The dreams precede the event. They are prophecy, or destiny, or possibly both and neither and once the cycle begins, it moves inexorably towards reality. The powers of the subconscious are the least astute mechanisms of revelation, and when my unconsciousness and waking state finally achieve symbiosis, it is always too late.
The scenario is the same. I am desperately trying to get somewhere: a mysterious village, an abandoned quarry, the fog covered slopes of a glaciated mountain. While these are all places that compel me to return, locations where an extraordinary emotional experience took place, they do not exist. Yet the dreams are vivid to the subatomic; they evoke a profound tragic confrontation, and sometimes I get very close to my destinations, but, night after night, the outcome remains the same. I never reach them.
For weeks my body had been trying to communicate a very simple message to me: I will not achieve my goals. And now the dreams have stopped and I am awake.
On August 9th, 2008, the comedian Bernie Mac died from Sarcoidosis, a chronic illness that I have been battling for more than twenty years. A day earlier, by a curious neatness of fate, my pulmonary doctor told me that I was facing the most complicated and dangerous relapse he had ever seen.
This blog is comprised of excerpts from a journal I began in August of last year. I am currently in the throes of the longest continuous flare up of Sarcoidosis that I have ever experienced; now surpassing fourteen months. It is likely that this condition will persist for the remainder of my lifespan.
Sarcoidosis is a debilitating, multi-systems disease of unknown origins. It causes an out-of-control immune system response to infection, creating a cellular army that can destroy every organ in the body. Modern medicine barely grasps the mechanisms of this potentially fatal illness and the pharmalogical arsenal for combating it is pitifully inadequate.
I have one of the most atypical and severe cases of Sarcoidosis on record. I suffer from a complex strain that is unpredictable and extremely resilient.
Sarcoid has affected my lungs, liver, blood, eyes, skin, bladder, teeth, bones, nervous system and brain. My Sarcoid is never going to be defeated. It may return to remission, but it will never be extinguished.
Everyone reacts to physical challenge differently, but regardless of whether one chooses to face it with courage and faith or cynicism and despair, it profoundly affects every aspect of your life.
While the actual effects of being sick with Sarcoid have been tremendously debilitating, there is no question that the worst devastation has been the high dosage treatment of the corticoid steroid Prednisone. Prednisone works wonders for patients with a wide variety of ailments and it can explosively jolt Sarcoid into remission. It is an immune system suppressor, a dangerous, devastating drug with long term physical and psychological side effects.
Prednisone, in me, produces psychosis, delusions, hallucinations, memory loss, missing time, paranoia, irrational behavior, identity confusion, inexplicable moods, self mutilation, and suicidal ideology. It alters my ability to make coherent judgments. I’ve had instances where I, quite literally, did not know who I was. I have suffered from paralyzing paranoia and terrifying hallucinations. Prednisone transports me into an unpredictable dream world, disrupting, absolutely, the status of my real world existence; destroying all that I have built: projects, relationships, because when I’m undergoing treatment I am not living in a human world. I am an outsider, terrified of the real world because it is so radically different from my Prednisone induced reality.
When treatment ends and my body restabalizes I lose part of my humanity because the treatments are long enough for me to establish behavioral responses to the altered states of consciousness I experience and these behaviors reconstitute back to human reality.
On Prednisone I look at the normal world across an inaccessible chasm. When the treatment ends and I’m picking up the pieces of my shattered personal and professional life I experience a complex sense of confusion as to whom and what I really am. I feel out of place in the normal world when I’m on Prednisone yet I feel doubly uncomfortable when I’m off the drug. I lose either way.
Despite the horrors I have described, Prednisone is a remarkable drug for combating my illness. It works immediately, which is essential when the Sarcoid is affecting my ability to breathe. But one pays a high price for its services, and ultimately it is not a cure.
Prednisone has recently become toxic to me and it is unlikely that my body will ever again be able to physically tolerate it for any duration. The alternatives are unsettling. I have doctors who want to put me on other drugs that have, at best, a dubious ability to help Sarcoid patients. They are cancer drugs that were designed for completely different purposes and it would take several months before there was any indication that they were helping. In the meantime they would change the structure of my cells while producing extreme nausea, hair loss and other drastic side effects. There’s a drug called Methotrexate which can actually cause lymphoma. There is an intravenous drug, Remicade, which would produce even more severe side effects and because it is not FDA approved for Sarcoid, my insurance would not pay for it. Going on Remicade would be the equivalent of my buying a new sports car every month and there would be no guarantee that it would help and a complete assurance that it would make my life insidiously uncomfortable. Prednisone alters my biochemistry, but it is proven to beat Sarcoid into remission. These other drugs would alter me on a cellular level, are devastatingly dangerous and offer no guarantees.
I live my life in a state of fear; not a fear of death, but a fear of the uncertainty. I live my life in an existential waiting room. The fear of sarcoid returning, as seen through my eyes always, is inevitability instead of possibility.
If I had my choice between Sarcoid and having cancer with the certainty that I would be dead in a year I would pick cancer every time. I’m condemned to a life of perpetual precariousness. I can’t make long term life plans because they can and will be obliterated at Sarcoid’s convenience. This is fundamentally the worst form of slavery; living life in servitude, without any real freedom of choice. I can’t have the life that healthy people take for granted. I’m bound to Sarcoid and it is a life long partnership. The divorce will be my death.
I have often wondered what I would have made of my life if I had never gotten sick. Every facet of that pre-Sarcoid world was irretrievably derailed: career, relationships, ambitions, philosophical yearnings. I am traveling a very different path from the one I began and I am fundamentally a much different individual, not evolved, but abruptly changed.
I’ll bet I could have truly moved mountains had not Sarcoid become my world. “What could have been” is the great unknown, an answer I can never know.
The dreams always precede the event. The event always concludes in stalemate. As a conscious life form I do not progress. I endure.
The scenario is the same. I am desperately trying to get somewhere: a mysterious village, an abandoned quarry, the fog covered slopes of a glaciated mountain. While these are all places that compel me to return, locations where an extraordinary emotional experience took place, they do not exist. Yet the dreams are vivid to the subatomic; they evoke a profound tragic confrontation, and sometimes I get very close to my destinations, but, night after night, the outcome remains the same. I never reach them.
For weeks my body had been trying to communicate a very simple message to me: I will not achieve my goals. And now the dreams have stopped and I am awake.
On August 9th, 2008, the comedian Bernie Mac died from Sarcoidosis, a chronic illness that I have been battling for more than twenty years. A day earlier, by a curious neatness of fate, my pulmonary doctor told me that I was facing the most complicated and dangerous relapse he had ever seen.
This blog is comprised of excerpts from a journal I began in August of last year. I am currently in the throes of the longest continuous flare up of Sarcoidosis that I have ever experienced; now surpassing fourteen months. It is likely that this condition will persist for the remainder of my lifespan.
Sarcoidosis is a debilitating, multi-systems disease of unknown origins. It causes an out-of-control immune system response to infection, creating a cellular army that can destroy every organ in the body. Modern medicine barely grasps the mechanisms of this potentially fatal illness and the pharmalogical arsenal for combating it is pitifully inadequate.
I have one of the most atypical and severe cases of Sarcoidosis on record. I suffer from a complex strain that is unpredictable and extremely resilient.
Sarcoid has affected my lungs, liver, blood, eyes, skin, bladder, teeth, bones, nervous system and brain. My Sarcoid is never going to be defeated. It may return to remission, but it will never be extinguished.
Everyone reacts to physical challenge differently, but regardless of whether one chooses to face it with courage and faith or cynicism and despair, it profoundly affects every aspect of your life.
While the actual effects of being sick with Sarcoid have been tremendously debilitating, there is no question that the worst devastation has been the high dosage treatment of the corticoid steroid Prednisone. Prednisone works wonders for patients with a wide variety of ailments and it can explosively jolt Sarcoid into remission. It is an immune system suppressor, a dangerous, devastating drug with long term physical and psychological side effects.
Prednisone, in me, produces psychosis, delusions, hallucinations, memory loss, missing time, paranoia, irrational behavior, identity confusion, inexplicable moods, self mutilation, and suicidal ideology. It alters my ability to make coherent judgments. I’ve had instances where I, quite literally, did not know who I was. I have suffered from paralyzing paranoia and terrifying hallucinations. Prednisone transports me into an unpredictable dream world, disrupting, absolutely, the status of my real world existence; destroying all that I have built: projects, relationships, because when I’m undergoing treatment I am not living in a human world. I am an outsider, terrified of the real world because it is so radically different from my Prednisone induced reality.
When treatment ends and my body restabalizes I lose part of my humanity because the treatments are long enough for me to establish behavioral responses to the altered states of consciousness I experience and these behaviors reconstitute back to human reality.
On Prednisone I look at the normal world across an inaccessible chasm. When the treatment ends and I’m picking up the pieces of my shattered personal and professional life I experience a complex sense of confusion as to whom and what I really am. I feel out of place in the normal world when I’m on Prednisone yet I feel doubly uncomfortable when I’m off the drug. I lose either way.
Despite the horrors I have described, Prednisone is a remarkable drug for combating my illness. It works immediately, which is essential when the Sarcoid is affecting my ability to breathe. But one pays a high price for its services, and ultimately it is not a cure.
Prednisone has recently become toxic to me and it is unlikely that my body will ever again be able to physically tolerate it for any duration. The alternatives are unsettling. I have doctors who want to put me on other drugs that have, at best, a dubious ability to help Sarcoid patients. They are cancer drugs that were designed for completely different purposes and it would take several months before there was any indication that they were helping. In the meantime they would change the structure of my cells while producing extreme nausea, hair loss and other drastic side effects. There’s a drug called Methotrexate which can actually cause lymphoma. There is an intravenous drug, Remicade, which would produce even more severe side effects and because it is not FDA approved for Sarcoid, my insurance would not pay for it. Going on Remicade would be the equivalent of my buying a new sports car every month and there would be no guarantee that it would help and a complete assurance that it would make my life insidiously uncomfortable. Prednisone alters my biochemistry, but it is proven to beat Sarcoid into remission. These other drugs would alter me on a cellular level, are devastatingly dangerous and offer no guarantees.
I live my life in a state of fear; not a fear of death, but a fear of the uncertainty. I live my life in an existential waiting room. The fear of sarcoid returning, as seen through my eyes always, is inevitability instead of possibility.
If I had my choice between Sarcoid and having cancer with the certainty that I would be dead in a year I would pick cancer every time. I’m condemned to a life of perpetual precariousness. I can’t make long term life plans because they can and will be obliterated at Sarcoid’s convenience. This is fundamentally the worst form of slavery; living life in servitude, without any real freedom of choice. I can’t have the life that healthy people take for granted. I’m bound to Sarcoid and it is a life long partnership. The divorce will be my death.
I have often wondered what I would have made of my life if I had never gotten sick. Every facet of that pre-Sarcoid world was irretrievably derailed: career, relationships, ambitions, philosophical yearnings. I am traveling a very different path from the one I began and I am fundamentally a much different individual, not evolved, but abruptly changed.
I’ll bet I could have truly moved mountains had not Sarcoid become my world. “What could have been” is the great unknown, an answer I can never know.
The dreams always precede the event. The event always concludes in stalemate. As a conscious life form I do not progress. I endure.
