I too needed room to breathe, to feel that, even with my severe limitations, I was yet in control of my life. It was important that I knew I could take care of myself if the need would arise.

Guilt may derive from actual wrong-doing on the part of the guilt-ridden as well as the causes described above. Whether spurred from emotional neglect, mental abuse, infidelity, or another source, this guilt is the only type which I feel is worthy of its keeper. When an individual knowingly hurts another, yet makes no attempt to correct himself, the former deserves to feel the grasp of pain. No apology, no matter how magnificent, can take the place of past injustice.

Therefore, while the past is history, perhaps these regrets can best be handled by a silent oath to behave differently on future occasions.

The refusal of friends to face my health situation always brought about a keen sense of frustration on my behalf, modified to a certain extent by pity. It is impossible to attain any depth in such relationships, since continual avoidance of reality cannot be upheld.

One such relationship, in which a friend would not acknowledge the presence of my illness, was eventually transformed into a virtual charade. Conversations revolved solely around trivial matters or reminiscent revelries. Discussions of the present surrounded her doings only, for the least hint of my illness would leave the conversation stunted. Because I never cared to dwell on my ill health, any remark was of the pa.s.sing sort, yet even these seemed too much for her to abide. It was as if the pre-cancerous person was the only "me"

which existed for her; my entire self was no longer acceptable. As no change occurred, our rendezvous became less and less frequent, and eventually subsided altogether. I felt uncomfortable having to hide behind a mask of my former health for my company to be tolerable; it was better to be alone. Friendship must be built upon honesty if its true potential is to be realized.

Frustrating to a lesser degree were those who could withstand a cursory mentioning of my illness, but would then perform a mental backflip and begin discussing another topic as if I had no problem at all. It seemed that their understanding of my health condition was not congruent with the activities which they considered me capable of negotiating. Stifling an open-mouthed, incredulous stare, I would then attempt to explain that I was unfit for that particular suggestion, but perhaps we could find a mutually agreeable alternative. I always tried to coax one's realization of my health situation, rather than attempting to "cram" the truth down uncooperative throats.

It is so difficult for society to abide the thought of terminal illness and death, especially in those we love, and therefore it is often ignored in a conscious effort to prove its nonexistence. Though it is natural to attempt to flee that which seeks to invade one's happiness, running, unfortunately, shall not make the menace disappear; the young are not the only group of people who, when faced with the illness of a loved-one or friend, search desperately for their "running shoes."

While the voicing of feelings is very difficult, it can bring peace of immeasurable degree to yield to their expression; after a loved one dies, one can no longer deny that he was terminally ill, and is left to cope not only with the disease, but with its ultimate effect. Where there might have been memories of a loving farewell, there is emptiness. Just as spoken words cannot be recalled, words which are left unsaid are merely lifeless fragments of conversations which might have been, and forever plague the happiness of the individual who elected silence instead of self-expression.

The utilization of excessive denial toward the fact that a disease is incurable can jeopardize one's time and quality of life. Denial alienates its victims from family and friends. While the patient, or conversely, his relative, continually galavants across the country in search of a miracle drug or pretends the truth shall not come to pa.s.s, lost days can never again be regained. The feeling of hope afforded by such futile excursions and mental conjurings is, I believe, less beneficial than are the quiet and intimate interludes which might have taken their place. The longer one avoids the unfaltering truthfulness of such a situation, the less time he has to enjoy his remaining days in a "normal" fashion.

Unlike certain studies on illness and death, I cannot feel that denial is parallel to hope, nor can I think of the need for hope as a lack of acceptance. As I soon discovered, self-absorption in a traumatic illness eventually becomes monotonous, and one will naturally turn his mind to encompa.s.s other interests. This is perhaps more prominent with extended illness, as the patient and his family pursue routine activities while a "lack" of symptoms permits. Although cancer is definitely part of my life, it is not my whole life. While I have never thought a cure was likely to be discovered, I know there are many involved in cancer research; thus, as I live day to day, a ray of hope shines through a door which is not completely closed. Hope injects an element of pleasure in lives which would otherwise be stagnant reflections of death itself. While there is yet a chance to survive, and discomfort is not the primary essence of each day, one tends to think of life; it is all we, as humans, truly know.

Luckily my family and better friends did not avoid my problem. There were times when we felt pressed to talk, and let go of the tears which were usually held at bay throughout the day. Disappointment and faded dreams stabbed my father through the heart, and he lamented the many sadnesses with an angry vengeance. Mom's aching for that which could not be often liquified into tears. Norm, on one of our walks, would blandly state, "No luck at all . . ." The need to speak, and the responsibility to listen, alternated between us, and strengthened our relationships; the patient is not the only one in need of a tireless ear.

I had to be able to be free to talk and joke of my illness, not hide its existence in the corner of my mind. It was part of my life, becoming as natural as eating and sleeping. Had I been forced to conceal my feelings my life would have been one of loneliness and despair; I would only have been what people wanted to see...

an image, not a real person.

I was alive, housing an alien growth, indeed nurturing it, so that it may fulfill its purpose. To try to impede its fixed intent seemed futile; cancer desired to squeeze life from my body many years ago...

and now it truly appeared that it would succeed. Thus, almost pleased with the belief that my life had found its rut, from which it could not be removed, I wanted to live in a manner conducive to good spirits.

No one, I thought, would interfere with my peace.

PAGE 225

Chapter 27 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 a.s.serting 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 ch.o.r.e 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 att.i.tude 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 t.i.tles 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 a.s.sumptions 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 ma.s.sive 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 ma.s.sive 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 cla.s.sified, 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 a.s.suming 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 a.s.sume 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 ill.u.s.trate 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 pa.s.sing 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 embarra.s.sed 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 a.s.sistance 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.