Portrait: Sarah

Sarah had the first of two strokes on April 19, 2016, two days after her 30th birthday. She talks about the importance of raising awareness of stroke in young people and having access to more support to live a full life.

A little bit about Sarah

I had my first of two strokes on April 19, 2016, two days after my 30th birthday. I jumped up to celebrate a goal being scored at a hockey game two weeks prior and felt something twinge in my neck. I had terrible neck pain and headaches during those two weeks.

I went to the ER where they did scans of my brain but not having found anything, they sent me home with painkillers and a recommendation to see a neurologist. The neurologist thought it was a pinched nerve and suggested that I get an MRI and attend physical therapy.

My insurance did not approve the MRI right away, so I went and got a massage and saw the physical therapist. The next morning, I woke up feeling better than I had in 2 weeks and thought the therapy had helped. About an hour later, I suddenly got so dizzy I could not stand and the whole room was moving. I spent several hours laying down on my couch, unable to move or open my eyes, periodically vomiting from the dizziness.

My now-husband, then boyfriend, and I thought I was just having a bad reaction to the medication which is why we didn't call 911 right away. After a couple of hours, my mom drove to New York City from New Jersey to get me, and as soon as she saw me, she called 911. The ambulance came and brought me to the ER where I spent almost 12 hours laying on a bed in a hallway because the ER was under construction and didn't have a room for me.

They did multiple CT scans before someone thought to scan my neck, and they finally realized I'd had a stroke. The ER transferred me to a different hospital that had a stroke/neurology ward that would be better prepared to care for me.

 

Expect the unexpected

My initial stroke was a dissection in my left vertebral artery, and I thankfully did not have any huge deficits besides ongoing vertigo and balance issues. I spent 2 weeks in the hospital. On the day before I was supposed to be transferred to the inpatient rehab facility (April 30), I had a second, more severe stroke, this time in my medulla. I woke up that morning and the left side of my face felt a little funny. Then, I noticed my left arm and leg weren't working quite right. My vertigo got much worse again, and I started throwing up. My left eye couldn't focus on anything and had very bad nystagmus.

“It was an absolutely awful 24 hours. I couldn't do anything to get comfortable from the vertigo, having my eyes open was miserable, nothing helped the nausea, and I couldn't sleep.”

The next day, after I was stabilized, the hospital transferred me to the inpatient rehab facility at JFK Hospital in Edison, NJ that I truly believe saved me. I immediately began intense rehabilitation for the next two weeks. I had to learn to walk again, do therapy for my left hand to get my dexterity back, and work on all sorts of exercises to try to help with my vision since my left eye was still out of whack. It was a grueling two weeks, but the therapy helped with my mobility tremendously, and I was sent home on May 17.

 

The year that followed

The following year was a real test of my resolve and determination. Prior to the stroke, I worked as a web developer at an ad agency in New York City, where I lived with my boyfriend. After the stroke, I couldn't look at a computer for more than about 10 minutes at a time without getting awful headaches and having my vertigo flare up. I was extremely sensitive to noise and visual overstimulation, so I had to spend May through August living with my mother in New Jersey, because NYC was too much for my brain to handle.

I continued to do outpatient rehab three days a week for that whole summer, and the staff at JFK were tremendous. The physical and occupational therapists came up with unique therapies to try to mimic things like being on the subway to help get my body and mind back to some semblance of normal so I could handle going back to my life. But my eye was still giving me the most grief.

Even once my body got back up to speed, and I was able to walk and use my hands again, the limitations of my left eye were really affecting my life. I couldn’t read, I couldn’t do my job, and it was really hard. Thankfully, I was recommended a neuro-opthomologist that did special vision therapy and it was a game changer. They came up with a game plan. It was a long road – I did therapy twice a week from September of 2016 until June of 2017 – but it was worth it. By December, I was functional enough that I planned to go back to work part-time in January. By March, I was able to add an additional day of work. By June, I was full-time and back to living my life as normal.

 

Issues that remain

I still have frequent headaches, lingering mild vertigo basically all the time, the left side of my face is numb and feels cold to me all the time, and my left eye still has some nystagmus and gets tired easily. If I look to my left the eye bounces around and makes the vertigo worse. If I lay flat, I often suffer a quick 10 second burst of vertigo like I had the morning of the stroke. But all in all, my life is mostly back to how it was pre-stroke. I know I am very lucky.

Why raising awareness is so important

I think what SameYou is doing is so important. I struggled to get my insurance to cover my outpatient physical and occupational therapy beyond THREE sessions. Insurance barely covered my vision therapy. Those sessions cost $125 every time I went, while I was making $350 a week on disability. If I wasn’t lucky enough to have family that I could stay with, a good job that didn’t let me go when I couldn’t return as quickly as we first thought, and a decent amount of savings, I could easily have ended up either having to give up on therapy and live a greatly diminished life, or have gone completely broke. It shouldn’t be like this. I am also certain that if more people were aware of how common stroke can be in younger people, I would not have been walking around for 2 weeks like a ticking time bomb. Awareness of these things is so important, and resources for therapy will change lives. I cannot imagine where I would be if I hadn’t had my amazing therapists.

 

Sarah's story highlights the need for more support during recovery to help survivors to live a full life. SameYou is a brain injury recovery charity that works to develop better mental health recovery treatment for survivors and advocates for change. Donate to support our mission

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