Patient Stories

Sibylle’s Story

My story started while I was vacationing in Thailand. I was 26 years old and it was my first trip all alone. Peter, an old college friend of mine, lived there, so I was going to visit him. I wished to see the world and to prove to myself my independence.

I arrived in Bangkok in June 1984. I had just finished a big part of my graduate work, and had even passed part of my exam to become a high school teacher in Germany, the country of my birth. I had a few months left before I had to dive anew into serious studying so I decided to take advantage of a great opportunity to fly to Thailand for little money. Off I went on the biggest adventure of my life, not knowing that I would never come back the same way again.

The sounds, sights, and smells of Bangkok were amazing. Everywhere you looked you saw street vendors and little pickup trucks called tucktucks with passengers hanging out on all sides. Merchants mostly sold food, but other articles like jewelry, artisan baskets and clothing where also to be seen. There was even a market floating on the river. Each vendor had his own boat set up with items to sell and the only way to actually buy them was with your own boat. It was nearly impossible to see the murky water of the river through all the colors. It was hard to be alone in a city so far away from home, but I felt exhilarated. I remember thinking that nothing could happen to me, because I was going to take good care of myself. What ever happened, I was in control of my life.

To visit Peter I had to travel south from Bangkok, to a little town close to the border with Malaysia. Southern Thailand was beautiful: purely tropical, lush and green. Tropical rains made the forest glitter like silver and the ocean was a blue mirror hemmed by wonderful white beaches.

I spent some time with my friend, eating exotic foods, sleeping under a mosquito net, and spending a lot time at the beach.

But my sense of adventure made me leave soon to see some more of the country on my own. So I flew to the island of Phuket. I checked into a beach hotel so cheap that it was nearly free. It was paradise. I sat at the beach admiring the ocean, feeling free as a bird.

I met David, my future husband at a beach bar where he was sitting, having a drink. We started talking. We got to liking one another. We got to know each other more and more. We had dinner together in simple but delicious Thai restaurants. We ended up spending all days together, until he had to leave.

That’s when I decided to visit another Thai island, Ko Samui. It was on the other side of the peninsula. It turned out to be a much quieter place, less tourists and less build up. This was because it was much more out of the way, more difficult to get to. You had to go on a long boat ride. That suited me very well. My goal was to get away from crowds.

There were two choices of traveling to this tropical beauty. One was to take a six hour overnight boat ride, the cheaper and much less convenient way. Then you could go on a fast boat. It took less than half the time. I managed to take that vessel.

I was in awe when I saw this unbelievable beautiful place. It was not built up at all. The hotels were even less expensive than Phuket. All bungalows were made out of straw. It was a vacation location for the young and free. Since I was both of those things it was perfect. I fit right in. It did not take me long to make friends, a young couple from Canada.

But then the trouble started. I suddenly developed a bad cold. My throat started throbbing, I began to sneeze and cough. I was annoyed at that. How silly to have a cold in the tropics, on my wonderful vacation. I decided to ignore it. I wanted it just too quickly go away. But it didn’t. It got worse instead. During one night I felt so lousy, and I had the weirdest nightmares. I was lost somewhere, being attacked by spiders. I could not move, I was trapped. Is this a dream or is it reality?  I would soon have to find out.

The dream scared me. When I woke up the next morning I was drenched in a feverish sweat. I felt absolutely horrible.

My self-preservation went into action. I just had to fight off this terrible flu. My thought was to just go to the straw bungalow of my new Canadian friends. Together we could find a solution to this problem. I was desperate for them to tell me that I was really fine. Yes, a good night’s sleep and a visit to the island doctor for some cold remedies was all I needed. The doctor didn’t have anything for me. He told me that it will pass in a few days. Good. That was the news I wanted to hear. I spent the remainder of the day taking it easy.

Another night with nightmares, night-terrors. I was bound. I couldn’t move a finger. I was trapped in an enormous spider web. I screamed out. I woke up. Was it true?  Why did my feet feel so strange?  They were numb with pins and needles. I shook them, I wiggled them. The sensation    did not cease. I tried to get up. But I felt weak, I had trouble standing. With enormous effort I managed to get out of my hut. The sand under my feet felt funny. The sensation was not right. It felt fuzzy and odd. I dragged myself over to the Canadians. They were a bit shocked when I told them about these strange sensations. Was this really the flu?  They suggested to go for a nice walk on the beach. Yes, I was certain that was going to make me feel better. Fresh air has always been a good remedy. So off we went. But my feet didn’t improve. If anything, the sensation got worse. My feet did not feel the sand clearly any more. It was more of a fuzzy sensation. I did not make it to a very long stroll. I had to be half carried back to the hut. This is when I lost it. What on earth was happening to me?  I started to panic. What was I to do all alone on this remote island?  I knew instinctively that I had to somehow get myself back onto the mainland. How could I do that all alone, feeling as weak as I did?  The Canadians were leaving that night, and even though I had basically just arrived I had to join them. I needed support, physically and emotionally.

In the evening we set out. We went on the 6 hours long trip on the slow night boat. I have trouble believing that this voyage was real. We were cramped like sardines in the belly of the ship. Nearly all the passengers were Thai. They traveled with huge families with bags and bags of food, clothing and who knows what else. If I were not ill I would have loved this exotic adventure. But under present circumstance it was hard to bear. I had fever chills and my weakness was increasing nearly by the minute. I was lying there in a daze. All the noise and commotion around me was muffled, removed by miles. I did not pay attention to anything. I was not asleep, I was not awake. My fear was replaced by utter lethargy. After hours and hours of this we finally arrived on the mainland. What to do and where to go now?  My Canadians took me on the train going south. Their destination was Malaysia. The train had a stop in Songklah, the town where my British friend Peter lived. I had to get back there. I had to find help. So I said goodbye to my Canadian friends. They continued on as I dragged myself out of the train. I had hardly any strength left.

My condition was getting worse very fast. I cannot remember how I got myself into a cab, to Peter’s place of work. The only thing that is still in my mind is telling the driver of the cab that I was not well. Then I recall not being able to make it up the flight of stairs that led to Peter’s office. I remember being at the bottom of it, not knowing what to do. Then I vaguely remember somehow being dragged up. I remember Peter’s horrified look when he saw the state I was in. I must have looked pretty bad.

Well, then my memory fails me again until I find myself lying on the couch of a Thai family that I had never seen before. Later I learned that Peter had brought me to these nice people, because his apartment was empty from morning to night while he worked. Victor, the husband of the family, in which I found myself, was British. He was Peter’s friend. Victor was a lovely guy and his Thai wife was as sweet as could be to me, the stranger from the west.

It was weird being with total strangers, lying on a couch in the living room in faraway Thailand, getting weaker every day. In fact my weakness slowly turned into paralysis. It crept up my feet to my legs, to my torso and chest, and ultimately trough my shoulders down my arms into my hands. Within a short time, hours, to be exact I could no longer get off that couch.

Well, Peter, who checked on me every day during my week long stay at his friend’s house, Victor and his wife decided that my situation became dire. They checked me into the small hospital of the little town of Songklah. It was a simple but clean place run my European missionaries. The paralysis had attacked my entire body. My eye muscles failed, which led to double vision. I really could not make out anything anymore. I was disoriented, terrified as can be, lonely, absolutely miserable. My thoughts were that I was going to just die here in Thailand. How could this have happened to me?  This was not an illness that other people had on a trip: diarrhea and stomach problems. This was very different, much more serious. I don’t think that Peter or my Thai hosts had ever seen anything like this before and neither had I.

Songklah hospital was a funny little refuge. Everything was simple and bare. At first I was examined and observed. A spinal tap was done, taking some fluid from my spine to examine it. Then I was brought to my room. The spinal tab revealed that I had an auto immune disease that attacked my nervous system. At first it was thought to be MS, but then it was diagnosed as Guillian-Barre.

Days went by. My symptoms just kept getting worse on a daily basis. The eye muscles were now completely paralyzed. I saw everything double. I couldn’t move my lids. My whole body started breaking down. The entire staff of this tiny hospital became seriously worried about me. One evening, when my condition was particularly awful the doctors and nurses all stood around my bed, praying for me to be healed. It was an eerie feeling. I thought that I wasn’t far away from being given the last rights.

When I began to develop breathing problems the decision was made to get me to Bangkok, to a big, modern and advanced hospital: the Samitiveh. I was transported on a commercial flight, being motionless on a stretcher. I don’t remember much of this, just my ride in an ambulance from the airport to the hospital. It was madness. I had to undergo tests after tests after tests. The diagnosis of GBS was confirmed.

In both MS and GBS, the body’s immune system goes haywire and attacks the nervous system. In both cases this causes a dissolving of the myelin sheath, which in GBS can cause total paralysis. Every single muscle in the body is affected. For that reason it can lead to death by shutting down breathing.

So that’s what I had—better than MS, I guess. It suddenly occurred to me that I might not be going back to Germany to finish my exam in time. I was still hoping for it though. I really did not want to throw away all my hard work and not get my master’s degree. I told the doctors that they had to get me well by the fall, but they gently tried to tell me that it wouldn’t happen. I chose not to believe it, unaware about an enormous setback that was going to make any thought of returning to Germany any time soon impossible.

A few weeks into my illness, which had reached its plateau, a major event robbed me all consciousness:  I had suffered a stroke.

From that point on things became blurry, unclear. I had been paralyzed all over. Now a second paralysis had hit me: my left side was affected. The flaccidity became spasticity. Cramps as intense and painful I had ever known existed hit me. I heard my own voice, screaming. I was only half conscious for about 10 days, days which were like a bad dream for me. I was trapped in a dream which did not allow me to wake up. I heard voices, I noticed people around me, they talked to me, they fussed over me, but I could not give any response.

When I woke up from this nightmare, I was utterly disoriented. I could not see (not with my brain at least), I uttered nonsense, I had totally lost control of my bodily functions. The list of what I couldn’t do went on and on.

Besides the physical breakdown one of the worse effects was that I could not write anymore. I had to start forming my letters from scratch, like a first-grader. My brain had lost the connection. Here I was, a graduate student of literature and language unable to write my name. I spent months relearning.

Weeks went by. I was given Valium to quiet the cramps and to make me sleep. The nights were the worse part. There were no distractions. The pain and helplessness was overpowering. During those terrible nights the reality of my situation slowly dawned on me. I was in a foreign country, far away from home, from family and friends. My life was hanging in midair. I had no idea what would ever become of me. The idea of having become a cripple was totally ominous. I was healthy and young. My adulthood had just started. Which woman in her twenties would ever think of lying in a hospital with a stroke of all things?

They had started physical therapy at the hospital in Thailand. I had to relearn so many things!  The damages from Gillian-Barre and from the stroke were unclear at that time. But, I do remember that motion slowly started to return on the right, whereas the left was a bag of useless limbs. My arm was stiff as a board twisted in some weird knot and my leg was not responding to any of my wishes. I spent hours at PT. It was exhausting. No other physical workout had ever been that hard.

I spent four months in Thailand. When the day came to go home, back to Germany, I was terrified. I had no idea how I would ever go back to my former life. The person who I had been then did not exist anymore. I was frightened that my friends would not understand that. I was scared of letting them see me like that. In Thailand nobody had known me before my GBS and stroke, hence there was no danger of being compared to my former self.

I was coming home to emptiness. I could not finish my degree, or continue living in the apartment I had shared with a friend. Where should I go?

I ended up spending four months in a rehab center in Germany. I had to do physical, cognitive, and emotional rehab all day long. I remember the first time they took me out of the building to teach me how to walk outside on uneven ground. It was unreal.

So I picked myself up out of the dark hole in which I had fallen. I met with my friend David again. We even went back to Thailand, the “scene of the crime”: an inner cleansing, coming to terms.

This all was 28 years ago. I still have physical limitations as a result, but I have decided to not let them stop me from living. David and I married in 1986. I finished my masters at UCLA in 1989, became mother in 1991 and again in 1994.

My life now is divided between in “Before” and “After”.  Even though I am left with a lot of physical problems, I am happy.

My health issues today all stem from orthopedic issues, which were caused by the neurological situation. I needed foot surgery, shoulder surgery and a total knee replacement. I often have joint pain and nerve pain, but now I have a great family, two wonderful daughters and a great husband who went with me through thick and thin. I live in a beautiful house in Connecticut. I left my former life behind, but I will never forget it.

My battle with this illness has taught me some very useful things.

I have learned a lot about my body. On a daily basis I do all kinds of exercises. I swim, I work out in the gym, I do yoga. I try to eat a healthy diet.

Last, but not least: life is precious and our time on this earth should be valued.

Find the good that’s in your world.