Ten years ago today I woke up with a half-paralyzed face.
I woke up in the evening of January 11th, 2002, moved immediately to the bathroom having seen that I had slept beyond dusk, knowing that my next workday was soon ahead with little time before I had to depart. I turned the water on as hot as I always do, which is always somewhere between scalding and torture, despising the sadism of cold water running over my skin. Having emptied myself at the commode, I slid the glass doors leading to the tub open once more and stepped inside its confines. The bathroom had become a milky atmosphere of steam.
Testing the nozzle’s current with my hand, hot enough, I stepped underneath the flow and quickly perked up. I began to pour soap into my hands and lathered up my scalp. No adjustments to temperature. I scrubbed, pulling some of the soap down with my palms onto my face, and discovered that something was missing. My eye started to burn – I had just filled it up with soap – and now scrambled to flush it out with water too hot for one’s eye. I began to fumble and decided to step out of the tub and use the sink.
The mirror was fogged, and as I continued to flinch from the sting, soap dripping down my body, I toweled my way through to a reflection and noticed a difference. I generally sleep with my face buried into a pillow, so it makes sense I didn’t notice until then, but my right eyelid would not move. When I attempted to close it, instead, my eye rolled upwards into its socket.
Of course, the first thing I did was play with the lid, try to cajole its closure, massage its envelope-quality back to life. I now realized the problem was larger. As I tried to exclaim “what the fuck,” I noticed my mouth was contorted, moving as if it had been trussed from the inside. Rubbing my face did no help and my heart became erratic as I realized I had no feeling on the right side of my skull. Nose, eyes, ears – gone. Feeling and movement ceased.
The next few months of my life were quite awful. I had been ricocheted between neurologists and infectious disease specialists, MRId and CAT-scanned. By June most of the movement and feeling came back, I could smile again, and I began to move on having received nothing but assurances from doctors that it was an anomaly (all tests came back clean) and likely to never reoccur.
January 11th, 2003 came and went, uneventful, but full of relived anxiety.
On January 17th, 2003, I woke up to go to work, and discovered the left side of my skull was paralyzed. I found out faster this time, having since created a nervous ritual of waking and immediately checking my state in the mirror before I could begin my day. The pain of that moment was catastrophic. I cannot write about what I felt that day, about viewing yourself in a mirror wearing a broken mask that differed from the one you wore for two decades, again, without shivering. More awful months followed, yielding more confused doctors, more clean tests, and more personal decomposure. The constitutional damage far surpassed the physical loss.
Ten years after the first attack and I never received any real answers. The ultimate diagnosis was bilateral idiopathic seventh facial nerve palsy, also called Bell’s Palsy, an event of nerve damage that can be caused by virus, physiological breakdown, or plain old chance. I was told I had an overall nerve recovery rate of 95% from the first incident, and 65% from the second. The missing pieces may not be noticeable to the average stranger, but I see the loss everyday. I “feel” it, too, since the nerve signals my brain sends for “smile” & “blink” travel to other parts of my skull – an effect of the human body’s unreliable and inefficient effort to re-grow damaged nerve channels.
What are the chances? While 40000 people annually experience facial nerve palsy, only 3600 of those will experience a re-occurrence – or .0011726134182% of the population.
Two weeks ago, as I began to write these memories and recall the journey since, I began to reflect on how I had changed since my loss. I learned to adapt and cope, and ritual became an integral part of my life as a result, just as it did in the first year after that tortured morning. However, it wasn’t until the first hour of this day had passed, meeting my friend insomnia once more (we have an annual reunion every dawning of this day,) that I discovered the sour irony of this celebration. When I grudgingly rolled out of bed to do something other than continue to stare blankly at the ceiling, I saw this story in my Twitter feed:
and I realized that the pain of my experience, while great and personal, was insignificant to the other tragedy that has been perpetuating ever since. It was on January 11, 2002 that the Guantanamo Bay Detention Center was opened.
Ironically, I had also seen an article on Boing Boing earlier in the day about a humanitarian who had been erroneously held at Guantanamo for 8 years, without charge, and avoided reading it to circumvent what I surmised would be another depressing story of American hysteria. The article, My Guantánamo Nightmare, by Lakhdar Boumediene, is an important read to remind us that pain exists, chance is often perverse, the importance of being that which we believe in is our greatest weapon, and faith in that will be our sustenance.
While I never found clarity about why this happened to me, and I likely never will, the unfortunate synchronicity of events reminds me of how often traumatic experiences occur each day – many horrific ones out of sight, far away from our own moments. It is terrible to ask “Why?” to a deaf universe when fate deals us a solid blow, and receive nary a whisper back. But, it is more disheartening to know that our governments punish, undeservedly, innocent collateral victims in the continued hysteria of manufactured terror. It is, after all, the victim’s hysterical pain after a sudden traumatic event that persists longer than the experience itself. We can no longer allow our governments to manipulate this hysteria, just as we must convince ourselves to move beyond pain, lest we use it to incarcerate ourselves.