It’s the year 2008. I was 32.
I’m in a prison within a prison within a prison. The Abyss. The last post entiled Part 2: Pariah saw how I slowly got to this point.
The First Prison: The Body and Mind.
I’m in between a treatment cycle.
The doctor has exhausted classical methods of control like steroids, antibiotics, antihistamines, fish oil, UV treatments, or all sorts of supplements, Chinese medicine, avoiding foods I was apparently allergic to. The list goes on. It also includes lifestyle changes like staying at home majority of the time, multiple showers a day, closing my door with the air conditioner on. But any combination of the above couldn’t suppress the eczema, and the inflammations, inch and bodily pains entered into a vicious cycle. The more inflammations, the faster the inflammations spread, and soon the eczema was fully blown all over my body, but the nightmare is knowing that not only was it scaldingly painful, but it would also soon lead to something worse. Infections, cellulitis, lesions, and abscesses over my body. I remember having to lie down on the doctor’s table, as he held that surgical knife or needle, to manually drain all the pus from those lesions. It was a painful 45 mins, as the knife cuts into my flesh to release the colloidal substance and I have literally never seen so much pus in my life. Some abscesses were 3/4 the size of a golf ball. There is no end to this. I literally looked like some of the Walking Dead.
It’s not an exaggeration.
Once the eczema is in “not looking back mode, having no other choice, the doctor has to give me the “big guns” and administer to me a course of the maximum dose of 300mg Ciclosporin, a powerful immunosuppressant drug used by kidney transplant patients to prevent organ rejection, and also antibiotics to compensate for my weak immune system. While on it for about 2 weeks, my external symptoms actually clear up. But this is a slow killing drug, so it’s fool’s gold to use it. I look normal on the outside, but I’m dying inside. After 10 to 15 years, there is a high chance of liver failure. And the lack of career and increasing medical bills would have ruined me anyway. It’s been 7 years since being on and off of the maximum dose of Ciclosporin. Only 3 to 8 years left before my “termination” date. No one would know about this Sword of Damocles hanging over my head.
When on it, my life was a cruel illusion because this is not a real solution.
What has the solution? It was supposed to be trial and error.
Once my external was free of inflammations, what counts as a successful treatment cycle (it’s a sad standard of success), is whether I can get off the ciclosporin, and use the exhausting cocktail of classical methods as I stated above to “hold down” my inflammation free body that the Ciclo removed.
But what sort of life is this “classical Plan B?”
The “classical treatment Plan B” was still extremely laborious and expensive, but least it wasn’t as lethal to my internal organs. I had to use 3 different types of steroid creams, with different intensities and with antibiotics. I had topical immunosuppressants like Protopic, painkillers, drowsy antihistamines, multiple moisturizers and also sleeping pills because I couldn’t sleep because of the scalding pains.
It took me literally 4 whole hours a day to implement Plan B, but I am prepared to accept this barely worth living lifestyle if it got me off the Ciclosporin, which would likely kill me via liver failure within those 15 years.
On this particular treatment cycle, 4 weeks ago, I was on 300 mg of Ciclosporin. 2 weeks ago, I was on 200 mg of Ciclosporin. Today, I am on 100 mg of Ciclosporin. When I was on the maximum dose, the inflammations were only about 5% of the body. But just four weeks later, as the dose was slowly dropped to 100 mg of Ciclosporin while using the maximum treatment of Plan B, the doctor diagnosed that now I have inflammations over 70% of my body. Again, I couldn’t get the Ciclosporin levels below 100 mg.
This looks like another failed treatment cycle. Since 2001, 30 cycles, 0 successes, in seven years.
The best I ever got was to 100 mg of Ciclosporin before the eczema would go out of control despite me on a full treatment of “Plan B”.
It seems futile.
What was my day like, during the bad days?
The doctor’s official statement on this cycle is that 70% of my body is covered with sores. But who cares on the percentage number? To me, it was full-blown and I couldn’t even sit down properly.
I couldn’t sit on my eczema, so I had to keep adjusting my sitting position until I found a patch of relatively clear skin to sit on. You would find me contorting my body to find the appropriate spot. By my inflammations are dynamic, and the position of my sores change slightly every day. So every day is like a treasure hunt for a spot on my backside. And on days that there were no clear areas on my backside, I would lie, usually in a fetal position on the floor.
The whole day.
Some wounds are as deep as second-degree burns. The physical pains are hard to describe. Imagine the worst sunburn you ever had, then throw in some army ant bites, a bad smell, and then add some hot oil to make the scalding pains messier. Also imagine shedding skin like a snake, except the skin doesn’t fall off nicely and fallen skin does note reveal fresher skin underneath, but something even worse. The fallen skin has chunks of blood, pus or plasma, the reminder that in a way, I am dying. Pieces of me were falling off. The Walking Dead should have hired me as an extra. No makeup required.
I have just woke up and it’s 11 am.
My sleep is totally messed up because of all the pains that kept me awake against the strong drowsy antihistamines. I’m always in a state of incomplete consciousness. When its time to sleep, I can’t be totally asleep. When its time to be awake, I can’t be totally awake because the antihistamines dull my mind. Scalding pains and a blood-stained bed remind me that my nightmare is still going on.
The worst part of the day is here. I have to shower. If I don’t, infections will eventually lead to something worse.
It’s excruciating when the water dripped over the open wounds and cracked skin. Have you ever spilled boiling water on yourself? Or, like me, accidentally dripped concentrated sulphuric acid on yourself during high school? It feels something like that… except it’s on your whole body. It scalds, and also feels like millions of needles scratching and piercing your flesh.
Nerves scream out till numb.
I lived in a bedroom with a conjoining bathroom. My door is always closed. I scream in silence. Guttural noises were all I could muster.
After 5 minutes in the shower, all my wounds are saturated with water and the pain drops momentarily because the body goes numb. That’s why I stay in the shower for 20 minutes more. It’s an illusionary comfort, because the moment I get out and the water starts drying, the pains start all over again.
I would be crawling out of the bathroom on all fours, tears involuntarily weeping from my eyes, saliva dripping out from my mouth as I just endured volumes of acid burning down my body. It burned and burned until my brain was numb and temporarily lost control of some muscle functions. Every morning is a struggle to not faint.
No one in my family ever saw this. My door was always closed in the mornings.
The next day, I know that my inflammations will grow from 70% to 75%. I knew because I have seen the rate of exacerbation too many times. When it starts escalating, there is no stopping it. The more inflammations, the easier it becomes to have more inflammations. Like a raging fire, it spread exponentially.
When the inflammations hit 80%, the doctor will put me on 300mg Ciclosporin again.
This is because after the inflammations, there will be infections, and after the infections, something worse. Just a few weeks prior, the doctor moved me to hospital as an emergency once he realized I had cellulitis, the infections were not just on the skin but under the skin. Some lymph nodes swelled to the size of golf balls, I have never felt such pain before that prevented me from even standing up or walking. In the case of severe eczema, some inflammations make it easier to have more inflammations. Like a raging fire, it must be contained or else it will spread at an accelerated rate. No doubt, this is the fate waiting for me if I could not take the maximum dose of Ciclosporin.
How does one live like this? Don’t use the Ciclosporin and be destroyed in a short time, or take the Ciclosporin and eventually, your liver will fail, and then you will be destroyed anyway?
It’s been a long 7 years.
I just saw read about a Chinese rapper who was in prison for ten years because of attempted manslaughter. He did his time, in his imprisonment, he had time to reflect, to redefine his life, to rebuild himself. Upon of his release, after an interviewer asked what he was going to be doing now. Instead of saying, “I’m going to rap again” or “I’m going to start a business”, he said, “I’m going to change my story.”
I too was in a prison. But mine was very different. My prison was my body, and this prison follows you everywhere you go. Even on days when bodily pains were tolerable, giving me space to think, my mind would be numb due to all the painkillers. When I was young, I could calculate the square root of 4 digit numbers mentally. Today, I can’t remember what I had for breakfast 4 hours ago. It wasn’t such a bad thing, because I could forget that my situation was practically hopeless. The pains and mental numbness cannot compare to what they led to… the idea that I was doomed to a painful journey to irrelevance.
Even in my physical limitations, there are times I contemplated doing something useful. I could write books, I could learn something new, I could do a radio show, I could give tuition from home. But I would also be paralyzed by that nagging thought – what is the point? Humans can endure a lot of suffering so long as they know are getting closer to the light at the end of the tunnel, but that willingness to endure fades away when they know the light at the end of the tunnel is an oncoming train.
This was my prison of body and mind.
But there was another prison on top of that.
The Second Prison: The Walls.
On top of the pain and mental numbness, I had to stay in my room as much as possible. It was my “clean room”, my “bubble”. The four walls of my room were the next prison. My health was so fragile, that I must have the correct balance of environmental factors. This balance point is razor thin. If my surrounding were too hot or too cold, too dry, too dusty, or too humid, inflammations would spread at an accelerated rate. I not only had to make the air conditioner an exact temperate, but I would also even have to open or close the windows to control the humidity at the same time. The air conditioner cools the place but it may turn too dry. I open the window a little to humidify the place but the temperature gets too hot, so I decrease the temperature of the air con, or close the windows. The humidity gets too humid and I keep tweaking… rinse and repeat. Dad would get angry that I had left windows open with the air conditioner. He thought I was absentminded and wasting money by leaving it open. I feel bad. I try to explain. No one believes me. The truth is I was extremely uncomfortable and I was desperately trying to do anything to get my environment to a perfect balance point.
But on hindsight, there was no perfect balance point. I was doomed to uncomfortable pain despite all the changes in airconditioner levels, window openings, the number of times I took a shower or whether I sat in the room half naked, totally naked or clothed. I kept changing everything every 10 minutes because some part of my body would be uncomfortable, and I was fooling myself that perhaps with the next change I might feel better. It’s like you are trying to escape a maze that deep inside you suspect actually has no exits. You will still keep moving to fool yourself that at least you have a chance.
Keeping inside the bubble of my room did not even prevent my eczema from getting worse but it slowed down the rate it gots worse. If I went out of the bubble, say If I went to the book shop – I would go once every two weeks to bring back all sorts of books, or if I ventured to church to serve on drums, or went to my good friends’ home to pray, the inflammations would get worse by 5% a day instead of the usual 3% a day. In short, I enjoy the sun, but I cannot go out. The heat, humidity or whatever pollutants were in the air, though harmless to most, is like poison for my skin. Like a Vampire, I had to avoid the sun and only go out at night. And if I went out at night, it was only once in awhile. The four walls of my room resembled a prison. Worse, it resembled more of a coffin, because my body and soul was dying a little more every day there.
Even if I did go out, it was difficult to enjoy myself. I would be mentally counting down how long I can stay outside before it starts to get very comfortable.
So the physical pains and the futility of countless treatments were one prison.
The four walls of this room were like the next prison.
A prison inside of a prison.
The Third Prison
The third prison was rejection. I already gave some examples in the last post, that I got the least empathy from the people I expected it the most from. Having a disease that many had preconceived but inaccurate notions about revealed those friends who people really exhibited the empathetic heart of Jesus and who valued me and my voice, to those who were only practicing what I called the “churchology rat race” (saying, doing and looking the part to be popular in church), and looking to prescribe and rebuke without really exploring the deep essence of my journey.
When I was doing very well in church and school, many people would ask me to share messages in churches and youth groups. As I became more irrelevant, less people saught me out.
I no longer looked relevant to any of them.
If you can’t impact the world in a positive way, or if the world refused to interact with you in a meaningful way – that is what is true death. Life is not about breathing or amassing materials. There is no point being a billionaire if you are the last man on earth. There is no point being able to speak if nobody wants to hear your voice. There is no point for thoughts if no one wants to know what they are.
Imagine a piece of art. The reason why it means something is because of the way it adds to people’s lives, or the way it communicates a message with people. Everything, a song, a service, derives value on earth because of the connection you make with others. If you drew a “beautiful” sunset since young but everyone you met hated it, you wouldn’t derive pleasure drawing it – it ceases to be beautiful. Imagine you being pinnable of responsibility. Even if you had great material possessions, would those assets be worth anything if no one on earth depended on you or respected you?
But for me, even if I had a million dollars, I wouldn’t have been able to enjoy it at all. The best medicines in the world couldn’t stop my situation from worsening.
I see the world move on without me, and I never felt so incredibly alone.
In the occasional days that I go to church, I sit down at the pew and sit in expectation of God to sit with me.
Most of the time the message spoken by the pastor didn’t inspire me at all. But God honors those who would go into his church anyway, and sitting on the pews, I would have another sermon from God downloaded into my soul. These messages challenge me but I still felt so alone. In a way, not only do I feel different from the rest, I feel that I have a different message spoken to me by God as well. I felt people couldn’t quite figure me out, and they might have been a little awkward trying to talk to me.
This was a charismatic church and having altar calls – calling people to the front to pray for their needs – was commonplace. There seemed to be a call every week. Honestly, I felt there were way too many altar calls for me to believe God was in those calls. Despite my serious illness, I have much respect for what the Bible really says. When God moves, you will know it. You don’t need men to keep coaxing people every week to get prayed for.
When the altar call came, I decided that instead of getting prayed for, which happened dozens of time, I decided to exercise the grace given to Abraham instead. I decided to go up and lay hands on those who needed prayer… even when it is obvious that I needed healing way more than others. Most people would subtly move away to get prayed for by the pastor. Even if they got prayed for by me, they would get another prayer from a more popular, healthier leader. How could I blame them? Imagine a pair of hands with sores and lesions calling forth healing from heaven. Doctor! Heal thyself! I imagine them thinking.
But I ask: What is true faith? The guy that is healthy, excelling in school and praying a lionhearted prayer on the pulpit, or the guy that looks like a walking zombie, that risked ridicule by offering to pray for people’s healing in church?
Actually, both the former person and the latter person was me – when I was younger, I was the prayer leader in my youth church, and later I was in that afflicted state. I know well today that it requires much more faith to obey God’s will and minister to people when you yourself are in obvious affliction rather then you look the shiny part. But the former me got far more prayer requests and accolades, which on hindsight, were empty. People thought the latter me was weird, crazy, and maybe cursed.
On a side note, you might ask, why did I risk ridicule and offer to pray healing on people even when it is obvious I am in terrible shape? Can you imagine the alter call? They want to be prayed for healing or restoration, and a guy with inflammations and lesions approaches to lay hands on them? I could see their discomfort as they slowly shifted towards the pastor.
I did it to exercise my faith in God’s grace.
In Genesis 20, God closed the wombs of the foreign king Abimelek’s harem for messing with the wrong woman. God charged Abraham to pray for Abimelek’s harem to have children. But Abraham did not have a child for so long. When a man is old and is childless in those days, he is considered to be cursed, or unfavored by God. Abraham would have been made fun of many times for being childless, and now he was to pray for someone else to have children? In faith, Abraham did. In the next chapter the Bible records, Sarah conceived.
Abraham got the very thing he lacked when he obeyed God’s will and risked ridicule to claim a miracle for someone else for the very thing that was denied to him.
I did the same in faith. Sometimes, exercising faith leads to temporary embarrassment.
When you are in the covenant of Grace, you can pray for others for the things you don’t have. And when you do, the faith and humility to be willing to be scorned often attracts the thing you are lacking in the first place.
I wouldn’t know this or have the chance to practice this without going through my Abyss. I indeed was ridiculed. Can you imagine how the hesitation, seeing my blood-stained clothes, and wrinkled and swollen face as I reached out my hand to pray for them? And like Abraham, my restoration also came in the end. But that is another story.
Why do people behave this way?
So I felt I had been expelled from the “real world” as well as the place where I used to feel the safest – the Church. This was what I think was the darkest part of the Abyss.
I learned that if one is rejected by the representatives of God long enough, it is only a matter of time before he thinks he is being rejected by God himself.
In the darkest part of this Abyss, I had to retreat into my imagination since that’s pretty much all I had left. In my imagination, I put God on trial. “How could you betray me?” “Are you even who you say you are?” “The atheists were right, you don’t exist.” “How can I solve my problems if there is no God, the best medicines money can buy can’t solve it?” “Maybe I need to pray, even if I don’t feel anything.” “I hate you.” “But I need you.”
The rejection by people made me feel indignant. Not because they have criticisms for me, but because I felt that much of it was unfounded and self-centered. One hurtful comment came from a family member who kept telling me that it was irresponsible of me to keep taking Ciclosporin. “How can you keep taking it? Don’t you know it will kill you? So many other people I know with eczema cope without it, why can’t you?” This person, like many, condemns me for taking this treatment path but was totally unable to provide a better solution.
It was bad enough that taking it was my very last option after years of treatment failure, now you think I am taking it for fun? Jesus is the complete opposite. He doesn’t condemn, He just saves you. Others condemn but can’t even solve your problem. This was another reason why the Abyss drove me to Jesus.
Then I realized that for most, people are quick to fit your situation into a box that they can understand so that it will validate their own sense of reality and their successful stint in it, even though the truth can be entirely different. By entertaining the unknown, it will threaten their worldview and presuppositions.
Remember what some of them said? Here’s a recap.
“Ken, you would be better off if you had the discipline to follow the doctor’s instructions.”
“Ken, you obviously are too lazy to take care of yourself.”
“Ken, someone your age should have had a career by now.”
Let me reinterpret what they were actually saying.
“Ken, you would be better off if you had the discipline to follow the doctor’s instructions, like me.”
“Ken, you obviously are too lazy to take care of yourself. I’m doing well because I’m not lazy.”
“Ken, someone your age should have had a career by now. Like me.”
Years later, once I experienced restoration, I look back and understand that we all have limitations, and their responses are their ways of responding to those limitations when triggered by events that uncover those insecurities. As I became fluent in understanding my own limitations and place before God, I understood more of Henri Houwen, reflections on healing:
You keep listening to those who seem to reject you. But they never speak about you. They speak about their own limitations. They confess their poverty in the face of your needs and desires. They simply ask for your compassion. They do not say that you are bad, ugly, or despicable. They say only that you asking for something they cannot give and that they need to get some distance from you to survive emotionally. The sadness is that you perceive their necessary withdrawal as a rejection of you instead of as a call to return home and discover there your true belovedness.
– Henri Nouwen, The Inner Voice of Love, Understanding the Limitation of Others
Just a couple years back, I was the same Kenneth… with the same soul that yearned for the love of Christ, and who tried to make the world a better place. Only my externals have changed, how is it that people can judge my character and my soul so differently? The same Kenneth that excelled in Cornell University, went on share Christ on the street, and was a chess champion is also the same Kenneth that is trying to fight his way out of an unwinnable situation. Instead of empathy, respect, I got scorn and indifference.
How fickle the world really is, and how silent God seemed to be in the midst of prolonged suffering and what seemed to be injustice led me to dissonance. Yet, as all these crushing realizations were swirling in my subconscious, I also asked myself if I was exactly like that with other people. Did I try to box someone in based on my own limited knowledge and experience? Did I put enough effort into exploring before reacting?
I knew that I too have been guilty of exactly this as well. It just took me to eat a big dose of condemnation to put me in this place to be reflective of it.
Yet, didn’t Jesus go through the exact same thing? How could, in reality, the most perfect person to exist be accused of being a criminal? The reality is that to the Christian, Jesus is the Prince of Peace, Counselor, Merciful Son of God. Yet, to the early Jewish establishment that didn’t receive Him, the Talmud calls him “as a frivolous disciple who practiced magic, and turned to idolatry” (Sanh 107b) and was a “bastard born of adultery” (Yebamoth 49b). The God that tried to save them and how deserved all of their praise only got condemnation in return. God knew this would happen, and He gave His life for them anyway. What sort of God is this? I was hating the world, but I was being won over and humbled by Jesus.
But is this part of what it means to “participate in the sufferings of Christ’? (1 Peter 4:13) To be unfairly judged to the point of condemnation by the world and being unable to stop it? If so, this was too much to bear. I am not Jesus.
Jesus has the infinite power to beat death and prove everyone wrong. But I cannot, and hence, I was crushed by the collective worldviews of people that had little room for me. Like Job, there was no way to change the minds of the people around him. They thought that if Job was cursed, he must have deserved it somehow. After all, there was nothing wrong with God, there was nothing wrong with us, so everything was wrong with Job. This was not much different.
Being condemned without being able to change people’s minds by my own efforts was the last prison.
So I was in a prison within a prison within another prison – the Tri-State Prison, for about 2 years, between 2007 and 2008.
In those 2 years, I would try to read as many books as I could. From atheist books like “God is not great” by Hitchens, to the Bible, to Phillip Yancey’s The Jesus I never knew, Freakanomics by Gladwell, and eventually tens to twenties of books of the financial markets, like the Intelligent Investor by Ben Graham. I read books from philosophy to Harry Potter. Every month I would go to the book shop, under the cover of the cool darkness of the evening, and buy a couple of books. By the end of those 2 years, my library would literally have more than a hundred books.
When the knowledge of books didn’t bring me any lasting answers, I would drown my waking hours watching trashy entertainment on YouTube, or playing computer games. World of Warcraft (WOW) was what I played the most. After 30 weeks of playing it, the biggest thing I learned is that WOW hunters are really squishy, and that two clan members, one from USA and the other from Australia, can actually fall in love even though they never met in person. She cheated on him weeks later, of course, and in the game, he and I perched on a high mountain overlooking Azeroth as he poured out his woes to me.
But when reading hubris, or playing roleplaying games didn’t bring any lasting satisfaction, I would end up in despair again. Forcing me to contemplate begging God for help. But how could I? He betrayed me. I felt like a battered wife going back to her abusive husband because she had no choice… he pays the bills and I would starve without him. The best doctors couldn’t save me so if there really wasn’t a God then I was truly doomed. This despair – seeking God – feeling betrayed – doing hubris to distract – cycle would repeat again. At least over 100 times in that decade. My mind was so abused that even today, years after my redemption started, I still have a form of PTSD. Some memories are triggered by even mundane things, and tears might flow uncontrollably, or I might freeze in my tracks for a while.
It came to the point that, I almost wasn’t sure if I even wanted to recover anymore. Even if the eczema “magically” subsided, how long would it take to rebuild my career from scratch or build up new friends and family? Moreover, through this sickness, I have seen how superficial, selfish and shortsighted the world can be. The world was not a friendly place for me. I would rather the disease continue to get worse and take me to my true home. I don’t belong here. At least I would have my rest in heaven, or if there were no heaven, even nothingness is better than living in a world that has left me behind.
With each cycle, and as madness loomed around the corner, my knowledge of God would increase, and I would start seeing Jesus in a deeper way. The more that happened, my place in the world would increase, unknowingly. And, what was longed after for over 20 years started to materialize – healing.
More in the next post, Part 4: Redemption.