This post will probably end up being one of those annoying self-indulgent, self-serving posts that bloggers are sometimes prone to creating. I rarely see people talking about this subject because it’s strikes at the heart of how we see ourselves. I hope it means something to someone struggling in silence, and a reassurance that they are not alone.
I have a form of Rheumatoid Arthritis called Adult Onset Still’s Disease. It’s the sort of disease that is incredibly rare and takes a unique course in almost everyone who has it. My particular variety is very aggressive and unrelenting. I’ve never been able to achieve a full remission. Ever. It’s the sort of disease that isn’t always fatal, but the suicide rate among those who have is nearly triple that of the normal population.
Before I got sick, I didn’t think there was anything that I couldn’t power my way through. I played the game of life in pain, because that couldn’t stop me. I played the game sick, because I didn’t think that would stop me either. I had will power. I arrogantly believed that my personal store of will power was so immense that there just wasn’t anything I couldn’t overcome. The Universe has a way of curing us of these conceits we have about ourselves.
I stood up and walked out of what was a confusing and painful childhood. I put my own damn self through college. Sometimes working three different jobs while taking a full load. It was a struggle. What I didn’t know at the time was my body was already beginning to fail me. I thought it was just personal weakness that had to be conquered. That hard-headedness probably caused me to lose valuable time in fighting the disease that would ultimately rob me of the accomplishments and success that I thought defined me.
Then came the day when will power just didn’t get it done anymore. Will power couldn’t stop my joints from turning to dust. Will power couldn’t stop my immune system from relentlessly turning itself in on me. Will power couldn’t heal my organs as my disease ate away at them. And finally, the coup de gras, will power could no longer help me overcome the intense pain that only became worse because I had refused to heed it and attend to it for so many years. Life caught up with me. Life laughed at my feeble attempts to rise above it and drive on anyway. Life humbled me.
I am now at the stage in my disease process that the little victories are all I have. I will never conquer this disease. I am not the one person on the planet that it won’t steal all that I value from me. There will never be a cure for me. It’s just too late for that.
So I dwell on the small victories. I’m not in a wheelchair yet. A miracle according to my doctors. They attribute it, in no small part, to my being too dense to know when I’m beaten. My heart keeps beating, despite this disease trying to silence it. I’m pretty convinced the only reason I’m still walking this earth is because I was always too stupid to know when to leave a party. And the party of life is no exception.
So bad news comes, as it did today. My lab values remain dangerously high despite all of the major changes I have made to try and mitigate the damage. Will power isn’t enough. It’s like constantly flunking a test that you have studied for endlessly. No matter how many times you take the test, no matter how good you feel about the test, you are still going to flunk the test. All the will power in the world won’t change that simple immutable fact.
So what is left when will power fails us? What is left when that characteristic that we think defines us just doesn’t get the job done anymore? When the success that defined you is stripped away, when the profession that defined you is lost, when the thing you viewed as one of your strongest character traits fails you profoundly…what is left?
I think I’m finally getting a peek at the answer. And I am as shocked as anybody at what the answer is. What is left is ME. The only thing left to define me, is ME.The way I love. The way I laugh. The beauty I find all around me. The friends that delight me and to whom I might give some small measure of joy on occasion. The way I have begun to gobble up life as if the next meal isn’t promised. I’ve spent my whole life hiding in that other stuff, and now I am exposed and raw and standing in the bright sunlight of my life.
So today I am feeling a little overwhelmed with the futility of fighting so hard in a battle I can’t win, and yet it isn’t within me to stop fighting. I don’t think I even know how to not fight that which needs fighting. I’m a little overwhelmed with the frustration that this is all so far outside of my illusion of control. But I can still control how I react to it. I’m a little pissed off because sometimes I just feel cheated, not just for me but Mrs. GrumbleButt too. But the love we share is so epic that I know most people will never really know what it is to be so thoroughly loved by someone, even if only for a moment in time. How can I feel cheated when I have that?
I might not be able to win this fight, but it is gonna be one hell of a war until I lose.
Peace and love, yall.