If Lori Hall Steele could get off her ventilator long enough, she would have a heck of a story to write.
It's a tale involving a brutal disease, a questionable health insurance policy, a mortgage company going about its devastatingly matter-of-fact business and of several friends who are determined to share her plight with the world. They've built a web site called Save Lori's House, and are launching all the power in the blogosphere that they can to bring people to it, all in the hopes that their sick friend not have to go into this fight alone.
Ms. Steele, a 44-year-old divorced mom, is a freelance writer in Traverse City, Michigan. She wasn't one of those people who purchased a subprime mortgage gone bad. Ms. Steele hasn't been able to keep up her house payments because she has ALS, also known as Lou Gehrig's Disease. As anyone familiar with this disease knows, ALS turns people into statues that can only blink and breathe...and ultimately in most every case, not even that.
There is no cure, although people have been known to live for years with the disease. But complicating matters even more, Ms. Steele also has chronic Lyme disease.That would be bad enough and an interesting enough memoir, if Steele had the strength to write it, but she isn't just fighting for her life. In a few days, broke because of her health insurance bills and her inability to work, Steele is about to lose her house. She wouldn't mind so much for herself -- she is currently confined to a hospital bed and hooked up to a breathing machine -- but Steele worries about her young son, Jack.
Ironically, she wrote about Jack, now 7, on his fourth birthday in an essay that appeared in The Washington Post earlier this summer. It was written three years ago when she was perfectly healthy, but finally published several months ago after she was already gravely sick. It's heartbreaking to read now, in part because you realize what a gifted writer the world will someday lose, and especially because it's a story about mortality.
There's a scene early on in the essay in which her newly 4-year-old son has a conversation with his mother after watching the classic cartoon Bambi, which of course has that incredible horrifying death-by-hunter scene:
"When I'm 4," Jack asks, "will you still look after me?"
"Will I? Of course, of course, of course. I stroke his blond curls and tell him he'll always be my baby. But it's as if he senses some disclaimer from the universe."
"Mommy?" he asks. "Will you still look after me when I'm a grown-up?"
That looks less and less certain. For now, Steele just wants to look after Jack as best as she can now, which means saving her house, the only place he has ever called home. He is living there now with his grandmother, Steele's mom, who moved from Florida to watch over him. If they have to move out, Steele isn't sure what will happen next.
Fortunately, Steele has some people watching over her.
Several of her friends -- a growing number of freelance writers, editors and reporters across the country -- have been looking out for her for awhile. They held a fundraiser for her medical bills back in April. For what it's worth, I've never met Ms. Steele, but her plight caught my attention back then, and I wound up writing about it for WalletPop. And just yesterday, September 10, those same friends launched the aforementioned SaveLori'sHouse, where they're encouraging anyone and everyone to click on a link to Paypal and donate what they can, so they can soon go the mortgage company with a pail of money in hand.
These friends of hers are thinking big -- as I've noticed in discussions Ms. Steele's situation in a writer's forum that I belong to -- asking each other, for instance, how realistic it would be to contact Michael Moore, who is famously from Michigan and enjoys a good cause and could possibly bring some attention to her plight. She could be, after all, the poster child for what happens in a country that has a healthcare system that's falling apart as his movie, Sicko, last year demonstrated. And years ago, Ms. Steele copy edited his 2003 book, Dude, Where's My Country?
Steele's problems began in September 2007, and her slide from healthy mom to a deathly ill hospital patient has been a fast one. In September of last year, she suddenly was unable to move her feet. As a writer who had published more than 3,000 articles, she was, I imagine, grateful that at least her hands were still in working order. That didn't last long, however. Her paralysis, over the next several months, began spreading to her legs and arms. For the longest time, doctors couldn't decide what illness was destroying her body, possibly because she had two diseases.
Her health insurance carrier, in any case, never paid for any of her medical tests, claiming from the start that her condition is a result of a pre-existing condition. They made that case even before Ms. Steele had a diagnosis. When you see something like that it's all too easy to wonder what a country we live in. And I don't mean that in a good way.
On the other hand, there is an awful lot about Ms. Steele's story that one can feel encouraged about. Her health insurance carrier, it turns out, is not a big name company that we're all familiar with. One of her close friends, Kris Hains, a writer who is spearheading the Save Lori's House movement, tells me that it was "a policy Lori obtained through an online source, but I don't know the name." There is a cautionary tale in there, somewhere.
And thanks to our often-criticized government, Lori has managed to pay some of her health care bills because she now has coverage through Medicare and Medicaid. She has also received a grant that goes toward medical bills and comes directly from the Haven Foundation (started by legendary novelist Stephen King, who understands what true horror is: not having enough to pay your medical bills).
And, of course, one can feel good about Lori's story in just thinking about Lori herself. No matter what the odds, she plans to keep her promise to look after her son as long as she can draw a breath. Her friends, of course, also haven't given up. When you look at it that way, it's all too easy to think -- what a country we live in. And I do mean that in a very good way.
Geoff Williams is a freelance journalist and an author.
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