In the complex land of the chronically ill the word "remission" is thrown around a lot like candy shooting out of a pinata. Everyone wants it and you'll fight even your best friend for a piece. Scrambling around, excited, scared, and hopeful we reach out blindly trying the latest drug, treatment plan or diet. And so we fall to the floor despite our dignity in what becomes another vain attempt to rise up triumphant. All too often, like the kid at the party who was just too small, or too slow, or too weak, we are left holding a only few blades of grass and our disappointment. No candy. No remission.
For those of you still unfamiliar with the terms "remission" or "flare," here's a little Chronically Ill Vocab 101 to put things in perspective:
1. Chronically Ill- you are sick now, have been sick for months and will continue to be sick for the rest of your life.
2. "Sick"- does NOT mean the flu. It can consist of muscle, joint, skin or internal pain. It can consist of swelling, fatigue, brain fog and many many other things.
3. Auto-Immune- Your body is attacking itself. It cannot distinguish between healthy cells and normal cells so basically it's just raping them all and wrecking havoc on whatever it feels like.
4. Flare- When a chronically ill person gets worse. Symptoms are heightened or those that were dormant come back.
5. Remission- a time period in a chronically ill person's life when he/she is symptom free for a prolonged period of time (technically the person will be symptom free AND medication free- that is the TRUE meaning of remission)
6. Cure- ha...that's funny.
I have heard many of my fellow chronically ill blogger and FB friends bring up and talk about remission. For themselves. For me. For others. But the truth is, after MY last flare, I have given up on hoping for remission. I have given up on working towards remission. Remission is a myth.
Now, for those of you ready to throw your computer across the room and yell at me and tell me that I'm a cold, hopeless bitch...please read on to understand why I feel this way.
The myth goes like this:
Disease meets person.
Disease attacks person.
Person fights back with a gun.
Person gets tired.
Disease keeps attacking.
Person fights back with a sword.
Disease slows down.
Person meets Remission and falls in love.
Disease hides in the corner watching the love story.
Person fights back less.
Disease returns with a vengeance and steals Remission.
Person fights with gun and a sword to take back his/her lover.
Disease laughs and runs off with Remission into the sunset.
Person is left with the scars.
Now, I know this sounds bleak...BUT this is what the remission myth does to the psyche of the chronically ill said person.
You see, after my last flare I've had a lot of time to put things into perspective and understand where I went wrong and how I could have let it get so bad. What happened is that I was working so hard to go into remission that I failed to recognize the signs and symptoms of shit hitting the fan. I also failed to enjoy my life because the only thing I cared about was getting better. Making the disease disappear. That, my friends, is no way to live.
Instead of working towards remission (because I've said it before and I'll say it again, this is NOT cancer. There is no cure. "Remission" is as close as we're going to get.) because we all just assume it's better than where we're at, I am going to enjoy where I'm at as much as I can. Who says remission is going to be better? I'd much rather learn how to live the best life I've been given and know that I lived everyday serving my purpose. Why live for an uncertain future when you can have all the happiness you choose to accept in the present?
I didn't stop working towards remission because I failed. I have stopped working towards remission because I already have enough scars. I have accepted that this is my life, and dammit, I'm going to make a good one. I still work hard everyday to live as pain free as I can but the future of my pain is not my number one concern, the rest of my life is.
In the chronically ill world we have replaced the word "cure" with the word "remission" and many of us have suffered for it. We are not going to be survivors because these illnesses are for life. Whether they kill us or not, you don't "survive" Lupus or Rheumatoid Arthritis. You live with it. Until the day you die. We should not hope for an elusive act of magic or divine intervention. Instead we should be certain that we are where we were meant to be and that our lives and our dreams have a purpose. At the end of every day we should only hope that tomorrow we are able to wake up and do it all over again regardless of how many pills/naps/accupunture treatments it takes.