Dushore Native’s Loss of Eyesight Doesn’t Diminish Outlook On Life

Joanna Murray shows a mask that was used to shield radiation from unaffected organs that she painted and adorned with phrases that reflect her positive attitude about the challenges she has faced over the years.

Story and photos by Rick Hiduk

(originally published in the Sullivan Review)

Joanna Murray of Dushore loves life and her relationships with family, friends and church. She has lived with her parents, Ed and Barbara Murray, in the same house off Carpenter Street since she was born in 1980. Joanna enjoys nature, swimming, art, collecting Christmas decorations and sharing her love of music. She has ridden and shown horses as a 4-H member and has garnered a world-wide audience on social media for both her daily devotional readings and demonstrations of yoga poses.

Joanna attended the former Turnpike Elementary School in Mildred and then Sullivan County High School, from which she graduated in 1999. Early on, she found science to be her favorite subject. She won a first place ribbon for an entry about herbs in the sixth grade science fair. In high school, she participated in cross country through her junior year. In addition to working with ponies and horses with the 4-H for many years, she also dabbled in cooking.

But it was during her school years that Joanna learned to overcome severe visual impairment. A rare ocular cancer in her left eye resulted in its removal as an infant. And, at the age of 42, another equally rare eye cancer further diminished her eye sight. Despite these hardships, the Murrays say they “can’t complain” and that Joanna’s faith in God and unique perspective on life has taught them lessons they might otherwise have missed.

Barbara vividly recalls holding Joanna when she was just five weeks old and noticing that something about her daughter’s left eye didn’t look right. “The light in the bedroom was filtering through the curtain just enough to make it light enough but still dark enough that I could actually see inside of her eye,” Barbara noted. Within a few hours and some rudimentary research, Barbara learned that was she was seeing was called “cat’s eye” or leukocoria.

They were able to get Joanna in to see Doc Pete(rson) on a Monday, and he sent them directly to Robert Packer Hospital in Sayre. There it was determined that Joanna had an eye condition that could be cancer, but doctors also suggested that a parasite might be to blame. Either way, it was certain that Joanna’s retina was detached.

The next day, the small, young family that had rarely ventured beyond Sullivan County made their first of many monthly trips to Wills Eye Hospital in Philadelphia. They were met by Dr. Jerry Shield, who was able to confirm the diagnosis that day that Joanna did indeed have an eye cancer endemic to infants and toddlers called retinoblastoma – an extremely rare genetic mutation of the cells.

Despite the fact that the condition can be inherited from parents, Ed, Barbara, and Joanna’s older brother, Jonathan, tested negative for the genetic variant. Further examination revealed tumors in both eyes, meaning that Joanna’s condition was bilateral. The Murrays were told that Joanna’s future would include constant vigilance for other rare cancers.

At first, Ed remembered, they stayed at a chain hotel during their Philadelphia visits until they were led to Ronald McDonald House Charities which provided comfortable lodging at no cost. The Wills Eye Hospital gave them vouchers for food, and both parents were fortunate to have good health insurance plans. But the pressures of constant travel were still a source of financial and mental strain. Barbara credits Betty Jane Doyle for starting a fund that helped them meet additional needs like keeping tires on and gasoline in the car.

“Though we would never have asked for it,” Barbara stated, “That support helped us get back and forth.”

“The community was so good to us,” Ed agreed. “Many of them were people that we didn’t even know.”

Many hours of being anesthetized so specialists and surgeons could conduct extensive examination of her eyes led to cognitive damage that still affects Joanna’s ability to retain and retrieve information. Joanna was fitted with a plastic eye, and the Murrays embarked on a path to provide Joanna with as normal a life as possible.

From elementary through high school, Joanna found support through a learning disability program that also educated her teachers. “I had to sit in the front of the classroom so I could see the board,” Joanna related.

“She was struggling – wanting to keep up with the other kids,” said Barbara. “When she got mature enough, she was able to understand that she was doing the best she could.”

The Murrays are grateful for the kind and understanding school faculty members who worked with Joanna. Barbara was herself a teacher, first at Turnpike Elementary and then at Sullivan County Elementary School in Laporte where she served as a reading specialist and reading recovery teacher. She retired after 25 years of teaching to pursue her interests in music. Ed worked at Procter & Gamble in Mehoopany for 36 years until his retirement.

For the most part, Joanna took her condition in stride, impressing those around her with a tenacity that seemed to defy the odds. In both the sixth grade and her senior year in high school, she won Most and Best Effort awards. She attended votech for two years in pursuit of a nursing assistant certificate, but struggled with her memory issues. Joanna worked for two years at the Highlands Rehabilitation and Healthcare Center in Laporte, where her mother had also taken a job. There, Joanna enjoyed doing activities with the senior patients and residents until government funding for the program that supported her position ended.

“That’s when we decided that we would try to get her involved in volunteer work,” noted Barbara. Joanna worked at the local food pantry for many years, sorting food alongside her mother and packing and breaking down the boxes. Covid brought an untimely end to that adventure, but she has been able to work with senior citizens again as a volunteer with the Dushore Music Club, visiting nursing homes, as well the elementary school. Joanna enjoys singing church hymns and what she refers to as childhood memory songs. She is also a board member of the Sullivan County Council on the Arts. As a member of St. Paul’s United Methodist Church in Dushore, she sang in the choir and helped with Bible school.

But Joanna’s health issues took center stage again when she began having a tough time keeping one eyelid open. She remembers November 2022 as the month when she was diagnosed with sebaceous carcinoma, another rare cancer that targets the upper eyelid, which also caused a lump to form next to her eye. “But they also found, in her eyelid of the eye that she had had removed that there was a small tumor, and that was cancer,” Barbara added. “In my heart, I feel that the tumor that they found when she was 42 was already there and already beginning when she was an infant.”

After numerous rounds of chemotherapy to shrink the tumor, Joanna is currently cancer free, but her vision is restricted to what she can see out of the bottom half of her right eye. Despite those limitations, Joanna proudly maintains that the vision that she has left is 20/20 with corrective lenses.

While she and her mother do a lot of activities together, and Joanna and Ed still take an occasional ride to the hunting club where she reads a book – often the Bible – while her father takes a walk, Joanna has fostered a strong social media following that is all hers. On Facebook and Instagram, she shares “pocket prayers” and demonstrates yoga poses. Joanna explained that she started the latter by watching video tapes, “And then I decided, ‘I’m going to try to teach myself more.’”

“She has friends all over the world because she joins in their challenges, and they talk to her as if they are sisters,” Barbara said of her daughter’s online presence. Joanna also did prayer readings during the rounds of chemotherapy that she endured after her second cancer was diagnosed. “People were able to see exactly what she looked like when the radiation did its damage,” Barbara related. “There were days that she didn’t feel good, but she did it every day, either outside or from her bedroom.”

Joanna said that her disability never got in the way of her making friends in school. “They came to me, and I shared my first cancer with everyone,” she said. Many of Joanna’s childhood friends, Barbara noted, are still an important part of Joanna’s life.

Joanna has befriended and helped raise numerous cats and dogs, including an English setter named Speckles who died from a canine cancer. She loves the warmth of spring and summer and watching flowers grow and bloom. Joanna claims to not be a gardener, but her parents disagree. She helps her mother plant and maintain flower beds and picks vegetables from the garden. “We call her our little harvester,” Ed offered.

Joanna is not necessarily out of the woods. There’s always another appointment on the calendar for her to see one of the specialists who monitor her condition and watch to ensure that her cancers don’t return and that no new ones pop up. She will turn 44 on May 10.

Barbara refers to Joanna to be her best friend. “She is someone who is extremely forgiving,”she stated. “There are times that I get upset and angry, and Joanna pulls me back in.”

“She not only forgives. She forgets,” Ed added.

Joanna shrugs off any such compliments and humbly attributes her gentility and serenity to her faith. “I give a lot to the Lord,” she stated. “He knows what I have in my heart.”

Joanna Murray is flanked by her parents, Barbara (left) and Ed Murray in their Dushore home.