Last night I watched a movie with Kasper. I was perfectly fine the entire movie and then suddenly it felt like my head was in a vice. Things suddenly smelled different and I became woozy. Kasper let me lay my head in his lap and he rubbed it for me. While his fingers felt along the ridges of the cranial incision lines of the former [?] bone flap where I was feeling the most discomfort, I tried to examine the exact sensations I was feeling. I know it sounds stupid, I know when things sound crazy but this is why I have this blog. I’m tired of going to my support group with questions and always being referred to the search bar for archived convos or being told “go to your doctor” or worse: being made to feel as though I am crazy and experience some of the weirdest shit ever. I’m a weird person, I totally get that but I find myself believing that I am simply more aware of my body and it’s pieces (even the ones I can’t feel too well) whereas most people don’t pay any kind of attention at all to the natural voice of their bodies. Some people have strokes with no ‘known’ prior warnings. Well I had warnings but I eventually chose to ignore them because I was tired of people making me feel crazy. I knew I wasn’t crazy even though I sure felt it at times but I also knew I couldn’t afford to take the added ridicule from those around me. I kept things to myself and then one day BAM I woke up on the floor with no real idea as to what was actually happening to me.
When something really bad happens to someone people have all sorts of ways to cope with them or ignore them or whatever. My family, we like to sit and stew in the broth of our shock soup. From the start, the moment my mom and sister arrived at my bedside days after my stroke, the talking began. Now I’m not sure if I told this story on this blog or not but there is a story that had followed me from the living room floor of the house I lived in at the age of 13, until I was 27 and in a muscular/skeletal rehab waiting to learn to walk again. This story, it wasn’t mentioned right away after my stroke. No one wanted to bring it up because it was humorously unnatural and it filled my mom with guilt. She had tortured me with this story my whole teenage and young adult life. Any time I had a boyfriend or a potential new boyfriend, she would bring up this embarrassing story as if to warn this guy of who or what exactly he was dealing with.
I have no real idea of how to tell this story because I know how I have always felt about it regardless of what I’ve said in the past or how I may have reacted every time my mom told it. There’s no denying the truth in it because the story has always been there and even though it has been proven that I am not crazy when it comes to this story, I still feel awkward telling it.
When I was roughly 13 or 14, I sat in the living room with my family watching TV and smoking a joint or a bowl or whatever. My mom and step dad smoked with my older sis and me every night and usually multiple times throughout the day. It was not strange for me to sit there and get caught completely zoned out. Even before I started smoking pot I was very easily distracted and always sort of only ‘half there.’ Because I was smoking pot, I never thought twice about any of my zone-outs. Sometimes it would happen mid-sentence or I would snap back in with a sense of having just “not been” somewhere. I thought it was all very normal when smoking, but this time, on this night, while I sat on the floor between my sister who sat in the chair to my left and my step dad who sat on the couch to my right, I had this strong sense of being pulled inward and back. I cannot explain it at all in any other way than that.
I’m 30 years old, this was over 15 years ago and I still remember the revelation of the flash and the emotions that accompanied it that hit me that night and I, nor anyone else in that room, ever forgot my words following my flashing experience. How I know this is in the simple fact that those people in that room continued to hold this event over my head and taunt me with it until we heard a neurosurgeon repeat those same exact words to me shortly after I had a serious cerebral hemorrhage.
As I was thrown aback as if something had given me an ethereal thwack in the forehead, I had a mysterious vision *insert Twilight theme music here* The flash was quick but forever imprinted in my memory. I shouted out, probably something dimwitted like “woah.” And then I said the first half of my only two real announced admissions of “the event:”
I just saw my brain.
Anyone in a room witnessing that would, or should, have the same reaction my family had. I remember feeling the heat in my cheeks and the tingles in my head. I was immediately embarrassed and filled with shame. Those words would surely follow me the strongest throughout the next decade and a half but it was the remaining half of my recounting of the so-called event that would haunt everyone else after a decade and a half of dismissing me as crazy, delusional and more than just partially aloof.
Someone asked amongst the noiseless laughter only trained smokers can control so professionally (which is to say without peeing themselves and still being able to say words) “what did it look like?” Who could blame them for treating me so poorly over all of this? I never did. Over the years I found myself laughing with them while knowing I wasn’t crazy, but I was very aware of exactly how insane it all sounded and that was the most embarrassing part. I tried to say it never happened once but my family would never let me get away with that.
In response to the nagging question of what did my brain look like, I had nothing to offer except exactly what I saw.
It just looked like a tangle of red and blue wires.
The story got old for me and when it was brought up I would dismiss it, ignoring it and hopefully avoiding the whole repetitive business of embarrassing me altogether. I knew what I saw, I knew what I felt, I knew I wasn’t crazy. I knew it sounded crazy. I think admitting that it sounded crazy proved I wasn’t crazy to begin with. I’d be a real idiot not to know you can’t just smoke a joint and see your brain. I’ve been with Kasper for 8 years now. Around 8 years ago my mom and sister stopped telling about the time Kt saw her brain. He already knew the story and thought it was cute. Why he thought it was cute I shall never know. Maybe he has a taste for crazy.
About 13 or so years after my ludicrous outburst, declaring to my family that I saw my brain, this tangled mass of red and blue wires resting somewhere comfortably inside my skull, I lay in a Neuro ICU with the inability to move half of my body. My clothes had been cut from me and things were inserted into my body to try to figure out what happened to me. The most likely cause was an aneurysm. I was pregnant, after all. You are at a higher risk for aneurysmal ruptures when you’re pregnant. It seemed very logical. My aunt passed away in her sleep because of a ruptured aneurysm. That had to be it; maybe they were even connected.
Hours later, I laid in a hospital bed listening to my doctor give me a diagnosis. I had an AVM.
“But what’s an AVM?”
Now, because of this story that once haunted me and now haunts my mother to a much tougher degree, combined with a few other dismissals I have noted from my past after I had this ugly thing blow up in my head, I try my best not to dismiss potential signs, symptoms and possible warnings.
And now I sit and wonder about the indecipherable pain and discomfort I have been in since last night. I’m hoping it’s just the weather. Humidity or something blowing in that the Weather Channel has yet to pick up on and alert me of. It feels like the piece of my skull that had been removed for the surgery is swelling; there is so much pressure. I don’t think I would be so worried if it wasn’t for the neck pain. Neck pain always accompanied my headaches just before my stroke. It was never-ending but everyone kept saying it was a sign of tension headaches…so I dismissed them even though I felt the fact the pain was always in the same locations (right side f my head and neck) meant I had a brain tumor…turned out it was just an AVM (right side of my head).
I have yet to find any real answer to that flashing vision I had where I infamously “saw my brain.” The only logical thing I can assume is that it was some sort of simple partial seizure with a wild hallucination. My last neurologist said I exhibited signs of petite seizures with my descriptions of zoning out. They have become worse since the stroke and craniotomy but I am taking anticonvulsants. Who knows. Doctors don’t give straight answers anymore; they are too paranoid of lawsuits.