LF

From : Rev. Carolyn S. Belshe <cbm ission@door.net> To: C Gress <unclete@thegrid.net>
Subject: Is this it?
Date: Tuesday, Decem ber 28, 1999 10:46 PM

FORW ARD

Getting the glorious news that I had been selected to m anage a hospital in Southeast Africa m eant that I would pass a rigid physical exam ination with lots of laboratory testing and to begin a series of inoculations to enter foreign countries. The excitem ent of foreign m issionary work had been with me since age seven. Nearing the ripe age of fifty m eant leaving behind two adult sons, two grandchildren, a host of friends and a successful career in long-term care adm inistration. Protection consisted of shots and pills and such for protection against everything from Yellow Fever to Rabies. I was to start taking chlorquin tablets to build up immunity against M alaria.

I had always been on the m anagem ent end of health care and left all those m edical debates and decisions to those so trained. M y nurse colleague made arrangem ents for our pill taking amounts and tim es and faithfulness to the task. I took m y turn at other duties more related to training schedule departure dates and the like. We arrived in upstate New York to experience a m onth of intense foreign service orientation. I thought m y recent m id-life weight gain was slowing m e down. M y colleague was comprehending things in training that seem ed to just float over m y head. Never daring to question what was happening, I continued to blam e the weight gain and all those shots that could possibly make us feel badly a few days.

Arri ving in Portugal a few weeks later, I collapsed upon entering our apartm ent and slept for eight hours without moving, while she got acquainted with the beautiful living arrangement, scouted the neighborhood for grocery stores and bus stops. Two days later it was time for us to enter language training. Oh sure, the reason she was learning Portuguese so much easier was her background in Latin in nursing school. Oh well, there will be equalization along the way, I thought.

We continued our daily routine of pills, then m ore shots, then tim e for that long anticipated flight to Africa. Our work began. Several weeks passed into months and the civil war was carrying on and our hospital was serving the injured of both sides along with M alnourished being the prim ary diagnosis on all admissions and Malaria being the second on all adm issions. Then came the third and m ain cause for their arrival in the emergency room (usually) – that being war-related atrocities of which most Am ericans can not fathom .

One, then the other of us, began having episodes of M alaria. She would be down a day or two at the m ost and spring back. For m e, no way. Fear for m y life would fly through the mission station, m aking news in the Church office 500 miles away where that news would be transmitted 10,000 miles back around the world to the New York office. Reserves of four different treatments would be adm inistered with the local folks praying that their m issionary friend would not die on their hands. Plans would be made and I would be shipped stateside for m edical leave, recovery and return to the m ost interesting and fulfilling job of m y life.

Five years and eight docum ented bouts like I have just described and I was brought to Atlanta, GA for further testing and several m onths m edical leave. Upon com pleting that course of action I was sent to New York to work in the finance office of our m ission agency. I contacted a private physician there who had 35 years experience in M alaria work, hoping that he would have a form ula for freeing m e of what seem ed to be post-m alaria complications. He tested and observed me for several months with a final dism issal of not providing clearance to even leave the States. Supposedly there was a heart m urmur or som e sim ilar m inor reason he provided.

In order to return to frontline m issions work, I took an assignm ent in New Mexico with a K-12 school. That position provided schooling benefits for m y adopted children who were still in Africa. I had m anaged to accumulate enough vacation and sick tim e to stop over in West Texas for Ordination and gall bladder surgery. Both program s were successfully accom plished. I returned for the post-op check up to report the instantaneous relief from the gall stone surgery but I continued with this dreadful sensation of fatigue, particularly in m y back m uscles. I then asked, "would there be any chance of this problem being linked to M yasthenia Gravis since I had had a thym ectom y in 1978 --- as a result of chest pain? An appointm ent was set with the neurologist and eight days into m y new assignment (and new insurance plan) I was given the diagnosis of M G.

Starting a new medication called Mestinon, I continued to work long hours, thinking the m edication would m ake the difference. As with m any new assignm ents in the world of finances I had com e upon an interesting challenge of budget problem s that no one wanted to claim --m eaning longer hours and m ore stress. It took eight m onths of stress over the scale before m y body said enough and shut down right into a M G crisis.

M ost folks would have been willing to stop back up the road several years but I was one of those die-hards that kept going. I had cut m y teeth on M anagement by Objective, setting all sorts of records for resolving m anagem ent problem s and m ade lots of money for ownership as results. Why was I so driven? Wh y did I have to prove to fam ily, co-workers, and to m e that m y strength was equal to m y size – extra large?

I did not know. I just knew it m ust be done.

After the M G crisis I began recuperation slowly. Som e days I seem ed to go backwards then to regain a little only to loose ground again. I had decided that m ay be buried in all this was a point or two of anger that had not been processed. I sought out our pastoral counselor for our church. When we inventoried after not three or four sessions that I thought would be sufficient, but 18 m onths' worth, we were able to identify thirteen points of grieving. Still, a lot of questions remained in m y m ind about the personality and the disease and how could they work together to benefit som eone – how could I use those two factors to re-enter m ission work.

One of the great blessings of illness is that you can be recipient to m any cards, letters, phone calls, visits and e-mails. Som ewhere along that part of m y journey I cam e in contact with a childhood friend. She brought her husband along and they cam e to visit m e after forty- two years of not seeing one another. What a wonderful visit! We have continued to stay in close contact through the wonderful advances of technology called e-m ail. They sent a m agnet belt to tr y on the m uscle fatigue. Then she found a book about M yasthenia Gravis and asked if I had read it.

That little book has been a m issing link in understanding M yasthenia Gravis and the personality involvem ent. When I began reading Clete Gress’, “Beyond the Limits”, I began writing notes in the m argins, underlining, making references, remem bering dates and incidents. Ultim ately I began getting acquainted with the m an who has written words in algebraic equations, personality traits, and sequential steps of behavior. He has done this in a simplistic way that m akes this little book m y best advisor to living with M yasthenia Gravis.

Clete Gress is a m an who has lived forty years with the disease because he has figured out long ago that personality is a m ajor part of the governing of entering the world of M G and living there after one has entered. I can only say "Thanks Friend." As he brings to the internet the edition, I look forward to the freshness of breath of the Holy Spirit to bless him for the strength needed to accomplish this task so that m any others m ay have the opportunity to find som e Peace in mountain stream s and contentm ent in the forests of one’s Soul.

Rev. Carolyn S. Belshe, BSOE, M BA, M Div. Ordained Minister and Commissioned
M issionary with General Board of Global Ministries – The United Methodist Church.

CHAPTER I

Ithinkyoyoumighthave MYASTHENIAGRAVIS

 

The shower was warm and good, a sharp contrast to the rest of this day's events. As the warm water soothed m y body, m y m ind replayed scenes from today's Test Hop of a T29.

About fifteen m inutes into the flight, still clim bing from take off at about five thousand feet, our left engine caught fire. Smoke rolled off the wing and when it thinned I could clearly see flames. This was serious trouble but no reason to panic as I had faith in the engineer on today's flight.

I had always been able to function during em ergencies, but today, looking out at our engine burning, on a wing full of explosive fuel, I began to feel a strong and terrible anxiety.

The fate of our plane rested squarely on the judgment of the flight engineer. He would decide at precisely which mom ent to trigger the fire extinguishers that were built into the engine pods. You had only one shot and tim ing was everything. When they were used up it would be tim e for plan "B". Jum p!

The Flight Engineer's hand was raised high, as he stared at the burning engine. From m y seat, behind his position, I could see the copilot looking around the bulkhead, waiting for the signal to activate the extinguishers. I looked out the window at the flam ing engine, then to the engineer's hand poised in the air, then to the copilot with his hand on the switch. Ten lifetimes passed before the engineer's hand finally sliced downward. A huge puff of sm oke billowed from the engine and then---nothing!

The next thirty seconds were excruciating as we waited to see if the fire was completely extinguished. If it rekindled we would have no choice but to abandon the plane.

I looked behind m e to the escape door in the tail. A num ber of tim es I had stood at that door, ready to go, but had never had to jum p. M y body tensed as I considered m y chances of exiting the hatch safely if the fire reignited.

As the tension thickened, all of us watched for new signs of sm oke or flam e. Realizing that the fire was truly out the pilot turned the plane and we headed for the base.

 

Later I figured out that I had earned and extra dollar fifty for that ten m inutes of hell.

 

The shower washed over me and I hoped it would, som ehow, heal the shattered emotions of today’s traum a.

Were the em ergencies becoming m ore severe or was I losing m y nerve? The ver y thought of flying another test hop filled m e with dread. Flying had been fun, I recalled, until when? Shortly after failing a review board and loosing m y Technicians rating. The depression that followed seemed to change everything. I should have quit flying at that tim e but we sim ply needed the m oney too m uch.

The shower mixed with the tears that stream ed down m y face.

What was happening to m e? Lately The tears would flow for no apparent reason. Not a single tear but a flood of tears. Always when I was alone. Thank God for that but, Why? I had never been m uch of a crier and now I felt uneasy and a little asham ed. In addition to everything else I didn't need this!

I m oved the soapy washcloth to m y chest. Nothing! I couldn't apply pressure! I could raise it up but could not apply the slightest bit of pressure to m y chest. What was happening to m e?

The next day I went on sick call. The Flight Surgeon gave m e som e tranquilizers and told m e not to fly for a couple of weeks but he didn't take m e off flight status, so I continued to get m y precious fifty- five dollars.

The tranquilizers proved worthless and in the next few weeks I experienced double vision, weak legs, weak arm s, droopy eyelids, difficulty in breathing, trouble chewing, trouble brushing m y teeth, and difficulty com bing m y hair but the doctor didn't know what was wrong.

The dread of flying was gone now, but it had been replaced by new and m ore terrifying fears. I could not comm and m y body to do as I wished. It just would not work as I asked it to!

Finally, out of pure desperation and frustration at the inability of the doctors to diagnose the problem , I pushed m yself as hard as I could to intensify the s ym ptom s, and when they were all at their peak I struggled into the Flight Surgeons office, past the other m en waiting, and said, "Here! Look at m e!" M y speech was slurred and I could barely keep m y eyes open. M y breathing was shallow and m y legs were rubber.

A look of recognition cam e over the doctor's face and he disappeared for a few m inutes, returning with a m edical book.

 

"Here it is," He said. "I believe you m ight have M yasthenia Gravis."

CHAPTER II

YOU’RE ON YOUR OWN

 

M y relief at having a name for what was happening to m e was indescribable. There was a reason for m y weakness and m y recent failures and it had a name.

 

M yasthenia Gravis? How did I catch this disease? What exactly is it? Nobody seem ed to know m uch about it.

M y doctor told m e they had a m edication that would control M G and that I would be able to lead a perfectly normal life. This good news held up for about two days of taking the m edication, but the side effects were so severe that I wondered which was more disabling, the disease or the cure.

The following m onths were filled with doctors, hospitals, tests, m edicine that didn't work, m ore tests, m ore doctors, m edicine that worked and then didn't and then, finally the verdict that I was "stabilized." At least I could function a little better.

Words like "Incurable," "Rare" and "Crisis" becam e very im portant and personal to m e, and it was soon clear that the amount of real knowledge about this disease was minuscule. So that was som ething new to worry about.

The relief of having identified it slowly eroded as I cam e to realize, m ore and m ore, that I was on m y own. There would be no magic cure. No doctor was going to solve m y problem . This feeling resulted in a sense of isolation that was with m e for years. I tried but couldn't shake it. I felt very m uch alone. True, I was alone with a loving and supportive wife and five great kids, but in this one area I felt a need to comm unicate, but couldn't. I tried from time to time but was always m isunderstood until I felt it best to keep it to m yself. The fault was not theirs, I knew. It was mine.

What exactly was I tr ying to say? Why did I hurt so m uch inside? Why wouldn't the events at James Connally Air Force Base near Waco Texas, leave m e alone, get out of m y m ind? The Tears! Always the tears and why was it impossible to express any of this?

There was no shortage of questions but very few answers.

M edically retired from the Air Force, we returned to our hom e town, San Diego. The VA awarded m e a 100% disability rating and assigned m e to a Dr. Brown who was in charge of the psychiatric dept. Norm ally M G would fall under neurology but San Diego's VA didn't have a neurologist. Since I still needed som eone to write m y prescriptions, Dr. Brown was m y m an.

Com pared to the Air Force Hospital where I had been poked in every place that it's feasible to poke a person and stuck in every other place the VA was a ver y friendly place. No one wanted tests because they adm itted that they knew very little about M G and apparently weren't the least bit interested. That was fine with m e.
Dr. Brown looked up the m edication and wrote m y prescriptions. He would ask if I wanted to try som ething and would get it for m e if I did. He knew enough about the medicine to keep me out of trouble and, at the sam e tim e, gave me the feeling that I had some control. This seemed ver y im portant. We always talked when we m et and, although I wanted to, I never m anaged to talk about James Connally or the pain and tears.

Build a wall--Chink the cracks--and get on with your life!

During one of our talks, Dr. Brown m entioned that he had read about a psychiatrist who had achieved som e success with nine or ten M G patients. Unfortunately the doctor had died without writing about his treatm ent. A Good News-Bad News joke! An interesting piece of inform ation but it just raised more questions. How could a Psychiatrist help someone with M G? Wasn't this a physical disability? The nerve can't transmit the signal to the m uscle. That's physical. Well then back to the first question. How could a psychiatrist help som eone with M G?

During another of our talks Dr. Brown mentioned an article that said that all M G patients seem ed to have ver y sim ilar personalities. If this were true it would seem feasible that a psychiatrist could play a role in this puzzle. Did ones personality have som ething to do with why they got M G? Interesting.

I filed all this away along with the new questions. At this tim e I had no hope of ever m aking progress toward real understanding.

CHAPTER III

PAINTAPICTURE&DIE

The year was 1961 and I had been out of the Air Force for two years. M y disability, M yasthenia Gravis, now affected m y legs, arm s, eyes, breathing, swallowing, speech and facial expression. When I say affected I m ean these areas had varying degrees of weakness at different times up to and including total shut down.

Without the medicine, M estinon, all of the above m uscles would cease to function and I would end up in the hospital. This is called "going in to crisis" and is som ething that occupied m y m ind quite a bit lately. Crisis is som ething that I, ver y m uch, wanted to avoid.

The M estinon dose that had started with one 60m g pill every three hours had slowly, through necessity, been raised to six 60m g pills every three hours. In addition, two 180m g Tim e Span capsules had been added to get m e through the night. A Tim e Span is a slow release capsule that lasts twelve hours. Without this Tim e Span I had, on a num ber of occasions, stopped breathing in m y sleep. This had always resulted in m y waking with a giant gasp. The confidence of that always happening was wearing thin.

Continuing to raise the level of M edication, as it becam e less effective, was fine but I knew the tim e would soon com e where I could not tolerate the increased dose. This worried m e a lot. I would end up in the hospital on "God knows what" kind of machine until the m estinon becam e effective again.

M y life was in a very precarious state. I believe Howard Cossell once said "Perched on the precipice of peril." That certainly described Clete Gress in 1961.

Joan and I had m anaged to buy a sm all house in the town of Escondido, California. I was unable to work but, still needing something to do, I signed up for an Art Class in oil painting. On the first day, after getting our m aterials and tools together, a potted plant was positioned in the center of the room and we were told to paint it.

Having never painted before I was surprised at the challenge. I liked the atm osphere and the people and felt good about this new direction. At the end of class the teacher told us to take our work hom e and finish it before our next class.

Fine! I could do that. Good Plan.

That evening Joan went to bed shortly after getting the kids down and I found m yself with peace and quiet and the kitchen table to continue m y painting. It was 9 o'clock and, I was still pum ped up from the afternoons class. Totally im mersed in m y work, I painted on without regard to tim e or the whole universe. This feeling of excitem ent and enthusiasm had been absent from m y life for several years and it felt real good to have it back.
There-----it’s finished, I thought, as I looked at the clock for the first time. 6 AM --LORD! I should get som e sleep but couldn't resist sitting and adm iring what I had done. M arvelous, Grand------It is wonderful and I am wonderful and All is right with the world!!!!!

And then a thought----M EDICINE!

 

I hadn't taken any since--------when? 8 o'clock yesterday evening. Oh God ten hours!

 

Within seconds M yasthenia Gravis rushed at m e from every direction. Weak LEGS, ARM S, DOUBLE VISION!

 

"I have to get m y pills," I thought.

 

Panic swept over m e like a blanket of ink!

 

Swallow, I comm anded, Oh God swallow! But m y throat would not obey.

 

Under your tongue--fool--put it under your tongue--Geez it tastes bad.

 

Slowly I felt I could swallow and I put five pills in m y m outh, some water, and with a silent "God don't let me aspirate," felt them slide down m y throat.

 

I lay on the couch, breathing with m y stom ach muscles until the M estinon took hold.

 

Scared? You bet. Probably m ore scared than ever in m y life!

 

Exhausted, I went to bed.

 

I had not Died.

 

Not this tim e.

 

I had won.

 

Barely. I went to sleep.

CHAPTER IV

INSEARCHOFCONTROL

In the following weeks m y thoughts were totally dom inated by the events of that night. From the tim e I awoke until I went to bed, I would lie awake half the night, could think of nothing else.

Ever ything that had happened, I knew, was very im portant. It raised m ore questions. How had I worked so long without m edicine? Why was this day different than any other? But m ore exciting was the hint that I could possibly find some answers. Had I been rem inded of m y pills because I had felt weak? No, I was feeling great until after I realized I had not taken m edicine in ten hours. It was fear that had triggered that crisis.

This was no ordinary fear. This fear could kill m e!

 

But how did this day happen anyway? The art class was fun, yes, even exciting. Was that it? Excitement? I had never felt such enthusiasm !

The realization slowly came. The excitem ent had produced Adrenaline and had raised me up to a level where there was no M G. M y enthusiasm had kept m e suspended there until fear, anxiety, apprehension slamm ed me to the ground. Enthusiasm , Excitement, Adrenaline! Fear, Anxiety, Apprehension! They were opposing forces. One was m y enem y and the other m y friend!

I concentrated on anxiety for awhile. I was fascinated by the power it had exerted over me and wanted to understand. Convinced that the anxiety had com e first and had m agnified the weakness, I cam e up with this view of its roll in an M G crisis.

Anxiet y caused weakness or weakness causes anxiet y

 

Which leads to more weakness causing

 

Anxiet y and then weakness

 

Ending in Crisis

In other words there could be, in the beginning, anxiety that produced weakness or weakness that produced anxiety but once the chain started they fueled one another. Greater anxiety producing greater weakness which in turn produced greater anxiety etc. etc . This view is decidedly different from the view that anxiety is m erely a side effect of the disease as all disease will produce m ore or less anxiety. This anxiety was playing an active roll on the path to CRISIS !

The other view of a crisis was frightening indeed. The immune system , acting entirely on its own, would begin attacking the body, driving it further and further into a state of weakness, until finally the patient would stop breathing and collapse.

That’s what would have happened the night of the painting episode had I not been able to take m y m edicine. But did it have to be that way? If the new view of the role of anxiety was correct I could have sim ply laid down and relaxed and rid m yself of anxiety which would have stopped the downward spiral. I use the word "sim ply" but I believe it is obvious that controlling anxiety is not simple. Still, this had to be a useful tool.

By understanding this view, and being convinced of its validity, I received an unexpected bonus. In the following months the weakness no longer seem ed to generate the fear as it had done before. No longer afraid of crises I began to relax about m y condition.

I had effectively neutralized the negative side of M G. Anxiety was still a part of m y life but when it did occur, such as in a room full of strangers or people that I wasn't at ease with the resulting M G would be m inim al. Further, the M G, having produced no anxiety of its own, would stop there.

A major victory!

I realized I no longer had to fear the disease but this was not enough. Once having tasted victor y I wanted m ore. I wanted to improve m y condition, work m y way to rem ission, if possible, and the key had to be on the positive side. The painting episode had strongly suggested that Enthusiasm --Excitem ent--Adrenaline would do the job.

I had always spent tim e drinking coffee and thinking in the morning. A ver y good tim e to think! These periods, then, were perfect and I don't know if I m ade a decision or just fell into it but slowly they becam e periods of meditation with the goal of producing anticipation. Anticipation of the coming days events.

Each job that I wanted or had to do would be put through the wringer until something was found that would excite me, som ething to look forward to. Som ething like painting.

Something as m undane as taking out the trash posed a special kind of problem . (It’s really, really hard to get excited about taking out the trash.) This type of job I sim ply side stepped. For instance, I had planted some flowers near the trash can---I wonder if they are doing well, even bloom ing? The anticipation of finding out would carry m e through the job and it was done.

As a child I had been the world's greatest day-dreamer and in m y fantasies I always won the battle, always came out on top, always was the hero. I tried using this as a tool with the hope of producing excitement and discovered something. The fantasy blocked out all anxiety, all worry.

Is this the reason children day-dream ? To block out a world that has a lot of bum ps or rough spots. Could be. I had been so busy trying to produce the positive experience that I had neglected the negative.

I began thinking of different adventures and placed m yself in them as the m ain character. Soon I had three or four fantasies running at the same tim e and I would flit in and out as I pleased. When I tired of them I concentrated on the tasks ahead and found it easier and easier to produce the desired anticipation or excitement.

This, then, was m y daily routine. Have two or three cups of coffee. Relax. Day-dream a little and m editate on the day ahead until excitement was generated. I did nothing that I wasn't enthused about doing. Jobs that generated no excitem ent had to be put off until they did. If I was in the m iddle of something and I lost interest I switched to som ething else. A lot of things were half done but I usually managed to com plete them at another tim e.

Soon work became easier. M ore and more m y days were free of M yasthenia Gravis. I was pleased with the progress. I was still taking M estinon every three hours but it was working better.

M onths went by.

I began to experience signs of overdose. Mouth watering—stomach--cramps--diarrhea--chest pains. I lowered the dose from six to five ever y three hours. No m ore overdose sym ptom s and I did just as well on the new dosage. This was the first tim e that I had ever been able to reduce m y m edicine. Always, in the past, it had to be increased.

A m onth or two later I lowered it again to four and then to three.

After getting down to three pills every three hours som ething began to happen. M G weakness was showing up m ore often and it was getting m ore severe. I increased the M estinon back to four and then to five. A cloud of depression set in. What was happening? All of m y victories were m elting away. Had it all been one big coincidence? What a cruel joke that would be. M aybe all that meditation was so much hooie! The disease had just gotten better on it's own and now it was getting worse on it's own.

God, I couldn't accept that!

 

Countless hours were spent going over every scrap of inform ation I had, in an effort to find the flaw. Ever ything has an explanation and I would find this one.

Slowly the realization that, at som e point, I had increased m y work day to six and seven hours. The last two or three hours of this period would be filled with M G. Apparently working into that area that produced M G wiped out any long term benefit and actually reversed m y progress.

I would have to cut back on the hours I was physically active, but how? M y enthusiasm was still high after five hours. The solution was not long in coming. I had noticed that if I had a can of beer or a glass of wine that m y enthusiasm dim inished. This, then, was the answer I settled on. M editate and do m y work but after four or five hours or at the smallest hint of M G have something to drink and relax. M y work day was over. The alcohol effectively m ellowed me out, killing m y drive and it also helped to block anxiety.

Looking back I'm not sure if this was the best possible solution but for a m an who was stum bling and groping for answers it would have to do. It worked and in those days anything that worked, I did!

Since first writing this I have, once again, developed the need to use alcoh