Dating Rob Lowe as a junior high student and giving him his first kiss might have been enough to make Julia Schaefer unique. The two met while acting in a Dayton Playhouse production of the “Wizard of Oz” and Lowe later mentioned her in his 2011 autobiography.
But a less appealing distinction for Schaefer emerged when she was 39 and was diagnosed with fibrolamella, a rare form of liver cancer.
“It was a shock. The tumor was the size of a grapefruit,” Schaefer said. “After they removed it, I thought everything was hunky-dory and I could go back to my regular life with my husband and kids.”
The relief didn’t last long. A year later, she was back under the knife.
“When the cancer came back, it was outside of my abdominal area, in my chest cavity. They had determined it was spreading and gave me a faulty prognosis that I had that year and maybe a few more to live,” she said.
That was 12 years ago. Since then, coping with cancer has changed her life in profound ways, altering nearly every aspect of her life, from her marriage to her career to her finances.
For the past two years, the Kettering resident has relied on disability payments for her livelihood, after stomach surgery left her on a permanent feeding tube.
Her own hardships have given her insights into what other men and women living with serious illnesses and disabilities experience.
Now, she’s trying to do something about it.
Becoming an advocate
“We need to change the laws governing the benefits amount that people get,” she said, referring to Social Security Administration benefits for the chronically ill. Schaefer has been meeting with area medical centers and cancer support groups and is in the process of forming a nonprofit group that will advocate for disability determination reform. She is circulating a petition to Congress that makes two requests.
First, it asks that a $2,000 resource limit for individuals in the Supplemental Security Income program be raised to $20,000. She said she believes it’s a shame that individuals must liquidate almost everything in their lives in order to qualify for benefits.
Second, the petition asks that the credit of work calculator for the Social Security disability insurance program take into account an individual’s entire working career, and not just the income they earned during the past 10 years. “For most people in this situation, the last 10 years is when they were sick or recovering from surgery. They may have worked for 30 years, but their disability income doesn’t include the money they put in while they were well.”
Beating the odds
In two years time, Schaefer will be the longest documented survivor of her form of cancer.
At the time of her diagnosis, Schaefer was a married stay-at-home mom, with a 10-year-old son and an adopted newborn. During the next few years, her life unraveled. “I was losing my life, losing my marriage and ended up losing my adopted son and my home,” she said.
When her health stabilized again, she decided to make some changes.
She went back to college for a teaching certificate and landed a position with the Greene County Learning Center, teaching learning disabled children.
After three years, she had to quit when her cancer returned and she needed more surgery. Since then, between health concerns and seven surgeries, her employment has been erratic and unstable.
Being a cancer patient is rough, but being disabled is rougher, she said.
“It wasn’t until I was disabled two years ago that I got a sense of the loss of dignity experienced by the disabled,” she said. “When you are disabled, you can’t support your family. The economics of disability really decrease the quality of life that people have.”
Strength and inspiration
Schaefer is grateful for the love and help given her by her parents, her sons — she has maintained contact with the infant she adopted — and by a group of 25 alumni from Beavercreek High School’s class of 1979.
“They’ve been huge supporters of me and have helped me so much,” she said.
Her friends drop off meals, help out with maintenance projects, and have been known to rent a limo to transport Schaefer to surgery appointments. She credits them with helping to keep her optimistic over the years. Schaefer hopes her efforts to ease the financial burdens of others make a difference. “The idea that I can maybe create change for other people in my situation gives me a sense of purpose,” she said. “Anybody can become disabled. The problem I have is a big problem that can touch anybody.”
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