Please God, Let Me Die

By Pandora Poikilos

Apparently, it seems that it would be easier to talk about such a procedure, before the surgery than after. As with most things in life, given any situation, we quickly draw a mental picture of what it is supposed to be like alongside its outcomes and reactions. When something falls short or turns out differently, we forget about questioning our expectations and instead run head-on to blame the factors, we think, contributed to the outcome. And so, I did the same. I convinced myself that the surgery would be a small procedure (as mentioned by my neurosurgeon, who of course does far more complicated procedures and probably needs a calm patient instead of one who would freak out to the moment of general anesthesia) and neglected (but thankfully, learning) some very crucial bits on the road to feeling better.

It's normal
After seven years, not days, not weeks, not months, seven years of having regular lumbar punctures barge into my life and make a mess of it, I got it in my head that the surgery would be my permanent fix-it. Like it would become a better brand of band aid than I was used to. A short span of healing would see to it that my life is all back to 'normal'. I could see well enough to drive without having to worry about some major blindspots. I would be able to see a full colour chart and not mistake colours. I was wrong. See, having a device in your head and a tube running from your brain to stomach (otherwise known as a VP shunt), is really anything but normal. The first difference that I did feel was that my headaches were gone and my eyes felt so much less heavy and I thought, "Wow, it's great." But then the first time I looked in the mirror, I saw a bald headed patient, with surgical dressings on her head, right side chest and right side abdomen, so yes, it's not normal that you would need to have all that done just to have a chance at being less hazardous when driving. And as often as I may sometimes feel down or make a bitter remark at wondering why I would have to go through this, there are even more times when I think, what's the use of being normal anyways, you lose out on every single chance of being extraordinary and being in the company of even more extraordinary people.

Pain like never before
Now, as detailed as everyone (neurosurgeon, assisting doctors, anesthesiologists) will be about how you're going to feel immediately after the surgery and how you're supposed to feel, nothing prepares you for the pain you do feel those moments when you're regaining consciousness, wondering if it's all over. I remember asking the nurse if it was finished, asking her if it wasn't finished if we could stop for awhile, telling her that there was so much pain and pressing her hand so tightly, that she automatically guided my fingers to the little knob that had been placed between my fingers to press for the little drops of morphine that would function to ease my pain. But even as you wait for the morphine to drip through from IV to blood or in the moments when the pain comes back again, this is pain so bad that you don't want to imagine another five minutes of it. As your fingers and toes curl up, the only thought running through your head is, "Please, God, let me die." Yes, the anesthetic and the beginning stages of morphine might make the rest of the world incoherent but until you have those precious drops of medical miracle in your system, nothing keeps you from the pain. Nothing. After more than three weeks of recovery, I'm thankful that I've not had to cross paths with such pain like that again. Yes, there is pain on a day to basis as the surgical wounds heal. There are moments when I am torn between the discomfort of lying down to the pain of keeping my neck upright when I sit but because something far worse has landed on me, I know these moments of 'discomfort' will pass.

Yes, it's really better not to know
I can't remember how long after the surgery before I regained complete consciousness but I remember as I was waiting for the nurses to sponge me the next morning, I felt very small tiny trails of dried blood at the sides of my face from forehead to ear, I felt little scratch marks on both side my forehead, literally in the middle of my temples. When I got home and got to have a proper bath, standing in front of a full length mirror, I saw more scratches on the inner part of my left arm with a little needle mark. I remember thinking, "Wait. All these are new. And I don't remember these bits." Then again, as I watched the Manchurian Candidate (Denzel Washington), really bad choice by the way if you're recovering from brain surgery, they show this bit where your head is clamped down with a metal piece when having brain procedures done, obviously to keep you still but it also has this jarring Frankenstein image drilled into your head, and I thought, "You know what, never mind." The scratches and the marks would heal even before my first surgical check up, the surgery was an overall success and I didn't want to smear that image by thinking of what was done and even more so, how it was done, it's just not going to help me recover in any way.

This is me
As delightful as it is to have well wishers when going through a difficult patch, I think its far worse when people around you don't understand what you're going through. Not only do they misinform themselves on what you need or what you've just been through, they take immense pleasure in spreading the wrong information. So, from having a VP shunt I can probably end up as having had a brain tumour or dying from one as incorrect as it may all seem. I had a VP shunt. Period. Only the ones who really care will make it a point to find out what this means and what it entails. Which is why as nice and as sweet as some people have offered to be, I have not been keen on all visitors. Not to mention, that even with a scarf and proper clothes, I still feel that I look like something the cat has dragged in. Yes, people may think this is rude, insensitive and even a little nutty. But how would they know? Nobody knows the pain or discomfort I can and may feel. Nobody can tell me how to feel at any given time. The only one who literally has insider information, is me. Also, not everyone is mind readers. At some point, I know I have to voice out and say, "This is how I feel, I need to rest." We are each different. For instance, there was another lady who had her shunt surgery on the same day as myself. As I got up and started talking, with no blue black marks on the surgical areas, started feeding myself and got discharged, her shunt got blocked. Within a short period of time, her skull bones suffered an infection and the right side of her forehead sunk in. Same shunt type. Same day. Same surgeon even. We really are different in our own way. And in a moment of weakness, when I think I would rather be anyone else than me, I have learnt to seek solace in knowing, this is me. I may not be what someone else wants me to be but I can be what I want to be.

What's the rush?
I remember hearing somewhere that getting sick is the body's way of telling your mind to slow down. You cannot believe how accurate this is, especially when it's your brains that have had a little 'awakening.' I was so confident in thinking that I would be able to resume my normal tasks within two weeks. Nothing like brain surgery to wake up your senses, isn't it? I found the computer screen way too bright, almost as though I needed sunglasses just to sit in front of it. An hour of sitting up, got me feeling tired enough to lie down at least for a little while. I even had problems with spelling! When having a conversation, I would need to literally give myself a minute before composing a sentence. Very thankfully, I am blessed to be surrounded by people who didn't laugh or raise an eyebrow when they realised these little differences. Even when I brought it up with Peas, knowing I had yawned through many a conversation with him and him not saying anything, all he said was no one expects you to bounce back after something so big. I remember having asked my neurosurgeon before the surgery, when I would be able to do my normal tasks, his answer was very simple and to the point, "If you're up to it, you're up to it." And really, that is the absolute truth. Unless it is immensely vital to rush around and get things done, (which if you're doing, then I think, you may want to reconsider) there is really no harm in taking things slow and doing what you have to, one thing at a time. After all, is rushing going to make it any more perfect or provide our bodies with any extra energy that we may need?

The most important thing of all in knowing that no matter how difficult a situation is and in knowing that we learn from it, is also in believing that it will pass. As much as you're having a "Please God, let me die moment" or when everything has just caved in and you feel weighed down by all that rubble, when someone says it will pass, don't take it as an insult or think the person is being rude. But consider who its coming from and most times, it'll be from someone who has seen a little or even a lot more than you have, so when they say, it will pass, it's their short but gentle way of saying - It really does get better, even if it takes longer that you expect.