THE BLOG
03/18/2010 05:12 am ET | Updated Nov 17, 2011

My Friend With ALS, He Died Quickly.

This Fall, Congressman Alan Grayson (D) of Florida said, "If you get sick, America, the Republican health care plan is this: Die quickly. That's right. The Republicans want you to die quickly if you get sick."

He's right. Although I'm not sure it's the Republican plan, they don't seem to have one at all. I think the insurance companies sure want us to die quickly though. I've had it up to here with them. This month alone we saw a case of denying coverage to a child who was too "fat" at four months of age. And then to a child who was too "skinny" at two years of age. Want to know who's uninsurable? Remember the old Armour Hot Dog jingle? "Fat kids, skinny kids, kids who climb on rocks. Tough kids. Sissy Kids. Even kids with Chicken Pox."

In December of 2007, my dear friend Jim G. was diagnosed with Lou Gehrig's disease, ALS. He died early Sunday morning the 27th of September, in his wife of 29 years' arms in their bathroom. Perhaps he had a heart attack or stroke and fell. Or fell and then had a heart attack or stroke. His legs had withered to mere spindles and his left diaphragm was paralyzed as the disease progressed.

Jim and his vivacious wife Peggy personified the American dream. From humble beginnings living in a trailer in upstate New York as young newlyweds in 1980, Jim climbed the corporate ladder, while Peggy stayed home to raise their two children.

By the time Jim had turned 50, their kids had left the nest, and their nest egg was more than adequate. They traveled, dined out, drove fine cars, enjoyed a country club life. It would have been easy to envy them, since my husband and I have three kids with severe autism and have endured three job losses in six years. Our nest egg is is long gone. But Jim and Peg were good people, so it was hard to feel anything other than love for them. When my two older girls were diagnosed with autism in 1999, Peg brought their then 14 year old son Jimmy to our house every week to volunteer in our in-home therapy program. I'll never forget that.

Jim left a Fortune 500 company a few years ago, and joined a small, privately owned specialty paper company in Cleveland. Then he got sick. And then he learned what happens to people who get sick in America.

1) He had an incurable disease with no approved treatment. He was sent home to atrophy, asphyxiate and die.
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2) He learned the vest he needed when his diaphragm gave out and the machine he needed to take in air at night cost thousands of dollars - and insurance only covered a small portion.

3) He found alternative treatments at Patients Like Me - none of which were covered by his insurance, much to his shock. He spent tens of thousands of dollars to prolong his ability to hold his wife's hand, to push his grandson's stroller, to walk across the family room to turn on the TV.

4) His small company didn't have disability insurance. Or much of a conscience. They withheld his bonus. They cut his pay. They dragged their feet signing his paperwork. They did not offer COBRA. They made his life hell and increased his already unbearable stress.

On the 24 th of September, his company agreed to pay back some of the expenses Jim had incurred because of their actions, through mediation. He'd had to hire an attorney to get them to do right by him. I'm sure that cost a pretty penny too. On Sunday morning his heart gave out, and he died.

At the end of his life, Jim was paying $850 for his own insurance, without prescription benefits. Peggy was unable to procure private insurance due to a pre-existing condition. She's now a 50 year old widow without health care, but with enough assets never to qualify for Medicaid in Ohio. It's a long time before she turns 65.

Jim died just as the disease was overtaking the slowdown the alternative treatments had offered. He died before he needed round the clock nursing care and a hole in his throat to breathe and a machine to speak for him - all of which would have emptied the nest egg he'd built for Peggy over decades of honest hard work.

You did the right thing, my friend. You died quickly. If only that weren't the only option in America.

Rest in peace, Jim. I love you.

Kim