The sky was darkening from the typical orange-pink of a south Florida sunset into a dull blue-gray as my car pulled up to the sidewalk – a prematurely hot late April evening in a state known for its disrespect of seasonal norms. It was almost time to set up, and the opening band was finishing the last of their offerings – a jazzy rock piece that showcased their private school chops perfectly. “Damn! I really wanted to see them,” I said under my breath. As one of the “old guard” of this particular original music scene, I had made it a point over the previous years to check out each new band as they took up root, and if I enjoyed their work, make sure they were placed on shows with my band, Love in War. It was hard enough to get a foothold as an original musician in a tourist town. Might as well stick together.
This time, however, I had not made it to the venue in time. I was suffering from what I considered the worst, longest headache in the history of the world, one that had lasted over a week and had gotten worse each day that it persisted. My eyes felt like they were trying to break free from my skull, and my vision was blurry. After the previous band had broken down, my guys set about getting all of our equipment in place, while I set about fishing in my purse for an Adderall (which I took for narcolepsy, but also doubled as a pep-inducer for late-night performances and afterparties) and some kind of pain reliever (I settled on a Tramadol, which wasn’t good enough, but was better than nothing). I snuck off to a nearby hotel – the Indigo – which had a small, swanky bar, scored myself a Magic Hat, and ingested my stay-alive cocktail.
I felt awful – any number of smarter people would have called the show off weeks ago. But I had assumed I would get better weeks ago. I hadn’t assumed the headache would go from annoyance to a persistent feeling of being hit in the back of the head with a hammer followed by electric shocks that snaked up over my skull and into my eyes. Plus, I was known as an exceptionally reliable performer – I always showed up, and always put on a great show – and this was the first in a packed tour schedule that would span a few weeks. I had once done two back-to-back shows with laryngitis, for Christ’s sake. I could make it through a stupid headache.
I finished my beer and walked out on stage, stepping carefully over the exposed cables. I took my position in front of my Roland A90, turned and nodded to my husband Adam, who triggered Love in War’s electronic tracks from behind his clear Plexiglass drum kit. As the first notes of a distorted string pad rose from the PA speakers, I knew there was a problem – I didn’t remember what song this was. I drew an immediate blank, a vast sea of nothing that seemed to have no land in sight. I stayed calm, sure that I would pick it up by the time my vocals were to start – after 2 years of this, it was muscle memory, after all. A piece of the vocal melody floated into my head with no words attached. I began to get frustrated, but kept my cool externally. This had never happened before – not like this. What was my problem? I missed my cue. Damn it.
This continued through six songs – songs that I had performed several times a week for two years straight all over the Southeastern United States, songs that I had written myself. I missed cues, I forgot lyrics, I didn’t remember the titles to any of the material. As each piece flew by, like a taxi passing by at top speed as I tried in vain to get the driver’s attention – please stop, let me on, I am dying out here – I became less angry and more scared. What is going on with me? I turned to Adam before the next song with dread in my eyes, leaned in and said “shut it down. I can’t do it. Something’s wrong.” His brow furrowed with concern. He knew I was not doing well, but canceling a show, especially mid-performance, was completely out of character. I mumbled a short apology into the microphone, and left the stage. What was that? That wasn’t me. Something is definitely not right.
Adam and I first met in a way that is becoming a modern cliché and fodder for many a reality TV program – we began speaking over the internet. But rather than being two forlorn members of the online lonely hearts club who found each other with a little help from technology, we met completely by accident. In fact, we came very close to never speaking to each other at all.
It was August, and the sweltering state-sized sauna commonly referred to as “Florida” made leaving the house and venturing into the world an unattractive prospect, especially for me, a woman whose only gift from her Irish ancestors was the magical ability to turn into a lobster after twenty minutes of sun exposure. The tired old air conditioner that made my ground-floor condo livable chugged along as I half-watched rerun episodes of “Cold Case Files” while searching for a friend of a friend’s profile on MySpace, all the while trying not to melt into a puddle of human humidity.
I scrolled through the endless names and photos – mostly long-haired metal-heads and club kids with neon colored hair extensions, many of them only known to me as a configuration of pixels who followed my music page or had one of their own. The person I was searching for was a musician, one who was suggested to me as a potential collaborator by a mutual friend who had played guitar on a couple of my demos: “He’s a great guy – I think you guys would work really well together.” But I had forgotten his screen name, and tracking down a specific person on MySpace was like finding Waldo – the witty handles people used online blended together, the rampant abuses of Photoshop obscured defining features.
Nope. Scroll. Nope. Scroll. Not you, either. Scroll. Ugh.
I considered giving up, taking a second shower to rinse off the sweat that was negating the first one I had taken, when a photo caught my eye. A slim, almost shockingly normal looking guy sat at a dinner table, head turned toward the camera. His hair was cut in a strategically messy but respectable European style, the near-blackness of it setting off his navy blue eyes. A half-smile played on his lips – a smile of quiet amusement. Next to the table stood a baby elephant.
Who is this guy? What’s with the Elephant? I gave up my search and focused on this new curiosity. I read his bio quickly – he was Australian, a financial controller for an American-owned company’s Asia Pacific offices, a musician. He explained his interest in astronomy and motor racing (complete with pictures of him at the track in his modified WRX) and discussed his love of travel (the elephant was in Thailand, a country that he often visited on business). He had released an electronica album in the late nineties, but had started out as a drummer in his youth. As I read along, I couldn’t help thinking: Too bad we live on the other side of the world from each other! He seems like the kind of guy who has some great stories. At the end of my patience with my unfruitful search, I decided to close down my laptop and forage for some food in my fridge.
As the day wore on, and I made plans to meet some friends for drinks that evening, my thoughts kept returning to that profile, and the racecar driving, musician-accountant behind it. I was keenly familiar with being a walking contradiction – I was a network engineer and a musician. I had spent the last nine years of my life juggling a demanding job in a male-dominated field with my second career (and first love) – writing and recording music. I kept the two worlds meticulously compartmentalized. I wore long-sleeved shirts to hide my tattoos, and my long black and red hair was usually kept in a bun, which kept it – and certain ultra-conservative executives – out of my face. I wore glasses at work – what I referred to as my “Clark Kent Disguise”. I didn’t mind. It was just the cost of doing business, the cost of having the type of job that could support my very expensive music habit.
I got a feeling that this person, this Adam from Australia, understood that tightrope act as well as I did. I was in a weird place at that moment – seven months earlier, the album I was recording with my dream producer had fallen apart due to a perfect storm of an overconfident investor and a tanking web development business that couldn’t pick up the slack, with the added seasoning of the messy breakup of a nearly ten year relationship. Living by myself was amazing – the quiet of a home without daily screaming matches made my new small, dated condo feel like a refuge for my exhausted soul. But I was depressed and a bit lost as well – I owed my producer around $10,000, and I had just lost my largest client when their business closed up shop. I didn’t see a way out – I was drowning. Talking to someone interesting, who has no skin in the game, who is at what can only be called an ultra-safe distance, could at the very least, take my mind off of the shit show that my life had become.
Fuck it. I’m going to write him an email. What’s the worst that could happen? I quickly powered up my laptop and opened a web browser. I didn’t remember his user name – I didn’t think I’d need to – and at first, I couldn’t find his profile. A twinge of disappointment hit, and I felt like an idiot. I don’t even know this guy. But after a few more scrolls and nexts, I found what I was looking for. I quickly dashed off an email, before I lost my nerve.
We don’t know each other, but I was reading through your profile, and you seem like an interesting person. I know it might seem a bit crazy, but I figured I would open a line of communication with you, see what happens. Drop me a line.
A year later – after we had shared our best stories late into the night over an instant messenger, after he traveled to Miami as my friend and left as my (super long-distance) boyfriend, after I lived in Australia for three months while we figured out how we would make this insane new relationship work, and after we became husband and wife in a beautiful ceremony followed by a fabulously quirky reception – he shared with me his reason for responding to that first email.
“You wrote that you wanted to ‘open a line of communication’. That’s not a typical random email, and I figured you must have been a pretty interesting person, too.”
Right before our wedding, Adam began to ask questions about the record I was forced to shelve. I had, of course, shared demos with him, but I didn’t have access to any of the professional recordings, save for one early version of an instrumental track that I refused to play for him. Talking about the loss of my lifelong dream to release my own album always sucked the air out of a room, and I wanted to focus on the good – I had met an amazing man, one whom I loved deeply. I was marrying my perfect counterpart – he kept me grounded, balanced me out, supported me and made me feel safe and cared for. We could talk about anything, he was definitely attractive, and the Australian accent was a nice bonus. Why spoil it by rehashing old problems?
But he persisted, and I finally gave him permission to listen to the one partially completed track that I had access to. I showed him the location of the file and paced the room nervously while he played it on his laptop. He listened intently, his eyes becoming brighter and more engaged with each new passage. Finally, the song ended, and he looked up.
“How much do you owe on this?” I cringed.
“Ten thousand dollars. I probably shouldn’t have hired someone so expensive, I know. It’s just that he’s so good, and I thought I had the money…” I rattled on, trying to preemptively shut down any chance of him voicing the thought that had eaten at me for over a year – what was I thinking?
Adam looked back to his computer and began to type. I fidgeted with a long strand of my hair and clenched my teeth. I imagined that, as an accountant, finding this out now was much like a militant vegan finding their betrothed sneaking pork ribs in the master closet. What in the hell is this nonsense? Who invests this much money in an album by an untested artist with no label backing? And for the love of all that’s holy, she’s thirty. Who starts their music career when they’re thirty? I can’t marry her, she’s bonkers.
“I want to finish it.” I froze. The room started to spin a bit. I wondered if I was asleep.
“This is so good. It needs to be finished. Find out how we can pay this off,” Adam said like he was ordering hot tea hold the lemon, while I felt like I might just be having a heart attack.
“You can’t be serious.”
“But I am serious. Call the studio. See if they can book you for the week after our wedding.”
“You want to spend our honeymoon in the recording studio? I mean, that would be great, but…”
Adam smiled and threw his arms around me, looking into my eyes, where I was convinced he could see my brain short-circuiting in real time. “I would do anything for you,” he said. “It will be fun.”
The self-titled record was released in 2012. Independently-backed bands are notoriously difficult to break, but Love in War began to gain traction quickly, attracting management teams and distributors who were eager to help move things to the proverbial “next level”. Tours were planned and played, a music video was created, and Love in War seemed to be beating the long odds afforded to rock bands in the modern music business. It was all happening, I was on the precipice, the dream was taking flight.
But flight is a risky endeavor.
Things went downhill quickly after that disastrous show in late April 2013. The pain in my head began to escalate to a constant barrage of jolts – the only thing that changed from moment to moment was the specific path the shock took on its journey from that pressure center at the base of my skull, over the curve of my head and into my eyes. My neck, upper back, and shoulders were pure burning pain, and I struggled to turn my head at all. The cruelty of this pain prison didn’t allow me any breaks, and I often lay in bed awake, crying out of sheer exhaustion and pain, watching the evening darken to night, the street lamps come to life, and then die again as the sky slowly lightened again. I became delirious.
On April 22, my husband came home for lunch and found me on the couch in the living room, pressing a couple of pillows into my head, a sheet over my eyes to shield them from the daylight that had become my mortal enemy. I was incoherent – the potent mix of sleeplessness and excruciating pain had reduced me to a puddle of tears and primitive wails that made it clear that something was very urgently wrong. Adam drove me to the emergency room, which was less than a mile from my house, and demanded that they admit me to the hospital.
“What is your name ma’am? What is your birthday?” The young nurse continued to click away at his keyboard as he waited for the answer. “Ma’am?” I realized that I had no idea. I looked up at my husband, and something in my eyes must have clicked with him before I said a thing, a look of horror washed over his face, and in a hoarse whisper, I begged for a lifeline.
“Adam, help me.”
I don’t remember much of the next few hours. I know that I came to at one point and went into the bathroom, my head still pounding, looked into the mirror, and saw that one of my eyes was turned slightly inward. I stared at myself for several minutes in the harsh fluorescent light, at first believing that I was mistaken, and then trying to will it to fix itself. My eyes are fine. I have 20/20 vision. Fuck you, eye. Go back to normal. Fuck you. My eye refused to comply, and I went back to my bed.
A tall doctor walked into my room to ask questions of me, and when he became frustrated with my lack of useable information, he grilled Adam.
“How much has she had to drink tonight?”
Adam looked at the white-coated man, puzzled. “What? Nothing.”
The doctor raised his eyebrows in the universal signal for whatever you say, buddy, and wrote something down in my folder.
“What drugs does she use?”
Adam was taken aback, but kept his cool. “She doesn’t use drugs. Why would you think she uses drugs?”
The doctor sidestepped the question and circled back. “Seriously, how much has she had to drink tonight?”
Adam was a man whose calm demeanor was as reliable as the midday rain in summer, but the edges were beginning to fray. It was two in the morning, and he had been in the ER since three in the afternoon. His wife was potentially dying, and this asshole was wasting time. Adam finally snapped.
“NOTHING! She hasn’t had anything to drink! We have been here since three! When the FUCK do you think she would have had a drink? She can’t remember her name, for fuck’s sake! She’s been vomiting constantly for days! My wife is suffering, nobody is helping her, and you are wasting time asking me about her drinking habits? SHE DIDN’T HAVE ANYTHING TO DRINK!”
The doctor left the room with an incredulous look on his face, and Adam slumped into one of the hard vinyl chairs near my bed. He placed his hand on top of mine, and leaned forward, exhausted. When a nurse returned, he looked up, prepared for another round of “we think your wife is a drunk.” The nurse spoke calmly and clearly.
“We have a room for her. She’s going to be admitted to the hospital.”
I was denied any pain medication whatsoever for the first ten days I spent at the hospital. At first, they mistook my crying, writhing and vomiting as a sure sign of a junkie experiencing withdrawal, but as the days passed and my condition worsened, the running theory became that I was having a psychotic break. I finally spiked a 103-degree fever on day 10, and the staff was finally convinced that there was a real problem afoot. The doctor ordered a lumbar puncture, and the news was like a bomb in the dark, silent room. I had a rare form of fungal meningitis. My skull had become a pressure cooker, the swelling was causing brain damage and immediate action was vital. I was finally, almost begrudgingly, given dilaudid, and was started on a six-week regimen of what is referred to as “ampho-terrible” – an anti-fungal that lives up to its nickname.
After six weeks of daily infusions, my lumbar punctures were still not coming back clear, and my hallucinations and pain were worse than ever. My new doctor, a large Jamaican infectious disease specialist, who wore colorful skin-tight knee-length dresses under her white coat, was highly concerned. A neurologist was called in, and the decision was made to place a VP shunt. A hole was drilled into my skull, and a tube was placed to drain excess fluid away from my brain and into my abdomen, in an effort to lessen the pressure in my overburdened skull. I remained confused and in pain for a few weeks after the surgery, in a constant hallucinatory state that was only calmed by the administration of the morphine derivative I was allotted every three hours. The daily amphotericin was continued, and eventually the fog began to lift. I began to feel better – the hallucinations faded away, my lumbar punctures became clear. Everyone – the staff, my doctors, and my husband – all breathed a sigh of relief.
The relief didn’t last long.
I had lost almost thirty pounds in the two months I had been hospitalized. I had trouble walking, so I was moved into the Rehabilitation Center within the hospital, where I was given daily physical therapy. My right eye had given up and gone gray after months of double vision, and I didn’t know how to function as a half-blind person, so my occupational therapist worked with me on completing daily activities. One day, as I sat with my speech therapist, I realized that I felt “off”. I told her that I wasn’t feeling well, that I needed to reschedule. She packed her things and walked out of the room, shooting me a quick, “see you tomorrow!” as she emerged into the hallway.
The next thing I remember was being wheeled on a gurney, a heart monitor attached to my chest, and overhearing a nurse saying that something had gone terribly wrong. My regular infectious disease doctor was away on vacation, so they brought in a colleague to take a look. He ordered an EEG and gave my husband the news.
“She has encephalitis. It’s as if her brain is being assaulted by an egg beater. The reason she doesn’t remember what happened is that she is having seizures. We have to get this under control. And another thing – we looked at her blood tests, and her t-cell count is extremely low. We tested for HIV, but she isn’t positive. The only thing I can come up with is a rare immune deficiency called ICL, but we really don’t know much about it. There is only one medication that I know of that would boost her immune system enough to fight this off, but it’s hard to get. I’m going to make it happen though. I’m doing everything I can.”
My body was not capable of combatting encephalitis, because the rare immune deficiency I was suffering from meant my T cell count was dangerously low – some tests put my number in the single digits (normal is 550, at 330, HIV patients are considered to have full-blown AIDS). This new doctor ordered in interferon against the hospital’s wishes, at a $12,000 per week price tag. When my insurance refused to pay for such a rogue use of the immune booster, he covered the cost himself. He explained that he knew it was off label, and he knew it was expensive, but he was positive that this drug was my only hope of surviving.
As the encephalitis took hold, I began to hallucinate again, but these new hallucinations were frightening – I was disemboweled, a man had come into my room and pointed a gun at my head, my TV told me that there were people coming to kill me. I didn’t trust most of my nurses – I was convinced they were part of an evil cult that was recruiting my family. I had lengthy absence seizures, where I would stare off into the distance mid-sentence, my eyes would become saucers, and my lips would move uncontrollably. I was never aware that this was happening, and I often came to days later, having no memories at all of the experience.
When the interferon was delivered, my new doctor came in every other day to shoot a dose into my leg, and see how I was coming along. A week into the doses, my immune system rebounded slightly, and the plethora of other medications I was on began to do the thankless job of cleaning house. I quit having seizures during week two and started to initiate conversations again, albeit rambling, incoherent conversations that often ended mid-sentence when I forgot a word, or became exhausted. I could feel the entire floor of the hospital, where I had spent 160 days of my thirty-third year, breathe a collective sigh of relief as I started to gain color, awareness, and an appetite.
I was released from the hospital in August of 2013, weighing only 87 pounds, unable to walk unsupported, and blind in one eye. I sported a PICC line in my left arm, the four ports left in place for the outpatient infusions I would continue daily for the next three months. Entering my house was surreal – it was almost like I was entering a place for the first time that I had only seen in a dream. My two dogs didn’t recognize me, my smell transformed into a sanitized, hospital-scent, and backed away in fear. My heart broke. The dogs knew what I felt very keenly, but everyone else avoided – I was different. My brain felt like an AM radio quickly scanning through all of the frequencies, over and over. I couldn’t make complete sentences most of the time, and I often mixed up words that started with similar syllables. I didn’t know who I was anymore at all.
Any movie that makes recovery look like a long, upward-sloping curve of daily wins and increased ability is at the very least, putting Vaseline on the lens. At the very worst, it’s full of shit. Recovery is not linear, it’s not predictable, it’s not some montage in a feel-good Lifetime movie where the hero goes from gritting his teeth to running a marathon in the span of a power ballad.
My bedroom, a large, sunny room with a fancy mattress and a large walk in closet, was upstairs. So for the first few months, I slept on a blow-up mattress in the living room, an uncomfortable thing that made getting up without help a real challenge. I was driven to my infusion appointments daily at nine am (driving was out of the question), where I spent between five and seven hours being given potassium drips and the Gatorade-colored amphotericin. Amphotericin is hard on the body – it is similar to chemotherapy – so after I was driven home, I would often fall asleep again. I required help for almost everything – going to the bathroom, fixing food (which I avoided – everything tasted terrible and I was nauseous constantly), taking a shower. Any vanity I had that wasn’t killed by four months in the hospital was quickly erased during the first months of my recovery.
I couldn’t use a computer – bright light gave me almost instant, violent headaches – so returning to work, even part-time, was a no go. I required every curtain to be closed and every sound to be silenced. My injured brain raced like a runaway freight train, and was just as noisy. I felt disconnected from the world around me and the people in it. I remembered some books I had read on Buddhism, and wondered if this was the “non-attachment” concept that they spoke of. I purchased some e-books on meditation to read during infusion sessions, but even with the font made huge and the background set to black, I was incapable of concentrating on the words. Over and over, I would read the same paragraph, instantly forgetting what I had just read and starting from the beginning. Eventually, I gave up on the books and spent my time in infusion watching old Dr. Phil episodes on TV.
At first, I avoided talking to most people. When I would try, I felt like Hansel and Gretel, traversing the woods alone, relying on a trail of bread crumbs that had become disconnected in places where thoughtless animals had come to dine. I would start a sentence and have such trouble connecting the words, finding the concepts that I wanted to express, that I would trail off midsentence and sigh, a universal sign of accepted defeat. When this happened, I would see a dark shadow pass over Adam’s face momentarily, as he wondered how long this could go on, and then he would return to normal, and ask me if I needed anything.
Adam was my stability, my anchor during this time – any frustration that he felt as a result of my condition was carefully expressed so as not to fuel the unspoken guilt I carried at having ruined everything. He sat with me for those first few months when I cried, almost daily, over my lost eyesight. He never once complained that the loss of my income was causing financial stress, even though I knew very well that it was. If one could achieve sainthood via cleaning up messes and soaking up tears, Adam would have been voted in unanimously.
The daily infusions went on for three months, every day. Twice, I had to be given blood transfusions when my blood tests came back showing that I was in a severe state of anemia. My day would start at nine am, when I would be wheeled into the infusion room by my dutiful husband, and checked in by my usual nurse, Terry. Terry was a slightly-effeminate middle aged man who at first irritated me with his resemblance to my least favorite high school English teacher – every day, he would look at me, frown, and say “you’re late,” while preparing to TPR my PICC line and draw the several vials of blood they tested each morning. After clearing my lines, which were always clogged, he would draw the blood and start the first of my three (on a good day) bags of medicine. Amphotericin leaches potassium from the system of the unlucky recipient, which necessitates sandwiching the medication between two huge bags of potassium solution, four if the levels are especially low. After the starting potassium was finished, I would get the radioactive-looking Amphotericin pumped into my veins for a couple of hours, and finish with another round of potassium. I have never had to pee so constantly as when I was in infusion. I took to wearing diapers every day because my shuffling walk, supported by my IV pole, wasn’t always fast enough to make it to the bathroom in time.
In October, after four months in the hospital, and three of daily infusions – the supposedly six-week round of Amphotericin had ballooned into nearly six months – I was cleared to stop receiving the medication, and have my PICC line removed. The whole thing was very unceremonious – a nurse just dabbed some alcohol on my arm and pulled out the long plastic tube – and I was released to go home. By then, Terry and I had formed a kind of unspoken friendship, and he seemed as though he was sad that he would no longer be seeing me every day. I promised to come visit when I could, and walked (with my husband’s arm holding me up) out of the hospital into a life in which, for the first time in my life, I had no plan. The only goal I was capable of was the frustrating and unglamorous goal of trying to become who I used to be. But if that was my only option, and it truly was, I was going to fight tooth and nail for it, as I had for my past, far more exciting dreams.
Over the next few months, I regained the ability to walk, which was a long, tedious process of forcing myself to use my walker to traverse my home, cursing the fact that we had bought one so large. I began to practice conversing with close friends, ones who would not laugh or make jokes when I would say “shit” instead of “shirt”, and I learned to cope with my new vision situation. I still avoided going into public for many reasons – I required help to walk, my conversation skills were still very questionable, and, to be honest, I looked like absolute hell. But no one can hide forever.
In November, I got word that the yearly local music awards show was coming around, and that we had been nominated in multiple categories. A year before, we had won the award for Best Original Rock, which was the big prize of the night, and a huge boost to our confidence. This year, we were not only nominated as a band, but I was nominated as a singer/songwriter. I was wary of making an appearance. The year before, I had worn a beautiful vintage silver floor-length dress, looking the picture of health and radiance, oblivious to what the future held. This year, I was emaciated, my face was gaunt and my only choice of clothing was a black business suit that somewhat hid the stick-like appearance of my limbs. But I made the decision to go ahead, to show up to the event. I insisted that I have a place to sit that was away from the crowd, and that no one made a big deal about me being there, and the group who ran the awards obliged.
I was completely unprepared for the rush of people – everyone wanted to talk to me.
“That’s so terrible, what happened to you!”
“How are you feeling?”
“Are you all better?”
“I just want you to know, I prayed for you.”
I found my seat quickly, but the rush didn’t stop, and I was thoroughly unprepared for all of the questions, conversations, hugs, and invasion of my personal space. I spent the evening feeling like a feral dog trapped in a cage, and even when they called my name to award the singer/songwriter of the year award, which Adam accepted in my stead, I couldn’t find any excitement through the fear and the oppressive anxiety that was bearing down on me. I knew that everyone meant well, but I felt like a circus freak on display – “The Girl Who Came Back From the Dead” – and I wondered if the awards I had been given, in a year where I produced nothing and my only achievements had to do with not falling when taking a step-down or not pissing my pants before I got to the bathroom, were nothing more than a hollow show of sympathy from a music scene that didn’t know how to deal with this sort of thing. I went home and cried myself to sleep.
I struggled for months with my new reality. My piano was an especially provocative symbol of fear to me. What if I couldn’t play anymore? What if it didn’t make any sense to me? What if I was going to be cut off from the one thing that had defined me, my entire life?
But every time I walked through my house, managing a quick, distrusting glance at the piano-shaped elephant in the room, Adam would place his hand on my shoulder, kiss my forehead, and say, “It will come back. I know it will.” I wasn’t so sure. One day when I was alone, surrounded by silence and sick of the afternoon television shows, I gingerly walked to my piano, running my fingers along the smooth white wood of the cover. I pulled out the bench, sat down, and steeled my nerves. Quietly, I began to play a song I had written. From memory.
Adam was right.
I returned to practicing piano daily, and I called my bandmates, telling them it was time to give this another go. We started off slowly, each member showing up to our house and tentatively setting up their equipment, looking at me as if they were trying to figure out whether I was ready to do this, or just too wrapped up in this thing that had ruled my life to admit it was time to throw in the towel. But as we practiced, week after week, the old chemistry emerged, the songs reformed like a week had gone by, rather than nearly a year. The decision was made to plan a return show, one worthy of a rise from the dead.
Our favorite local venue, a restaurant reminiscent of an underground New York hot spot that transformed into a high-end rock venue by night, and the location of our album release show two years earlier, was the perfect location for the celebration in March of 2014. The local rock radio station was set up for an on-location radio promo, and two young girls in tight tank tops bearing the station’s logo cheerfully handed out swag to the show-goers as they entered the venue. When I entered the large black-painted room with its hand-painted band artwork lining the walls, bright colored lights peeked from behind the closed stage curtains. A feeling of excitement leaped up from my chest into my throat, and I smiled – a big, unforced, authentic smile like I hadn’t been able to muster since the beginning of my illness. This is where I belong.
I went to the back and snuck into the business office that, on this night, doubled as a dressing room, and changed into the dress that I had purchased for the occasion. It was much more girlie than my usual show fare of black skinny jeans and artsy jackets – a short, flesh-colored satin party dress with a black lace covering, and a skirt that fanned out slightly from the waist. I slipped on some fishnets and a pair of Doc Martens to even things out, and finished up with a swipe of deep burgundy lipstick. I didn’t feel exactly the same as I used to – I was especially nervous about forgetting the words, forgetting the songs, going off the deep end again in front of many of the same people who had witnessed my graceless fall a year before. I took a deep breath and looked in the mirror that was leaned carelessly up against one wall, smiled at what I saw, and exited toward the stage.
For the first song of the show, we decided that it would be fitting to break out a song we had never done in public, to the disappointment of many a fan – my cover of “Wish You Were Here” by Pink Floyd. The opening synth line flooded the speakers, and the curtains began to open. I stood alone on the stage, bathed in blue lights that seemed to come from everywhere, and as I looked up, I saw a sea of faces, and a sea of small candlelights being held in the air. My breath caught in my throat and a tear escaped from my eye and made its way toward the floor. All I could think, as I opened my mouth and the words, the correct words, came triumphant and clear, was that I was home.
This essay was written as an assignment in Introduction to Creative Nonfiction with Yascha Mounk.