Post 9: Losing my Place in the World
The day that I fully realized just how much cirrhosis had changed my life, happened about a year after my diagnosis. I had been mysteriously sick for about 9 months, in and out of hospitals, before getting the shocking news that I had end stage liver disease. I spent the next 9 months in survival mode, just trying to hang on. Eventually my health stabilized. I thought that meant the hard part was over, but it was honestly just beginning.
Once my health was stable enough to sit down and take stock of my “new” life, I was stunned by how different it looked. My daughter’s dad had left when I first began to get sick, 3 days before Christmas of 2015. It was a heartbreak, but I had no time to feel it, because I rapidly got worse during the months afterwards. One by one, my friends disappeared too. I had changed and many people seemed to feel that the needier person I became with chronic illness wasn’t the type of relationship they signed up for. My circle rapidly got smaller and smaller.
After diagnosis, mid-2016, my daughter and I had to move in with my mom for a few months, since I needed a lot of care. When we finally moved back home again… it was, very literally, a broken home. I’d been so sick for months, that I’d never even cleaned the mess that was left behind when her dad moved away. Half of the closet was bare, our joint office had empty spaces where his things had been, and those empty spaces mirrored the emptiness in my heart.
One day, as I was trying to use some of my limited energy to work on pulling the house back together again, I was reorganizing a wall of bookshelves. That was the moment the full impact of all of the life changes hit me, hard. My loss was reflected in the titles of those books on the shelves, cover after cover, reminding me of all the pieces of myself that I’d lost.
First, the parenting books. Abby had turned 6 by this time, but I still had a dozen books on “what to expect,” and tips for new moms. I’d saved them for years, just in case. But now, it wasn’t sensible to dream of ever having another baby. The family that I once thought I’d have, with two parents in love raising a couple of beautiful siblings together – that was gone forever. He was gone, I was getting ever-closer to 40, and with the growing list of health problems I had, another chance at pregnancy seemed gone too.
Next were the business books. Titles like “The Barefoot Executive,” teaching how to balance building a business while building a family. And the “Home Business Startup Bible,” that I referred to dozens of times, early in my entrepreneur life. But that was a path that I realized I was no longer traveling. In my “former life,” before cirrhosis, I had been so ambitious! I’d taught myself how to use WordPress and do basic computer coding, started my own successful parenting blog, and I’d created meaningful relationships with both my readers and major brands. I’d built a reputation as a skilled freelance writer who was savvy with social media. I was doing public speaking at conferences for other women bloggers around the country. I had spent years hustling hard, finally reached a long-awaited goal of a six-figure year, all by myself… right before things crashed. I sat staring at those book covers, with my dream job out of reach, and the shame of having to rely on a disability check to survive. The fatigue and unpredictability of symptoms makes it difficult to work. But the unpredictability of hepatic encephalopathy is worse - even when my energy level is up, it’s a struggle to think clearly enough to create high-quality work. That struggle makes the fast-paced hustle of my previous career path simply out of reach now, since any work that I do is sporadic, forced to be reliant on my ever-changing health.
Even some of the hobby books on my shelves felt like they represented a life that I was no longer living, now that I had chronic pain and endless fatigue. The books about creating a homestead, caring for chickens and goats, growing a vegetable garden… How would I start those types of things now? How would I have the energy to keep other things alive, when I was fighting so hard just to keep myself alive?
Becoming aware of all of this loss, and realizing how many pieces of my identity had been stripped away from me – it was incredibly difficult to accept. I felt like I’d lost my place in the world. My old goals and dreams were irrelevant and belonged to a different version of myself. Not being able to earn an income, have a social life, or even keep up with housework – these made me feel like I wasn’t even useful anymore. I felt like just a burden. As someone who has always taken pride in hard work and accomplishments, these losses really robbed me of my confidence.
But eventually I realized that not everything that is broken can be fixed. That sometimes, it’s best to just accept that some parts of life are over, and be at peace with their passing. And I opened myself up to the realization that it was time to start over, and create something new.
So now, I’m adding new books to my shelves. Titles like, “The Anatomy of Hope,” on how people prevail in the face of illness. “This is How,” on surviving what you think you can’t. And “Fitting in is Overrated,” the survival guide for anyone who has ever felt like an outsider. I took the time to grieve my losses, and now I’m enthusiastically embracing the idea of reinvention. Cirrhosis has changed the entire course of my life – but I don’t have to let that course be a bad one.