letters to a modern-day Job

This page is where I share the more practical aspects of my recovery from chronic eczema (atopic dermatitis).

What is Eczema?

Eczema, which is also known as dermatitis, is a term that is applied to a range of persistent dry skin conditions. The variation of the conditions between people can be considerable, in mild cases of eczema the skin is dry, scaly, reddish and itchy. People suffering from severe cases may have weeping, crusting and bleeding of the skin. The irritation can result in constant scratching that causes the skin to split and bleed and also leaves it open to infection. Left unchecked, severe eczema can lead to other complications and a shortened life.

There are studies that show that the standard of life for severe eczema patients are comparable to kidney dialysis patients. Dialysis patients are forced to be bound to physical locations for treatment places 3-4 times week while having to have stringent diets and routines. Chemical imbalances causes a host of symptoms like tiredness, dizziness, nausea, migraines etc. Their existence is painful, diminished and limited.

Eczema inflicts many. It starts with some redness and itch on the skin, and when it’s full blown, it looks like you’ve got second degree burns over your body. I’m sure you know at least one person that has eczema – and therein lies the potential to misunderstand people with it.

You see, eczema, like asthma, has vastly different degrees which cannot be seen with the naked eye.

Why is it some people with asthma gets attacks only once a year, and only after much exertion of themselves physical in the wrong place (like a field full of pollen)? While others, can be hospitalized and close to death if he just inhales some peanut residue? It’s not the coughing or wheezing that determines how bad the asthma is, all asthma patients will have severe coughs depending on the level of trigger. It’s just those tragic cases are the ones who gets triggered by so many things, that he can’t possibly cope with normal life. How much sports is too much sport? How long can I stay in this garden? Is it only peanuts? The one who has so many low-level trigger points  will be crippled in life. If your doctor is honest, he will tell you there is a great deal of mystery behind auto-immune diseases.

Similar to asthma, you see on the surface is not a true reflection of how bad a person’s eczema is. The superficial inflammations might tell you something how long the trigger and widespread the is, but it doesn’t tell you how weak internally the person’s immune system is. The key question is how easy it is to flair up, it’s frequency and how much difficulty it takes to knock it back down.

The trigger first manifests itself as redness and itch on the skin. When it is full-blown, acerbated by lack of sleep and exercise (it’s too painful and itchy), it can look like 2nd degree burns. But an eczema person’s skin is not the same as a healthy person’s skin. By order of strength, one can use antihistamines, followed by steroids, then by other families of anti-rejection medicine to knock down the inflammation. The problem? These solutions are temporary and actually kill you slowly. By 2009, it almost killed me.

Kill you? How so?

For steroids, you put on weight easily and your blood pressure must be monitored. Stronger drugs like ciclosporin will damage your liver over time. Worse still, just because the inflammation was kicked down by drugs doesn’t mean things are back to normal. Every time an eczema patient has a flair up, it weakens the skin barrier as it gets more “porous” and damaged, allowing more allergens to pass through. Hence, the longer you can’t control the eczema, the more easily triggered it gets. It is truly like quicksand where the longer you struggle in it, the harder it is to escape.

I want to write something short and concise, but I soon realized that I would be denying much gain to my readers if I did so. For those who are struggling with chronic problems, lets journey together; for those who are on the outside looking in, I hope this helps you to empathize with those that are struggling in a similar way.

My History

8-years old. I obviously had eczema. Other kids used to make fun of me and call me “rash king”, but I had patches of healthy looking skin (young and elastic). I remember being sad that my mum had to work so much harder to clean my blood-ridden bed-sheets. The steroids I used were not that strong. It would always flair up, but the medicine could knock it down in a week. Despite the discomforts and feeling conscious of my sores, I was still a confident, loving child.

16-years old. I was one part brash, one part adorable, one part egotistical, one part comedian. But by this time, the eczema flared up more frequently. Not only did I have to increase the steroid strength, I had to introduce anti-depressants and anti-histamines as well. Additionally,  the medicine would take 3 weeks to knock it down somewhat… a vast increase from 1 week. It would really bother me that I was starting to be a liability to others in the family too. All my bloodstains on the bed and T-shirts all had to be cleaned, and I started to be reluctant to go out of my room. However, my Christian faith helped me maintain my confidence despite my declining looks during that age where you are trying to find an identity and impress the opposite sex.

18 years old. This was when I first considered the existential problem I had with eczema. Prior to this, I was quite positive in spirit and believed in God – the eczema didn’t stop me from achieving my goals in competitive sports and excelling in studies. At 18, the eczema started to be uncontrollable no matter how much steroids I used. I tried to stay indoors more too. Not only was it not enough, it was very difficult emotionally to deal with the realization that I might not be able to be normal. I could not play basketball or just take the bus whenever I like. Everyday I had bloodstains on my shirt and I smelled bad and attracted flies. Stray dogs would come to lick my wounds if I passed by them. I was taking an average of about 3 days of medical leave a month. For the first time, I had to give up playing basketball just to stop sweating. Being a walking zombie that was forced to lead a bubbled, sedentary life was soul-crushing. But even then, because I had some pockets of time where it wasn’t that bad, but the problem is that I couldn’t figure out which of the 100 over variables controlling my life got tweaked to produce that change. In those brief respites, I guess I’ve been blessed with enough spirit and mental abilities to to be able to achieve somethings in life although it was very exhausting. There were many days I was depressed, and in physical pain. In this vulnerability, this was the year I really thought about what it meant to be a Christian. Accelerating this process was also seeing how a girl I really liked liked me very much, but changed her mind a year later after I became more sedentary, sickly and overweight. My popularity declined in tandem too. A stud to mud. A hero to zero. A stallion to living redaction.

This was the first time that I felt I was thrown into the deep end into the nature of reality in the world we live in. Combined with my increasing exposure to science, I found myself as a living breathing question mark. If the world is superficial where everyone is bound by selfish genes and competes for scarce resources within a framework of natural selection, then am I the statistic that is doomed for failure? This was the first of my many existential questions and I had many sick days at home to reflect on these.

Yet somehow, I actually did well enough to go to an Ivy League University to study! Amazing what God can do with the weak and helpless. When my biology teacher found out I got straight As (I was averaging Cs, and an E for Biology all the way before my final exam), she told me, “I believe more in God now.” This actually reinforced my prior decision to follow God – how could I have the best results in academia that I ever had when I was in the worst state position to do so? It didn’t make sense. Yet, the Bible is made out of these types of stories. I just didn’t expect for my own life to be a story in the same vein was the passages I read as a young passionate believer.

The poison of liberalism. Cornell University was a major blessing and major curse at the same time.

 

24 years old.

Coming back to Singapore, the next couple of years was even more difficult. If the eczema couldn’t be managed in Cornell, it definitely couldn’t be in Singapore. Things like stress, dirt and being unable to have a good healthy routine in terms of great diet, exercise and uninterrupted air-conditioning make eczema worse, but I can tell you that there is something in the air in Singapore that is bottleneck to recovery. It’s the great humidity, and chemicals, and thus, it’s unavoidable. How can you avoid air?

So the viscous cycle worsened. The more triggered the eczema got, the more inflammations I had. The more inflammations I had, the more easily triggered it could be. The strength of the medicine continued getting stronger and stronger. There were pockets of time where I was normal-looking, and I was achieving great things. On paper, I was doing fine. I was highly sought after having graduated with honors from different companies. Although I eventually took a job as an engineer in an MNC, my mind was already in silent desperation, because I realized that the eczema was getting worse, and that the last 10 years of life saw no true remedy.

What happens if this decline continues?

This was the silent but deadly thought deep in my mind. I was grasping to all sorts of positive thinking, reaching deep into Bible promises, and spending more time with God. I would still see lucky breakthroughs in other areas of my life, like having favor with new people that I meet. Yet there was a silence in regards to my physical health. The eczema rampaged out of control, causing me to quit my job as and engineer. It was too painful, and it was causing too many sick days.

In just 1 year into my return to Singapore, my already vulnerable body that has taken decades of eczema abuse went “overdrive”. One of my buddies Jimmy, visited me one day and was speechless. I had eczema over 70% of my body, and that wounds were ugly to look at. I couldn’t even open one eye properly as the eczema spread all the way to my eye lids. Soon, I caught a viral infection in one eye. Up to today, the cornea is so scarred that it’s blind. The eye specialists, all 4 of them, refused to operate on my eye, because my eczema was so drastic. No point replacing the cornea if inflammations will overtake it again, they thought. So I’m literally half blind too. Ha.

It was at this point my doctor capitulated and put me on what was considered drastic action – the 300mg of Ciclosporin daily, which was the maximum dose to my body weight. This was an anti-rejection medicines taken also by organ transplant patients. After taking it, my body feels a little weird, you can feel like there’s a concentration of something in your bloodstream. The good news is that it shuts down the inflammations by dulling your immune system, and in 1 week after taking continual doses, the eczema dies down and my whole reality shifts monumentally again. Instead of being in continuous pain and having to live in a bubble, and being obsessive-compulsive in terms of making sure I won’t go outdoors for more than 1 hour and I would have a cleaning, showering, creaming routine every 3 hours, I would feel normal again… and able to consider living like a normal person, being able to go out when I felt like it without fear of my eczema triggering and raging my body.

The “solution” is as follows. When eczema is active, it’s a viscous cycle that will continue raging. The eczema causes inflammations and wounds, the inflammations and wounds make it easier to have more inflammations. This is the “death spiral”. There’s actually no end to it, unless you eliminate all the trigger factors. But what if you are like me, where almost everything is a trigger factor?

I was to use the Ciclosporin to my immune system out. My flesh clears up and the inflammations go down. Once my flesh is “clear”, this is the real test. I have to find a way to manage my life to control the triggers so that I can have some semblance of a managed life. It’s obvious that I will never be normal again, or have perfect skin, or the perfect body (you can’t exercise regularly when eczema is active, it’s too painful), but at least stop it from raging out of control.

The disturbing side.

The disgusting news is that this reality is fake.

Remember the test from management control?

I drop the ciclosporin to 200mg. But I am still supplementing the ciclosporin with steroid creams, antihistamines and antibiotics. It’s somewhat manageable, but my standard of living is substandard. I had a life that was “possible” but very absurdly inconvenient.

I cannot reliably make any plans to go out, because I can never know when the eczema will get worse to the point of the “death spiral”. I can barely manage work as it is, taking on an average 4 days of sick leave every month. So on the weekends, I am so hesitant to make appointments with people, because I am so afraid to cancel on them; and when I cancel on them, it will always be last minute. I have lost a couple acquaintances that way because they could not understand how erratic and unmanageable my situation was, thus they seemly judged me as unreliable and flaky. But, if I don’t make appointments with people, or assume responsibilities in church, what life would I have? Is it even worth living?

However, when I drop the dose of ciclosporin to 100mg, it is not even enough to be at a

25 – 30 years old.

Einstein said that the idea of insanity was doing the same things and expecting the same results. This echoed true in my life.

People did not realize that those pockets of normality was only temporarily bought with steroid injections or ciclosporin. When I cut away those drugs, the eczema would come back as quickly and strongly like when it first began. These drugs were fake hope. The oscillating emotions of hope and disappointment was wearing me very thin.

I soon realized that I had a Sword of Damacles over my head. When will the final collapse come? When the body is damaged so much by the inflammations and heavy medicines that I will be bed-bound or crippled in pain? At the very back of my mind, no matter what I did, who I talked to, and what residual achievements I was squeezing out with my God-given talents, I knew the day would come where all ideas of “life” on earth will be challenged. Is life worth living if I became a pariah, double bent in pain and hidden from the world? The most tragic thing was not really the pain, but that no one knew I felt this way. New friends just saw me as an overachieving, smart, charismatic but moody and eccentric ivy-league guy. But inside I was second guessing my past, who God was, and if there was real future for me ahead. Is there a purpose for me? Or will I die a forgotten soul?

The fight for my purpose had begun, and it was a Secret War.

To be continued…

 

 

 

 

 

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