Can You Carry Me?

By Pandora Poikilos

It has been exactly 99 days since I've had my surgery. For all the moments when I tell myself "seize the day and life is normal", I am given a few more small reminders that say, "Easy now, it's not so normal and not so much seizing." Peas and I have accustomed to calling my not-so-crowning glory, Stubbly and are now used to the days when Stubbly rules all. For instance, some days when getting out of bed is the biggest chore or when I feel so rotten that I need to keep telling myself all this is just a passing cloud that I'll be laughing at 10 years from now.

If you're up to it, you're up to it
This is probably the best advice ever given, by my neurosurgeon. (Well, for someone operating on my brain, it is good to know he has a wise line or two to impart.) Before the surgery, I had a long list of "when can I do this" and "when will it be okay to do that", which ranged from getting back to my computer, reading, exercising, laundry and so on. With continual stress being put on "not carrying heavy things and being careful of not stretching my right arm" as that's where the shunt tube runs down, he said for everything else, if you're up to it, you're up to it. You're the only one who knows. That is so true. I think on some days people who know me must think I'm utterly mad or just plain lazy to be lying down as much I do but try having a head wound that's healing, gives you a vibrating feeling when cold and has you in so much pain you can't bear to stand. So yes, now my rule is very simple. I start out my day with a set of things I want and need to do. But I also tell myself, if Stubbly gets in the way and I can't finish this list, the world won't end because of me.

The world really won't end because of me
A very close friend told me once, "Don't give yourself so much credit. You're not that famous and you're not that well known". Of course this was when a horribly bad untrue rumour was being spread about me and he came to the rescue of my very bruised heart and ego. But it's true. Abraham Lincoln died and the world moved on. Gandhi died and the world moved on. Princess Diana died and the world moved on. We all do some really great things and still we all make some really grave mistakes. We are not perfect. I am no exception to this rule. Yes, maybe (and hopefully), I'll one day become a well-known writer or even finally have my book published but I can only do what I can, the best I can before I too must move on and yes, the world will move on. Life's like that.

You just need to accept it
Like everyone else, I had materialistic dreams too. A well-known, well-traversed journalist or a high flying entrepreneur who would have her own kids, live a comfortable lifestyle and have enough for luxuries to look the part. Instead, I'm very bald, I have a very carefully planned expenditure plan that the slightest overspending might trigger a tsunami effect and I have a tube running from my brain to my stomach. But I have the ability to make my thoughts known by my writing, I have the opportunity to source out more writing jobs and more importantly, I have love. People who understand me, people who don't push me in the ways they want to go. People who accept and rarely expect. Do I have everything I want? Not at all. Do I have everything I need? Absolutely. I know things won't be easy. There'll be more days when I'm not sure what's happening with my body. Having my own child will also mean more monitoring by my neuro than my gynecologist. But if I do not accept these unique differences in my life and make the best out of them, what else is there to do?

People will say what they want to say
I read this line somewhere, "Funny thing about people, they'll believe that God is dead and Elvis is alive". Yes, somehow and I'm no professional but some people get their wires crossed badly. They'll believe something so silly for the sake of satisfying their comfort zone than to open their mind just a wee bit more and question what has just been said. When I was first diagnosed with PTC and the word got out (as it always conveniently will) people used to ask me "when are you going to die". Even when blog readers ask, my answer stays the same, "we are all going to die". It's like writing a sentence - the language, alphabets, length and meaning might be different but it'll have to end in a full stop at some point. People will have a million ways of looking at things, when they haven't gone through it. You can't please everyone. Really. Love the ones who love you, move on with everyone else.

Appreciate the pain you have
Now, on some days Stubbly gets so bad that I almost feel like I'm in a scene from Gulliver's Travels where my head is tied down with very thick rope and they are little people running all round my head banging and constructing away. The pain I felt as I came out of surgery and the pain I feel on the bad days I currently have, I do not expect everyone to understand nor do I expect people to run around my whims and fancies, although some quiet would be a great help. However, when someone says, "I have a bad headache" I may not snicker but then again, I may not be the best one to seek sympathy from either. It gets me very hot and bothered when I see some people who have controllable medical conditions like certain types of diabetes carry on like nothing is wrong because give me one day, just one, when there is a way to control CSF (brain) fluid or to know what triggers its increase, I'll try it all, with a smile on my face no matter how painful it is. Yes, I may seem very selfish when I cannot relate to pain that is much less than what I am going through but I also know that it is best to appreciate the pain that you do have because it might just be worse.

Don't take life for granted
I might be exaggerating but this phrase has easily been said a million times over. In different situations, in different languages, by different people from different generations and yet, we each only realise the value of this lesson when we are ourselves are faced with a shattering loss that life crudely offers us. I could go on but let me just allow you one last scenario about how precious life is. Imagine a bright eyed five year old playing with you and he circles your neck with grubby cheesecake coated fingers, rubs your nose with his and says, "Can you carry me?" Your heart breaks, more than once when you think of how you'll have to say no to him. That he's just a little too heavy for the tube in your body to bear, that you've just had a VP Shunt, that this is a major surgery, yes, there'll be some intense explaining that needs to be done. He'll either not understand what you tell him or he'll forget in less than five minutes and run off on his next conquest and come running back to you with another hug and even more love. He's a child with so much to give and a very short memory but how will it make you feel?