Somewhere in the 28 days between being listed for a heart-lung transplant and receiving one, I decided I would write a book. Something to keep me busy during what I assumed would be a year of loafing around my parents’ house on 3 liters of oxygen. I bought four novels I determined were relevant to my education as an author-to-be: Pat Conroy’s The Great Santini (fighter pilots and autobiographical fiction? Sold.); Girl, Interrupted by Susanna Kaysen; Sylvia Plath’s The Bell Jar; and Anatomy of an Illness by Norman Cousins. I finished the first and lost the other three. I spend a portion of each day furtively searching for these books. My mom laughs at me when she catches me staring at our bookshelf in vain, pouring over the rows of books from my childhood once more. I imagine they were lost in some transition from one hospital room to another, or from a car to a friend’s house.
I had hoped to blog about these books triumphantly upon finding them—perhaps as a device to talk about closure. But I haven’t found them and maybe I never will. Still, every time I come across an unpacked bag, I feel my heart rate increase with the fleeting expectation that it will contain the books, the words and the strength I need to make sense of this new life.
Earlier this month a 25% decrease in my Prednisone dose sent me spiraling back to a bitter and lonely state. My pain and confusion increased. I noticed myself losing track of chunks of time and joked that it was a good thing I had my dog, Basil, to ground me (her tiny legs keep her very low to the ground). I took her on walks around the neighborhood—to keep moving and have less time to say mean things to my mom—knowing she would tug me toward home if I spaced out for too long. I wanted to eat everything in the house. Mostly I craved junk food, but there was not much to be found, so I settled for a banana and then chips and salsa and then a smoothie and then pieces of dark chocolate and then a baked yam.
Thank you to my friends who told me to shut up when I compared myself to a certain gorilla whose life was taken far too soon, and insisted I wear the cute dress that didn’t do the best job of hiding the increasingly pronounced steroid-induced dark fuzz covering my body. This should be the least of my worries, but I’m startled every time I look in the mirror and see a puffy face, growing sideburns, and spots of acne—all side-effects of long-term use of Prednisone, a medication I will be on for the rest of my life. Most of the time it’s fine—I can rock the squirrel look just like I rocked an IV pump and oxygen cannula. I mean, how can I complain about a hairy neck when I’m rubbing sunscreen into it on my way to hike up a mountain? Oh, I find a way.
I’m distressed by how different my reality is from the one I see other people living in. Now that I am home, I feel expected to assimilate quickly. On June 30th time began moving at a non-standard rate for me. In three months, my world has changed. Communicating is hard. I keep trying to find the words to explain all that came with this new heart and lungs: new perspectives, concerns, inside jokes and body hair. I lost parts of my identity in the transition, along with the missing books that continue to haunt me.
Back in Santa Rosa I have been doing a lot of organizing. It started with the heap of boxes and bags we unloaded in our living room. We had to unpack post-transplant apartment life along with bags from University of Washington and Stanford hospitalizations. Adding to my confusion were crates of clothes dating back to high school that were moved to my newly converted first-floor bedroom. And then there were boxes and cabinet drawers filled with obsolete medical supplies. As I unpack the relics of my old life, sorting them into piles to keep, give away or throw out, I hope you will join me in the process. I hope you will recognize all that has changed for me in my chubby cheeks, unpredictable calendar of appointments, and trash cans brimming with my old feckless medications to make room for eighteen new prescriptions. I am not going back to normal. My life is different now, and that’s okay. Thank you for giving me time to search for the words to communicate the changes. And if anyone finds my Clipper Card…still searching for that too.