And what do you do?

Still figuring out how to answer this frequently-asked question while taking a break from work due to chronic illness

On the day I suffered sudden cardiac arrest, I’d recently given notice to one employer and accepted a remote job elsewhere. The reason for that decision was straightforward: I’d finally caught COVID-19 despite being thrice boosted, masking, and remaining in hiding as much as possible. I’d reported my first breakthrough seizure in 3.5 years to the DMV, and lost my driver’s license. I needed a job that wouldn’t require commuting or travel.

As I gradually became aware of my situation in the hospital, I struggled to grasp what was going on with my body. It was easier to set my sights on the new gig. That felt normal and exciting. So I did what I’d always done, and what my native culture always celebrates. To use Sheryl Sandberg’s tired phrase, I leaned in.

I started security clearance paperwork even before I was discharged from my hospital bed. My husband drove me to D.C. twice for in-processing. I began my new job exactly one month after my cardiac arrest.

Here’s the cognitively intact part: I managed to telework for nearly six months. I could wrangle myself into some semblance of order to attend virtual meetings, perform writing assignments, aid in developing a change management course, and consult with clients around doctor’s visits, all while navigating new pop-up symptoms. I could do that pretty well. I’d spent a lifetime ignoring my physical reality and my own biology to get the job done. Meanwhile, my body and life fell apart around me, because I couldn’t do anything else.

My best hours each day were from when I woke up to about 3 p.m., so I gave my best self to work. I dragged tired bones to the dinner table with nothing left over for my husband. Even once I stopped sleeping 12+ hours per night and could walk a bit further around the neighborhood each morning, I found that I was missing most of what gave me joy in order to muster the energy to work. Weekends were spent recovering, with little to no energy for fun.

When my contract reached a natural stopping point, I wondered it might be an opportunity to do something I’d never done before. I talked to my husband about whether we could afford for me to hit the pause button on my career. It wasn’t great timing—my medical expenses were skyrocketing and we’d just found out that our old house needed a new standing seam metal roof—but we wouldn’t starve. We decided that we could afford to find out what would happen if I hit pause. We couldn’t afford to find out what would happen if I didn’t.

In mid-August, I stopped working. My employer looked into helping me with short-term disability, but pre-existing clauses made me ineligible for their plan. I wasn’t fired, so I didn’t qualify for unemployment. FMLA didn’t apply because I hadn’t stuck it out a full year in my new job yet. Even though I did expect to be unable to work for a year or more, the application process for SSA disability payments was completely demoralizing. I had several qualifying diagnoses, but none quite met the specific criteria. In short, I slipped through every crack, and there was no financial assistance available.

Turns out that in this great country, you can be found clinically dead, get resuscitated against all odds, and be expected to hit the ground running. In fact, I expected that of myself. Until I hit the absolute wall.

What I do now: Have deep, silent conversations with Nosie.

It’s not like I lay in bed all day. Besides writing these posts and working on editing my memoir, I volunteer for a few groups. I’m planting edible and native shrubs and finally cleaning up the most untended corners of our yard. I’m finally making the time to harvest our black walnuts. I also have an ongoing chores list that Chris and I created so that I can contribute to the running of the household. Meanwhile, I buy as little as possible. The gift we’re giving me is time, and that comes at a cost.

I’m only two months into this experiment and I still feel on edge. I keep catching myself trying to seek a new job for myself. Any job. One day: researching yoga instructor training. Oops! Another day: I should go to seminary. What?! Unlike being on a vacation, where you know you will eventually return not just to a ton of emails but to your purposeful title and hard-earned status, I am creating a black hole in my resume and a completely uncertain future. It’s hard to sit with that. It’s also hard to explain.

At gatherings, people ask my husband and I what we do. Yes, even here in rural Virginia, it’s one of the first things new friends want to know. Folks typically assume that we both work and jump straight to: “do you work from home?” How do I answer this question? I spend a lot of time writing these days, and I will publish a book soon—does that make me a “writer?” A lot of writers write for free most of their lives…but do I identify as a writer?

I doubt it’s acceptable to say, “well, I stay pretty busy being sick and going to doctors.” I tried saying “I’m taking a break” to one woman. She said she was, too—but her break sounded a lot more fun and optional. I don’t think that’s the verbiage I want to use going forward.

Maybe I’ll borrow Dawn Foster’s phrase and say that I’m leaning out.

As one of the gazillions of readers who couldn’t make it through Sandberg’s Lean In, I adore this cover

After a lifetime of being told I need to lean in—to push through all manner of hardship, to ignore my own wants and needs and health concerns, to make my resume stand out from the crowd, to strive to become a rock star female representative of the 1%—I temporarily died, and all of that striving seems really stupid in hindsight. I wish I hadn’t leaned in. It wasn’t worth it. I never got anywhere near the 1%, and I wasted a lot of time on things that aren’t the life or relationships I really wanted.

Being declared cognitively intact after sudden cardiac arrest means that I can meet most of life’s normal demands. Of course, nothing about my life right now is normal. Being able to think, plan, and function on a low level doesn’t mean I’m up to the full-time job that is navigating our healthcare system in the aftermath of surviving sudden cardiac arrest. I got really worried in August when I could no longer trust myself to take my pills correctly. If I hadn’t had Chris’s support, the burnout, ongoing neurological complications, and PTSD could have lost me a lot more than my career.

So, I reached a crossroads: continue working as a change management consultant for others, or work to change my life and manage my health. I chose to work for my life.

Consider: the 10-year survival rates in patients with out-of-hospital cardiac arrest who survive the initial hospital stay are about 63%. A third of us are dead within ten years. I wonder how many of those in the studies carry an epilepsy diagnosis on top of heart failure, like I do. I wonder how much of the data was collected pre-pandemic, and how COVID will mess with the odds. It’s anybody’s guess what my own odds are. Maybe this is why I can’t get a prognosis out of any of my doctors. In any case, time does feel extra important now.

Every day with my husband is precious. So I’m prioritizing what I know will matter a lot more, in the end, than my LinkedIn profile, cushy vacations, or consumer goods. For now, I’m leaning out.