What’s your sign?

What’s your sign?

Why reform? Let’s ask the 20

Our country’s health resources are allotted on the 80-20 model: 20 percent are old or sick and they use 80 percent of the medicine and costs. The other 80 percent are healthy, generally like their health plans because they don’t use them, and can go around screaming “I don’t want President Obamabutu from Kenya ramming his socialism down my dagburned throat!” But that only means they are five years, 20 years or 30 years before their medical event. Once they have their medical event, which is biologically inevitable, then they flip over to the 20. For changing sides, they aren’t issued new uniforms. Instead, the medical insurance industry sizes them up, fits them in the vice and begins its tightening. They turn and turn until the last flicker of carefree life leaves their eyes. And then they keep turning, because there’s more to get, turning and turning, systematically turning until you are six feet down. And once you are sealed tight in your box all safe and quiet, they will take the money they saved on you, that they extracted from your body, and they will buy themselves a congressman, who will be that much less likely to hear or understand the person whose medical event will occur tomorrow. World without end, amen.

However, in America we get opportunities to change things. One of those opportunities is now.

The public option would be a Medicare-like plan offered to those who freely choose it. It is the only feature under consideration that could innovate coverage and reduce costs.

A loud minority says we can’t do it — they are the same ones who opposed Medicare.

Call your Senators (Capitol Switchboard 1-800-826-3680) and the President (1-202-456-1111, or write a message at http://www.whitehouse.gov/contact/). Tell them you want a national public option now, no co-ops, no triggers.

A Conservative for Health Care Reform

A couple weeks ago, I heard Bush speechwriter David Frum make an interesting case for health care reform. It’s addressed solely to his fellow conservatives.

Frum says that if conservatives succeed in defeating health-care reform in order to limit government, they will win a Pyrrhic or self-defeating victory.

1. Health care costs will go on skyrocketing unchecked, and so will entitlements. Simple math points to a not-very-distant future when the government will naturally swell to its greatest size ever.

2. Government expenditures are hitched to health costs through entitlement programs (Medicare, Medicaid, Social Security) that make up the majority of the budget. Government finances will become unsustainable and collapse. At that point, tax cuts will become a thing of the past, never to return.

By opposing all reform, conservatives are working against their two sacred cows: limited government and tax cuts. That’s not even considering the social costs of throwing the aged and ill off of bankrupted Medicare and Medicaid.

I’m no fan of Frum’s ideals, but I felt a good measure of respect for him as he spoke. Imagine, discussing health care without flying spittle.

There needs to be something. Something besides the status quo.

At this point, the only credible scheme for cost-containment is a public option that competes with insurance companies and challenges them to run more ethically and efficiently. This public option (supported by public polling throughout the summer) should come without a waiting period or co-ops.

Call your Congressmen (Capitol Switchboard 1-800-826-3680) and the President (1-202-456-1111, or write a message at http://www.whitehouse.gov/contact/). Tell them you want a national public option, no co-ops, no waiting period.

Help me make it through the night

Early on I learned how to be the happy, productive cripple. After the first few years I learned that it’s not only easier on around me, but also useful to me myself. When you’re an activist, when you’re engaged and out there, they have to deal with you — but when your petulant and gloomy, at their first opportunity there are plenty of cold ditches they can dump you in.

With each new setback, I am can-do, even winning. Insurance company doubling back on its word to the tune of several thousand dollars? Why, I’ll pester them with phone calls daily… they won’t get that money until the collections company throttles it out of me. Multiple sclerosis spread to yet another limb? Why, more exercise, that’s the trick! I’ll even write a column about it this week, you’ll see.

But that’s all wearing thin in the face of today’s development. Today we brought home a new piece of equipment, a matte-black box that looks like the baby of a Blackhawk helicopter. Through a rigid plastic face mask, it’s going to forcefeed my breathing through the night.

I was diagnosed with sleep apnea. A few weeks ago I checked in for an all-night sleep test in a crazy wired Big Brother room in the hospital. When I did something wrong, a soothing woman’s voice broke in on a loudspeaker to correct me. The plastic mask is a CDC-meets-Hannibal Lector contraption that unceasingly blasts air into your face and makes you pay for every breath that you mistimed. I was up half the night.

In the morning the soothing woman came into the room to tell me my sleeping barely sufficed her parameters. God was I glad to get away from her.

But she sent me a souvenir, these several weeks later. To her credit, it’s important I use it because just last week a study showed that sleep apnea dramatically increases the mortality of men as they enter middle age and older.

And I’m game. Like I said: happy, productive. But I am dreading what comes an hour from now.

You see, I cannot move. That’s the MS. Once I’m in that bed, with or without an alien thing all over my face, that’s it. My wife, sweetly helping me at every turn, is an insomniac. That means I’m down for 10 hours, 12 hours at a time while she recoups rest. My operable hand cannot loosen the living, sucking mask once it’s double-buckled around my head.

Until now, every day I have awakened at five in the morning, and through a microphone headset I worked or read on a laptop computer for 3-7 hours until I can sleep again. But there’s no seeing or talking around the monstrosity I’ll be wearing tonight. I’ve already made up my mind not to wake her up. It will simply be gut-check time all alone in the dark, psychologically holding back my panic, and hopefully I will fall back asleep quickly.

They say in a few weeks you adjust to the thing. I know thousands of people use this machine, and perhaps even by tomorrow night I’ll be chuckling over my primitive misgivings. But until then I’ll be feeling like a cross between Malcolm McDowell in Clockwork Orange, and one of Dick Cheney’s torture monkeys with wires clips on my gonads.

Wish me deliverance through the night.

Had to stop dictating or the words would make me cry

“You are the stars and the world is watching you.
By your presence, you send a message to every village, every city, every nation.
A message of hope. A message of victory:
The right to play on any playing field?
You have earned it.
The right to study in any school?
You have earned it.
The right to hold a job?
You have earned it.
The right to be anyone’s neighbor?
You have earned it.
The days of separation and segregation are over!”

Eunice Kennedy Shriver, founder of Special Olympics

Thanks for believing in us before everybody else — RIP

And the lame shall inherit the cockroaches

“Only trying to shut him up”: Woman cleared in pillow suffocation of disabled husband — BBC

Tracey Roffey’s pillows come in chocolate, vanilla, and tequila lime.

Why do we need health care reform? MS drugs start at $22,272 per year … that’s minimum — About.com Multiple Sclerosis blog

Why critics of a public option for health care reform are wrong — Robert Reich

REALLY IMPORTANT: Call your Senators and Congressmen (Capitol Switchboard 1-800-826-3680) and the President (1-202-456-1111, or write a message at http://www.whitehouse.gov/contact/). Tell them you want a national public option, no co-ops, no waiting period.

New stem cell treatment helps 80% of early MS patients in study — Scientific American

Ennis (Texas) Lions football coach fights MS, may go abroad for stem cell treatments — Houston Chronicle

“Disgraceful” South Carolina disability housing overrun by insects and rodents, lack of food and medical — Myrtle Beach Sun News

And the lame shall inherit the cockroaches: South Carolina Governor Mark Sanford, protecting us from sin and stimulus funds

Speak Up: Your Guide to Self-Advocacy — Disability Scoop

Empowered: Strong disability attendance at Comic-Con — Hero Complex blog

US to sign UN treaty on disability rights — ABC News

Solution to California’s budget crisis: Legalizing and taxing marijuana? — Fox News

The Green Cross: Medical marijuana moves mainstream — San Jose Mercury News

Brain Develops Motor Memory for Using Prosthetics — ScienceDaily

VIDEO: Larry Baker, 98-year-old skydiver on 8th jump, at my dropzone! — Jackie Bange, WGN-TV (footage by my jump instructor, Nathan Dexter, Chicagoland Skydiving Center)

50

It was a few weeks ago I watched the sunset, not a particularly dazzling one, but poignant all the same. I watch most sunsets, drawn to them by something unnamed and unspoken in me. Each day, those few moments freeze me in place, all the monkey chatter in my mind and mouth temporarily silenced. The sunset plucks a deep animal chord in me, one of the edges left unfinished by evolution or whatever.

This one I have in mind was a standard glaring yellow, conventional but handsome. It was unremarkable, really, except for it being June 25. That afternoon had roiled with news of death.

I was staring at the sunset that Farrah Fawcett and Michael Jackson would not see. Hm. I watched for a minute or two more.

While I sat there, averting my eyes to the brilliant gold seam outlining the few bands of high purple clouds that evening, I thought I’ll be doing this again in another few days. One of my cousins had learned his cancer had reappeared and spread to his liver. Hospice was called. He was going fast. They moved his bed to the living room window, where he might be watching this same sunset with me.

I thought in a few days that I would be staring at another sunset, even another mediocre one, because that one would be my cousin’s.

A few hours later I got a call. My cousin and Michael Jackson and Farrah Fawcett all shared the same sunset. The one I had watched too long that day, that left yellow and blue spots in my gaze.

My cousin was 50, just like Michael Jackson. I suppose his death wasn’t as shockingly unexpected as Michael Jackson’s, because he had been battling cancer for the better part of a year. He had at least seen his two children grow to young adults.

But what is it about that number, 50?

You see, this is the second cousin I’ve lost this year. The other cousin, from the other side of the family, died in February. He dropped dead in a store on Monday morning, out on the far loop of his sales route, somewhere in snowy Iowa. It was a massive brain aneurysm. Wholly unexpected, like being hit by lightning during a snowstorm.

He too was 50.

His daughter is almost adult, a freshman at Ball State, there on a scholarship. They were estranged, but he was working to patch things up, always working to patch things up.

He and I had been estranged too, not from temperament but from circumstance. He was in sales, he traveled a lot of lonesome miles and years on the Plains. But recently he moved to my area and we got in touch again. He had lost weight and looked tall and lean like in his baseball days. The first night of the Beijing Olympics, he and my brother brought a pizza and we ribbed each other all evening. It was so corny, and great. I think I might have had him convinced to skydive with me this year.

50, 50 and 50.

Anyway you slice it, 50 is not young. Dying at 50 is not a tragedy, not when 5-year-olds and 12-year-olds and brand-new parents die every single day. But 50 is not old, either. At 50 in the US you still expect another 20 years of life at least, which is time enough to watch another generation appear and grow.

Is there a lesson in events like this? In the number 50? Nah, not really, except for the one we all ought to bear in mind anyway: that nothing going forward is a given. Not your health, not the person next to you, not even tomorrow.

For instance, a month after my cousin died, I learned about the death of somebody else I know. A decade shy of 50, he killed himself. No note, no apparent reason, no idea among his circle of friends. It was shocking, especially to my brother: this was one of my brother’s lifelong friends from school — and my cousin who suffered the aneurysm was my brother’s roommate.

So, you can see why lately I’ve been going about in a cloud of unreality, with a tentativeness and distrust of what seems to be definite before me. Spooked by 50, am I? Will I be tormented by nightmares, visited by talking ravens, develop physical tics and desperate craven eyes as I myself approach that haunted number, the mid-century mark, what the Romans chiseled on their mausoleums as “L”?

I doubt it. I suppose all this foreboding simply translates into what’s currently called “living with gratitude.” That’s not such a bad thing, is it?

But on the other hand, this evening I was scrolling through Google headlines, and happened to see a profile of the late TV pitchman Billy Mays, he of perpetually youthful beard and unflaggingly megaphonic voice. Mays too passed away a few weeks ago … and at the age of 50.

I don’t recall the sunset that day, but here’s wishing it was the same blinding orange as the Oxy Clean cleanser he used to hawk.

Mom, cracking my knuckles won’t give me arthritis!: 11 Health Myths

Mom, cracking my knuckles won’t give me arthritis!: 11 health myths that may surprise you — Well Blog

Public option health care reform would help MS patients — Newport News Daily Press

ABOVE: Open your mouth and say $200 co-pay (Photo: Adrin Snider, Daily Press)

Insurance that’s bad for you: When high deductibles discourage treatment — New York Times

We are at crunch time on this: Call your Senators (Capitol Switchboard 1-800-826-3680) and the President (1-202-456-1111, or write a message at http://www.whitehouse.gov/contact/). Tell them you want a national public option, no co-ops, no waiting period.

COGAIN (Communication by Gaze Interaction) project develops gaming-with-gaze tech — European Commission Headlines

Veterans Affairs Receives Surge of Disability Claims — New York Times

Choosing a college for a student with learning disabilities — McClatchy News

National Endowment for the Arts hosts summit to promote artistic opportunities for disabled — 7th Space Interactive

Popular Sacramento burger joint to relocate due to ADA suit, others struggle to comply — Sacramento Bee

Brian Hahl, tireless fundraiser for MS, dies training for his 20th ride — Lehigh Valley Express-Times

Who says drummers just trash hotel rooms? Mass drum-in raises thousands for MS — London Daily Telegraph

ABOVE: 582 drummers drumming — Stick It to MS (Photo: PA)

Crank up Heavy Load, the disabled punk band — CNN

GTFO! Iowa co. running forced labor camps of developmentally disabled

Every once in a while I wonder if I’m being shrill. Then I read something like this: Henry’s Turkey Services running forced labor camps of developmentally disabled — Des Moines Register (h/t PatriciaE Bauer.com)

Disability groups line up behind Sotomayor for Supreme Court — Disability Scoop

Newest beta interferon MS drug earns FDA fast-track status — Boston Globe

Community Housing vs. Institutions: Illinois fights it out — Chicago Tribune (h/t Disability Scoop)

Pennsylvania clinic introduces robo-legs walking therapy for SCI — KYW -AM

VIDEO: Award-winning robo-legs in action — ReWalk, by Argo Medical Technologies

Tongue wheelchair controller on the way — MedGadget

Electronics recycling biz keeps disabled working (with VIDEO) — Karen Meyer, WLS-TV Chicago

Buy from Recycling Avenue (company’s eBay page)

Do Canadians have to wait for health care? Sometimes, but would they change to a US system? No way — Economix blog

Call your Senators (Capitol Switchboard 1-800-826-3680) and the President (1-202-456-1111, or write a message at http://www.whitehouse.gov/contact/). Tell them you want a national public option, no co-ops, no waiting period.

British MS sufferer to skydive for charity — Worthing Herald, UK

African-Americans and MS, Monday, July 13 free teleconference (courtesy of Midwestern chapters of the MS Society), call (800) 363-6915 before 7 p.m. start time, conference ends 8 p.m.

The Wheels in the Sky

What is it like to walk on air?

The tallest building this side of the world, Sears Tower in Chicago, on Thursday opened The Ledge. It grants you the sensation of hovering 103 stories above the ground, without ever leaving your feet.

Best of all, it’s wheelchair accessible!

The Ledge consists of four reinforced glass bays that jut out from the top of the building. The engineers got the idea from all the hand- and face-smudges left on the Skydeck windows every night. Now they’ve designed it so you won’t be limited by conventional windows.

The retractable glass cubicles let you stand, lie, jump, even tap dance 1,353 feet in the air. I say, man, let me at it!

Of

course, the law of torts and liabilities would nudge the engineers to make this glass strong — 5 tons strong.

OK, 5 tons, that’s a lot, but it’s only a number. Like “a trillion dollars” — something so large I can’t wrap my head around it. I think, That’s bigger than a hundred, right?

So, I got on the horn. 5 tons, eh? But will it handle a guy in a wheelchair?

Nowadays, you and I both know that “handicap accessible” means just about anything … so much so that, to me, it means almost nothing! Don’t tell me “ADA accessible,” tell me what adaptation features you offer. Seriously, I don’t want to hear “the Grand Canyon is accessible” (what, do you have a ramp that goes all the way to the bottom?): I want to hear what specific provisions you’ve made to get me over the thing … before I drive all the way out there and have to hear “See that sliver of red rocks way over there, Abey? Oo! Ah!”

I told the helpful lady who answered the phone that I already knew the Ledge would handle 5 tons. But will it handle a man and wheelchair of 500 pounds? (I rounded up from 380 = a 200 pound chair plus my 180.)

“Please hold,” she said, “let me check that.”

A-ha! You see? What, then, is truly heavier: 5 tons (roughly 11,000 pounds), or a 500 pound wheelchair guy with a lawyer? Better think that one over, while I listen to the Jeopardy theme and wait on hold.

She came back on the line. “You’re in the clear.”

Wait! Can I actually get out there? From the news footage I’ve seen, it looks like I can. But are there any thresholds or impediments at all?

“There’s an incline,” she said, “but it’s ramped.”

So there — trumpets please — officially and incontrovertibly, the Sears Tower Ledge is waiting for us to experience it!

But the entire city is waiting for you. In the old days they said Chicago was a wide-open town, because there was always some of this and a whole lot of that going on, but today it’s wide-open in an entirely new and better way — now to people with disabilities.

From everyday accommodations in mass-trans and the Loop, to big-ticket venues like Soldier Field for Chicago Bears games, to special events like the holiday Parade of Lights, Mayor Daley, Cultural Affairs Commissioner Lois Weisberg and others place people with disabilities front and center — and I’ve experienced this personally again and again.

Come to my city! And if you’ll let me know when you’ll be around, I will greet you out on the Ledge.

[Photos by Brian Jackson & Al Podgorski/Chicago Sun-Times]