As I approach final exams this week, I’ve been thinking back to three years ago, when my life changed forever, on December 17th, 2012.
At the time, I was seventeen and in my senior year of high school. I was excelling academically, and people told me I’d have a promising career. I was popular with lots of friends. I felt such a sense of freedom in being an “adult” by learning to drive. I thought the possibilities for my future were endless.
But in an afternoon, my whole world collapsed.
One Saturday at the end of November, out of nowhere, I became convinced I’d committed an unforgivable sin. Suddenly, blasphemous intrusive thoughts constantly filled my mind, and I was consumed with trying to “cancel them out” with silent mental rituals. If I didn’t, I might go to Hell. Overnight, my OCD transformed from mild to an extreme case—though I was still undiagnosed. Little did I know, it was the beginning of a three-year PANS exacerbation.
After that day, my life went from being wonderful to being a living Hell.
Sometimes, I realized how irrational my obsessions were. I would know I was a Christian, and I found it unbelievable to think that a loving God would throw me into Hell over some upsetting thoughts. Other times, I spent every waking moment trying to stop the intrusive thoughts, in constant terror that I was damned and beyond hope.
Sadly, it wasn’t the first time I’d endured this torment. Six years earlier, my OCD had abruptly started in the same way, and since then, it had come and gone. From the time I was eleven, blasphemous intrusive thoughts happened throughout each day, but I eventually learned to pay them no attention. I never told anyone. But suddenly, in 2012, the thoughts took over my life again and couldn’t be ignored, and I felt like they would throw me off the face of the earth at any moment.
Everything came to a head the weekend before my final exams. I couldn’t study, because the thoughts were constant, as were my futile attempts to stop or cancel them. I couldn’t write anything without checking and rechecking to be sure something didn’t have a blasphemous double-meaning. I couldn’t say certain words at all (like “bad” or “evil”), because I feared they would cause another blasphemous thought. It felt like there was a knife lodged into my conscience, tearing down to the core of who I was, and with every thought, it only cut deeper.
On December 17th, after three weeks of mental and spiritual agony, I’d reached the end of my rope. I saw I had to do something besides keep trying to cancel the thoughts, because the torture was only worsening. I stepped back and began to wonder if maybe, just maybe, I had a mental disorder causing it all. Maybe I wasn’t eternally doomed. Maybe none of it was my fault. And then I remembered a Reader’s Digest article from that March which mentioned OCD involved repetitive, unwanted thoughts.
After a Google search and two minutes on the OCD Wikipedia page, I knew.
It’s impossible to describe the hodgepodge of emotions in that moment on December 17th… I was so relieved to discover that my misery had a name—and a hope of ending. I was comforted to realize I wasn’t alone. I was shocked to find out I’d had a serious mental disorder for all those years. I was terrified, because I knew without a doubt that I finally had to speak up and get help. But most of all, I was hopeful, because I knew life could get better.
I wish I could say that everything got easier after that day, but because my family couldn’t convince local doctors to treat me for PANS (which we began to suspect as the underlying cause), December 17th was only the beginning of my fight against various debilitating neurological symptoms that would soon come.
Three years later, it’s been an incredibly long road to get to the freedom I have now (and I’m still fighting in some ways). I’ve endured months of Exposure-Response Prevention therapy, two IVIG’s, tonsillectomy, lots of antibiotics and other medicines, and drastic lifestyle changes, but PANS no longer runs my life—nor does OCD.
As December 17th comes and goes this week, I can’t help but be grateful for the day, because my discovery and my parent’s research on OCD that followed is what ultimately led to my PANS diagnosis—and eventual recovery.
But more so, December 17th now makes me question… What about all the other people who have OCD but are too scared and confused to get help? How many more cases of PANS will go undiagnosed for eight years because people conceal their OCD so well? My situation was not unique, so I believe more awareness for OCD and PANS among parents, psychologists, doctors, and even children, will bring December 17th faster for more people.
Hi Dear Dreaming Panda! Not yet reading every part of this update but already IT IS FANTASTIC !!!! God is soooo helping me through you…you and your gifted writing are really meaning more to me than I can measure. Hope to elaborate on that and your blog and more quite soon.
Hello from Joy too. Love, Jill (Joy tried to start a letter to you last week…but it’s not getting done yet! But know that your letter then, as it often does, rely you need her!!!)
I know some of your days/nights can get very challenging and that you are writing about your mountain climb just as you are climbing it…are not yet looking back at EVERYTHING you’ve conquered. But you’ve conquered a TON of vertical footage…and you WILL get that “Over-View!” (That sounds good, doesn’t it?)
I have realized, with this newbie Diagnosis, that maybe drs know even less about what P looks like at THIS end of things. We could (all) really use a map/diagram like the ones that first told us WHAT’S REALLY WRONG (you-Google, 12/17/12…us, a response to an article from Oprah…the second section and last page of second set of about 350 comments. Clearly I was digging that overnight. January 2013–and I can probably find the day too.)
You’ve really done all the right stuff too. I had used up so many funds on all of the WRONG diagnoses (not even to mention the suffering and loss quotients for Joy…and secondarily me/us…) and have had little room (with P around) to make any new ones-and my very helpful Mom has still wanted to do the very conservative rt relating to money, which seems to cost far more in every way than just getting after it. I pray she will keep helping as I try to get some income generating efforts going (and very old tax returns returned and so on). As I’m sure you know-but hardly Nyone else other than Joy/me/you–this is an all-out survival match…and MUCH is requisitely back-burnered, I’ve said that–for much of this time–even if someone was on the sidewalk handing out money, we’d not have been able to get to it/receive it. I imagine you know what I mean…have seen such days/nights/blurs of time.
We have had some bumps lately but seem to be mostly going upward. I pray we get patience, favor and all the rest while we scale out own peak here. Even the most generous folks seem to get incredulous…as if feeling that (re patience w us, hearing about “issues,” etc….”time’s up” in their estimation). I don’t want to over promise improvements to ppl, but I do get optimistic (thank you GOD for that miracle!)…and then stunned (along w the others) that the road seemingly lengthened around a new or repeating bend. Have you heard that the 40-yr trek in the Wilderness if done directly would’ve been a pretty short trip for the Israelites? (7 wks? Days? Yrs?).
One day our paths will look just as unnecessarily circuitous…and I’m sad that — for you kids involved — it’s not about delayed rent/other payments or overdue homework. It’s your delayed/overdue/fee-imposing CHILDHOODS!
But…God promises to use this stuff…like mulch in a glorious, peaceful mountain forest.
You (& Joy too) will be RICH in so many ways (it’s already starting, but even more ahead…) once you have even more room to use/enjoy/SEE what’s in you after all of this “character-building” (weak laugh, heh-heh)…and what’s been ready and waiting in you from the start! It will (and is already starting to be) pretty amazing…here w Joy and (as seen on blog) with you. It’s not yet enough to post a flag of victory…but it’s “critically better!” (And sometimes still far too bad/difficult!). But consider your health/knowledge state of 12/16/12…or our own state prior to 01/??/13. Thank GOD those timelines of meandering were finally rocked by each of our P news milestones…the MIRACLES!!!
Rocking on…we all are.. Thanks again for the gifts of your growing story. God bless you! J
ViaApple