My blood pressure goes up and down a lot throughout the day. The word for it is delicious; labile. The word makes rounds of my entire mouth. Tongue to my top teeth, springing off my palate to make room for the ‘a’, tongue to the bottom, lips together, tongue to the top again. Say it back to back and you feel labile’s pulse.
When I first saw doctors for high blood pressure I kept hearing it described as the “the silent killer” because of how commonly people have it and feel no different. But I felt different, that’s why I was seeing a doctor. Then they found the dissection, the occlusions, the tiny strokes, and the sensations coalesced into a narrative. This is what a dissection feels like.
Now, five months of healing out, my blood pressure is a full body wave of sensation, and it is not a dissection. Sometimes, I can even distinguish between low and high. At the moment, it’s high; the pulsing is higher in my body; head and neck, a squeeze from the inside, the dizzy spells are explosive, I shake. My hypertension specialist gave me drugs for the breakout sensations over the baseline drugs to reign in the highs and lows. Which work pretty well until right before my period when, for a week, I have to sleep sitting up and paint all day to stay relaxed.
When my heart fluctuates, it feels like my 'battery' is draining suddenly. I tell my cardiologist that sometimes I get dizzy in sync with my blood pressure changing. But sometimes it’s in sync with my heart rate being irregular, which can happen when my bp is fine. So do I tell him, or my hypertension doctor? I mean, I tell them both, but I’m saying I don’t know in which compartment the sensations go. They bleed into each other like watercolour when you should paint went-on-dry, but you’re impatient and you paint wet-on-wet without talent and it shows. Watercolour, a skill I clumsily practice when I come home from a failed walk at the park with a picture of tree reflections in a puddle and the thought, ‘I could paint that’. I say 'failed' walk because my battery died on the first lap. A group of old men were doing laps the same way as me, going from bench to bench to rest.
I tell my migraine specialist that the dizziness confounded me until I had a bit of head pain. In the past the pain was so gargantuan, it pulsed and thumped and throbbed, it moved around in my head so I didn’t know that I was dizzy, I thought the pain itself was in motion. Without the pain, the motion is abstract. I tell an er doc, I feel like I’m moving when I’m not, sometimes head first, sometimes by chest. But also my heart is trilling and my battery is powering down, and he shakes his head with me because we just don't know which box it goes in. "Its frustrating for all of us because I won't be able to give you an answer,"
"'You're not dying' will do," I say.
He perks up, "oh I can tell you right now, you're not dying." And then adds, "do you want a CT?" I've had seven since march, and two MRIs.
I shake my head, "Lets save the radiation exposure for another time," we're at the point of comparing peace of mind against risk of cancer.
"You're still young," he agrees, but we don't take CT off the table until the exact moment of discharge.
"I'm sorry for the frustration," I say.
"You were right to come in. We're glad we found nothing. You're an easy patient, we're happy to have you. We want you to come back if you feel it's getting worse," They all say this when I apologize, which I do every time I come for the sake of my sensations and they find nothing they can treat or "slam dunk" identify.
I call them "my sensations." it's as if they were a colour palette. They paint me, however. These are autonomic operations, I have no control, I'm not even supposed to sense them so directly. I intrude on their regulatory functions with accusation, but it's fear talking. I understand the system saved my life, it didn't choose to be disregulated, and it's still fighting to set me back to right. I would be resting and receiving its support, but somehow I got added to the chat room without anyone realizing I shouldn't be here. I eavesdrop on the process. It's a messy fight for equilibrium. And on the whole, it’s been pretty miraculous in results. But something about the dissection tore more than the fabric of my artery, it tore a portal of perception and now I go along for the blood pressure ride with minute accuracy. I'm behind the curtain, my eyes wide at the chaos.
"Get her out of here!" someone is supposed to shout, as I'm ushered back in front of the curtain to be spared the worst. But that doesn't happen. I bear unbroken witness to my body’s secret workings.
I've always been sensitive on the outside. I draw the world into me through my senses. And now I am drawing the world back out. I might get crushed in the middle if the system doesn't find its footing soon.
The hypertension specialist already knew that people with paralysis can have autonomic dysfunction without me having to mention it to him. He told me a few follow ups back that it can change with age. "We'll keep an eye on it," he says. But is this what he meant? Is that what these sensations are? What are we keeping an eye out for? This amount of feeling is already so beyond what I would expect, is this what it will feel like when it's 'ok'? Am I safe?
“Just keep listening to your body, trust what it tells you, you know it best,” they all say that, too. Which makes my throat close up because I don't know it best at all. I used to know it exquisitely and now I can feel it, but I don’t know it.
"I was promised a silent killer," I said facetiously to my hypertension specialist at our last appointment.
"We're not going to let it kill you," he says earnestly, typing instructions to the pharmacy. Then adds, "silently or loudly, we've got this."
The cardiologist says, "we'll keep an eye on it," too. The irregular heartbeats, that is. He likes what the hypertension specialist is doing and just wants to keep an eye on the cardiac events in case they branch off into something of their own.
As he calmly and swiftly empties a vial of anesthetic into my skull and face and neck, the headache specialist suggests magnesium and vitamin b may help reduce some of the sensations --if they are migraine/hormone related. The hypertension specialist agrees that's a great idea, as he adjusts my pharmacy components again. Components that I store in a velvet makeup bag that I keep in bed on a vintage tray with a pitcher of water, a tiny humidifier and a bag of peanut butter m&ms.
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