This piece was written for the Brain Injury Association of York Region’s TBI Survivor Blog Series. To see the original post, click here.
How my brain injury prepared me for the COVID lockdownsAugust 7, 2020
Life is different under lockdown. We are stuck in our homes much more than we’re used to. We are cut off from family and friends. The spaces and places we used to go every day are closed off to us. Left alone with our thoughts and worries, we are isolated, frustrated, and scared. It’s made all the more difficult by the fact that nothing like this has ever happened to us before. But for me and many others, it feels familiar. Somehow, my brain injury has prepared me for this.
I got concussions all throughout my life. My family jokes that it’s because I was born with a big head. I’ve tripped and fell on my head as a kid, slipped on ice while skating; I was a klutz who enjoyed doing slightly risky hobbies. I usually become dizzy and fatigued after, but things went back to normal after a few days. But in 2017, after a serious bike accident that led me to the ER and a succeeding snowboarding wipeout the year after, my symptoms lasted way beyond usual. I was constantly dizzy, in pain, tired and anxious. I was diagnosed with Post-Concussion Syndrome (PCS), which summed up the whole tangle of symptoms I was experiencing but didn’t know how to manage. I took a leave from my graphic design job because I couldn’t handle screen-time for more than an hour. After a year of devoting my time and money to seeing all kinds of therapists who helped me untangle my symptoms, I was able to return to work full-time. Then the COVID lockdowns hit. Suddenly, everyone was experiencing the confusion, isolation, and hopelessness that seemed all too familiar to me last year. Although I’m still healing, I knew I was better equipped this time around. Here are some similarities I noticed between my year of brain injury and quarantine:
1. Finding social support. When lockdown started, we were cut off from the places where we’d normally encounter others. Places of gathering including malls, offices, cafes, & restaurants were suddenly off-limits. Our social circle shrunk to ‘bubbles’ of 5-10 people. For many folks, having a social bubble just isn’t possible due to physical, mental, or financial barriers. This social isolation increases the risk for anxiety and depression, as well as a laundry list of physical conditions. In order to be resilient and get through tough times, we need encouragement, connection, and support from our social circles, but COVID cut off our main points of access to that.
When I was at my worst after my brain injury, my social circle shrunk drastically as well. Bars, parties, and concerts were places where I usually could see my friends. Because of new sensory issues, large and noisy gatherings were off the table. I became fatigued often and had frequent panic attacks. I got tired of explaining my situation to everyone, so I became super flaky and withdrew. It made me incredibly lonely and I was hard on myself for it. However, my close friends stayed connected to me virtually; we texted and video chatted often. It made it easier for me to reach out for help when we connected on a regular basis, just sharing what we did in the day. I also found online support for concussion patients. Keeping in touch with people helped me get through moments where my symptoms really got me down. In the end, I realized I didn’t need to be constantly going out and have a huge circle of friends to be happy with my social life. Nowadays, I keep in touch with groups of friends through virtual hangouts like playing Jackbox or watching shows together on Netflix Party.
2. Life balance and shifting of values. I think in the past few months; we’ve all felt a collective slowing down of time. People are diversifying their interests; with more time on their hands they are able to pursue new hobbies such as baking bread or sewing masks. Since most are working remotely full-time for a bit, people are forced to confront themselves and have started to question the places they currently live, the people they usually see, and the things that fill up their time.
Pre-concussion, I was a workaholic. I would take freelance jobs on top of my full-time work, and remedy my busy schedule with lots of alcohol and caffeine. I had bad boundaries at work that sucked up most of my time, so my health and relationships suffered because of it. My PCS symptoms forced me to spend less time sitting at the computer and doing work, and more time on activities that involved movement and monotony. I started walking a lot, which thankfully was a tolerable activity for me. It became very healing as it allowed me to explore my neighbourhood and see other people, and gave me time to think (but not overthink). I was ultimately forced to do less in a day, so I had to prioritize the things that really mattered. I had time to do better in my relationships, confront my mental health, and become more present in my body. Maybe this drastic limitation of what activities we can lets us ask ourselves what is worth carrying into the future, and what we can let go of.
3. The ‘New Normal’. We talk a lot about what our ‘new normal’ looks like these days. Whether that’s adjusting to wearing masks in public spaces, the uncertainty of business, or future travel plans being thrown out of the window, there’s a lot that is shifting and we are forced to accept. Many are grieving the loss of what was in the past.
This term of ‘new normal’ actually existed pre-COVID; it’s something used a lot in the brain injury community. Patients are often guided by their therapists to confront their ‘new normal’ when dealing with a diagnosis. When the head is shaken up, some neural connections can get destroyed and one may find that they aren’t able to do some tasks in the same way anymore. I found that my capacity for memory and focus were drastically reduced; I was slower and got overwhelmed with information often. This was devastating for me and I grieved the loss of who I used to be. However, humans are extremely adaptable and the brain is capable of creating new neural pathways. Although I may not return to the capacity I was at before, with help I was able to find workarounds and accommodations to achieve the things I wanted. I write everything in lists now, and use my calendar for reminders. I don’t multi-task anymore and try to do things at a slower pace. I still constantly struggle with accepting what my body can’t do, but I have to shift into allowing my current situation and focusing on what can be done. Brain injury isn’t a problem solved and we can see that COVID won’t be for a little while, so we need to learn strategies that will help us adapt and cope.
I think a lot about what we all learn from the present situation. I’m hopeful that this collective experience allows the public to get a glimpse of what life has been like for so many pre-COVID. I was lucky to have the resources I needed to get to good health and reflect on these things, but for so many that is not the reality. I’ve met many survivors who are living in the dark, struggling to seek or afford the treatment they need. I’m seeing that access to brain injury care and COVID care are similar. It’s a deep-rooted problem that depends on your race, age and social status. Noticing this inaccessibility in care led me to pursue a Masters in Inclusive Design at OCAD this fall, and I’m hoping I can continue to explore that.
December 30, 2020
I’m looking back on this and writing during another Ontario lockdown. Although I can say that these strategies still help, I wasn’t prepared for the second wave. I think the prolonged crisis mode is getting to a lot of us 🙃
Some days suck a lot and some days are better. In some way, I can still tie that back to my brain injury. The process of healing wasn’t linear for me, and on many days I felt like I wasn’t making progress or I was even going backwards. I think it’s a reminder to myself to let go of the expectations I have of what everything ‘should look like right now’ and enjoy what’s around.