My first job after college was as a disability benefits specialist for a local insurance company. It was never meant to last. I was an English major after all and dreamed of writing the Great American novel. Nearly 40 years later, I am left wondering if landing there was some sort of divine intervention.
I spent my early years in the business talking with employees out of work due to a disabling condition. I recall long conversations with me asking probing questions about day-to-day activities, doctors’ visits, medical tests and notes, restrictions and limitations, and plans for returning to work. Claimants shared their stories, sometimes reluctantly, but undoubtedly understanding that I stood between them and their benefits. Conversations were often emotional, with me listening as they recounted stories of their illnesses, injuries, financial struggles, hopes, and frustrations. I learned from each call, striving to be empathetic, listen well, and make fair claim determinations. I understood how much it mattered.
After a few years, I moved over to the underwriting side of the house (my college professor asked me, “What are you writing under?”), where I worked alongside our sales team to price and sell group employer disability plans. I learned to look at all angles of a case before quoting it, including scrutinizing the census data, researching the industry, analyzing the experience, and reviewing the plan design features. I was focused more on the technical and analytical parts of the case, but the stories from my time in claims never faded away completely.
Back to the possibility of divine intervention.
In January of 2020, after spending many hours in a small, windowless office at Massachusetts Eye & Ear, we learned that our twenty-year-old daughter was going blind. She was diagnosed with a rare genetic and progressive disease affecting her central vision. Stargardt’s disease affects 1 in 10,000 people. Currently, there is no cure. She was the one. It felt like a devastating blow, and quite honestly, like walking off a cliff.
Looking back, the signs were there. As a young girl, she’d ask why the stars disappeared when she looked at them. I admonished her regularly at the dinner table to “sit up straight and get your face out of your plate.” Her junior high lacrosse coach wondered if she’d play better with a different face mask, maybe with fewer crossbars? She opted not to wear her glasses (now we realize they weren’t helping her) even while complaining she couldn’t see the board. During college, she described not recognizing her friends walking toward her across the quad. There were many signs, but we weren’t looking for them.
It’s been five years since her diagnosis, and she is thriving. She’s made a bucket list of the top 10 places she’d like to see (two down, eight to go!), formed an online support group for people with low vision, and recently started a new job working in development… for Massachusetts Eye and Ear. Her sight continues to diminish.
Though she hasn’t had to file a group disability claim through her employer, she is considered disabled by some standards. She can no longer drive and uses a walking stick in airports. You wouldn’t necessarily know of her impairment by looking at her. She wants to keep it that way as long as possible, and with the help of technology, supportive colleagues, and aids for the blind, she can work full time and lead an active, full life.
Thankfully, her employer purchased a group benefit plan for which she is eligible. Though not likely on any of her bucket lists, someday, she may need to recount her disability story to a Claims Professional. They will ask her questions, request medical notes, and review her employer’s disability plan to determine whether she qualifies. When the time comes, she’ll be eligible to apply for a benefit that has the potential to change her life. I’m sure that feels very far away for her right now, but I know firsthand how much it matters.
