Seeing The Invisible Disability

Rob Staffen was standing at the back of the crowded room at the St. Marys Golf and Country Club, his family business. It was the second annual fundraising event for the Brain & Mind Matters Community Fund, which he and his family founded to provide grants to charitable organizations that support people with brain injuries near his hometown of St. Marys, Ont. The charity was inspired by Rob’s own story: in 2012, he suffered a traumatic brain injury (TBI) while cycling in Joshua Tree National Park.

Rob’s daughter, in her early 30s at the time, stood at the microphone. “I have had two dads,” she told the crowd. “Dad 1.0 and Dad 2.0.” Staffen was shocked – two dads? Had his brain injury really changed him that much?

“I looked to my wife, Sharon, whom I’ve known since grade 10, to confirm,” he says. “She said that after the accident, it was like falling in love with someone new.”

“After I got out of the hospital, you could never tell by looking at me that I was injured,”

Rob says, though he has dealt with severe cognitive fatigue, personality changes, anxiety, tinnitus, and high sensitivity to light and sound for years.

Rob was fortunate: he was able to get immediate in- and out-patient care at Parkwood Institute in London, Ontario, where their Pacing Points Program was critical for his recovery. But the waitlist for care can be years long. “TBIs are way more serious than we think,” Rob says. “We need to start helping people earlier.”

Another hurdle is navigating the return-to work process with employers and insurance companies. Some survivors feel pressured to return to work before they are ready in order to keep their jobs or are burdened by having to “prove themselves” as disabled to insurance companies to receive benefits.

Those who want to continue working may find employers unable or unwilling to accommodate their fluctuating abilities.

Rob, an entrepreneur with a family business, avoided these types of difficulties with employers. But for him and many others, a complex web of challenges remains for life.

Ten years after his accident, Rob is back to work and back on his bike. But he lives differently now: he has to manage his energy to avoid cognitive overload, and take a more holistic approach to his time, carefully assessing what is most important.

“A brain injury never leaves you. You just have to figure out how to live with it for the rest of your life,” he says. “It’s a lifetime commitment to get better.”