Disabled? Me?

cognitive-impairmentWow. You know that thing that happens not very many times in your life when you suddenly realize you were looking at a major situation all cockeyed, off by a 90-degree angle? That thing happened to me today.

It started out like a normal day, with an early oncologist’s appointment and then heading into work. In that appointment, Dr. Monco and I talked about what happened on my recent Nashville trip to investigate clinical trials. He agreed with starting radium-223 treatments by the end of the summer and waiting on clinical trials until my PSA doubling time shortens. We talked about the impact on my job of cognitive and emotional side effects, from treatments and meds. He doubled my antidepressant. A normal doctor-patient discussion.

But then the following conversation happened.

“At what point,” I asked, “Do we start thinking about disability?”

“I could write you a letter today,” he said, “That would get you full disability, based on what you’ve told me.”

That was the thing that happened today. I have since been a mess of thoughts and emotions. Foremost is the glimmer of hope of having something resembling retirement, even if it is only for a brief time. But time to write, to exercise, to rest, to travel, to visit people I care about. I’d always assumed disability would happen only when I was too enfeebled by disease or demented by medication to crawl into work anymore. Disability would be when I qualified for a handicapped parking hang tag. Or called in hospice.

This glimmer of hope was quickly engulfed by anxieties based on what I don’t know. Would disability be approved? If it is denied, how does that make me look at work by having asked for it? Do we have enough money to live on 60% of my income for some unknown period of time? How long can I be on disability? How does medical insurance work during disability? How does all this fit with the specter of Social Security, that goggle-eyed monster of insolvency, political ping-pong, and grinding bureaucracy?

At least two people in my cancer support group talk about how cancer forced them to give up their careers, and how empty they have felt since then. That is not my fear. My fear is of being unable to do my job yet still having to do it. 

I’ve been thinking about my cognitive decline, the difficulty I have with problem solving, decision making, concentrating, and remembering things, these on top of intractable depression. Add to the cognitive issues the imminent failure of my current treatment, me feeling much sicker as a result, and then joining a clinical trial. I can’t imagine working full time while traveling back and forth for a clinical trial in a distant metropolis.

Even in my present condition, I’ve survived chiefly because the teams I support at work have been diverted to something I have no role in. But they are now returning to their regular assignments. My work will heat back up. So I asked the question and got the surprising answer.

For the rest of the day at work I am preoccupied both by the hope of getting on disability and the fear of not qualifying, or of not being able to survive financially even if I can qualify. Hope and anxiety, and a nagging suspicion this is all premature and absurd. I wonder if I’m simply a wimp for even thinking about disability. For most of my life, I’ve thought of myself as lazy and a quitter, despite strong evidence to the contrary that even I can easily produce, such as earning a doctorate while working full time and teaching on the side.

The decision feels huge, exciting and terrifying, all at once, like my first time skiing down a double-black diamond slope in Utah, taking a job with a startup company, or finally shaving off the fuzz on my upper lip in high school.