The inaugural fundraiser to help the MPN Research Foundation.

Monday, April 17, 2017

Knowledge & Life: Speaking of what we must remain silent

In the western epistemo-metaphysical tradition, it is typical to speak of knowledge as consisting of two components. The first component is what the layman would term "practical experience." The second component is what the layman would call "logic" or "theoretical knowledge."

Practical experience accounts for all the myriad perceptions and happenings which take place on a daily basis. These practical experiences are predicated on the presumed validity of perceptual experience: that what we see, hear, feel, taste, touch bears some accurate resemblance to reality. By themselves, such practical experiences do not yield knowledge: for example, a young child may well see what his mother sees, but the young child has little grasp of how this thing upon which he gazes works, applies to his own life, or any other of countless things which an adult quickly judges to be the case.

Quite naturally, then, in hearing tales of cancers, of MPNs, of myelofibrosis, it is natural to ask the question of the tale teller "But while you may have read about this cancer in a book, how do you really KNOW about it?"

The speaker, the self-appointed expert, in fact often does not have knowledge in this strict sense. In fact, the expert often takes the word of observational data samples as being the last word about the cancer.

It strikes me as quite telling that we are willing to essentially abdicate the unique position which true knowledge holds in what is quite possibly the most important role it can play only in the name of convenience: the knowledge of cancers might well be the most important knowledge we can attain, and we are quick to throw away any standards we might have for this knowledge.

This, I believe, speaks to the heady power of cancer; the power of cancer that causes us to behave so differently on a social scale, the power that a mere linguistic term holds over our social conscience.

This knowledge is what I hopefully can bring to our collective consciousness. Not only do have I some theoretical knowledge of the various processes at play in MPNs, but I am living with advanced myelofibrosis - that is, I am blessed with both components required for that mental state of knowledge: experience as well as logic.

Firstly, my qualifications with respect to logic and an ordering of facts: I have completed all my classwork for a PhD, and have my AM in, philosophy. My rigorous education, specializing in logic and mathematics, has taught me how to approach problems, how to break the complex down to the simple, and how to learn and understand the logic in new material. 

That I am gifted with advanced myelofibrosis is open to debate only insofar as it is called a gift. I have, thanks to the organic damage directly caused by this cancer, nearly died two times. I have been hospitalized, placed in a medically induced coma, had 18 units of blood pumped into me, my wife  told that I will only leave ICU via the morgue, I was intubated, doctors worked in 10 hour shifts to patch my body back together much like humpty dumpty, and I lived - much to the amazement of all parties involved, except me.

The only thing I remember of the incident is that I vomited blood while at work one morning; I was driven to the ER, where I told the admitting staff that I was dying, and they refused to believe me, along with every other person in line. I then patiently took my place in line, and asked everybody ahead of me one more time if I could cut; received the "daggers of death" stares; so I waited 10 minutes.

I then politely, ever so politely, asked the woman in line ahead of me if she could pass me the garbage can, which she did.  I looked at her, and said "Watch this" and vomited up over 1 gallon of blood.

The offers for me to go to the head of line were many, fast, and accompanied by stares which suggested people were now worried about catching something. I moved up in line, a wheelchair came out, and I was wheeled back to the ER where I started to undress, explaining that I was sure I would be there for a while.

As somebody attempted to follow intake procedure, I vomited yet again. They told me not to worry about anything, but just to grab a bed. That was early Wednesday morning; Saturday afternoon I had the breathing tube removed and started recovery.

There is, of course, much more to my story than this single incident. I had been diagnosed 9 months earlier; I had spent many hours crying, completely unsure of what my future might in fact hold for me. 

I had participated in a clinical trial for a new drug, and the doctor for that trial had (I'm convinced of the rightness of this) nearly killed me. That doctor had, repeatedly, told me that none of the pain I had was related to the cancer; that none of the fatigue I was experiencing was related to the cancer; that, in particular, the GI / abdominal issues of which I complained were "all in my head and a sign that I was depressed."

I vomited a total of 3 or 4 gallons of depression that fateful day in March. I think I still have quite a bit of depression left in me.

I spent all the spare time from the time I was first admitted to the hospital and nearly died from an HGB of 4, in July of 2015, to the time I was placed in a coma, in March of 2016, studying. I studied an average of 35 hours per week to understand this cancer, myelofibrosis, and how it did and would impact me.

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