Published on Wednesday, 27 June 2012 02:24
Written by Jules
I am not into lofty platitudes. I am not one for bumper stickers and and bookmarks that remind me of how I should be living or what is coming and going around me that I am supposed to remember. How I have become the Godmother of "Chronically Awesome" is truly a happy accident. It was about timing, misfortune, illness, and loss. It was even a lot about fighting. Still, it happened, and I am glad that it did. I don't even find the idea lofty, or even all that spiritual. It just IS.
Chronically Awesome is about finding, in that moment of weakness, all of the reasons to move on, to keep fighting. For those of us who are chronically ill, we need to be reminded that there are more reasons to live, and fewer reasons to be forelorn than we think there are. In the moment, when pain strkes, when it is all encompassing and all consuming, that feeling of power when we type #chronicallyawesome at the end of our tweets, we remember that we have power over pain, we have so many more reasons to move on, to move up, to move out and past the pain and on to the so much greater work of living.
That is what we are doing, each day. No one, no thing, no pain, or illness can take away that we are living.
And why wouldn't we want to celebrate that?
But, and oh but, and oy vey someone always has to put their big ugly butt in our way.... why do we always seem to see the dark ugly cloud over the chance at living?
For someone who always seems to think, or be relied on to have the answers, this is something I DON'T KNOW.
I don't know why, when there is so much out there that even the sickest of us can do, we still want to see only the shit, only the bad, only the big ugly but
that tells us that there is an exception to the rule of living.
Well, I refuse.
I refuse to give in to Chronic Illness.
I want to be Chronically Awesome.
And I don't care who knows it.
I won't keep this shiny, sparkly, gem of a life that is mine a secret.
The tricky part is this: To show how cool it is that I am living, you have to know what a fucking miracle it is some days that I am. That is something that comes with accepting me. To accept how awesome I am is to accept how not awesome some parts of me are.
And believe me, there are parts of me that are not so awesome.
Deal with it.
That brings me to the second "lofty platitude".
Today is really the first day of the rest of my life.
Every day is.
I wake up each day twice. The first time I wake up is to swallow a ton of pills. I do it with gratitude. I do it knowing that those pills are both keeping me alive, and relieving symptoms that would keep me less awesome.
Then I go back to sleep. I let them do their work for at least an hour before I can eat.
When I wake up again, I eat. I eat food I love. I don't waste this first day of the rest of my life eating nonsense food. I eat like it's the beginning of wonder. I eat like it's the first time I have ever used my taste buds.
I eat like food is awesome.
Which is something to behold when you consider that a majority of my stomach has been removed.
I do each thing that I do with a bit of unique panache. I don't treat the gift of my life like it's something less than ordinary.
That would be a slap in the face of all of the effort that not only I have made, but all of the people that have made effort toward keeping me alive, keeping me comfortable, keeping me happy.
And there are people in my life that do that.
I love those people.
And if you are in my life and are not interested in being on the train of Chronically Awesome, get off my track, you are wasting the time of all the good people that are.
Today is the first day of the rest of my chronically awesome life. I am going to live every second of it. Want to watch? Want to live it with me? Come on! Let's do this thing. I may not always do things the way you want me to. I may even do things that really annoy you, but guess what? You will see when it's all over, when we are counting up all the really cool things, all the things that make us happy. I bet you will see in the long run that I did it right, I did it the way that made the most not just of every day, but of every moment. Every shiny, beautiful, amazing moment.
I want to take you along for the ride. I hope you join me.