A stroke at 30 sapped an elementary school teacher's joy. Then she reclaimed it.
By Diane Daniel, American Heart Association News
Elementary school teacher Rachel Henry had been having monster headaches for a few weeks. She complained about them to colleagues, family, even the school nurse. No one seemed concerned about the 30-year-old. Henry, who lives in Worcester, Massachusetts, assumed they would pass.
At a routine checkup for a thyroid condition, Henry was checked in by a nurse. When the nurse and doctor returned a few minutes later, they found Henry slumped over. The left side of her body was paralyzed. She could not swallow.
The doctor assumed Henry was having a stroke and called 911. At the hospital, doctors said an artery in her brain stem had burst and she had a hemorrhagic stroke. Doctors thought it might have been related to a neck injury she'd had during a recent car accident, but they could not be certain.
Henry quickly regained movement in her limbs. The stroke did not impact her cognitive ability; she could process and understand everything. She could speak, but haltingly because of spastic muscles in the left side of her face and neck. The biggest issue was that she lost her ability to swallow.
She went to a nursing home for speech therapy to regain her swallow function. She found the environment so depressing that she checked herself out four days later.
From home, Henry, who lived alone, coordinated her own care. She set up the machine that fed her through a tube in her stomach, monitoring how much drip to get for food and liquids. She had to suction out her spit constantly or she would choke on it. She was shown how to sleep at a slight incline, tipping forward so her saliva would drain and thus not need suctioning; still, she was terrified of choking.
Four days a week she would see a speech therapist for what's called deep pharyngeal neuromuscular stimulation, an electrical stimulation therapy for people with dysphagia, or difficulty swallowing.
One day, she visited her elementary students so they could see that she was OK. When she spoke, she could feel the spit build up. She had to break away frequently and stealthily use her suction machine, which she carried in a bag over her shoulder. She felt ashamed and embarrassed.
While Henry worked to get better, a part of her wanted to die. What kind of life would she have? She had wanted to get married and have children, but that seemed out of reach now. She felt old, particularly as she saw that one of her close friends, Britt Richardson, was pregnant with her second child.
"It was a very dark time for Rachel," Richardson said. "She was very isolated, but I just kept reaching out. I remember being very worried for her."
In the summer of 2003, nine weeks after the stroke, Henry regained her ability to swallow. Half a year later, her speaking had improved, though the muscle spasms remained. She had other permanent issues as well – deep fatigue; no sensation of heat, cold or pain on the right side of her body; and a lack of thermoregulation, meaning her body could become overheated or chilled.
Her sick leave expired after nine months. With help from a teaching assistant, she returned to work.
That same year, she also walked 1 mile in the Worcester Heart Walk, an achievement that made her proud.
Still, Henry's life felt far from normal. Even as she improved, she feared having another stroke.
"Why me?" she continually asked.
Then one day, without any reason she can pinpoint, she changed course.
"I stopped thinking, 'Why me?' and I began to think 'Why not me?'" she said.
Richardson immediately saw a difference in her friend. "I knew she had it in her to turn things around," she said. "And boy did she ever do that."
Henry started reaching out to help others through the American Heart Association, from participating in Heart Walks to speaking with other survivors. She and her students created a song to help children understand the signs of a stroke in an adult and to call 911.
"Working with the AHA was the first time someone said to me, 'Your life has value as a disabled person. You're special. We want to hear from you even if you talk slow,'" she said.
Even as things improved, she still thought having a husband or starting a family was out of reach. Then along came Timothy Henry.
They met in 2006 and got married in 2008. In 2009, their son, Jason, was born.
Along the way, Rachel became involved with stroke advocacy. She testified for the need for quick treatment in stroke patients at both the state and national level. She continues to push for the passage of Massachusetts legislation to develop a coordinated stroke care system.
Rachel likes to take on a new challenge every summer. One year it was baking an eight-strand loaf of bread. Another time, it was jumping off a dock into the water with Jason, confident she would be able to close her mouth before water could get in.
Her current goals, 20 years after her stroke, are to get her students to join her in a Heart Walk and to win a top prize in the Spencer Fair. She's already nabbed multiple blue ribbons for crafts as diverse as crochet, photography, baked goods and woodworking.
"I'm always amazed by Rachel," Richardson said. "She has these struggles but is still so outgoing and funny. I look up to her so much."
More than anything, Rachel said she wants her fellow stroke survivors to believe in their own value.
"I get how hard it is," she said. "If you can let go of who you were, but believe you'll be someone wonderful, the joy is going to be around the corner."
Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.