the in-betweens

 

I haven't spilled my guts for a long time. Deep breath. Here goes . . .

I started this painting years ago. It's a self-portrait, back in the day when I had long, rainbow colored dreads, when I was a single mom, did yoga daily & before I got sick. It sat in the back of my closet, unfinished, for years. I took it out one day last summer, put it up on my easel, opened up a bucket of gesso, dipped a giant brush into it, and brought the brush up towards my face, with the intention of painting over it, erasing it. Then I just stood there. Still. Breathing.

I dropped my paint-filled brush into a jar of water, put the lid back on the bucket of gesso, sat down & just breathed what was in front of me. Something inside me said, "It's time to finish this. The world needs this." I don't know if the 'world' really needs it, but I now realize that I really needed it.

Almost always, when I paint, I have no idea what I'm doing. I have a feeling, but I almost never have a 'plan'. I just feel, and I paint. It's therapy. It's how I work my shit out. It's how I express myself. It's how I move feelings through my body.

So here I am. Years later. Everything has changed. Hair chopped off. Married to the most kind & amazing human being I have ever met. Yoga is a stranger, and my health is a rollercoaster.

I was really sick for over a year, before I got diagnosed. Exhausted. Muscle pain. Aching bones. Tender stomach. In the worst moments, in bed, tears flowing, & the only way I could describe, with words, to my beloved, what was going on . . .'it feels like every fucking cell in my body is poisoned & slowly dying.'

After a super frustrating & painful year or so, I got a diagnosis. Hemochromatosis. It's is a genetic blood disorder. It causes me to absorb crazy amounts of iron. Who knew too much of a good thing could be fatal? Iron builds up in your body over time. You don't pee it out, like so many other vitamins. It builds & builds, continually. When your blood is saturated with it, iron starts being stored in your organs; liver, heart, brain, bone marrow . . . which can then cause liver cancer, heart failure, alzheimer's, & a ton more.

So that feeling I had, of "every fucking cell in my body is poisoned & slowly dying", was pretty accurate. My own blood was poisoning me.

The thing we watch & monitor, isn't actually iron, it's Ferritin, a protein in the body that binds to iron. Normal levels are 18-160. My ferritin was 1,918. They also look at your "saturation level" . . . to see how saturated your blood is with ferritin. Mine was 142%. I don't even know how that is possible, but apparently it is. 

I've been in treatment for about 16 months now. Treatment is . . . having 500mL of blood taken from my body every 2 weeks. The only way to get rid of the ferritin, is to get rid of the blood that is full of it. Bloodletting. Treatment will be forever, but will get further apart, once I'm at a good level. 

So there's that. That catches you up to now. 

It would be cool if I could say, HOORAY! I'm done! All better! But, no. They say that if you catch it before your ferritin gets to 1,000, you can 'probably' reverse the organ & tissue damage. Remember, my ferritin started at 1,918.

I have liver pain. I have kidney pain. I smell acetone 24/7, when there is none. I have bone pain. I have muscle fatigue. I have little to no appetite. Walking up the stairs feels like a marathon. My doc ordered CT scans so we can start to see where my organs are at, if they are still full of iron, if there's damage . . . what's causing the pain. My insurance wouldn't approve the scans, so I'm trying to figure that out, and the one thing that eases my pain is an herb that my state deems illegal & docs can't prescribe, BUT! I can get the CBD oil, legally online ;)  HOORAY! A round of applause for Mother Nature!

I may never go back to how I was before. I may never feel the way I felt before. I may never be able to do the things I used to. . . but the one thing I have taken from this whole thing, and it took me a while to get . . . in the moments, (no matter how short, few & far between), in the moments where my pain is less . . . in the moments when I have a burst of energy . . . those moments are fucking GOLD. 

Those moments are magic and filled with light & music & color & LOVE.

I grab those moments by the hand and pull them into the kitchen to make from-scratch sourdough english muffins for my beloveds.

I yank those moments up from the couch, in the no-bra pajamas they've been living in for days, pour them a shot of whiskey, nudge them to pull the guitar off the wall, & sing Rick Springfield at the top of my lungs with them, until I am dripping sweat & out of breath.  . . or I slap a wig on them & play Kenny Loggins & Stevie Nicks with my beloved, complete with a concert for the kids ;)

I grab those moments by the shoulders, look into their eyes, smack them on the back, encouraging lungs to fill up with air, strip all of their clothes off & taking a running leap into an ice cold lake. (true story. This was taken on our honeymoon, where I was sick, in bed, 12 out of 14 days. THIS was one of those golden moments & I screamed "I'M ALIVE!" at the top of my lungs, as I jumped off)

Those are the moments that keep me here. These are the in-betweens. The moments of life, scattered randomly, amongst the pain & the darkness & the not knowing.

This painting IS those moments. This painting is the light in the dark. This painting is the singing between the tears. It is the delicious food between the nausea. It is freedom of nakedness between the days of pajamas. It is the rainbow of color that screams from the blackness. 

It's not about being upset because of how things are or wishing they were different. It's about acceptance. It's about breathing. It's about celebrating the magic moments, wherever you can find them.

This is what I hold on to. The in-betweens. The breaths.

I offer this to you . . . my art . . . which is my heart.

I am making available to you, a limited number of signed prints, canvas prints, and the original painting (SOLD). "The In-Betweens", is HERE. All proceeds from this painting will go towards my health & medical costs. (stuff insurance won't pay for & herbal medicines ;) If you want to help, but don't want or need art, you can do that HERE. Thank you!! 

In sharing this with you, I truly hope that you too, can slow down, breathe deeply, and find the exquisite, mouth-watering beauty of your in-betweens. Soak UP, as slowly as you can, every delicious second of your in-betweens. Let them melt in your mouth. 

So much Love & appreciation for you,

XO, E