Category Archives: Early Writings

Of Whistles, Laughter and Unrelenting Agony (1993)

The following essay is another that’s  gotten some mileage.  I wrote it for English 101, published it in the _Sandhill_, USC Sumter’s literary magazine, and later published it in the book _The Marfan Writers’ Anthology_.

            “What’s the whistle for?”  my friend asked.

            “That’s there so I can blow it if I wake up in the middle of the night and I can’t breathe,” I replied.

            “But, John,” he said, already laughing, “If you can’t breathe, how are you going to blow the whistle?”

            The anecdote will probably go into that list of stories which families and friends always remember, enjoying the humor for years to come.  In this case, the story demonstrates how humor is vital in dealing with a terminal illness; how I have learned to counter the all-too serious nature of the situation by making the best of it.  Although we laugh at the brief explanation of why I keep a whistle by my bed, the true reason is much more frightening.

            It would be one thing to say that I suffer insomnia, or that I sleep too much on a standard basis. However, my sleep patterns are unhealthy in their erratic nature.  One night, I may find myself unable to wake, while another night may find me desperate merely to close my eyes.  On the night in question, sleep wasn’t much of a problem.  I wasn’t feeling any more pain than usual, and I was sleeping pretty soundly through most of the night.  When I suddenly woke up, I didn’t quite realize what was going on.  I had a pain in my back, and I was sweating so much that my clothes were wet. 

            After lying in bed for awhile, just trying to get comfortable and to go back to sleep, I finally decided to reach over to my night stand and pick up my glasses.  Straining to see the clock in the darkness, I determined that the time was about 4:00.  I continued to lie in bed for a little longer.  However, I finally decided that the discomfort was too much, and I might as well get up and go lie on the couch (which usually allows me to get back to sleep when I have such nights).  When I pushed the blankets aside and got up, I was terribly cold and could barely move.  I felt as if I were frozen, and my limbs froze with cold.  Giving up, I got back into bed as fast as I could, pulling the covers up over my shoulders and wrapping myself up as tightly as possible.

            After a few more minutes, when I’d felt warm enough to move again, I reached over and began to tap on the wall, hoping that Mom or Dad would hear and come to see what was going on.  Tapping didn’t work, so I kept pounding a little harder, every now and then gasping out a cry that came out like a whisper: “Mom or Dad?”  No answer.  Again, I hit a little harder and cried a little louder.  No answer.  After at least fifteen minutes of this desperate pounding and calling, I decided that there was only one way I could wake them up to free me from my isolation.  All my pain and fear came bursting out in a final, desperate scream.

            Needless to say, before I knew it, Mom and Dad were there, and I was safe.  After a while, the pain gradually subsided, and we were able to sleep soundly once again.

            We never determined what had caused the pain that night, but the importance of the incident lay in the abject terror of being alone, isolated in the unfeeling darkness, feeling such unbelievable pain, and thinking that Hell can’t be much worse than this.  A beautiful feeling of relief comes with freedom from terror’s grasp.  The hope for such release is the only thing that keeps me going.  The whistle embodies that hope.  At least I have some way of keeping contact with the outside world.  At least I have some way of knowing that, should I ever find myself in that situation again, I merely have to blow the whistle and the darkness will be broken by the light of parental love.

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“It’s Not Easy Bein’ Green” 1993

Because I do not hope to turn again

Because I do not hope

Because I do not hope to turn

Desiring this man’s gift and that man’s scope

I no longer strive towards such things

(Why should the aged eagle stretch its wings?)

Why should I mourn

The vanished power of the usual reign?

– T. S. Eliot, “Ash-Wednesday”

I can say from firsthand experience that “different” is a state of mind.  I choose to be different.  I refuse to sacrifice my individuality for the sake of fitting in, because being an individual implies that a person is a member of a group.  I base my interests and tastes on what I enjoy – a philosophy of life which is far more effective than sacrificing my values and pretending to be something I am not.  A real friendship should be based on honesty.  According to C. S. Lewis, friendship arises out of mere companionship when two or more of the companions discover that they have in common some insight which the others do not share and which, till that moment, each believed to be his own unique treasure (or burden)  (The Four Loves).

My music is one good example of my singular tastes.  I listen to what I like, despite what’s popular, and I find that the music I enjoy has a much longer lasting quality than the usual fad.  Sir Andrew Lloyd Webber, for instance, is one of the most talented and successful composers alive today, yet the average person my age hasn’t even heard of him (or at least remembered).  My other favorite, Barry Manilow, is as much a subject of ridicule as I seem to be.  Although classical, Broadway and easy listening may not be typical fare of a teenager’s music collection, the universal quality of the music touches deep into the soul.

My love of music is balanced by the fact that I don’t enjoy sports.  I think it’s boring to sit and watch somebody else play a game when I could be doing a multitude of things which have meaning to me.  Members of my family think I don’t care for sports because I can’t play them.  That’s only partly true.  I don’t resent my limitations; I laugh at them.  If other people enjoy sports, that’s fine with me.  I just don’t want to waste my time being bored and uncomfortable because I don’t have any time to waste.Ã

For that reason, I came to believe that finding people who would accept me as I am would be next to impossible, and I built a shell.  I decided that being alone and free was better than living in slavery to fashion and losing myself in the crowd.  I figured that, if I remain true to myself, finding worthwhile friends wouldn’t be so difficult: they would find me.  I am becoming successful in my quest for individuality  and vindicating myself to those who said I would fail.  I now have friends who accept me as a person, despite my idiosyncrasies.  They understand that the parts make up the whole, and taking away even the slightest touch of my originality would be to take away my soul.A

Above all, my most important rejection of social norms is my strict conservative morality, my belief in the Natural Law, and my traditionalist attitude concerning my Catholic faith.  Finding people who share my beliefs in any one of these areas, much less all three, would be extremely difficult.  To stand up for beliefs and values is a very difficult task in modern society.  Yet, that is the task I have chosen.  This world has nothing to offer me which outweighs the rewards offered in Heaven, so Heaven is more important.  Likewise, I have nothing to lose by making myself out as an example for others, because death is just around the corner, and there is no physical harm greater than that.  If I’m right, I have a place waiting for me in the Father’s Kingdom. If I’m wrong, then my life doesn’t mean anything.ƒ

We are given, by reason of our humanity, unalienable rights to life, liberty, and the pursuit of happiness.  To lose originality is to lose our souls.  We would no longer have any

 art, music or literature, nor would we enjoy what we did have.  Instead, we would have every aspect of our lives controlled by the System, and nothing else would matter.  Individuality is the essence of being human.  Kermit the Frog’s theme song is about being yourself, and not wasting time wishing for another identity.  “It’s not that easy, bein’ green,” and it’s not that easy being a Marfan, “but I think it’s what I want to be.”

“Don’t Cry for My Large Aorta” 1993

Don’t Cry For My Large Aorta

J. C. Hathaway

English 101-001″

Paper of Definition

OOOOOWWWWWW!!!!!

“This won’t be easy; you’ll think it’s strange when I try to explain how I feel,” that Marfan Syndrome is not fun.  In fact, life with Marfan is a life of pain and torment caused by a defect in a single, little gene, located on the fifteenth chromosome, which is responsible for supplying the connective tissues with fibrillin, a protein necessary in the development of connective tissues.  As Marfans grow, their connective tissues become elongated due to a lack of strong fibers.  This weakness is a slow decay of the entire body, although the major trademarks of Marfan are its effects on the eyes, skeleton and heart.°

The most obvious effect of Marfan Syndrome to “normal” humans is found in the multiple eye problems which stem from the disorder.  Marfans tend to be nearsighted; dislocated lenses turn the world into a frightening blur of indistinct images, inaccurate distances, and unidentified personages.  I was legally blind as a child, and my greatest fear is that I will end up in total darkness from retinal detachment.“

An early sign which can be detected before anything else is the malformation of bones.  Marfans can be distinguished by their disproportionately long limbs and digits.  Often, the result of weaker bones is a series of deformities in the ribs, spine and legs.  Lose joints make maneuvering difficult; arthritis makes moving painful.  Teen-agers with Marfan Syndrome are put in difficulty from scoliosis.  This curvature of the spine can be corrected if necessary, bur the result is several months in a body cast.  The pain from these weak joints, dislocations and myriad malformities is easy to handle when compared to the ultimate danger.–

Just as the bones get longer and weaker, the muscles and valves of the heart are stretched out to the point that blood isn’t pumped out, and the entire metabolism is disrupted.  The growth of the aorta, the principal artery of the human body, often results in leakage, aneurysm, and death if not corrected by surgery (which only prolongs the problem).  As the chambers and vessels get weaker from natural growth, the extra blood that collects pushes them even further.  The pressure makes Marfans tire easily, gives them constant pain, and hangs a burden of death on their lives that only people with terminal illnesses can fully comprehend.

Here I am, then, writing this paper, trying to give a clear, objective definition to the agony which I face every day.  This pen is difficult to hold because my fingers are too long and weak.  Every now and then, the images blur from a number of factors.  The problems are plenty, but the solutions are few.

(Quotes in title and opening paragraph taken from Tim Rice’s lyrics to “Don’t Cry For Me, Argentina,” in the Andrew Lloyd Webber opera

Evita.)

A rather old, but still apropros, guest post from my wife

Clinton’s abortion views are clearly contradictory
To the Editor:
In response to your article in the Stafford Neighbors section, “New kids on the political block,” I feel those Democrats, and others like them, must have hypocritical ignorance of their candidates.
I cannot understand how someone who is so concerned about prenatal care and Head Start and who is against the death penalty can at the same time call himself or herself pro-choice, meaning proabortion.
Bill Clinton and Al Gore are supposedly concerned about the future of America, but, hypocritically, they support the murder of the innocents, the children, the future of America.There are organizations to help mother and baby, like Birthright, which is now part of the United Way campaign, and adoption agencies. Instead of spending millions of dollars a year for infanticide, why not spend the money on the mother and her child? I feel we need to spend that money for more organizations like Birthright and Bethany Christian Services.
If one person kills another in the shadows, where they can’t see one another, it’s called murder. But when a woman with a child inside of her, a child she can feel but cannot see, kills the child, or as some put it, exercises her right, it is just a choice, not abortion.
I hope in the future that The Free Lance-Star will cover events like the hundreds of citizens who stood in the rain for three hours to show their love for all people, born and unborn. This event occurred Oct. 4 on U.S. 1.

Mary Hein
Stafford, VA

Letter to the Editor, The Free Lance-Star, Fredericksburg, VA, Thursday, October 22, 1992

My Experiences in Faith–1989

In 1989, when I was a 12 year old 8th grader, I was one of the winners of the SC Lieutenant Governor’s essay contest, and I got to meet and shake the hand of then-Lt. Gov. Nick Theodore (D), a few months after he shook the hand of Barry Manilow, which I thought was really cool at the time, even though Theodore was a Democrat.
The essay was called “My Experiences in Faith.” I revised a few times, this latest version below coming from 1992. Here’s a picture of me with the other winners

I am writing about my personal experiences in faith. I have had a great adventure on this exciting voyage to God. Having the Marfan Syndrome has been a fact since I was age two, so it has always been part of my life, and although I don’t know what life is like for “normal” people, I can’t see my own life without it. Death doesn’t bother me, but I do tend to fear the concept of blindness or deafness that might occur sometime in the future. The LORD has seen fit to give me a wide variety of experiences in the sixteen years I have already lived, and I have already gone through the process of personal development that most people spend their lives on. Sometime around age five, I became an agnostic, doubting God’s existence on the grounds that I couldn’t see Him, when I could see Santa and the Easter Bunny at the Mall (what a Modernist!). At age seven, I was suicidal, tired of being a wimp, and figuring I’d be re-incarnated. Eventually, and with the help of my parents, I got things straightened out and became a good little church-goer. My religious education has been almost entirely self-directed. I spent two years in CCD from First to Second Grade, and then dropped out because I could teach myself just as much at home. I returned again in sixth grade, and didn’t come back after Christmas break for the same reason.

Radical change at various points in my life stirred on a more radical revelation of my place in Mother Church. The most important of these changes is that my family moved to South Carolina, where my life almost instantly and quite unexpectedly took a turn for the better spiritually. I had grown up a member of the Cathedral in my hometown of Erie, Pennsylvania, and I long had a fascination with the Church, which to me was mysterious and full of ceremony. Everything at the Cathedral was much like it would have been a hundred years ago, save the fact that the language was changed to English from Latin. There were beautiful and solemn hymns played on the pipe organ. The church itself was dark, with light coming from the small ceiling lights up in the dome, and the torch-like lamps that hung from the rafters. The Mass was begun and ended with a long procession. There would often be at least two priests at Mass, one to say Mass, the other to read the Gospel and preach.

When we moved to South Carolina, I began to develop a spiritual side that I had only known very lightly before. A week after arriving to live in Sumter, I took an interest in the Rosary. I started to read religious books, including the Bible, and I began to go to daily Mass. I started to find religious meanings in books, television programs, movies, and songs. I became familiar with the divisions among Christianity, and spent my first year in Carolina (1988-1989) at a fundamentalist academy where I learned Protestant theology, and where my father (who taught there) and I, in conjunction with our dynamic pastor, introduced the school to Catholicism. I then spent a year at a public school, where I openly spoke out for the Church, despite any fear of persecution, and found none. Rather, in both cases, I found several people who were “closet Catholics” and brought non-Catholics to abandon old prejudices.

In February 1989, my grandma called from Erie, and told us that Grandpa had cancer. I began to pray constantly for Grandpa, whose health had become the main concern of my family. We spent our Easter vacation in Erie, because the situation looked grim, and that might have been our last chance to see Grandpa alive. We decided that all we could do to help was to bring Grandma and Grandpa back to Sumter so that Grandpa could enjoy what little time he had left. The days they spent here were filled with joy, and I spent as much time as possible with them, walking, talking, praying, and just sitting out back enjoying the weather. Grandpa got somewhat better, and they returned to Erie on May 18. At about the same time as they left, I began to have a series of problems related to my Marfan Syndrome, which began with back pain and the start of scoliosis. I spent the summer in pain. Soon after my back problems settled to a natural thing, I began to have heart problems, and was almost constantly visiting doctors and hospitals. The prayer list increased, and everyone was offering support to Grandpa and I in our times of trial. Prayers were answered, as Grandpa’s condition stabilized, and I overcame the period of suffering, although I ended up on a reduced workload at school. We went to Erie at every available occasion, finally returning over Easter 1990 to see Grandpa for the last time on Earth. All I wanted to do, I said, was to say one last Rosary. We got to Erie, and quickly worked our way through the house to Grandpa’s room. The first thing we did after saying “hello” was kneel down, and say a Rosary together at Grandpa’s bedside. He was semi-conscious throughout the day, and eventually went into a coma. For the next few days, we kept vigil, and he awoke occasionally. On Palm Sunday, in the early evening, after everyone had gone home for a while (for the first time since our arrival) and the only people in the house were myself, my parents, my grandparents, my uncle, and my great-aunt, Grandpa awoke for the last time. When I heard him moan, I knew that this was the Moment we had waited for. A very spiritual moment saw the passing of Grandpa into the next world, and I will never forget the feeling that evening. The next few days were a time of mourning for most, but I found myself experiencing what C. S. Lewis called Joy. I was in a great communion with God, and it was a time of happiness in a deeper sense. When I was in Ninth Grade, to add to the problems our family faced, my mother’s health problems, which had grown gradually over the past few years, were diagnosed as Multiple Sclerosis. We were now a family suffering great illness, and offering it up to the LORD.

All the while, as this went on, my faith deepened, and I came to a close relationship with God. In my high school years, I attended St. Jude Central High School in Sumter, where I encountered many people of deep faith and religious convictions, and where the influence of the experiences that my well-rounded teachers brought to us each day in class greatly affected my outlook on the world. I came to meet several very caring people, and some wonderful priests with a deep faith. As I noted before, my religious education was mostly individual. Three years of high school religion were about the best formal religious education I’ve received. I went to two classes for Confirmation, but ended up asking for (and receiving) an individual Confirmation at the Cathedral of St. John the Baptist in Charleston by the Most Rev. David B. Thompson, who served as another inspiration and in whom I saw a truly great Christian leader. I achieved a better level of religious thought through reading the works of such as C. S. Lewis, Thomas Merton, St. Augustine, T. S. Eliot, and many others whose religious writings have impacted my very way of being. I have studied the messages of several great devotions, such as the Infant Jesus of Prague, Our Lady of Lourdes, Our Lady of Fatima, the Sacred and Immaculate Hearts, and the lives of the Saints. All this has been tied together by an avid interest in the official practices, beliefs and traditions of the Holy Catholic Apostolic Roman Church.

Misfortune after misfortune compiled the sufferings that we underwent. Over the years, we’ve gone through a lot, yet our faith is stronger. My health has not gotten any better over the years. I would get a few months where I am overwhelmed with pain, then I got a few months of relief, and back again. Now, the pain is almost constant, and whether I feel “good” is a matter of how I feel at that given moment. I know that it is my Cross to bear and the “whip” that God uses to keep me “in line”. I also know that I have to accomplish my work in this world as soon as possible, because I don’t know when I will be taken to the Next, but my life isn’t going to be a very long one. Therefore, I write these papers as a document to one young man’s dream of a world where Christ’s sacrifice comes to mean something in the minds and hearts of all men and women; where the Holy Church stands as a binding institution of all races and cultures, and where we live in peace and harmony with our God, His Mother, the Angels and the Saints.