I smile every time I read your last letter:
“Anytime you need a friend, I will always be there for you. “ But maybe we never thought of a time when the pain inside me would have strangulated my voice. Would you still be able to hear my cries for help? Will you be a friend, even when I can’t say I need one?
I need you. I need you to talk to me, listen to me and discuss everything under the sun and not just my disease. I am already facing it day in and out. Talking about it constantly is depressing at times. Let’s talk about the places you have been travelling to or the latest movies released. I would never want it to be about all that should have been but wasn’t. I would rather want it to be about all that can be, shall be and will be.
Yes there are days when I wake up like a zombie, unable to even hold my tooth-brush. The day floats by, with me struggling to make sense of anything happening around. The numb feeling at the back of the mind is for real; sometimes there are mild tremors too. Yes there are good days and there are bad days, but neither of them is in my control. I can’t sit in the bed every morning and say “Today is going to be a good day.” Because my mind might listen to that, but unfortunately my body doesn’t. I can be severely famished, have all my favourite foods before me and yet not be able to eat beyond few morsels. While some days I look like someone who is starving to death. Life sends new surprises every single day and I have begun to love them.
I know I don’t look sick at all and I never will. Somehow that’s the way it will be, always. You will never know the storms I carry within me or the battles I am fighting. However, that in no way belittles the whole effort I put in not giving up. “Happens to a lot of people” is perhaps one of the worst advises you could give me, closest to “Just chill, enjoy and it will all be fine.” We all have different ways to deal with pain and different bearing capacity just the way we battle different problems in life. The magnitude of the issue sadly cannot be seen by anybody else but the sufferer, in this case, me.
Remember the lunch date I backed out from just a day before? It was my body screaming for attention. Don’t pounce on me when I cancel the plans at the last-minute. Sometimes getting ready in itself swaps me out of my energy so badly I can barely move. I have to lie down on the bed for a while before deciding if I can leave the house. It does feel good, knowing that we will meet, laugh, eat some good food and have fun. I know it will be a welcome change. But traveling for at least an hour to enjoy that fun seems like a battle front to me at times. I know it will all exhaust me very badly that it will take 2-3 days for the fatigue to go away. There are days when I just cannot and the very thought that I will have to scares me. Please understand it my friend, it is not at all intentional.
There are days when I reach the metro station and blank out completely not knowing why am I there and what was I supposed to do. So in case I forget your birthday or anything important that we had decided to do together please be patient.
If I fumble while talking, please understand that my mind is foggy that day…unable to form sentences and process conversations to the fullest, but my heart is listening to all that you are sharing my friend. My disease affects my weight too. So the moment you comment on my weight (gain/ loss) I don’t get offended. It’s just that my mind starts analyzing if that means I am going from bad to worse in terms of recovering.
I know I am not going to die. I know it is not critical. But no this is not in my head. This disease exists and has a name. I am not faking it to gain sympathy or trying to find escape route from situations. Rather if I were to believe my doctor I am facing it very bravely. Did I tell you he has got a new nickname for me “Eveready Battery”, one that refuses to die? I refuse to allow this invisible monster take control of my life. I refuse any pity or sympathy. I refuse to do nothing about it and watching life just pass by me. I refuse to give up. All that I ask from you is a little bit of understanding and respect.
Believe me when I say that sometimes it is painful in a whole lot of ways I cannot explain to anyone. Combing my hair is a task. Painting nails is a long forgone pleasure and so is my love for painting. Those tender strokes and shades are a thing of the past. Right now even to hold a paint brush and paint within the boundary line is a challenge. And yet I do it all. I comb my hair, I paint my nails however messy and I still paint with water colours however undecipherable, because for me they define the small victories of life. They tell me that I can, however miniscule.
I have, I can and I will continue battling this with a smile and tons of pride. Because one thing that I learnt with this disease is, “It’s okay!” It’s okay to say no, it’s okay to not be able to do a few things at times; it’s okay to laze about the whole day as your body demands rest. It’s okay to do nothing as the mind and body refuse to co-operate. It’s okay to forget things. It’s okay to not dress up simply because comfort comes before style. It’s okay to fall & break things once in a while. What is not okay is to be pitied or chided for no reason.
I am on a new journey now; one where learning and unlearning is a daily process. Listening to mind and body, heart and soul is the norm. And nothing else comes before it all. If you can be there I will be glad, if you cannot then also I will be glad for I understand – it is not easy. It is not easy to watch someone you love suffer and be completely helpless. It is not easy to be able to see beyond what is visible to naked eyes. It is not easy to be patient when your patience is being tested to the optimum.
I am not writing this to you because I am angry or upset. I am too busy loving life, albeit more dearly than before to even think of anything like that. I am writing this to you because I remember our pact of sharing all that comes our way. Please don’t misunderstand me I don’t want you to share my pain. Even if I want, you can’t. All I want is for you to cheer me from the stands while I run this marathon race of life.
Lastly, if ever you need a patient listener I promise to be there because patience is something I am mastering every single moment of my life.