I woke in terror. Actually, at that point I was always waking in terror, but this day was worse because I was anticipating it being extra challenging. I would have to accept an impossible mission. My orders? Catch a red-eye from Ted Stevens Anchorage International Airport to Chicago O’Hare, change planes, and then fly to Cleveland, Ohio. As the kid of a former travel executive, I had flown hundreds of times. Why was this mission going to be any different? Well, this time I would have to pull it off while suffering from life-threatening akathisia.
But first, what is akathisia? Its current clinical definition cites it as an extrapyramidal symptom (EPS) or movement disorder. Other EPS symptoms include tardive dyskinesia, dystonia, parkinsonism, bradykinesia and tremor. Akathisia is characterized by an intense, internal sensation of restlessness and agitation that spurs the sufferer to be in constant motion. It is a grossly underdiagnosed and understudied neuropsychiatric symptom, most often resulting from exposure to and withdrawal from psychiatric drugs.
For perspective, rewind 25 years. I was working at the University of Miami’s School of Psychiatry, running a hospital-based program for children and adolescents deemed to be severely emotionally disturbed. Every week, I would take part in a supervisory group at their teaching hospital, attend psychiatric grand rounds, and sit in with the head of the department for group supervision with psychiatric fellows, psychology residents, social workers, and nurses.
Additionally, I taught multiple semesters of psychopathology to master’s-level students, provided clinical supervision to over 30 MSW-level clinicians, presented papers at national and international conferences, and maintained a successful private therapy practice. My point is, I worked with some very competent, compassionate doctors in a variety of settings, taught students how to diagnose disorders, and worked face-to-face with hundreds of clients over the years. In all that time, no one ever mentioned to be on the lookout for akathisia or even once uttered the word.
My personal experience with akathisia had started the year prior, following an ill-fated decision to trust a negligent medical detox center with my health. The “treatment” there consisted of an abrupt discontinuation of 1.25 mg of daily Klonopin, the equivalent of 25mg of Valium. I would discover later – too late – the benzodiazepine guidelines recommend that I should have been advised to taper slowly over months or years, depending on tolerability, on an outpatient basis.
I was never addicted to Klonopin. I had only become dependent from as-prescribed use to help me sleep. Once home after the “detox,” the gates of Hell began to open. The pacing I had experienced before the detox only worsened. Instead of a few hours of akathisia a day, it morphed into a daily marathon of 10 to 14 hours of pacing — often starting at 4:30 a.m. and stretching into the evening.
This created a level of restlessness and agitation I had previously never experienced. Agitated and anxious people often report feeling “plugged into a socket.” Well, this felt more like being plugged into a nuclear power plant. My nervous system felt like it had been super-charged with electricity and then doused in flames as the glutamate storms surged through my being. I paced in circles in a 10 x 10 room, barefoot because socks felt restrictive, my calves aching and feet covered in open, bloody sores. Every moment marked a white-knuckle battle to resist suicide – the urge to seek the ultimate, sweet release from my suffering.
A good analogy for this daily torment comes from Greek mythology and the legend of Prometheus. For the theft of fire, Prometheus was sentenced by Zeus to eternal torture. He was chained to a rock, and every day an eagle, sent by Zeus, would eat Prometheus’ liver. The liver would grow back each day, endlessly repeating the cycle. Fortunately for Prometheus, the hero Heracles eventually rescued him. That day as I headed to the airport, I secretly prayed that Heracles was piloting the plane and would be taking me away from this agony and towards somewhere better.
I had to get to Cleveland for the social support I needed to survive. I had lost almost everyone and everything at that point but had found one great friend who’d offered to help. But here was the rub! Is there a more cramped space on earth where the social mores are more strictly enforced than on an airplane? In the post 9-11 world, there’s really no way for fellow-travelers and flight attendants to “ignore the frantic pacing guy” over there. I also feared, if the plane had to make an emergency landing because of me, becoming “Mr. February” in the calendar of men most likely to end up hospitalized in a Canadian psych ward. The voyage, I realized, was going to be a constant push-pull between giving in to the urge to freak out and the death grip I’d need to maintain on my body and psyche in order not to scare the other passengers.
“Oh my God, oh my God, oh my God,” I thought as I woke panicked that morning. I wondered how on earth was I going to pull this off. Fortunately, with the time difference, my team of support people spread around the country were “at the ready” to talk me through this. I had already canceled two weeks’ worth of flights prior out of sheer terror. At that point, even showering was difficult — how was I going to act normal for a whole day? Somehow, I managed to get through check-in, screening and boarding without incident, giving me a false sense of optimism.
I got to my seat, fastened my seatbelt, and started chanting like the Little Engine That Could, “I think I can, I think I can, I think I can.” Then it hit — bam — “Holy hell, I am trapped in this tube for the next eight hours, and more importantly, strapped to this seat, locked into somehow manifesting normal behavior.” I quickly realized that any weird movement or utterance could draw the ire of another passenger or the flight crew. The immediate flush of increased agitation upon these realizations was immeasurable — it could have heated a small home throughout the winter, it was that combustible. This is the constant fulcrum in akathisia: the tenuous balance between the inner raging agitation and managing its outer expression.
The passenger door closed. I unhooked my seat belt and ran to the back of the plane. I blurted to a flight attendant, “Stewardess, stewardess, I need to get off of the plane immediately.” While she called the cockpit, I was overcome with confusion, terror, and indecision. The song, “Should I Stay or Should I Go” by The Clash could have been the soundtrack of this conundrum. “How can I do this, I have to do this, I can’t do this, I must do this.” I had become Me, Myself and Irene.
I return to my seat and began squirming like a fish out of water as I dug my nails in my arm so deep I drew blood, seeking as best I could to contain the agitation. When that didn’t help, I pulled out my computer for distraction. “OK, Chris, once in the air, you will be reconnected to your iatrogenic injury umbilical cord of people who support you.” No internet signal.
“Excuse me, miss, how do I get the inflight internet?” I asked a flight attendant.
“Oh, this plane isn’t retrofitted for WIFI,” she replied.
Immediate terror ensued, and I air-launched out of my seat, untethered to my network of reason and comfort – back to the rear of the plane to commence frantic pacing.
Once in the back galley, I further tried to explain my “condition” to the flight attendants. As sufferers of akathisia have realized, even most psychiatrists and neurologists know little about the condition, so expecting a layman to get it right off the bat would have been a reach. Fortunately, they were wonderfully compassionate, if not confused by this ever-moving target filling their work area with toxic frantic movement and pressured speech. At one point one of them looked at me with sincere worry and uttered, “Clearly your meds are not working.”
I spent the entire flight pacing while constantly looking at the exit door, wondering if it might be better to just rip it open and jump. Nope, that would have broken the Dexter code: No innocents get injured. Finally, the pilot turned the “seatbelts on” light on to mark the beginning of our descent. While this should have been a relief, instead it only increased the panic. I’d need to be belted in for the next 20 minutes, plus 10 minutes of taxiing to the gate. I returned to my seat and buckled my seat belt, once again facing the challenge of remaining seated and quiet while feeling like I was being tasered.
Finally, we arrived at the gate. As I deboarded the plane, the last thing the flight attendants said to me was, “We can’t be sure the next set will be this understanding and cool.” Great.
Exiting the plane provided a quick sense of relief as I was free again in a more open environment. The relief, however, was short-lived. Six a.m. at O’Hare Airport on a busy day is quite the overstimulation, even for the non-CNS challenged. One more flight to go.
Next-level insanity ensued. The lights, the sounds, the people — it all overloaded me once again. I considered running up to one of the numerous policemen and having myself committed, a momentary lapse of reason in the desperate search for safety. This is how desperate akathisia makes people – so desperate that they would even consider going back to one of the very institutions that had injured them.
Then the flight cancellations began: 8:10, 9:10, 10:10, 11:10 — frantic texting with multiple friends checking bus and train schedules to Cleveland ensued. The mere thought of getting back on a plane only increased the fear and agitation. Pacing back and forth in the terminal, I sped past Gate 14, Gate 15, Gate 16, and Gate 17, then Gate 16, Gate 15, Gate 14 and back again… and again. I somehow managed not to draw attention to myself. Luckily, I probably only appeared to be a maniac racing to catch his flight. If only people knew how I’d felt inside!
Unless you have experienced akathisia firsthand, you can’t possibly realize the vulnerability of having it in public. You become the village idiot, laughed at or feared by most. Because of the pacing and physical distress, you emit an unnatural energy. You become a human repellant because your energy is so frantic. This is one of the main reasons people with akathisia often lose all social support.
Wanting to stack the odds in my favor on the final leg of my journey, I upgraded my seat to first class on the flight to Cleveland. I chose the first-row aisle seat because it’s the least cramped on the plane. As I boarded the 12:10 flight, I turned around and informed my fellow passengers that I had a neurological injury and was flying to the Cleveland Clinic for treatment – a little white lie just to preemptively cover me for a repeat performance of pacing. I didn’t want anyone to misinterpret my movement for an attempted breach of the cockpit.
We landed in Cleveland and I made it off the plane to safety. My luggage was waiting for me at the front-door baggage check: It had arrived about four flights ahead due to my cancellations and flight changes.
I found this to be a metaphor for my present-day healing from akathisia: Sometimes our luggage gets there before we do, and by just hanging in there, even if it’s for a later flight, we create and maintain the hope that a better future awaits.
