Frustrations
". . . I did not want to exist on a roller coaster, constantly grasping
an inflated balloon of hope for each successive "cure" . . ."
CHAPTER TWENTY-SEVEN
Frustrations
Returning to college was difficult, as it prompted numerous
explanations as to the cause of my absence. I was honest, relating my
situation as gently as the English vocabulary allowed. I wished no
pity, simply the same cordiality which before had greeted my entry into
the room, and happily this I did receive. Yet more than this, I found
within many eyes a deep incredulousness, as if they were simultaneously
amazed and frightened that such a horrid disorder had pounced so near
to their own lives. Their faces proclaimed "it cannot be!" while they
tried desperately to transform my words into a statement which they
found reasonable and within their capacity to understand. How could
such a thing happen to someone "so young."
One particularly agreeable friend wasted no time in asserting that I
would follow a plan consisting of health food and soon find myself
"detoxified" and on my way to full recovery. Dubious, and rather
self-protective, I hesitantly agreed to accompany her to the local
natural food store to see if the owner knew of any promising, no-fail
treatments for cancer. Once there I was shown a variety of self-cures,
ranging from herbal diets, to drinking carrot juice and exorbitantly
priced tea. I failed to see how such measures could possibly help, for
if they did, would not everyone with cancer be flooding into the store,
rather than laying bedridden in a hospital ward? I looked around at
the people. They appeared to be ill. Carrot juice drinkers, I
presumed! At any rate, water infused with plain tea sounded more
appealing to me, and my friend and I sat down at one of their tables to
peruse several books on the subject of cancer.
Because I had so thoroughly resigned myself to my inevitable death, I
did not relish the thought of inquiring into cures; it was as if these
"cures" threatened my happiness and sense of emotional security, for
once acceptance has been attained it is not easy to smile upon that
which may destroy one's inner peace. When I would try to explain this
feeling, people often thought I housed a "death wish" or that I had no
zest for life. It was a chore to explain this was not true, but
rather, that I did not want to exist on a roller coaster, constantly
grasping an inflated balloon of hope for each successive "cure" and
then falling into the despair of disillusionment when it failed to
enact its promise. I hoped my attitude did not injure my friend's good
intentions; ironically we were each looking out for my well-being...
she wished for my health and I for my sanity.
Scrawling several book titles and clinics on a piece of note paper
I dismissed myself from the store into the fresh autumn breeze.
I determined to check out a book on vitamin C therapy at the library
before going home, although I honestly hoped that the information
therein would prove doubtful and not merit further investigation.
Maybe I was some sort of an odd-ball, I thought, toting the book under
my arm. . .everyone wants to see me cured but me; I wanted that also,
but without the lies and shams that treatment often entailed.
After thoroughly scouring the book for details, I found my previous
assumptions to be correct. It was not proven that vitamin C increased
one's life expectancy and, as I had also surmised, the ingestion
of large amounts could render some ill effects, ranging from mild
discomforts to more serious complications. I was relieved to read
this, as I disliked the idea of taking massive doses of anything;
I respected moderation.
The toxic effects of vitamin C were excessive gas, nausea and diarrhea
(of which I felt I already had enough), urinary burning, irritations of
the mouth, and injury to the tooth enamel, dehydration, a depletion of
minerals in the body, and finally, a temporary increase in pain for
terminal patients and possible risk of hemorrhaging for those with
advanced cancers. Additionally, I found it interesting that vitamin C
in massive doses could speed one's demise if he was near to death,
while bestowing more energy upon those who were not; as I had no way of
discovering in which stage I was classified, should I have been near my
death, I felt no urge to roll out the red carpet of welcome by taking
vitamin C.
So it was that one option of treatment had been thankfully discarded,
and my friend reluctantly nodded in appreciation of my rejection of
vitamin C. I shared an affinity with normalcy and serenity in life,
yet in time I began to see the many trials which lay before me and my
goal; even simplicity is difficult to attain when love and concern are
one's barriers.
Another reaction to a dreaded diagnosis is what I would call "a feeling
of desperation" by the relatives. Flooded by the reality that a family
member may soon die, a relative may override his usual rationality by
playing doctor and assuming what is best for the patient. This type of
behavior is understandable; often a person who loves another will
attempt to do all that is within his capabilities to comfort the sick.
Through fulfilling his own emotional needs, the relative is then better
able to cope with the illness, for he feels he has not simply watched
his loved one fade away.
The relative's source of emotional comfort may lie in the steady
pursuit of all hopeful treatment, reading any related publications on
the disease spanning diet strategies to mega-dosages of vitamins as a
potential cure, or perhaps arranging prayer sessions to pray the
disease away. When one boasts an array of caring friends and
relatives, the suggestions fly; it is quite a compliment and should be
viewed as such. The patient, however, should not feel pressed by these
informative offerings, and always remember that he has the right to
decline their pursuit.
In dealing with an over-zealous relative, it is imperative that a
patient communicates his desires to the relative in a manner that will
accommodate and acknowledge the concern, yet enable him to follow his
own needs. Everyone has a right to decide that which is best for his
emotional well-being, and to assume that an individual's needs are
identical to one's own is, indeed, a great folly and disservice to the
other.
When a person makes choices for another without first consulting him,
it is a direct violation of personal freedom; reactions to this type of
treatment vary. A generally meek person may feel obliged to abide by
his captor's urgings, either through fear of opposition or an
indisposition to openly hurt, an act derived, supposedly, of pure
concern. This type of person is quite vulnerable unless his relatives
are protective of his wishes and do not extend their boundaries when
decisions must be made through making personal demands. When a plan is
devised, fully knowing both the quiet disposition of the patient and
the fact that the plan in question would prove to have a disagreeable
impact on him, the enactment of such a plan would be nothing short of
overt maliciousness.
Another reaction to this decision-making effort may be fury, with the
patient recklessly attacking the relative's "good intentions."
Although anger is justifiable in such situations wherein the patient's
desires were completely overlooked, I feel that wrath is punishment
more harsh than the over-wrought relative merits. One might argue that
if the relative truly had the patient's well-being in mind, he would
have inquired into his wishes before enacting his own. Though
basically true the argument cannot stand alone without also expressing
the necessity for the patient to accept the chaotic mental states
possessed by his relatives as a natural reaction to their own sorrow.
Anger demeans its subject's need to retain hope, whereas a thoughtful
explanation will yield a greater understanding of the entire situation
as faced by all those concerned.
Because I value the ability to choose the routes which I wish my life
to follow, I have similarly felt it is only fair to allow others that
freedom as well; while I may have voiced an opinion toward a subject
concerning someone other than myself, I would never feel it was
acceptable behavior for me to take any action toward the fulfillment of
that opinion. My oldest brother was different from myself in this
regard, as the following story will demonstrate.
Often Todd would take issues into his own hands, apparently feeling
that his way was undoubtedly THE way. It was virtually impossible to
illustrate another viewpoint. Consequently when I received the
diagnosis that I had cancer once again, the dark cloud which fell over
the family receded somewhat after my resolution to forgo chemotherapy,
yet Todd, who lived some distance away from the immediate family, was
unfortunately less informed as to my generally good state of health at
the present time and proceeded to think only of my rapid demise.
Telephones, unhappily, cannot relate the entire picture of one's
health; had he been able to actually see for himself that I was not
fading away with each passing moment, I'm sure the turn of events
would have been different. As it was, however, he decided we were not
preparing ourselves for the onslaught of my disease, and unbeknownst to
us, made an appointment for us to speak with the director of the
"family hospice" service at the local hospital.
On Thanksgiving weekend everyone came home. I was in immensely good
spirits, as I felt so very fortunate to be out of the hospital and with
those I loved. Moreover, I was happy with my decisions and glad to
feel physically well so soon after the exploratory surgery; I knew my
health would not decline before the holidays, and in this I found
contentment.
In the afternoon I dismissed myself from the festivities so that I
could rest. Shortly after my disappearance, Todd and his wife found
their way upstairs to my room and asked if they could talk to me. They
entered and we discussed my health; I was glad to answer any questions
which might have been forgotten, or otherwise left unanswered. They
then gave me several books, two of which concerned the topic of death,
namely, "On Death and Dying," and "On Dying With Dignity." Todd
quickly made the statement that I didn't have to read them if I didn't
want to, slightly embarrassed by the whole affair. I wasn't offended
by the gifts, but thought them to be rather humorous. I thanked Todd
nevertheless, acknowledging that many people have benefited from
reading those books. I further said that although I felt in no need of
assistance with regard to my handling the disease and eventual death, I
would perhaps read the books simply to see what the doctors had to say
about their keen observances of the dying.
Before our discussion had come to a close my mother came upstairs to
join the group. Todd tried to conceal the books he'd given to me. I
wondered about his effort of secrecy; did he have second thoughts as to
the appropriateness of the gift, or was he concerned about Mom's
reaction? I once again squelched a smile, noting how death is a
characteristically dismal and uncomfortable subject; we all made our
way to the main floor.
The following day everyone was gathering up their belongings for their
journey homeward. As the day progressed and Todd had made no effort to
pack, I became suspicious. He finally voiced the plan that he had in
store for us, that being to talk with the director at the hospice
service. We immediately rejected the idea, saying we had no intention
of utilizing the service at the present time. It was then that he told
us he had actually made an appointment for us, and the director would
be expecting us in a few hours. Since we had first thought the idea
was a mere suggestion, the negative feelings of anger did not surface
until now.
Norm, sensing as I, the trouble which was bound to occur, excused
himself before making a scene. He decided to take a walk to displace
his rage. I firmly told everyone that I was not going; I didn't want
to start digging my grave before my demise, not to mention the fact
that I did not wish to die in the hospital if it could be avoided. But
above all else, it was the principle of the whole affair that set off
my self-protective behavior; I would not have my decisions made for me.
My parents were also angered at the thought of their being entirely
left out of the decision to see this man, multiplied by their lack of
preparation for the discussion which was about to take place. At last,
understanding Todd's concern, they agreed to accompany him. As I
watched them file into the car, I wasn't quite sure if a battle had
been lost or won; perhaps in the forgetting of principle, followed by
the acceptance of the former, no one truly wins.
Letting one be free is sometimes the hardest gift to bestow upon
another person, yet it can be the one of greatest value. Without
personal choice, freedom is but a laughable reality.
Another case which was marked by what I would consider faulty and
injurious judgment involved a couple who had been married for 52 years.
This couple was a classic example of opposing personalities living
together under one roof; she was a rational, mild-mannered lady, while
he was obnoxious in every possible sense of the word, needing to be the
constant attraction and principal authority presiding over any group or
function. He had to have his way or he would make life truly miserable
for the unfortunate individual who attempted to voice an opinion,
carrying out his revenge with cruel indignance.
After suffering what appeared to have been a stroke, the woman was
hospitalized only to discover that a tumor had formed in her brain. It
was evident she would not have long to live, so she decided to forgo
the torture which would accompany chemotherapy, the sole option of
treatment, and explicitly informed her husband of her wishes. As time
passed and her condition grew worse, she eventually lost all ability to
verbally communicate; it was at this point that her husband bid the
doctors to administer chemotherapy, with the supposed hope that she
would regain some of her lost functions. Consciously aware of the
decision which had been made by her husband on her behalf, yet
incapable of voicing her opposition as to its commencement, she was
forced to submit, for the last time, to her husband's self-centered
dominance. He saw in her eyes that she begged to be released from the
treatment, but he played the ignorant fool and watched as she quietly
faded into the obscure limbo of unconsciousness.
All through their life together, until her quiet end, the man thought
only of securing enjoyment for himself. When he felt his well-being
was in danger, he sought only to maintain his happiness, which had
little to do with the welfare of his dying wife. This was apparent in
his total lack of empathy regarding her wishes, and the merciless
ignorance of her speechless plea.
It is difficult for me to believe that such selfish persons exist, for
I hope the vast majority of people will conquer their selfish
tendencies in order to facilitate the desires of their loved one, even
if it shall mean a more rapid decline in health. It is important to
realize that only the patient suffers bodily pain; it is ultimately he
who must undergo the treatment, which could in fact, significantly
alter his overall comfort.
For these combined reasons, I feel it is fair to allow a mentally
intact individual to decide how his remaining days shall he spent; this
is why open conversation among family members is of such great
consequence. When the illness prevents further decisions on the part
of the patient, it is then up to the family to respect his previously
stated wishes and, should further decisions need to be made beyond
those which had been specified, strive to make new options benefit the
patient's comfort. Above all else, kindness should prevail and guide
in the solutions to any questions which might occur concerning the
patient's death. A patient should not be made to suffer through a lack
of acceptance on the part of the family; behavior of this sort not only
uses the dying, it overtly abuses them.
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