Lost in Limbo

"What are you trying to say, Doctor?"
I had done this many times, far too many to be healthy, and I was supposed to pull this off easily. That was what I kept telling myself. But it never got easier. If it was possible, I would have looked anywhere but at her eyes. They expressed her fear, her anguish, but worst of all, a glimmer of hope. Hope that I had to crush with what I had to say.
"There is nothing much we can do. His organs are failing and he may not have much time left."
The snuffed hope was more than I could bear. I shifted my eyes from the lady in front of me, her shoulders already shaking with sobs she was failing to repress, to the subject of our conversation. The man was lying on the last bed in the ICU, immobile except for the regular rise and fall of his chest, in time with the sound of the ventilator attached to him via an endotracheal tube. Twelve breaths per minute, if I counted, just as the setting on the machine. He no longer could breathe on his own. The left half of his shaved head was swollen, the skin over it glistening with tension. The sutures holding the surgical wound were crusted with dried blood. Beneath the swollen skin surrounded by the sutures, was his edematous brain, covered only in a piece of cloth-like tissue. That part of the skull had been removed to enable the edema to expand without compromising the rest of the brain.
But the craniectomy performed three days earlier only helped in prolonging his life for a few more days. The impact from his accident had caused a massive intracranial bleed, and with that much dead brain tissue, he would be paralyzed for life even if he did survive. Even with his face swollen and bruised, the patient looked young, in his late thirtees. Much too young to die.
And his family surrounding his bed agreed with my unspoken thought. Although they were vocal about it. They were conversing rapidly in Cantonese, and even though I could not understand the words, I could grasp its meaning. They were angry, and anguished, and could not accept this revelation.
The lady in front of me made a small sound that snapped my attention back at her.
"But…but he was doing so well after the operation. His eyes moved when I called his name. He even moved his fingers…" The patient’s wife was having a difficult time holding back her tears.
In truth, even my nurses would attest that the patient had not moved one bit post-operatively. Even with extreme pain stimuli that would have had other peoply jumping, cursing with agony, we could not elicit a response from him. But people needed to cling to hope so badly they were willing to see anything, believe anything.
A man who had slight resemblance to the patient’s wife stepped up and steadied her shoulders. He looked at me with a defiance that bordered arrogance. "What about lobectomy? You haven’t tried that. When he gets better we can take him home and my sister can take care of him."
The drawback of Internet. Freely obtained information makes people think they are smarter than others. Frankly, I sympathized with the lady sobbing in front of me, but I would not have myself talked down by someone who didn’t know what he was saying.
"You want us to remove part of the swollen and dead brain," I replied in clipped tones. "Then what? If he survives, Mr Kong will be a vegetable for life." I took out the patient’s CT films from a side compartment of the desk at the foot of his bed and showed the man the bright image occupying most of the front part of the patient’s left brain, extending to the back, which signified the extent of the bleed prior to operation. "He’s right-handed. Which means his left brain is dominant. If we remove that part of his brain, and he survives, he won’t be able to talk, think, or even function."
Realizing I was starting to raise my voice, I took a deep breath to steady myself. And I studied the man’s expression. It wasn’t arrogance; it was the last remnants of hope trying to set foot. And with hope crushed to abruptly, the man just looked older, and tired.
My voice was softer when I continued, my tone kinder. "I’ve talked with your sister earlier. She is a housewife and she has three children to take care of. If, if your brother-in-law survives, he will be lying on a bed for the rest of his life."
"But we can visit them every day and help out," a lady who could have been another sister interrupted.
I looked at her, compassion in my face as well as my voice. "Yes, but for how long? Whatever we do, his brain has already stopped functioning. If I take out that tube in his mouth, he will stop breathing."
A collective gasp. More rapid Cantonese that I couldn’t understand but could comprehend the meaning.
"You can’t do that! It’s illegal!" The brother who was supporting Mrs Kong stood straighter with anger.
"Yes it is," I agreed. "Unless if Mrs Kong, and only Mrs Kong requested for it." I had to emphasize the importance of the decision, even when I could see it was killing her. I shifted my gaze to the sister who spoke to me.
"And if he survives, he will have to depend on a machine like this to breathe. Mrs Kong has three small children to think about at home, and you’re asking her to take care of Mr Kong and at the same time find a way to make money to support her family. You may come and visit, but she has to live with this the rest of Mr Kong’s life."
I knew it was harsh, even if my voice was anything but, yet I had to show them the reality and the gravity of the situation.
"I came here to tell you that his heart is also failing. You see the small tubes connected to his arm? He’s on two inotropic agents to help his heart pump, but even those are not working. His heartbeat is slower, and his blood pressure is dropping." I showed the whole family the readings on the patient’s cardiac monitor.
Mrs Kong cleared her throat to get my attention. She looked so much older than she was supposed to be; dark lines circled her tired eyes, which are red from all the tears, and her face was gaunt with fatigue. She was also wearing the same clothes I saw her wearing the day before.
"How long?"
She did not have to elaborate. I was expecting this question.
"I’m not God. I can’t tell you hor much longer he has. But he may not last the night."
And if saying it did not break my heart enough, I had to watch the lady before me crumple and wail loudly, a keening, high-pitched sound that would likely haunt me for years to come.
I kneeled in front of her and whispered. "I’m sorry. I’m sorry."

I want to be able to write again!

Goddamnit, I used to write stories, translating the ideas, and scenes going on in my head, into coherent words that make up actual stories! I even used to write stories for the sake of writing. Of course, those kind of work just end up down the drain…
But the point is, I want to write!

To me, every person has to leave a mark, a legacy, before they die, lest they be forgotten. Parents have children to continue their line, painters have their masterpieces admired even after hundreds of years go by. I, personally, want to leave my mark through an actual novel. Not just a mere novel, but one that actually matters. One that has meaning and measure, that touches at least one life.

Enter the nightmare of getting an English novel published in Malaysia. I have asked around. Most Asian-based English literature are actually translated into English, from their native languages. And it is not easy to penetrate Malaysian market with an English literature as it does not sell well. Not many publishers are willing to take the risk.

Then comes the permanent writer’s block (or so I keep telling myself). All this while, my stories are Americanized, when I don’t write fantasy. My characters were mainly Caucasians, as it was difficult for me to comprehend Malaysians conversing and thinking fully in English. It was just weird for me. So during high school, my entries did not win anything. It may be because my writing sucked, but all winning entries involved Malaysian characters. The judges wanted (and still want) stories that are steep in Malaysian flavor. I even tried submitting my works to Silverfish Books, a Malaysian-based publication house that produces an annual anthology called Silverfish New Writing. Again, all stories have their own local flavor, and with the really good ones, I could actually feel like I was in Singapore, or Vietnam, or even here in KL while reading them. And these stories were originally written in English!

A particular story used to reside in my head, and I kept developing my characters, as well as the plot, and storyline. But my teachers and mentors had always advised me to write about things that I know well, things that I can describe without having to tax my imagination, for me to be able to write well. And that had me thinking. I have been living a comfortable, if sheltered life. I have no stories of war and conflict to express, neither have I any experience of poverty or difficulty growing up. I have had fond affection, but never the passion of love and lust (although, surprisingly, people seem to like my love stories…). But what I do have, I have taken for granted. I have always scorned TV series about doctors and the medical profession. Some are really good show, but they invariably paint a picture prettier than reality. This is my field; I know it well. I could really write something meaningful that can leave an impact.

And indeed I do have a complete story brewing in my mind. Written correctly, it could impress a powerful message. But it would mean honest study and research, and none of this instinct-only stuff. Cringe!

Come to think of it, I still remember vividly an event that occurred when I was in Standard 5. I have forgotten my English teacher’s name (I stink when it comes to names), but I still remember what she looked like. Tall (well I was really short at that time!), skinny, with long, curly ebony hair that she wore loose. She wore these big spectacles, and she had an-almost buck teeth. She was quite dark, even for an Indian. Anyway, back to the point. One day she was teaching us past tense, and it was something about woodland animals (sigh, these silly workbooks). So she asked us to choose which one was right, to complete the sentence: (something) to ______ (pick, picked, picking). And I answered ‘pick’. And right there, in front of the class, she scoffed at me and said "Wrong. That is present tense." And I was adamant that my answer was correct. When she asked me why, I could only say that it sounded right (bear in mind that at that time, I was in love with Enid Blyton’s books as well as Narnia). And she laughed at me, and naturally, the whole class joined in. However, she called me to her desk the next day, and quietly told me that I was right. ‘To’ is followed by a present tense, as the action has not yet taken place. And I still remember the way she looked at me when she said that. I still hope it looked like frank admiration. Of course, she then informed the whole class, but no one actually cared. But that was not the point.

So. Back to the present. The Story (with capitaled S to emphasise its importance and impact). I’ve given all the excuses. I’m now left with the final hurdle to jump.

Me.

I’ve been having these weird and (to me) disfiguring rashes that started off on my left cheek. That was mid May. Initially I thought they were just zits gone wrong. But the rash got worse. It was itchy as hell!
So I went to a Dermatologist in the hospital I work in (one of the perks of working at a Specialist Hospital). After lots of questioning, she came to a conclusion that it was mostly taenia faciei, which means face fungus in plain English. I was like "WTF?! - don’t tell me it’s from Keeno for sleeping on my bed for so long…"
I was prescribed anti-fungal cream, and when I informed my Head of Department, she went "How is it possible? You’re a young man, not immunocompromised." And i went "I dunno…"

For three weeks I applied the cream, almost religiously. We’re talking about my face here, dammit. But nothing happened. And much to my relief, the scraping she took came back as negative. I was fungus-free! But my dermatologist was puzzled. The diagnosis now changed to contact dermatitis; ie I was allergic to something. She had to ask me "Sorry to ask you this, but do you wear makeup?" for which I answered plainly and simply "I don’t even use talc." So maybe the OT mask was the culprit. But I’ve been using the same standard-issue brand for years. Hmm…so the anti-fungal cream was out and in came the steroid cream. Which, for some reason, made it worse. The itchiness was barely tolerable, I kept waking up every two, three hours finding out I was scratching my cheeks, my chin, my ears. I felt like a flea-infested dog.
I went back to my dermatologist after a week. I had stopped applying the cream after a few days, and medicated myself with antihistamines, which made me drowsy almost all the time. Drat. She consulted a senior Dermatologist: it was time for a biopsy to be taken. And since I’m working in Plastic Surgical Department, she suggested that they take my biopsy, since the surgeons achieve a more cosmetically pleasing result. Fair enough. I went straight to Hasnul, my senior registrar. We arranged for a date for biopsy.
And OH MY GOD! I’ve always operated on patients, telling them the local anesthesia injection would hurt, but I had no idea how much. And now I can relate with my patients. Damn that hurt! But I’d rather bite my tongue off than scream like a girl (to hell with being politically correct!). And the scar is barely visible. I’m happy with it.
However, I am not happy with the biopsy report. I can still remember the day I got the result.
It was August the 5th, and I had taken leave cos my face was just plain itchy. My phone rang at about 8:30am, and a lady pathologist informed me that my report was ready. So I asked her: "So what do I have?" Her reply was: "Confirmed. DLE."
Discoid Lupus Erythematosus. The one diagnosis I really dreaded. So I called Farrah-Hani, my registrar and good friend (sorta like a big sister to me), and informed her I was going to take the rest of the week off. She kindly told me to rest and she would sort out the 2 calls I would not be doing. And a few minutes later my Head of Department called me and gave her condolences, and told me to rest and sort this whole thing out.

Before I go further, let me give a bit of light on this DLE thing that has set me off course. Discoid lupus is a form of an auto-immune disease, where my immune system attacks my skin. It is the mildest manifestation of lupus, and only 5-10% of patients would develop Systemic Lupus Erythematosus, SLE, which is a full-blown autoimmune disease that attacks the whole body from the inside. It usually manifests on the face, being the most sun-exposed area. Something about UV light altering the skin’s DNA so that the immune system attacks the skin. It presents as itchy rashes, and if it occurs on a hair-growing patch, that area becomes bald. Meaning, if it occurs on my scalp, I will have bald patches. And this disease recurs and relapses. It may take months to years for an active attack. When the lesions heal, it is by hyperpigmentation or by scarring. The bald patches usually remain bald.

And let me describe a bit about myself. My vanity borders narcissism. I am not good looking, but I would - by reflex - check my own reflection on any surface that gives off a reflection. Those who know me know that I love dressing up. Not using dresses, but smart-casual wear, or sometimes the grunge look, depending on my mood. And I don’t dress up to impress people, but to make me feel good about myself. I am of average height, slightly thin, with no distinguishing features. It is my sister who looks good on all the photographs, and who is popular everywhere she goes. It is my brother who has the height and build, and looks good in anything he wears, even when the clothes are mine. I would always be behind the lens, simply because I don’t look good on camera. Hell, I don’t think I look good, period. But I love the way I carry myself. That, and how under-aged I look. And I would freak out if i even have small zits, much less the major zit breakout when I was sitting for my final exam.

So you can just imagine what my reaction was when I got the diagnosis. This is a lifelong disease, which can only be controlled and not cured. And the lesions may just get worse every time my DLE recurs. My world came crashing down. And I kept on scratching to relieve the itchiness.

My dermatologist asked me: "Are you depressed?" And one of my closest friends, Zay, who suggested that I came to Dermatology in the first place, told me that DLE is almost nothing to worry about. It’s not a systemic disease.

And these are my thoughts, that I’ve been keeping to myself, and cannot bear to tell my mom:

To me I will be disfigured for life, no matter if people say otherwise. I used to check myself in the mirror to make sure my tie was straight, or my hair was in the right place and spikiness, or to adjust my shirt. Now I look in the mirror to check if the lesions are spreading (which they are), or to apply the steroid cream or sunblock. I avoid looking at mirrors whenever I could. When I try new clothes and almost ending up buying them, I inadvertently look at myself, and think "Why bother? I still look bad." And I’m dreading any itchiness on my scalp. I really do not want to get bald. And now I get people’s attention, but for the wrong reason. How would you feel if people give you a funny look and ask you whether your illness is infectious? I wake up lethargic cos I can’t sleep for more than 3 hours without waking up all itchy. And I have to avoid the sun. Me, who love being under the sun, the clear sky, and the beauty of the land with the display of light and shadows! Photography is one of the only things I really have passion for, goddamit!

So do I fell depressed? I sure am on a straight road towards it. I don’t go ranting about "WHY ME?! THIS IS NOT FAIR!" I have lupus, so I have lupus. No use blaming anyone. But I do keep on asking, of all the places, why my face? The lesions are going to get worse with time, and I am positive the full depth of it will finally hit me when i find a bald spot somewhere. Touch wood.
To everyone else, it’s a mild disease; nothing much to worry about. To me, it’s life altering. If there is a reason for my getting it, I may or may not find out. But the full depth of what’s going on in my head, it will break my mom’s heart if she ever finds out.