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

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

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

My Very Own Personal Apocalypse, Part 1

September 10, 2014

Dear friends, family and constant readers,

A number of you have asked me recently about how I became ill with Chronic Fatigue Syndrome.  Given the interest, I thought I would take time to share my story with you.

Unlike many people with a chronic illnesses, I can point to a specific day when I became sick.  In the Bible, one of the images used to describe the way the world ends is as like "a thief (who comes) in the night." (1 Thessalonians 5:1)  That image speaks to me personally.  For me, the beginning of Chronic Fatigue Syndrome was like that - sudden, unexpected, a thief come to steal away my health, my well-being, my very vitality.  When that day came, my life as I had known it ceased to exist.  My old life was taken from me - and a new and strange one had begun.  Thirteen years ago this fall, I experienced my very own personal apocalypse.

When I awoke the morning of Saturday, November 10, 2001, it was a day much like any other.  I clearly remember how good I felt as I rose out of bed to greet the day.  I had good reason to feel great - I was in the best physical shape of my life.  And my life itself was both joyful and rewarding.  In my personal life and my professional life, I was living with the sense that everything was coming together.  But before the end of the day, it would all fall apart.

One of the reasons that I remember that particular Saturday is that it was the day of the annual Richmond marathon.  Lynn, my wife, was a participant and had planned to spend much of the day running those 26.2 miles around the city of Richmond.  My plans for the day included taking care of our five young children and finishing up a landscape project in the front yard of our church parsonage.

So that morning, I got the kids squared away with Cora and Hannah, the two older children, helping to look out for the younger three.  While they watched TV and played in the house, I went outside and began my chores.  For the second Saturday in November, it was an exceptionally beautiful day.  The sun was bright.  The air had a fall crisp feeling to it, but it wasn't cold.  It was a perfect day to be outside.

I had spent much of my off-time since June of that year outside.  On our property behind the house was a large patch of woods.  The undergrowth had been neglected for many years, so I spent that summer cleaning out the woods - getting rid of the bramble and poison ivy, cutting up fallen trees and creating a series of trails for the kids to be able to play.  I dug up piles of leaves which had accumulated over many an autumn.  Though I wasn't quite finished, I felt a great sense of accomplishment in the back yard.

Saturday, November 10, my attention turned to the front lawn.  I began my work about 9 a.m. or so and worked for several hours.  About an hour into my labor, I started to sniffle and my throat felt scratchy.  I didn't think much of it and dismissed it as a possible cold coming on.  Another hour or so passed when I began to feel my body ache.  I suddenly felt sore all over.  By this time I wasn't feeling all that great, but still I continued to work.  Sometime after noon or so, I began to sweat profusely.  It didn't take long for me to conclude that I was running a fever.  Since it was the beginning of November and of flu season, I thought that this was what was happening to me.  A reasonable conclusion, it seemed to me - all the symptoms fit: I had a case of the flu!

When Lynn arrived home from the race, the leaves in the yard were pilled up but not bagged yet.  I was sitting on the front steps of the house, feeling like a train had just run over me.  I told her how sick I was and asked if she would call someone to substitute for me in the pulpit the next day.  Then I headed to the shower to wash up and go to bed.

I was confined to bed for the next three weeks, as it turned out, with what I thought must been the worst

case of flu in my life.  For those three weeks, I ran a high temperature and sweat a great deal.  My throat felt raw.  My body ached terribly.  It felt as though my bones had been broken and my muscles torn.  But the symptom which stood out the most was the unrelenting fatigue.  I slept for the majority of each day.  I felt sleep deprived.  I just couldn't seem to get enough rest - no amount seemed sufficient.

By the end of those three weeks, the symptoms lessened in severity so that I could return to work, but they did not leave entirely - nor have they completely left me in the last thirteen years.  My new life was conceived in feeling that I would live every day of my life as though I was still just getting over the flu.  I felt like that at the end of November 2001, and November 2013.  I feel like that today.  I'm still living as though I have the "tail end" of the flu.

This is how my world ended.  This is also how a new, and very different one, was born.

Part 2
Part 3
Part 4
Some Things I Have Learned From and About Chronic Fatigue Syndrome

Cheers,

Stephen