Dying and Loving It

Dying And Loving It

H.H. The Most Ven. Lama Rimpoche, Miss Milkweed L. Augustine PhD

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© 2012 Milkweed L. Augustine. All rights reserved.

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Published by AuthorHouse 9/28/12

ISBN: 978-1-4772-6254-2 (sc)

ISBN: 978-1-4772-6252-8 (hc)

ISBN: 978-1-4772-6253-5 (e)

Library of Congress Control Number: 2012915362

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CONTENTS

Chapter One

Chapter Two

Chapter Three

Chapter Four

Chapter Five

Chapter Six

Chapter Twenty-Eight

Chapter Seven

Chapter Eight

Chapter Nine

Chapter Ten

Chapter Eleven

Chapter Twelve

Chapter Thirteen

Chapter Thirteen

Chapter Fifteen

About The Author

CHAPTER ONE

My name is Lama Milkweed, or just Milkweed.

However I was born very physically ill and with many terrible inborn diseases, which under no circumstance can be either cured or substantially treated. However just the same, I never was given the most minimal reasons why I was born this way, save for medical professionals much later in my life, and although it was always hard, what was even more difficult to bear in this often perplexing situation that deals solely with the physiological and medical, was the traits which were seen on the outside realm, or by my peers, which is albinism, or hypopigmentation. Albinism, but this in itself to we human species serves as nothing that spectacular, but when one looks deeper into the far form inert scope of medical simplicity, one no longer views it as something reflective of the former. It is a defect; yes, a defect.

I was born with a form of the said defect that is to be considered the rarest of the rare, which I later found by a medical physician in Brigham and Women’s’ Hospital in Boston, Massachusetts. A Dr. Murry who is a Professor at Harvard University in the same town, but is a Professor of genetics, and discovered many other things about myself that have been ever loitering in the background all lifelong, but although symptoms were present and often caused numerous hardships, and even near fatal occurrences, were never really further investigated until we were summoned to see this man that day back in January of 2007.

What had been discovered is a blood disease that is very rare in nature, and only albinos get that is inborn into the biochemistry called Hermansky Pudlak Disease which is a devastating disease of the blood that causes depletion of platelets that help the blood coagulate so the person will not bleed to death, but along with this lifelong present condition, it was also found that I have a factor in my blood known as Vonwilibrand disease that many people who do not have the former condition are sometimes victim, especially women.

But there have been many other devastating illnesses in which I also am victim, however the list of tragedies goes onward and onward. Yet in accordance to keeping up to date with these things, it is with marked credibility that I continue my rather translucent journey with things as they come, especially concerning all things medical. Already succumbed to heard attacks, or better known as cardiac incident, renal failures, and many instances where I had to receive blood transfusion after blood transfusion, because if I did not, then my iron content will only continue to drop lower and lower, as I have never once been able to properly assimilate this element better known as ferrous sulfate. But in addition to what I have said about Hermansky Pudlack is that the body’s proteins are completely abnormal in nature, as even a smear placed on a slide makes plainly visible by a mere visual respect.

In fact, I well recall when I had to receive what is called InFed,or iron infusion, in a cancer center where my one and only hematologist had her office outside of the hospital in Brockton, Massachusetts. It was a wonderful experience, because I met many others here, although at this particular time they were undergoing chemotherapy, it was I who was strictly receiving this vital intravenous elemental replacement while no one else had been. People saw that I was severely emaciated and small, as well as the only person, although had a port-a-cath like them all, or better understood as an implanted intravenous access into the chest on either side, I was fed through mine. I felt like I was being fed metal, which in essence I was, but in the process it was sort of exciting to me, because I felt like bonding with my fellow terminal; or if not terminal, then severely ill. However in the sense of an inner perceived self consciousness, I realized that I needed not to be so, although I well understood this mentioned fact of inner perception to be quite the norm, especially when considering something tragic. But I found that despite it all, the overall sense of self consciousness about how I must outwardly appear to these people, did not matter because I soon discovered that we all had one main thing in common-our finality. I laughed a bit in the beginning, because of being so downright nervous, because at that time I did not have cancer, so I did not fit the monotonous criteria of man’s medical dogmas regarding specific groups. When, in essence at least, I actually had. I soon came to the already established sense of introspection in pertinence to this subject of mine, that when one is suddenly placed into a situation like this, or is labeled as terminal, then you become more self conscious than you recently thought you were. Meaning, as in my case, I always believed myself to be very physically ugly and unattractive, which had always been true, but when you discover yourself in a situation which you never though to be in, everything about one ’s self become reassessed and drastically rearranged. In some situations this is often when peoples’ self perception becomes warped, while others become maladjusted and emotionally eschewed, which under these kinds of circumstances, is to be considered very normal. But I personally believe this is the reason as to why we terminal patients become so silly, emotional, and at times, even strange, but not so when concerning our physical afflictions, but more so whenever the world within becomes disjointed, as this often becomes our collective reality. Ahhh, but there is a saying I alone created long ago, and that is reality is anywhere one happens to be.

I remember many instances dozing off and on while under the treatment of I.V. Benadryl, as this is the normal procedure when prememdicating a patient as this is criteria in case an allergic reaction occurs while receiving chemotherapy or intravenous iron infusion, as in my case at this time. I remembered drifting out of the well acquainted daze of la La Land in which I have always liked, especially as a lifetime medical patient who always needed drugs to either sustain my body, or to help manipulate its varied modes of sleep, care, etc. There were many old people here in this particular cancer center, but with each monthly appointment here there were different patients, hence I got to know them all at some point, while others I became well understanding and familure with. Through glazed eyes, which truly loved being this way as I was comfortable in the psychological aspect, which definitely reminded me of my days as an active alcoholic, I looked all around the circumference of this very squared room, and stared at the people as they were either asleep or in midconsciousness. I remember laughing softly to myself as I held my reactions inward like a kid might when viewing something he found very funny in an otherwise non-funny situation, where ethics and a self connected understanding come rushing into the kind of consciousness that has been repetitiously hammered into him from parents and other authoritative figures who literally rule his life, and all of our lives. I saw some of them; all older people, but because they were sleeping and not aware of how they must look to the eyes of others, appeared strangely contorted as their faces were twisted and eyes closed tightly. While there was one old lady who was obviously contented like me, but she was asleep with her sunken mouth hung open, and her hands resting in a spread out-like fashion over those of the chair. I felt my whole sunken and emaciated chest writhing up and down as I looked all around, and my smile was being immediately stifled by my own hand as it suddenly came up to cancel anything that would make me appear ridiculous, or ignorant. I was bursting a gut one might say, but only due to the fact of them appearing so funny through my eyes that although were genuinely learnnerd, were also those of a child although was disciplined. At this time it didn’t matter, because I always wondered if others, whether they were terminally ill or not, suspected they often appeared very ridiculous and even comical by the manner in which we all seem to contort ourselves, especially whenever considering the facial appearances made when suspected no one is around to view.

I found this was one of the things I suddenly manipulated within my very wide arsenal of knowledge and understanding when it came to tailoring an understanding, as well as a means of either communicating my emotions in pertinence to any given situation in a medical setting like this, or when it came for the really big decisions while I later had to make concerning my health-or what was left of it. But in all seriousness, it is this self sustaining of our inner life in which under all circumstances, must be preserved and allowed to manifest, as well as to be sustained. However in order to do so, it is often in this meandering direction that does not go in a straight line, which is in essence, likened to discovering that there are many routes to be taken in the way of healing. To be terminally ill, means there are no tangible ways to cure a specific medical condition.

However in addition to this truth, there exists a poignant contrast, which is the undeniable fact that that person who is terminal, must be treated with a deeper sense of understanding and respect, but a form of said respect that adds considerably to their meaning of contained self worth and well being that is unequivocal. But added to this conversation, is that in many cases likened to the one mentioned here, is that many of us who have come to this overall sense of actually being incurable, or terminal, we often manifest a sense of humor that can at times seem very inappropriate, but considering how those who are in this condition, it is very much so. Because in order for most people to gain a proper sense of perspective on the enormity of such a terrifying concept, humor is often the outer characterization of a very profound and calculated sense of analytical thought about one’s destiny which cannot be placed into extinction. But in addition, there is also edification in such outward behavior where humor is seen when displayed by a terminal patient, such as myself in the past, of a self acquired wisdom that delves much farther than most; even those fellow patients who are cursed with this well established societal characterization.

I always thought back to my younger brother and me when we were children, especially concerning such things about how older people looked to us in our eyes, especially when concerning the above, like waddled necks, and the profiles of the faces, and whatever we could think of that made us laugh. This is it; to simply laugh.

Laughing genuinely produces endorphins, which are a lot likened to bodily morphine, or norepenepherine, which make us feel needed as well as contented. This is one of the not very well understood or known reasons why we that are terminal, who actually can laugh, look forcibly for reasons to carry out this necessary reaction that is strictly humanistic. I, for one, have always loved this truth, and although not well understood from the mentioned point of view just spoken, but is gradually being taken under consideration that we surely look for ways to feel less pain, so we automatically go in search for things that will help us perform this feat. But again it takes someone very special to not only look at things from a lighter side, especially when concerning things as a terminally ill patient waiting to have something that is medically necessary done, and then sees something loitering within the mind which is often childlike, and creates a smile in an otherwise unsavory situation. A form of character that is well adjusted, because he utilizes that same inner child that absorbs the inner tensions, fears, and of course, helps to transgress our fears and very real anxieties.

I often laughed when I should not laugh, but in retrospect I remember asking outright if it was simply okay. Doctors or anesthesiologists, and the like, replied readily to me that it was, so I did not feel so self conscious. Again in retrospect, I also remember that these said medical professionals equally told me that, I was simply doing what is right, and,"everyone should be more like you."

But I still well remember during times as these, that although I should be more like myself, as this was later exceedingly made apparent, it was simply true in my sense of behavior check points that I should not be so apt to worry about what others think of me, and if they see I am terminally ill and about to keel over soon and I can laugh, well then they too should learn from my actions made clearly visible. Perhaps others could learn from people like us; we terminally ill.

* * *

Regarding the above speculation, I often review my own concepts about this need to laugh, but despite the mentioned fact being characteristic of a much deeper truth in accordance with human nature, there equally exists something within that is not too well known regarding most, especially in the lives of those, like me, who are actually actively dying. For instance, in my book previously mentioned, Eternal I.V. Pole. I spoke very specifically and precisely about a subject we especially in the calling of religion, which describes the more conscientious understanding of a tacitly discovered wisdom, which is sometimes consistent when someone, such as myself, learns to take something as lifeless as an i.v. pole, and the machines attached to it, then transforming it into something completely spiritual, and even suggestive of the Godhead. This is generally fueled by the undeniable fact of medical devices, such as the items suggested, the i.v. pole and intravenous pumps, even pain control administration pumps, helping us patients actually remain physically living, or to help what time we have, become less cumbersome and even sorrowful. Hence in the process of psychological and spiritual insight that is often more analytical than anything else, comes to attention a major sense of breakthrough which is highly benidictive of the fact we human beings generally impede on the ideas when we require a nonliving machine that appears comforting to the eye, and to the mind, clearly and not so clearly, it eventually becomes transformed into a sense of gratefulness because of the gift of sustained life in the physical world. But this is often a sense of understanding where not many people care to enter; due to believing their emotions relative to this realization are either funny or mad. When in fact, we who feel this way are really quite sane as they are more emotionally evolved, and not to mention, containing a much higher state of self consciousness which never stops developing regardless of the fact that person deteriorating.

I will share an excerpt from the book, but before I actually do, it is also important to understand that when the desire to share funny things pertaining specifically to dying, there is still evident, a very profound sense of sadness and desire for that suffering individual to grieve. Sometimes laughter means that we who are dying, or catastrophically ill as well, means sadness and the general need we all have, which is the need to be loved, nurtured, cared for, both physically and spiritually, and by doing so, the caregiver, family members, friend, etc, is allowing the said dying or seriously ill person to feel more comfort from all realms.

"Life at the end of an i.v pole does not necessarily mean the end of an existence although the body at times remains resiliently alive as in my case. Even if it should not, at the intervals prior to my state of this renewed resiliency, if there is s heart beating, if there is a physical finite brain is still thinking for itself in pertinence to reassessing his own situation, although he may not be able to actually move about, or to be ambulatory, that person still has a fighting chance to perhaps change his life; even if only from an inner perspective. This in itself can perform miracles. If you feel skeptical, merely flip back through the pages just read. The power of the spirit should never, ever be underestimated. ….hence why it contains the very secretive information that is within us all. How to survive, but equally how to actually" enjoy" doing it.

….In my personal life, the i.v. pole has remained a steadfast figure and as permanent as that of God’s awesome presence and companionship. But the fallible body that developed my true inner self must rely on an entirely different object to survive this earthly realm. The machine, or machines, must be secured to this same pole. They must be held by a permanent object; the i.v. pole as said. Although it is still a cumbersome, even depressing weight I must carry, it is still a glimmering object of vigilance eternal. My desire to remain physically living is as determined as my very desire for God. It is without question! Hence why I believe this is the dominant reason as to why I have them so vividly, and in such a rare perspective all thoughout my hellish existence.

I often think of myself as an object that contains the presence of God’s love; we all are, because we can receive His love and His mercy, His grace, and His forgiveness. However I like to think of myself as a receiving container, like that of the bags I must fill with the precious enternal formulas every night. But the food is now inside of the soft, transparent bag. It resembles, to me, this presence of God that is so steadfastly held in my life that is ever troubled and downtrodden the tubing, so thin and flexible. It is able to both rise and fall with the tides of life’s circumstances, yet remaining resilliant as the result of His great power.

The constant threats against my very physical existence and that of my inner existence; shutting out all others as a means of protection, but only letting in the love and companionship of God, His Son, and all they have taught me as my life arduously continues.

….Trying to make a peaceful existence when one’s very life literally hangs from an i.v pole is surely no simple task for anyone. However when one has this presence of God truly and sincerely in one’s life already, then the impossible can sometimes become a reality; the glorious reality that God is forever with us….the presence of the simple i.v. pole has been as permanent as that of God. There is no end to the sight of this pole. I have long made it a comforting presence rather than into a tedious one. Even when I stumble God always reminds me of its vital significance. I was always on the brink of physical death, due to the medical ills the body fails from time to time. (Falling out of remission)

A private form of physical hell I am well used to…"

Eternal I.V. Pole Co 2003

ISBN# 1-4107-51287-7

ISBN# 1-44107-5125-5

Publisher: Authorhouse by Lama Milkweed L. Augustine

CHAPTER TWO

I well remember during very specific times during my early childhood, and although I was not yet labeled as terminal, but catastrophically ill, my imagination was far from being something nonexistent. Most particular, that of making up little games while lying there in the old hospital beds, sometimes for weeks or days, I was fed through an intravenous placed into my little leg rather than the arm. I never touched it despite the fact I was small, frail, very painfully thin, and I was a child of less than five years old, yet I truly got well acquainted with looking upwards at the clear bags hanging there directly above my head. Although I was nearly completely blind form birth, another well known and accepted defect of being cursed with hypopigmentation, or albinism, I was able to make out an image of what would be, many more out of them, as something very emotionally comforting and soothing. In fact, I still feel today like I had then, the i.v. bags, reminded me specifically of my mother, because of they’re softness and the fact that they actually responded to touch by bouncing back whenever squeezed or poked in. I asked the nurse, when I was three, if I could touch the bag when she changed it for another, because I was so fascinated with it I just could not resist it’s prolific presence in my little life filled with sterile things and special equipment that I was long being exposed to on a nearly constant basis. She smiled and allowed me the joyous privilege, and when I finally had, I squeezed it’s corners which were rounded and were larger seams than those of today as they flared out making them more apparent. I laughed joyfully and I immediately suckled, because of having to be weaned quickly as I grew teeth in only two months following my birth. I found these bags to be very synonymous with soothing appeal like that of my own mother as noted, but again it was marked exclusively with something else as well.

Like my life later on, which only evolved into having to be fed through the chest, or TPN, total parenternal nutrition, also known as hyperelementation, the bags resembled something profound as earlier said. Meaning they reminded me of myself as not only being the receiving container, but at the same time, this bag also signified emptiness and fulfillment. Upon further elaboration of this subject that certainly requires it, the bags themselves remind me of not only them being us as human beings, but more significantly speaking is like God. God resembles the fluid or TPN, or whatever the internal substance may be, but in essence, we are always half full and half empty, and if we were full all of the time, we would feel that we do not need God in our lives, hence we are really always empty; like the clear bags hanging at the end of that i.v pole. Our inevitable tie to Him, and we are being held lovingly, yet loosely by the "hooks" of this pole, which are His own hands as they are spread outwards in perpetual vigilance as He hangs dying upon the wretched cross of the darkest day in all of history; ours and His. But He will not drop those bags, because He loves us that much. The pumps attached to the pole, which is ever there, ever vigilant, are not only us, because of our inevitable need for His love and eternal teachings to better our lives, but in addition there is the line itself which threads through it, and again substantiates that tie we all have to Him. This rising and falling of the tubing or lines that are attached to the bag, then to the pole above, the hooks, which resemble the loving and healing hands of our dear Lord, Jesus Christ. (Amen!)

But these bags; they were a very comforting presence which later on, I found I could not live effectively without them, both actually and inwardly. Indeed something to be the subject for deeper contemplation, but I soon discovered a sensation in which I learned to fixate onto this object solely in the medical world, like the i.v pole, but again was reminiscent of my own mother; something specifically of comfort. A comfort I desperately needed and undoubtedly required, because I was so very sick and very soon to die, but not yet terminal.

I was finally placed on tube feeding, or better known as enternal nutrition, but unlike Parenternal nutrition, or TPN, it was les cumbersome whenever regarding infections and if the patient encounters one, almost guaranteed, the person being fed in this nature will be able to continue functioning shortly after being temporarily struck down. I was so severely malnourished and emaciated due to failure to thrive, it was not even certain if I would be able to actually sustain myself and nevermind being able to stabilize, or normalize my badly depleted nutrition. Very frail like I always had been, my doctor, a Dr. Stephen Merrill, now deceased, and one whom I priorly mentioned in the above book title, had done his very best to literally save me form the clutches of certain demise, was well represented to me as a wondrous manifestation of loving care and compassionate understanding. Yes, this loving, and funny man of medicine, did his utmost to not only serve as the provider of actual care, but a guarding vigilance to a fatally malnourished woman who was still very much a child, but within. I never forgot his caring as well as his personal friendship, but more so, being his patient as it was not only rewarding from an inner perception, it was equally touching on an emotional level of recollection and realization when the past event happened. I loved to think of him as my hero, but just as importantly noted, he was my friend; yes my friend.

In fact, I dare say "I loved him."

These very bags remind me of not only what the former well exemplifies, but just as importantly added is the fact they equally and profoundly resemble, friendships here and long past, as well as loving care and kindness, but overseeing it all through the eyes of a child like I still do today. However seeing terminal illness through these same eyes, although weathered from advanced age and being ravaged from years upon years of literally crippling malnutrition that became starvation, and later famine, but as a form of torture as a child and later as an adult, certainly was not a challenge as I suspected. I found I was literally chosen to understand this aspect of life so many do not even so much as give an inkling of a thought about, and nevermind in this same aspect just mentioned. However it certainly has granted me with the respect and knowledge that even many of my fellow dying does not have, as it is because they have not learned to let go of themselves.

To get back to the encounter with the bags, and in manner that is well signified as satire, I well remember I used to play my games as it were, as I used to try to count the drops from a distance, to me at least, may as well be a hundred yards away. Being almost completely blind from my many defects certainly has it’s disadvantages, besides from all of the terrible hardships so much testified in all of my book titles in their differing genres’. But during my many hidden modes of playfulness there were not many things, about the bags at least, which gave me any sense of realistic joy or gaiety. However as a child I used to imagine going off somewhere in a balloon and in place of it was the prolific i.v. bag. Whenever received my many blood transfusions, and always through my port a cath, or implanted