I wrote this article for Autoimmune Diseases SG. The full article is on the page, while here is an abridged version.
August is a special month for me. Other than being my birthday, it is also the month, when I was warded in hospital for Guillain Barre Syndrome, for the second time, in 2016.
Guillain-Barré (Ghee-yan Bah-ray) Syndrome (GBS) is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord. As an autoimmune condition, it is when 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, healthy (well, until GBS came, I thought I was healthy), and living a normal life. On August 7th, I checked myself into the hospital after experiencing some worrying symptoms). On top of a fever, I felt numbness in my face and my feet, as well as a tingling that did not go away. These were too similar to my previous episode. Two days after being warded, the diagnosis was confirmed by an observant registrar. On August 9th, I was rushed into intensive care. By the end of the day, I was fully paralyzed and on breathing support; I needed a machine to help me breathe.
The biggest struggle I faced was the mental struggle: the sense of helplessness and loss.
When you are unable to move, you are constantly reminded of your helplessness and loss. I felt useless. Things that people often take for granted like breathing and sitting, were actions that I could not do.
My inability to speak was the single greatest blow and took the largest toll on my emotional health. The breathing tube that kept me alive was also the one thing that made me unable to live the way I wanted. I was unable to speak, and that robbed me of my agency. Such a loss felt like an insult to my personhood. My wishes could not be expressed; I was no longer a person, but a body to be treated. People kept speaking over me as I could not respond.
In that painful experience, I came to realize that expressing oneself is a right, not a privilege.
I spent 10 days intubated, 3 days in the high dependency ward and 27 days in a normal ward, trying to regain normalcy. That’s 40 days. I got a 100+ days MC in total, so that was cool.
It's inevitable that people ask if I’ve recovered. Everyone wants to recover; to have our life back to what it was before. But to me, recovery is not the goal. To resume my old life, that is not my target.
I learned that I get to choose the life I want to live. And to do so, I need to make the best of every situation, rather than wait for the best situation to come by. I choose to be better every day. I now run, swim, and gym with greater frequency and consistency than ever. 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, making choices to live a full life, because I came close to losing my life. Am I fully recovered? I don’t think that is the right question. The right question is, am I living as well as I possibly can.
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. The logical assumption is that the only good outcome would be coming out of ICU fully recovered. But that was not something I could control. GBS recovery was entirely up to the body’s ability to first stop the immune system from attacking the nerves, and secondly for the nerves to regrow. Neither was really in my control. Or even a doctor’s control. If I did not recover, did it mean I failed?
I changed my success criteria to something I could be in control of.
And given my situation, there was very little I could control. But I could control my thoughts. I could pray. Well, I could only pray. So 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 bedside manners and a better-than-thou attitude. The patients whom I couldn’t see in the other rooms, I prayed for them. My visitors. I knew I couldn’t do much. But that which I can do, I do. That gave me the strength to declare that I was not useless. I am not worthless. I am not powerless.
In the same way, some of us might be overwhelmed in life. And I believe from time to time, we all might have an experience of waves of life crashing on us. It is then a call to stand firm on what we CAN do, and the waters will wash off. This is why I believe, that if we have robust financial health, at least one area is resolved. And to build good financial health, it takes small steps, and strategies to deal with black swans.
I would not have wished for GBS, nor do I wish it on 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. Illnesses can and do change your life; but the outcome is not necessarily back to normal, but a new normal. I encourage of all us, in our dark times, not to hope for a return to normalcy, but to soar over the storm and rise up.
I write on topics related to financial habits and decisions. Do explore my other articles at https://www.williamseah.com/blog if the ideas intrigue you. Drop me an email at firstname.lastname@example.org or text me at 9673 1523 if you’d like to chat over coffee or whisky.