Twice Numb (On Paralysis and Depression)

This has been the worst episode of Scrubs of all time.

BY: VAISHNAVY PUVIPALAN

Photo taken by Adsaya Puvipalan

The thing about getting paralyzed is that it didn’t happen nearly slowly nor suddenly enough. Slowly creeping upwards from the soles of my feet was the crippling sensation of my limbs turning to lead, a heaviness I was too weak to hold upright. Over the course of three days, I felt my legs turn to stilts. My jaw ached when I spoke or chewed. Food became unflavoured mush in my mouth. Eventually, I didn’t possess the strength to even blink.

A lumbar puncture, also known as a spinal tap is a procedure through which cerebrospinal fluid is siphoned using a needle in the back for the purposes of diagnosis. As I understand it, it's like tapping a maple tree for syrup. Don’t worry, it doesn’t hurt because the convenience of paralysis is that the numbness shields from the soreness. / Photo via Medical Images

Though puzzled at first, after about a week of various tests, having tubes and such shoved up my every orifice and countless scans taken of my brain, the team of pediatric doctors returned with a diagnosis: Guillain-Barré Syndrome. The neurologist left me in the ICU with a warning not to Google anything for my own good, advice I gleefully ignored.

WebMD told me (before my medical entourage got the chance) that Guillain-Barré Syndrome (GBS) was a rare neurological autoimmune disorder, a rapid-acting paralysis that severely impairs one’s mobility. Neat. Perhaps as a defence mechanism or something, I dissociated. I thought, ‘so you could be a totally—well, relatively—healthy and fit teenager and still get totally fucked over by your own immune system. That’s pretty wack.’ And then, somehow at once, cynical and optimistic, the thought occurred to me that this would one day make an interesting story and if I couldn’t get a memoir out of it, at least a scholarship or two. That is if I didn’t die.

For most with Guillain-Barré, recovery is as speedy as the onset and in no time at all, one could go from not being able to twitch a finger to walking normally again, as if there was never any illness at all. Which is, like, totally unfair because I was one of the unlucky few. See, the paralysis had spread to the muscles in my airway (Laryngeal? Pharyngeal?) resulting in acute respiratory failure.

 If this were an episode of House, this part would be the climax. All this to say, I couldn’t breathe. I had assumed that the suffocation would feel dry, like the cinnamon challenge. The reality was a gurgling chain of wet coughs that wracked the ribs. More like drowning from the inside. After days of not moving, these fits of violent coughing were the greatest signs of life my body had shown in a long time.

To my distraught mother, the panicked resident doctor assured repeatedly, “It gets worse before it gets better.” But even she didn’t look convinced. 

There was a significant chance that I could die.

Myself, beneath it all, the show of a body desperately fighting to stay alive, I was becoming increasingly amenable to the idea of my own death. Not in an edgy or existential way, I don’t think. Just, every part of me was sore and I was so tired of taking a chemical cocktail just to bear living. I just wanted it all to stop and be put out of my misery.

The Leaning Tower of Pills-a Photo by Adsaya Puvipalan

I didn’t die. 

My family and a fleet of doctors, nurses, physiotherapists, and a therapy clown rejoiced. Recovery was on a (distant) horizon. If this were an episode of Scrubs, this part would be the ending. 

And J.D. would be all, “They say that in life you don’t know how good you have it until you lose it. Or almost lose it.” Something like that. Acoustic guitar, fade to black.

But then, what to make of the remainder of my time at the hospital? According to my prognosis, the respiratory failure was the shortest and most exciting part of having GBS, a phase to be succeeded by a much longer stretch of time spent slowly regaining my strength. 

No inspirational memoir about conquering illness could have prepared me for the experience of half a year of profound boredom. I had few means of entertainment, either craning my neck to watch Gnomeo and Juliet on the television or to watch an endless stream of YouTube content on a phone. Most of the time, listening to visitors talk about me while I couldn't move my mouth to respond. I was the corpse at an open-casket funeral.

There aren't many ways to really amuse oneself while lying supine. Well, I can think of one. Before I subject myself to criticism for (trying to) masturbate in a children's hospital, do note that I was fourteen at the time, so still amidst puberty. 

To my dismay, despite all the effort I had put into bypassing the SickKids porn filter, I had little use for it anyway. Being fully paralyzed means being numb everywhere. This was my last-ditch effort to get some dopamine coursing through my system and it wasn't possible. Is this what it's like for people with erectile dysfunction? Wanting so badly to feel something, only to find that the ache you want so badly to relieve simply isn't there. 

I was never really an athlete before GBS, honestly. I had lived like I had made it a point to move as little as possible, so yeah, losing the ability to jerk off was by far my body's biggest betrayal to me.

I wasn't as overjoyed by my progress in regaining mobility as everyone else was. I occupied my time coming up with a hundred different ways to explain the sensation of losing everything and regaining it to the guests of my hospital suite. The refrain "pins and needles" grew grating to my own ears (such a delicate expression couldn't adequately capture the arresting tingling and prickling that comes with GBS). 

I would feign excitement at the prospect of this whole ordeal becoming a part of the past because I didn't want to come across as ungrateful. I wish I could say that I understood the value of my slowly returning mobility, but of all the symptoms of this disease, not moving, not eating, not speaking, not masturbating, none lasted as long as the depression.

My trusty steed / Photo by Adsaya Puvipalan

When I was finally ready to be back in the real world, although I didn't jump into living every day to the fullest (some folks start, like, running marathons after recovery), I did get to work on self-actualizing, as people who have gone through life-changing events should. Over the years, there have been no shortage of movements with causes I should be invested in, and of course, I care about them. Of course! But I can't help but think I'm feeling the wrong things, a dull hopelessness and ambivalence where there should be hope spurring me on.

Photo via Redbubble

September of 2019, a 16-year-old Greta Thunberg would demand UN delegates, “How dare you?” in a tearful and impassioned speech about taking accountability for the burgeoning climate crisis. Watching this teenager, only a few years younger than myself, despair over the state of the world was wrenching. I, too, was acutely aware of the rapid deterioration of our planet and yet was never moved to tears. I, too, among thousands of students, skipped class to attend the climate change rally and screamed slogans into the crowd from a wheelchair. But it felt so performative. Ashamed, I wondered, how solipsistic must one be to simply not care about the world we inherit. And it wasn’t just the Climate Movement, this numbness clouded my perception of #MeToo and #BlackLivesMatter, movements my beliefs align with. Sure, I managed to show up to all the right events and protests and say all the right things, while secretly believing “this is pointless, this is so, so pointless.” Again, I wanted so badly to be stirred, to feel something, but I just couldn’t. It didn’t help that these ordeals were so physically taxing, handicap or not.  

For insight on the matter, I read Johanna Hedva's "Sick Woman Theory," an important work reimagining what we consider the political, to recognize the urge to exclude cripples (like myself) from activism. And it was good. Perhaps, I considered, the isolation comes from my fundamental otherness as my peers. It was comforting to think, the issue doesn’t lie within me, but the systemic powers that be. Still, I can't shake the feeling that I'm an imposter in these circles. And what good is trauma if you can't transmute it into a powerful sense of justice, a passion to fight for what is right, "speak truth to power," etc.?

A couple weeks ago, at the inauguration of President Joe Biden, youth poet laureate 22-year-old Amanda Gorman recites "The Hill We Climb," a call for bipartisan unity at last. Tears welled up in the eyes of the millions watching, but all I felt was envy, that I couldn't manage the same as she and that I couldn't feel the hair on my arms spring up.

Not to make this all about me, but I really hope I could feel something again someday. I really hope that I could be moved.