We’re Emily and Bethany, sisters and co-founders of LION, and we wouldn’t be writing a blog post today if not for Emily’s stroke in 2016. She is the survivor who inspired this whole adventure, so what better place to start than with her story!
(Written tag-team style with commentary from Emily in quotes. She has aphasia.)
On January 2, 2016, Emily traveled back to grad school in Indiana after spending the holidays with family. She remembers watching a movie (“Top Gun!”) with a friend that evening when the right side of her face started to feel weird. Her friend had EMS training and recognized that Emily was having a stroke.
“Basically, I almost died.”
Our family gathered within 24 hours in Indianapolis, IN. Testing that day revealed she had experienced a massive hemorrhagic stroke. Her brain was under incredible pressure from the brain bleed and there was no way to know the extent of damage. The prognosis of the first neurosurgeon:
“Basically, dead. But I showed them!”
Fortunately, the second neurosurgeon who examined Emily offered some hope. The choices were: 1) wait and let the brain absorb the bleed. She would most likely have more strokes from the pressure. 2) High-risk brain-pathway surgery that would relieve pressure on her brain by evacuating blood that had pooled on the left side.
This was an agonizing decision for our family, not to mention shocking and surreal. She had been healthy, thriving in grad school, and we’d all had breakfast with her less than 48 hours prior at my parents’ house. Suddenly she was unconscious and hooked up to a dozen tubes and wires and we were forced to make the monstrous choice between two terrifying (but potentially life-saving) options.
“Woohoo!” (Emily’s sarcasm is intact.)
We opted for the surgery. There was so much unknown at that point. We finally decided that if we didn’t choose the surgery we would always wonder-- and if successful the surgery would likely have a better outcome than not intervening.
Our relief that she made it through surgery doubled when we learned they removed almost 80% of the blood that was exerting pressure on her brain. But then began excruciating days of waiting. Waiting for tests to come back, tubes to be removed, waiting for her to open her eyes, and for her to respond in ways that showed understanding or awareness.
Very, very slowly these things happened, and we were giddy with each one. The first time she rolled her eyes at a patronizing nurse (while still intubated and otherwise not very aware) elicited tears and prayers of thanks that her sassy, sarcastic personality appeared intact. Between those moments, there were long hours of waiting and fearing and hoping.
A couple weeks after surgery she was moved to a step-down unit from Neuro ICU. At this point she was awake for a couple hours each day, though still unable to speak beyond a hesitant yes or no, and even those responses were not always what she was trying to say. (Now, her memories of this time are “like it’s a dream.”)
By then she had been diagnosed with expressive aphasia and right-sided weakness. In other words, she was unable to communicate her thoughts or questions and could not move the right side of her body. (More to come about aphasia-- but for her the inability to communicate initially included typing, writing and reading in addition to speaking.) Let me tell you-- the first time she sang just a few words of “Happy Birthday” with a speech therapist in the step-down unit was an especially big tear-jerker moment, and gallons of tears were being cried in those days.
Once stable, Emily was transferred to a rehabilitation hospital in Detroit. The highly reputable facility is close to where my parents live and would eventually allow for continuity with outpatient therapy. The therapy was intense, her progress steady but slow.
But this was where we began to get an idea of how hard Emily was ready to work. She ended each day utterly exhausted.
“The nurses and the therapists are so good. Soooo good.”
In occupational therapy she started to learn how to take care of herself (i.e. brush teeth or get dressed) left-handed and one-handed, as she still could not walk or move her right arm or leg. Her speech therapist in Detroit helped her reclaim a word that expressed so much, and is still used today: frustrating. The physical therapists slowly began to coax movement from her right arm and leg. She was discharged a few days before her 26th birthday. With assistance, a brace on her right leg, and a cane she walked into my parents’ house-- something we could hardly have hoped for two months prior.
Emily continues to work incredibly hard in outpatient therapy three days a week and does exercises and “homework” on days when she doesn’t have therapy.
OK, that last sentence was a cop out. There’s just no easy way to summarize the nearly 18 months of therapy, steps forward and backward and feelings of frustration, pain, anger and numbness, to name a few.
If you’re familiar with the life of a survivor, you get it. You know that this is where it really gets difficult. Out of crisis mode-- at least enough to get through the day-to-day. But your life is completely different, and neither you or the people supporting you quite feel equipped to put the pieces back, or how they even fit together.
Which, in a roundabout way, brings us to today. Trying to create a space that acknowledges the reality of rebuilding your life as a survivor-- whether you survived injury, illness, or something that doesn’t quite fit in a neat category. Like it or not, here we are.
(Photo: Bethany's daughter with Emily in the hospital, January 2016. Walking with Bethany's daughter, July 2016. Sisters, May 2017,)