It started five years ago on an otherwise pleasant September evening in Lahore. I was sitting in a cinema, watching a musical about a guy who wanted to be an actor but was stuck being a lawyer and wasn’t good at either thing. He had just broken into song after winning his first case when I started feeling a burning sensation in my abdomen, one that soon became a stabbing, skewering whirl of pain. It felt like pins and needles, like a scalpel running through my insides. It had me wincing on my seat even as the judge on screen was wincing behind his desk at the clamor outside his courthouse.
My friends and I had been excited to see the legendary Indian actor Om Puri appear in a Pakistani film, so I thought about braving it out till the end. But Actor in Law is two hours long and we were only twenty minutes in. I decided to go home and rest, to wait for the pain to go away. I’ve been waiting ever since.
Through the subsequent hospitalizations and seventeen emergency room visits, I was diagnosed, misdiagnosed, and confusingly told that I’d managed to acquire a condition so rare it didn’t even have a name. Yet. One of the few ambitions I have left in life is that one day they’ll use mine. My scans were always clear. There was nothing unusual in my digestive tract, nothing strange in my lumbar region. There were no growths, no tumors. Yet the pain was so scalding that it came with paroxysmal intensity.
The doctors would eventually refer to it as “some severe form of neuropathy,” “a dysfunction in your peripheral nerves,” one that “likely extends to the central nerves as well.” The piercing, burning pain would radiate to my groin, my obliques, my back; it would cause spasms in my thighs, spasms near my heart. The doctors would just as vaguely remark that these things can only be managed, not cured. That the body’s signaling pathways malfunction at times, processing normal stimulus as pain, pain where there isn’t any. Phantom pain. What they were trying to tell me was that I have a very nervous system.
My body refused to sit, it wouldn’t bend. I couldn’t raise my knees, I couldn’t walk faster than a crawl. I couldn’t climb stairs or pick up anything of weight. I couldn’t lay on my sides or lean against a pillow. Any posture that didn’t imitate a corpse lying perfectly still was painful.
Over the years my skin got so sensitized that everything hurt on contact. I could no longer stand under a ceiling fan or in front of a shower. I felt pain from the vent of an air conditioner, from the swirl of someone walking past me, from the pendulations of a car ride. Wearing a shirt became a harrowing experience reminiscent of my adolescent days when I considered clothes a horrible tool of oppression. I started avoiding crowds and proximity with other human beings; an errant elbow or a careless hand would have me reeling. I maintained a fanatical aversion to hugs, although I’m told this was true before my condition too.
Allodynia is what they called it. “Please don’t examine me by touch, you can look at my medical files” is what I called it.
The doctors went about managing my condition with morphine, ketamine, lidocaine, and a list of nerve response depressants so long I had to take a dossier every time I went to the pharmacy. I’ve been hooked to catheters that pumped anesthetics into my epidural space. I’ve been given enough tranquilizers to sedate rampaging elephants. I’ve had multiple seizures and managed to crack my skull open by falling down, repeatedly, during the worst of them in 2017. I was blessed with a hemorrhage as a result and spent an intimate weekend with a ventilator, in a coma.
It took me weeks to learn how to talk again without slurring, months to recover my right hand from the partial paralysis, a year to regain memories that had been knocked loose and were floating freely in whatever was left of my head. Yet these remained the least of my problems, because this pain would not relent. That film in 2016 took two lives: mine and Om Puri’s. He died of a heart attack shortly after it was released.
When your illness is shy and doesn’t reveal itself to magnetic resonance or computed tomography, you get pointed toward the psychiatrist’s office to see if you are of sound mind, so that you’re worth making of sound body; empathy sometimes vanishes once those machines stop whirring. Phantom pains can come with phantom explanations—past or present trauma, maybe a general unhappiness with life, maybe withdrawal. I suspect that my first physicians believed I was either addicted to opium or afflicted by madness.
Their hospitals operated as human repair shops. They needed clearly defined problems readily apparent on films and in labs, otherwise I was holding up the conveyor belt. It wasn’t until I started seeing neurologists that the reality of my pain manifested in my medical records.
After the aspersions on my mental health were over, I found myself in niche clinics working with obscure technologies. In an annex to a small hospital in Lahore, pain management specialists gave me steroidal nerve-block injections that stopped the pain for a few hours. They told me to go to the United States where doctors can use radio waves to kill off nerve endings entirely, which can stop the pain for a couple of years.
My parents already considered American research hospitals the most advanced theaters of medicine in the world, so they gladly took the doctor’s suggestion and scheduled appointments. The man at the immigration desk who took me to a separate room after I landed in the state of Ohio, in June 2018, was looking through my phone when he asked, “Think you’ll get better here?” I promised him I’d try.
The radiofrequency ablation I received at Cleveland Clinic didn’t prove effective. The needles could only target the major nerve bundles coming from my spinal column, not the millions of smaller nerve clusters in my skin, in my soft tissue underneath. Even after the procedure the pain kept on finding its way.
The anesthetic interventions at Johns Hopkins were more successful. One doctor put temporary attachments in my back that doused my central nervous system with anesthesia, drowning entire parts of my anatomy in sensory silence. The catheters would often accompany me back to the places I was living in. Despite the procedural advice to stay off my feet—the anesthesia could affect the motor function in my legs—I sauntered to the kitchen one afternoon to get some soda to wash away the bitter taste of constant medication. On the way back to bed, my legs collapsed. I fell in slow motion like in the replay reels of a football match, with all of the drama but none of the cameras. I clawed at the chairs, at the air, at anything that could stop my descent to the floor. By the time I could feel my legs again my mother had already rescued me from my incapacitation.
At times like these I thought immobility an infinitely worse thing than pain. But when the pain came swarming back I remembered the numbness of anesthesia quite fondly. I never called myself disabled even as I was struggling with basic movements. I felt like a charlatan in disability discourse because I could still do everything; there was just a terrible pain price to pay for it all.
Eventually doctors recommended more permanent and—as with nearly everything in the American private-insurance system—more expensive devices for pain relief. They were also more intimidatingly titled. A morphine pump. A neuromodulator. I opted for the neuromodulator, an instrument inserted into the spinal column with a few electrodes and a battery. It’s a signal jammer for the body, something that can scramble communication between the nervous system and the brain. An external controller adjusts the amperes of electricity tingling through the nerves.
I went to a very serene part of Dallas for the implants. Before they were inserted, the medical representative at St. Jude’s asked me how I preferred connecting the battery to my controller. Through the internet or through Bluetooth? I felt a certain shame at the possibility of being electrocuted while walking past someone’s Wi-Fi router, so I chose Bluetooth.
As I toured America looking for panaceas I found a need to call myself something, anything, a word, a term that was foreboding yet illustrative. One that could explain to airport security why I could not be body frisked, why I had to stand at a distance during the immigration lines, why I wouldn’t sit down during the interviews. Why when I was in a plane, thousands of miles in the air, I was never in my seat. I still haven’t found a sufficient one. Language is rarely equipped to handle extremities of experience.
In the end, I asked my doctors back at Hopkins to print me a letter detailing my condition and the foreign objects in my body. I was returning to Pakistan where in 2019 there were still metal detectors outside hospitals and offices and schools and bazaars. I didn’t want to set off alarms with every passing step, in every passing place.
Back in Lahore, I often wondered if I would be struck by lightning during the monsoon rains, and in the event that I died in a thunderstorm, could I be sold for scrap?
By the time the viral apocalypse announced itself last year, I found myself in a strangely well-attuned position to weather the social-distancing storm. The neuromodulator had yielded erratic results. What was meant to relieve 80 percent of the pain was, by my best estimation of my agony, relieving only 30 percent. Coping with the rest of it took all my energy and I holed myself up in the medical dungeon that my basement had become. I wasn’t meeting people, I wasn’t making plans. I was unemployed and unemployable. The scant freelance writing I did rarely demanded that I leave my home. In the eight months before the coronavirus, I had gone out once, for a friend’s wedding in Islamabad, because missing it would have meant forsaking the normal years of my life. But the traveling knocked me senseless for days.
There weren’t a lot of places left for me to go in any case. The destinations on my itinerary in the years since the onset of my symptoms had been either hospitals or centers of alternative medicine. My mother, with the “something out there must work” resolve that only mothers can have, took me to a gemstone healer in 2018. He spun a silver compass on a blank sheet of paper and told me my salvation was in whatever it pointed toward. It pointed toward a neelam. A sapphire. I told him I was flattered; he told me he wasn’t offering it for free.
My father, more conventional than new age, took me to a hakim who said I should recite some Quranic verses and eat two cashew nuts every evening. My father knew I wasn’t religious but as a thorough human being, courtesy of his bureaucratic past, he wanted to tick the box that said “we tried everything.” Maybe I remained unwell because I could never stop at just the two cashews.
On the way to these medicine men, I found many new intrigues in the oddity that is Lahore. Places opening and shutting down, like the Audi showroom with a service-road exit not large enough to drive the luxury car out. Or the plethora of new underpasses and flyovers that were suddenly there, like concrete apparitions—a wrong turn now sent you to whole other worlds of speculative housing societies, of malls and marketplaces under construction. I had been so long in isolation that the city where I’d spent most of my life was suddenly alien to me.
I learned how to do my own hair because I couldn’t sit in front of a barber. All it needed was an assemblage of mirrors and a few sleights of hand and, perhaps most importantly, nobody around to see the results. In the kitchen I started experimenting with paprika and bell peppers whereas previously I could only fix together what someone once described as generously salted prison meals. I started making homemade cat food too; in the culinary realm, cat food is the ultimate initiation. Humans will let you down softly, politely tell you that there were good things about your fumbling attempts at cuisine. Cats will simply refuse to eat. Mine do.
There’s a certain honesty to animals. My exchanges with my indoor cats, their hissing hatred for the ferals outside and their desire to throw things off my furniture, are the only meaningful conversations I’m involved in. These sentient rugs have done more for my depression than sertraline and escitalopram combined.
In the early days, when my condition seemed transient, I kept making commitments—to projects, to people—in the presumption that things would be normal soon. Maybe next month, maybe next year, definitely the year after that. I kept saying yes to everything until each yes eventually turned into a can’t. I never said no. Because saying that word felt like sentencing myself into irrelevance, a living form of death where I would be forgotten about entirely. The fear of missing out drove me to keep disappointing people until there were no expectations left.
Incrementally, I receded from the world. I missed births, deaths, and many of the things that happen in between.
When one can’t talk to the living one naturally starts communing with the dead. I started reading letters, correspondences, and memoirs from the distant past. Books are conversations with history, and the poet Ghalib’s struggles to restore his pension and worries about financing his love for alcohol may be centuries old but they remain relatable. The good thing about conversing with the dead is that they can’t take offense to anything you say in reply; the bad thing, I suppose, is that they always get the last word.
At the end of 2020 a friend asked if I was now an eclipse that could be seen only twice a year. We’d been arguing over text. I said I’d see her once there was a vaccine; she said there’s no vaccine for your personality. She thought the virus was an excuse, which was in small part true. My concerns over hanging out with other people were about infection, sure, but also—what would we even do together? When a singularly unique experience colors everything in your life, the number of mutual interests you can explore with another person take a severe tumble. Her interests were graphic design and putting together cheese platters for parties. My interests were reading the literature from medicine boxes and googling lymphomas.
My social interactions had long consumed themselves with death and disease. I suppose it started with me asking my friend Moaz for a gun. It had been months of being bedridden and running out of walls to stare at while waiting for my anesthetics to kick in. He naturally asked if I was planning on killing myself. I told him I’d like the option. I could barely hobble to the bathroom; climbing two flights of stairs to throw myself off a roof was out of the question. It would hurt to get up there. I was suicidal not stupid.
I explained that my brain had been constantly throbbing since the hemorrhage and the resulting surgery to remove the blood clot, that my scalp felt like it had been the grounds for a nuclear explosion. It was raw to the touch, and the scars were raw to look at. I called Moaz because he’d always had guns in his Hilux, because his family had long-standing property disputes in their ancestral towns and villages, because rural land holdings often needed urban weapons to protect them.
Years ago, when we were still young and feeling through our expressions of masculinity, he was my window onto the world of firearms. He came from a wealthy union of industrialists and agriculturalists. The first time we went to his farmhouse we shelled defenseless trinkets lined up in front of a eucalyptus tree. He gave me two handguns that were delicate to aim and a shotgun that was impossible to miss with. The reverberations of that shotgun kept my ears ringing for days.
When I was 16, I frequently asked my parents why we didn’t have a gun at home. I argued that it made more sense to have one and not need it than to need one and not have it. I went to an all-boys school; as we got older and angrier, we took cars full of rabid teenagers to our feuds, with bricks under the back seats and Mausers in the glove compartments. The guns were given by fathers slightly richer than mine, with enough power and influence to plan for when a fight gets out of hand.
My own father was ideologically opposed to having an instrument of death in his home. The world has a strange way of validating opinions at times. One of his best friends, who was fond of hunting, was home one evening cleaning the chambers of his rifle, in his lounge, when the gun went off by accident. It was loaded. The tragedy that ensued was never spoken about again, just like guns were never spoken about in our house again.
Moaz, then, was my only hope. After several minutes of silence he struck a bargain with me. He would take me to a pir and if nothing the pir tried worked, he would get me the gun. The pir was a spiritual guide and faith healer to thousands. He had a nuskha for everything—for getting married or getting divorced, for resolving property disputes or causing them, for getting banks to give you a loan or getting banks to forget that you still owed them money. He also had nuskhas for the inability to produce progeny and ailments that betrayed conventional medicine.
The pir’s house was in the middle of nowhere, on the outskirts of the city, a wilderness well suited for mysticism. He beckoned me inside his courtyard and asked in a fatherly way, What can I do for you son? I told him my medical travails. He said we must do an istikhara.
He asked me to flip open the Quran and read out the verse that my fingers chanced upon, and in that verse we would find our guidance. I flipped open the holy book and the verse I chanced upon was about being woken from the grave on the day of judgment. He quickly shut it and asked me to flip it open a second time.
On our way back I asked Moaz if he was convinced of my doom now. My friend, a robustly religious man, sat there, shook his head vociferously, and said that what was happening to me was truly awful. He wouldn’t wish it upon his worst enemies. But he wouldn’t be able to live with the guilt if he was the one to gift me my demise. He dropped me home and left. My istikhara had been for nothing.
I remember wondering whether I needed better friends or worse friends to acquiesce to my demands for self-inflicting weapons.
I used to think I had the most rational reasons to kill myself. The situation was hopeless, the prognosis bleak. When the pain first started my greatest fear was that it would turn out to be cancer. Will this be fatal? I worried. Will this be the end? After it showed no signs of relenting my fear had a swift reversal. They say it’s not fatal; will this pain never end? Then came the worst fear of all: What if it does end one day? What will I do? Who will I be? I don’t remember the last time I thought of myself as human instead of a collection of scars and abnormalities. Even if this torment ends someday I’ll be a middle-aged man with no prospects in life; single, unproductive, and full of bitterness. The mental trauma alone will take years to address.
My vivid memories are now all of body horror and lying very still while staring at the flickering lights on hospital walls. When I was on ketamine the walls would move; when I was on morphine the bed would. I knew I was heading toward a life of seclusion and resentment, toward becoming the abyss one does not stare into.
Yet there was always a gnawing feeling holding me back from the precipice of self-annulment. Mainly that oblivion is final, irreversible. It would deny me my favorite pastime—regretting things after doing them. No chance of that in an eternally blank state of consciousness.
During the throes of isolation, I was woken one evening to be told that my father had just died, that my mother had gone to the hospital to retrieve the body, that a funeral was being prepared, and that I didn’t need to worry about the arrangements. I was free to grieve in my mostly empty basement with only cabinets full of painkillers for comfort.
The night before I’d spent sleepless because I had convulsed with pain throughout. The nights following I spent sleepless because I was thinking of all the things I still needed to talk to him about but never could. He’d had a constricted artery and his doctors had told him to go for walks and expand his arteries with endeavor instead of angioplasty. A week later he was dead.
He had reconciled with death long ago. He would often talk of his years as a surplus, a bonus; the life expectancy of a Punjabi man is not overly ambitious. We eat and do excessive things. For him 72 was more than enough, he considered it a life well lived. I on the other hand was in no state to let him go. His own father had lived to 84, and always swayed by statistics I thought I still had more time with him. To finish interrupted conversations, to go over partially told stories, to recall forgotten ones, after whatever was ailing me would finally abate. But probability failed me twice.
I was mindful of his growing years and avoided talking to him of medical things unless it was absolutely necessary. When I broke my skull it was my father who found me in a pool of my own blood. I found out later that I told him I didn’t want to go to a hospital at the time, that it was past midnight, that he shouldn’t drive at this hour, that we could always go in the morning after breakfast. I wasn’t in my senses but I was lucid about his risks.
I’ve lost many more friends and family during my years of duress. The world I knew from before, the people, the possibilities, everything I had withered and wilted. The next time I fell there would be fewer people to find my bruised and broken body.
The most difficult thing about constant pain is trying to sleep through it, trying to sleep while a part of your brain is still processing fireworks going off elsewhere. There was a time when I resorted to wolfing down Ambien by the leaflet. The maximum safe dosage is cautiously set at 15mg a day; I was taking 80mg every night to numb my brain into submission. I started getting spells of somnambulism, or sleepwalking. But with the compromised motor function that comes from Ambien’s sedation, it was more like sleepfalling. I fell and hit my head a further two times after the fall that sent me into a coma, damaging one eardrum and what little was left of my pride.
The sleeping pills weren’t the only slow poison creeping up on me. The nervous system depressants, the painkillers, the five years of duloxetine, diazepam, gabapentin, and opioids, brought their own complications: water retention, memory fog, swollen limbs, varicose veins. The neuromodulator, with its relentless current, exacerbated these side effects. I was beginning to embody the old adage of the cure becoming worse than the disease.
Covid lockdowns meant I could no longer travel back to America so I became my own doctor of sorts. I quit my medications and turned off the contraption in my spine, their middling success no longer worth the added baggage. I got tremors and shivers from the withdrawal, and zaps of static in my brain which I read was a common symptom of quitting nervous system depressants. Eventually the side effects eased off. My swollen limbs went back to normal, my memory and mobility improved, my cholesterol came down from lethal levels.
I’d accidentally gone back to the bare bones of medical science: that pain is the body’s way of communicating. Maybe it was time I listened instead of constantly seeking means of avoidance. After the noise from the medications and the machine disappeared, I noticed changes in my chronic condition. The pain was no longer sharp or burning. It was dull and heavy, like something was weighing me down from the inside. One pain management specialist in Lahore had long suspected some collapse of soft tissues under my skin, an entrapment of nerves, a cluster of injured fibers, hidden away from the areas diagnostic imaging usually focuses on. Muscles. Organs. Growths. Torsion, he called it, a possible first cause of what would eventually become diffuse nerve pain.
But until I can get back to the big research hospitals, any further explorations will have to wait. Waiting is what the world has been doing for almost two years now. People have been waiting for vaccine shots, aching to get back to some semblance of normalcy; back to the malls, the restaurants, the bars, the cinemas. I think I won’t be getting back to any of these anytime soon, my body would just feel out of place. “Normal” for me now consists of days where the levels of pain aren’t interruptive enough to force me to reschedule a Zoom meeting, or cancel an appointment with my dentist, or indefinitely postpone going back to my village, some 125 miles from Lahore, to visit my father in the ancestral graveyard.
Waiting for those days is what I consider normal. Living in perpetual limbo, pondering new ways to pass time, to look for distractions. The pain is so all-consuming that I’ve had to defer my grief, defer my trauma, defer all prior held ideas of a life. I’ve become somewhat of a deferred human being.
I’ve told myself that there are eight billion other people in existence at the same time as me. Some bodies have to malfunction so that the rest don’t. It’s nothing personal, it’s just chance. And mine has been a fairly privileged form of suffering, buoyed by books and television and just enough money to survive this succession of calamities.
Not long ago, the ascetics and yogis and Sufis of the Indian subcontinent were romanticized and admired from courtyards to court halls. We’ve all but forgotten our hermits now. One of the pitfalls of urbanization is that you can no longer occupy a hut on a hill next to untended land. You’ll likely have to pay rent on both the hut and the hill. Yet you can still find malangs in small corners of the city, at festivals and places of religious devotion. Ten years ago I interviewed a malang at the shrine of Mian Mir in Lahore for a story.
Contrary to my biased expectations, he wasn’t from the working class, the dispossessed, the ones with the least invested in our systems of capital. He said he was a former civil servant who had lost his wife to an accident and a child to cancer. Now he sat under a tree all day, in a tattered suit, with long braids in his hair and hashish in his pockets. He said he couldn’t go on with his life because he was unable to let go of his grief, which is all he had left of his family. He wanted to sit with it forever.
I didn’t understand it at the time and maybe I still don’t. His story stayed with me because it was another way of coping with tragedy. If it’s not possible to leave the pain behind, it’s perhaps possible to live with it.