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.