The next normal
So often we picture a new year as a clean slate with new opportunities and possibilities for change. Even though I’ve long abandoned the idea of resolutions, I still find myself assessing old habits and trying on new goals. The difference is that this year I am admittedly setting those goals lower than usual because I *think* I have finally learned to account for my mental and emotional capacity. Ie: just because I physically can, doesn’t mean I emotionally can.
And thank goodness because we are only one week into January and I’m already feeling the weight of the world.
No matter how much I wish each new year came to us as crisp and clean as a freshly laundered shirt, it rarely works out that way. Some stains have a tendency to linger. That was how I felt when, after taking a two-week break from reading the news each morning, I woke up to read that our president had invaded a foreign country and was threatening to invade others.
And then just a few days ago, the murder of Renee Nicole Good. As if we needed the reminder, amidst the daily gun violence, that absolutely none of us are safe under this government. It is a lot, and it’s only the first week of the year.
Perhaps the most challenging part of living in a time like this, where news alerts are sent to our phones within moments of their occurring, is that we still must live our regular lives. I am still scheduling doctor appointments, making dinner, and reading bedtime stories. I am watching TV shows, scrolling social media, and doing the daily wordle. While people are being shot and bombs are being dropped, my life remains relatively unchanged, and it is disorienting AF.
This isn’t a new feeling, though, is it? We’ve been living like this for a year now. I think the hardest part about it is that while so many of us hoped that 2025 would be better than 2026, we failed (or chose not) to recognize that as long as this administration was still in charge with unchecked power the background trauma of the daily news cycle is not going anywhere. And scarier yet, is that it is probably only a matter of time until we ARE directly impacted. It’s like participating in the most erratic game of eenie meenie miney mo, never knowing when you will be “it”.
Yet, aside from donating, protesting, and calling our representatives, there isn’t much else the average citizen can do until we vote in the midterms. So, we keep on living our lives. Come to think of it, I don’t know of a group better equipped for times like these than those with chronic illness and their caregivers.
Caring for Adelaide, I lived in constant fear of the next seizure, hospitalization, or oxygen drop AND somehow still found joy in our life. It wasn’t that I ignored the fear, I addressed it in google searches, talks with doctors, and incessant record taking. But we still made space for laughter, couch cuddles, and even vacations.
The way medically-complex/chronically ill people and their caregivers accomplish this is by accepting the disease. That doesn’t mean they don’t still try to find the best doctors and treatments, but they accept that their illness is a part of their life. The sick parts still suck, but when we spend less energy bemoaning our situation, we can spend more time enjoying the pieces of our life that make us happy.
In terms of the current administration, this looks like accepting that the president is not going anywhere for at least three more years. It means accepting the dread felt before reading the news each morning. It means preparing ourselves for more shootings and more invasions. They will still be devastating to hear about, and we still push back however we can – but we have to accept our new reality, our new normal.
Just like a patient with uncontrolled epilepsy, we don’t get to be surprised when the next seizure occurs. We can be disappointed, disgusted, and disheartened – but not surprised. Instead, we assess, learn what we can, and move forward. We live our lives and we find the joy in between the seizures.
Never thought I’d write something comparing epilepsy to an American presidency, but here we are. Welcome to 2026, may we all be able to find joy between the seizures.
Photo ID: 6yo Jackson, 3yo Adelaide with her thumb in her mouth, and Kelly, all cuddled on the couch in their pj's and smiling. Finding the joy between the seizures.
