Facing a mid-career disability; one man’s story – Twin Cities

Second Sunday Series — Editor’s Note: This is the 10th of 12 columns on work and disability appearing over 12 months — one on each second Sunday of the month, from September through August. Previous columns discussed whether to work with a disability, the subminimum wage, promotions for workers with disabilities, higher education decisions, self-advocating, career tips for family caretakers, testing limits as a worker with disabilities, the dilemma of revealing disabilities during job search, and overall concepts of disability in the workplace.

Will you become disabled during your working years? If so, will you be able to work?

Statistics are tricky but one commonly-used data point indicates 25% of today’s 20 year-olds will experience a disability during their working years. Some disabilities are short-term, with little impact on a worker’s career. Others are permanent but manageable in terms of work, while still others create a drastic change or even loss of work.

The disabilities themselves could involve any situation that changes one’s ability to function, including physical injuries, acquired chronic conditions such as Lyme’s disease, or events such as strokes.

That’s what happened to Dean Reinke, my friend who suffered an ischemic stroke 17 years ago. A competitive whitewater canoeist, Dean was in excellent physical shape, with the cardio-vascular fitness of an athlete — making him seem like an unlikely candidate for stroke at the relatively young age of 50. In fact, the night his carotid artery sent a blood clot caroming to his brain, he was less than 24 hours off the water from a six-day Canadian wilderness trip. It’s a matter of relief that he was home when it happened.

Strokes are extremely individual, making it difficult to predict recovery patterns. In Dean’s case, reasoning and speech were unaffected but the stroke permanently disabled his left arm and hand and changed his gait. He returned to his job as a computer programmer after six months on short-term disability. Although his therapist told him stroke patients typically take more time off work, Dean felt he could make better progress by returning to his life more fully.

This was the pre remote-work era, so Dean continued to commute, using a slightly customized vehicle. At work, he used off-the-shelf and improvised technology modifications and relied on his right hand for typing.

Six years later, Dean found himself unwillingly early-retired at age 56 with a decision to make: Compete with new graduates for computer programming jobs, or switch to something else? He made the switch, but backwards in time: By highlighting his expertise in “ancient” programming languages he was able to work as a salaried consultant on COBOL and Assembler until he retired in 2018, at 62.

These days Dean travels extensively, enjoys his off-the-grid cabin near the Boundary Waters, and frequents as many live music events as he can fit in. He also devotes several hours a day to churning out entries for the blog he started in 2010.

Now topping 25,000 entries and 5.3 million views, the blog has gained a reputation for presenting Dean’s somewhat salty commentary on what he sees as medical complacency in resolving the stroke puzzle. It’s a broadly-researched compendium on treatments and experimental alternatives, peppered with his own experiences in the recovery process.

What if you also needed to cope with a life-changing disability? Dean didn’t apply for Social Security Disability (SSDI), but that’s a path many take, particularly when working seems unlikely. If that were to happen, having a pre-purchased, long-term disability policy could provide a welcome financial bridge.

Although insurance can be arranged in advance, more specific strategies can’t be engineered unless a disability happens. In that case, Dean has advice: First, whatever the disability, talk with people who have gone through it, while also pressing your medical team for customized recovery protocols instead of generalized treatment guidelines.

And second, some tough love: “ ‘Don’t give up’ is too cliché,” he says, “but you have to buckle down. It’s not the end of the world. People have been living with disability for generations and you can also.”

Assuming your condition isn’t totally disabling, Dean’s approach could help you tackle the necessary career questions: Can you continue your current work — or is it time for a career change, retraining or even self-employment? What accommodations will help you stay in the game?

Dean notes that this isn’t the worst time to be a disabled worker: “As a culture,” he says, “we’re going in the right direction. We’re moving from pity to enablement when it comes to having a disability.”