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.
