The Winds of Uncertainty
A journey on pain and suffering.
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I’ve been thinking of sharing this part of my life for a while now. At first, I couldn’t find the purpose nor the confidence in doing so, but now I believe sharing one’s experiences is important and meaningful. I hope it will help those needing some inspiration through hard times.
The start:

On October 2014, I was diagnosed with epilepsy. It was a hard hit. I grew up healthy and could not accept the diagnosis nor what the future would look like. I avoided medications until January, a few more seizures in, where I finally gave in.
I took the prescribed Lamictal pills, and 2 weeks later, I woke up unable to breathe. Looking like a fat tomato, we rushed to the hospital, where I’d spend the most painful memory of my life. I was told it was a simple allergy to medications, and that it would go away on its own. The next few days consisted of watching and feeling my skin burn, as if I was floating over a giant candle. With nothing more than a few Tylenol pills, the next few days consisted of sleepless nights at the hospital, requesting my sister to fill bedsheets after bedsheets with ice. Near the end, I was delirious and thought maybe, just maybe, I had already died and this was what burning in hell was! I was misdiagnosed and sent home, looking like a burnt body, with the promise that it would pass. I was prescribed Keppra instead for the epilepsy. Days passed, my burnt black skin started to stick to my clothing, I couldn’t walk anymore and I silently accepted my fate.

Unable to see me dying by the day, my sister, a nurse, researched an alternate diagnosis. She woke me up and told me I would die if I stayed home. Thinking back, I’m lucky to have loved ones who looked past the discomfort of taking care of me and who didn’t give up on me, even when I almost did. We decided to reach out to another hospital. We walked through the emergency door, slow as a turtle, hiding my face like I was the elephant man as people stared on (afraid of what they saw).

A proper diagnosis:

I was then properly diagnosed with a rare type of allergic reaction; Stevens-Johnson Syndrome (SJS). SJS is a rare disorder of the immune system that attacks and kills the mucous membranes of your body (under the skin, the linings of organs, etc). Untreated, you can have fatal sepsis or organ failure. Unfortunately, due to the wasted time, the SJS covered 90% of my body

My recollection of what happened after is minimal. There were doctors, needles, wires, biopsies performed, and pictures taken. Everyone was in shock that I lived through such pain, I was to be intubated and put to sleep and sent to the best burn unit. It was scary, I considered there was a chance I wouldn’t wake up. I called my mom, to explain to her through sobs that it was going to be okay. I remember pissing over 4 times in the span of an hour before the anesthetic, and then I felt fire seeping up through my arms, followed by complete blackness. I have vague fleeting memories... people in white gowns, glimpses of my family, papers for me to write on. I had nightmares that felt like years.


Finally, I remember waking up, fully conscious, and being told I would live, that the worst had past. From there, every day was an achievement for me. The smallest things felt so huge; taking a walk, having visitors, getting a wire out, my first poop, eating Asian food, watching Shankar’s new I in my hospital bed (Tamil movies are a must no matter where!). At that time, these simple things gave me happiness, because I knew it meant I got to live, but also, that this was progress.

I was told to take it easy, to stop work and to stop school. I sat at home, had visitors come and go and was left to do, well, nothing really. I ate, cleaned myself, talked to people. Two months later I attended a friend’s funeral, and I watched her cremated on my birthday. My birthday was a reassurance I survived yet another year, but I felt numb in my heart and mind. Everything felt wrong and unfair. Why do such things happen to us? Should I rejoice on surviving? Do I suffer for the loss of a friend? Why did I not have control over anything anymore? Why do bad things happen?

I looked at myself in the mirror, a mishmash of colors on my skin. What would I look like in the future? It was easy to hate my body, but I chose not to.  It was depressing at first, but I somehow felt strong. I could have easily died but this body of mine fought so hard to keep me alive. I felt the biggest sense of gratitude. Whether it’s a sickness, giving birth, or simply the process of aging, our bodies work so hard for us and I had a new appreciation for it.
And with that, I decided not to sit back. I got up, and wrote a list of things I wanted to get done in the near present. I went to school, lived through the stares. I worked bit by bit, as every step felt constructive. I wanted to graduate on time, and when I did, I left home to work out of town, alone to think and reflect... It’s still hard, I don’t have an answer to most questions, but I’ve learned a lot.


Dealing with unpredictability:

I’ve learned so much through pain and suffering, through the many occasions I’ve felt depressed about my life. I learned that death could take people away and that anything could happen, anytime. Uncertainty, it was my mind killer, it was the thing that made me suffer the most. A mind killer can manifest in different forms for different people; anxiety, jealousy, depression, anger management, betrayal, regret…But trust me when I say, it’s ok to feel that way. Pain and suffering are a part of life and should not be ignored.
Life is extremely unpredictable. You never know what’s ahead. We think life is a fated path we walk on, that it’s carved out with predetermined forks. Come to think of it, I think there really is no path. Life itself is ever changing. You are ever changing. We are all just sailors, sailing in some cosmic ocean, the wind blowing us whichever direction, and we are in it. Through sunshine and storms, crossing others along the way, unknowing what the shore looks like, if there even is one. But I learned the hard way, that we can adjust our sails to the winds of uncertainty.

I don’t feel like a sage (far from that), though I have learned a thing or two from being alone for some time now, and that is to move away from feeling anger and unworthy and more towards confidence and kindness. These are the two things I’ve realized I needed to grow on.

No matter what happens to you or to others, remember to be kind. People make mistakes, that's part of the learning, so take it kindly. You’ll be able to forgive yourself and others through the hardest times. And confidence, it may not be a magic pill, but I think a lot of us can benefit from it. Think about your negative thoughts. Perhaps it’s feeling inferior, angry, anxious, fearful, insecure, sad... If we worked on our confidence, I think it really would help us heal from such negative emotions. Confidence comes in many forms, not limited to how you look, but confidence in the choices you make, the way you think, the things you like, the values you choose to live by…and so on. Also, surround yourself with people who don’t make you question your confidence. Don’t worry too much about how you are perceived by others. If it makes you happy, go for it!

For those who have went through or who are going through a hard time, don’t give up! Remember, there is growth in pain, and suffering can lead to positive outcomes. Accept it, trust me, it’ll hurt less. Find ways to manage it. Inspired by my stay at the hospital, I’ve learned to manage pain by continuously finding something productive to do, no matter how small it was. It could be to donating your old clothes, updating a CV, learning to make rice, planning an itinerary, running an errand, finding time for a loved one… whatever it is, keep working. It's productive, and it boosts your confidence.

I’m still learning, there are so many things I still don’t feel confident about being or doing. And that’s life, every day is a work in progress and its unpredictability, our choices, our experiences, and what we share with others, makes it all worth it. And now, I’ll ask you, what storms are you sailing through?

Renuka Sivarajah
90's kid, teacher. artist hands, dancer feet.
90's kid, teacher. artist hands, dancer feet.
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