What in the world is "Guillain-Barre syndrome?"

Developmental Autobiographical

FOR: CGCC Psychology 2103: Introduction to Human Development

Fall, 2006. Mr. Tony Bell

BY: Jay Moreno

DATE: 11/16/06

It was early April, 2004. I was a healthy, fifty-six-year-old bachelor with a job I loved and, generally speaking, happy as a clam. That was about to change – the healthy part, anyway.

I was on a ten-day business trip that took me from my home in St. Marys, Georgia, northward, through the Carolinas and the Virginias. By the late afternoon of April sixth, about the fifth day of the trip, I pulled in to a Hampton Inn, as usual, in Charleston, West Virginia. I had not felt quite myself as I traveled west across I-64 from Richmond earlier that day. I went to bed early that night with a feeling that I was on the verge of coming down with something.

Around 1:00 AM, I woke up in a profuse, diaphoretic sweat with a high fever, chills, and diarrhea. I realized right away that those symptoms were indicative of a pretty strong dose of something quite virulent. Being a veteran of the road, I immediately suspected bad food somewhere along the way. Being a former Navy Chief Hospital Corpsman, I was not easily spooked by such an occurrence. Moreover, I always traveled with an aid kit chock full of over-the-counter palliatives. I immediately started dosing with acetaminophen for the fever and loperimide for the diarrhea and intestinal cramping. I figured that at worst, I would have to call and beg-off of my appointments in the morning, spend a day in bed, then resume my trip the next day, albeit probably feeling like Hell.

The next morning, after waiting ‘til nine to call and beg-off of my appointments, I walked over to the next-door convenience store for a quart of Gatorade. On the walk of a hundred yards or so, I had this really odd sensation that my legs were not moving quite as quickly as they should. It was as if there was this almost imperceptible added delay of nano-seconds between when my brain was signaling my leg muscles and when they were responding. Moreover, I felt terribly fatigued and had no appetite whatsoever.

By that night, I felt no better. The next morning, realizing that it was most assuredly not going to turn out to be just another 24-to-48 hour intestinal bug, I cancelled all of my remaining appointments and headed for home. That turned out to be a long and miserable trip of about twelve hours longer than usual, with many more than the usual rest stops.

When I finally got home, my boss agreed that I should lay-off until I was recovered. Around the 13th, still feeling poorly, I went to a local “doc-in-the-box.” He told me that it was no doubt a severe case of a food-borne illness, as I had suspected, and that I should just continue to rest and treat it symptomatically for a few more days.

On the night of the 15th, I went to bed early. I had been feeling more fatigued than ever that day, but, at least my appetite had returned with a vengeance. About 1:30 AM on the 16th, I woke up to got to the bathroom. I stood up from the bed with no problem, but when I went to step off towards the bathroom, I came down with all of my weight on the top of my left foot, rather than the sole. I went down like I had been shot through the head. My left leg rolled up under me and I heard a sickening, loud snap as all of the lateral ligaments of my left ankle parted.

After crawling into the bathroom, I decided that this quite interesting development definitely called for an investigatory trip to the ER. My first game plan was to get dressed and drive myself. After crawling into the living room, dragging my clothes in my teeth, I was able to pull myself to my feet by climbing up the arm of my sofa. After the second time I did that, only to fall backwards, hard and uncontrollably, as if someone had taken a baseball bat to the back of my knees, I called 911.

I finally got to the Camden ER around 3:00 AM. Through the wee hours of the morning the staff ER physician ran an extensive battery of tests, including a CAT scan of my head. Around noon, a different doctor stuck his head into my cubbyhole and said with a smile that the good news was that all of my tests had turned up negative (i.e., “within normal limits”) and that I could go on home. I informed him that while I was glad to hear the test results, I remained somewhat concerned about my inability to even stand up, much less walk. Moreover, during the night, I had begun to loose strength in my arms and hands. Nonetheless, he insisted there was nothing clinically wrong with me and that I should get up and go home.

When I attempted but failed to get up off of the ER gurney, they called in the fire department (I weighed 310 at the time). It took three firemen to lift me into a wheelchair. At this point, I was flabbergasted. I wondered whether I was in The Twilight Zone or if, perhaps, a crew from Candid Camera was in the hospital. When I asked if they would mind if I just sat out in the waiting room for a while to see if I might spontaneously recover, they graciously said that I could.

Every thirty minutes, or so, they would peek out to see if I was still there. After some three hours of that, they apparently began to wonder if perhaps there really was something wrong with me, after all. They then had a couple of physical therapists take me over to their clinic. After several attempts at lifting me to my feet and assisting me in futile attempts to walk, they apparently were convinced. I was finally admitted to the hospital as an inpatient around 3:00 PM, a full twelve hours after my arrival.

I had no sooner arrived in my room before yet another doctor arrived and introduced himself. From the nature of his questions and his practiced millifluent tone, I deduced immediately that he was a shrink. I humored him - toyed with him, actually – for a few minutes before I finally informed him that I knew he was a shrink, that I was quite sane, and that it was not a psychosomatic illness, but, most likely, a neurological crisis. He concurred, wished me well, and departed. He no sooner left than in came a neurologist, Dr. Silliman, a practicing neurologist and University of Florida Med School professor.

As luck would have it, they had caught him at the St. Marys satellite clinic of Shands / University of Florida Medical Center just as he was about to depart for Jacksonville. In another stroke of luck, that was the only day of the week that there was a neurologist anywhere in the county. After hearing, from my mouth, the history of my illness, he told the ER doc that he felt quite certain that he knew what it was and that it was imperative that I immediately be rushed by ambulance to the neurological intensive care unit of Shands/UF, Jacksonville. It was getting more interesting with every passing hour.

When I arrived at Shands, the three things that Dr. Silliman wanted most urgently were an MRI of my head and neck, a stool sample for C&S (culture and sensitivity), and a spinal tap. The next day, he informed me that he suspected that I had a classic case of Guillain-Barre syndrome, but that he needed to await some test results, to be sure.

Test results later ruled out a brain tumor and confirmed Guillain-Barre. It seems that I had contracted a bad case of an intestinal bacterium known as Campylobacter jejuni. A typical means of transmission is the ingestion of contaminated and undercooked meat, particularly poultry and pork. While it is a particularly nasty bug, the overwhelming majority of victims recover fully. However, about 1-in-100,000 patients go on to develop Guillain-Barre syndrome, a rare, auto-immune disorder.

Although GBS is not yet fully understood, the current scientific consensus is that most likely, the outer shells of certain strains of the bacterium bear a close, microscopic, morphological resemblance to the outer covering of the myelin sheath of the victim’s PNS. In a case of mistaken identity, the protective macrophages of the victim’s immune system not only go after the Campylobacter jejuni bacteria, but the nerves as well. Thankfully, CNS cells are not affected.

There are two categories of Guillain-Barre syndrome: demyelinating and axonal. The former, as the name implies, involves damage to the myelin sheath only. Between 90% and 95% of those patients recover fully, and usually within 6 to 18 months. The latter is much more severe. In the axonal form, the macrophages not only “eat through” the myelin, but also do permanent, irreversible damage to the underlying axons. Maximal recovery (of the damaged myelin) in the axonal form can take up to 24 months. As a former girlfriend once said, “Jay, if you had a pet duck it would drown.” Naturally, I have the axonal form.

I remained in the neurological ICU for 14 days. They infused me with massive doses of human immunoglobulin ($36,000 worth), the standard treatment. Total bill for 14 days - $88,880.00! That was to be a drop-in-the-bucket compared to the two-point-five million I guestimate this will cost eventually.

After the human immunoglobulin had suppressed and stopped the attack on my nerves, I was transferred to about the cheapest, most Gawd-awful nursing home in Jacksonville, Lanier Manor. That was the on-the-cheap decision of my regular group health insurance carrier. I more or less vegetated there for two months while I continued to try to convince my employer’s Workers’ Comp carrier that my predicament was covered by Workers’ Comp law. In the meantime, I was being covered by my regular health insurance at work. I couldn’t lift my heels up off of the sheets. I could not button a button or squeeze toothpaste from a tube. I could only just barely turn over in bed. I received laughably inadequate and infrequent attempts at physical therapy in what was no more than a hellish, foul-smelling, convalescent center.

Finally, around the first of July, I prevailed in the Workers’ Comp dispute, thanks in no small part to knowledge gained during my twenty years in the insurance business. Within 48 hours of the news, I was transferred to Brooks Rehab in Jacksonville, the absolute premier rehab hospital in this part of the country.

I was treated wonderfully at Brooks until my discharge on January 7th of 2005. Apparently, after reviewing my case, the director of the physical therapists made a wise decision to assign me to a woman who was generally acknowledged as their best PT. Her name was Rhonda Felice. Rhonda was a forty-ish woman from Trinidad. Raven haired, with gingerbread skin, raisin-dark eyes, and a smile that lit up the gym, Rhonda was technically superb and humanly wonderful. In six months, exercising three hours per day, she took me from infantile helplessness to largely regained upper body strength and the ability to use a walker sparingly and get around fairly well in a wheelchair. I will be eternally grateful to her and always consider her a friend. I have another half-dozen friends on staff at Brooks, as well.

Since I came home in January of 2005, my Workers’ Comp company has provided me with Certified Nursing Assistants (CNA’s) for four hours per day, seven days per week. They do the housework that would be exceedingly difficult, if not impossible, for me to do. Additionally, they took me to physical therapy in St. Marys thrice weekly through the second anniversary of my illness, when my neurologist decided that I had reached my “maximal medical improvement.” They take me grocery shopping weekly and, since August, to college classes at night.

Even though the overwhelming probability is that I will never walk again, my current situation is not so bad. I’ll turn 59 on the 29th of this month. Other than my obvious neurological problems, my general health is otherwise pretty good and my spirits are fine. I should note that the insurance company tells my lawyer that sans the GBS, I should have expected to live another 22-years, vice the 13.5 they project now. I plan to prove them wrong. I’m on Social Security and Medicare. Moreover, I’ll continue to receive my weekly indemnity checks from Workers’ Comp until a few months after I turn 64. At some point, I’ll receive a few hundred thousand dollars in a lump sum for future medically related expenses. That will happen after I prevail in my argument that they should foot the bills for a power wheelchair and a wheelchair van that I can drive.

The fact is that I could sit on my butt and do nothing for the remainder of my life, from a financial perspective, not to mention that I have a legitimate and almost certainly permanent “45% whole body” disability rating. However, I find that prospect quite unappealing – even daunting. My pre-GBS game plan had always been to die with my boots on, actively engaged in some remunerated endeavor or other.

The post GBS, post maximum medical improvement question became one of what did I want to do with the rest of my somewhat diminished life within the parameters of what I would be physically able to do. My manual tremors ruled out brain surgery and diamond cutting. Ballroom dancing instructor / contestant was out. So, I settled on teaching. Actually, teaching was something I had thought about in the past, but never found it very, well, “convenient” to pursue it. Post GBS, the steady “paycheck,” plenty of time, and Vocational Rehabilitation’s willingness to pay all of my college expenses made it entirely feasible.

Truth be told, the above cited reasons not withstanding, there were other factors in my decision to go into teaching. All of my life, I had worked at various jobs, none of which ever became “my life,” as so often happens with workaholic careerists. They were simply the means to keep me fed, clothed, and housed, while I found enjoyment and satisfaction in other pursuits, not the least of which was a keen interest in all facets of life which were readily available for observation, if one but took the time and had the inclination. In consequence, I don’t have much in the way of earthly possessions, obligations, or, paradoxically, wants. What I do have is a vast array of eclectic knowledge that I’ve accumulated, both actively and passively, over the span of close to six decades. It seems to me that the contents of an old, well-stocked mind would, indeed, be a terrible thing to waste. I feel that the advantages of my extensive store of knowledge far outweigh the disadvantages of age, especially as compared to the internalized knowledge base of a typical, twenty-something, beginning teacher. That a priori belief has been consistently and powerfully reinforced by my observations of my young, fellow education students, but, as Ronald Reagan once famously said, I’ll not hold their youth and inexperience against them.

In conclusion, let me say that I am very upbeat and looking forward to the remainder of my life.

That was easy: Now for the more odious part of this mercifully final assignment.

Somewhere along the way, I’ve heard it said that the process of accepting a disability, particularly an adventitious one, is similar to the stages of acceptance theory of Elizabeth Kubler Ross’ “stages of dying.” The five stages, with which I will assume you are conversant, are “denial and isolation,” “anger,” “bargaining,” “depression,” and “acceptance” (Santrock, 2006, p. 643-645). While I’ll grant that the words “You have 90 days to live” may well produce a much different response than “You will probably never walk again,” I find in retrospect that I really went through none of the first four steps before arriving, quite early on, at the fifth step of acceptance. With regards to “denial and isolation,” my first reaction after a confirmed diagnosis was given was not “This can’t be happening to me,” but “It figures.” As to “anger,” I was never even slightly perturbed. I was certainly not angry with “God.” As an agnostic, I have no concept of a possibility of my GBS being a form of divine retribution or just plain omnipotent bastardliness. Somebody has to be the “one” in the “one in 100,000” incidence of GBS. “Bargaining” would, of course, be highly illogical for a rational agnostic. I can honestly say that I’ve never experienced situational depression, or endogenous depression, for that matter, subsequent to this affliction.  Perhaps I absorbed some Oriental stoicism during the first six-months of my year in Vietnam with the Marines (as an HM2). I worked as an OR tech – actually performing minor surgeries myself for 12 to 16 hours per day – at the Binh Vien Nhi Dong Hoa Khahn (Hoa Khahn Children’s Hospital) at the Marine’s Camp Butler, just north of Da Nang. I know being in a really bad way when I see it. I also realize that if you have to become disabled, you can’t pick a better place to do so than the U.S.A. It’s even better, if you can become disabled under circumstances which qualify for 100% coverage under Workers’ Comp, as I did. So far as acceptance goes, I was told early on by one Shands / UF neurologist, Dr. Pulley – a guy with the bedside manners of a Neanderthal – that in his opinion, I would never walk again. However, no one would really be able to say for sure what the extent of the nerve damage was until two physical therapy-filled years had passed. I immediately proceeded on the assumption that I never would walk again, but, at the same time, enthusiastically poured myself into physical therapy without much hope but, paradoxically, with no discouragement.

While my individual case refutes the applicability of Kubler-Ross’ stage theory to disability, it should be noted that I am a very odd and highly atypical duck – a condition I find quite satisfactory, mind you. Across a large sample of people with disabilities, her theory may well hold water. However, I see that there are challenges to the validity of Kubler-Ross’ theory.

What is the current evaluation of Kubler-Ross’ approach? According to psychology of death expert Robert Kastenbaum (2004), there are some problems with Kubler-Ross approach:

• The existence of the five-stage sequence has not been demonstrated by either Kubler-Ross or independent research.

• The stage interpretation neglected the patient’s situations, including relationship support, specific effects of illness, family obligations and institutional climate in which they are interviewed (Santrock, 2006, p. 644).

Knowing that I wanted to confine my discourse to the limited subject of my obvious disability, rather than the highly personal entirety of my nearly six decades of existence – the Oprahfication of America and your no-doubt trustworthy APA oath notwithstanding - I figured I would be hard put for a second source, especially given my mobility limitations. Ergo, I went on the Internet and bought a text – an anthology – called The Psychological & Social Impact of Disability, by Robert P. Marinelli and Arthur E. Dell Orto, the “editors.” It’s not a “keeper’ for me, but you might find it interesting and useful. I’ll make you a good deal on this low mileage text, if you’re interested. At any rate, it served its intended purpose. In chapter 10, there is a discussion of “acceptance of loss theory.”

According to an individual named B.A. Wright, there are four possible changes – all salutary – in the values of a disabled person that can serve to preclude or limit their possible devaluing of the remainder of their life.

* Enlargement of the scope of values. A newly disabled person may acutely
mourn the value of the aspect(s) of his former life which have been lost.
Wright suggests that enlargement of scope is initiated when the person begins to recognize the importance of values other than those presumed lost. Such recognition is stimulated by a variety of experiences, including the need to manage activities of daily living and the need to seek relief from being satiated with grief. When a person can find meaning in events, abilities, and goals, then the person is enlarging his or her scope of values (Dell Orto & Marinelli, 1999, p.140).

* Subordination of Physique Relative to Other Values.

In contemporary American society, there is much emphasis on physical appearance and ability. A newly disabled person may experience a heightened sense of loss that clouds the remaining value of such things as friendships, job satisfaction, intelligence, and creativity. As the scope of values broadens, the relative emphasis on physique decreases; the “worth” of the person begins to be determined by abilities and characteristics in addition to those related to physique. For example, personality and effort may gain in importance relative to appearance or actual ability (Dell Orto & Marinelli, 1999, pp.140 - 141).

* Containment of Disability Effects

In some cases, the global effect of a limited physical disability can spill over into “affecting other physical abilities, emotional and intellectual spheres, and even the overall value of the person (Dell Orto & Marinelli, 1999, p.141). This is called the spread effect. Containment of spread is dependent upon the perceiver. For example, spread can be avoided or decreased if the disability or loss is seen as a ‘possession” rather than a personal characteristic (Dembo, et al., 1975, pp. 32-33). That is, if the disability is seen as a personal characteristic, the person and the characteristic become a closely knit unit; a disabled person. Spread is likely to occur because feelings about the
disability, viewed as central, personal characteristic, can affect other aspects of th person, just as other personal characteristics can. If, however, the disability is seen only as a possession, then the person and the disability are perceived as separate: a person with a disability. (Dell Orto & Marinelli, 1999, p.141).

* Transformation of Comparative-Status Values to Asset Values

When a personal quality or ability is compared to a standard, a comparative-status value has been given to it. In contrast, asset (intrinsic) values involve evaluation based on qualities inherent in the thing being evaluated, such as its intrinsic worth, usefulness, or beauty. With an asset value, it is possible to focus on the value of the object, ability, or person being evaluated rather than upon its status compared to something or someone else. A wheelchair may be valued for its usefulness as a means of mobility, rather than devalued as inferior to walking or running.. the effect of asset values is to make it possible to appreciate the value of something which otherwise would be devalued because it falls short of a higher comparative standard. Whereas comparative evaluations are necessary to show progress in rehabilitation or treatment, when a comparative-status statement reflects a judgment of personal worth, particularly a negative judgment, it becomes detrimental to the acceptance process.

Although not encompassing all types of value changes that may occurwith acceptance, the four value changes are hypothesized to be strongly related to acceptance of loss (disability) as nondevaluating. They may facilitate a positive reframing of disability and “free people to act in ways befitting their own characteristics rather than those of an idolized normal standard” (Wright, 1983, p. 183). Thus, acceptance of loss paves the way for positive adjustment to disability. (Dell Orto & Marinelli, 1999, pp.141 - 142).

These “value changes” I can relate to. In all four cases, I jumped immediately to the “good,” transformed side of the paradigm without ever having experienced any of the precedent negative psychological experiences described here. But, as I said before, I’m an odd duck. I think that the ease and immediacy of my successful adjustment to my disability has a lot to do with my having been single all of my life and entirely self-supporting for all but 17 of my 59 years on this Earth. That, and the fact that when you have the considerable remaining physical ability that I do, the luck-of –the-genetic-draw to be in
the top 2% of the distribution of intelligence, and the extreme good fortune of being a citizen of the best political system on Earth, there is no excuse for being anything but highly optimistic about my future.


Keany, K. & Glueckauf, R. (1993). Disability and value change: an overview and reanalysis of acceptance loss theory. In R. Marinelli & A. Dell Orto (Eds.),

The psychological & social impact of disability (pp. 139- 151). New York: Springer Publishing Company.

Santrock, J. (2006). Life-span development. New York: McGraw