By Dana Bennett
I was reading Anne Lamott’s newest book, Almost Everything, when I read this in the chapter called “Inside Job”:
“There is almost nothing outside you that will help in any kind of lasting way, unless you are waiting for a donor organ.”
When I read that, I’d already received my donor organ, and it had been helping shape me in many lasting ways. I found it very creative of Lamott to reach around that corner.
I was changed long before the life-changing donor organ, a liver, arrive 2–1/2 years ago. In so many ways I lost count; and in a lot of ways I don’t want to remember. I waited on one transplant waitlist for eight years, then on another list for 45 days. Six short weeks. I was sick a total of 11 years, to the month, May 2005 to May 2016. I went through many changes during that time, most of them subtle, and some very big, cumbersome.
But coming out on the other side of not just the surgery itself but the unsettling storm that hit afterward, then emerging finally into a new, wholly transformed life-shape is disorienting. At the least. It is now incredibly peaceful, full of gratitude and love, with an energy I can’t yet describe. I am writing it as I go to paint a picture for you, my reader. But also for me.
I had been trying to write about my past experiences while I was sick, did a lot of that writing all of 2017 and in 2018, too. Ostensibly, I wanted to help others moving through similar episodes they had faced, were still facing. But part of the storm post-transplant included anxiety and the deepest, longest depression I’d ever experienced. Writing those stories didn’t expunge the incidents or relieve me. I got even more depressed by diving into that pond of memories. It was murky, mostly black, and yes, there were monsters there I had repressed. On purpose.
I had had to keep moving towards my one relentless goal: A liver transplant before I died from the disease. So the stories got more and more difficult to write.
Once I got on this side, the one I’m feeling now, and beyond much of the depression, I had more empathy and compassion for others. (I had gotten pretty damn tight-fisted with those virtues.) I saw others with chronic illnesses (do you have any idea how many chronic illnesses, how many sufferers there are?) that never had a chance to have a goal and an ending like I did: An End to their illness and suffering via organ transplant.
Some had chronic illnesses that were also terminal (like mine). Others would suffer endlessly, always hoping some new therapy, treatment, device would come along to make their lives even a little bit better. Fact is, I learned a lot about management of my symptoms and the new life as a sick person from the chronically ill and their blogs, books, recipes, low energy, anxiety, strategies (The Spoon Theory, thank you, Christine Miserandino). But until I woke up with a cure, I didn’t see the ominous cloud that lay over the chronic sufferers.
Now what do I do with myself, I wonder? I’ve got lots of ideas. I also have a whole roomful of bad life habits now that I used to adapt to being sick, having low energy, anxiety over what awful thing was coming next, and a dread that was paved solidly under every day, week, month, year I lived while I waited.
I’m down to the pavement now. Most of the dread is gone, but I’m still standing in the parking lot of life wondering how to manage my new life. I need new habits to add to the few, old, good habits I’d formed and held onto.
I know I need to turn onto a new road, lane, highway, whatever opens up. But I did get the memo that I was going to be building the road myself…along with a whole host of friends, acquaintances, family members not sick of me yet, transplant coordinators, my pharmacists, books and their authors, Rachel Maddow, podcasts, and just plain writing.
You’ll be hearing from me much more frequently now. And eventually I’ll publish the first novel I wrote while I was sick — one good new habit.