I once spent an afternoon at a friend’s home near Bath, England sat in a deep, flowered arm chair and enjoying a sun drenched view of the surrounding hills with my friend’s 82 year old father comparing our strokes like they were Vietnam war stories. I don’t think I had ever laughed so hard in my life, and I don’t think he had either. Not that strokes are funny. But it’s me. I can’t even have a stroke like a normal person, and looking back on it my stroke was pretty damn funny.
I woke up early with the kids and left my husband upstairs to sleep in a bit - I felt fine. No pain in my face, no flare pain, just my version of "normal". Sat in my comfy chair as usual and was eating a bowl of fresh fruit and soy yogurt watching cartoons with the kids (Scooby Doo is growing on me). My Chinese orange cat (we brought him over here from China and that little orange bastard has no appreciation!) sat at the top of the stairs screeching at me (like a devil cat), angry that he was being resolutely ignored. (It’s bad when your twins’ first proper phrase is “shut up Dermot”) I could see him out the corner of my eye but I was quite engrossed in the plight of Scooby so continued to ignore him until the poor postman arrived at the door and Dermot leapt out the window like an attack-cat determined to maul said postman to his deserving death. The postman is accustomed to our cat and managed to whack him mid-air with a package before any damage was done but his surprised screech made me swing my head far to the left in alarm – and my world immediately turned upside down.
Suddenly everything tilted and the room started spinning. I had heard people describe dizziness before like the room was spinning - but I never imagined it would be like this. It wouldn't stop and it spun and spun until it was just a blur of colours going round and round. The entire entertainment unit spun in my vision like it was a tumble dryer – I could barely make out different shapes in my own living room. I raised my left arm to my face and could just see a spinning blur of pale peach flesh mixed with the dark brown leather of my armchair. I couldn’t tell which way was up, I couldn’t see my children right in front of me.
I closed my eyes and clutched my head to grip the excruciating pain down the right side of my head and face - I'd never felt anything like it before, but assumed it was of course some new sort of sarc flare. It felt as though the side of my face had been torn open and shocked – I couldn’t feel my hands on my face, I could only feel the searing pain running down the right side of my face and neck.
I hit my head on the wall and realized that I had half flung myself out of my lazy boy chair to the right and into the wall, and I couldn't sit back up. I hung there, draped over the arm of my chair with my face mashed against the wall, clenching my eyes closed to stop the spinning – wishing just that the nausea and dizziness would stop, wishing it would all just stop.
My children were screaming and I yelled for my husband who came running down the stairs - he tells me that I was grey and violently clutching the chair, swaying to the right and then trying to correct myself. I don't remember seeing him, maybe I still had my eyes squeezed shut.
He wanted to call an ambulance, but I insisted that he and the kids just drive me to my regular hospital instead (Hammersmith, London), as surely this was just a new kind of flare and I would be able to go in and they will have my notes, I wouldn’t have to start at the beginning and explain what sarcoidosis is to more hospital staff. I also didn’t want to be a bother to the London ambulance service.
Neither of us knew that it was a stroke, we just thought it was a new, violent flare.
Cerebellum Strokes (as I've since found on Dr. Google) make up for only 2-6% of all strokes, so most people don't ever hear about it until they have one themselves. The strokes you see on TV and are warned about are the Cerebrum Strokes - facial droop, slurred speech, memory and cognitive impairment, etc.
Cerebellum Strokes affect your balance and motor functioning. Suddenly you cannot balance yourself and your limbs act like they have minds of their own. Neither my husband nor I had ever heard of a cerebellar stroke and we certainly didn’t know the signs. We didn’t know if we should call an ambulance or a priest for some sort of exorcism.
I looked like a crying, hysterical, belligerent drunk.
I couldn't balance or walk - my legs worked but I pitched so violently to the right that I couldn't stand or take a step on my own. I couldn't sit in a chair without flinging myself violently to the right and out onto the floor. Sitting in the front seat of the car I tried to touch my nose and instead whacked my husband in the face pretty hard. I just had no control. I don't remember if we talked on the way there - I just remember concentrating on breathing.
The right side of my face and neck was so, unbelievably cold. Like it had turned to ice and anything that touched it (my hand, a doctor's hand, the wind, anything) was so cold it burned. The air outside touching my face was unbearably cold but the right side of my face was also numb. I couldn’t feel a touch other than just a burning cold. There was a little bit of drooping, but not enough for me to notice (the doctors told me later).
Anyway, and here is where it gets ridiculous -
So we get to the hospital and my husband drives me to the front by the emergency (no stopping zone) and I tell him to let me out here, I’ll walk the couple meters to A&E and he and the kids can park and meet me in there, no biggie. He says okay and as I opened the car door and took a step toward the outside world I inadvertently launched myself out of the car face first into the back of a parked taxi. And yes, there was an audience.
There were cars behind us that couldn’t get through (no stopping zone) so poor Paul ran around the car to collect me (I'd since tried to right myself - possibly looked like I was making sweet sweet love to the back of the parked taxi) and hauled me over to the side of the hospital so I could hang on to the wall and wait for him to park, get the kids out of the car (they're just 2), put them in the stroller and come get me. Poor guy.
So he drives off and I'm left standing there, clutching the exterior of the hospital for dear life and only like, maybe 30 steps away from salvation - the A&E department. I’m so close I can hear the automatic doors opening and closing from just around the corner.
So I, being an unrelenting moron, had a go at making it there on my own.
It was like one step forward - fall face first into side of building. Notice random nails sticking out of side of building (what the hell?) and try to time my next step-face launch to be big enough to avoid the next nail. Success, and I did this about five more times before a passerby came running forward me to help me. I calmly explained (while crying, retching and clinging to the side of the spinning building like I’d lost all faith in gravity) that I was totally fine, my husband was just parking the car and he'll be right back - no worries.
The guy reluctantly left, to be replaced by a kind woman asking if I was in labour and needed help.
So not only was I in the midst of a severe stroke, my fatness was also being pointed out. Fantastic.
When the hospital security guy showed up (apparently a lot of people had reported a woman in distress outside the hospital) thankfully Paul did too. I think he gave the kids to the security guy and Paul carried me, flopping and flailing like a drunk epileptic into the hospital where the reception staff jumped up and got me a wheel chair (this turned out to not be so great, as the brakes weren't on and I continuously flung myself out of the wheelchair and onto the floor and other chairs, stroller and Paul as the wheelchair was kicked across the room. Another patient kindly put the brakes on it for me.)
Paul went to go park the car in the back (had to, damn parking wardens) and left the kids in their stroller with me in the emergency room - of course they called me first - I was the only one in the waiting room that looked as though I had been possessed by Satan himself and was doing everything but the upside down spider walk across the ceiling and screaming RED RUM.
But, I had the kids with me so, flailing, swaying and crying like a lunatic, asked them to please call the next person and wait until my husband returned - he should only be a minute.
He wasn't. I think he took like, 20 minutes. I literally thought I was going to die. I even called him to tell him as much. Well, I think it was him.
Somebody has a voicemail with me saying that I'm dying.
My two year old twins were brilliant - they just hung out in their stroller, gave me kisses, played with each other and told me with serious faces that I needed some medicine and maybe a glass of water. The other waiting room patients gave us a wide berth, and every one that was called before me asked the triage doctor if he was sure I couldn't go first - I declined and assured everyone that my husband was coming.
It became so intense that the receptionist stood in front of the double doors and watched for my husband, as soon as he saw him coming back he ran through the emergency doors and got a room ready for me - I went into triage, don't remember much aside from falling out of the chair a lot and the doctor getting annoyed that I wouldn't just "sit back and stay still". Dude, if I could do that I wouldn’t be here, thanks.
We were then called in and I thankfully was able to lay down. I don't remember much from this point on, but Paul was annoyed it was going so slowly, I think everyone saw my file and assumed it was a flare so that's what they were prepping for - infection tests, pain killers, getting a room ready in rheumatology - until a third doctor came in and saw the balance issues - we explained about the facial numbness and not just pain, and he left to get on the phone to Neurology at Charing Cross hospital because some things weren't adding up for him. My pupils were going wild and I was near narcoleptic when people were trying to speak to me.
Paul had to leave (he had the kids, and the parking wardens here are awful) and after the doctor assured him that regardless of what happened it looked like I would be admitted, he left. I was already in much better shape than an hour ago – surely that was a good sign.
That's when things went nuts.
The doctor rushed back and somebody grabbed my arm and put a cannula in, drew blood, pumped me full of something and ran off. He told me I was being transferred, just as an ambulance crew rocked up and put me onto a stretcher. Nobody said stroke and I didn't know what was going on - but I didn't care. I was too exhausted and kept falling asleep. They gave me something in my arm for sickness and suddenly I was in an ambulance, sirens wailing and everything as I apologized profusely to the bemused ambulance staff as I didn’t want to be a bother, were they sure the sirens were necessary? I remember feeling so angry as they kept me awake with a constant barrage of questions, asking me over and over my name and date of birth, where I lived and what city I was in. At one point I told them the wrong birthday and city just to be a smart ass and I was injected with something again, starting the rapid fire questioning over again as we whizzed through the streets of London with sirens blazing.
We got to Charing Cross and there was a team of about 8 doctors and nurses waiting at the door for me - still nobody said stroke. I just remember being asked to stand so they could see me walk, falling straight onto the floor and pitching to the right, then laying down on a bed with needles in both arms and people asking me questions as they ran with my bed down hallways and straight into an MRI machine.
I have no idea how or when I ended up in a hospital gown, these people are good.
Came out of the MRI and they were all in the hallway waiting for me - except the two specialists who were looking at the results right then. They came back a few minutes later and confirmed that I had had a severe cerebellum stroke due to a blood clot that has now passed, as I bizarrely have tears in both of the cervical arteries in my neck.
"That's it? Oh thank god. So, just a stroke? Not a flare, then? Oh thank god."
I don't think they are at all used to hearing the words "just a stroke", but laughed when they realised I have multi systemic sarcoidosis so yeah, to me this was "just a stroke".
Being the youngest person on a stroke ward by a good 40 years does have its advantages. For one, there was no shortage of conversation as my kindly ward-mates introduced themselves to me once every couple of hours and asked if I was there visiting my grandmother. One particularly delightful woman wandered around stark naked attached to machines and looking round for her cat. Another was delightfully irate with the nursing team for having re-arranged her bedroom and changed her linens to this “blue paper-like troff”. For the life of her she absolutely could not find her bedside table, either. Like I said, delightful!
However, being the victim of a violent stroke at the ripe old age of 32 ( I’d had a couple of TIA mini-strokes the year before) tends to make one cling to one’s independence a bit more than one should having just suffered a stroke.
I was brought up in a bed from the A&E to the stroke ward with very firm instructions not to stand, drink, eat or try to hold anything. Some practitioners would be with me soon. I could speak, though not particularly well. The right side of my face had drooped somewhat, causing my speech to slur. Add that to my Canadian accent and the nurses were having a pretty hard time understanding me. And I was not, under any circumstances whatsoever, to attempt to get out of bed or stand up. If I needed to use the bathroom (I did) ring the buzzer and a nurse will come to assist me (I resolved to never pee again).
A therapist came in to assess whether or not I could have a drink of water, and when you are not allowed to drink your body knows it and sets your throat on fire. 15 minutes of demonstrating that I could suck water off a sponge stick without choking myself, then I needed a break. I didn’t want a break, I just wanted the damn cup! That progressed to another agonizing 15 minutes of demonstrating the same thing, and then finally (finally!) proving that I could take tiny sips of water with her holding the cup for me. Why couldn’t I just hold the cup myself??? Frustrated and needing to prove that I was not a senile invalid I reached for the cup with my right hand and flipped over the bedside table (those things are not very sturdy!) sending the jug of water, charts and those stupid sponge sticks flying across the room.
Oh. That’s why.
My left arm and leg were fine, but my right arm and leg still had minds of their own with Hulk-like strength. Fascinated, I hushed the startled therapist and lifted my right arm, my eyes wide as it shot out to the side in a great sweeping arc. I had not told it to do that. I just wanted to lift it a little. Like an idiot I carefully raised my right arm up to look at my hand – the therapist watched as I punched myself in the face. As she gently starting talking about physical therapy and home help my denial faltered and I started to see this for what it was – my life had just changed. How would I brush my hair? Eat? Braid my daughters’ hair? Type? Work?? Wait, was this permanent????
A healthcare assistant arrived with a walker (a walker?!?!) to leave by my bed so they can train me to use it over the next few days and I started hyperventilating so badly that a nurse came in and upped my meds. This was real. This wasn’t funny. This was happening and I couldn’t change it back. I began to cry, quietly once the nurses and therapist had left. I thought over and over again that if I could just re-live that moment and not look at the cat. If I could just not have torn my stupid brainstem in the first place. If I could just go back to 8:30am when I was sitting with my kids watching cartoons and with full control over all of my limbs. If only if only if only.
Right then. Crying about it isn’t fixing anything and in all honesty this is totally manageable – and I had to pee. I had to pee quite badly, and there was no way I was going to use a bedpan, not after the great bedpan incident of 2011. Nor was I going to make some poor nurses carry me to the bathroom to watch me pee. I’m a strong, resilient 32 year old woman for god’s sake – and I at least had one good arm and one good leg. There’s even a stupid metal walker if I need to use it.
Alright, I can do this. I just need to break it into steps, that’s all. Quick steps, as I’m close to wetting myself (which is still preferable to that bedpan idea. Cripes).
Step 1 – sit up.
Okay, this is easy peasy. The bed can do that for me. Ah yes, don’t grab control with right hand- I’ve flung it off the bed and out of reach. Fantastic. Must remember, am now left-handed. Right arm was still swinging wildly in the air so I thought it best to just let it rest and have my left arm to all the work. My stomach muscles were useless but it I’m honest they kind of have been for awhile, so I strained to push myself up with my left arm – though I was still wildly pitching to the right. I started to question whether or not this was a good idea but my bladder convinced me to keep going. I flopped over to the side of the bed, understanding for the first time just how useless and out of control my right leg really was as I tried to raise it up and did an inadvertent can-can kick high up in the air, sure I would feel the strain of that one later. No matter, the bathroom was now in sight, a mere ten or so steps away from the bed. I was sitting up, facing the right way and I had caught my breath. I was ready, my right arm hanging dead at my side and no feeling in my right leg.
Step 2 – stand
Just stand up. I’ve done it countless times before, just stand up. Nothing happened, I was going to have to build up some momentum first. Gripping the foot rail with my left hand I began to rock back and forth (and right), back and forth (and right, dammit) back and forth and UP AND RIGHT, staying upright only by the death grip I had on the foot rail. Why was I still pitching to the bloody right?? Oh god, the gravity and momentum had put more pressure on my bladder. This had become critical – I had to make a move.
Step 3 – walk
Yeah this was not going to happen on my own – this whole useless right leg and directional violence thing was not working out in my favor. I was going to have to use the walker – and managed to fling my right arm over to it, hook my wrist over the hand-bar and drag it over to myself while still gripping the bed for dear life, swaying around like a drunken hobo. It must have been quite a sight. I heard the familiar squeak of nursing sneakers pushing a cart down the hall and I froze like a deer in headlights, eyes wide and immobile – breathing as quietly as possible and terrified to move a muscle – surely if I was spotted trying to get up they would put a stop to my attempt and the dreaded bed pan would be brought out. Or worse, they’d carry me to the bathroom in some sort of mechanical disabled swing of shame. Like a German sex swing but with nefarious medical intentions like being lowered onto a toilet with an audience and a remote, or for bathing obese people with a hose suspended over a blow up paddling pool. I stood there frozen and alert as the nurse walked past – staying perfectly still so as not to be seen, like you’re supposed to do if stalked by a velociraptor. The moment she passed my door, not even glancing my way I seized my chance and made a break for the bathroom, clinging to the walker and making a tentative step forward with my right leg.
Damn stroke. I’d forgotten how super-hero strong my right leg now was and instead of stepping forward I had can-can kicked the walker, and myself, straight ahead. The walker shot out into the door and spun out into the hall, clanging around as it went and I fell to the floor flat on my face and splayed out like a starfish. That noise was sure to attract someone, I was nearly out of time! So I dragged myself across the floor, face down, inch by inch pulling with my left arm and pushing with my leg in a desperate army crawl toward the bathroom, so close yet so far – making it to the door only to find that my right arm was too useless to reach up and grasp the door handle.
Step 4 – humiliate self
When the nurses arrived a minute later with my dented walker they found me, lying face down on the floor by the bathroom having peed myself.
It was still better than risking a bedpan.
The tears in my arteries happened as a result of my medications weakening my system overall, including the arteries in my neck. About two months earlier I had had a violent coughing fit and a sudden searing pain in the back of my neck. I thought I had pulled a muscle by coughing. I even went to my GP after a few days of no improvement, but even she figured it was a pulled muscle. These tears are very rare, even more so to have them in both arteries, and are typically caused by serious car or sporting accidents and nearly impossible to diagnose without an MRI or the like. I accepted that it was probably just a pulled muscle and let it be.
I didn’t want to look like a hypochondriac, after all.