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I have MS, and write the "Abe Munder, the Wheeled Wonder" column: TheWheeledWonder.com

ABE MUNDER, THE WHEELED WONDER

Fresh
August 15

FDA APPROVES FIRST HUNTINGTON'S DRUG

FDA Approves First Drug for Chorea in Huntington's Disease, MedPage Today

Disaboom Raising "Unheard Voice" of Disabled at Denver Convention, CNN

World-Class MS Information at the Touch of a Button, Medical News Today

Obituary: Bert Shepard, 87, baseball's only one-legged pitcher, LA Times

Bert Shepard: P-38 pilot, WWII POW, Washington Senators pitcher,
semi-pro manager, typewriter salesman, engineer, golfer, father, grandfather

Kansas Factory Finds Success With Blind Workers, McClatchy Washington Bureau

Thinking About The Unthinkable: characteristics of disaster survivors, Well blog
(Read this fascinating, and practical, article.)

August 04

OUT OF THE DARKNESS

I love a good story, so I have to tell you about this.

Elizabeth Goodyear loves a good story, too. The thing is, she's 101 years old and has bad knees, so she doesn't get out of her New York apartment much. And a few years ago, she lost her sight, so she can't read the books that line her walls. But this is no pity party, because Goodyear has the spark of life in her, the one that attracts people like moths to a flame (you know what I mean). No, Elizabeth Goodyear lives at the center of something very good.

Put simply, people come to read to her. Many people, of all ages and backgrounds. A yoga instructor, a realtor, a nurse and others. All volunteers, not affiliated with any organization, though most now since go by the title of "friend" -- one who has moved away, for instance, calls Goodyear every week to read over the phone. At any one time, she'll have several different books ongoing.


(Credit: Josh Haner, New York Times)

It just kind of sprang up, this reading circle of friends. A neighbor named Alison West, who is two generations younger than Goodyear, began checking in as Goodyear grew frail, "to kiss her goodnight each evening." The two had done favors for each other before, and now West learned Goodyear was having difficulty affording rent and wages for her home health aide. West held a fundraiser to meet the immediate needs, and also sent out a message about this woman who loves lively conversation and a daily chocolate, a woman who has led a brimming-full life.

It's true, Elizabeth Goodyear's life would be the envy of most of us. Born in a Philadelphia suburb during the Teddy Roosevelt administration, she migrated to New York City as a young woman, lured by the bright lights of Broadway. She studied at the American Academy of Dramatic Arts, and worked in "the business" (as actors call it), mostly behind-the-scenes, throughout her life. That includes 20 plays she wrote or cowrote, two of which made the stage. Along the way, she rubbed elbows with Duke Ellington, Gypsy Rose Lee, George Balanchine, and Martha Graham, who caught her attending one of her classes while hung-over, and gave her the workout of a lifetime!

[See a story slideshow, narrated by Elizabeth Goodyear.]

One of my favorite aspects of this story is that West particularly, but also the others, recognized the wonderful person in their midst. They see Elizabeth, not an Old Woman. They see through generational lines. Perhaps that sounds like no big deal, but I'm not sure how many people can actually do this. I see some smirk or curse the old man in a hat who drives so slow and straight, and it makes me cringe because there's a good chance that guy was at Normandy or Inchon doing things that the plump softies of my generation can only imagine through video games.

In return for their insight, these friends are enriched by Goodyear, a one-of-a-kind personality who is obviously making an impact on many lives.

West's message was the beginning of Goodyear's salon. That's what it is, a salon. People drop in daily, some without books but instead with pets, gifts from abroad, ideas to discuss, and always, dark chocolate.

Goodyear says, modestly, "Usually there's something going on here. It's strange. You'd think if you got to be 101, nothing much would happen. But it does."

"I don't know how I ever managed to do it," Ms. Goodyear said of her numerous relationships.

"You hook them in," Ms. Sandleben teased.

"They come," Ms. Goodyear responded, "and for some reason, they always come back."

[Source: In Strangers, a Blind Centenarian Finds a Literary Lifeline by Sarah Kramer, New York Times, August 1, 2008.]


Postscript: I think I just went through a tornado. An hour ago, in the middle of writing this. Everything A-OK. Wow.

July 30

THE PATH THAT'S TRUE

While researching another story, I stumbled upon this news. Disability activist, lawyer and writer Harriet McBryde Johnson passed away in June at age 50.

Johnson wrote a pair of prominent articles for the New York Times a few years ago; plus a memoir, Too Late To Die Young; and a young-adult novel called Accidents of Nature. The one that really made an impact on me was Unspeakable Conversations, when she faced off with Princeton bioethicist Peter Singer, who is infamous for arguing for the euthanization of babies born with birth defects.

There, the depth of her intellect and her principles were apparent. Yet there was no grandstanding, none of the shrill diatribes or sheltered truisms we've come to expect when this kind of explosive issue is discussed. She didn't need that to stand her ground.

Instead, her observations were clear-eyed and nuanced. The details that stuck with me weren't searing debate points or sarcastic remarks, but how genial she found Singer to be (remember, he is also a prominent spokesman for animal rights). Her depiction differed so with my expectations, that as I followed their conversation I felt the hairs raise on my neck. Killer and Killed facing one another across a desk, one step away from Fellini.

Her strength of vision made me feel like a mere dabbler. Reading the tributes of others, I find that I'm not alone in this regard.

While her work should be emulated, it was Johnson's attitude that taught me something. McBride was afflicted by a form of muscular dystrophy. Her body sat small and hunched in her wheelchair, shaped by the years with her lifelong condition. She was probably a peculiar sight to most eyes.


Harriet McBryde Johnson

Her appearance was something she addressed forthrightly when introducing herself to us in her articles. She didn't gloss over, but detailed her physique to us. She framed her image matter-of-factly and boldly in our (her readers) minds ... because this is me. She was comfortable with her body, even liked her body, and was confident within it ... because this is me.

This is me, as I am. Can you, Peter Singer or anybody else, deny my humanity? Can you declare me any less human than you? You cannot, because I won't let you ... because this is me.

That, to me, is a powerful realization. It underscored to me something that I already knew, that we all know -- only in Harriet's case it was brought out in stark relief. That we are all individuals. We make our own ways, with a billion different paths. Harriet went one way. Oscar Pistorius, the Blade Runner, and Josh George, the wheelchair racer, go in different ways.

Me, with my slowly changing body, I've got to go along another. It's a challenge, but it's mine, and it's all good.


A Harriet McBryde Johnson Reader --

A New Mobility blog notice of her passing

Unspeakable Conversations, New York Times, February 16, 2003

The Disability Gulag, New York Times, November 23, 2003

Too Late To Die Young: Nearly True Tales From a Life

A fun piece in Ouch! a few weeks before she died

Articles and remembrances of Harriet McBryde Johnson

Scroll to the bottom for a list of Harriet McBryde Johnson's online works to read

July 23

YOUR MS GUILT: 7/24 WEBCAST

On top of everything else, MS and every other affliction can make you feel guilty. Imagining what you're missing. What you're putting people through. Whatever other crazy corners of the mindmaze your brain can crawl itself into.

This live Thursday night webcast features experts discussing the reasons for such guilt, and more importantly, the strategies that might help you avoid such negative thought patterns and harmful stress. At the end there is time for your own questions.

The hosts, HealthTalk, will give away three iPod nanos to those who intend (for some reason, limited only to U.S. residents -- I guess you Canadians get free meds, so the rest of us get to claw at one another for a few delicious-looking MP3 players. Take that!)

This event is free. If you can't make it tonight, go to the HealthTalk.com website for an archived copy of this and other programs.

Date: Tonight, Thursday, July 24, 2008

Time: 5:30 p.m. PDT / 6:30 p.m. MDT / 7:30 p.m. CDT / 8:30 p.m. EDT (they suggest arriving 10 minutes before starting time)

Location: http://www2.healthtalk.com/go/multiple-sclerosis/webcasts/letting-go-of-your-ms-guilt

To participate, you'll need Windows Media Player for either Windows or Mac: http://www2.healthtalk.com/go/corporate/webcast-player-download-instructions

July 15

MIGHTY FORCES

One day I wake up feeling like I got hit by a ton of bricks. The next day, I'm leading a charmed life again. Maybe they need to up my medication.

Let's think of a charmed day, shall we? One that occurred a little over two years ago. In an earlier column, I described the second greatest Easter story ever told -- well, that's what it felt like anyway, receiving a donated $25,000 wheelchair on Good Friday. Does it sound foolish to say it seemed as if I'd been struck by lightning, singled out by something improbable and much greater than me? It's difficult to describe such a magnificent and strange event without using this many metaphors, although one thing's for sure: lightning doesn't strike twice.

Or does it? Gather round, readers, for the third greatest Easter story ever told -- and for the reason I'm telling it now in July. It's a story of what can be accomplished. Maybe it will get some wheels turning out there.

This story is about abundant and unexpected blessings, and that's how it starts too. I am blessed with wonderful neighbors. My wife and I keep in touch with them by publishing a local newsletter, and through other area groups. These wonderful neighbors include the family next door, who are fantastic people. Tim and Ali are 11 and 9, and to my eyes, bright and dazzling as stars -- every time I seen them, I smile. I hang out with them all the time. Of course, they are a reflection of their parents. Dave works long hours to provide, and in his free time is an amateur naturalist and historian: great for Tim, a hearty kid going through his World War II phase. Karen holds down an evening job as a counselor while she homeschools the kids to several grades above their age levels.

You would think that would wear her down. But no, she's not content to confine her efforts in-home. That's why I answered the door one day (thank goodness the Masculine Munder Physique was safely shrouded in a robe) to find Karen on the other side of a movie camera.

"Karen, what are you doing?"

"Making a movie."

I wasn't going to ask the obvious. I feared the answer. (A science project for the kids? What, animals in their natural habitat?) I folded my paws, er, my arms.

"Smile," she said through the lens, "I'm nominating you for Extreme Home Makeover."

So incredulous was I that I rose from my chair. I thrust out my chest, brandishing my arms with righteous indignation. Extreme Home Makeover, I declared, is the TV program where communities and businesses join forces to improve the homes of society's most beleaguered and downtrodden citizens. Rather than benefit from the largess of others, I will contribute instead!

That's what I wanted to do. What happened instead was Karen blew past me, filmed my entire house and narrated (beautifully, I might add) an entire spiel about how the Munders love their community and their community loves them right back ... while my wife and I hemmed and hawed like deer not just caught in the headlights, but hauled downtown and booked at central station.

It was a flattering gesture, to be sure. However, like I said at the time, there are families much more needy than my own. And sure enough, Karen's videotape generated no replies. There are simply a lot of families devastated by medical hardships.

But more importantly, what an affirmation this was of the true friend we had living next door! Yet we had no idea of the depth of that friendship. Karen and family had bigger surprises in store.

The following year, we traveled on extended business to Texas. While away, Karen planned to surprise us with a home makeover of our own. She began organizing volunteers and enlisting local merchants. As the scale of plans grew larger, it was decided that Karen call us for permission. Once again, we were surprised, but had to decline. We believed her efforts ought to benefit a family more needy. She understood, and reluctantly shelved her plans.

A week later, Karen called back. Someone at her church, responding to the (expired) call to volunteerism, had obtained flooring that Mohawk Industries was going to destroy. Karen wanted to know if we would be angry accepting the floor anyway. Hardwood flooring, headed for the dumpster. I was (pardon me here) floored. No, in that case, bring it on!

I know little of what happened afterward. A whirr of spontaneous generosity, astounding to contemplate. A local church got behind the project in a big way. People whom I didn't even know donated funds. The youth group trooped to my house over and over to volunteer. Other parishioners did the same, working alongside my neighbors and relatives, day in and day out. They were joined by businesses large and small, from Mohawk to the local Home Depot and Century Tile, that donated materials.

On returning home, these good people crowded our yard to welcome us! (Are we on a game show?) They surrounded us as we entered, wide-eyed.

  • The blonde wood flooring is elegant and spacious. Driving and steering my wheelchair is much easier than on the old carpeting.

  • They painted half of the rooms. (My wife got to pick the colors, from Texas.)

  • The kitchen was expanded for accessibility. The open floor plan lets me open my own refrigerator for the first time in years. I was three years old again: simply opening a door made me smile!

  • My sister and brother-in-law widened and remodeled the bathroom. Now it's attractive and more accommodating of my wheelchair. Our lives are better for it, period.

There's a final touch to mention, a special one.

We once heard Anthony Hopkins give advice to young actors: Be bold and mighty forces will come to your aid. The striking phrase made such an impact that we mounted it on the wall ... actually taped it there on computer paper, to see how it might look. Honestly, it was pretty tacky! An experiment, not meant for outside eyes.


Hopkins

One of our neighbors, a busy father named John, saw it. He took the time to cut painting stencils in detailed Gothic lettering, and now it looks majestic -- very much like those colorful and muscular WPA murals we can admire from the 1930s, John's work is a bold emblem that captures a unique moment of community spirit.

I don't know where the lesson lies in all this. I'm still digesting it. My wife and I are just normal Joes, modestly successful at what we do, but neither of us set the world on fire like we planned in our youths. Yet here dozens of people, many of them strangers, labored to do so much for us. Huh?

I think the answer must lie somewhere in that phrase. Mighty forces. Penned by British writer Basil King, depicted by American teacher John, each morning I wonder at it, enshrined overhead. It reminds me about what can be accomplished when ... when what, exactly?


"Be bold": writer Basil King

At first I thought these mighty forces were quasi-mystical powers, more theoretical than actual, to coax us away from inaction and fear, to not worry so much and take the leap -- the Charlton-Heston-in-The-Ten-Commitments way of saying you'll never win if you never try. Also, as a Christian, I inevitably tie it back to God, that He will bless our endeavors.

Those could both be true. But I think there's another component, a less ethereal and more earthly one. These were humans who embarked on this project, after all, and humans are complex, with a multitude of motivations. Why, why did they do it?

One answer is dumb luck. I happened to make my home amongst a group of big-hearted people. Another, is when we engage others and try making a difference in their lives, we might be repaid in unexpected ways. Certainly, I'll be the first to say that nothing I've done merited anything like what I received. But that attests to what I'm saying. It's not a one-for-one trade-off, doing for others. It's no factory job, you don't get paid per piece. You don't get paid at all, but do it because you want to. The good work is its own reward. However, every so often, a breathtaking rebate rolls your way ...

I write this not to crow or brag, but perhaps to inspire somebody else. Mighty forces are too heavy to carry on our own.

A thought exercise I came up with is a booklet of practical knowledge, to hand down to the young ones, so they could benefit from what we learn in the twisty, turny passages of life. I figure, why should every generation have to start from scratch? (As if they'd read it! I'd have torn out the pages to roll cigarettes.) My booklet would be short as possible, and it would include a quote from the Beatles.

It's one of the last harmonies they sang, at the end of their magically mysterious adventure that ended on Abbey Road. The screaming and controversy of Beatlemania had blown past, leaving only a soft, wobbly piano in the background tink-tink-tinkling a Chopsticks-like beat, and McCartney and Lennon (I like to imagine it's both, or maybe all of the boys this time) sing a line like you'd rehearse for your deathbed,

In the end, the love you take is equal to the love you make.

POSTSCRIPT: Another Beatles line is All things must pass, and so, my friends I introduced to you here are moving on. They recognized a good opportunity, and pounced on it in typical Karen carpe diem style! They'll no longer be neighbors, but they'll always be friends. This column is a parting gift to them.

July 06

MS vs. MS

Our hosts here at Microsoft make it easy to work against MS just by being on the Internet. Through Microsoft's i'm Initiative, you contribute to the National MS Society simply by sending your normal e-mails or instant messages.

All you have to do is go to im.live.com -- and sign up for a free Hotmail e-mail account, or Windows Messenger instant messaging software. Then on your behalf, Microsoft will contribute to the MS Society with every single e-mail or instant message you send. Painless and positive and pretty nice.

You can also designate other charities like the Red Cross, Boys & Girls Clubs of America, UNICEF, Sierra Club, the Humane Society and others.

Another great way to contribute is to play the free games at Microsoft's club.live.com

You can donate the points you rack up to the MS Society, or any of the other charities there.

Disaboom readers: Thanks for your comments! I'll get back to you as soon as I figure out the software: I can tell something's there, but no actual wordsies appear. Huh???

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Updated 8/20/2008
Updated 7/8/2006