After collapsing at work in late 2015, several tests revealed that he had the condition, turning his life upside down.
The condition can paralyze, it can cause people to become isolated. Some victims lose their social life entirely.
Here, Peyton writes a heartbreaking letter to those closest to her.
A letter to my loved ones (what I wish you knew)
Dear family, dear friends,
First of all, please know how much I love you. I am so grateful that you have put up with me and put up with me and all the craziness that has surrounded me since I became poor.
I couldn’t have made it through the grueling stage of diagnosis and all the disbelief of those who didn’t believe I was sick without your support.
Even though I proved them wrong, you have no idea how much I wish they were right: that there was nothing wrong and it was all a fantasy.
I wish I could put into words how genuinely broken I am.
Unless you’ve been in my shoes, you can’t understand how painful it is to see so many opportunities taken from you, so many dreams gone, before you even get a chance to seize them.
It is a pain that is both mental and physical: a pain 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, but that doesn’t make it an easy thing to do.
We adapt to the situation we find ourselves in, because we have to. It’s the only option we have to move on.
I’m not just heartbroken, I’m angry. Who wouldn’t be?
We wonder why us, why me, but there are no answers to those questions.
Think about them for too long and you will go crazy. It doesn’t start out as a bright, fiery type of anger, but it burns.
Enough to not feel it at first. But then she adds a layer. And other. And other. Until everything is mired in hate.
This disease is like a thief, but it is a clever thief. This thief knows better than to break in and steal everything in one fell swoop.
That would be too easy, too noticeable, and over too soon.
Instead, this particular thief is cautious. He hides in the shadows, taking things one at a time, so you don’t even notice at first.
You brush it off with a shrug when you notice the shaking start randomly. You ignore that crunch of pain that’s always in the same place and doesn’t seem to change.
You laugh at the memory loss and hide the fact that you’re having accidents – jokes about keeping your legs crossed when you cough in the future. You keep going.
And because you keep going, you push all the demons that get you, people think you’re fine. You reaffirm this belief by telling them again, yes, indeed, you are fine.
When they voice their concerns, you convincingly tell them it’s just a cold, a touch of the flu, at that time of the month. That’s why you lie. Because in life we are only taught how to keep moving forward.
And when you find yourself believing the lie, then and only then is the thief going to strike.
She’ll gather her entire collection, along with some new things she’s found lying around her body, and leave. He’ll make sure to disconnect some wires and fuse some plugs in his mind before he leaves.
And that’s when reality hits you. Suddenly, you are no longer 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 loneliness, of control…it’s terrifying.
It is ingrained in you to fight this impostor. We don’t like to let strangers take control. But they are much stronger than us.
We try to fight the impostor, medicate him into submission, to convince him not to put himself in his place. We try to think positive, exercise and diet, and change parts of ourselves in hopes of driving the imposter out of our minds… but the joke is on us.
These changes are just his subtle way of gaining an even firmer grip on us. We play into your hands.
So what’s left for us to do, except adjust, accept the rules that this imposter, this thief, has made necessary, and adapt to those conditions.
We change our entire lives, we change all our habits, and we say goodbye to the dreams we have had since childhood. We accept that it was not meant to be.
So all that remains is to ask you, my loved ones, my friends… to accept this too. Accept that what we do is not out of choice, but rather because we had no choice but to make.
Accept that we are not weak, but simply use all our strength.
Accept that we are not lazy, but tired