Jacqueline Dilley was in the final weeks of planning a fundraiser benefit for the nonprofit UnspokenWorks she founded with friend Lisa Bruce when everything came to a stop for her one night in May.
Dilley, a Hollister native who lived in San Jose, had been staying in Hollister at her parents’ home over the weekend. She often came down from her home in San Jose to help her parents with errands on the weekends or to get them to doctor’s appointments during the week. She used her weekend visits to help out her fifth-grade teacher, a senior citizen who lost his wife a few years ago, as well.
On May 22, when she got up in the middle of the night to go to the bathroom, she tripped and fell.
“When I fell, I just remember not being able to move,” she said.
She was taken to the Hazel Hawkins Emergency Room, where doctors decided to fly her to San Jose Regional Medical Center for surgery.
“I started to realize how serious it was,” she said. “I could tell by the look on their faces.”
Dilley had broken her neck and she underwent emergency surgery in San Jose, before she was moved to the intensive care unit.
“I realized it was going to be a long process,” she said.
Immediately after her accident, Dilley couldn’t move her upper or lower body, though her speech was intact.
She spent four weeks at the hospital, two in ICU, before she was transferred to Santa Clara Valley Medical Center. The hospital has a reputable spinal cord injury program. There, Dilley spent six hours a day in physical and occupational therapy. She has continued the therapy six hours a day, every day, since she was released from the hospital. She is staying with her parents in Hollister because it would have been impossible for her to get in and out of her three-story townhouse building in San Jose.
Dilley has three home caregivers who monitor her 24 hours a day. She also has a physical therapist and occupational therapist who visit her at home, an acupuncturist she visits in San Jose three days a week for more physical therapy, a psychologist, her primary care physician and doctors from Valley Medical.
Staying active
Even as she was struggling to stabilize, Dilley was still thinking of others. She encouraged her friends to make sure the Unspoken Works fundraiser continued without her. The nonprofit collects donations to give backpacks with school supplies, hygiene products, Christmas gifts and Easter baskets to low-income students in south Santa Clara and San Benito counties.
“Unfortunately since my accident, I haven’t been able to be as involved,” she said. “I have my board (of directors) working on my behalf while I’m working six hours a day to try to get back to a more capable state.”
Dilley said the one of the biggest challenges for her is that she has had to rely so much on other people for help when she is used to being the person to do the helping.
“The most challenging is not being able to provide for myself,” she said.
Her parents Ken and Charlotte Dilley allowed Dilley to move back in with them while she continues her recovery. Her brother Ernie Dilley, she said, spent everyday with her while she was in the hospital and continues to visit each weekend.
“The one person who has made a huge impact is my brother,” she said.
Dilley, who started out taking 25 medications when she first arrived home, said other people are one of the reasons she keeps up her motivation.
Since starting therapy, Dilley has regained movement and normal feeling from her chest up. During a recent therapy session she was excited to share with Claudia Cameron, her physical therapist, that she had been able to wiggle her toes and move her feet over the weekend. From her chest down, she can feel pressure, but not hot or cold.
“It just seems so huge,” she said. “Every little thing I do is something major.”
Cameron said one of the other big challenges for spinal cord patients or others with what she called “catastrophic injuries” is the limitation on what insurance will cover for patients. Dilley’s insurance did not cover the $32,000 power wheelchair she needed to move around her parents’ home or the manual chair she needs when she travels by car for $3,100. It also did not cover equipment needed to modify her bathroom or some of the items she uses in therapy.
Challenges to recovery
Getting around in Hollister has been tough for Dilley. She said County Transit has been great, but it is not always available at the times when she needs it. She has used a shuttle service through Jovenes de Antano, but that service only provides rides to doctor’s appointments and is often booked well in advance. She recently acquired a van of her own that her caretaker will use to take her to acupuncture appointments in San Jose.
“One person who really inspired me is Eric Tognazzini (who passed away last year,)” she said. “He used to ride around town in his wheelchair…he used to go everywhere in a manual chair.”
During the recent therapy session, Dilley worked on maintaining her balance while sitting upright on the edge of a bed. She also reached for cones, grasped them and moved them from one stack to another. She and Cameron worked with a wooden bar to help her exercise her core muscles as she leaned forward and back in her wheelchair. The seemingly simple movements that most people might take for granted were a strain for her.
“We’ve been working a lot on being able to have hand mobility and forward balance,” Cameron said. “We are really trying to fire up the trunk as well as arm movements.”
Dilley said when she was first injured, her doctors did not want to give her a prognosis but now they are more confident that she will regain full function. But it will take more months of intensive and costly treatment to get her there.
Fundraiser ahead
Friends are organizing an upcoming fundraiser that will be announced in the coming weeks, while Dilley has set up the Jacqueline A. Dilley Medical Fund at Santa Barbara Bank and Trust in Hollister. Those who would like to donate to Dilley’s medical needs can do so through the fund, by referencing the account name and last for digits of the account number, 5075. “I continue to move forward,” Dilley said. “I want to be able to get back to normal status so I can continue to move forward – and get back to helping kids and seniors.”
