To say I “freaked out” when lockdown was announced for my county is putting it mildly. Every newly canceled event disrupted my equanimity a little more, and then the announcement of my church closing had me throwing myself Disney-princess style onto my bed sobbing. After not being in counseling for over a year, I booked myself some virtual visits because my depression was reaching “danger Will Robinson” levels. Despite my inital emotional and mental instability, and a couple months’ troubled sleep, my life didn’t actually change much.

Here’s how post-concussion syndrome (PCS) prepared me for life in 2020 and beyond:

Home as my headquarters

Before Covid-19, I would say the average adult would spend the majority of daylight hours away from home- work, gym, errands, social engagements, leisure activities, etc. When I say, “I live at home,” I LIVE AT HOME. I leave the house only for medical appointments, support groups and the occasional meet up with a friend. Part of this is because of my lack of energy and part of this is my inability to safely operate an automobile. Not feeling up to participating in family events has lead to many nights of takeout and streaming church from home. So when Corona came around not much changed there.

No 9-to-5

So many people lost their jobs in 2020 and had to apply for unemployment. Many had to work from home and work was completed when it was completed due to pressing distractions like children and/or sick family members. I’ve been unable to seek paid employment since 2016 and currently rely on government assistance for health issurance and financial support. I understand all too well the frustration of not earning your own paycheck and the loss of identity not working leaves you with.

Long-distance friendships

I moved back in with my family after university and knew it would be like starting fresh in a new city since my social ties from high school were nill. But of course what I didn’t expect was to still be here after five years with PCS, which severely limits one’s ability to meet and keep acquaintances. All this to say, all but one of my friendships became long distance. I’ve been relying on video chat long before lockdown.

Cautious lifestyle

One of the natural side effects of PCS is caution. It’s easier to become re-concussed after a few concussions so post-concussion syndrome can easily become “fear-of-life syndrome.” Something as mundane as riding shotgun in a car can be anxiety provoking while thinking of the possibility of wiplash-causing fender benders. A common cold can feel like the flu if you have PCS, and the idea of having to miss a pain-reducing appointment because of the sniffles can still put my mind into a tailspin.

When the severity of Covid registered with my fatigued brain, it was like, “OH NO NO! HECK NO! WE ARE NOT GETTING THAT!” Thus my natural caution came in handy. If I got Covid it would mean the possibility of increased neurological difficulties, and a two week or more break in medical care, not to mention the possibility of spreading the virus to others.

General air of uncertainty

PCS is one of those illnesses that doesn’t follow a timetable or any straight lines for that matter. The first neurologist I ever saw told me it may take two weeks to feel better or it could take two years. It’s impossible to tell because everyone’s brain is different. I also can’t really predict what kind of day I’m going to have tomorrow or even the rest of today. Will I be headachy? Cognitive foggy? Vertigo-y? Low energy or lower energy? They say to take one day at a time and I literally have to follow this cliché because I never know what the day will be like, even if there’s only an hour left of it. Things can change that fast.

With the pandemic, a person’s life could change from one intake of breath to the next. One day you’re at Trader Joe’s buying Cookie Butter, and the next you’re Covid positive and have to relay that info to everyone you’ve been in contact with for the last two weeks. One minute you’re stoked about your upcoming road trip or your island vacation, and the next you get the email, phone call or text that will bum you out for the rest of the year.

……

So prepared? Yes, I believe I was better prepared for life in 2020 than the healthy, able-bodied section of the public. I’m grateful this pandemic has given me the chance to better explain what life is like for us Spoonies and the visibly and invisibly disabled. Of course I wish Covid didn’t exist at all, but here we are.

Did I expect something like the disaster of last year to happen? No, not ever. Even after reading apocalyptic literature like the Left Behind series and way too many mainstream YA novels. Even after learning about the spread of SARS and other viruses. No, not ever. How could anyone have expected this?

Love Always,

Elisa