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Learning and trying to be kind and living my life as fully as I can stand it.

Wednesday, August 27, 2014

If you wait for me

When I got sick with liver failure I was living in Orange County, commuting to a secretarial job I didn't like much. I started feeling sick in September, moved back up to San Francisco to live with my mom in October and got admitted to the ICU on November 6th. The doctors weren't quite sure what was going on with me so it took a little while for them to decide whether or not to list me for a transplant. Once I was put on the list I waited 8 days. I got transplanted on November 22nd, had another surgery a week later to have an errant ligament clipped because it was constricting the blood flood to my liver and was discharged a few days after that. The whole thing was a total whirlwind, with time moving both fast and slow depending on the day. It felt like falling down the rabbit hole and I think all of us moved around (or in my case laid around) in a state of dumbfounded shock.

I had an anxiety attack a few days before getting discharged. I'd never had one before but I felt it stalking me for hours before it arrived. I was reading a book and I felt like the words were coming faster and faster and if I could just keep reading, just stay ahead of it, I'd be okay. I started writing a thank-you note for a pair of blue and bronze tiger striped silk pajamas that my dad's friend had given to me. I wrote five words and it all came crashing down on me--total panic. The only pictures we have of me from my hospital stay are right in the middle of this attack. A nursing assistant named Rodney who had loved me and adopted me right from the beginning of my hospital stay brought me a big white teddy bear and wanted to take some pictures with us. I think I'm the only one who can look at those pictures and see how wide my eyes are. Wide from panic and from the high-dose steroids all transplant recipients receive in the beginning.

When my doctors and nurses came to round on me the next day I asked to talk to them all. I explained to them what was going on with me. I said that I was a thinker, always had been. In my liver failure my mind really deteriorated as the toxins that were supposed to be filtered by a functioning liver built up. I was still in there, still somewhat knew what was going on. But I didn't really get it. Now, I was coming back to myself and it was freaking me the hell out. Everything that had happened, the fact that I hadn't really slept for a month, the long list of medications I was being told to take every day for the rest of my life, the fact that I'd almost died--it was all hitting me at once and I needed them to know that I was having a hard time. I needed them to know that I was really there now, really present and paying attention.

The first few times I went back to the hospital for my follow-up appointments, I looked at the long hallways from the sidewalk to the front door, from the front door to the elevator, and wondered why they didn't have handrails for the patients who had to walk them. My belly ached with each step, my severed abdominal muscles screamed as I stood up or sat down. I hurt all over. I watched a recently transplanted woman leap out of her chair and stride across the room and despaired at ever feeling that good again. Of course I did feel that good again and it happened more quickly than I expected.

Two months after my transplant I felt good enough to go back to work. The doctors response was "Um. Why don't you wait a bit longer? Take your time."

So I did. I ended up taking the whole year off work--quit my job, moved permanently back up to San Francisco. Collected disability insurance and had a lot of free time, visiting friends at work, driving around the city discovering new routes from one place to another. I was healing, but I don't think I really thought of it that way. I didn't hurt all over anymore so I didn't think of myself as needing to heal. Even as I dealt with the huge emotions that came in the aftermath of the life-saving surgery. Even as I dealt with feeling like a huge bear had lumbered along and casually cuffed me off the path I'd been walking, sending me flying off the road that had been my life into the unknown. Even as I got admitted to the hospital for a week with an infection. I felt so much better than I had before  the transplant that I thought I was back to normal.

A year and a half after my transplant I was walking down the street in downtown San Francisco. I can't remember where I was going or where I was coming from. The light was the glowing, crisp light that filters between buildings bringing their edges into soft relief. The air was warm. I don't know what I was wearing. I stopped dead in my tracks and took myself in as I realized that I was really myself again. It was like recognizing an old friend whom you didn't know you were missing. "Ohhhhhh," I sighed. "I thought I was better before but this, this is really better. I'm better now."

It was amazing.

Last Thursday I took my older twins to a park to meet a new friend for a walk. We got there early so the three of us--my son, my eldest daughter and I--walked the loop around the park for the first time. The air was warm. The light was bright, almost harsh, on the dry hills around us. We passed a pond full of swans and ducks. The kids were quiet, taking it all in. Our friend arrived and we did another loop, the kids getting fussier as they struggled against the confines of the stroller. We did a third lap when another woman from our moms' group arrived and then I sat down on a blanket with my kids as the other women kept walking. We sat in the dirt, in the shade, between the playground and the soccer fields. The playground was lined with tan bark so we stayed outside because I knew my guys would want to stretch and move without being hindered by splinters. They were wearing shoes outside for the first time and they explored the area, soft and hard, rough and smooth, chain link fence between finger tips, standing and crawling and kneeling on the world. Each one of them fell hard one time, bonking their heads and scaring themselves, coming into my arms for snuggles and reassurance. We loaded back into the stroller and rolled back to the minivan, tired and soothed by being outside, together.

They were quiet as we drove home and the songs on the radio soaked into the silence, marking the day. And it happened again. I looked in wonder at myself, realizing "Oh, THIS is how I felt the last time I felt like myself."

Last fall it was the three of us. During the day, I changed all of the diapers, changed all of the clothes, did all of the feeding and soothing and bathing. We went out everyday, sometimes just got into the van and drove so I could breathe in the quiet and enjoy having baby-free hands. We sat under trees and watch the leaves blow in the wind. We napped on the couch together. We danced in the afternoon together. Sometimes we walked the dog, with one baby in each of my arms. It was not idyllic. It was hard and boring at times. I worried about going back to work. I worried that I would never make any friends nearby. I sank into the couch tiredly at the end of the day, feeling guilty for not having made dinner or not having a cleaner house. I was tired. I was in it though. I was myself--a new mom, a new wife, a constant thinker, a sometime worrier.

Coming back to myself, with my son and first daughter in their car seats behind me, was such a gift. To recognize it and to feel grateful for it. To see these last many months of surprise pregnancy, surprise twins, exhaustion, moving to a new house, having a baby-sitter join our daily routine, another premature delivery, another NICU stay, postpartum depression, two more people joining our family--all of that was falling down the rabbit hole again. I've been sitting in dumbfounded shock. Once you hear a secret, you can never unknow it. Once you find out you're pregnant, you can never go back to not knowing. You can make different decisions with the news but you can't unknow that there is another baby. Or in our case two more babies. Everything changed.

In the van I stopped at a light and turned off the radio, turning on a song from my iPhone instead. Tracy Chapman's The Promise filled the car. It's a song from the olden days--pre-babies, pre-adulthood. It's a song of longing for love--I used to hear it as longing for romantic love. It made me think of high school and college.

I heard it again on the radio last July. My daughter Lily had been released from the hospital, my son was still in the NICU. She and I moved into an apartment across the street from the hospital and for the first time I was a mom with a baby living with me all the time. She cried a lot, screamed actually. I was scared to give her a bath because she was so tiny. It was quiet in that apartment--no TV, no other people except when my husband would come spend the night. The song came on and I held my baby girl in my arms, breathing her in and hearing the words anew. I had been waiting and waiting, yearning. And they had finally come for me.




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