Entry for September 23, 2006
The Poison within the Poison
In 1998-1999, the flood of information about the chemicals in the carpet and the horrific effects on the body washed over my world. Everything that had come before was swept away in the putrid overload. I was swimming desperately to stay afloat. The only thing I found to cling to in the deluge was the federal court process and the novel I was working on. I hung on to my word processor like a life jacket while computer after computer was hacked and destroyed. One of the things that was back-pocketed was the envelope of talcum powder from Nigeria. Without FBI follow-up, I skittered off this bizarre incident into the infinitely crazy world of litigation. It was in a dimension I had never imagined existed. It was like some crazy chess game with a dizzying list of rules moderating every thought of movement. It was a place where you could not talk, even to correct mistakes so blatant that flashed like neon bozo nose on the face of what was happening. My lawyer, post stroke, screwed up. My transcripts were stolen. My EEOC file disappeared. On two occasions my girlfriend and I woke up to a dog being tortured to death outside our bedroom window at midnight. The apartment was broken into to.
My mind settled into a narcotic like puddle where everything blended like pudding mix and oil.
How exactly were these events related?
I was getting sicker.
Was it the anthrax or the chemicals?
Was it the electricity?
The circuits in my girl friends house were clearly crossed.
The house was hot-boxed and under some kind of surveillance.
I kept thinking about what I had learned on the sugar cane plantations, back when there were sugarcane plantations. The Russian Extraterrestrial (or so they said) and electrical genius Nikolai Tesla had been hired by the Hawaiian Royalty to electrify Hawaii. The royal palace was electrified before the White House in the United States. The literacy rate was also higher than it was in our own country. That was just prior to the overthrow of the monarchy.
While Tesla was there, the plantations also hired him. You can see the transformers he designed for the plantations workers homes in plantation museums there. Usually without explanation.
The second and third generations’ accounts of the plantation workers are that the houses of the time were wired up in a crude reward/punishment mode. The positive effects were sexual. The negative effects were aggressive and painful. The spine would bristle under extreme electrical exposure. We experienced that.
My eight year relationship broke apart under the pressure.
The anthrax issue became just a puzzle piece.
Entry for September 22, 2006,
Poison Choices2 No Ask, No Tell
The second red flag ran chills up my spine.
I think it was the grammar.
There was a clause in the termination agreement that said in part: "Employee shall make no reference, allusion, or allegation of any wrongdoing against employer in any public media or privately."
Under executive order and my sworn oath as a deputized federal marshal my obligation to report all illegal activities supersedes all other considerations, especially when there is a possibility of a clear and present danger. It is clear how present that possibility of danger is. Failure to report is punishable by at least a year in jail and a 10,000 dollar fine At least it was the last time I checked. That’s a hefty time in the can and quite a chunk of change for a spineless, morally reprobated act like participating in a safety cover-up at a clinic that services children, families and disabled people. But not hefty enough.
After the Enron scandal, I am of the opinion that public corruption should be viewed as a form of domestic terrorism. At the government level, that’s treason of the highest kind. That is betraying office and public trust. The reforms recommended by George W. Bush via his executively ordered committee on this issue triples fines and punishments for this kind of thing, as it should. It should be law instead of ideal.
If anyone at that clinic is directly responsible for any of this, from the cutting of corners on construction to the covering up of dangerous circumstances arising from construction. They should be held accountable for their actions and people should be compensated for the medical problems and life style changes that have happened as a result.
Two of my friends and coworkers have died since that time. Maybe more. I am only recently well enough to consider these things in perspective. What has happened since? I don’t know.
I have done my best to document what happened.
It may very well be up to someone else to update facts.
Friday September 22, 2006
Entry for September 21, 2006
The Poison within the Poison
In 1998-1999, the flood of information about the chemicals in the carpet and the horrific effects on the body washed over my world. Everything that had come before was swept away in the putrid overload. I was swimming desperately to stay afloat. The only thing I found to cling to in the deluge was the federal court process and the novel I was working on. I hung on to my word processor like a life jacket while computer after computer was hacked and destroyed. One of the things that was back-pocketed was the envelope of talcum powder from Nigeria. Without FBI follow-up, I skittered off this bizarre incident into the infinitely crazy world of litigation. It was in a dimension I had never imagined existed. It was like some crazy chess game with a dizzying list of rules moderating every thought of movement. It was a place where you could not talk, even to correct mistakes so blatant that flashed like neon bozo nose on the face of what was happening. My lawyer, post stroke, screwed up. My transcripts were stolen. My EEOC file disappeared. On two occasions my girlfriend and I woke up to a dog being tortured to death outside our bedroom window at midnight. The apartment was broken into to.
My mind settled into a narcotic like puddle where everything blended like pudding mix and oil.
How exactly were these events related?
I was getting sicker.
Was it the anthrax or the chemicals?
Was it the electricity?
The circuits in my girl friends house were clearly crossed.
The house was hot-boxed and under some kind of surveillance.
I kept thinking about what I had learned on the sugar cane plantations, back when there were sugarcane plantations. The Russian Extraterrestrial (or so they said) and electrical genius Nikolai Tesla had been hired by the Hawaiian Royalty to electrify Hawaii. The royal palace was electrified before the White House in the United States. The literacy rate was also higher than it was in our own country. That was just prior to the overthrow of the monarchy.
While Tesla was there, the plantations also hired him. You can see the transformers he designed for the plantations workers homes in plantation museums there. Usually without explanation.
The second and third generations’ accounts of the plantation workers are that the houses of the time were wired up in a crude reward/punishment mode. The positive effects were sexual. The negative effects were aggressive and painful. The spine would bristle under extreme electrical exposure. We experienced that.
My eight year relationship broke apart under the pressure.
The anthrax issue became just a puzzle piece.
Entry for September 22, 2006,
Poison Choices2 No Ask, No Tell
The second red flag ran chills up my spine.
I think it was the grammar.
There was a clause in the termination agreement that said in part: "Employee shall make no reference, allusion, or allegation of any wrongdoing against employer in any public media or privately."
Under executive order and my sworn oath as a deputized federal marshal my obligation to report all illegal activities supersedes all other considerations, especially when there is a possibility of a clear and present danger. It is clear how present that possibility of danger is. Failure to report is punishable by at least a year in jail and a 10,000 dollar fine At least it was the last time I checked. That’s a hefty time in the can and quite a chunk of change for a spineless, morally reprobated act like participating in a safety cover-up at a clinic that services children, families and disabled people. But not hefty enough.
After the Enron scandal, I am of the opinion that public corruption should be viewed as a form of domestic terrorism. At the government level, that’s treason of the highest kind. That is betraying office and public trust. The reforms recommended by George W. Bush via his executively ordered committee on this issue triples fines and punishments for this kind of thing, as it should. It should be law instead of ideal.
If anyone at that clinic is directly responsible for any of this, from the cutting of corners on construction to the covering up of dangerous circumstances arising from construction. They should be held accountable for their actions and people should be compensated for the medical problems and life style changes that have happened as a result.
Two of my friends and coworkers have died since that time. Maybe more. I am only recently well enough to consider these things in perspective. What has happened since? I don’t know.
I have done my best to document what happened.
It may very well be up to someone else to update facts.
Friday September 22, 2006
Entry for September 21, 2006
Poison Choices Con't
I know this is no fun.
It will be.
I promise.
I feel an obligation to my clients and the people I worked with to give a full accounting of what happened before I left Hawaii. I want them to know about how I left and what I found out before I went. For all I know the material I left behind with friends got distributed and people have added their own information to mine.
Maybe were all still in the dark, literally, with the impact of these chemicals on the eyes.
It is my deepest hope that the survivors are being taken care of.
There was heavy litigation around the Bigelow Nu Broadlock carpet adhesive. As a result, information on the product line, its legality and its impact on the human body has been severely limited on the internet to prevent further litigation.
The mediator read the data sheet on the main chemicals to me over the phone. I followed up. I don't remember what exactly I found out. I do know that the product was made by a major chemical company like Du Pont. I also know they sold their stock in the product after it became a liability. Someone else evidently could make a profit from it.
I left in the middle of a tsunami after a hurricane after an earathquake after a flood.
Things were crazy. Like many people forced to leave Hawaii I had to leave everything behind. That's why the thrift stores are so good there. It's disaster packing for a lot of people. And it usually happens around the ten year point of entry. In territorial law (made invalid by statehood in 1949) it was the law that after ten years in Hawaii, all protection of law stopped. And the newcomer was game for slaughter. The sexual assualts that happened after that point are legendary. The horror stories are many. Is this ten year point arbitrary or a linage remainder or territorial law? I can't tell you anymore than that.
At anyrate, thats what happened.
Sick and without income I lost everything I had.
As far as the chemicals and the clinic go, It’s an interesting comment on the priorities that rule these things.
It’s the same old story.
It’s money before human safety.
The E Pluribus Unum blues. Out of the many, the one, ultimately.
It’s the selfish little pig-glut called profit.
Thursday September 21, 2006 - 10:55am (EDT)
I know this is no fun.
It will be.
I promise.
I feel an obligation to my clients and the people I worked with to give a full accounting of what happened before I left Hawaii. I want them to know about how I left and what I found out before I went. For all I know the material I left behind with friends got distributed and people have added their own information to mine.
Maybe were all still in the dark, literally, with the impact of these chemicals on the eyes.
It is my deepest hope that the survivors are being taken care of.
There was heavy litigation around the Bigelow Nu Broadlock carpet adhesive. As a result, information on the product line, its legality and its impact on the human body has been severely limited on the internet to prevent further litigation.
The mediator read the data sheet on the main chemicals to me over the phone. I followed up. I don't remember what exactly I found out. I do know that the product was made by a major chemical company like Du Pont. I also know they sold their stock in the product after it became a liability. Someone else evidently could make a profit from it.
I left in the middle of a tsunami after a hurricane after an earathquake after a flood.
Things were crazy. Like many people forced to leave Hawaii I had to leave everything behind. That's why the thrift stores are so good there. It's disaster packing for a lot of people. And it usually happens around the ten year point of entry. In territorial law (made invalid by statehood in 1949) it was the law that after ten years in Hawaii, all protection of law stopped. And the newcomer was game for slaughter. The sexual assualts that happened after that point are legendary. The horror stories are many. Is this ten year point arbitrary or a linage remainder or territorial law? I can't tell you anymore than that.
At anyrate, thats what happened.
Sick and without income I lost everything I had.
As far as the chemicals and the clinic go, It’s an interesting comment on the priorities that rule these things.
It’s the same old story.
It’s money before human safety.
The E Pluribus Unum blues. Out of the many, the one, ultimately.
It’s the selfish little pig-glut called profit.
Thursday September 21, 2006 - 10:55am (EDT)
Entry for September 20, 2006
A Choice of Poisons3
It takes approximately ten years for the combination of chemicals used to gum the carpet in at the mental health clinic to impact the human body.
Wednesday September 20, 2006 - 02:16am (EDT)
It takes approximately ten years for the combination of chemicals used to gum the carpet in at the mental health clinic to impact the human body.
Wednesday September 20, 2006 - 02:16am (EDT)
Entry for September 18, 2006
The Bird Cage (Second Edit)
As distasteful as it is, you learn quickly about disability issues when your world is limited by physical or psychological barriers.
It’s not about disability. It’s about ability. I had to learn the basic skills I needed to cope with my situation. Most of that was establishing habit and doing fine adjustments on things like motor skills, fatigue and focus. The psychological brick-a-bract, the self esteem issues, the desire to fit in, and the courage to go after the things I wanted soon followed. For my personality type there’s nothing quite as motivating as someone telling me that I can’t do something or that I am not good enough to do something. That really that winds my key.
By far the most difficult things for me to adjust to were the limits that other people put on me. That had always been the case. But it becomes much more familiar when you are disabled. Statistically, in the work place, a disabled person will typically out perform an abled person when basic needs are accommodated. There are millions of disabled people who work and are not accommodated. If you are disabled you must stay in your place. If you do well, you incur animosity. Almost certainly your disability will be viewed by some as an advantage. You become recognizable as different. Social isolation is common. The challenges that some people face are far greater than what other people face but you must never, I repeat never compare disabilities. As Cervantes, the man that wrote “The Man of Lamancha” wrote, “comparisons are odious.”
Every person’s situation is unique, and uniquely painful. I stayed busy. When I got back from the hospital in San Antonio, I hit the ground running. I was active in the church choir. I played in bands. I became the president of the Catholic Youth Organization and became Student Council President. I slept a lot. I’d be in bed right after dinner on nights when I had nothing to do. My bed was between two huge speakers from the first stereo built in the 1960s. The dial glowed green and threw weird shadows against the wall. I listened to KRCB in Council Bluff Iowa, and had vivid dreams of working there. I occasionally listened to KFMQ in Lincoln.
I had managed to cope most of my life with my situation. It was a dreamy existence. Because of the autism, I had developed a keen hyper-focus. I was very present tense when I was oriented. When I wasn’t it was like being drugged. It had taken me eight years to get my B.A. The hypersomnia was bad. I slept all the time. In the mid nineties it became obvious that I would have a difficult time establishing and maintaining a career with my limits. It had taken me that long to develop the skill to see my limitations.
I saw a doctor for a consult and was tagged with the diagnosis Attention Deficit Disorder Residual. I had never had any other psychological diagnosis tagged onto me before except for PTSD. I was put on cognitive enhancers. The Doc gave me Ritalin at first which I couldn’t stand. It made me feel high all the time. The first hour you shit like a duck and smelled like pee. It milks peak experiences. I was already hyper-present. For the first week I talked fast. It caused great muscle tension. That’s why kids don’t like it. I developed a strong compassion for special need kids that I had not fully engaged before. I began looking for solutions.
I ended up on Dexedrine and Aderil alternatively. In the interim I looked for other solutions. I applied for a grant to get biofeedback equipment at the clinic and succeeded. At a very primitive level I began to learn about nuerofeedback. Nuerofeedback works for me now as does various forms of oxygen enhancement. It is in fact, nuerofeedback is statistically, more effective than psychostimulants alone. In some cases it is even more effective without. I ditched the speed.
Psychostimulants played their role. Some people need them. Despite the liabilities of taking the drugs on a daily basis it worked for me. I woke up. I was able to maintain wakefulness. My whole world opened up. I ended up in program management.
I was getting more assertive with what I needed to succeed and more self aware of my liabilities. My immediate boss offered me two solutions when I got promoted. I was told I could work at home, when I needed to. This was essential for curriculum development, and I was allowed to take breaks when I needed them. This became an issue after about an hour of intensive work. I knew I assimilated information better verbally than in a written form so I asked to be briefed on important issues and not over stimulated. These few things provided a clear road to success for my pilot programs. We stayed on task and successful for three years. She had enabled me to succeed.
These simple things also provided a roadmap on how to sabotage my success.
The disabilities contract signed by my supervisor and countersigned by the director of the clinic was admitted as evidence.
This is how that happened.
The ADA specifies that an older worker must be informed a week in advance when a termination contract is presented. The over 40 workers is allowed to review the contract in advance in a situation conducive to understanding it. It is acknowledged by the federal government that reestablishing a career after the age of 40 is extremely difficult. In a sense, it is regarded as a disability, and covered by disability laws. Management is required to inform the worker get a lawyer and that lawyer needs to be present at any termination meeting. None of the legal protocol was followed. I was surprised with the contract and asked to read and sign it on the spot. I was double teamed by two senior management people who traded rapid fire accusations and threats as I tried to read the contract. The meeting lasted well over an hour.
Hawaii has an "at will" law, meaning that essentially you can fire anyone at anytime for any reason. These elaborate manuervers were not needed. I could have been fired outright.
It was under these circumstances that I refused to resign. I was fired and left after signing a contract. I knew it was not binding, but it released my paycheck and expedited unemployment insurance. With the termination contract tucked into my pocket I left. It was the night before Thanksgiving, 1997. My girl friend and I returned that night with a senior management official and we cleaned out my office. I left everything in order, including the books I had bought out of pocket for the program.
In a most shameful act I was not allowed to terminate with clients, one of which committed suicide shortly after I left. Nobody knew what had happened to me. The foster parents I supervised had asked for a Ho’o’pono’pono ceremony which is how Native Hawaiians traditionally problem solved difficult family situations. They were promised this ceremony. It never happened. It was in this manner I left one of the most important positions in my career. It was a job that was more than a job. It was a charge by the Hawaiian community to serve there. Something I took very seriously. Seriously enough to stand my ground as it was ripped out from under me.
It was the popping of yet another bubble in the bigger picture, a red flag over something not quite right. My cognition was deteriorating.
Entry for August 07, 2007
The Bird Cage With Notes
On A Visit To A Viet Nam Casualty Ward
This photograph was taken in the Early 1970s. Pictured are Don Fawn, Michael Zangari (On brace), Colleen and Cathy Williams and Suzy Hearn. That is not the way Susan's last name was spelled in the paper. It was wrong. I had to guess about the right spelling. . But then again the paper said I wasn't in the picture. Dave Fisher is somewhere in the background doing Dave Fisher things, though the papers says he is Dennis Daugherty. Dennis Daugherty was in the Mamas and the Papas. I'm not sure he sat in with us. Dave wasn't exactly thrilled to be in the church choir, evidently or was getting the full force of the resentment for doing "California Dreaming" in church. We did some odd songs for a Catholic choir. Songs like the Animals "Sky Pilot" We did songs by the Buffalo Springfield and the Association as well. Don did "Embryonic Journey" and "Good Shepard" by the Jefferson Airplane to fill time.. We were popular. People pretty much left us alone. If there was a lot of behind the scenes action, I'll never know. The sixties were over. The news hadn't reached us yet. I do know that a woman in the congregation once brought us a copy of "Why Me Lord" by Kris Kristofferson to learn. But we didn't. I'll take that one to my grave. We should have learned it. The photo is a U.S. Air Force photo by David Hartley and appeared in the Offutt Air Force Base paper. We were performing at the local psychiatric hospital in Omaha. It was another captive audience. We got a USO bus when ever we performed off base. I liked that. Riding in the dark. We took that bus one other time to the Nebraska State Penitentiary. Another captive audience. It was our Folsom Prison Blues show, the girls in their famous mini-dresses out there in front. We got paid in cake.
In rewriting this I wanted to make clear that this is not a snot on the sleeve kind of essay. I survived very well thanks to a good family and friends. People asked for it for perspective. I was glad to give it. I claim my life everyday. And celebrate it.
Entry for September 18, 2006
The Bird Cage (A Third Edit)
In the Kurt Vonnegut novel “Sirens of Titan,” Malachi Constance, the main character, is kidnapped and imprisoned on Titan one of the moons of Mars. He is forced to endure mind control and is made to march in the army of Mars.
Of his experience Malachi Constance was reflective. He said “I was a victim of a series of accidents. As are we all.”
I have been a pinball most of my life. Shot into space in a random trajector. I have fallen against electronic bumpers and rebounded into maze tunnels that spit me out for ten points, or lofted me gently between the flippers into another blank start against the plunger. Like Malachi Constance, it has been a long series of accidents that have brought me here. There have certainly been contributing factors along the way psychologically and physically. It's exactly like pinball in the brain. The hip. The number of beers. The song on the jukebox or the sensitivity to tilt all have an impact.
It is all the product of the factors of existence gummed together by the torch of suffering in dark eyes and the need for action. We all need to keep moving.
To this day I’ve tried to play it the way it fell. With varying degrees of success. As have we all. You do the best with what is flippered to you.
I was born with a heart murmur which impacted the way the left hemisphere of my heart pounded in my chest. In this case, it beat weakly. The blood picks up oxygen in the left hemisphere of the heart and pinballs it to the brain, which impacts cognition. The lower levels of oxygen have made me hypersomnic most of my life. I sleep a lot. Even when I am awake. It was observed in school early on that I was probably autistic. Later I was diagnosed with Attention Deficit Disorder. The truth is, I was sleepy.
Show me a child with significant cognitive difficulties and I'll show you a heart murmur or heart defect. It's about oxygen delivery.
I had to teach myself to write. I didn’t learn it in school. I had a hard time paying attention. I liked to read. I learned to write by imitating the words I read.
I was basically “in a world of my own” as my mother is fond of saying. In sixth grade when I started watching Johnny Carson on television I discovered stand up comedy.This shocked me back into the world. The comedians were commenting on what they saw. It was funny. I gave it a shot in class with solid results. I did a guest shot from the back of the room. I had an indulgent teacher who laughed at my jokes. i stayed after to sit at her desk and talked about life. Later, she rode a pinball to the Marshall Islands mid-term to follow her husband's assignment. The incoming teacher was a tougher audience.
My fate had shifted again.
I learned my third lesson about success in the entertainment industry in the seventh grade. I was had just come from a successful year run in sixth grade. I knew about applause. In fifth grade I had leaned about jealousy. People resented you when you did well. It was a wheel inside a wheel. Acceptance and rejection spun inside each other like fancy hub caps. I thought I was ready for a bigger venue. I was hooked on the acceptance. The jealousy was irrelevant, or part of the candy of success. It was just validation. People didn't appreciate my act. It was clear that my humor needed to evolve beyond the sixth grade.
Entering seventh grade I had to do it all over again. My prior success in a small pond did not transfer. Nobody knew who I was in the big school. I didn’t look right. I didn’t smell right. I was not accepted immediately by everyone. I was not the sun in everybodys life that I was at home. I was the bottom of the pile again. I was nobody and not particularly welcome. I was still a fish in a pond. A very big pond. I needed a vinyl jacket to fit in and got one. It didn't help my status any. It was just a uniform for the Army of Mars. I learned how to march.
Two years later I was diagnosed with scoliosis. This is a rare bone disease in males that makes the spine twist into a “s” curve like the roads in the mountains above Monte Carlo. I leaned to the right like the tower in Pisa.
In females, the disease is more common. I had friends who had the disease and had their spines fused as a mandatory treatment. The males got back braces without the surgery. I was told that I would have to wear a hulking, erector set of a brace. The doctor explained this as best as he could. My mom was in tears. I went into shock. I didn't know what the heck he was talking about or why my mother was crying. It would be ok.
I was going to wear the Eiffel Tower under my vinyl jacket. That's all.
In those years, the brace fit like a bird cage with a harmonica rack up under the chin. It was huge. It could not be ignored. They prepared the students in school for my return to class. I was going to be wearing armor to class. I was one of the first to get the brace.
One day I disapeared from school.
Nobody knew what happened to me. They assumed there had been a tragic back injury. Most people thought I broke my neck. It was all a big secret. Everybody knew it must have been terrible.
I was whisked off to a hospital in San Antonio, Texas to be fitted with the hardware.
My father was in the Air Force. The medical costs were covered by the CHAMPUS program.
I was carried onto an airplane on a stretcher. It was a Med Evac plane with a big red cross on the tail. The plane was the size of an airliner. There was one guy sitting in his pajamas and slippers in front, and I was in the back in my sling, hanging from the ceiling and swaying as the jet took off.
Laying in a stretcher carried by medics into the airplane was the first clue that things were not going to be the same. This was serious. My dad following behind was the second clue. He had always in front. Now he was walking behind my cart like at the president's funneral. Like I had been assassinated.
I took theairplane ride flat on my back, suspended from cables from the roof of the airplane. It was an interesting angle. I was well into another level of shock.
En route, the snow began to fall. I could hear them talk about it on the intercom. Visibility was a factor. Out the window, the view was as gray-blue as the blanket that was spread over me. Bad conditions beame a blizzard. Conditions were as bleak as a shaved poodle. With limited or no visability, the plane was forced down in Denver, Colorado, where we were to wait the storm out before continuing on to Texas.
The cold air hit me as they carried me into the ambulance.
My dad didn't ride along. We were seperated. I was going to have to make it without the constant gin rummy game that was going on between us. That was the mantra. "Gin." Racking up a million and one points to fill my empty head as we crossed the country. He stayed at the barracks. I went into the hospital.
It was a chilly dog out there, alright.
I mentioned that I could walk.
The corpman looked at me and shook his head.
"No, you can't."
I dropped into another level of shock in the box of shock box.
I couldn't walk.
The only place for me to stay in Denver was the Fitzsimmons Army Medical Facility. This was at the peak of the Viet Nam conflict. The casualties were so heavy that they had to screen in the lanai that circled the hospital and turn in into one long ward where the amputees arrived from the battlefields for treatment. I was placed in this ward for several days. I was the only person in this endless ward who had not lost a limb. The wounds were so fresh that they were still bleeding. The norm was a bloody bandage over a severed limb or mangled face. I was 14.
"No you can't" I thought.
I watched the ward with big eyes. It came alive after midnight with tears and pain. In the daytime it bustled with activity. The nurses came and went at a blinding speed. I tried to stay small and quiet in my bed. I watched people cope. Some were better than others. Some chose to be mean and abusive. Others nice as pie. Shock comes in many flavors and kinds.
I understood in a way I have never understood before or since what reality is. It's a crap shoot full of shrapnel.
As distasteful as it is, you learn quickly about disability issues when your world is suddenly limited by physical or psychological barriers. I saw it. I experienced it.
I came out of Fitzsimmons changed. It’s wasn't about disability anymore. It was about survival, anger and tears. It was about consiquence.
And when I got back to school in my cage, I understood it even better.
The people staring at me as I walked down the hall. Thier eyes were always there. When I bent in half or got on my knees to get a drink of water.
"Cripple" someone would yell, then run away.
I knew anger like I never knew it before. Visceral. Flaring. Real. I also knew compassion. I had a metal bar infront of me. Hugs didn't quite get to me. A friend's girlfriend wanted me to feel a hug and gave me one. Carefully placing the bar between her breasts and snuggling in. Another moment of awakening.
It’s about ability.You have to find the ways that work.
I had to learn the basic skills I needed to cope with my situation.
Most of that was establishing habit and doing fine adjustments on things like motor skills, fatigue and focus. The psychological brick-a-bract, the self esteem issues, the desire to fit in, and the courage to go after the things I wanted soon followed. For my personality type there’s nothing quite as motivating as someone telling me that I can’t do something or that I am not good enough to do something. That really that turns the key in the lock.
By far the most difficult things for me to adjust to were the limits that other people put on me. That had always been the case. But it becomes much more intimate when I understood what it meant to be disabled. Even to the degree I was.
Statistically, in the work place, a disabled person will out perform an more ambled person when basic needs are accommodated. There are millions of disabled people who work and are not accommodated. Skill level alone does not account for the general level of success.
If you are disabled you are expected to stay in your place. That place is ideally on a poster for a fundraiser where you can be airbrushed to perfection and glow printed. In the work place you are real and present. People can be uncomfortable around you. If you do well, you incur animosity. Almost certainly your disability will be viewed by some as some kind of an advantage. Your privileges as a disabled person are regarded as an unfair advantage by some over ordinary workers. You become even more recognizable as different, not only by disability, but by status.
Social isolation is common.
The challenges that some people face in the work place are far greater than what other people face but you must never, I repeat never compare disabilities. As Cervantes, the man that wrote “The Man of Lamancha” wrote, “comparisons are odious.”
Every person’s situation is unique, and uniquely painful.
I stayed busy. When I got back from the hospital in San Antonio, I hit the ground running. I was active in the church choir. I played in bands. I became the president of the Catholic Youth Organization and Student Council President. I slept a lot. I’d be in bed right after dinner on nights when I had nothing to do. My bed was between two huge speakers from the first stereo built in the 1960s. The dial glowed green and threw weird shadows against the wall. I listened to KRCB in Council Bluff Iowa, and had vivid dreams of working there. I occasionally listened to KFMQ in Lincoln.
I was completely emeshed in the radio broadcasts. They were my life. What I looked forward to. I began to learn the name of the songs.
I had managed to cope most of my life with my situation. It was a dreamy existence. Because of the autism, I had developed a keen hyper-focus. I was very present tense when I was oriented. When I wasn’t it was like being drugged. It had taken me eight years to get my B.A. The hypersomnia was bad. I slept all the time. In the mid nineties it became obvious that I would have a difficult time establishing and maintaining a career with my limits. It had taken me that long to develop the skill to simply see my limitations.
Everything else was attitude and show biz.
And the shock box. What doesn not kill you makes you stronger. That which kills you makes you dead. What else was there?
This photograph was taken in the Early 1970s. Pictured are Don Fawn, Michael Zangari (On brace), Colleen and Cathy Williams and Suzy Hearn. That is not the way Susan's last name was spelled in the paper. It was wrong. I had to guess about the right spelling. . But then again the paper said I wasn't in the picture. Dave Fisher is somewhere in the background doing Dave Fisher things, though the papers says he is Dennis Daugherty. Dennis Daugherty was in the Mamas and the Papas. I'm not sure he sat in with us. Dave wasn't exactly thrilled to be in the church choir, evidently or was getting the full force of the resentment for doing "California Dreaming" in church. We did some odd songs for a Catholic choir. Songs like the Animals "Sky Pilot" We did songs by the Buffalo Springfield and the Association as well. Don did "Embryonic Journey" and "Good Shepard" by the Jefferson Airplane to fill time.. We were popular. People pretty much left us alone. If there was a lot of behind the scenes action, I'll never know. The sixties were over. The news hadn't reached us yet. I do know that a woman in the congregation once brought us a copy of "Why Me Lord" by Kris Kristofferson to learn. But we didn't. I'll take that one to my grave. We should have learned it. The photo is a U.S. Air Force photo by David Hartley and appeared in the Offutt Air Force Base paper. We were performing at the local psychiatric hospital in Omaha. It was another captive audience. We got a USO bus when ever we performed off base. I liked that. Riding in the dark. We took that bus one other time to the Nebraska State Penitentiary. Another captive audience. It was our Folsom Prison Blues show, the girls in their famous mini-dresses out there in front. We got paid in cake.
In rewriting this I wanted to make clear that this is not a snot on the sleeve kind of essay. I survived very well thanks to a good family and friends. People asked for it for perspective. I was glad to give it. I claim my life everyday. And celebrate it.
Entry for September 18, 2006
The Bird Cage (A Third Edit)
In the Kurt Vonnegut novel “Sirens of Titan,” Malachi Constance, the main character, is kidnapped and imprisoned on Titan one of the moons of Mars. He is forced to endure mind control and is made to march in the army of Mars.
Of his experience Malachi Constance was reflective. He said “I was a victim of a series of accidents. As are we all.”
I have been a pinball most of my life. Shot into space in a random trajector. I have fallen against electronic bumpers and rebounded into maze tunnels that spit me out for ten points, or lofted me gently between the flippers into another blank start against the plunger. Like Malachi Constance, it has been a long series of accidents that have brought me here. There have certainly been contributing factors along the way psychologically and physically. It's exactly like pinball in the brain. The hip. The number of beers. The song on the jukebox or the sensitivity to tilt all have an impact.
It is all the product of the factors of existence gummed together by the torch of suffering in dark eyes and the need for action. We all need to keep moving.
To this day I’ve tried to play it the way it fell. With varying degrees of success. As have we all. You do the best with what is flippered to you.
I was born with a heart murmur which impacted the way the left hemisphere of my heart pounded in my chest. In this case, it beat weakly. The blood picks up oxygen in the left hemisphere of the heart and pinballs it to the brain, which impacts cognition. The lower levels of oxygen have made me hypersomnic most of my life. I sleep a lot. Even when I am awake. It was observed in school early on that I was probably autistic. Later I was diagnosed with Attention Deficit Disorder. The truth is, I was sleepy.
Show me a child with significant cognitive difficulties and I'll show you a heart murmur or heart defect. It's about oxygen delivery.
I had to teach myself to write. I didn’t learn it in school. I had a hard time paying attention. I liked to read. I learned to write by imitating the words I read.
I was basically “in a world of my own” as my mother is fond of saying. In sixth grade when I started watching Johnny Carson on television I discovered stand up comedy.This shocked me back into the world. The comedians were commenting on what they saw. It was funny. I gave it a shot in class with solid results. I did a guest shot from the back of the room. I had an indulgent teacher who laughed at my jokes. i stayed after to sit at her desk and talked about life. Later, she rode a pinball to the Marshall Islands mid-term to follow her husband's assignment. The incoming teacher was a tougher audience.
My fate had shifted again.
I learned my third lesson about success in the entertainment industry in the seventh grade. I was had just come from a successful year run in sixth grade. I knew about applause. In fifth grade I had leaned about jealousy. People resented you when you did well. It was a wheel inside a wheel. Acceptance and rejection spun inside each other like fancy hub caps. I thought I was ready for a bigger venue. I was hooked on the acceptance. The jealousy was irrelevant, or part of the candy of success. It was just validation. People didn't appreciate my act. It was clear that my humor needed to evolve beyond the sixth grade.
Entering seventh grade I had to do it all over again. My prior success in a small pond did not transfer. Nobody knew who I was in the big school. I didn’t look right. I didn’t smell right. I was not accepted immediately by everyone. I was not the sun in everybodys life that I was at home. I was the bottom of the pile again. I was nobody and not particularly welcome. I was still a fish in a pond. A very big pond. I needed a vinyl jacket to fit in and got one. It didn't help my status any. It was just a uniform for the Army of Mars. I learned how to march.
Two years later I was diagnosed with scoliosis. This is a rare bone disease in males that makes the spine twist into a “s” curve like the roads in the mountains above Monte Carlo. I leaned to the right like the tower in Pisa.
In females, the disease is more common. I had friends who had the disease and had their spines fused as a mandatory treatment. The males got back braces without the surgery. I was told that I would have to wear a hulking, erector set of a brace. The doctor explained this as best as he could. My mom was in tears. I went into shock. I didn't know what the heck he was talking about or why my mother was crying. It would be ok.
I was going to wear the Eiffel Tower under my vinyl jacket. That's all.
In those years, the brace fit like a bird cage with a harmonica rack up under the chin. It was huge. It could not be ignored. They prepared the students in school for my return to class. I was going to be wearing armor to class. I was one of the first to get the brace.
One day I disapeared from school.
Nobody knew what happened to me. They assumed there had been a tragic back injury. Most people thought I broke my neck. It was all a big secret. Everybody knew it must have been terrible.
I was whisked off to a hospital in San Antonio, Texas to be fitted with the hardware.
My father was in the Air Force. The medical costs were covered by the CHAMPUS program.
I was carried onto an airplane on a stretcher. It was a Med Evac plane with a big red cross on the tail. The plane was the size of an airliner. There was one guy sitting in his pajamas and slippers in front, and I was in the back in my sling, hanging from the ceiling and swaying as the jet took off.
Laying in a stretcher carried by medics into the airplane was the first clue that things were not going to be the same. This was serious. My dad following behind was the second clue. He had always in front. Now he was walking behind my cart like at the president's funneral. Like I had been assassinated.
I took theairplane ride flat on my back, suspended from cables from the roof of the airplane. It was an interesting angle. I was well into another level of shock.
En route, the snow began to fall. I could hear them talk about it on the intercom. Visibility was a factor. Out the window, the view was as gray-blue as the blanket that was spread over me. Bad conditions beame a blizzard. Conditions were as bleak as a shaved poodle. With limited or no visability, the plane was forced down in Denver, Colorado, where we were to wait the storm out before continuing on to Texas.
The cold air hit me as they carried me into the ambulance.
My dad didn't ride along. We were seperated. I was going to have to make it without the constant gin rummy game that was going on between us. That was the mantra. "Gin." Racking up a million and one points to fill my empty head as we crossed the country. He stayed at the barracks. I went into the hospital.
It was a chilly dog out there, alright.
I mentioned that I could walk.
The corpman looked at me and shook his head.
"No, you can't."
I dropped into another level of shock in the box of shock box.
I couldn't walk.
The only place for me to stay in Denver was the Fitzsimmons Army Medical Facility. This was at the peak of the Viet Nam conflict. The casualties were so heavy that they had to screen in the lanai that circled the hospital and turn in into one long ward where the amputees arrived from the battlefields for treatment. I was placed in this ward for several days. I was the only person in this endless ward who had not lost a limb. The wounds were so fresh that they were still bleeding. The norm was a bloody bandage over a severed limb or mangled face. I was 14.
"No you can't" I thought.
I watched the ward with big eyes. It came alive after midnight with tears and pain. In the daytime it bustled with activity. The nurses came and went at a blinding speed. I tried to stay small and quiet in my bed. I watched people cope. Some were better than others. Some chose to be mean and abusive. Others nice as pie. Shock comes in many flavors and kinds.
I understood in a way I have never understood before or since what reality is. It's a crap shoot full of shrapnel.
As distasteful as it is, you learn quickly about disability issues when your world is suddenly limited by physical or psychological barriers. I saw it. I experienced it.
I came out of Fitzsimmons changed. It’s wasn't about disability anymore. It was about survival, anger and tears. It was about consiquence.
And when I got back to school in my cage, I understood it even better.
The people staring at me as I walked down the hall. Thier eyes were always there. When I bent in half or got on my knees to get a drink of water.
"Cripple" someone would yell, then run away.
I knew anger like I never knew it before. Visceral. Flaring. Real. I also knew compassion. I had a metal bar infront of me. Hugs didn't quite get to me. A friend's girlfriend wanted me to feel a hug and gave me one. Carefully placing the bar between her breasts and snuggling in. Another moment of awakening.
It’s about ability.You have to find the ways that work.
I had to learn the basic skills I needed to cope with my situation.
Most of that was establishing habit and doing fine adjustments on things like motor skills, fatigue and focus. The psychological brick-a-bract, the self esteem issues, the desire to fit in, and the courage to go after the things I wanted soon followed. For my personality type there’s nothing quite as motivating as someone telling me that I can’t do something or that I am not good enough to do something. That really that turns the key in the lock.
By far the most difficult things for me to adjust to were the limits that other people put on me. That had always been the case. But it becomes much more intimate when I understood what it meant to be disabled. Even to the degree I was.
Statistically, in the work place, a disabled person will out perform an more ambled person when basic needs are accommodated. There are millions of disabled people who work and are not accommodated. Skill level alone does not account for the general level of success.
If you are disabled you are expected to stay in your place. That place is ideally on a poster for a fundraiser where you can be airbrushed to perfection and glow printed. In the work place you are real and present. People can be uncomfortable around you. If you do well, you incur animosity. Almost certainly your disability will be viewed by some as some kind of an advantage. Your privileges as a disabled person are regarded as an unfair advantage by some over ordinary workers. You become even more recognizable as different, not only by disability, but by status.
Social isolation is common.
The challenges that some people face in the work place are far greater than what other people face but you must never, I repeat never compare disabilities. As Cervantes, the man that wrote “The Man of Lamancha” wrote, “comparisons are odious.”
Every person’s situation is unique, and uniquely painful.
I stayed busy. When I got back from the hospital in San Antonio, I hit the ground running. I was active in the church choir. I played in bands. I became the president of the Catholic Youth Organization and Student Council President. I slept a lot. I’d be in bed right after dinner on nights when I had nothing to do. My bed was between two huge speakers from the first stereo built in the 1960s. The dial glowed green and threw weird shadows against the wall. I listened to KRCB in Council Bluff Iowa, and had vivid dreams of working there. I occasionally listened to KFMQ in Lincoln.
I was completely emeshed in the radio broadcasts. They were my life. What I looked forward to. I began to learn the name of the songs.
I had managed to cope most of my life with my situation. It was a dreamy existence. Because of the autism, I had developed a keen hyper-focus. I was very present tense when I was oriented. When I wasn’t it was like being drugged. It had taken me eight years to get my B.A. The hypersomnia was bad. I slept all the time. In the mid nineties it became obvious that I would have a difficult time establishing and maintaining a career with my limits. It had taken me that long to develop the skill to simply see my limitations.
Everything else was attitude and show biz.
And the shock box. What doesn not kill you makes you stronger. That which kills you makes you dead. What else was there?
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