Smart Enough

                             

When I met my perfect partner at age 51 it never occurred to me that I might end up taking care of him. The fact that he was 55 was no biggie. We were both still kids! At least we felt like it at the time.

Now, several years later, his medical issues stand out as markers in our life together. We spent New Year’s Eve 2005 in the emergency room of a large university hospital as a young ophthalmologist diagnosed the shadowy vision in his left eye as a central retinal vein occlusion, for which there was no treatment and no therapy. Five weeks later he was blind in that eye. Four months later he got shingles. Christmas 2006 he was diagnosed with hepatitis C. The following year he suffered from a serious infection in his good eye AND he lost his job. He was starting to remind me of those used Volvos I favored when my kids were small; as soon as I took ownership they started falling apart!

And in November 2009 he was diagnosed with hepatocellular carcinoma – liver cancer – caused by the hepatitis C that he put off having treated after he lost his job. Another holiday season made memorable by illness.

Thus began my extremely perky audition as a blogger for an online caregiving company. Organizing my thoughts into a manageable unit is torture for me, but for a couple hundred bucks a week I was sure I could do it. I didn’t get the job (they decided to stick with caregiving for aging parents only) but I did stay fairly perky through my sweetheart’s cancer surgery and recovery.

Eight months later I fell into a hole. 

After more than three years slogging its way through the legal system my sweetheart lost all chance for a legal settlement from the large railroad that gave him the shaft after he told them he was sick with hepatitis C.

That wasn’t the whole story. The whole story couldn’t be told because his case was deemed to be so without merit that no reasonable jury could ever rule in his favor. That’s called summary judgment. One federal court judge granted summary judgment to his former employer and a panel of three judges on the Eighth Circuit Court of Appeals affirmed.

From our first meeting – a movie date at the Riverview Theater – it was clear Mike’s job was important to him. A short-ish guy with a chest bigger than I’d ever had my arms around before, he had quite a bit of equipment hanging from his belt. He told me he was on call 24/7 and later I found out it was true. As the administrator of the employee assistance program for a large railroad, he’d receive critical incident calls in the middle of the night, answer calls on vacation, and later even take calls when at the doctor.  

Mike had been a rascal and worse in his youth, but by the time we met he’d matured and mellowed, paid his dues, turned his life the right way, and become a thoughtful, hardworking man. He’d been in his job at the railroad for several years and after a series of jobs at non-profits, he planned for this job to last until retirement and to provide him with a bit of security. It didn’t work out that way. He lost his job at age 59.

When we received the appeals court ruling my emotions ran the gamut. At first only shock and disbelief, which was good; I was helping my two grown daughters with separate long-distance moves, and a mother in crisis would do more harm than good.

But as the first week wore on I fell into a hole. It all washed over me, everything we’d been through together, all his issues with work and illness – figuring out how to manage work and travel when his vision was changing, trying to decide if he should take medical leave (the last administrator to do so had lost his job), trying to appease his boss who constantly badgered him for confidential client information, being diagnosed with hepatitis C, losing his job and having to put off hepatitis C treatment while he tried to support himself, losing the first court judgment, getting cancer, trying to get health insurance after his COBRA had run out – I’d been there through it all. I probably knew more of the true story than anybody else.  

Mike wandered around, looking hollow, and I just got madder and madder. I looked up everything I could think of. I wanted to figure out how this happened. I wanted to figure out if there were any options, any more chances to be heard. 

I’d wake up at three in the morning, my mind racing. At five I’d get up and start writing things down. On Mike’s teaching days at our shared workspace I’d spend my time at home doing more research. The more I found out the more outraged I became. I wasn’t just mad anymore; now I was almost sick – from too little sleep, too much crying.

I learned that there was only one condition that was automatically covered under the Americans With Disabilities Act, upon which much of Mike’s case was based, and that was HIV/AIDS, because of the discrimination connected with it.  

I learned that more than 3 million people in the U.S. are infected with hepatitis C, most of them baby boomers who unknowingly contracted the disease from using drugs or having blood transfusions before screening was improved in the early 1990s. 

I learned that the discrimination connected with hepatitis C is a major threat to curbing what is now considered an epidemic.

I also learned that the Americans with Disabilities Act had recently been overhauled by Congress in order to restore its original intent of preventing discrimination against people who were disabled in some way but still able to do their jobs. In the decades after being signed into law by the first President Bush in 1990 more than 90% of ADA claims were thrown out of court.  Instead of being about discrimination the ADA ended up being about proving that you were “disabled enough” to be protected from discrimination but not “too disabled” to do the job.

The new ADA widely expanded the scope of individuals covered by the Americans with Disabilities Act and reversed a decade of Supreme Court precedent.

But it came too late for Mike.

The federal court judge ruled that Mike couldn’t have been discriminated against because his monocular vision and hepatitis C did not “substantially limit” any “major life activities”, which meant that  he was not “disabled” and because he was not disabled he couldn’t have been discriminated against.

Now we’re making sense.

The court rulings stated that Mike had “not provided medical evidence detailing a substantial loss of depth perception and visual field” and there was “no medical evidence that his difficulties were permanent.”

The guy was permanently blind in his right eye! No amount of compensation by his left eye would ever restore his depth perception and visual field! (He would certainly never be able see a movie in 3D.)

           

Regarding protected client information his boss had continually requested, the court ruling stated that because Mike “had refused these requests on several occasions without experiencing recriminations there was no causal connection” to him losing his job.

My head nearly exploded! How can they do that? Four men, in their jobs for life, making error-filled rulings based on a tiny piece of a story. How can they do that? Well, duh. They can do that because they can do that. What are we gonna do. There’s nothing we can do. 

On weekends and evenings I’d try to take walks with Mike. Dragged myself out. In a fog I forced myself to make soup, clean up the house. One night we watched a movie. 

From the start I wanted it to be over, wanted to forget about it, wanted to move on. Finally I decided  I needed to assemble all my research and notes into some sort of whole, and then I would send it to everybody I knew.

I started to feel better.

Mike’s my guy. We knew early on we were right for each other. He didn’t mind that I’d fudged a tiny bit about my age on match.com or that I wore overalls all the time, even on dates.

When I complained that no one took me seriously, no one thought I knew anything, he made a statement that will forever stick with me. He said to me, “You’re one of the smartest people I know.” 

No one had ever said that to me before.

As a kid I was smart, but in a non-linear way and it didn’t always show. When it did show it was used against me later when it didn’t: “You have the highest IQ of all three kids. Why don’t you apply yourself? You have no confidence!”

Previous partners had not expressed much pleasure in my brilliance. Mostly they sounded like my dad snarling, “You think you’re so smart,” as he blamed me for all current and future ills of the entire universe because I’d voted for Bill Clinton.

When Mike said, “You’re one of the smartest people I know,” those old grooves of childhood inadequacy started to change.

But man oh man, I was not smart enough for this. I was not smart enough to leave the good girl behind and say to Mike’s attorney, “What exactly do we have to do to win this?” 

I was not smart enough to realize how really skewed the playing field is.

It all comes down to one man and his attorney versus a powerful company backed by a team of attorneys. And one single judge, a former Marine, born in 1929, who acts as both fact finder and jury, and who sometimes serves with the three affirming judges on the Eighth Circuit Court of Appeals, the most conservative federal appeals court in the U.S.

And an Act of Congress that came too late.

I’m just lucky I’m so smart. Smart enough to be happy Mike’s alive and smart enough to convince myself that we can start over in our 60s and live happily ever after.