The New Me… Maskless

Getting better is like taking off a mask...
Recovering from PANS is like taking off a mask…

A few days ago, as I strapped on my backpack and headed out the door for the first day of the school year, I couldn’t help but be excited to start my first semester as a healthy person. How wonderful it would be to do college without debilitating neurological symptoms!

As I’ve said in previous posts, I never know how ill and out-of-it I’ve been until I get better. While I’ve always known when there was something “off” about me, I’ve not always been aware of the severity of it at the time—by definition, this is partly what made me “out-of-it.” The more I’ve recovered, the more of myself I’ve realized I’d lost to PANS.

Few circumstances have revealed my losses and subsequent recovery more than going back to school this week because of the stark contrast between this year and last year. It’s been made clear to me by how much easier everything is (even though I’m swamped with homework) and by others’ reactions to the new me—or more accurately, to the real me that many of my friends have never known.

Last fall, it was terrible going back to class, sitting at my desk with obvious and constant muscle jerks that I’d developed overnight during the summer. And I knew everyone could still see a large bruise on my arm from a failed IV stick, along with a puffy moon face and the worst acne imaginable from high-dose Prednisone. I was sure that my classmates who’d seen me before must’ve been wondering what happened to me over the summer, but I was too ashamed and traumatized to explain.

Perhaps the worst part about going back to school last year was that anyone I’d known well from Freshman year could tell that I was hardly even a shadow of myself, not because I was pale, moon-faced, and too thin, but because my personality had evaporated.  The brightness in my eyes was gone. I didn’t look at people—I looked “through” them. Conversations washed over me, because I couldn’t understand or concentrate on what was being said. My friends later admitted that I seemed distressed and not completely there.

During that time, I once had a nightmare in which someone forced me to wear a terrible mask everyday, but that’s exactly how my life felt—I had been forced to wear terrible symptoms all the time that obscured who I truly was.

But now, that mask has fallen off, and I’m not ashamed of who I appear to be.

So this year, as I walked (yes, I walk just fine now) through the halls between classes and later met with my professors, I got all sorts of wonderful and interesting reactions to the face everyone can now see without the mask:

“You seem a lot calmer than last semester.”

“You seem to to be concentrating well.”

“You look so healthy!”

“You look great!”

“Have you been running a lot? I can tell you have!” (This person doesn’t know about my struggles, so running was how she accounted for the change.)

While it’s disturbing to realize how far gone I once was and to know that my illness may have been more obvious than I thought, I’m glad that everyone sees the real me now and not that wretched mask. I’m so ready to dare hope I’ve taken it off for good…

5 thoughts on “The New Me… Maskless

  1. So glad the school year is off to such a great start for you, and I’m confident it will continue! I find it interesting that you say you didn’t realize how bad off you were until you improved. I remember my son was a walking zombie when he was over-medicated. After he was weaned off all the meds we noticed a huge improvement in how he felt and acted, but he said he didn’t feel “that much different.” I think he was in such a fog he didn’t realize how bad off he was. Maybe that’s a good thing! In any case, I’m so happy for you!

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    1. Thanks, Janet! Interesting that your son didn’t realize how bad he was feeling when over-medicated. Maybe sometimes you can be in so much of a fog that you never realize you were out-of-it. The brain is a strange and fascinating thing…

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