Fiercely independent. Those are the words that my parents would probably use to describe me growing up. From early childhood activities where I would be the first to volunteer for any number of new experiences, to moving out of my parent’s house the very week I turned 18, fueled by an almost involuntary need to assert my independence. I don’t know how or why it became so important to me to prove that I could do things on my own but I could guess that it was probably less about possessing some admirable drive to be self-sufficient, and more about mere impatience. I had things to do, places to see, people to meet and I just couldn’t wait to start on the many things I longed to do.
So, I did things my way, and when I didn’t know how to do something I researched it; once taking apart an entire clothes dryer to replace the heating element, based solely on information I found on a how-to internet site. The pride of that accomplishment was worth the blood, sweat and tears I shed doing it on my own. Likewise, if I didn’t have the answer to something, I bluffed until I could figure it out; a tactic that, although not particularly helpful when being evaluated for a diagnosis, did come in useful when I returned to work after six months of medical leave, intent on easing my way back into an environment where I initially felt like an impostor. I took the phrase “fake it ‘til you make it” quite literally and channeled the confidence of my youth to bolster my reserve as an adult until I could stand on my own once again.
Before I became ill, it was nearly unfathomable to even consider there may be a point in my life when I couldn’t fend for myself, or that there would ever be a situation I wouldn’t be able to fix. Such is the blind, invincible arrogance of youth I suppose. Although, to be fair, the full impact and devastation inflicted by autoimmune encephalitis (AE) can be so extraordinary it’s hard for anyone to grasp the full magnitude of its influence — until you’re already trapped in its evil lair.
I’d like to focus for a moment on that segment of time in between “then” and “now.”
Going back to the hospital, just 4 years ago, to a room devoid of any sensory stimuli where a girl sits gazing vacantly – with a look on her face that doctor’s notes will describe as a “deer in headlights.” Although her features would appear recognizable to family and friends, her personality and mannerisms would not.
This girl cannot walk more than 50 feet without assistance, and most days relies on a wheelchair or walker to get around. The repetition of her supervised excursions around the length of the ward does not bother her because she doesn’t recall the times before – whether a week, a day or a moment prior. She is unable to control the way her moods swing rapidly from über-manic highs to sorrowful, defeated lows in a matter of mere minutes. She’s no longer in control over her own body, limbs flailing about at the whim of muscle tics and spasms, tremors frequently wracking her body from head to toe. She has lost control of her inhibitions and bodily functions. The words that come inadvertently tumbling out of her mouth are of their own volition, and they erupt unfiltered, uncensored, and without regard to manners, compassion, grace or shame. Her thoughts are not her own, racing wildly from hallucination to perseverations to feverish made-up stories and conspiracy plots. She can no longer read or write, or even sleep, although she is desperate to escape the nightmare that consumes her every waking hour. And, even worse than all of these extreme losses in functionality, the knife that twists deepest when her back is turned, is the utter lack of power she holds over the fate of her situation. She is trapped, stripped of her power, and unable to “fix” herself.
I think it’s easier for me to talk about “her” as if she were someone else because she is not a person I recognize, and I struggle to reconcile that version of myself with the fiercely independent, commanding presence I had always thought I was and who I continue to strive to become once again.
But, I’ve learned that comparing the person you were with the person you are can be your own version of kryptonite – making it all too easy to feel defeated, or even like the villain in your own tale. Adding insult to injury, the AE package comes complete with visual, sensational and auditory delusions. My own delusions ranged daily, from unreliable memories that cast those around me as liars or cheaters and myself as the only one who knew the truth; to believing I existed in fantasy or sci-fi type worlds – as a vampire, a future seer, and even, at one point, Oprah. I initially concluded that my mind must be re-purposing movies and TV I had watched, books I had read, or songs I’d heard simply for an entertaining distraction. It seemed to make sense that a part of me would want to create a safe place to escape and re-fortify after the more significant blows. I have since heard from other survivors who share similar experiences – hallucinations that consisted of stopping traffic, lifting cars, or conversing with angels, demons and other entities.
It wasn’t until I had the chance to swap stories with Will McDow who, along with his wife, Leslie, founded the Autoimmune Encephalitis Alliance, that I began to formulate a new perspective on these hallucinations and delusions. During our conversation, Will spoke lovingly of his daughter, Florence, who also suffered from a rare form of AE from the age of two to six. He told of her days in the hospital ward with an undertone of both pain and pride, as he detailed numerous tests and treatments, and the fighting spirit of a brave young girl– never leaving her room without the protection of her “superhero” cape affixed to her back.
Sadly, Florence did not survive her battle, but I believe her tenacity and strength has endured through Will and Leslie and their continued efforts to support research, education and awareness through their non-profit organization.
My heart breaks for this young child that I never knew, not only because I empathize with her battle, but because I recognize her spirit. It’s the same warrior mindset I’ve found in countless others who have fought battles with this and other dramatically life-altering diseases.
I began to think about the stories of others and how so many of us had subconsciously developed these alternative realities that provided our psyches with some sort of sixth sense, extra strength or super power; and I have come to realize that we are wired to overcome, to fight for survival. I believe this is a deliberate call to arms by our bodies when all other defenses have failed – in this way we are able to find a semblance of control in a world that has become untethered; a modicum of power when we feel utterly lost and helpless.
As adults, we may unknowingly don a disguise to live out these wishful scenarios — as vampires or zombies, who must not feel pain; as celebrities or athletes, who seem to have every resource at their fingertips (just try and name someone more powerful that Oprah); or as deities, who can create their own destiny. Our child counterparts, however, do not hide behind the mask and instead go unabashedly straight to the source – as heroes, with superhuman strength and bravado.
Young or old, somehow, these lies we tell ourselves when we’re at our lowest, often become truths when we rise from the ashes, the fire still burning within, and exuding a tenacity to persist that comes only when you realize that in order to survive on your own terms, you must not wait to be saved, but instead, become your own superhero. Overcoming these insurmountable feats, whether real or perceived, gives us back a part of ourselves that was lost, and subsequently reinvigorates one of the greatest real life powers we possess: hope.