The Tunnel of Darkness

I've always prayed that I would be the luckiest guy in the world. So lucky that I would win that 1 in a million lottery ticket and be a multi-millionaire!

This year, seeing as how my birthday was coming, I prayed extra hard. But somehow somewhere along the line, my prayers were misinterpreted. On my birthday, instead of becoming a multimillionaire,  I was diagnosed with the rare 1 in a million Steven-Johnson syndrome (SJS) secondary to either a viral infection or some new protein shake I tried. 

Steven-Johnson syndrome (SJS) is an autoimmune disorder whereby my immune system misfires and attacks my own skin instead. A layer of my skin called the epidermis dies and peels off while the mucous membranes necroses too and sloughs off. 1 in 4 patients die and being blind is one of the many side effects.

 Image taken from www.diseasesforum.com. Notice the sloughing of skin which is typical in SJS.

Image taken from www.diseasesforum.com. Notice the sloughing of skin which is typical in SJS.

 Image taken from www.diseasesforum.com. Notice the blistering rashes in the torso and arms which also is typical in SJS.

Image taken from www.diseasesforum.com. Notice the blistering rashes in the torso and arms which also is typical in SJS.

 

I spent over 10 days hospitalised covered in blistering rashes over my body and face. The worst part was the mouth, lips and tongue which were covered with open bleeding ulcers. Every twitch of the tongue brought a new wave of pain to my already overloaded sensory system, what more drinking and eating. It was so painful that a nasogastric tube was considered to feed me as as the agony was mind throbbingly overwhelming.  

 A picture of a healed ulcer on my tongue. My mouth was filled with ulcers like that.

A picture of a healed ulcer on my tongue. My mouth was filled with ulcers like that.

 

The cause of my SJS was initially thought to be an atypical presentation of herpes zoster (chicken pox) infection. However, the presentation was so atypical that Herpes Simplex virus was thought to be the cause instead. So my diagnosis was Steven-Johnson Syndrome secondary to Herpes Simplex infection. I hated that diagnosis from the very beginning.

Herpes Simplex virus is a sexually transmitted disease. And with that diagnosis carries a stigma, an implication, nay! An accusation that I've been naughty and this whole episode was my fault! I resented that diagnosis with what little energy I had. I probably would have minded it less if I really had been naughty but I was innocent and I knew it! But good thing further blood investigation revealed that Herpes Simplex wasn't the cause thus relieving me from this allegation. So now we are back to square one, what was the cause of my SJS?? It is of tantamount importance that I know the cause so I can prevent another episode. 

 Blood results ruling out Herpes.

Blood results ruling out Herpes.

 

I would describe this horrendous ordeal as being in a endless pitch black tunnel. All the uncertainties, the doubts, the worries and above all the pain envelops you, squeezes you, entangling you and ultimately crushing you. 

Being no stranger to pain and adversity, I gritted my teeth and tried doing the necessary but the act of gritting my teeth caused too much pain so I did the necessary without gritting my teeth. 

I disciplined myself to drink, to swallow medication, to clean the ulcers and to cleanse the rashes in hopes of getting better. But the walk in the tunnel of darkness is a painful and lonely one, I was at times at the verge of lying down and allowing the darkness to consume me.

 

 

But thank God for my lovely mother and sister. They were like a flower of light in the darkness, guiding me on my way to resurrection. They came all the way to the hospital and took care of me. They helped bath and feed me, they helped make honey water to sooth the ulcers in the mouth and all in all help make the recovery so much better. 

Also, all the visits, messages, cards and calls from my friends, juniors, colleagues and relatives meant a lot to me. I was so touched that all of you cared and went all out to provide moral support. It was the thought of all of you that prevented me from giving in to the pain and illness.

 

 

The doctors and nurses of Hat Mizan and also the professors and lecturers of the Faculty of Medicine and Defence Health played an extremely important role in my road to recovery. They ensured I had the best possible care available, making sure that all the side effects of SJS were dealt with promptly. They were like angels guiding me to the light at the end of the tunnel, allowing me to hope and aspire once again. 

 

 

As much as I wondered what I did to deserve this illness, I too wondered what did I do to deserve such kindness. Everybody went all out to make things better, from my mum and dad, to the cleaners in the hospital, to friends and relatives, to even doctors from different departments. From honey, to get well cards, to mangosteen juice, to gingival gels and to home made soups, I am truly indebted to each and everyone of you!

 

 

 Picture credit to Mr Hairul Ismail.

Picture credit to Mr Hairul Ismail.

This whole ordeal put me out of action at the most important time of my career, my commissioning. After 7 years of med school and military training, this commissioning is supposed to be the climax, the highlight of our journey where we officially become proud military doctors of the Malaysian Armed Forces. The commissioning is the epitome of military grandeur, the Agung himself will be present to bestow our ranks on our shoulder. This day of celebration has long been awaited, this day where we dress in our smartest uniform strutting around with our heads held high and proud; The day where we look to our parents with joy exclaiming that we did it! Oh what a day of celebration... And to think that I'd miss it :(

 

 

The commissioning is the mark of a beginning. A beginning where we begin our careers as beautiful fit young strong enthusiastic competent doctors. But instead I'm bestowed with disfiguring scars from the SJS to start off my career..

The Kübler-Ross model postulates the 5 stages of emotion terminally ill patients go through which includes denial, anger, bargaining, depression and lastly acceptance. I can't say I went through all stages but I definitely was angry initially, WHAT THE HELL DID I DO TO DESERVE THIS?!! OF ALL TIMES, WHY NOW?! WHY ME?! 

But after some time, I arrived at the acceptance phase. The Lord gives and the Lord takes, so I suppose in the grand scheme of things, this makes sense in a way, who am I to get angry. I have decided that I refuse to let these scars define me, whether they remain permanent or not, come what may, I shall continue to strive and live life with a gusto of joy and enthusiasm!

Recovering back in my hometown, as my vision slowly starts to clear and the scars start healing, I have had ample time to think and ponder, And a few things I have learnt throughout this particular interesting journey of mine:

1) I now know what kind of doctor I wanna be. I'm going to be that doctor who brings people out from their tunnel darkness, the one that shows them the light at the end of the tunnel. I have been there and I know the importance of doctors like that, a doctor who has the ability to recuse people with their knowledge. And to do so requires years of training and sacrifices to be a master in whatever field I choose, which I'm prepared to do.  

2) I learnt kindness. The way people went out of their way to help me and thus I have resolved to do the same. My motto in life henceforth would be "Give". I've taken so much and perhaps it is time to give.

3) I've learnt humility. I have never agreed when people say "Inshallah" or "If God is willing" I shall achieve so and so. I believed that if you want something, all you have to do is put in the effort. Why would the permission of some deity count for anything, perhaps only as a excuse when one fails, one may say it wasn't God's plan. But I have realised the errors of my ways, there is higher power at work and it is time I learnt how to submit to Him. No more being foolishly arrogant thinking that I have control and that my life is infinite. 

4) I'm going to learn how to play a violin. Nothing to do with my illness, just something I plan to do. So good luck future roommates or housemate. Be glad it isn't singing I decided to learn.

So see you all when I debut in the Malaysian Philharmonic Orchestra! If God is willing la haha. Till then.

 

Yours truly,

Shimri