Pre-stent and post-stent images of blood flow (note the extremely limited blood flow – parts of the artery are nearly separated) in image 1 compared to image 2).
I haven’t posted in quite a while. Besides the regular 2020 pandemic reasons, I also experienced a major life event on June 25, 2020 – a stroke in my left middle carotid artery.
My difficulties started in early June when I experienced a migraine – unusual for me – and a few days later lost control of two fingers on my right hand for a few minutes. I was scared and shaken but people I trust said it was likely a pinched nerve – and the symptoms resolved. I attributed the numbness to being on the computer for too long.
The symptoms recurred – but less severely through that month. I decided to get a chiropractic adjustment, hoping that aligning my neck would solve the problem. It did not.
The night prior to the stroke I felt tired. I assumed it was due to running prescriptions from the hospital to the outdoor pharmacy in 100 degree weather. As I prepared to sleep, my girlfriend Sara told me on the phone that I was probably just tired. I agreed though I felt like I was having trouble finding my words. Sleep seemed like my best option. I’m so glad I woke up the next day.
I intended to go to my job at the hospital as scheduled. I needed to get my work email running on my phone, so despite having trouble finding words, I worked with an IT representative to get my email working.
As I contemplated getting dressed for work I realized I was feeling “off” and my word finding was getting more difficult. I told my roommate I was having trouble finding my words and asked her to take me to the ER. She didn’t hesitate. I packed a phone charger and a few necessities in my work bag – thinking I’d probably be waiting in the ER for a while.
I arrived and was whisked into a room, given an echocardiogram, a Covid test, and taken for a CT scan. An MRI followed immediately afterward and I began to realize something was seriously wrong. I was having more trouble speaking and couldn’t get my written answers on the required paperwork to fit into the tiny spaces on the forms. My signature was also weirdly squiggly.
The ER doctor informed me my carotid artery was narrowed and I’d need to be transferred from the Nampa ER to the Boise hospital to see a specialist. I boarded an ambulance for the half hour ride.
The EMTs brought me directly to a dark room filled with imaging equipment. I didn’t understand that I was in a surgical suite. Dr. Perl explained they were going to do an angioplasty through an incision in my groin and place a stent in my brain if the angioplasty failed to resolve the issue.
I struggled to tell him, as my words were difficult to speak, not to tell my kids (I didn’t want to alarm them) but instead to contact my cousin Liz in Boise and my girlfriend Sara in Portland. I had trouble getting Dr. Perl to understand that my cousin was listed as Lizard in my phone. He called her Lizard throughout their conversations that day – which we later found hilarious.
I was awake during surgery though mildly sedated. I had to be able to hold my breath when they took images. My head was taped down but I was not restrained. I tried to keep myself calm and breathing regularly – panic would be counterproductive.
They inserted the apparatus through my right groin which was a bit painful but felt more like extreme pressure. Every time they took an image I experienced horizontal flashes like lightning from left to right in my visual field. Once Dr. Perl hit my optic nerve which caused my entire field of vision to light up. I said “wow!” He said “sorry, that was me.”
Angioplasty was not enough so they placed a 2mm x 8mm cobalt chromium stent. Dr. Perl looked extremely worried when I made a sound in response to the stent placement. After he finished he said “well it wasn’t your day to meet the celestial beings.” My speech immediately improved.
What I didn’t know is that Dr. Perl told Sara he did not expect me to survive. Blood flow was extremely restricted. I wish I could have spared Sara and Liz and all my loved ones the worry this caused.
I spent one night in the ICU and one additional night before being released. Everyone was amazed that I was so “intact.” I even joked when Dr. Perl asked me “where are you?” and I replied “the hospital.” He asked “which one?” and I replied “not St Al’s” (the competing hospital) which made at least one intern laugh.
When I was first in the ICU, Dr Perl told me the stroke was unavoidable. I was wired without the usual backup of connected arteries in the back of my skull. I was just born that way. As Dr. Perl turned to leave I said “thank you for saving my life.” He replied “it’s what we do. And thank you.” I think he smiled under his mask.
Every time I was asked (every hour on the hour the first night) “do you know what happened to you?” I would reply “I had a fucking stroke.” It has taken months for that reality to really sink in.
Assessment of my condition revealed that I did not require additional hospitalization or transfer to a care facility and could be released. Sara and Liz were waiting for me on the morning of the 27th. I climbed into Sara’s SUV with the an admonition for quiet darkness, walking only if I wanted to, no driving, no sex, and no heavy lifting. My daughter drove up with her husband and cat from San Francisco. It was lovely to see them and to have them witness my nerdy marriage proposal to Sara (I had prepared the proposal prior to the stroke as I was planning to propose over the 4th of July weekend).
That was over five months ago. Sara has cared for me through emotional lability, sensory overload, doctor appointments, moving me to Portland, and my debilitating fatigue with exceptional grace and kindness. I’m so grateful to Sara, to my friends and family, and to everyone who has contributed to my GoFundMe.
I’m no longer neurotypical. The “me” I was is not the woman I am now. I’m unable to work set hours because of the unpredictable fatigue – which is super difficult for a former over-achiever. I am coming to believe that I might matter even if I’m not productive. What an idea, eh? I get frustrated by my limits, and am grateful to be alive.
It remains difficult to be so seemingly “normal” when I am, in fact, not. I’ve been trying to navigate these changes through making art, including this map of my stroke.
Just after surgery Dr. Perl showed me images of my brain on his phone (the images at the beginning of this post). The next morning I asked him if he’d be willing to share the “super sexy pictures of my brain” and he texted me the images. This map of my stroke is based on those images:
Red areas show blood flow pre-stent. The small sliver of red in the center of the collapse shows the bridge of blood that kept me alive. Blue areas did not experience flow during the stroke. They are a catalogue of damage.
Making the map allowed the reality – that I had a stroke and damage was done – to really sink in. Once I saw this I could begin to grieve these changes more deeply I entered a deeper phase of healing. I’m planning to make a series of 3D maps using glass skulls to show how my brain feels different.
Progress is slow as my recovery demands a lot of sleep and I cannot work on projects for extended periods. I’m alive and emerging from the liminal space between who I was and who I am becoming.
For additional info see the GoFundMe (https://gf.me/u/yj2gqz) which contains my initial description of the stroke and monthly updates. I hope to post more art soon.
Thanks for reading.