There is no going back

And that fact is beginning to look more clearly to me than ever. Today, as I look at my scarred skin in the mirror, and my knee piercing with pain with every step that I take, I acknowledge that things will never be the same. 

When my journey of being ill started 4 years ago, myself and the people around me thought very little about how much our lives could change from one diagnosis. Since then, that simple sentencing of “you have a blood disorder” has led us through an array of physical, emotional, financial, and mental misalignments to what we used to call “our normal”. And while the countless physical events that took place in my body were beyond painful and traumatic, this (being now) is perhaps one of the hardest parts of this journey thus far. I currently find myself trying to re-enter the world with permanent internal and external damage without being able to fully access anything that I’ve gained before I had fallen into sickness. There is no more driving to the supermarket, very little use of the years of education that my parents and I had invested in, and whatever dancing I yearn to do, I do it in my dreams. I’m not saying that I can never do these things again, but whatever freedom I had before to just slip into these simple tasks like you would into a comfortably worn pair of shoes, is now gone. 

Most days, I wake up not knowing who I am, what to do or what to think. And this is possibly the scariest thing that can happen to someone who has had somewhat of a structure all her life. You grow up, you work, you get married, you have friends, you make babies.. This was my simple, easy-to-follow recipe for life. But now, it seems like everything has changed with full force. And I’m not just talking about the material things in life, like career and such. But also from the way I think to the way I talk. And all the way down to which side of the bed I have to sleep on, because I have to pee at least 5 times throughout the night and my eyes are too blind to see in the dark so I always pick whichever side that is closest to the door of the toilet (Yes, this happens every night). Sometimes, I have to slap myself out of the thought of wanting to be sick again. As ironic as that may sound, that life too was supported with structure. I had one simple goal in that journey – survive. And all I had to do was follow the instructions from doctors and try not to get killed in the process. It is a world I now know so well and have gotten (too) comfortable with.

Perhaps it’s just me, but when I think of someone who’s been through war or hardship or a life-threatening illness, I find there is a hint of concealed expectation placed upon them. I hear whispers of: You MUST be stronger than before or you must LOVE this life that you’ve been given. I even have a friend that nudges me time-to-time about how lucky I am to be alive when others have not been so lucky. And I say this with full conviction that I am 1000% thankful to have survived, but I hope you understand that that does not make my life any easier, especially when everything in and around you has gone through drastic, chronic change. I can’t help but feel this indirect pressure of having to make my life worth it, but I don’t know how. And I am constantly having to fight off the guilt of taking up prime real estate that could have otherwise been given to someone else.

If you’re asking, “what now?”, I honestly have no idea. But I am so relieved to know that I am not alone in this. A few weeks ago, my best friend shared a TED Talk by a leukaemia and fellow transplant survivor, Suleika Jaouad. And she too, had gone through the same pains that I’m going through right now. She spoke of her confusion towards post-illness life and even her fantasies of being sick again. And she ended her talk saying that there is no clear divide between being well and unwell, but we can only manage what we have currently ahead of us. I broke into tears finally knowing that I was NOT a crazy, ungrateful and directionless being. There is no way I can go back to the old me that I’m so familiar with, and I have very little idea of what the future holds. But my sickness will have to come along with me until I finally get used to this body and this life that I’ve been given. It is something that has become a part of me that will shape me to be the person I will be in the future. Unfortunately, I’ve noticed that many of my friends have gotten sick of me talking about my health issues but I’m so sorry to say that I don’t get to choose a life without them. My blindness is real. My unsteady immune system is real. And my scars are very, very real. 

It’s taken me awhile to write again for those very reasons but I’d like to keep going with this journal for as long as I can. There were a couple of events that happened last year that tested me deeply. And even in these recent 2 weeks I was shocked with news of a sudden death of someone I knew, and after that I was struck with Graft versus Host disease, which was most unexpected and extremely painful to go through again. So I’d like this place to be a free space to process events/moments/trials and (sometimes stupid) thoughts of all kinds. Perhaps finding meaning and lessons in them or nothing at all. And maybe, just maybe, if I’m blessed enough to have children in the future, I would have something for them to refer to when they feel lost or unsure about life. Or they can say, my mum had all these disabilities but I gotta say, I think she really tried. And to you reading this, I don’t know what you might find in my writings, but I hope that this journal will heal, entertain or brighten your days as much as I hope it will mine. You know how we always wish there was an extra piece at the bottom of a McDonald’s chicken nugget box? Well we can always use a little bit of extra hope, encouragement and connection, especially in our current COVID-19 climate. So I would love to share my perfectly imperfect nuggets with you, in hope that you might find some comfort and joy in them, or just find yourself craving chicken nuggets. Mmm.. nuggets!