Saturday, March 29, 2014

Brave enough to look

It wasn't long after Danica was born when I wanted desperately to grab something of life again. Navigating the real world after the suffering and "incarceration" of my pregnancy was very hard for me. I still felt like those months were a horrible nightmare, and I lost myself somewhere in the swirling pain and grief. Once it was over I did not feel real or capable of living like I had before. Dan dropped me at the Shady Grove metro station, and I took the train to meet my sister-in-law, Amy, who worked in the DC then, for lunch and to see an exhibition of Annie Leibovitz and Ansel Adams at The Corcoran. I had always admired Annie's photography, but this was on such a large scale and shown in a progression telling her life story. The exhibit was photos drawn from the book just published by Random House, "A Photographers Life, 1990-2005." The photos hardest to see were of Annie's partner Susan Sontag during her fight against cancer and the end days. Annie even photographed her body after she was dead. When interviewed by The New York Times Annie spoke about the backlash she received even by family for including these intimate photos or even taking them at all,

“Let me be very, very clear about this,” she said in a long conversation in her studio in Greenwich Village, during which she alternated between speaking openly about intimate corners in her life that the photographs inevitably expose, and seeming to regret having said anything at all. “Every single image that one would have a possible problem with or have concerns about, I had them too. This wasn’t like a flippant thing. I had the very same problems, and I needed to go through it. And I made the decision in the long run that the strength of the book needed those pictures, and that the fact that it came out of a moment of grief gave the work dignity.  You don’t get the opportunity to do this kind of intimate work except with the people you love, the people who will put up with you,”

We don't have a single photo of me during my later months of pregnancy with Danica. It was so ugly. The only place it is real is in my mind and heart and the few people who were brave enough to look.

This morning I am crushed with pain. My head is numb from my ears up. I feel so nauseous from my pain I keep dry heaving. I am shaking and twitching. My arms go numb on and off, and I can't feel my feet which are so purple they look black. Something has been growing back in my abdomen. The stabbing knife, the dull ache, the pressure . . . the evil creeping demon is back. My inflammation is off the charts. It affects me there and everywhere. My joints are falling out of their sockets. I put my hip and a shoulder back in place this morning. Here's where you look away. I am bleeding. Whatever is growing is pushing my bowels out of my body again, and I hold my breath and bite my cheeks to go, and I look, every time to see how dark red it is and how much, and I cry. I come out of the bathroom, and I am wife and mother and daughter and friend, but I am dying inside. I say I believe, and I hope and just a month ago I was in a place where I felt no pain. Here I am under the grayest skies in the cold grip of disease and suffering with a bit of a healthy glow left and all the determination and dreams in the world.

My girls had spring break this week. I began by taking Delaney to a Christian concert with her best friend and her mom last Sunday night. I spent days before in bed, and it was only love that forced me into the shower and on to this experience with her. We worshiped together, and I lifted my arms to Jesus while Mac Powell sang "Blessed Assurance" even though my shoulders popped out and seared with pain. Monday and Tuesday we stayed in our pajamas while I tried to recover. Wednesday we had dentist appointments. Something about pushing myself to drive across town and care for my girls in this way gave me validation I am still fit for this mom thing. We had lunch at Panera, but I couldn't do more. I fell into bed when we got home. Thursday I drove to my dear grandparent's house. We hadn't been there in months. It was a good visit in one of the places that makes me most peaceful and safe with quite honestly the two people in the world who I know I could run to no matter what. They are aging. I didn't see it for a long time and now I think for moment what it might be like with them gone, and I can't breathe. We spent time with my cousins and their children, and I made a pact in my heart to nurture these relationships more. We will need to keep our family. I was hurting so badly, and it started to sleet, and I thought, "How in the world will I make it home?" I made it back to my bed. Yesterday a sweet teacher from Laney's school offered to take her and a friend shopping to the mall. The mall is like Las Vegas for my kids, a glittering mecca of commercialism we drive around frequently but cannot enter because it could literally kill me if I passed Abercrombie or Macys. If we can't buy it at Target or online we don't have it. I promised Danica we could finally visit her friend Brooke because they moved into a new house closer to us and without a mold problem, a house we prayed and prayed for them. Danica and Brooke dressed up their dolls in every outfit imaginable for a fashion show and a talent portion and Melinda and I scored and judged. It was good. I sat on the couch biting my cheeks and moving my position over and over from pain. Danica and Brooke share Chiari and Melinda and I share the same genetic disease Ehlers-Danlos Syndrome. She is doing so much better, and I didn't even want to hint at how badly I felt right then even though she would have understood the most. I have begged and pleaded with God to help her, and He has. There's nothing worse than raining on a parade you begged God for. I dropped Twix off at the groomer on our way there, something Dan does on Saturdays, but I wanted to do for him to encourage him (he hates that word), and we are finally getting new tires on the white car (remember the last pair we bought with God money in early 2010?), and I wanted to drop the car at Firestone so Dan wouldn't have to go out after his long drive home from work in Fairlawn. My friend met us there and took us to pick up Twix and brought us home. I crawled back in bed and cried just a little. I had done spring break. Definitely one for the books, right?

Imagine every evening of this week my dear Dan comes home to find me curled up in bed, sometimes with a tear falling down my cheek. I have nothing left for him. I sometimes do when the girls are in school all day, and I don't drive anywhere or have to get "dressed up" but this week every ounce of me was drained. This man who loves me no matter what sent me an email early in the week, after the concert and after Monday night seeing me stuff all my suffering deep inside and snuggle and play and read with my girls. In classic short and to the point, but there is so much heart behind it, style it said, "Hope you have a good day. You seemed to have been running on adrenaline yesterday…You seemed “happy” or “content” in interacting with the kids. Long week so take it easy BiMS. Weather gets a little better Thursday." His subject line, "HopefulTUES".

This is where my heart breaks. I have been working on a collage of my hopes for the year. I have been journaling a list of 40 things I want to do before I turn 40. I have lost so much, and I don't want to write about it anymore or spend more time grieving it. I want to grab sweet moments and push myself as hard as I can to LIVE. I don't want to spend another minute trying to reconcile my idea of what God could do with me if I was healthy with what I believe to be true of His goodness and sovereignty next to these days of body racking sobs of insane desire to QUIT.

This is why I am ending TeamDanica and taking up space somewhere new. It will come in the next few months because the logistics and work behind it are not complete, but I know whether it is 10 of you or 1000, there are people who are BRAVE ENOUGH TO LOOK no matter what and stay on this journey. Our stories are different, but we are all fighting hard battles. I refuse to hide this little light under a bushel. If even one person finds their way with this light (and maybe the one person will only be me) then taking the ugly beautiful snapshots of this journey of dying to self and living to Christ will be worth it.

Today, be brave. Look straight into someone's hurt and tell them you will sit awhile. It could save them . . . or even you. It's intimate work. BE BRAVE.

(Photo property of Annie Leibovitz, Susan Sontag leaving Seattle by air ambulance with Annie by her side.  2005)

1 comment:

  1. You are the most beautiful and inspiring spirit. Your words and faith give me strength and peace. Your mission is completely perfect and Thank you for sharing your heart and your life with the rest of us. You are a living blessing.