State College, Pennsylvania, may be home to the Nittany Lions and a big, bustling university.
But what Ross Venett remembers about his hometown is the smallness of it, the fact that many of the farms surrounding the green valley were owned by families that never left. It was their kids Ross knew through marching band, Boy Scouts and church youth group, and for many years, Ross thought he would be a State College “lifer” as well.
“It was idyllic and sheltering,” he said, the kind of place where, when Ross suffered one of his debilitating migraines, the family doctor would swing by their house to administer a shot to help him sleep off the pain.
Then there was the day when not even a shot would help.
Ross was 19. He was attending Penn State, as well as working and volunteering as an emergency medical technician for the local ambulance service.
When Ross began clutching his head and screaming, his coworkers called his friends at the ambulance company to come help.
MRIs and CTs scans weren’t standard in those days, but Ross said: “I got lucky, because the hospital had just hired the doctor who saw me. He held up his finger, and I couldn’t see it when it was near the side of my head. He said, ‘Did you know your visual field is cut in both eyes?’”
That doctor was smart enough to know that Ross needed more attention than he could provide, and Ross was rushed 80 miles east to Geisinger Medical Center.
Ross was diagnosed there with a brain arteriovenous malformation (AVM). An AVM is a tangle of abnormal connections between arteries and veins. Normally the arteries carry blood away from the heart to other organs, and veins carry blood back to the heart. Capillaries connect the arteries and veins. An AVM is a snarled tangle of arteries and veins with no capillaries, which interferes with the entire blood circulation process.
Brain AVMs are very rare; they affect less than 1 percent of the population. No one knows exactly what causes them, but they are typically congenital.
Many AVMs are discovered during a brain scan for another health issue or after the blood vessels rupture and cause bleeding in the brain.
Ross now understood why he had been plagued by migraines, and why school had sometimes been so difficult. “People would say, ‘You’re just not working hard enough,’” Ross said. “And I couldn’t understand why I wasn’t remembering things … Now I knew.”
Ross’s doctors wanted to operate, but even at 19, Ross knew how be an advocate for himself. Perhaps it was his emergency medical training for the ambulance company, or the fact that his parents were research librarians.
“I said, ‘Can you tell me what I will be like after this surgery?’ They couldn’t tell me. They didn’t know. So I decided that rather than have them kill me, I’d rather have it kill me. And I went about my life.”
Some things changed because of Ross’s new diagnosis. He spent a lot of time locating and visiting AVM specialists: He learned there were only five in the world. One in particular, based in Boston, used proton radiation on Ross to increase the size of his cell walls to prevent the AVM from expanding.
It took eight years for Ross to finish college instead of four. He learned that he couldn’t hike or dive or do anything involving a change of altitude, which might put pressure on his brain.
But on balance: “I was not going to let this stop me from doing what I wanted to do.”
Ross started working for the Kmart retail store, and he was quickly promoted to manager. The store moved him around the country to help fix problem stores, and it was at the Burke Kmart where he met his wife, Wilma.
When he grew weary of retail, he took what he thought would be a temporary job with the technology firm SAIC, based in Tyson’s Corner. Seventeen years later, he was working as a procurement manager, handling multi-billion dollar contracts.
But something wasn’t right.
“I would be driving home and I would forget how to get there,” he said.
An MRI revealed that the AVM had grown, and Ross went back to researching neurologists. He underwent several procedures to help him stabilize, but in the meantime, his work was suffering. His personality was changing. He was demoted. And last summer, his petition to receive long-term disability was denied by SAIC.
Every day Ross bears head pain, but he said he’s “tolerant of the headaches because I know how much worse they can be.” Nothing so far has been as bad as those early days in State College.
He has filled his days since August volunteering with countless office projects at BPC, and working with his doctors and an attorney to appeal his former employer’s decision.
“It’s been so hard, wondering whether we have the money to pay next week’s bills or not.”
Last month, the call he’d been waiting for came: He won his appeal. Some light in the midst of what have been pretty dark days.
“How do you answer the ‘Why me?’” he said. “You can’t. You just have to say, ‘I’m not going to let it stop me.’”