How a Stroke Made Me a Warrior (and a Little Bit of a Zombie)

I had a stroke exactly one year ago today and what a year it has been. It’s a miracle I was only briefly paralyzed because my stroke was severe. Technically, I had two strokes simultaneously. The first, cerebral venous sinus thrombosis aka CVST where major veins that drain the brain of deoxygenated blood were fully clotted. The second, an arterial ischemic in my mid cerebral artery that damaged 3 out of 4 arms of my basal ganglia. Both happened in my left hemisphere and presented initially as arm cramping, seeing stars, right leg weakness and confusion. I was alone in my office doing yoga when it happened. 

My first trip to the ER was uneventful. I walked in, told the nurse, “I think I just had a stroke,” and was assessed by another nurse and a physician's assistant, who I thought was a doctor at the time. While waiting in a wing of the waiting room, staff took my blood and blood pressure, tested my arms and legs for strength differences, and sent me home with a diagnosis of arm cramping and anxiety. I went home feeling stunned, dissociated, scared, and confused. The next day I went back to work and, in hindsight, continued to have stroke symptoms: exhaustion, headache that wouldn’t resolve with Ibuprofen (CVST symptom), difficulty maintaining focus, inability to read or complete my progress notes from the workday, and blurry vision. I thought I was just tired because the ER assessed me as having “arm cramping and anxiety.” 

I went to bed that night thinking I’ll feel better tomorrow, however I woke up with a very bad headache, continued fatigue, continued confusion, and continued inability to read. I mean, I wasn’t paralyzed so no stroke, right? Later that night, I was texting my husband who was in Oregon and my texts weren’t making sense. I was experiencing Wernicke’s aphasia (word salad). After he called with concern and heard my word salad, he called 911. So back to the same ER but in an ambulance I went! This time they gave me a CT scan that showed the stroke and put me in another ambulance to a stroke hospital. There I received a number of blood, urine and heart tests on top of additional CT scans and an MRI. Have you ever stayed the night in a hospital? Someone comes in every 2 hours throughout the night. It’s definitely not a place of rest. 

After I was discharged, I took just a week off — unaware of how severe my condition truly was. I had to refer out about 40% of my clients and did my best to go on with my life. That’s where AI came in. Getting an appointment with a vascular or stroke neurologist had incredibly long wait times so Chat GPT helped me understand my test results and devise questions for my doctors. Then I hit the ground running and went into recovery mode: exercising my brain and body, building a community, going to all of my medical appointments with a list of questions, taking my medications as prescribed, feeling my feelings, grieving my past self, reading books on grief and studies on stroke / CVST, and learning what recovery milestones I could expect. I practiced what I preach to my clients. I confronted it head on and it was fucking terrifying. This has been the hardest year of my life. 

My hematologist eventually diagnosed me with an autoimmune disease called Antiphospholipid Syndrome, which caused my stroke, and transitioned me to Warfarin. I met with a neuropsychologist for testing so I could work on my cognitive deficits. I met with a psychiatrist when I was feeling scarily hopeless. I joined a TBI and stroke survivors support group and did a 10-week brain training course called CogEx with a different neuropsychologist. I pushed myself on the treadmill, bought earplugs for overstimulation, went to bed at the same time every night and read about 2 hours a day. I continue to learn my new capacity and take naps to cope with fatigue. It takes an incredible amount of energy to heal the brain. (Side note: the dead brain tissue from the stroke is called liquified necrosis and it takes the brain months to form a cyst around it to protect the survivor’s remaining healthy brain. This technically makes me part zombie.)

I’ll spare you the long list of post-stroke symptoms, but some are ... internal tremors in my brain and hips that wake me from sleep, difficulty with procedural memory, like, which side of the envelope does the stamp go on or what goes on first? Bra or shirt? Thankfully, I always eventually remember the bra first before leaving the house. Noise filtering is incredibly stressful on my brain so I carry earplugs with me while I’m out. Sudden stiffening of my right arm and right leg during activity is alarming. My right thumb freezing while texting is frustrating. Visual auras without pain, which may be seizures but I’m currently waiting for an EEG to confirm. Bouts of dizziness and head pressure that make me think I'm having another stroke. And an intermittent burning sensation on the entire right side of my body. After a careful cost benefit analysis, I decided to close my in-person office six months after my stroke and work remotely 100%. My decision was finally based on safety and managing overwhelm. 

There’s something interpersonally that happens with the people closest to you. During my hospital stay, a colleague and good friend stayed with me for most of one of my 2-day stay. I’m very grateful to her for being there. Yet, a close friend I’ve known for 30+ years barely responded and admitted she’s “not good with emergencies.” Other friends and family have either ghosted or been largely absent not really knowing how to respond. It’s been a challenge to not take another person’s absence personally, but has also been a lesson about our different capacities. I’m especially grateful for my husband’s ability to care and love me despite my illness. He has an endless capacity to witness my day-to-day challenges and listens with sincerity to next steps in my healing journey. He’s gone to appointments with me as a second set of ears and asks questions if I forget them. This year has brought us closer in ways that I could not have imagined. 

If we’re lucky enough to live long and deeply, we all face tragedy at some point. Tragedy is an opportunity to learn the different ways we interface with life and how to be flexible with change - or not. Having a stroke is traumatic and I’m coping with it in ways that are normal: denial, humor, terror, anger, action, and more humor. The grief, sadness, depression, powerlessness, confusion, and imposter syndrome (because my deficits are largely cognitive) have been very challenging to navigate. Then there are parts of myself that have shown up in a fierce way - my advocate, lady justice, perseverance, ambition, clarity, and gratitude.

I don’t fully know why I’m sharing this on my blog. Maybe it's commemorating the incident and putting it out into the universe. Maybe it’s to help a reader relate and not feel so alone in their journey. Whatever the case, I appreciate you landing here.

I am incredibly grateful to be alive. 
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