When I Lost My Words
A year ago today, I had a terrifying and unforgettable experience. The scene was typical, my husband and I were talking in the car on the way home from work, but in a split-second I felt a wave of heavy confusion enveloping my head from behind and my next words exited as gibberish. On second thought, they were more like sounds as they didn’t resemble the words that were in my brain, or words from the English language, for that matter. I tried to say something again. Gibberish. Intense panic washed over me and my large eyes bulged as I as I thought I was having a stroke, which is my biggest medical fear. In my head I am saying, “stroke, stroke, stroke, oh my god I am a prisoner in my own head, help! I will never be able to communicate again!” It was like my thoughts were being translated by my mouth into an unintelligible foreign vocabulary without my knowledge or permission. My brain and body were out of sync and out of control. In those moments it seemed like the essence of my soul was trapped somewhere inside my human form, which I was unable to access, and I was acutely aware for every frightening second of it. It was like being outside of my body and watching myself unravel in a frenzy.
Manically, I jumped up and down in my seat, waved my arms and motioned to my husband that I needed help because coherent words like “hospital” were failing me. I managed to blurt out “Jefferson! Now! Low-sh, low-sh!” “Low-sh” was how my brain and mouth translated the word “left” at that moment. “Left” was the direction of Jefferson Hospital which was 3 minutes away from where we were on Broad Street in Philadelphia. It is my “safe place” as that is where I had life-saving and successful brain surgery 8 years before this moment. Hoping he understood my direction, I gave up trying to speak and scrambled to get a handle on what was happening by performing the “stroke test” on myself. I flung the mirror down from the visor; S-smiled, made sure my mouth was even on both sides, T-talk, tried to say a complete sentence. Fail. R-raised both hands to assess a potential problem with one side of my brain, I was fine there. As my heart raced and I continued to freak out I tried to write down a message so my husband could understand what I thought was happening. “Stoke” stared back at me on the tissue box. I wrote “stoke” on the first surface I could find and I couldn’t figure out why it looked weird. Why I couldn’t remember the letter “r”? What the hell was happening to me?!
Dan calmly drove to the ER.
Earlier in the day, I got one of those pesky ocular migraines. This sounds worse than it is, but in my experience, this means part of my vision disappears out of one eye and I can’t read the beginnings or ends of words. This presents itself for about 10 minutes, leaving me unable to work or read so I usually sit down and close my eyes. Eventually the vision restores itself in the form of flashing lights and wiggly lines and is followed by a mild headache, which I rarely treat with an over-the-counter medicine and just “tough it out”. I’ve had about 10 of these in my whole life. They occurred during the years after my brain surgery so naturally the first few times I had these migraines I was concerned that I had a tumor recurrence or another AVM. Dutifully, I’ve had my brain scanned, eyes examined and tests run which led to normal and unremarkable results regarding brain health. Yes, I just called my brain unremarkable. Therefore, I don’t worry about ocular migraines when they happen. They’re rather infrequent and not debilitating. But this speech abnormality was a big goddamn deal, HELP!
Words may have failed me, but my feet did not and I ran into the ER to be seen. Seven minutes had elapsed and at this point I was able to say (OK, maybe I screamed), “I think I’m having a stroke!” If there’s one thing I know about strokes, as I’ve witnessed both my father and mother have mini-strokes in front of me, not at the same time, thank goodness, it’s that you should seek immediate medical attention as it will help your chances of restoring any damage caused by the stroke. Again, it’s my worst nightmare so I was acting really, really fast. My husband, I must say, remained focused and drove carefully and swiftly to the ER. Bonus points because he understood enough gibberish to get me where I needed to be!
Blood pressure pumps.
Blood being drawn.
Flashing lights in my eyes.
Heart monitor.
It seemed like a dozen people swarmed around me. They were checking for heart attack, seizure and stroke. My speech was returning a bit, but I still could not access words and phrases like, “accessing words”. When trying to explain that I couldn’t access words, I’d say things like, “can’t get to that part of my brain”, and “can’t remember his name” referring to my brain surgeon at the hospital, James Evans, who is my real-life hero. Although it was positive that my verbal skills were still somewhat intact and my speech was now understandable, all I could focus on was the question of what the rest of my life would be like with only half of a vocabulary and hundreds of vanished memories. It made me deeply sad that my once active brain that held so many thoughts, with so much potential and many connections to make, and dozens of stories to tell, had an uncertain future. What comforted me most was knowing I had a dedicated, loving and now multilingual husband who would help me through the absolute worst and has already done so.
I stayed the night and had an MRI an EEG, EKG and the gamut of blood work was ordered. A hospital aide wheeled me along various familiar hallways to the MRI department. In case you don’t know, an MRI is a magnetic imaging test performed while you lie perfectly still in a tube that scans your head in a series of deafening clicks, bangs and beeps. It is the loudest test you can imagine and it is impossible to relax. At 12:30 am, still laying there on my wheely bed in a hallway for an hour, an employee came by and said the hospital was looking for me. The original aide took me to CAT scan, not MRI and the hospital thought I was lost. Oh HAHA! When I finally arrived at the right place, the MRI the tech told me I looked familiar. She was right. We had met about a dozen times before. Bring the noise!
I think about this song every time I get an MRI, this is what it sounds like to me: https://www.youtube.com/watch?v=pmGNo8RL5kM (video for Yeah Yeah Yeahs “Zero”)
After a long day and night, and to my relief and delight, I am fortunate to say all tests came back normal with no sign of heart disease or seizure and my brain was not (further) damaged from the incident. I’m pleased to have been told my cholesterol levels were the “best on the floor”, which is what I strive for as I eat a plant-based diet and exercise regularly as to protect myself from an actual stroke.
So what was this harrowing experience that led to an overnight hospital stay and other minor unpleasantries? It was a complex migraine with aphasia. If the word aphasia is new to you, it deals with speech. Feel free to Google this. I did and found it enormously helpful. Searching this led me to a clip I had seen before of a news reporter having an experience very similar to mine, live on camera. You can watch it here: https://www.youtube.com/watch?v=IG7NuH5QTdE (news reporter speaking gibberish from aphasia)
It was a busy week for me and upon review of my eating and lifestyle habits I’ll surmise that long work hours combined with long workouts might’ve contributed to a depletion of sorts that triggered my migraine.
This experience shook me, but made me want to share information and raise awareness about this seemingly uncommon condition in the chance you or loved ones may come across it. If this happens to me again I know it’ll resolve and I won’t rush to the ER thinking I’m having a stroke. But another side effect of this is inspiration to communicate more. It provoked me to let a lot more out of my active head and into the world through words in story form and through conversation.
The ability to communicate freely and share thoughts is a gift I will never take for granted.
I celebrate my cerebellum and nod to my neurons and neurotransmitters that are firing in my brain as I write this.
How to identify a Stroke, a link to the “stroke test” I performed on myself: https://www.healthcentral.com/article/stroke-remember-the-first-three-letters-s-t-r
