A Twice Survivor of Guillain-Barre Syndrome

My name is William Seah, and I am a twice survivor of Guillain-Barré Syndrome.

Guillain-Barré (Ghee-yan Bah-ray) Syndrome (GBS) is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord. It is an autoimmune condition where the immune system attacks the nerves. Unfortunately, it is not easy to diagnose, and the symptoms are not always clear. The condition can present itself very differently in different people. For myself, it was a near complete body paralysis, with breathing difficulties.

At the time of my second episode, I was a teacher. At 34 years old, I was in relatively good health. As a father of two children, I was living a normal life.

On the morning of 7th August, I was fighting a fever. It was accompanied with numbness in my face and my feet, as well and tingling that did not go away. By night time, I decided that these symptoms were too similar to my previous episode, so I needed to get it checked out. I went to Tan Tock Seng Hospital, where the triage nurse informed me that I had an infection and a high fever and needed to be warded.

I explained the symptoms and suspicions to the doctor; they were intrigued. GBS is a rare condition; it is even rarer for someone to get it twice. While I was waiting for a bed in the emergency ward, the doctor on call came over a couple of times to try and diagnose me. But the diagnosis did not happen.

It was only on 9th August when the diagnosis was confirmed via more symptoms. I had issues with my eyes; breathing was laboured and responses were delayed. It was a relief to know what illness it was, but it was also scary as the illness is not an easy one. I was rushed into the intensive care unit and intubated. I was paralysed; on top of being unable to breathe on my own.

The biggest struggle here is the emotional struggle, the sense of helplessness and lostness. When you are unable to move, you are constantly reminded of your helplessness and lostness. I felt useless. What people take for granted, simple things like breathing and sitting, these were actions that I was excluded from. But the largest impact on my emotional health was the inability to speak. The tube that kept me alive concurrently made me unable to participate in life. I was unable to speak, and that robbed me of my agency, the loss of which was an insult to my personhood. My wishes could not be expressed; I was no longer a person, but a body to be treated. People inadvertently spoke over me.

Expressing oneself is a right, not a privilege.

At this point, I was intubated but GBS patients are not sedated in ICU so we spend hours just lying there. The tube sticking out of my mouth is the intubation tube and it reaches all the way back into my throat and somewhere into my lungs. It was pumping air into me, an important thing that was keeping me alive. It ironically was also the most horrible thing in the world. It gives life while robbing you of your ability to participate in it.

In the ICU, no one could tell me how long I’d be there; no one could tell me how long before I could see my children. I was desperate for them to see me normal, but as long as I was unable to speak, intubated and lost, I did not want them to see me for fear it would traumatise them. It was not a good place to be.

Treatment for GBS is unlike other illnesses. The idea is that the body’s immune system will eventually stop attacking the nerves; and that the nerves rebuild themselves. Both are not entirely treatable with medicine, and the solution in large part is to support the body in correcting its own mistakes. There are certain drugs, notably intravenous immunoglobin (IVIG), that helps speed up the recovery.

I managed to be weaned off the breathing support (10 days intubated), and went to normal ward for my next stage of resumption of life. In the main ward, while I had some degree of agency in terms of my voice, I was hampered by my physical limitations. Re-learning to sit, stand, walk, to do the basic activities we all take for granted. I was an invalid; a phrase we do not like when it is used on us. And that was what I was. But I fought. And I got better. The resumption of my activities was not linear. I had days without any progress and suddenly, my hands would be able to move. Muscles that were unable to move would suddenly announce with an ache and a joyful jerk, that the nerves were back in action. Then followed by days of no change.

It is inevitable that people ask if I’ve recovered. Everyone fears illness and our wish is to recover; to have our life back to normal. But to me, recovery is not the goal. Normalcy is not my target. I have a life to live. And I have learnt that my trajectory in life is dictated by me making the best of every situation. I can get better and stronger every day. I now run, swim and gym with greater frequency and consistency than ever. Today at 41, I am fitter than I ever was. I am more present with the people I am with, learning to listen because the right to be heard is a right, not a privilege. I am living more fully than I ever was. Am I fully recovered? I don’t think that is the right question. The right question is, am I living well?

I was not always this optimistic. I was depressed during my days in ICU. In the depths of my depressed days, after I had wrestled with a choking fit, while I was broken in my spirit on the bed, I had this moment of clarity.

Victory was not in the outcome. Victory is in the choices we make.

In every situation, I can choose. I had assumed that victory was coming out of ICU in order to say I had triumphed. But if I had put success as that criterion, it meant that I was not in control of the success factors. There was a chance I would not leave ICU. Does that mean I am a failure?

I changed my success criteria to be something I could control. And given my situation, there was very little I could control. But I could control my thoughts. And I could pray. Well, I could only pray. I prayed. I started to pray for everyone who came into my room, the nurses, the cleaners, the doctors. Even the doctor with straight up horrible bed side manners and a better than thou attitude. The patients whom I couldn’t see in the other rooms, I prayed for them. My visitors were prayed for. I cannot do much. But that which I can do, I do.

For Guillain Barre Syndrome, or any other medical conditions, it’s easier to focus on what you can do. Set the bar low. Target things that are a sure success. Then when you are confident, start pushing yourself to do the harder things. We all know that positive thinking is important, but when you are in the situation, positivity is a very hard thing to do. When we are in the grasp of depression, success is one stone we can stand on. And if we can set the bar low enough that success is nearly guaranteed, we have secured one foundation, allowing us to stand on it, push off to try and do harder things.

I would not have wished for GBS, or on it for anyone. But GBS has taught me a lot about life, about living. It has taught me to pursue a full life. When life is taken away from you, and given back, you tend to be a lot more careful with it.