by Kent Annan
Tuesday morning, January 23 of last year: Julia Robinson, Class of 1985, collapsed while brushing her teeth, used her arms to drag herself across the floor (“my legs were like spaghetti”), and dialed 911. By the time the ambulance arrived she was okay.
Tuesday afternoon, same day: Robinson saw her neurologist, who told her she needed serious attention, that there was no room in the hospital, that she should go home, get a friend to stay with her, and check in for testing the next day. Robinson had suffered since the late 1980s with pernicious anemia, a disease that shouldn’t strike until old age, that in her mid-30s had debilitated her with exhaustion and caused her to take a leave from her Ph.D. studies in New Testament at Fuller Theological Seminary (where
she had finished all but her dissertation), stop teaching at Fuller, and quit working as a paralegal. She had also a few years earlier been diagnosed with hemochromatosis, a genetic blood disease that results in the body’s inability to metabolize iron, thus doing severe damage to her internal organs. That night: Brushing her teeth before bed (“a dangerous activity for me!” she laughs), Robinson collapsed again, her friend called 911, she was taken to the hospital, and by the next morning she was paraplegic (some movement, but little control of her limbs).
Robinson, 46, who lives in Pasadena, California, remains paraplegic to this day and has spent the last year at death’s door. She lives on her own; a state agency provides her enough money to afford nine hours per day of personal in-house assistance. She lives month-to-month on social security checks.
And she tells her wrenching life story with disarming grace and honesty. “I have a really deep faith in God,” she says. “I didn’t know why this was happening to me, but I knew God was with me in it. I knew I was probably going to die. And to this day they say I could die anytime. I now have a demyelinating disease of the nervous system—where nerves are becoming bare and exposed and unable to take messages from the brain. It’s somewhat like multiple sclerosis.”
She reflects more on her time in the hospital. “I remember talking about hospital visits in one of my classes on pastoral care at Princeton,” she says. “The professor said that one of the most important things was to not sit on the patient’s bed, because that violated the patient’s personal space. But there weren’t many chairs in the hospital I was in, and often no chairs in my room. And when a chaplain would come in to visit me, I would think, ‘Please, please, sit on my bed.’”
She continues, now crying softly, “I wanted to talk with them about what it was like to die, how to say goodbye to my friends. I wanted them to sit on the bed, because I wanted them not to leave too soon, and I thought they might stay longer if they could sit instead of stand. I was so scared.”
"Julia reminds me of a delicate flower that’s been snowed on, hailed on, stepped on, but keeps sending up its shoot—looking for sun, looking for life.”
Then turning her thoughts to those who might read this article, she says, “So I suggest that if you go into a hospital room where there’s no chair, then say, ‘Since there are no chairs, then would you mind if I sit on the bed?’ Give them the choice. I think many would say, ‘Please sit down.’”
One who did sit with her while she was in the hospital was Mike Pyburn, Class of 1984, stated supply pastor at Dupont Community Presbyterian Church in Dupont, Washington, who has been a friend since they were at PTS together. Their friendship began when Pyburn approached her after a presentation in class, amazed by her insight and eloquence. Now they talk on the phone about once a week. “I’ll tell you,” he says, “what she’s been through is more than almost any of us could have survived. I would have broken long ago. And the physical part is only the tip of the iceberg. She’s emotionally and physically had the crap kicked out of her all her life.”
While her faith and friendships have sustained her, Robinson has found reentering church life difficult. She recently dreamed she was lying on her back in a rippling stream, submerged under the shallow water. She was struggling to get to the surface, desperate to get a breath. Through the water, she could see a small, pretty stone bridge over the stream. Parishioners were walking across the bridge in their Sunday best, pearls and all. A kind-looking woman, on behalf of them all, looked down caringly at Robinson under the water and said, “We’ll pray for you, dear.”
After the dream—a not-so-subtle sign, she laughs ruefully—she decided to find another church, because the United Church of Christ congregation she was in seemed happy to have her as their “pet prayer project” but not to involve her in the life of the church. She called the local Presbyterian congregation, explained her situation, and was told she was welcome to watch their Sunday service on channel 56. So she called the local Episcopal church: they told her they would pick her up anytime she wants to attend; a Eucharistic minister visits her weekly, and she’s received several pastoral visits.
Robinson came to Princeton because she had
a call to ministry. She still has that call, but the focus has changed:
she wants to start an institute of clergy, psychologists, and others who
can help those who find themselves suddenly disabled in mid-life.
"Julia reminds me,” says Pyburn, “of a delicate flower that’s been snowed on, hailed on, stepped on, but keeps sending up its shoot—looking for sun, looking for life. She has a phenomenal will to live.”
Robinson welcomes people to contact her about becoming involved in her institute idea. She also wonders if someone might donate a computer to help her with correspondence and to allow her to find companionship through email and in chat rooms. Her phone number is 626-564-8091. Her address is 65 North Parkwood Avenue, Pasadena, CA 91107.