This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2021. Follow along!
Well, much like everything else in this past year, I had every intent of being ahead of the game for the Epilepsy Blog Relay. I had a draft outline in February. And then, like so much, life happened. I was hit by a major migraine earlier in the month (yay epilepsy comorbidities), heightened stress at work (huzzah for endless Zoom calls), and then my two littles were excluded from school due to a potential exposure to a COVID positive person. And just like that it is the end of the month, and well, here we are in June.
But this spring is a perfect parallel for our year with COVID, and for many of us, our daily lives with epilepsy. In a post a number of years ago, I referred to having epilepsy as being akin to having a special superpower. In that blog, I finished by reflecting on what those of us with invisible disabilities, or our caretakers, can teach our over-harried, type A, success-obsessed culture. This past year has brought those reflections into even more prominence.
What to keep
As our world dealt with the reality of being confined to home, many of us felt the pressure in unique ways. But perhaps we also found some freedom. I, for one, found that I was finally able to get the right amount of sleep (even with a baby). Having the flexibility of a schedule at home has meant that I am perhaps more rested than I have been in a long time. And this is something I’ve want to keep going when I do return to a physical office.
Slowing down has also brought perspective on how much I say “yes” to, even when I shouldn’t. This has always been my most challenging part of having epilepsy. I am a social person. I love being with others. I overcommit my schedule. And even though many things in day-to-day life bring me great joy, it also wears me out. Physically, I can feel my brain being overstimulated when I don’t take time for quiet. In years past, busy work schedules combined with other social obligations often led to me being more stressed and more prone to seizures and auras. This past year gave me the ability to press pause on all of that. Granted, in some ways trying to work from home with two littles provided a different type of stimulation, it also eased the tempo and brought new opportunities to my life.
When things start to return to normal, there’s no doubt that I will be overjoyed at seeing family and friends, and embracing those who mean so much to me. But I hope that my family unit can keep hold of the slower pace and recognize the health it brings.
On a more advocacy-related note, this past year has brought up many important (and overdue) conversations around health, wellness, work life integration, and even what does it mean to be in different levels of wellness. If you don’t already, I highly recommend following Alice Wong and Matthew Cortland on social media. Both individuals are incredible writers and have some great reflections on being disabled and what it means with COVID-care, receiving vaccines, and more.
What to leave behind
In short this year has amplified the arguments and realities that many of us have had for years and brought issues into a more public, and dare I say, acceptable milieu? Business gurus, and Fortune 500 thinkers, and organizations from McKinsey, to Gartner, to Inc, the Washington Post and more are now talking about the importance of wellness. And not just you-get-gym-membership-as-a-work-perk wellness (though that is not bad), but having the deeper questions. Why do we work the hours we work? Why are we success-oriented? What if we could work differently? What if we do work from home since we’ve proven we can? I believe that as advocates for those with epilepsy, we take part in these national conversations. It is really a unique time to help make arguments for changes that enable us all to have a more healthy lifestyle.
And in the meantime, for all of us, I think we should take some time and reflect (in whatever way is most meaningful) on just what we have done over the past year. If you have somehow managed to keep your head above water, balancing a condition like epilepsy, with everything else, then I take my hat off to you. We really are superheroes.
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