Dear Loved Ones, What You Need to Know About the Thief Inside My Body

Below is an open letter, to my loved ones all around. It’s often difficult to express myself, and so while my usual posts are usually about my experiences and the pieces of advice found, or the hilarity I’ve witnessed along the way, this post is different. This is a letter to everyone, to tell you what I wish you knew about my condition, and the things I wish you understood.

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Dear family, dear friends.

First of all, please know how much I love you. I am so grateful that you’ve stuck around and put up with me and all that has surrounded me since I got poorly. I couldn’t have got through the grueling diagnosis stage, and through all the disbelief from the ones that didn’t think I was sick without your support. While I proved them wrong, you’ve no idea how much I wish they were right – that there was nothing wrong, and it was all make believe.

I wish that I could put into words how genuinely heart broken I am. Unless you’ve been in my shoes, you cannot understand how painful it is to see so many opportunities snatched away from you, so many dreams gone, before you even had the chance to grasp at them. It’s a pain that is both mental and physical – an ache in my head and in my heart. Life throws these things at us for a reason, and we have to find a way to survive it, but that doesn’t make it an easy thing to do. We adapt to the situation we’re in, because we have to. It’s the only choice we have, to keep going.

Not only am I heart broken, I am angry. Who wouldn’t be? We ask ourselves why us, why me, but there are no answers to those questions. Think about them for too long and you’ll get overwhelmed. It doesn’t start out as a bright fiery kind of anger, but instead it smolders. Enough that you don’t feel it at first. But then it adds a layer. And another. And another. Until everything is mired in hatred.

This illness is like a thief, but it’s a clever thief. This thief knows better than to come in and steal everything in one fell swoop. That would be too easy, too noticeable, and it would be over too soon. Instead, this particular thief is cautious. He hides in the shadows, taking things one at a time, so that at first you don’t even notice. You brush it off with a shrug when you notice the shaking starting up randomly. You ignore that creak of pain that’s always in the same place and doesn’t seem to shift. You laugh off the memory loss, and you cover up the fact that you’re having accidents – jokes about keeping your legs crossed when you cough in future. You keep going.

And because you keep going, you push through all the demons pulling at you, people think you’re fine. You reaffirm this belief by telling them again, yes indeed, you are fine. When they express their concerns you tell them convincingly that it’s just a cold, a touch of flu, that time of the month. You lie for it. Because in life we are taught only how to keep moving forward. And when you find yourself believing the lie, then and only then is when the thief will strike. He will gather up all of his collection, along with a few new things he’s found lying around your body, and he will leave. He will be sure to disconnect a few wires, and short fuse a few sockets in your mind before he goes. And that is when reality hits you. All at once, you are not the person you used to be, and who you are now is a stranger to you.

Coming face to face with an impostor in your brain, after 23 years of solitude, of control…is terrifying. It is ingrained in you to fight this impostor. We don’t like to let strangers take control. But they’re much stronger than we are. We try to fight the impostor, to medicate them into submission, to talk them out of their position. We try to think positive, we exercise, and diet, and change parts of ourselves in the hopes of driving the impostor out of our minds… but the joke is on us. These changes are just his subtle way of getting an even firmer hold on us. We played into his hands.

So, what is left for us to do, except adjust, accept the rules this impostor, this thief, has made necessary, and adapt to those conditions. We change our entire lives, we change all our habits, and we kiss goodbye to dreams we’ve had since childhood. We accept that it wasn’t meant to be. So, all that is left, is to ask of you, my loved ones, my friends…to accept this too. Accept that what we do is not out of choice, but more because we had no choices left to make. Accept that we are not weak, but simply used up all of our strength. Accept that we are not lazy, but tired. And accept that we do not like these changes anymore than you do.

But as history shows, we are built to adapt. So we did.

All my love.

P

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