When I started this website, I promised myself it would be real. About real things and real life. I love writing poetry and I love talking about things that are controversial. The below is a day in my life. I know there are many of us out there and although I am not ready to share all the details, I am sure that this post will hit a nerve with so many. I want you to know that you are seen, you are heard and you are not alone. In honour of World Health Day, I am sharing this with you.
Keep fighting spoonies, chronic warriors! But remember its also okay not to always be strong, smile and put on a brave face. I see you!
This disease SUCKS!
It steals from you.
Robs you of everything you have,
like an unexpected thief in the night.
It lingers and leaves you depleted.
Having to start again and again.
Having to find strength from deep within to keep going.
Strength and perseverance you didn’t even know you had.
It robs you of time, peace, health, family, friends, work, joy and consistency.
Always on a alert, always cautious.
Throwing caution to the wind is like playing Russian Roulette with your own life.
There is no keeping your eye on the prize as the rules always keeps shifting.
The game keeps changing.
There is no win here. No end in sight.
No rest for the wicked as they say.
A small pause perhaps, like calm before the storm.
You’re in the eye of the tornado and you don’t even though it.
Always bracing for the next shoe to drop.
So you persevere, you keep going,
Keep trying, keep working, keep smiling, keep adapting!
It’s when you rest when you feel it the most.
The pain, the sorrow, the loss.
It’s in the calm when you realise how much you have lost.
How much it hurts.
It’s in the calm you realise how alone you are.
But yet you stay blessed. You look forward. You breathe.
You find the strength to push on.
You get up. You see the beauty around you and smell the roses.
Because you are alive. It can always be worse.
You look for miracles. You become the miracle in someone else’s life.
You find a way to make beauty and kindness in a world so cruel.
You give. You give because you know how much you need and so you give.
Perhaps you give because you know what you lack
and you don’t wish that on anyone.
Perhaps you give not to receive, but hoping that if you do, perhaps,
just perhaps you will receive too.
But you know that’s wrong, its selfish.
Who gives hoping to receive. But I am human.
You know self-talk like that is wrong, so you reprimand and you rise.
You rise above and you move on.
You go on, because you, yes YOU! are making a difference.
Perhaps for your self and others. Who knows?
But you rise, you fight, you cry, you loose, and you rise again and again and again.
This disease takes. But perhaps it also gives.
It gives perspective, empathy.
It knocks you down and make you see things, feel things.
It doesn’t make me stronger, it weakens me.
But it has showed me that I have always had strength.
It shows me patience, endurance, kindness, compassion, perseverance,
As much as it shows my weaknesses.
But I rise. Ever day I rise.
I fail, I learn, I try harder.
But I am here.
Foolish, lonely, scared, unsure,
Terrified, in pain, laughing, loving, giving, persevering.
But I am here.
This disease SUCKS! And it’s forever!
It’s exhausting and its real.
But I am here. Being!
Somehow not surviving, not thriving, not living either,
But I’m here!
-EV
