Dear 2015 me,
I know you feel like a stranger in your own life right now while you’re the sickest you’ve ever been with PANS. I know you’re scared, lonely, and unsure if there will ever be anything more to your life than this illness that attacked your brain and kidnapped you from your own body. I know you feel invisible because of all the hours you’re trapped in your room and all the days when you’re trapped in a mind you no longer recognize. You feel unseen because no one knows how much it takes for you to accomplish what others take for granted.
But I see you. And before long, other people will see you for who you are, too.
I see you as you struggle to get to class every morning, only to have no idea what’s happening all day long because of your foggy mind. I see you fall apart in your dorm each night, exhausted from holding yourself together, and wondering how many more days you can possibly survive. I see you panicking at the mere thought of getting out of bed tomorrow. And I see you continue to go to class day after day after day.
But 2015 me, this is not how your whole life will be.
I see you washing and rewashing your hands over and over again every afternoon. I see your Obsessive-Compulsive Disorder suddenly freezing you in place on your carpet so you will step on the right spot the right number of times to get that icky feeling out of your brain. I see you covering the floor in Saran wrap because the carpet never feels “right” enough. I see you stuck for two hours at the kitchen table chair, too overwhelmed by the compulsions you know you’ll need to traverse the fifteen feet to your room.
I see you when the tics take control of your body. I see you fidgeting constantly to disguise the involuntary chorea movements that won’t relent. I see you when they cause your legs to give out, and when you crash onto the floor. I see you when fight-or-flight kicks in and you go running out the door late at night only for hallucinations to greet you. But I see your bravery in continuing to stand up to the same symptoms and fears over and over and over again.
2015 me, this is why you are strong even when you’re terrified.
I see you so ill that the mere concept of living in a healthy mind someday is too alien for you to conjure. I see you swiping through old photographs wondering what happened to that happy, sociable person. I see your tears as you wonder if you will ever be yourself ever again. And yet I see you continue to create unique experiences and new memories as you are right now so that you can see your illness hasn’t quite stolen everything from you.
I see you as you’ve stopped dreaming about your future and who you’re going to become because it takes all you have to get through the present. I see you fumble for an answer when people ask what you’ll do when (or, to you, if) you finish college. I see how you’ve forgotten what it feels like to be alive, though you’re not fully aware of this yet. I see that sometimes the overwhelming grief of losing your very personality makes you try to forget about who you were before you were sick. But I also see the you who is still within you, though obscured by an inflamed brain.
2015 me, sickness is not your destiny.
Deep inside, you feel that somehow everything must turn out okay, and this sense is why you can keep going through depths of suffering you didn’t know any person was capable of experiencing. It is why you fantasize about ending everything multiple times per day and yet you always choose to stay because you know your mission in this world is unfinished. It is why you will peel yourself off the floor after depression has pinned you for half the day, and then somehow pull yourself together enough to turn something in for your homework. It is why you stay in school and won’t even back out of your demanding field of study—part of you knows that someday, you’ll be well enough to leave your mark in it.
2015 me, I want to assure you that you are indeed going to be okay.
I don’t have to tell you that recovery will take time and is not linear since you’re devastated right now about spending your spring break receiving your second dose of high-dose IVIG—devastated not at losing a college spring break, but at having lost yourself again. Devastated that you thought you were “better” a couple of months ago and instead have fallen into a deep relapse. You had really hoped that one round of IVIG would be enough like it is for some other people who have your illness, PANS, but here you are needing another round.
But I will tell you that you will discover that being “better” from an autoimmune disease that inflames your brain, warps your personality, and leaves you as a shell of yourself isn’t straightforward. It can’t be completely quantified by symptom scales or measured by when you are able to stop all psychotropic medications and therapy—because, spoiler alert, in five years your non-inflamed brain will still require a little extra help because of the physical and emotional trauma of your ordeal. Rather, being “better” is to regain your full self in the process of shedding all that obscures it.
2015 me, know that recovery is worth the fight.
Five years later, the payoff from the journey is indescribable, but it’s a little like the amazing view you can only get after a treacherous, sweaty path to climb a mountain. It is a sense of wonder in rediscovering the world through a healthy mind after years of sickness. It is to go from living in two dimensions in a blurry black and white, to all dimensions in a crystal-clear precision you never had before. Recovering from PANS is an experience that only those who profoundly lose and regain themselves in some way can ever hope to understand.
But this isn’t to say that you’re going to wake up one day and know that everything is completely fine and be completely healed. This week in which I’m writing this letter will be two years since a soul-sucking occurrence of what you simply call a typical “flare” right now. It’s been two years since I fully lost myself in this way, and I’ve been rebuilding myself ever since that round of IV steroids that will bring you back. So now I proudly call myself a survivor of this illness that could have made me nonexistent by claiming your life on so many occasions. Yet even after all this time, I’m not ready to proclaim the designation of “cured.”
Right now, you have severe symptom flares every two or three weeks that you can only somewhat control with steroids, and you have a barely tolerable baseline in between. Will you always have flares, you wonder?
I don’t know, but in 2020, if I catch a virus or get too close to anyone with Strep, I may have some PANS symptoms come back. It usually consists of a (non-suicidal) depressive episode for a week or two, bizarre anxieties, inappropriate crying, vivid nightmares, and maybe some tics—yet now these mini-flares dissipate with only the tincture of time once I fight off the infection. My worst days in 2020 are better than your best days in 2015. You might not believe this is possible, but I no longer live in fear waiting for the other shoe to drop like you do right now.
2015 me, the future is far brighter than you can imagine.
You’re going to graduate college with Highest Honors and then be offered a coveted assistantship at a top-notch grad school. You will go for a while, but you will be so in-tune with yourself and what you need that you will realize you must leave. Instead, you will come home, fall in with a start-up company, and have a satisfying job in your field that you love.
For now, I will spare you the details of the hardships you will also endure over the next five years—there will be plenty. There will be physical and mental consequences of PANS that no one anticipated, some of which are life-altering. Soon, you will also add Lyme disease to your list of problems. But don’t be afraid because you are strong enough to get through all of it. My life today isn’t what you might expect, but it’s an amazing one nonetheless.
So 2015 me, hang in there.
Don’t give up on who you are. Relish all the rays of joy that you will see along the way, especially in the dark times. Hold onto the hope that you can get better. Cling to the knowledge that you will help and inspire others by sharing your journey. Remember that I am here writing this letter in 2020 because of the strong, courageous person you are right now in 2015. You have all you need to get through whatever will come. So stand firm in your conviction that there is a higher power and perhaps a higher purpose in what you’ve been through, and that everything is going to be okay in the end.
Main photo: Titlutin / CC BY-SA (https://creativecommons.org/licenses/by-sa/4.0)