If there’s anything we can all agree on right now, it’s that nothing is normal at the moment.
Maybe you’ve had to work or do school at home for nine months. Your favorite businesses are closing down. Most everyone is wearing masks on the rare occasions when you brave the grocery store. There is a constant sense of impending doom that we have all become accustomed to, for one reason or another.
In my house, the silver lining of the world being upside down has been more time with family. All of the adult kids and spouses have been back for months. Not normal, but a positive thing nonetheless.
A few days ago, we were all sitting around the den when it all hit me…
This was one of the first normal Christmases I’d had. No one was asking when I’d had ibuprofen last. There was no trying to suppress my tics, no depression, and no worrying about insurance battles.
After losing and regaining my mind, sometimes nothing is sweeter than the ordinary moments.
You see, it was only a few years ago that I lost so much of myself to brain inflammation. Most people can never imagine what it’s like to not only lose your whole personality, but the cognitive skills that you prized so much and the passion for what you’ve spent most of your life dreaming about.
I don’t think I’ve ever quite articulated on this blog how violating it felt for Basal Ganglia Encephalitis to not just break into my life and make me “sick,” but break into my life and steal who I was as a person. On top of the shock that I could get sick in the first place, there was so much shame and pain and anger and fear that I’d never be who I was before. I wasn’t sure I’d ever get better, and I didn’t know what would remain if the disease were ever under control.
And as I started to get better, paradoxically, I became more aware of how sick I was. When I was so ill that I was sitting in a dark room by myself all day and only thinking about wanting to die, I couldn’t appreciate how compromised my cognition was. I was too bad off to even think about doing something that required higher level thought processes. But after IV steroids cleared the worst of my symptoms, there was this big “oh sh*t” moment when the reality of my ordeal hit me, and I finally understood how far from my full self I still was.
After the last time I had a major relapse in 2017, I spent the next year worrying if I would be able to have that life I had wanted for so long. My symptoms were better, but I wasn’t fully myself, and this is something that no symptom scale will ever measure adequately.
Would I ever get past the low-level depression that made everything so mentally taxing? Could I ever think clearly enough to work in my field? Would I ever regain the passion that had led me to this career choice in the first place, which now seemed mostly gone? Would I ever feel fully part of the world ever again?
After I almost miraculously finished college thanks to the IV steroids, I had to take eight full months off from just about everything except therapy to allow my brain to heal—no looking for jobs, no working at home, no pursuing my career in any major way. Eight. Entire. Months. Eight months when I thought I was losing ground as I watched classmates moving forward with their lives in amazing ways, getting cool jobs, and finding spouses. Eight months when I felt less-than for not even being able to work part-time at McDonald’s. Eight months when I was so ashamed of what happened to me that I disconnected from almost everyone and loathed when I met people who asked what I “did.”
But little by little, I began to heal and regain those higher level processes. My family and mentors kept reminding me of who I was even when I wanted to forget, and I think that’s one of the most important things family and friends of a person with encephalitis or PANS can do.
You have to keep thinking of your person like who they are on the inside—not like the illness makes them seem on the outside. You have to strike the balance of keeping them connected to their favorite things pre-illness without pushing them so much that you make them sad they can’t participate anymore. You have to treat them not like a poor sick person to be pitied, but like the bravest human being you’ve ever met, because you’ll never know most of the mental battles they’re facing just to get through each moment.
Almost three years post-recovery, I don’t often think about that dark time in my life when I wasn’t myself. I don’t often reflect on the reality that I might not be here at all, or I might be shoved away in an institution, had my illness not been properly identified as medical rather than mental. I forget that horrible, sinking feeling that life as I knew it was over.
But once in a while, it all comes back, and I realize how incredibly lucky I am to be alive and mentally well.
There is nothing normal about the world right now, but I think that’s why being my normal has struck me so profoundly. Things outside my home are seriously messed up, but inside, at least I’m alright in ways I didn’t think I’d ever be again. At least I have my mind. At least I have my family. At least I have a job that I’ve worked towards for so many years.
If you’re currently recovering from PANS or encephalitis right now, you may not be able to believe or even think about it, but someday, when you get better, you’ll appreciate those normal moments like never before.
And I believe that life is lived in the normal moments as much as in the seemingly “important” ones. Life isn’t just in graduation, in jobs, in marriage, and in travels to faraway lands. Life is in the sunrises, the Sunday pancakes, the family movie nights, the drinks with friends, and even in the traffic jams. You may not be well enough to even think about what it means to live right now, but someday you’ll feel alive again in ways like never before.
Indeed, I suspect that all of us will never look at “normal” life ever again once this pandemic is over. Much damage has happened to the world and people’s lives on account of the virus, and tragically, more is yet to come.
But my hope is that in 2021, the world will start to heal. I want the pandemic to end as soon as possible, and that’s why I hope all of you will keep social distancing and doing what you can to stop the spread. But my hope is also that we won’t forget that joy that we’ll have when we can all go out and celebrate safely—the joy when no one is worried about losing their lives, their health, or their jobs. My hope is that when the world is right side up again, we will appreciate the normal things like never before.
If pandemic recovery is anything like PANS recovery, we’ll all go back to our usual lives when all is said and done as best we can, and we’ll try to forget about this horribly dark time. But may we never forget all of the goodness there is in the ordinary parts of life.