Losing Well Part 19

Continuation of my series, Losing Well. Part 1 can be found here.


December 2015

Pulling the tigger on disability was difficult. I’d always defined myself by being better than my sighted rivals. Admiring that I could no longer compete was the worst symptom of RP I’d ever faced. It forced me to become a new person. A more realistic person.

For years I’d defined myself by my job. For years I was the Vice President, the manager, the boss. Now I was just Dad. I went from having a team of people do what I told them to working for my two kids. Over time I came to see my new role as just as important. Just as rewarding. At times, just as frustrating.

The upshot of going on disability was that I lost forty pounds in six months. I was under so much stress I couldn’t see how my job was killing me. Keeping up with the sighted world was killing me. It was time for a change.

The process of going onto disability was difficult. I had a lot of phone calls with my employer’s insurance company. They felt like I could go get another job at the bank. But they’d only guarantee my employment for 30 days while I looked for another job. It was hard not to see this a cynical ploy to get rid of the severely disabled. I declined the job search and moved forward on my disability claim.

I told my insurance company the truth; I could run one project at a time but not ten. I worked on a job that was the visual olympics. I told them that if they could get me a job that would allow me to run one project at a time, I’d go for it. They never got back to me because that job doesn’t exist.

The insurance company made my long suffering eye doctor fill out a ton of forms. They made him repeat over and over that I had RP and there was no real treatment or surgery and that I was legally blind. The insurance company didn’t ever seem to believe him or me. When I made the call to go out on disability, it was the end of a long battle.  My insurance company didn’t see it that way. They thought I could do more or try harder. They just didn’t want to pay out my salary over the next twenty years.

When I’d found out about RP back in 1999, I’d contacted my employer and increased my insurance coverage. My employer offered, for an increased premium, to bump their disability coverage to 60% of my salary. For an additional fee, they included bonuses. That’s the coverage I had when I went on disability. The coverage I’d paid them for. For over a decade. It must have been too much money for the insurance company. I crossed some threshold. I was their new loss leader and they needed to move me off their books. My battle had just begun.


Part 20 can be found here.

The Murkly World

My Long Term Disability insurance company wants me to go back to work. They suggested I do what is considered "under employment" for someone with my resume. I thought this was a transparent plan to make me voluntarily opt out of the policy (due to object misery). The insurance company sent to the State for an evaluation, hoping this would force me to make that decision. As I've documented earlier, the State didn't like the insurance company's plan and suggested I go back to college instead. Which I'm planning on doing.

I recently had a conversation with my "employer" (they don't pay me anymore, their insurance company does) of over a decade. They told me that I'm still employed and that I can be fired for violations of the handbook. I asked them if I'm allowed to seek other employment and they said that I wasn't. I pointed out to them that their insurance company was telling me I had to. My employer had never heard of that before and their first reaction was that I shouldn't seek other employment. They then spent two weeks researching. They came back to tell me that since it's the insurance company who's paying me, I have to do what they want me to.

I post this to show that, once again, there is no set process. My employer had no idea what their insurance company was doing. Private disability insurance is a murky world with now set rules. It's all a negotiation. Usually this works in favor of the insurance company. Those of us with real disabilities have to figure out how to turn the murky world they've built to our advantage.