Born in the U.S.A.

Stevie Rhodes with Santa, 1962

September 30, 2014

Dear Constant Readers,

This is the third installment in a new series of posts which I hope will form the first draft of a book.  The working title for this book is, "Confessions of a Second Grade Failure."  It is a coming-of-age memoir about growing up in Kingsport, Tennessee during the 1960s and early 1970s.

And don't forget - if you subscribe to receive my blog posts by email before October 15, you will automatically be registered in a contest to win a new Kindle reader from Amazon.  For more details about the contest and how to subscribe, please read this post.

Cheers,

Steve

_______________

Confessions of a Second Grade Failure

Born in the U.S.A.

Kingsport, my home town, was built in the river valley of the Holston in Northeastern Tennessee. It is surrounded on all sides with green mountains and rolling hills - some of the most beautiful country God ever made. It was a planned industrial city that was both in, but not always of, Appalachia. Our small city’s skyline is filled with smokestacks and church steeples, symbolizing both the progressive business and civic spirit of the community, as well as the conservative religious pillars upon which it was first conceived.

I had the good fortune of growing up there in the 1960s and early 1970s as a child. That period of time was a turbulent era for our nation, and many of the social, political and cultural issues were also experienced in my town as well. We were not isolated from the many changes that were occurring in the rest of the country.

I remember cousins who worried about their draft status and whether they would be called up to serve in Vietnam. I also remember watching the evening news with my parents and Walter Cronkite announcing the numbers of war casualties each day.

I remember when some of the mothers and women in our neighbor chose to work outside the home,

while others chose a more traditional role, and the tensions these decisions caused within families and between neighbors.

I remember our nearly all-white town, beginning the process of racial integration in the school system in 1965, and how it took until 1972 for my own elementary school to admit the first black students.

I remember hearing about the growing national awareness of income disparity and the high poverty rate in the region where I lived - Appalachia. And watching TV shows like “The Beverly Hillbillies,” and thinking that, while funny, they didn't look or sound like anyone I knew from Tennessee or Virginia.

And during this period, I remember that as concerns about the environment rose to national consciousness, we had our own debates and discussions about the polluted air and water of our own fair city. In addition to our skyline of smokestacks and steeples, there was the ever-present smog which hung over Kingsport. Our town even had it’s own distinctive odor. The running joke in our town was this smell was “the smell of money being made.”

So, no, Kingsport was not isolated from the cultural shifts of our nation. Many of these issues would directly impact my own life and the lives of family and friends in those years and the years to come. As important as these issues were, I must confess that in the first thirteen years of my life, I tended to focus on other things.

When I think about growing up in Kingsport during the decade of the 1960s, I imagine living in a town not unlike Andy Griffith's Mayberry, filled with small businesses that like it’s main street and was a place where everyone knew their neighbors and other townsfolk. Or I would think it was like living in the endearing town of Bedford Falls in “It’s a Wonderful Life.” As a little kid, I could think of nowhere better to grow up. In so many ways, my early life seemed idyllic.

My memories of childhood are filled with images like my dad holding me on his shoulders so that I could see the Christmas parade as it came down Broad Street, and watching especially for Santa who arrived in town riding in his very own train car on the Clinchfield Railroad.

I remember our annual family trip to the Christmas tree lot run by the Kingsport Optimist Club. My best

Judy Huddleston and Stevie Rhodes

friend and neighbor during childhood was Judy Huddleston.  Her father, Ward, was an Optimist and worked the lot, always helping us pick out the perfect tree.

I remember standing with my parents on Memorial Boulevard watching our city's other annual parade which was held on the Fourth of July. I loved to watch the Shriners wearing their Pez hats, riding around in their tiny automobiles and their clown car. I loved listening to the local high school band as they passed by. And you could always count on seeing our congressman, Jimmy Quillen, riding in an open convertible, waving to his constituents, who kept sending back to Congress, session after session, for over 30 years.

I remember going to the carnival which was held about the same time of year as the Fourth of July

parade. It was sponsored and organized by the local American Legion. My uncle, who was both a veteran and a member of the Legion, always worked the carnival, selling tickets to the many rides. Often my friend, Judy, would go with me to the carnival so that I would have someone my own age to ride with on the amusement attractions.

I remember how summers in Kingsport were filled with fun things to do. David Merrill, another close friend and neighbor, and I would hike down to the creek that ran by our subdivision. There we would spend afternoons looking for and trying to catch crawdads, tadpoles, and box turtles. My friends and I would spend time at our neighborhood pool swimming, or else go to the American Legion pool, which was operated by the city. My friends and I also would go to see the latest Disney movie which would be showing at one of the two downtown theaters, the State and the Strand. We would go to the children’s matinee, which also featured cartoon shorts before the actual movie. And in the summer evenings, my pals and I would spend our time either playing flashlight tag or catching fireflies, putting them in canning jars with the tops poked full of holes for air.

I also remember how much I loved going downtown with my parents. My mom would frequently take me to Freel's Drugstore on the corner of Broad and Center streets. They had a lunch counter where we would eat. My favorite order was a grilled pimento cheese sandwich with crispy lettuce. I would wash my sandwich down with a cold glass of cherry Coke. It was different than the Cherry Coke which is sold now. The waitress would first pour the Coke into the glass from the soda fountain and then she would squirt cherry-flavored syrup into it and stir. Boy howdy, did that ever taste good. This lunch at Freels was often a bribe from my mother so that I wouldn't make a fuss when she shopped at Nettie Lee, a woman's clothing store, just down the street. Trips to town with my dad always meant stopping at Wallace Newsstand on the corner of Broad and Market streets. From a block away you could smell the freshly popped popcorn that they sold. Dad would peruse the latest papers and magazines. While he thumbed through the latest issue of Popular Mechanics, I would rush to the back of the store where the comic books were kept, picking out two or three that my dad would buy for me.

For me, memories like these define the years of my childhood. I was not alone in this experience of Kingsport. In fact, this sense of community and civic-mindedness was first touted by J. Fred Johnson, one of our town’s founders, as the “Kingsport Spirit.” From the city fathers’ perspectives, Kingsport was created to be a special place.

(More about the history of Kingsport tomorrow!)

Reaching New Readers... Can We Have 200 By Oct. 15? 300?

September 27, 2014

Dear Constant Readers,

Just a brief reminder, I'm hosting a contest to win a new Kindle reader from Amazon this month.  The contest began on September 15 and will end on October 15.  The way that this contest works is that anyone who registers to receive my blog posts by email during this time period will be automatically be registered.  That's all you need to do.  Very simple!  And even if you don't win the Kindle, you'll still get wonderful blog posts delivered to your email inbox when they are published.

Now for those who are already registered (before September 15), there is a second contest to win a $25 gift certificate for Amazon.  (By the way, the gifts are all from me - Amazon is not sponsoring or underwriting this contest - FYI.)  To qualify, you just need to recommend this blog to a new reader who subscribes to receive the posts.

As of today, we have 165 subscribers for "One Writer's Life"  - that's 165 people who read this blog by email.  Can we make that 200 reader subscriptions by October 15?  What about 300 readers?

For more details about this contest and how to qualify for the gifts, please read this post.

Thanks for your help increasing the audience for this blog and for your support for my writing in general!

Cheers,

Stephen

A Boy Named Khrushchev

Stevie Rhodes as an infant in 1960

September 25, 2014

Dear Constant Readers,

This is the second installment in a new series of posts which I hope will form the first draft of a book.  The working title for this book is, "Confessions of a Second Grade Failure."  It is a coming-of-age memoir about growing up in Kingsport, Tennessee during the 1960s and early 1970s.

And don't forget - if you subscribe to receive my blog posts by email before October 15, you will automatically be registered in a contest to win a new Kindle reader from Amazon.  For more details about the contest and how to subscribe, please read this post.

Cheers,

Stephen

_______________

Confessions of a Second Grade Failure

A Boy Named Khrushchev

On Thursday, April 21, 1960, I made my grand appearance into the world with a little help from Dr. Christiansen at Holston Valley Community Hospital in Kingsport, Tennessee.  I weighed in a little over six pounds and was noticeably absent any hair on my rather large head.  My parents were Jim and Charlotte Rhodes.  Dad was an electronic engineer at Sperry Farragut in Bristol, and Mom was a former bookkeeper turned full-time housewife.  They had been married just under three years when I came along.  I was their first child.

I was born into a large extended family of two grandmothers, umpteen uncles and aunts, and a bajillion cousins most of whom lived in Kingsport, or nearby in southwest Virginia.  And then there was the Texas branch of my mother's family, but more about them later.

The name my parents gave me was Steven Andrew Rhodes, after no one in particular - they just liked the two names.  "Steven" was a popular name at the time.  From 1955-61, Steven was in the top ten names bestowed upon infant boys in the United States.  But from earliest memory, I did not like this spelling, no matter its popularity.  Almost from the moment I learned to write, I spelled my name as "Stephen," not "Steven."  "Steven" just looked so boring as I wrote it out, so uninteresting.  But the added "ph" in my name, at least to me, made it appear more exotic, more substantial.  And according to my teachers in Sunday School, a man named Stephen in the Bible was the first Christian to be martyred for his faith.  So, yes, "Stephen" would do nicely.  So from that time since, I have gone, not by my given spelling, but the one of my own choosing.

One name over which I had no control whatsoever was the one that people actually called me.  In retrospect, I would have been okay with "Steven" even with it's mundane spelling.  "Steve" would also have been perfectly acceptable.  But no, almost from the beginning of my existence I was called "Stevie," and worse yet, "Little Stevie."  It is a moniker that follows me to this day.  When I talk to my cousins or to a friend from my hometown, I am still greeted with "Stevie."  Well, at least I can be thankful that no one calls me "Little Stevie" any more.

Another nickname that I was given early on by my uncle, Karl Hale, my mom's older brother, was one

Kanamit, the space alien

that was at least interesting, if not somewhat unique.  As I mentioned previously, I was bald at birth - not a hair on my head.  This, in and of itself, is not unusual.  Many babies come into this world bald.  What set me apart was that months and months went by before any hair began to emerge on my noggin.  To make matters worse, I was born with a rather large head for my overall size.  Everyone commented on what a big head I had.  A few would even later suggest that as a baby I looked somewhat like that alien in The Twilight Zone episode, "To Serve Man."  To be honest, my head wasn't abnormally gigantic - just a little larger than your average infant.  My mother became a little defensive about it, at which point my grandmother, Cora Hale, rallied to my defense.  She responded to such comments about my gargantuan noodle with aplomb and grace: "Why darling, didn't you know that God had to give Little Stevie a larger lead because of all the brains He gave that boy."  God bless her heart.  My nickname would have been "Big Head" if not for her.  From that time on she continued to insist that the jellied mass inside my cranium was just a little bit larger than average folks, so I shouldn't be ashamed of my hat size.

Well, back to my Uncle Karl.  He took notice of my hairless head sometime in the fall of 1960.  He just knew that my handsome profile reminded him of someone he had known or seen, but he just couldn't put his finger on it.  About this time I was learning to eat my food while sitting in a high chair.  Family lore has it that I had quite some appetite.  When I didn't get enough to eat, or if my mother was engaged in conversation with someone else and slow to feed my gaping maw of a mouth, I would begin to bang on the high chair table with my hands, my plate, or anything else I could readily grasp.  I would pound away until I got her attention and my feeding resumed.  So one day, when Uncle Karl and his wife, Loretta, were visiting, my hunger flared and my hands began to bang upon the table.  Uncle Karl's eye grew wide and then he cried out, "That's it!  I know who Little Stevie reminds me of - it's that dadburned communist, Khrushchev!"

Nikita Khrushchev at the United Nations

In early October of 1960, Nikita Khrushchev, the Soviet Premier, while visiting the United States made quite a spectacle of himself at the United Nations General Assembly.  Following a couple of speeches which were reportedly anti-Soviet, Khrushchev took off one of his shoes and began to bang away on the desk where the Soviet delegation was seated.  This infamous "shoe-banging incident" was all over the news, and Uncle Karl had taken notice.  And here I was, with a head as bare as my behind, sitting in my high chair, banging my little fists, food flying everywhere when Uncle Karl had his epiphany.  I looked and acted like a miniature of the leader of the communist world.  So, from that day on - until the day he died - Uncle Karl called me, "Khrushchev."  And the name stuck!

Confessions of a Second Grade Failure: A Prologue

Stephen A. "Stevie" Rhodes, age 8

September 23, 2014

Dear Constant Readers,

As promised, today begins a new series of posts which I hope will form the first draft of a book.  The working title for this book is, "Confessions of a Second Grade Failure."  It is a coming-of-age memoir about growing up in Kingsport, Tennessee during the 1960s and early 1970s.

Today's installment is the prologue which sets up the story.  I hope you enjoy it and will leave comments and feedback.

And don't forget - if you subscribe to receive my blog posts by email before October 15, you will automatically be registered in a contest to win a new Kindle reader from Amazon.  For more details about the contest and how to subscribe, please read this post.

Cheers,

Stephen

_______________

Confessions of a Second Grade Failure

Prologue

It was the Tuesday following Labor Day, September 3, 1968 - the first day of a new school year. It was also Promotion Day, when tradition dictated pupils were elevated to the next grade in elementary school. The students of Mrs. Williams’ second grade class were all gathered in her classroom. Each was seated in his or her familiar desks from the previous year.

A little red-headed boy was in his old desk. Dressed in a blue and white striped knit shirt, crisp blue jeans and Keds sneakers - all newly bought the previous week by his mother at the J.C. Penny’s downtown on Broad Street. The boy’s hair was cut short, but with enough on top for a slight comb over. His burgundy faux-leather briefcase sat next to his desk near his feet. In it were his No. 2 lead pencils, extra eraser heads, a ruler, a blue cloth-covered three-ring binder, and 100 pages of lined paper which had been manufactured at the local Mead paper plant, not far from the school itself.

While his classmates around him talked to each other about how they spent their summer - where they

had gone on vacation and how excited they were about going to the third grade - the little boy sat quietly, lost in thought. Unlike his friends, the emotion that he felt at that moment was not excitement, but anxiety.

Here he was sitting with all his classmates as if nothing had changed. Maybe he had imagined it all. Maybe his sense of dread was needless. No one had said anything to him directly about what had happened at the end of the last year - especially not his teacher, Mrs. Williams. What if opinions had changed in the last three months, decisions altered? If his foretold fate was still happening, wouldn't someone have said something to him by now? But here he was in his old classroom with all his friends on Promotion Day, and everything seemed so normal.

Mrs. Williams stood beside her desk and called the class to order. She welcomed them all back to Andrew Jackson Elementary School for a new year. She talked about how grateful she felt to have had them as students the previous year. But a new school year was about saying goodbye to what was past and to ready oneself for a new beginning - a new grade.

When Mrs. Williams had concluded her remarks, she asked the class to stand, placing hands over our

hearts, reciting together “The Pledge of Allegiance” as they faced the flag near the door.

With that Mrs. Williams gave the class instructions on how they would proceed to their new class. The first row of students would gather their things and would form a single file line. The second row would follow them with each row following in turn. She told them that they must stay quiet while in line as they made their way through the halls of the school.

Silently, the students walked through the school’s red brick corridors. Their journey wasn't far. In a moment or two, Mrs. Williams stood at a open door. She knocked on the door frame and asked the teacher within if she was ready to receive her new students. With that, the expectant students began to file into their new classroom. One by one, they crossed the threshold, thus passing from the second grade into third.

The red-headed boy was last in line. His heart began to beat faster. Yes, maybe it had been a terrible mistake. He was in line, wasn’t he? And the line of students were all walking into a new classroom. Maybe he had worried himself needlessly. When it was his turn to walk into the class however, Mrs. Williams held out her hand as if she were a crossing guard motioning for traffic to come to a halt. The boy stopped. Mrs. Williams looked at him as kindly as she could. She then said, “Not you, Stevie. You are going to another class, remember?” The red-headed boy dropped his head slightly so that he wouldn't have to meet her eyes. He nodded obediently. His chin trembled slightly, but he held back the tears. Mrs. Williams then commanded him, “Follow me.” And so he did.

And Now For Something Completely Different...

September 22, 2014

Dear Constant Readers,

As the comedy troupe, Monty Python, liked to say, "And now for something completely different."  As with Monty Python, so it is with this "One Writer's Life."  It's time for something completely different!

As you know, for the past several posts I have been focusing upon my life with Chronic Fatigue Syndrome.  And while I do intend to revisit this topic in the future, I feel that is time to shift the focus of this blog somewhat.

In a post earlier this year, I mentioned that I am working on two different books.  Both of these books are memoirs.  One is a spiritual memoir about the past 13 years of living with Chronic Fatigue Syndrome.  It is tentatively entitled, "The Reluctant Ascetic: A Journey Through the Desert of Chronic Illness."  The four blog posts, "My Very Own Personal Apocalypse," may well form the first chapter of this work.

The other book that I am working on is about my own coming-of-age story set in the 1960s and early 1970s in Kingsport, Tennessee - my hometown.  The working title for this memoir is, "The Confessions of a Second Grade Failure."

I have spoken to one literary agent in New York who is interested in both books.  She has requested an outline of the book on chronic illness and the first 100-pages of my coming-of-age memoir.  While I am both honored and excited about her interest, I realize that I need some help in amassing the materials she has requested.  Specifically, I need your (the constant readers) help!

How can you help, you might ask.  The answer is - by serving as my designated readers as I go about writing those first 100-pages of my book on growing up in Kingsport.  Every writer needs someone in mind who serves as the "ideal reader" when writing.  I would like you, constant readers, to serve in this capacity for me.

Here is what I propose: Beginning this week, my blog posts for the next month or so will serve as

potential chapters in progress.  While I do have a chapter outline, my posts may not necessarily follow that outline to the "t."  Though my intention is to begin somewhat chronologically, I rather doubt that my writing will continue that way for long.  So be prepared as I jump around a bit in my own life story.  Just so you know, the period of time that I am covering is 1960-1973.  If this is to work, I need the flexibility to go with those topics (and potential chapters) that are freshest and for which I am most prepared to write.

So, as the Bible says, "gird your loins!"  In other words, buckle up and get ready for a rollercoaster of a ride in the next month or two.  I have a pretty good idea of where we are going together, but the map that I am following is not altogether clear and the directions somewhat hazy.  But if you stick with me, offering me occasional words of encouragement and sometimes even giving me actual feedback, I promise you that at least you won't be bored!

So how about it?  Are you with me?  If so, then let's get this ride cranked up and raring to go.  Let's get this book written!

Cheers,

Stephen

Some Things I Have Learned From and About Chronic Fatigue Syndrome

September 19, 2014

Dear friends, family and constant readers,

I thought I would wrap up my recent writing on chronic illness with some things that I have learned in the last 13 years from my struggle with Chronic Fatigue Syndrome, or have learned about the nature of the illness itself.  This is not an all inclusive list - merely some gleanings or insights that have been important to me in managing my illness.  So without any further adieu, my list:

* Modern medicine doesn't know everything

As I reflect on my own attitudes toward the medical community when I first became ill, I recognize a certain naivete that was present on my part.  I held doctors in great esteem, and their knowledge of the human body and what ails it as vastly superior to my own.  There was a clear hierarchical relationship which I presumed.  When you are sick, you go to the all-knowing doctor who provides you with an answer as to what is making you ill, then gives you a prescription for medication that will make you well.  While I still respect doctors and specialists, and continue to hold them in esteem for the work that they do, I have nonetheless taken them off the pedestal upon which I had placed them and see them as I do the rest of us - very human, skilled but not all knowing and sometimes fallible.  Because of my personal experience, I view modern medicine and its technology as still insufficient and, at times, rudimentary and primitive at best.  There are still so many illnesses and diseases which exist that even the most skilled and knowledgeable doctor doesn't have a clue about how to diagnosis, treat or potentially cure.  As one of my doctors put it, "Even the most modern of medical technology has not caught up with some illnesses, leaving us to grope in the dark at present."  In some respects, I wonder if our descendants will look back at many of our treatments for certain illnesses with the same distain that we have for the bloodletters of the 18th Century and before.  That said, I am glad that I have the doctors I have.  I do believe that I am receiving the best the medical community has to offer.  The problem is, that in my case, the best is still not good enough.

* No two cases of CFS are the same

Technically, Chronic Fatigue Syndrome is not a specific illness.  It is a "syndrome."  This means that it is a medical catch-all for something not otherwise diagnosable.  As a syndrome, it is merely a collection of related symptoms which occur together in a non-random way.  This is one reason that it took me just over a year to be diagnosed - and why it takes other people many years to be diagnosed correctly.  I had a variety of symptoms that fit quite a number of other illnesses.  Those other illnesses had to be excluded by medical testing.  Once those other illnesses were ruled out, only then could I be positively diagnosed as having Chronic Fatigue.  Therefore what makes me a CFS patient is that I experience a cluster of symptoms which are very similar to other people also diagnosed with this disease.  But there is yet another complication - CFS does not present exactly the same in any two given patients.  We may have overlapping symptoms, but the way that CFS affects us would be unique to each.  Therefore the treatment plan will differ with each patient.  That is why it is very important that I work closely with my doctors and that I understand what is going on in my own body.

* Routine is my friend

If you were to live in my house shoes for more than a day, you would probably find yourself extremely bored.  That's because most of my days look very much alike.  I have discovered in the self-management of my illness that routine is very important to maintaining my health and general well-being.  If there is too much chaos or change, I just don't do well.  It's not an emotional reaction, but a physical one.  My symptoms worsen and I am overwhelmed by fatigue, making it necessary to spend a great deal more time in bed resting - something I really don't like to do.  So to avoid this, I stress routine.  I get up about the same time each day, eat at similar times with similar foods, take naps approximately at the same times, and go to bed roughly at the same time each night.  It's boring, but it works.  I have a semblance of a "normal" life when I maintain my routine.  When I can't or don't maintain this necessary routine, my life and health tend to spiral out of control.

* Just because I look good doesn't mean that I feel good

People with CFS are often told how good they look.  The assumption is that if you look good, then you must feel good and therefore are growing more healthy.  Nothing can be further from the truth.  As a person with CFS, I can rise to the occasion and pull myself together so that I appear rather healthy, but that doesn't mean that I am.  I am not healthy.  I am a person with a chronic and long-lasting disease that has ravaged my body and life.  People tend not to see those times when the bottom has fallen out of my life and when the illness is at its worst.  The reason that folks don't see me like that is because I don't let them.  I cloister myself at home, take care of myself and try to feel better until I return to a more even keel.

* Listen to my body

Since onset of CFS, I have become very good at reading and listening to my own body.  If I don't, who will?  I need to be aware of what I am feeling and experiencing so that I can deal with it before it deals with me.  For example, I notice that when I feel suddenly bored - unable to watch TV, read a book, surf the web, or write - that I am just very tired.  If I continue in my activities, the boredom and fatigue only worsen.  Therefore, when I feel boredom coming on, I recuse myself from whatever I am doing and go lie down.  That may be taking a nap or just resting until I am somewhat refreshed.  Once rested, I can resume my activities most of the time.  Another example is when I have cognitive issues.  I call these moments as having "brain fog."  I just can't think clearly and my decision-making is impaired.  The only recourse is rest.

* Get adequate sleep

One of the central issues of people with CFS is that the rest we do get is unrefreshing.  We may get 8 hours on a given night, but we may awaken feeling as though we haven't slept at all.  Getting the right kind of rest and sleep is absolutely essential to me.  Sleep disorders have plagued me since the beginning of my illness.  There have been times of way too much sleeping.  And times of way too little.  And even when I got the correct amount of sleep, it wasn't of the refreshing variety.  So I have worked with my doctors to achieve as restful a night as I can.  With the help of sleep medication, good ear plugs, a good pillow and proper mattress, and generally maintaining good sleep hygiene (i.e., no TV in the bedroom before sleep), I have been able to achieve a relatively deep level of sleep and rest much better than in the past.  It's a tricky thing to do, but is so important to how I feel the next day.

* Avoid stress

Any kind of stress - be it physical or emotional - can be a trigger for my CFS symptoms to flare.  My routine often protects me from stressors, but only so much.  I must constantly evaluate whether something - an event or activity - will cause undo stress and make me sicker.  Prevention is the key for me.

* Engage in moderate exercise

I confess that I live a very sedentary lifestyle.  I know that it is not good for me and that the long-term consequences may be very detrimental.  But the fact is that physical exertion can also be a trigger for CFS.  If I over-do-it with my activity, I can relapse quickly and be out of it for several days.  I realize that for my long-term well-being, I must stay as active as I can, but as in all things - with moderation.  If I feel up to it, I may walk around the block on a given day - or if I'm feeling really good, I may walk three or four blocks.  The length of my walk is not the measure of success, but the fact that I am able to get outside and walk at all.

* Stay healthy otherwise

Having one chronic illness doesn't mean that you are immune from other diseases.  In fact, having CFS may highly increase the chances of getting other co-morbid illnesses.  I know this because it has happened to me.  Because I have to deal with CFS and other medical complications, I must work to stay as healthy as I can otherwise.  I take the flu shot every fall.  I've had the vaccine for pneumonia.  I now eat very well and nutritiously.  I walk as I am able.  I go to my doctors at least every three months to be evaluated.  I take prevention very seriously.

* Alone, but not lonely

Community and friendship is important to any person with a chronic illness.  I can joyfully say that I have a number of important friendships in my life.  My connection with these persons is absolutely necessary for me to cope with living in illness.  Because of the nature of my illness, I am alone a great deal of each day.  I may go two or three days without seeing another human being, save my wife, Lynn.  Living that kind of life can be depressing in and of itself.  I have always needed people in my life, especially so now.  But I need people who can accept me with my illness as a factor in our friendship.  It was disappointing to me that a number of people whom I considered close friends disappeared from my life after I became ill.  I can only hazard a guess, but I believe that they were uncomfortable with my illness and were at a loss to know how to talk to me and sustain our friendship.  I can understand what they might have experienced, but I wish that they had stuck with me despite the awkwardness.  I could have really used their love and support.  But as I said, I still have quite a few friends who have indeed stuck by me through this awful and debilitating illness.  Each day I am grateful to have them in my life.

* Keep mentally stimulated

Because CFS has a detrimental effect on cognition, I must stay as mentally stimulated as possible.  I frequently find this in good conversations with others, challenging reading, maintain interesting hobbies and activities, writing these blog posts.  These sorts of things challenge me and also enable me to have the semblance of a normal life.

*  Be an active patient, not a passive one

I cannot stress it enough - be your own best advocate.  Take ownership of your health care.  Work with your doctors as a partner in seeking what is best for you.  Do not be passive or assume that because someone has a "Dr." in front of his/her name, that they have all the expertise and knowledge.  You must be the expert on your own life and health!

* Be flexible in planning ahead

As I mentioned earlier, routine is my friend - but that doesn't mean that I don't want to engage in special activities outside of that routine.  For example, I recently went to my 35th high school reunion.  It was important for me to go, but I knew that I had to plan ahead or else my symptoms would spiral out of control.  So I factored in appropriate time for naps.  I adjusted my medication times so that I could function at certain events.  Because I planned ahead, I ended up having a great time and enjoyed my visits with people I have known since elementary school.

Well, that's all the insight I have to offer for today.  I hope that this post, as well as my recent series on CFS, has been helpful to you in understanding what it is like to have a chronic and long-term illness.

To Learn More About Chronic Fatigue Syndrome, check out:

The Center for Disease Control - CFS

The Mayo Clinic - CFS

Solve ME/CFS Initiative

If you have questions about Chronic Fatigue Syndrome or my experience of it, please don't hesitate to contact me!  Also, be sure to leave a comment on the blog's homepage at the end of this post.  I truly value and desire feedback!

And please remember to register for the Kindle contest going on this month.  A new Kindle will be given to an individual from among those who subscribe to this blog via email during the course of this month (September 15-October 15).  Also, for currently subscribed readers, there is a contest to win a $25 Amazon gift certificate for encouraging new readers to subscribe.  For more information and details about how the contest works, see this posting.

Cheers,

Stephen

My Very Own Personal Apocalypse: Conclusion

September 17, 2014

Dear patient readers,

In Part 1 of this essay, "My Very Own Personal Apocalypse," I shared the story of when I became sick with a mysterious illness and how it changed my life.  In Part 2 and Part 3, I shared with you the journey from becoming ill through the confusing search for a proper diagnosis.  In this concluding post, I describe exactly I came to be diagnosed with Chronic Fatigue Syndrome.

I came back to Richmond in late November 2002 from yet another trip to Kingsport, Tennessee, overseeing my father's estate.  Because of the stress of my father's death and being appointed executor of his estate, I was extremely ill and knew that I had to find a specialist who could finally help me.  I sat at my desk in my home office combing through all my own research that I had been collecting for the past year.  I had newspaper clippings and internet articles about anything that might tangentially relate to my illness or to the symptoms I was experiencing.  I was looking for a connection that might help me know who to contact at Johns Hopkins or Duke.  I remember pulling a series of articles on the anthrax attacks from September and October of 2001.  If you will recall, following the events of 9/11, a series of anthrax-laced letters were sent to several prominent people.  The letters were processed through a post office sorting center in Washington, D.C.  As a result of the attack, five people were killed and 17 others were infected with anthrax.  The Washington Post covered the story and the effects on the victims both initially when it happened, but also through follow-up stories over the course of the year.  My main interest in this terrible tragedy was the striking similarities between many of my symptoms and those of the anthrax victims.  In the fall of 2002, there were a series of stories in The Washington Post about how the survivors of the attack were not getting well.  Their symptoms lingered and even worsened.  I wondered if there might be a connection to my illness.

While it may now seem somewhat paranoid, I felt at the time that I couldn't rule any possibility out.  In the

Anthrax spores

next day or so, I began to research whether it was even remotely possible for me to have been infected with anthrax spores.  I hadn't been to D.C. in some time, so proximity was ruled out.  I didn't work at the post office sorting center, either.  Could it have been possible that I had received mail contaminated with anthrax, I wondered to myself.  I remember the panic of the news media in the fall of 2001.  There was talk that the anthrax may have been militarized (it had not) and whether even a few spores could infect a person.  However unlikely this scenario, I had to know whether there was any possibility that I had been infected.  I went to see the post master at our local post office.  I explained my situation in brief and then asked him whether any of the mail which had been sorted in D.C. could have come to Richmond - and more specifically, to my mailbox.  He said that it was certainly possible.  His post office routinely received mail from the affected facility, and mail was sent out from that facility before the anthrax was detected.  But, he concluded, he felt it highly unlikely that scenario happened.  Possible, but not probable.

I returned to my research at home, reading the newspaper articles more closely.  A particular doctor was mentioned in a number of the articles.  One article, in particular, stood out.  This doctor had treated a postal worker who showed every symptom of anthrax poisoning, but all the tests read negative for anthrax infection.  He clearly was a victim too, but no test could conclusively prove it.  This doctor personally treated two of the anthrax patients and was consulted in many of the other victims' cases, becoming somewhat of an expert on the illness following the attacks.  "I need to know more about this doctor," I determined.  Through an internet search I discovered that he was a professor of internal medicine at Johns Hopkins and head of family medicine at Sinai Hospital in Baltimore, Maryland.  Here was the connection I had been looking for - this was the doctor I needed to see.  He teaches at Johns Hopkins.  He works with patients who have perplexing illnesses.  This was my guy!

I called his office the next day, explained my situation and asked for an appointment.  I was very nervous about doing this.  After all, he is this important and well-known physician, and I'm just another patient asking for a moment of his time.  Much to my surprise, I was given an appointment during the first week of December.  I was elated that he would be able to see me in such a short time frame.  His office manager said that I would need to do some work to prepare for my visit.  I would need to gather up as many of my medical records from as far back in my life as I could, as well as test results, x-rays, MRIs, etc.  I needed to have them mailed directly to him so that he would have time before my consultation to build a comprehensive medical history and, in general, become familiar with my case.  Over the next couple of days, I did as instructed.  I even contacted the pediatrician who had seen me as a child.  Those were the only records that I could not get.  They had been destroyed when a basement file room flooded.  But other than that, he would have a very complete overview of my medical history from young adulthood on.

On the appointed day in early December 2002, Lynn and I drove from our home in Richmond, Virginia to Sinai Hospital in Baltimore, Maryland.  It took three hours to get there.  When we arrived, we didn't have to wait very long before the nurse escorted Lynn and me back to an examination room.  She told us that the doctor was still reviewing all the records that I had sent and would be with us shortly.  Lynn could see how nervous I was.  I was worried that once again nothing would be found.  I was equally nervous that something serious would indeed be found.  I didn't like either option, but I knew deep within my soul that I needed to come away from that visit with a diagnosis, a name for this thing which had invaded and disrupted my life so completely.  I wanted to know the enemy.

Finally, the doctor came in.  He was just a couple of years younger than me.  He engaged us immediately.  The first thing he said was that I didn't have anthrax.  Though I had never been tested for it, he could tell from looking at my recent lung x-ray and blood tests that anthrax could safely be ruled out.  He proceeded to tell me that after reviewing my records, we could rule out quite a number of diseases and disorders.  In fact, it was his conclusion that all of my extensive testing left him with only one logical conclusion - I had what is most commonly referred to as Chronic Fatigue Syndrome.  It was known by other names, but this was the most familiar usage in the U.S.  This diagnosis, he told us, did not have a medical test to detect it.  A diagnosis could only be made when all other possibilities were excluded - which is what my previous testing had accomplished.

Chronic Fatigue Syndrome, he told us, has no known cause nor does it have a cure.  It is like an autoimmune disease in that something triggers the body's immune system to react and fight a perceived disease or infection - but one that cannot be found.  Whether it is invisible to current medical technology or simply infects the body and quickly moves on is unknown.  The key thing is that the body continues to react and literally attacks itself, like say, Lupus.  But unlike a disease such as Lupus, Chronic Fatigue does not damage the body.  In other words, I wouldn't die from it.

"How do we treat it then," I asked.  He answered that there was no treatment for the illness itself per se, but you could treat the symptoms to alleviate the way it manifests itself.  He then went on to suggest a number of medications.  He said that I would need to work with my physician and psychiatrist in Richmond to discover which medicine regimen would be best for me personally.  No two Chronic Fatigue patients are exactly alike, and each must be treated individually in a way that is unique to them.

"How long will I have this illness," I asked.  He said that there was no way to determine that.  Some percentage of patients do recover - maybe a third.  Another third may spend years with the illness waxing and waning before there is improvement.  And then there is about a third of people who do not recover and with whom the condition only worsens.  In his experience he told us that if you do not recover in the first five years after onset, then it may take as long as 20 years for the disease to burn itself out.  I was stunned!  20 years?  I'd be 62 by that time.  I'll be nearing retirement, I thought.  So what about work, I wondered aloud.  Could I still keep working.  Sure, he said, if I felt up to it.  I should try to stay as active as possible while I can because there may come a day when that is no longer an option.

By the time my appointment was over, he had spent nearly two hours with us.  He was extremely thorough.  He offered some wise counsel about how best to live with this condition.  With wet eyes, I thanked him.  He had given me something that no one else had been able to give - a name.  I now knew what my disease was.  I knew my enemy's name.  I was determined that day, and every day since, to fight this enemy and not give one inch of ground.  And so we have fought for 13 years in a relentless war over what would determine the course and content of my life.  I haven't given up yet, nor do I intend to.

(Well readers, this concludes my story of how I became ill and the process I went through to be diagnosed.  While a year may seem like a long time to find out what is making you sick, I know too many others who have this same disease and have gone years upon years before being properly diagnosed.  I was fortunate.  I had good doctors who were open to my own involvement in my diagnosis.  For the most part, they didn't give up on me, nor I them.  I was persistent.  One lesson that I have learned from this process is that one cannot be passive in his or her own health care management.  You must be proactive and work as a partner with your physician to fix what ails you.)

Peace,

Stephen

My Very Own Personal Apocalypse, Part 3

September 16, 2014

Dear friends, family and constant readers,

In Part 1 of this essay, "My Very Own Personal Apocalypse," I shared the story of when I became ill with Chronic Fatigue Syndrome and how it changed my life.  In Part 2, I shared with you the journey from becoming ill through the confusing search for a proper diagnosis.  In Part 3, I'll share with you how I was finally and properly diagnosed, and what it took to get it.

When last I left off, my friend and psychiatrist decided to refer me to a colleague who was both a practicing psychiatrist and a physician, believing that with expertize in both mental and physical illnesses he would be able to accurately diagnosis my malady.  This was in the winter of 2002.  I had been ill for approximately 5-6 months at this point.

An appointment with this new doctor was set.  Copies of all of my most recent medical records were sent to him so that he could review what had been done thus far.  His practice was affiliated with the Medical College of Virginia (MCV), which is associated with Virginia Commonwealth University in Richmond, Virginia, and considered one of the best hospitals in the Commonwealth.

I actually had previously met this new doctor.  He was a member of another congregation near my own, River Road United Methodist Church.  He had been a panelist on a congregation-wide discussion we had held on how to cope with the aftermath of the events of September 11th the previous fall.  He was affable and gregarious - very easy to like and trust.  In our first meeting, we reviewed my case together: the sudden onset, the continuing symptoms, medical tests performed to that point and the different diagnoses I had received.  He then suggested a new series of testing for both familiar and unfamiliar diseases.  This testing would occupy the rest of the spring and much of the summer.  

The pattern of this new testing was that I would go wherever he referred me and offer up some vital bodily fluid, permit myself to be poked or prodded or have some various organ or section of my body x-rayed or MIRed.  Then I would wait for the results of a given test.  In every single instance, the result that I would receive was "negative."  Test.  Wait for the result.  Negative.  Another test.  Another period of waiting.  Another negative result.  Etc., so forth and so on...

This left me with a sense of despondency that we would ever find out what was going on with my body.  I

clearly remember one day when I was being tested for multiple allergies at the Department of Rheumatology at MCV.  This doctor was an immunologist, who specialized in allergy-related diseases.  She tested me for various allergies by pricking my back with multiple needles (20 or more) - each a test for a different allergy.  After we waited the appropriate amount of time, she examined my back.  I could tell that something wasn't right by her expression - she had a wrinkled brow, for one thing.  When I asked her what she had found, she told me that the test must have been faulty in my instance because all the needle pricks were showing negative.  She then asked me if she could retest me.  That meant enduring another series of multiple needle pricks.  It wasn't without a degree of pain, but I reluctantly agreed.  She proceeded to test me one more time.  Once again, the results were completely negative.  I showed no indications of being allergic to any of the things for which they tested.  At this, my shoulders slumped and my voice cracked as I asked her, "Does this mean that I'm not really ill?"  She looked at me with a very serious expression and said, "Absolutely not!  It's clear to me that something is making you sick.  But it just may be that whatever that thing is, with our current level of medical technology, we may very well have no way of knowing what it is.  In another decade or so, we may look back at these very same results with new technology and see something obvious that we just can't detect today.  I'm so very sorry."

I returned to the doctor/psychiatrist who was directly my testing. He was completely non-plused. He had expected at least one positive result, but to have none was baffling to him - and to me. He had ruled out any psychiatric disorders as being the cause, so depression was taken off the table. And with all the medical testing, most other diseases had been excluded as well. He expressed a feeling that he had let me down. I assured him that no, he had not. He had done everything I could have asked. I felt that he had been extremely thorough. "So what now?" I asked. After thinking about it, he concluded that we wait for a few weeks or months to see how my illness progresses. If things were no better, he said that we would need to take our exploration to the next level. That would mean going to a research hospital, like Duke or Johns Hopkins. What I needed was a doctor and a medical community that routinely saw the non-routine. Maybe they could help.

So another season passed as I waited on my illness to make itself known. That November, near the first anniversary of becoming ill, my father died suddenly. I left for Kingsport, Tennessee, my hometown, to look after his affairs and see to his funeral. As it turned out, I was designated executor of his estate. That meant more trips to upper east Tennessee. I was overwhelmed - first by my grief of losing Dad, and then my the many responsibilities I had just been given, all the while my illness continued unabated. In fact, the stress I was under only served to exacerbate my symptoms. One night, I was sitting in my parents' kitchen, when I decided to call my wife, Lynn. That day had been particularly rough and I could hardly hold my head up. As I poured out my woes to her, I told her that I had come to a conclusion - it was time to go to a research hospital. I didn't care which one. But I desperately needed to see someone who could help me.

(Dear readers, I had hoped to finish this story in three posts. But as I write this, I realize that it will take one more installment to properly conclude my narrative. I don't like for my blog posts to be too long, so I feel as though I need to break this one up into two separate posts. Thanks for your understanding.)

Peace,

Stephen

Contest to Win a New Kindle By Subscribing to My Blog By Email

September 14, 2014

Dear friends, family and constant readers,

The Free Kindle Contest:

During the coming month - September 15 through October 15, 2014, I am holding a special contest to giveaway a brand new Kindle from Amazon.  All you have to do is subscribe to my blog, "One Writer's Life," which comes out approximately 2-4 times a week.

How to Enter:

Go to my blog's homepage, scroll down and look on the right-hand navigation bar for "Follow By Email."  Enter your email address in the form and click "Submit."  You will receive an email confirmation of your desire to be subscribed.  Be sure to confirm through the link included in the email.

You only have to subscribe once and your name will be entered in for the drawing.  The winner will be notified no later than October 18, 2014 by email, so please be sure that you register using a valid email address.  If the winner does not respond with his or her mailing address within 48 hours of the notification email being sent, the prize will be forfeited and an alternative winner will be selected (same guidelines apply).  The contest prize - the Kindle - will be shipped after a mailing address is provided.  Once the prize is claimed, the winner's name will be announced on this blog.

Start and End Dates:

The contest will be held from Monday, September 15, 12 a.m. through Wednesday, October 15, 2014, 11:59 p.m.

How the Winner is Selected:

The winner will be chosen completely at random from a list of all who subscribed to the blog in the period specified.

Rules and Restrictions:

You must be 18 years old to participate.  You cannot be a member of the author's immediate family.  Your mailing address must be in the United States.  All previous winners will be excluded from the drawing.

So What If I'm Already Subscribed?  What About Me - the Constant Reader???

Okay, here's the deal!  You, too, can enter a separate contest by encouraging NEW readers to subscribe.  Let

your friends and family know about this blog and the opportunity to win a new Kindle, and if they like what they see and read, encourage them to subscribe to the blog.  If you recommendation results in a new subscriber, you will be entered in a separate contest to win a $25 Amazon gift certificate.

The way that you enroll in this contest is that you must send me an email and let me know who you have helped to subscribe.  I'll need a name and an email address in order to confirm that this person has subscribed.  That information will be disposed of once the verification is made to protect privacy.  The same rules to win the Kindle also apply in this contest as well.

If you have any questions about either contest, please email me and I will respond.

Good luck to all!  May the best person(s) win!  And may our blog community grow!

Cheers,

Stephen

My Very Own Personal Apocalypse, Part 2

September 12, 2014

Dear friends, family and constant readers,

In Part 1 of this post, "My Very Own Personal Apocalypse," I shared the story of when I became ill with Chronic Fatigue Syndrome thirteen years ago, and how dramatically it changed the course of my life.  In this second portion, I will share with you the journey from becoming ill to diagnosis - i.e., knowing what exactly was making me so sick.

So I became seriously ill on Saturday, November 10, 2001.  Sometime the following week, I summoned up the strength to go see my doctor.  After examining me, he confirmed what I had first thought - it was just a bad case of the flu.  I was to go home, continue to rest, drink plenty of liquids and take medication for the fever and chills.  He said that if I did that, I would be as right as rain in a few days.  Well, that didn't work out for me so well.  I didn't improve.  I continued to feel as though hit by a wrecking ball.

The next week, I once more drug my weary body to the doctor's office.  The flu would have passed by now, so he was a little more concerned this visit.  He performed some tests and told me to continue to rest and await the results.  Not too long after that, he called with good news.  He had discovered the source of my malaise - I had tested positive for mononucleosis.  At age 41, I had a case of "mono," the dreaded "kissing disease." I knew that my parishioners would have some fun at my expense with this diagnosis.  But I didn't care - at least I knew what was making me so ill.

Gradually, many of my initial symptoms receded and I was able to return to work.  I still didn't feel well, but I was well enough to go about my regular routine.  With sheer determination, I made it through the seasons of Advent and Christmas - the busiest time for a pastor of the church year.  When 2002 arrived, my condition remained the same - feeling as though I still had the "tail end" of the flu.  Though better than I had been in November, my feelings of dis-ease in body and soul troubled me.  I just wasn't myself.  I wasn't getting better.  If what I had was indeed mononucleosis, I should have been better.  What if, I asked myself, it wasn't mono after all.  What if it was something else entirely?  I decided that it was time for a second opinion.

I had all my medical records sent to another physician who was a friend of mine and someone I trusted.  I went to him for a full examination.  He was very thorough.  He went through my medical records and personal history.  He double-checked my recent tests and results.  He re-tested me for mono, and also tested me for some other likely culprits, such as tickborne illnesses like Lyme Disease and Rocky Mountain Spotted Fever.  As for these latter tests, his reasoning was that since I had spent so much time outdoors the past summer and fall, I could have been bitten by a tick infected with one of these illnesses.  That seemed like a reasonable assumption to me, and confirmed my own suspicions about how I might had contracted my illness.

I went back to see this doctor again after the test results had come in.  One interesting finding was that

mono could be ruled out completely.  The test that had been used on me initially was not the most effective and had resulted in a false-positive.  I was negative for tickborne illnesses too.  I tested negative for everything for which he tested me.  From the perspective of the tests, I was the model of good health - yet there I sat in the doctor's office - aching, perspiring, running a low-grade temperature and generally feeling like crap.   So what was up with me?  What was the source of my mystery malady?

Once the doctor had ruled out the usual suspects - and then the not-so-usual suspects (testing me for the presence of cancer, etc.), he told me his conclusion.  He diagnosed me with depression, which was manifesting itself in physical symptoms.  Say what???  I wasn't depressed in the least, in my own opinion.  Sure I was feeling down emotionally about how bad I felt physically.  Surely not, I thought.  But he laid out his case for how the symptoms fit, and there was a personally history of mood disorder in my background.  He cited Occam's Razor - the hypothesis that sometimes the obvious and simple alternatives are most often the correct ones.  Therefore, if we treated the underlying depression, the physical manifestations should relent.

I was not pleased with this diagnosis.  Depression is not how I would have characterized my own life the last few months.  Before my illness, I had been enjoying life and found much satisfaction in it.  Was I in deep denial?  Was I so depressed that I couldn't even recognize it in myself?  I found that hard to believe.  But since he was the doctor - and a friend I trusted - I was willing to go along with this diagnosis and see where it took me.

Over the course of the next few months - late winter into early spring - my symptoms seemed to wax and wane.  Some days I felt closer to normal, but other days I could barely manage myself.  I never really knew what to expect from any given day.  It might begin well, but end with me crashing upon my bed.

I grew extremely frustrated as we worked through this diagnosis of depression.  Even with all the

various medications we were trying, I still was not getting any better on the whole.  So finally, I decided to consult a psychiatrist about this diagnosis.  He, too, was a friend and someone I had seen previously.  Another plus was that he was the son of a pastor himself and knew first-hand the rigours of the pastoral life.  When I met with him and shared the diagnosis that I had been given, he concurred that the physical symptoms of depression did indeed match the illness that I was experiencing.  But, he concluded, simply because they match doesn't necessarily mean that they are one in the same.  He argued that one can be depressed and still have a chronic illness.  One can also be depressed because he or she has a chronic illness.  He felt that before we could safely conclude that I was suffering from the physical manifestations of depression, we should explore my illness further to rule out other, more remote and exotic possibilities.  So he referred me to a colleague who was both a practicing psychiatrist and a physician.  If anyone could get to the root of my illness, he could!

To be concluded in, "My Very Own Personal Apocalypse, Part 3."

Cheers,

Stephen