When I don’t know what to do, I usually make a huge mess. I also tend to revert to the only things I know.
It’s a throwback to how I was raised and all the superstitions that came with a Catholic upbringing.
So I’m sitting here, tears streaming down my face, with a mess in front of me that I have no clue what to do with. There’s a worry stone, given to me by a friend of my husband’s… she had picked it up in Tibet and it was to help me get through my first pregnancy which was very difficult.
It wasn’t supposed to be difficult. I was supposed to be one of those women who worked until she gave birth and glowed and life went on as normal while I incubated our son.
I was supposed to be a lot of things.
Of course back then we had no idea I had Lupus, and we had no idea that premature labor would land me on bed rest for months, causing horrible strain on my husband and the rest of my family. I could do nothing to make the situation better except lay down and hope our child was healthy. During that time, that smooth worry stone was a like a hug of peace around me.
Yes, I know that sounds corny. But when you have no control, you’ll take a worry stone from Tibet and rub it with your thumbs even if everyone laughs.
Life went on, and our son was followed by our daughter and then my health began to deteriorate. Always with me as the cause of everyone’s strain. And always with me having zero control over the illness that was causing it all.
I remember lighting candles at the Catholic church in Santa Monica close to my husband’s work at the time. Why? Because I didn’t know what else to do. I had no control and everything practical we could try had been done.
I remember standing in my back yard in the dead of night, hopped up on 80mg of prednisone (steroid) and incapable of sleeping. I sat on the cold brick edge in our yard and talked to the full moon. Legends tell me the moon is a woman and if she can pull those beautiful ocean waves into the sandy shore…surely she could cure me of this terrible pain in my body and the terrible pain it has caused those around me.
More recently I took the kids with me to light a candle and the church was closed. While my husband and I laughed this off, inside it was like a punch in the gut. I NEEDED to light a candle, and the CHURCH WAS CLOSED.
Again I find myself having one of those days where I am in need of something and am at a loss. Do I light a candle? Rub the stone? Talk to the rain steadily tapping my patio?
No. None of those were right. So I dug into my bag of magic I keep close to me always.
My favorite Aunt died not too long ago, so the pain is still very sharp. This morning after I dropped the kids off at school I rummaged through my purse…The stone from Tibet is in there. The necklace from my wedding must always be close, along with the first jewelry the kids bought me from those school ‘shops’ during the holidays. You know the ones where they turn to rust before you haven worn them a week but you must keep them forever.
After deciding I needed my Aunt’s special, Pope blessed rosary, I pulled it out of its case and began hysterically sobbing.
It was broken. Just like the church doors were closed. Just like each pregnancy was supposed to be perfect. Just like my life was supposed to be ME helping OTHERS not the other way around, my very special rosary was broken. It’s circle was incomplete.
My dead Aunt’s rosary was laying across my chubby hand, in two pieces instead of one. The irony was nearly too much for me to handle.
Not being one to just accept the broken rosary, I sprang into action. Admittedly rather unthought out, rushed action. Typical of me.
One of the links was unlinked so I scrambled and rummaged through my husband’s tools to find something to smush it back together and make it whole again. It had to be whole again. Everything had to be whole again. Now. RIGHT NOW.
My therapist laughs and shakes her head at my patience issues. This is a perfect example.
Standing in the garage, looking at a box of tools I never use and barely understand, I realized I was dealing with a very delicate piece of wire where the rosary had broken. If I pushed it too tight with the pliers, it would snap. If I didn’t push hard enough, the circle would remain broken. The rosary incomplete or destroyed. These were my options.
But it’s really hard to try and hold my swollen hands steady and see through tears and fear and pain. But I grabbed the best tool I could find and fumbled and dropped it to the ground almost as quickly as I picked it up.
I did the best I could to gently push together the link so it would stay. And as I was pushing I realized there was a third option and the one I always need to look for when feeling as though I must act or I must fix or I must somehow make up for the illness that is not my fault yet has fucked up everyone’s lives.
So instead of forcing the rosary to be perfect and whole, I very simply put it where it needed to be and gently pushed the wires. But not before letting out my anger that it was broke, yelling at it being my stupid luck it would be broke in the first place, and forcing and pushing and being totally angry with it in my overszealous and impatient way, making it 40 times worse than when I started.
So I stopped. I just STOPPED. The circle is now whole, but it’s not right. And that’s ok. And I’m telling myself that it is ok it’s not perfect. Nothing is going to be perfect with Lupus in the picture, but it can, at least, still be.
I’m setting down the rosary. Putting it back in the bag next to the stone from Tibet. I’m doing my best not to put too much faith in my new voodoo doll that is supposed to ward off bad luck and evil spirits.
Instead I am cherishing the wedding necklace. The special jewelry from my kids. The watch my husband gave me. The locket also given with so much love. And the key worn around my neck, with a similar one worn around my daughter’s neck…carried by my son on his backpack, and carried by my husband.
While I may be getting better, Lupus leaves a strain on families that can not be described. The strain and pain can not be fixed by candles, rosaries, or worry stones- no matter how hard I wish them to, or try and force them with shaking hands in a cold garage on a rainy day.
Patience. Love. More patience, and hard work are the only way to go. It hurts like hell…like no hell I have ever known. And it’s a hell worse than any surgery or any treatment or any hospital stay that this evil disorder has put me through. But I refuse to let it win.
But I need to remember I am winning the battle it has waged against my body. It has been slow and it has taken what feels like forever but I AM WINNING. So you damn well better believe I will also win the battle it is waging against my life and the lives of those around me.
I’m slowly learning how to win that battle, and my weapons will not be rosaries or candles…but humility, understanding, trust, and patience. And learning how to shift the focus from myself and the illness to everyone else and their needs.
When your life is nothing but doctors and ivs and lab work, that is harder than you might think.
But I will find the faith in myself to do this, just like I have found the faith in myself to fight and keep fighting. Because no matter how hard it gets, I know I am never fighting this alone.
Lupus made one hell of a mess and it’s time to start cleaning it up…cleaning it ALL up.