My Stroke Story

It seems a fitting a place as any to start, as they do with any guest in the podcast: With my stroke story. But first a thought about stroke stories themselves. There’s an undeniable solace in finding parallel stories to your own, especially when it comes to traumatic events. My wife Serena and I had our daughter Junie six months ago, and the number of mothers (and women hoping to be mothers) I’ve spoken to who have said to me: “I love hearing birth stories, because every one is different.” Of course, it’s more than just variety that interests them—these stories recall our own and help us knit our own to the stories of others, and so we feel understood and known, and a part of something greater. As an outsider, I’ve always found the phenomenon interesting: Of someone or their loved one being afflicted by a rare disease, and then they become an advocate for its awareness. I recently read The Invisible Kingdom by Meghan O’Rourke, her own story with chronic illness and auto-immune disease, and she used a phrase that’s since been germinating in my mind: “unseen diseases are camouflaged grief.” When others can’t see our affliction, when it’s invisible to the onlooker, we’re forced to carry the grief within us, and even while in the midst of it we’re forced to become our own advocate, because our grief doesn’t then visibly communicate itself. All this is to say that our stories beg to be told, and by more than what’s written on our bodies; with strokes, there are always scars on our minds, hearts and souls that can even be invisible to ourselves, but that demand to be shared and woven into the stories of others.

My stroke story started fairly innocuously, as far as stroke stories go. Our family was getting ready for church (where I’m one of the pastors), and we were running a little bit late (which wasn’t unusual for us). We left at about 8:30am, I carried Junie’s capsule into the car. I sat in the passenger seat and my wife drove. At about 8:50am, we were most of the way to church, driving along the Riverside Expressway, and I saw that one of the other pastors messaged the staff chat about a road closure. I said to my wife: “Which one’s Blamey Street?” I was holding my phone with my right hand, and I went to lift my left hand to check Google Maps. But I couldn’t move it. Serena was speaking and I interrupted with a startled: “Wait, what? I can’t move my arm.” My first thought, and hers, was that it must be like when I’ve slept on it, and it just went temporarily dead. But it had just been by my side, and there was no movement at all. As I was describing it to her, the left side of my face started to fall and my speech became slurred. I said: “Can you take me to hospital?” Providentially, there was a traffic jam ahead, but Serena pulled off just before the exit, and we were five minutes from the RBWH. As we were driving there, my leg went completely dead as well. I had no idea what was happening to me, but I remember saying to Serena, even then, even though I’m only 34 years old: “I think it’s a stroke.” Serena pulled up outside emergency and ran in to get help. In my stupidity (although, to be fair, I was in the midst of a brain injury) I wondered whether I could get out of the car and stand up. I opened the passenger door with my right hand, lifted my left leg onto the sidewalk, and tried to stand, but toppled over onto the ground. Within a few seconds it felt like half of the doctors from the hospital ran out, lifted me onto a stretcher and wheeled me into emergency. I had a CT scan, but nothing showed up. Although, considering my age and symptoms, they were fairly sure enough that I had a clotting stroke and not a hemorrhagic stroke, and so they asked me to sign a form to administer thrombolysis, with the words: “I just have to tell you that there’s a two-percent chance that this will make you get worse, and there’s a one-percent chance that you’ll die, but considering your symptoms, we think that this is absolutely your best chance.” Half an hour previously I was changing songs on our Spotify, and nothing was out of the ordinary. Now, with the left side of my body completely paralysed, with my wife and six-month old daughter by my side, I was signing a form with the (however remote) consideration of death being on the table. I signed it, they administered the lysis, and we waited. It was understandable, but every fifteen minutes or so, a nurse would ask me to move my arms and legs as much as I could, and smile as much as I could, and for the first five hours it was completely a one-sided affair. Serena put Junie on my lap, I couldn’t hold her or smile at her, and I was terrified and weeping at the thought of never being able to do either again. But around 2pm, with a lot of effort, I could kick my left leg off the bed, even if all of the movement was from the thigh. Then within another half-hour, I could lift my left thumb a centimetre or so off of my fist. By dinner-time I could lift my left arm onto the bed railing. But when they transferred me to the acute care stroke ward at around 9pm, they had to lift me into the bed. It was one of the worst nights I’ve had—separated from my family, in the dark of the stroke ward, with most of my left side still offline. I’d be surprised if I slept an hour. But throughout the night, it felt like sweet jolts were intermittently shooting down my arm and leg. And by morning, without even getting up, I knew: “I can walk again.” And with a nurse’s assistance I did walk to the bathroom and back. Of course, I was wobbly and weak on my feet, but from having nothing 24 hours ago, I was ecstatic that I could walk a little bit already. After an MRI, I learned that I’d had a lacunar infarct in my basal ganglia. None of those words meant anything at the time, but now each is laced with explanatory power and significance. Over the six days that I was in hospital, I recovered so rapidly that they were happy for me to go home, if with physio, OT and speechie follow-up.

But back to my first thought: If you saw me now, aside from me walking a bit slowly and having a bit of a pegleg, you probably wouldn’t notice that there was anything wrong with me, let alone that I’d suffered a traumatic brain injury less than six weeks ago. But that brings the words of Meghan O’Rourke back to my mind: “camouflaged grief”. In the middle of this dark cloud of my mind, I‘ve noticed memory issues, intermittent, extreme fatigue, and a lingering note of melancholy. But they’re all invisible, camouflaged from the world, and so if anyone’s to understand them, even through the mental fog, I need to grasp at articulation, lest the griefs of my body become silent to the world. Of course, like any stroke story, there are a thousand smaller stories within it, of testing and friendships and fears and recovery and setbacks and reckoning with my identity on the other side of the stroke. But for now, that’s where it all started.