During my first few months of treatment, whenever anyone asked me what percent of myself I felt I was, I usually said 80 or 90%. Although I believed this was accurate, I was grossly overestimating my level of wellness, because I’d forgotten what life was like at 100%. As I’ve said before, I’ve never realized how ill I’ve been until I’ve gotten better.
The nature of my illness, since it affected my brain, altered my ability to perceive if I was really myself or not. People think I must have been terrified on the day I essentially lost my mind in 2014, but by definition, I couldn’t fully understand how far gone I was. I grasped that being suicidal, raging, and in a state of confusion wasn’t like me, but intellectually knowing I wasn’t myself is entirely different from experiencing and remembering who I really was. It was only as I began to get better that I started to comprehend how far from 100% I had been.
Today, I don’t say I’m 80%, I don’t say I’m 90%, and I certainly don’t say I’m 100%. I simply say that I’m well.
I’ve realized that when you don’t remember who you were as “100% yourself,” it’s impossible to give an accurate percentage. The sense of self is impalpable and can’t be constrained to measures or percentages.
As my brain heals more and more, I’ve discovered that attempting to define my “self” in numbers, as it relates to my symptoms, is like picking up sand with a sieve. Just as I think I’ve remembered what 100% of myself means, I recover from symptoms I didn’t completely know I had. Then, all my numbers and estimations become meaningless, my perception of how much like my “self” I’ve been shifts, and I have to pick up the sand all over again.
How will I ever know if I’ve truly returned to my “self”? On the other hand, who’s to say that who I am now isn’t who I was always supposed to be? People are constantly learning and growing and changing, so perhaps one’s self is not only outer, observable behaviors and traits, but an inner, subjective sense. Who’s to say that I’m not more like myself now than ever before?
I believe that in the case of an illness that so fundamentally alters your experience of the world and your perception of who you are, recovery means being able to live the life you want without your illness stopping you or negatively affecting the way you live. By this metric, though I still have mild symptoms, I’m 100% because I’m doing everything I wish to be doing, with little interference from my disease.
However, I’ve come to accept that I can never be 100% of my old self again, because surviving PANS changed who I am. I’ve gotten stronger. I’ve matured. I’ve learned to not take my health or my life for granted. I’ve become more compassionate. I’ve even discovered a love for writing as a result of it.
Sometimes, I still mourn for who I used to be, and I grieve the time I lost. But slowly, I’m learning to embrace this new person born from many tears, treatments, and trials, and I’ve grown to see her not as a victim, but as a survivor. A warrior is who I’ve become. In this sense, I’m not just 100%—I’m beyond 100%, because I’ve emerged stronger than ever before.
100% isn’t always about a lack of symptoms—it’s about being able to live again and being completely comfortable with the inner self that you perceive you are.