December 5, 2016. To most of you, this is just an ordinary date—many of you probably don’t remember what day of the week it was or what the weather was like. But for me, this is a day I can never forget. This is the day I stopped recognizing who I was.
This past February, I was diagnosed with a little-known autoimmune disorder known as PANS—Pediatric Acute-onset Neuropsychiatric Syndrome. PANS (and the associated PANDAS) is a disorder that usually occurs in young, pre-pubescent children after they are exposed to strep throat, mycoplasma pneumonia, mono, or a group of other diseases that then suddenly trigger an autoimmune response that causes their own body to begin attacking portions of their brain, which in turn triggers rapid onset of OCD, anxiety, depression, and a number of other neuropsychiatric symptoms. My autoimmune response came after I contracted mycoplasma pneumonia in late November 2016 at the age of 18, a conspicuously high, yet not-unheard-of, age for contracting the disorder. My diagnosis with PANS came after around three months of a confusing avalanche of worsening anxiety, depression, and OCD symptoms for which I had no explanation and little hope of escape.
I felt trapped inside of my own body—intense physical and emotional anxiety, as well as inescapable stretches of inexplicable despair, left me feeling powerless, inactive, helpless, and unable to do anything to combat my vulnerability and deterioration. I tried desperately to find explanations for my sorrows, my worries, and my obsessive patterns of thinking, and I tried desperately to keep up a front of normality, not only for others, but also for myself. I sought frantically to maintain my normal way of life as if nothing had changed, but the more I tried, the harder it became to resist these dark forces and the weaker and less motivated I became to try—to try to leave my room to eat, to try to tolerate a simple conversation, to try to smile, to try to feel as though any drop of happiness was not a false reality I duped myself into entertaining in order to avoid complete helplessness and insanity. Every day I watched myself gradually deteriorate into what felt like madness and insanity—I quickly became unable to distinguish between my own thoughts and the thoughts of an unwelcome mental force, between my own actions and the actions of some parasitical being within me. My enemy was inside of me and indistinguishable from myself, and it constantly sent me in circular loops searching for truth and for solace. I became powerless to stop the daily worsening of my mental state yet was forced to watch every detail of my gradual disintegration, and I became unmotivated to even seek to get better in any way.
And I write this letter today while still struggling. Since the diagnosis, I have been taking several supplements and prescription medications in an effort to reduce the inflammation to my brain, kill the remaining infection/decrease the autoimmune response, and treat the neuropsychiatric symptoms in the meantime. Having a name and identification for my illness and symptoms has certainly been helpful, but I am not yet free of the chains of this disease. Even though they may be to a lesser degree, I still experience many of the symptoms described earlier, and sometimes new symptoms appear that replace ones that have diminished. I am on an upward progression, but there are many instances when I question if I am truly getting better or if my symptoms are simply changing yet again; and though I’m improving, I have no way of knowing that I will not at any moment suddenly slide into deeper insanity, a fit of rage, a state of shock, or any other downward, debilitating spiral. I have little way of knowing anything, given the nature of this situation and of my mental state itself—in fact, the number of times I have said “I don’t know”—either to myself or to someone else—is too numerous to count, and this truly reflects how I have felt in the days and weeks since my illness began—utterly confused, dumbfounded, and uncertain.
But, there is one thing I am certain about—there is a God who loves me and has his act together, even when I don’t. Of course, there have certainly been times when I’ve seriously called this into question, and there have certainly been times when I have remembered this fact yet felt absolutely no amount of emotional comfort in its truth and in its message. Yet none of this makes it any less true; none of my feelings—however jacked-up and unreadable they may be—can change God’s love and his control of the situation.
And, in many instances, this has been the single thread that has kept me alive—the single thread that has maintained a semblance of sanity in my being. And though many times it has indeed felt like I was only hanging on by a single, tiny thread, I have seen that this thread, though small, is indestructible—the God of the universe is way bigger than whatever you may face, even though whatever you may face may be way bigger than you.
Christians often say that God doesn’t give us more than we can handle, but I have found this to be false—or at least, misworded. God allows us to face more than we can handle so that He can show us the reality of who we are and who He is. As much as I may like to play the “strong-willed victim,” I have not handled everything in the best way, and I certainly have been too weak on my own to endure many of the flames I have passed through. I have hurt some people along the way, and I have had my fair share of mistakes in this season. And though many would say I reacted as well as any other person would do, that is the point. I reacted as a human—a faulty and imperfect human.And as much as I may like to entertain that I might be something more, God has shown me how imperfect I am in light of His perfection and how weak I am in light of His strength.
And though it is hard to face and harder to experience, it is so freeing to be weak. It definitely still feels like absolute crap—there’s no arguing with that—but there’s something so freeing to realize, “You know what? Maybe I’m not strong enough for this. But maybe there’s a God out there who is strong enough for this, and maybe that God loves me even though I screw up, even though I can’t help but be mopey, and even though I can’t see the end of my suffering right now, and maybe that God wants to help me no matter how horrible my situation is and no matter how horrible my actions have been.” God’s power is made perfect in weakness. And I can’t say it doesn’t suck when He doesn’t take away your suffering even when you follow Him, but He is faithful, and He promises that though we may continue to suffer, and though it often truly seems like the suffering will never end, and though it seems like our situation is so much worse and must be an exception because of how bad it is, He promises that our suffering is for the best and that it is not in vain. As I heard a preacher say recently, “God might not take you out of it, but he will walk you through it.” Though I have often felt like I am walking through hell, Jesus is walking through hell with me.
So, to anyone out there who has felt anything similar (whether better or worse) to what I’ve felt for the past 5 months: There is a God out there who loves you. And He may not make you feel better right now, He may not suddenly rescue you from your suffering, and He may not grant you all the things you want, but He loves you, and He knows way more than we do, and His love, His Story, and His goodness are the only pieces of unchanging reality that we can truly hang on to at our darkest moments. And it doesn’t matter to Him how badly you’ve messed up or how rotten your life is—He still wants to be your Friend, your Savior, your Comfort—and He is never going to change His mind. Even if you’re uncertain, why not give Him a chance?
If you want to give Him a chance, if you want to talk, or if you are curious about anything in this letter at all, please let me know :).
Love, Jacob Buttry firstname.lastname@example.org
For more information about PANS/PANDAS, feel free to look at the following links: https://www.pandasppn.org/ppn-pans-diagnostic-guidelines/ http://www.panslife.com/-pans-symptoms/ http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/