ever could get through such thick ignorance. The purple Do Not Resuscitate tag mocked me.

With compromised immune system, ongoing clotting therapy, and a number of other potential complications the Drs and I decided not to draw fluid off of my knee. The needle would leave a hole in a hospital environment with superbugs that my compromised immune system would have a hard time fighting off. Death by MRSA wasn’t very appealing to me. Instead I will wait it out, semi-immobilized on a hospital bed. Now what would become of the visions and how can this possibly be overcome? Were the visions just more forms of deceit?

As my knee slowly healed I would not be able to stay in the hospital but could not go home either. Going home to a four level hose with plenty of stairs wasn’t an option. I would be introduced to a new kind of hell, the nursing home.

There, mostly kind immigrants with basic to advanced nursing training tended to the elderly and the infirm. They would dutifully bring medications from the pharmacy even though in each and every case over the time I spent there I would have to correct the staff who brought the wrong medications. Not once, multiple times, 2X a day, over several days. Mostly related to the very expensive immune suppressants I was taking. Was it the cost or what I won’t know, The pharmacy computer was wrong, the pharmacist incompetent or lazy or both. With way more fire than the average 139lb patient I exploded one day. I had enough of the warehouse, enough of the pre-school teachers, enough of the incompetence of the Pharmacist, and enough of the wall of death. I was leaving. Leaving Robert to his stale room, the pre-school teachers, the incompetent Pharmacist, and God knows who else. To this day it haunts me. Don’t tell me he is ok, that he’s getting good care, that things are fine. I know things are not fine I also know that in reality, it is about the best that our money is buying us in today’s health care system. Sue the bastards? No. All that does is make a poor person lower middle class at best, their lawyers rich, impose absurd overkill steps to prevent any conceivable slipup on the part of any medical person who will ever possibly see you in the future, and still deliver the lowest possible comfort level money can buy. Sorry, but that’s a fact. We have added useless overlap upon useless overlap adding expense on top of expense, driving the cost up for everyone.

And so it was on Jan 1st 2013 I insisted that they were discharging me or I was walking out. left that place and would never go back to anywhere like it again.

The Vision Quest
Through this process I was able to start to come to terms with my challenges. Here is where death anxiety became manageable. This set the stage for the many insights revealed to be played out in front of my eyes in real time many months later. At some point in the history of human societal evolution laws that prohibit these processes will seem draconian and strange. But these processes are not simplistic. They do not produce made for television sound bites. They cannot be hyped. To walk this path is to take a one way trip that can never be undone. It is a path of living death, an oasis in the desert. In my life only death will complete this process.

Before I walked this path, I completed my health directives. All treatments had failed. I instructed hospitals to place Do Not Resuscitate tags on me the moment I were to be admitted. In this way, no medical intervention would take to place for any life threatening event. I instructed that in the event I cannot get up and fend for myself they were to let me starve to death, if necessary, to bring about an ending. There would be no feeding tubes, no life support, no airways opened. I had resolved to not be a burden any one person or institution no matter what burden that placed on me until the time of my death.

That was my pledge and my truth and my directives reflect it to this day. At this stage, my hands and feet were well over halfway destroyed, my eyesight dimming. Vicious and searing pain bearing down on me from all angles every hour of the day and night. I threw up constantly and would go for days with very little food. The disease was expanding its scope of attack, changing, evolving, plotting new destructive strategies that I needed to stay ahead of. There was nowhere to go, nowhere to hide, and I needed clarity. As I put it in an email:

“When Mayo failed I knew this was going to be a very rocky, one way trip. With no end date but knowing an irreversible path of long term pain, debilitation and suffering will be part of my everyday life I had to prepare. Death anxiety was building, there would be no escape from it. There will be no Golden years of retirement, no life spent with family and friends. I would be torn away from everyone and everything I ever cared for. Lupus is a very isolating disease. Immune suppressants, irregular intervals of extreme pain, near constant nausea.. So without saying a whole lot more I went through a process over several months that could be summed up by describing it as a very intense ringing of a spiritual bell and listening for an echo. And from that process death anxiety began to melt away.”

The plants, with their non-toxic, non-fatal, and potent compounds would give me clarity. These visions were powerful, indelible, wordless with unspeakable clarity. I can only represent how it was explained to me, communicated as best that I can. During that process there were three lessons. These lessons came to me as were a combination of intense dreams containing a strong emotional component.

The Rock
To understand the Rock you must understand the point of death. The point of death, experienced in very slow motion. Now imagine this Rock sitting in a stream. The stream is cold all year around because it flows from a spring underground where the Earth keeps the temperature consistently cool. Consistent and unchanging temperature, never wavering The Rock is smaller than a basketball, sitting in the sandy bed of the stream. Part of the Rock is submerged in the sand, part is in the stream, part of it is out of the water. That which is submerged in the sand is dead, the part in the water your spirit, and the part out of the water is your life.

The water in the stream flows continuously. It is the spirit of Life. As the blanket of death descends about the body it is as if the part of the Rock sticking out of the stream and the part that is buried under the sand all gather in the place where the spirit flows. In that flowing steady water. Here there is a stillness unlike anything ever experienced and life is expressed by nothing more than a very simple heartbeat and slow, shallow breaths. In this still point, where mere threads hold the spirit to the body, life and death co-exist with one another. They become equals as one no longer has any power over the other. It is a place of supreme equality. It is a place where your living DNA will sit with the spirit of Death. Whether this is comfortable or uncomfortable experience will directly tie to who you are and how you chose to lead your life.

Today, right now, any number of living things are experiencing this boundary condition. Now imagine this Rock as yourself. As the blanket of death descends, imagine that rather than gathering in the spirit of life, the part of the Rock out of the water and the part of the Rock in the sand repel one another. They cannot gather in the spirit of life because they are too terrified. They are in a place where death cannot comprehend spirit and yet spirit sees no distinction between the two. And spirit hold all the cards.

In a place where spirit is shown to be the ultimate authority and the accomplishments of life reduced to mere trinkets some people will be absolutely terrified. Those people will claw, cling, cry, scream, beg, bargain, all to no avail. They will associate themselves with the topmost part of the rock. They will be afraid to gather in the spirit. They will fear communing with death. They will sit on top of the rock. Cold, fearful, clingy, and alone. Alone not because there are no people around, alone because there is no spirit of life to comfort them. In this state they will begin to leave this world, without confidence and fearful.

As death descends, and the spirit cannot hide or run any longer, the body reveals the illusions the spirit was blinded by while on this journey in this place. Illusions such as societal ranking and stacking, that one spirit is less valuable than another, that things done to others are really done to yourself, that the miracle of life is far greater than anything we can explain with the best of our sciences. That the power of one life is the same power that flows in each of us. Earthly illusions are replaced by the equivalency of a body returning to the spirit that brought it forth. The abused and downtrodden will not find abuse here, they will not be rejected, they will not be dismissed. They are not scum here, they are equal to all, to every one person and every one thing. The abusers and enslavers, the takers, those that associate themselves with their accomplishments and egos, their power and prestige, the seven deadly sins. What happens to them? The opposite. In their lives their wealth brought them insulation. It brought them attention, in some cases awe, in some cases every imaginable pleasure. It brought them access to the elite of society. They will go to a place of equivalency, where that cleaning person or that maid or that slave or that prostitute are looked upon with equal gaze. In this place how will they feel? For the poor who have felt starvation and hunger, been close to death, watch their countries spend on weapons while citizens live in open sewers and filth. These people have faced fears the rich never will. If the ultimate balance and judgment of life were the overcoming your limits and seeing the equivalency in life that you will experience in death, where would you rank yourself on that scale?

So what comes past it? As a person who has spent many hours of my life in the position of the Rock I still do not know. I do know this. What spirits we channel into this world we do by choice. There is a scientific concept called quantum entanglement. It has been shown that entangled particles can communicate between themselves at speeds many many times greater than the speed of light. Could this mechanism communicate with us? With me? Entangled particles of atoms forming molecules of thought? . This spirit of life arranges molecules into many forms. Molecules that are made into people, slugs, slime, birds, beasts, and that neighbor you hate so much. Can a person “tune” in or out the spirit of life? To actually, willfully, entangle particles of thought with various pieces of the rainbow that makes up the spirit of life? To tune in to the complete rainbow that makes up the spirit of life all that is required is to fearlessly walk your truth. But you have to walk it without mercy. In who you are, and what you do, unafraid. An everlasting spirit, one no longer deceived. One that is breaking through. When people ask me where is the other side I say what other side? You’re in it now. Right now. Learning and growing. No matter what your condition. This is the lesson of the Crow.
The Crow
“I was very very sick one night, pain all over, every move was agony, I’m nauseous and working my way back and forth from the bathroom to my bed. Literally felt like I was dying, pain was even making breathing difficult. So I got back in bed and this vision of sort came. I’ll call it a vision because there was an emotional component to it that dreams don’t carry. And in this vision I felt like a broken bird, with wings not working, and a very strong spirit came by to see what was wrong. Then it left to join others like it, strong free spirits. And at first I felt abandonment at the edge of death, but then I realized that for me to be as strong and free, in order to join those others I must endure and even thrive no matter what the challenge. I see adversity as just as you said, in that is a way god strengthens spirits. And it looks ugly from the outside looking in, from the inside looking out it’s been really really inspirational. That’s the best way I can explain it”
If lupus was predictable like a sentence, at the time of my diagnosis it would read something like this. You will be slowly stripped of your hands and feet. They will be crushed. Bit by bit, piece by piece they will dissolve in front of your eyes. Your nerves will burn with each molecule removed. Broken, dying bones will rub against each other as you walk. Disconnected from the rest of your hand fingers will flop awkwardly. Organs will be similarly but silently attacked. You will feel physical pain so great you will gladly blind yourself to escape it. This pain will perch forever at your doorstep. Blindness will knock louder and louder at your door. Pain relief will be denied. You will be made as close to helpless as humanly possible. You will experience pain so great and so deep you will go days without eating rather than face walking to the kitchen. You will be stripped from life itself, thrown down and beaten, left for dead. No amount of physical pain or emotional panic will stop this from happening. You will be tortured to death and there is nothing you can do to stop it. If all my pain were contained in a 5 gallon bucket of water, each x-ray you see would represent no more than one drop of water in that bucket. So don’t tell me about your pain, I don’t care to hear it.
It’s not that i’m not empathetic to what you are experiencing. quite the opposite. I do care. But I also know that I have no control over what your attitude toward your predicament is. So to the extent you ask me how your pain can be used to liberate your spirit I can help. To the extent that you ask me to carry your pain and your fears, sorry my pack is full. My first reaction to people who want to wallow in a pain trough is to tell them to go read about a topic called “learned helplessness” Then pick up a book like “Learned Optimism” by Seligman. When you are ready to move on, then we can talk about your pain.
On the other side is my spirit. The constant observer. The one who says “we’ll see about that”. Sitting deep in the middle of all this, watching. Reflecting. Trying to make sense of this. Defending and attacking in its own way. Absorbing, denying, defying, countering, bringing the fight forward. The observer who dares to mock and defy the horror inflicted on the body. The one that refuses to move from its mountain. The power inherent in all life, everywhere. As the body dies so does your ego, replaced with this immovable power. It will watch as you are denied shelter, denied mercy. It will watch, silently, as you come to know the difference between mortal pain and eternal suffering. You will feel the weight of the Earth upon you. All manner of obstacles will be placed in your way. You will be cold, hungry, and alone. You will starve. You will know desolation and despair. You will know true helplessness. You will beg for death and even that will be denied.
And as you arrive at a point where you are surrounded by pain, immersed in the loss of each and every thing in your life, it is the voice that says “So what?” It is the small voice of defiance. It is the voice of no surrender but not its timbre. It is the never ending spirit of life calling you to defy once again the things trying to destroy you. To rise and stand in spite of all. To the end. To the last breath. In whatever way you can. It is the recognition that the complaints, the quitting, the giving up is only the body. All these things, these complaints, they are nothing but the cheeping of baby birds in the nest. The crow tells you that .your problems are just hunger pains, hunger for you to walk your truth. Those baby birds will grow up and fly away. Rise about your problems and your pain. They are just baby birds. . Rising above these things, emerging from the nest, walking your truth, knowing the difference between determination and resoluteness, that is the lesson of the buffalo.
The Buffalo
In my vision I saw a buffalo. It was dying, mortally wounded. But it was victorious in its fight. It had gored its opponent, in human form, so decisively that around the horns of the buffalo were the remains of the necklaces, talismans, and medicine bags that its opponent wore around its neck for protection. I remember seeing a beating heart in a broken and dying body, the last evidence of life itself.

From that vision I would build my spirit wall. I contracted to have a buffalo hide brain tanned and two drums made from the hide. I also picked up a skull, still slightly stinky from decay. I also bought peace pipes from this same person. Finally, from the CMP a WWII era rebuilt Garand on a Springfield receiver.
As a wall hanging, the hide is hung tail down, the rifle at the top. Underneath the rifle is the skull, now adorned with victory chains. The drums and pipes are hung on the wall in random places.

The symbolism of the wall is that it represents my truth in this world. What came to me was that it was time for me to leave one type of fight and pick up another. The rifle is hung up for now, ready to be picked up if needed, but for now at rest. This spiritual fight that would take me to a very difficult place. In that place there will be many enemies who would try to crush me. I would face pain, silence, anger, rage, discrimination, be taken to the edge of death, know utter desolation and walk with hopelessness. All manners of deceit and deception would try to convince me that I do not exist, that resistance means nothing, that all is lost, that efforts mean nothing and I should resign myself to the fact that I have lost. Combating these things would not require a rifle, but something else.

The drums symbolize the never ending heartbeat of life, the pipes the mystical journey. . The hide represents that I will be given no more protection than nature offers. Around thehorns now hang the symbols of its victory that eternal life triumphs against the temporary troubles of today. These symbols I’ve gathered from various places. They represent the sacrifices of the people who came before me, the spirits of those here who sustain me, and command that as a human being I make today a little better than yesterday.

The chains that hang are not Mardis Gras beads. They were all in some way handmade, creatively designed and assembled. They are not cheap but not expensive either. If you were allowed to freely take one of these chains and wear it around your neck for inspiration, with the expectation being that if you take one you will bring back ten more as proof of your own personal victories, would you pick it up? Can you live that honestly, according to your spirit rather than expectations? If you can, you will find those victories. If you can’t, you will probably need to invent them all for yourself.

In my vision, because of what the buffalo did, a great tree rose from the ground. The blood and gore of its battle fed the tree, but I would not see how large it grew, nor what its leaves looked like, or what species. I would only see the trunk rising.
It is really easy to stay in an insular world, until they day comes that you become so lost in it you are one of those people at the long table, not like Robert. Because in spite of his outward appearance, Robert was very much alive. In our world he meant very little but in the spirit world he was equal to any other. Because the spirit world does not relate well to falsehoods and social judgments that cast inferiority on people like Robert. In the spirit world, Robert is more valuable than the fear filled executive or politician. The reson for that is Robert is sick, but he knows who he is. He doesn’t need a cocktail party persona. Then another for work, another for his parents, another for his inlaws, another for his doctors, another for his whoever. One person. As one person he can be trusted, as 10 people I would not know which one of him I could trust. You may not be comfortale around him but he is more truthful than you.


White Cloud
White Cloud, MI. The county seat of Newaygo county, in the heart of the White River watershed.. The general area is described in a 1975 Michigan Department of Natural Resources report as a place where “The White River watershed contains roughly 300,000 acres of land. Of this total, 245,000 acres are in private ownership and the remainder is in federal and state ownership. The federal acreage (roughly 54,000 acres) is all within the boundaries of the Manistee National Forest.”

A more recent report would say “Land use is largely dependent on local soil conditions. Where soils are more productive, as in the DeLong Creek area, farming is intensive and permanent. There are productive dairy farms in this area with good crops of hay, corn and wheat being major crops. Most of the drainage has poor sandy soils and the farms are small subsistence and part-time farms with many tenant farmers and absentee owners. Abandonment of farms is a major trend and the abandoned land is in a very depleted condition. Old farmland usually lies idle for a long time and is subject to moderate or severe erosion depending on the degree of slope and exposure to wind.”

Anyone who says if you can make it in New York you can make it anywhere has never been to White Cloud. To me, if you can make it in White Cloud you can make it anywhere. In a city, the sheer diversity of people, different races, education, perspective, immigrants and locals form a whirlwind of energy that will sweep up even those with the slightest of motivation to go do something to earn some kind of money.

In the US, towns like White Cloud are more common than you think. Small, rural communities where land is cheap, water plentiful, and investment lacking. Most of them are within 50 miles of mid sized cities and suburbs. With all the job losses in the US due to globalization and regulation, in many ways it could not have come at a better time. In retrospect, we may be glad that during the time of unprecedented human population growth the pollution that supports this growth is happening in other countries, not ours. I would learn in White Cloud that the grocery bags that cannot recycled here are shipped to China where they are evidently burned. I’m not so sure the people of Beijing appreciate this, or even know that we ship our garbage to them to be burned in their land where regulations come a distant second to official corruption. I’m not so sure many people in the US appreciate the regulation that exists somewhere that makes it expensive to burn those bags here.

Lupus came into my life sometime around the US Civil war. The first born children of both of my grandmother’s first born children would contract lupus. Genetically speaking, the eggs that would grow into those children who would birth those people who would contract lupus developed in my grandmother’s body while she was a fetus in the womb. Did they pass down a trauma from generations ago that would resurface again, in another generation, in another time? I often wonder. My Grandmother’s mother was born in 1864, Civil War years, in Indiana. In less than 10 years, 7 years after the Civil War, the country would be taken from a fragile peace and the continual social fallout of reconstruction to the first Great Depression. She would die young, when my Grandmother was only six.
The story of my grandfather’s family on that side is similar but starkly different in approach. Pieces of their roots trace back to the earliest settlers back to the late 1600s Massachusetts. They were all early American settlers of European origin who would strike out on their own adventure, into previously inhabited Indian territory in the Ohio valley.
By 1832, around the time treaty of Wyandott most clearly stated the land would no longer be shared between the newcomers and the natives, it was opened to more immigrants. . This treaty paved the way for Indiana to become the 4th largest state in the Union and marked the official but temporary truth of our intentions. It’s a historical and present day truth that when people are allowed to take from those who are defenseless, the taking never quits. It just goes on and on because there is no real penalty. And if you are living a life of lies, you can easily make room for one more, right?. This is because you choose to live a life where it is very easy to rationalize away your humanity for the benefit of your stomach. Don’t believe me just look around.
But there was something different about that set of my great grandparents. It was during this part of this process that I found myself exactly opposite them in experience yet identical in outlook. Much like the anti-dna. In other ways the other end of a magnetic monopole just delayed in time. Viewed in opposite, from the other side of lupus.
To understand what I mean by that you first have to understand who led them in their endeavors. The story is important enough that it’s time for a brief intermission.
You’ve seen the red kettles at Christmas time. Those bells. I have a story to tell, one which you probably never heard. It’s the story of an Englishwoman given a title and a mission in a time when women just didn’t do that sort of thing. Especially when it comes to religion. This Englishwoman came to America, tossed aside her critics, led her civilian troops literally into battle, scooped up a genuine US Army Distinguished Service medal and she wasn’t even a citizen of the US at the time.
Remember that Rock? Remember that place on top of the Rock, where the fearful huddle all alone as death approaches? That really, really scary place. That is the place where the Salvationists focused their efforts. Their mission was to step in and ease the fear of those stuck on top of the Rock. Especially as death descended in the cruel trenches of WWI France
One other point. Remember their time – children of the Civil War growing up with all the tales, friends missing fathers, fathers missing limbs, cities burnt down. For some of them their real life point of view was that God had laid his wrath down on their country. They saw the aftereffects firsthand. Others thought it was simply a profound demonstration of the ability of Mankind to be blinded by his own deceptions. I any case, no matter what the thought, for these people how much time do you think they spent listening to “nonsense”?
Evangeline Booth got it in her head, or laid on her heart, that the boys on the front line were being sent as cannon fodder. Because they were. And because of that there will be a lot of death, a lot of dying, a lot of very frightened people on that battlefield. She was right. Alone even with everyone around. Alone on top of that Rock. She knew the regular Army didn’t care much about what happened to people stuck out there. But Evangeline cared. Service to others was her truth and she walked it. Where suffering had burned away my fears she would rise a cross in front of her to dispel hers. And walk her truth right onto the battlefield. Their source of their faith was clearly God and the instrument they would wield to do God’s work was…..the donut.
Evangeline Booth, from the introduction to The war Romance of the Salvation Army
“Salvation Army teaching and practice is: Choose your purpose, then set your face as flint toward that purpose, permitting no enemy that can oppose, and no sacrifice that can be asked, to turn you from it”
“When the Empress of Ireland went down with a hundred and thirty Salvation army officers on board, one hundred and nine officers were drowned, and not one body that was picked up had on a life-belt. The few survivors told how Salvationists, finding there were not enough life-preservers for all, took off their own belts and strapped them upon even strong men, saying, “I can die better than you can,” and from the deck of that sinking boat thy flung their battle-cry around the world- Others!”
“Man! Sometimes I think God has given us special eyesight with which to look upon him. We look through the exterior, look through the dark, objectionable coating collected upon the downward travel of misspent years, through the artificial veneer of empty seeming-through to the man.
He that was made after God’s image
He that is greater than firmaments, greater than suns, greater than worlds.
Man, for whom worlds were created, for whom Heavens were canopied, for whom suns were set ablaze. He in whose being there gleams that immortal spark we call the soul. And when this war came, it was natural for us to look to the man – the man under the shabby clothes, enlisting in the great armies of freedom; the man going down the street under the spick and span uniform; the man behind the gun, standing in the jaws of death hurling back world autocracy; the man, the son of liberty, discharging his obligations to them that are bound; the man, each of them, although so young, who when the fates of the world swung in the balances proved to be the man of the hour; the man, each of them, fighting not only for today but tomorrow, and deciding the world’s future; the man who gladly died that freedom not be dead; the man dear to a hundred million throbbing hearts, the man God loved so much that to save him He gave his only Son to the unparalleled sacrifice of Calvary, with its measureless ocean of torment heaving up against His Heart in one foaming, wrathful, omnipotent surge.
Wherein the price? What constitutes the cost, when the question is THE MAN? ”
The Salvation army arrived in France before the American army did. Gen. Pershing seemed uneasy at first, but in that uniquely American way he seemed to know well enough when to get out of the way of innovation. And General Pershing let them walk their truth, right next to the troops, right up on the front lines. He took a chance, and they delivered.
It’s that walk of faith. The willingness to walk a scary path precisely because that path uncovers a gracefulness that empowers even the most timid of spirits. All it requires on your side is the truth.
Reading the story of these people, who braved serious and substantial danger doing nothing but caring for others, I was struck. You see, sometimes to understand what something is you have to understand what it is not. Peering at something from the extreme opposite end. Carrying what undoubtedly was the same type of faith. Just in different worlds, time shifted. I cannot adequately tell their story but Evangeline’s book is a free e-book, very short, and an incredible read.
Looking at their experience through the eyes of my own I saw a common theme between us. And that would be to get to the truth you can’t be afraid of the sting.
The sting of truth

Sometimes truth stings like a bee, sometimes like a hornet. I see a lot of people today identifying themselves by their view of their place in some social construct. People whose spirits are tied so tightly to their social construct that when anything goes wrong or gets put slightly out of place they are tormented by it. A rising up of torment like you find in a bullied child. A torment that makes their very spirits recoil in horror at the chains of life, so much so they can’t stay in it.

Another benefit of walking your truth. I rarely ever anymore feel the sting of truth. Instead I watch deceptions fall. Any pain is just the result of tearing deceptions from the spirit. Backwards to you maybe but completely normal to the anti-dna in me. Because faith is just that – it’s about empowerment. Empowerment that comes from knowing nobody can stop you but you.

So it is in White Cloud, where I’m in the eye of the storm, walking my truth that the spirit of life is stronger than the lies of death,. I’m walking it in the most improbable places, against the odds, because I know my hand is now all in. My final bets have been laid down and I will walk my truth right through it and watch the lies and deceptions that say life is a zero sum game fall in front of me. And so far it is working.

Yes it has been difficult. But as the winter of 2014 yields to spring I walked out and saw muddy puddles drying into topsoil. The clovers are coming up everywhere, turning sand to mud, then the mud to soil. In time. The spirit of life wants to burst out, we just have to create the right conditions. And the right conditions are the ones centered not in your imagination, but in the truth. Because the truth is I still have plenty of sand, and lots more deceptions to sort out.

As the disease gets worse, the spirit of life just gets stronger. It will eventually become so strong my body can’t contain it anymore. And that is how I will live until my last breath. In an indestructible truth.

The beginning – rise here or die here

An email arrived, asking how i was doing. My reply was written some time after arriving in White Cloud. Parts of it follow, revised for clarity. “…i’ll answer as a lupus patient because none of this makes any sense to anyone but me. so here goes. as things are progressing I’m feeling it now really working on major joints like knees and hips. like my hands, none can be replaced or fixed. no knee or hip replacements are possible. ok, so that sets stage. go back maybe 10 weeks or so ago, same knee joint gives out. completely. went from walking to being pinned to the floor in 3 hours. I could not move. I could not crawl up stairs to get water to take medicines. it would have taken a few shots of morphine to get me off the floor. so I call dr. same dilemma, and come hell or high water i was not going back to nursing home. I say give me narcotics, they say go to hospital which would have kept me 2 days and shipped me to a nursing home…, take mountain of prednisone because that’s all I got to fight inflammation. eat mounds of crappy tramadol, advil, whatever I can get my hands on because pain was very nasty. when I say nasty it was somewhere beyond hanoi prison camp but stopped just short of spanish inquisition type pain. within 4 hours or so I had taken so much prednisone my retinal membranes started leaking fluid like crazy and separated my retina in new places while re-filling and expanding the already scarred area. I knew my eyes would take a heavy hit but I had no choice. I had 911 ready on my phone,,,just had to hit send. told myself if you want to go bad enough, bite chunk off your lip because unless you do that or your leg turns purple you’re just going to shut up and take it. ( pain, pain, pain, get up to breathe, get beaten down 2X. this is lupus. it stops short of killing you, but not by much. (at least it doesn’t feel like you’re far away). you have to hold on hard, be super strong and not waver one inch otherwise it seems you’ll just get blown away. it is a point of honor now. that no matter how much it hurts, no giving stopping…no quitting. but now I need much more help with the pain. it is a lot to suck up. and I’m to the point where i have to buffer it with opiates.”
You’re doing what?
Before you say “he must be faking” I have a story. It will tell you a little about who I am. So I’m maybe 3 years old, playing outside. I get locked out of the porch by other kids. HaHaHa very funny. I didn’t cry to mommy, I backed up and ran my outstretched hand straight through the glass and screen of the storm door, reached in and unlocked it, opened the door, climbed on my tricycle and rode around dripping blood from my cut up hand all over the floor of the porch. Locked door conquered. The blood on the floor was my trophy and I was proud of it.

One quirk you will see more often in small towns than large ones is the tendency for some people to lean toward zero sum thinking. Here’s an example. Person X sees the world as comprised of a finite amount of treasures. In small towns, things move slow and it seems that nothing changes sometimes and its easy to get comfortable with that. Then there’s Person Y. Person Y sees the world as containing a vast amount of treasure, it’s just locked up somewhere, daring them to find it. Invariably, when Person Y finds a treasure Person X gets mad and wants to take it. Even though X could have done it themselves, that fact that Y did it first is enough to drive them to sabotage. Person X is the type who makes a big deal out of 5% of the problem by hogging up 95% of the discourse. Person Y is the opposite. There are lots of People Y here, but they are too busy looking for their next treasure to waste their time listening to someone’s ranting. Especially when they always rant about no more than 5% of the problem anyway. Shut up already. In small towns you can say shut up already and everybody gets it. So to the people X who try to come in my life I say read the rules, and if you don’t get it don’t come back. Ever. Because you waste my time, steal my peace, distract me from something important, and I’m the one on a timeline likely much shorter than yours anyway.

The natives who originally inhabited this place had a way to deal with Person X kind of thinking. In their eye life was just one giant spirit quest combined with a walk of faith. Sort of like I’m doing now. In their society, the person who found the greatest treasure and laid it at the feet of the tribe was honored. They did not live to accumulate physical treasures but spiritual ones. And a very true fact is the North American continent is so bountiful that they really didn’t need to advance their science and technology to fend for themselves.

But it would be my own pseudo-science and technology that would be needed to reverse a most curious phenomenon. On this 81 acre property for the longest time nothing would grow. That is, nothing that wasn’t already growing here would grow. And when I say nothing I mean it. DOT grade grass seed, radishes(yes, even radishes), raspberries, trillium, yellow clover, the list goes on. All planted and all dead, except for what’s left of Shirley’s garden.

Michigan Dept. of Natural Resources 212-121
Status of the Fishery Resource Report
Page 4
The White Cloud Dam was built with a bottom draw structure when reconstruction took place in 1990. The bottom draw structure was operating during water temperature collections conducted in this survey. To better determine the effects of the dam and bottom draw structure
on water temperatures in the White River, water temperatures in the impoundment were collected at 1:00 pm on August 9, 1996. Water temperatures in the impoundment (near the di
scharge) ranged from 72.3 F at the surface to 64.9F at the bottom (Figure 9). At the same time, water temperatures upstream of the impoundment were 61.0 F and water temperatures downstream of the impoundment were 70.2 F. The bottom draw structure had little effect at moderating increased water temperatures from water discharged through the White Cloud Dam.
De Mol (2009) provides detailed information regarding nutrient loading in the White River Watershed.

Overall, the watershed is receiving increased phosphorous and nitrogen loading resulting from
increased development. Both agriculture and residential development is causing increased nutrient levels in the watershed. Sub-watersheds with the highest concern for nutrient loading include Robinson Creek for residential development in Robinson Lake; Black Creek, Skeel Creek, Cushman Creek and Brayton Creek for agricultural runoff; the upper portion of the North Branch for residential development on McLaren Lake, Pierson Drain near White Lake for agricultural runoff; and the White Lake area for residential runoff.

Land Cover and Use
The White River Watershed was heavily logged during the mid-to-late 1800s. Historical photographs of this general area showed that few trees were left standing after logging occurred. The logs were transported to White Lake using the stream channels which resulted in severe degradation of habitat for aquatic life. Historical and current logging may presently be affecting in-stream wood habitat in the watershed. Prior to European settlement in the 1800s, the White River Watershed was 96% forested with the remaining area composed of lakes, rivers and wetlands (Table 4). In 2001, the watershed was 66% forested with about 2.5% composed of lakes, rivers and wetlands. About 18% of the land was used for agriculture and 3% was urbanized (this includes all roads). Most of the agricultural lands were found in the middle and lower portions of the watershed (Figure10). About 11% of the land was covered in herbaceous open land that includes abandoned farm land. De Mol (2009) found that since 1978 the upper portion of the watershed had converted some crop land to open fields and forest. In the middle and lower portions of the watershed, more residential and specialty crop land had developed. About 23% of the watershed is contained within the Manistee National Forest and managed for the protection
of woodland and wildlife.

Well, the author of this report sure hit the nail on the head. Heavily logged. If you’ve ever grown up around sand, you know that rain falling on a high, sandy hill with steep edges is going to do one thing. Erode them. Which strips them. Because whatever grew underneath of those trees grew in about 6inches of topsoil plus general forest debris. With no canopy to protect the topsoil from driving rain, and no more roots to hold it together the forest grew back in somewhat of a free-for-all. Only this time the soils were more acidic, more depleted. NPK and Lime won’t fix it alone. Micronutrients get stripped out of sand quickly and they are critical for many plants to grow properly. They get put in the soil mostly by animals. With nothing much for the animals to eat, it will be a long time before they get back in. So we’re adding a micronutrient mix plus root fungus to any npk/pH adjustments. To put it in the forest we will simply use water soluble fertilizers and gradually reapply nutrients with sprinklers and pumps. The forest fertilizations will start, with luck and help, in spring of 2014. Being in the watershed, we will need to do it slowly to prevent excess nutrient runoff. It will take a number of years, likely two to three if it works at all, before the forest soils will be ready.

When I was young I used to get intense dreams about spinning tops that never seemed to end. Very much like the kind that you wrap a string around or spin with your fingers. These tops would appear in my dreams, each vibrating at a specific frequency. That frequency I felt through my entire body. Some tops were comfortable, some tops were terribly uncomfortable. It all depended on the vibration it was putting out as it spun. But the portion that made it a nightmare for me was not the vibration when they were spinning, it was the vibrations they made as they lost energy, spun erratically, the vibrations spilling out in waves as the top slowed and finally tumbled. These vibrations were tied, in my dreams, to every cell in my body. When the tops spun out of control, I would too. The mildly comforting vibration would turn to a jumble of chaos leading to panic. As the tumbling top would run out of energy, it would disappear and another would take its place. And it would go on and on, as if I were being tuned by remote control. This frequency good, this one bad, this is stability, this is edging to chaos, the finest of changes in vibration would mark the transition that would start the top tumbling.

Add severe pain into the world of the spinning tops and you will begin to understand the door that leads to suffering. Because in that world I would find a pain so intense, so at odds with every tolerable vibration of life, that the very act of existing was very nearly impossible. There I kick and scream for relief that does not come. A never ending nightmare of tumbling tops and every imaginable flavor of pain combined with the visual deterioration of my body. From burning neuropathy to whole body pain that makes every move a new lesson in agony. Suffering is an inescapable place of circular doors where each one opens into the same place.

In suffering, I would only find relief in the plants. We really need to the the breaks off of research. This isn’t about Cheech and Chong, or Pineapple Express, or Zoolander, or whatever else. It’s not about taxes or revenue. It’s about where are the highly beneficial compounds contained in the plant and how can we separate them from the others that are not so helpful. Look at my xrays and listen to my words because I’m telling you it helps. I’m also telling you as someone with an engineering degree that it isn’t harmless. I will tell you some strains are disturbing to me and I avoid them. I will say if I had access to the one, two, or three compounds that help and get rid of the ones that try to fry your short term memory that would make me just as happy. But because we don’t research it and over the counter is a reality generations away, I can’t wait for you. I just can’t.
The crow manifest

Remember the bird in the vision was a crow. I was walking into the woods and along the path was a crow. It was injured. As I moved toward it, it got scared and panicked. My intentions were good, to help, but it did not know this. It was so busy being a crow that as I moved close to it tried to fly away. I sensed its panic because I knew that same panic. I have lived it many times. But it could not get away from its pain. It was the broken bird. From my experience I knew it was communing with the same spirit that I do in its final moments.

I first thought “I” could pull the rifle off my shoulder and put it out of its “misery”. Then I was told both I and misery were human creations, not spiritual ones. How did I know what its suffering was? What if its final moments were actually quite beautiful, and assuming it is in misery I would deny it the experience of its last moments on earth. Instead of its last moments being one of great perception its last moments were spent in the rise of panic. Because way behind that panic, after it rises and falls away, there comes a peace. And after the peace the world is opened up. And as the world is opened up an understanding comes. But the FEAR and the panic in those previous moments keep that beautiful experience away. If I would have shot the bird, it never would have experienced what it was meant to experience. It was not suffering, it was just sick. When I came back, it was gone.

And so it was shown to me that what was happening to me was not cruel at all. In the human sense maybe, in the spiritual sense it’s normal.

A year has passed. A year of writing was lost to a software glitch. Another baby bird because
I realized if I were walking my truth I could resurrect those words in better form than before. If I were to describe myself today it would be someone who spends their time on things way bigger than themselves. Today the spirit of life is way, way bigger than me. And every day I am up to see the sunrise, knowing a day will come when that won’t happen anymore. I can’t explain, convey, communicate or exchange in any way through words the connectedness and peace I feel. The worst of storms are just ripples to me now. The worst of troubles no more dangerous to me than those cheeping baby birds,

To get to this point in my life I had to accept a lot of pain. A lot. The best I can describe it is to say I was pulled into an opposite world, one completely free of mercy. In some respects a perfect vacuum, devoid of humanity and grace. Part of that due to disease, the other part on purpose. In that opposite world, immersed in pain and true suffering of every imaginable kind there was nothing left but the spirit of life. This is an important point. Sometimes to learn what something is you have to know what it is not. If you want to know the power of the spirit of life then take a walk, even a small one, without mercy.

In White Cloud, I would push the concepts of pain and no mercy to the breaking point. Or at least as close I as could to getting there. Each time as I did s, each time as things became difficult I simply ended up growing stronger, more faithful and genuinely optimistic. Seriously.

Because here I can’t be fooled by imaginary success. Here, sand is sand, topsoil is topsoil, and nothing but hard work and honest feedback will ever make anything different. Plants will live or they will not. If they don’t live then I’m clearly harboring some deception about what it is about a particular life form that prevents it from thriving. Here, it is up to me to sort out my own deceptions, not the job of the plants. Because I don’t waste time on imaginary successes my very limited time is spent as wisely as possible.

After coming here, and finally coming to terms with being here, it turns out in many respects the visions were correct. Those crippling pains and emotional voids really were just the “cheep cheep cheep” of baby birds. Growing pains of a different kind. That unbending buffalo spirit would rise and push me through the pain of each day. That spirit of no compromise, call it out, face the truth and walk it. It was tough, I got tougher. As pain turned to suffering I would indeed learn the difference between determination and resoluteness.

The future

Today my world is in a place of peace, love, justice, and no mercy. Peace not because of lack of confrontation but peace because confrontation is directed at uncovering the lies that keep the spirit of life from flowing through me, or the forest, or my interests.. The love is tough love because I don’t care about your ego or mine or any other lie that you carry. I don’t care about your hurts, they are yours and yours alone. They are your creations, products of your choices not mine. You are the one who nurtures them and carries them and lets them interfere with your peace, not me. Love is not about carrying the burdens for someone who should not be, but chooses to, carry them in the first place. Justice here is one that empowers everyone and enslaves none. A justice that ensures you will only be free to walk your truth, not your lies. Be who you are, unashamed, empowered, walking your truth. Mercy here is only reserved for people who are genuinely unaware they have done something to screw up the peace, love, and justice part. For those who come here with their ingrained willful ignorance, and expect me to walk their lies with my time they get no mercy. None. Because the job of the truth is to take power away from lies. It is time we let the truth do its job – without mercy.

What I really want, someday, is to tell you I’m not disabled anymore. I have a patent I’m working for a mobility device. I’d like to sell it and use it to fund a non-profit that builds technology assisted, layout appropriate housing for people with severe mobility issues. With climate control devices people like Robert can use to at least turn on a fan. Semi-automated stove/sinks for cooking. Lots of things. The possibilities are endless, realistically reached, in some cases sorely needed. The funny thing about all of these things the disabled need today, they will be commonplace in 30 years. Maybe helping people like Robert out would be a nice place to get started. In any case, that’s what I’m doing with my “disability” and my “blindness”; what are you doing with your life?

I don’t put my name to this because if you want to find a similar story with just slightly different words just go find another lupus patient.  My story is not unique, or even original.  It is life’s story, told through my eyes.  If you’re passing through White Cloud, and get bored, want to talk about this kind of stuff you never know, maybe I’ll bump into you in the donut shop.

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