Survivor’s life became a relearning process
It was 2 a.m. when Susan Gray woke up in bed, the pain in her head so severe she saw red. She couldn’t lift her head from her pillow. Attempting to roll over, she couldn’t move her left side.
She remembers the pain, the fear and the trip to the hospital, but family and friends had to fill in the events of the next nine days after her stroke: the second major bleed half a day after the first, being rushed into surgery for a 16-hour operation, fighting from her hospital bed to sit up when a gauge in her brain required her to remain down. She threw up everything she ate, they told her, and she was confused and combative – typical stages after a brain injury.
The parking lot at her church, they told her, was packed during her prayer vigil.
For Gray, 46, a Spokane physical therapist who now sits on the community advisory board at St. Luke’s Rehabilitation Institute, her memory resumes nine days after that stroke. Her first recollection is of her sister explaining to her – probably for the “umpteenth” time, Gray said – what had happened.
At 37, the mother of 3- and 7-year-old daughters had suffered a hemorrhagic stroke – a major rupture of blood vessels on the right side of her brain. Accounting for about 10 percent of strokes, hemorrhagic strokes are rare compared with ischemic strokes, which are caused by blood clots.
To recover from a stroke is to relearn just about everything, Gray said – how to work a zipper, that socks go on before shoes, the stages of sitting up in bed. She had to learn to care for her children again. She and her husband, Patrick Gray, had to learn to function together in new ways, she said. He learned when to back off, she learned when to accept help.
“A stroke is almost like a death, where half of my body just pretty much stopped working,” Gray said recently. “I think you go through the same grieving stages. The life that I had on May 28th looked very different than where it began on the 29th.”
As a physical therapist, she said, she knew the only way she’d recover would be to work at it. She also knew that her children were watching, and that how she handled her recovery would influence how they handled problems in their own lives.
Her first goal was to bathe independently. Then she wanted to be able to stay home alone with her kids at night, while her husband worked, and then during the day. Later would come driving and returning to work.
Gray received three kinds of therapy: physical, occupational and speech. While she didn’t suffer speech problems, she said, speech therapists help patients with other problems, too, such as short-term memory problems, which she did suffer.Initially, after the stroke, Gray had a flaccid left side – she couldn’t move anything. Three weeks after her surgery, as the swelling went down, she was able to flex her left elbow. Then she could open her fisted hand.
With work and time, “a lot of those connections came back,” she said. Some never did. She wears a leg brace because the muscles on the outside of her ankle don’t work.
In her work, she can pass along lessons from her own experience – chief among them: take naps – and she’s gained credibility with patients.
“ ‘I know how hard it is to have somebody driving you everywhere, make your meals when you’ve been living independently all these years,’ ” she said she tells them, “ ‘So my goal is to get you where you can get back to that.’ They buy into that because they know I’ve been through that process.”
It took awhile for her to regain her authority as a mother. She was in the hospital – two weeks after surgery at Sacred Heart Medical Center, then six weeks at St. Luke’s. Then, back at home, her family needed daily help from friends, family and paid caregivers. “I felt really guilty in the beginning, that (my children) had to go through that, such a stressful thing of almost losing me and then having me be gone,” Gray said. “All of the uncertainties in their lives, and then having their mom have this disability.”
Now, she said, she sees how much her children have benefitted from the family’s experience. Courtney, now 16, and Danielle, 12, are more aware of other people’s needs, Gray said, and they respond. At 5, Danielle hurried to help a woman with a walker by opening a door for her at McDonald’s. Courtney has been doing jobs for friends and neighbors since she was 10, earning her own money as the family’s income shrank. Gray worked 35 hours a week before her stroke; now nine is her limit before exhaustion affects her coordination and judgment.
She suffered depression during her recovery as well as humiliation. Before surgeons replaced the section of skull removed during surgery (it was stored in the meantime at a bone bank), she had to wear a helmet to protect her brain, a chin strap holding it in place
“I looked really kiddish in it and dorky,” she said. “And anytime I was out of my wheelchair I had to have that on. You humble yourself multiple times a day with something like this, but that was one of the more humiliating (parts), to have to wear that.”
As she closes in on a decade after her stroke, her family has new priorities, she said. After coming so close, she didn’t die. “You just gain an appreciation for everything you do have,” she said, “and you just figure out a way to make it work.”