My Retreat To Romance
The pandemic has triggered a wave of reflections about how hard it is to stay at home, but many of us have been doing it for years.
I originally shared a version of this story on Episode 131 of the Stories We Don’t Tell Podcast.
As of last week, I’ve officially read 200 romance novels. Most of them have been set in 19th century England, although occasionally characters travel to Europe or America. Almost all of the heroes and heroines have been aristocrats, which I find comforting and appalling at the same time. But the funny thing is that I don’t think I’d ever read a romance novel before I began living most of my life at home three and a half years ago.
That’s when I got sick, and I couldn’t keep up with my life anymore. My body began to misbehave in sudden and unexpected ways, my brain grew foggy, and I became extremely unreliable in a way that was antithetical to everything I’d ever cared about.
At first, I believed that if I could just catch up on all the sleep I’d been missing, then my body would bounce back from its apparent burnout. I ate only the most nourishing foods and I slept whenever I needed to and I hoped that eventually, inevitably, things would get better.
But instead of getting better, things slowly got worse. And I’m not trying to be vague about what that means, I just find myself at a loss whenever I try to explain the unpredictable but crushing fatigue and the cognitive decline that come along with chronic illness. So let me just tell you that on my very best days, I can make my own coffee and take a trip into town and maybe organize the thoughts in my brain into some kind of story that articulates what this all feels like. And on my very worst days, my legs shake so much that I need to lean on my husband to travel from the bed to the bathroom.
When I first began my life at home, it was hard for people to understand what I did all day. It seemed like everyone imagined that I must have so much free time for learning and cleaning and creative projects. When I first began my life at home, most people I knew had never spent days or weeks at home without cease. So I felt defensive about how I spent my time, and I felt like I had to justify every bad day, every hour spent in bed.
So I spent those hours in another world. In a fictionalized version of 19th century England, where it’s totally normal to spend half the day in bed. Where nobody bats an eye that you rarely prepare your own breakfast. In this world, there are strong smart women who aren’t allowed to work, who are constantly held back by forces beyond their control.
There are very few novels written about women whose unpredictable bodies prevent them from pursuing their dreams, but there is a whole world of novels about women who are prevented from leaving the house regularly by the patriarchal rules of their Society.
Of course, these ladies are much better at correspondence than I am. When I first began living most of my life at home, I would go weeks without checking any of my inboxes because I didn’t know how to explain to people that most human interaction had become painful. It was emotionally painful, of course, because I’d torn myself away from people I cared about in a desperate effort to claw back some semblance of wellbeing. But it was physically painful too. My body has a firm but fluctuating capacity to communicate with other people, and when I try to push past that capacity my body shuts down. Sometimes that means I can only reply to texts or emails once a week. Sometimes less. My silence has cost me quite a few relationships.
I only read or listen to romance novels on days when my brain can’t handle anything more complicated. This isn’t a dig at the genre, it’s just that the genre requires a happy ending and so I waste no energy worrying about unexpected tragedy or the details of a conflict that I’m certain will be resolved by the end of the book. Some romance novels have the graphic sex scenes that you might think define the genre, while many others have long elaborate kisses that make me grimace and wonder if people really spend that much time erotically licking the insides of each other’s mouths.
During particularly difficult symptom flares, I’ll finish a book a day. So you can see why 200 romance novels is a difficult landmark to celebrate.
After a tumultuous first year at home when my health got worse and then better and then worse again, I began to stabilize. If I rested enough in anticipation and recuperation, I could visit my old friends in the cities where they live and perform a version of normal that I’d missed so much. I could budget my energy reliably enough to schedule video chats with people I care about and I could retreat to 19th century England to recover when I felt myself beginning to break down again.
And then this awful thing happened in the outside world, and suddenly everyone I know is spending life at home too. Suddenly people who implied it must be nice for me to spend so much time at home are talking publicly about how difficult it is.
All of a sudden everyone is having virtual parties and live online concerts, and reaching out to each other to acknowledge that life at home can be very very lonely.
I want to be able to tell you that I’m grateful. I wish I could tell you that suddenly I felt more connected to the world outside my home. But that’s not what happened for me.
What happened for me is that my carefully balanced energy budget has been thrown into chaos because all of the busy-ness of the outside world has come home. I’ve become unreliable again, drowning under the wave of check-in texts and emails and group video chats. I start shaking at the smallest provocation and I’m confronted with how much fuller life could be at home, if only my body would cooperate. And I’m reading headlines written by people who find their busy lives at home to be empty, who can’t even fathom what it would be like to have a body that is incapacitated for days by a single poorly timed zoom call.
So I’ve found myself spending more time in 19th century England again. I’ve barely been able to leave my bed this week because even brushing my teeth sets off a wave of violent spasms that make everything else more difficult. But even in bed, I can feel connected and emotionally invested and whole when I accompany these assorted ladies and gentlemen to their happily ever afters, because they make me happy too.
No End In Sight is a place to read and share stories about chronic illness in our own voices. You can also listen to these types of stories on the No End In Sight Podcast.
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Previously on No End In Sight — The Trauma Of Unexpected Surgery