You Can't Choose Your Relatives, but You Can Choose…

(Photo credit: Wikipedia)

“It is not bigotry to be certain we are right; but it is bigotry to be unable to imagine how we might possibly have gone wrong.”  - G. K. Chesterton

People are loyal, often to a fault. Year after year we stick with the same auto insurance company, the same favorite restaurant, and even the same brand of shampoo, no matter how much better the alternatives may be. I’ve used one bank for more than 20 years. Is there no better choice? I’m not sure. I’ve never considered the issue.  Whether it's a matter of comfort, loyalty, or laziness, we tend to mindlessly stick with what we know.

On the other hand, we have no control over other parts of our lives.  We can’t choose our relatives or our genetic makeup.  I’ve figured out that we men don’t actually chose which woman it is who knocks us over the head, drags us to her cave, and forces us to make babies and take out the trash for the rest of our lives either. But this post is about one area where we do have a choice, and where we should not settle for mediocrity.

Elaine recently wrote me at email@enjoyingtheride.com, regarding her husband who, like me, has primary progressive MS:

Dear Mitch, I am very sorry that the CCSVI treatment did not work for you.  We are desperate for the procedure to work, so I am hoping it does.  The one bad thing that has come out of our CCSVI experience is that my husband got the testing done and was scheduled for treatment, and then when we asked his local neurologist to support him after the procedure and monitor him the neurologist accused us of seeking "quackery", and said he would not support him after the procedure.  The MS center that he is part of has an extremely negative view of CCSVI.

When I read something like this, my blood boils.  It's one thing if a physician draws a line in the sand when a patient refuses proven treatments in favor of experimental ones. I may not agree with that, but I get it. What I don't get is this doctor. There are exactly zero FDA approved treatments for primary progressive multiple sclerosis. This doctor has nothing to offer his patient, yet he won't support the patient’s exploration of a promising new treatment. To me, that is unconscionable, and grounds for dismissal.

Yes, that's right. You can fire your doctor! He is supposed to work for you, with your best interests in mind. If he strays from that duty, then you are allowed to fire his ass (I use the masculine pronoun here, because it's usually the male doctors who are the most arrogant).

I’m not here to bash the entire profession, just the few doctors who have lost sight of their original calling.  I'm fortunate to have a neurologist who, although he is skeptical about the relationship between CCSVI and multiple sclerosis, accepts that he has nothing better to offer me.  He supports most of my wild ideas, and even suggests a few of his own.  This is how it is supposed to work.

So go ahead and keep writing checks to your underperforming insurance company and continue visiting the diner on the corner, but be choosy about your doctors. Don't hesitate to make a change if your relationship is not meeting expectations. It could be a matter of life or death.

Oh, I just received an update from Elaine. Her husband was treated for CCSVI last week, and is experiencing significant improvement. Hmmm. Imagine that.

Our Night Out on the Town

“If I only had a little humility, I'd be perfect.”
  - Ted Turner

I’m predisposed to enjoy solitary pursuits like reading a good book, sitting by the fire, or watching quality TV. But once in a while I get the urge to abandon my safe haven and venture into the disabled-unfriendly world beyond, usually at my wife’s prodding. Wednesday was one of those days.

Let me set this up first. Kim is as frugal as anyone I know, and she comes by it naturally. When her father visits, his conversational ice-breaker isn’t something like, “I’m thinking about getting one of the new BMW’s, but it has to come with leather seats.” It’s more likely to be, “Guess how much I paid for these sneakers?” And a good guess will be something south of $4.

One way that Kim scratches her penny-pinching itch is to compete in radio station giveaways, as opposed to actually purchasing concert tickets, for example. In recent years we’ve seen classic bands such as Styx, ZZ Top, and others, all with complementary tickets. This summer we even saw the still-lovely Cheryl Crow at Meadowbrook. In 1986, when we were newlyweds and living in far away and exotic Cleveland, Ohio, of all places, she won a $1,000 shopping spree at the store of our choice. At the time we possessed little more than student loans, the newfound thrill of living on our own, and a few wedding presents. We chose J.C. Penny. Some of the items we purchased included: two tennis racquets (the new aluminum kind), a softball glove that I used maybe 5 times, and a blue dress that Kim wore on and off for 20 years.

Last week, one of the local stations was giving away second row tickets to our favorite stand-up comic at our favorite historic theater. When prompted, we needed to be the ninth caller. For particularly appealing giveaways like this one, Kim will deputize me as her assistant caller. I had the land line, and she had her cell phone. We heard the cue and started dialing. I get nothing but busy signals call after call. Kim was both caller number two and caller number nine. How does she do that?

The evening of the show, I ascended into my iBot, like a king to his throne, and we set out for the city. The first challenge was parking. There are five handicapped parking spots very near the entrance to the theater. We were optimistic, but it was not to be. Five people, four and a half of whom were probably less disabled than me, beat us to the punch, fair and square.

The next cluster of handicapped parking spots was a couple of blocks away. We were able to claim the last one of those, but this required Kim to pull alongside a snow bank. When we opened the van door the slide-out ramp began to extend. It sliced through the middle of the snow bank like a hot knife through butter. The problem was that the ramp rested on top of the remainder of the snow bank, teetering as if it was a plank on a pirate ship. Luckily, despite having been an imperfect husband all these years, Kim didn't prod me out of the van with a sharp hook where her hand used to be. Instead, we retracted the ramp/plank, and Kim kicked away the bottom of the snow bank in her dressy boots. We re-extended the ramp, and I backed onto the sidewalk without incident. No splash, captain.

When we reached the theater lobby, I did what I love to do in crowds – I transitioned to balance mode in my iBot. Oh, the looks I get. Many people speak privately to one another, or so they think, as I go whizzing by. The most common remarks are uninformed expressions of amazement like "wow, look at that", or "cool!" I carry on as if moving about on two wheels in a crowded theater is as common as is walking down the street in three dollar sneakers.

I carry with me and occasionally hand out some semi-humorous, semi-serious business cards. I've been through a few iterations of them. Here is my latest one, front and back:



When Kim picked up the show tickets at the radio station a few days earlier, we were pleased that one of them was an aisle seat. Shortly after arriving at the theater, even though it was half an hour before the start of the show, we decided to scope out our seats to confirm that I would be able to transfer, and indeed I could. Next, we returned to the lobby to mingle and get some refreshments. I bought a warm, gooey, chocolate chip cookie. Kim secured a pinot noir, served up in a plastic cup.

It's not that I don't like sipping wine at the theater; it's just that I have to manage my bladder at events like this. Sure, there is a handicapped bathroom off the lobby, but if I've transferred to my theater seat, and Kim has already driven my chair to its out-of-the-way storage space, and then I have to use the bathroom, I would cause a scene in the second row of a comedy show (“hey buddy, you don’t have to laugh at my jokes, but do you really need to jump in your wheelchair and sneak off”), and I would miss about 20 minutes of the 90 minute show. So, no pinot for me.

As we were casually standing (and balancing) in the lobby, a very nice lady approached me. She asked if mine was the stair-climbing wheelchair, and I proudly responded that it was. Like so many people who introduce themselves to me, she revealed that someone close to her was also a wheelchair user – her husband. Because I am a member of the club myself, I’m allowed to ask, "If you don't mind, why is your husband in a wheelchair?"

"He has MS," she replied. Bingo! I love meeting other MSers or MS caregivers.

"Oh, so do I," I exclaimed, affirming our fateful kinship.

"He has a wheelchair too, but nothing like this one,” she continued. I felt a surge of self-satisfaction. "He's on a ventilator now, and is blind, so he doesn't get out much. He tried one of those sip and puff controllers on his newest chair, but because he has difficulty breathing into the tube or even seeing where he’s going, it didn't work out very well."

That wasn’t what I expected to hear at all. I had been trumped! In most interactions of this sort I'm the incredibly disabled person. I'm to be marveled at and admired for overcoming obstacles to make it to the theater, mingle with the healthy folks, and nibble casually on cookies. I’m the role model…the inspiration.

When somebody tells me that a loved one is in a wheelchair or has MS, I almost always hand them one of my business cards so that they can visit my blog and be impressed by my wit and charm, and my noble attitude toward life’s challenges. I couldn't, however, bring myself to give one of these cards to this wonderful lady. I didn't feel worthy. It seemed presumptuous of me. If I were to meet her husband, a man who has been places I haven’t, places I may or may not go myself someday, oh the stories he could tell. He would be the mentor, and I would be the apprentice.

This lady was remarkably composed when describing her husband's situation. Her voice didn't crack, and she maintained a matter of fact, yet kind, expression on her face. She's well practiced, like Kim. Taking her cue that it was socially acceptable to keep our happy faces on, I said, "Well, one of the best things about being in this iBot is that beautiful women like you, who wouldn't normally give me the time of day, come up and talk to me."

We all laughed and wished each other a Happy New Year. My business card stayed in my pocket. I regret that now. I should not have made the determination that my website was inappropriate for these brave people. It should have been their choice to make. But that opportunity has now passed.

As the lady walked away my wife turned to me and whispered, "I hate to hear stories like that." I knew exactly what she meant.

The iBot’s, and Mitch’s, 15 Seconds of Fame

I think it is supposed to be 15 minutes of fame, according to Andy Warhol, but you take what you can get, right?

A couple of months ago I was contacted by a producer for the History Channel show called Modern Marvels.  They were doing a piece on the Segway (a cousin of the iBot wheelchair that I own) and wanted to license some of my iBot footage. 

Of course I agreed.  Any publicity for the iBot is welcome.  I'm working with a group of people to try and save the iBot from extinction (click here).  I made my case with the producer that the iBot technology and the iBot story were much more compelling than the Segway technology or the Segway story.  I didn't get anywhere though. 

So the piece recently went live.  Click here to view it.  The Segway story (which is good, just not as good as the iBot story would have been), begins at time 11:35.  My brief appearance (if you look quickly you’ll see Kim too) begins around 14:20.  

So it was cool to be on the History Channel, but I want more.  I want the iBot technology and the iBot human interest story to be told on Nightline, or 60 Minutes, or made into a full length documentary.  The world needs to hear the story of how disabled people were given an incredible gift, only to have it unceremoniously ripped away from them. 

Who do I call?  How do we get this story told?

Merry Disabled Christmas 2010

Image via WikipediaThis year I endured disabled surgery

And read disabled books
I contributed to a disabled charity
And thwarted disabled crooks

I sailed on a disabled cruise
And piloted my disabled iBot
I sat for disabled interviews
And the good disabled fight, I fought

I starved myself on a disabled diet
And took a disabled shot at a deer
I appreciated nature, and disabled quiet
And quaffed many a disabled beer

I hand-peddled my disabled bike
And hand-drove my disabled van
I spent disabled time with people I like
And I was a loyal, disabled, sports fan

I spent too much money on disabled wheelchair parts
And I made many a disabled friend
I touched a few disabled hearts
And a thousand disabled emails, I did send

It’s not that life is unfair
As you know, I’m not one to complain
You play the cards that are dealt you
If you live in the jungle, you better enjoy the rain

So during this holiday season
I urge you to seek out contentment
Don’t spend time searching for a reason
To feel self-pity, jealousy, or resentment

I’ll end my cryptic verse right here
And offer this sentiment to those most dear
I wish you a Merry Disabled Christmas
And a Happy Disabled New Year!

I Was Interviewed About My CCSVI Experience

I was interviewed by a Canadian magazine about my experiences with MS and CCSVI. The overall story starts on page 16. My input is on pages 34 - 36.  Click here to read.

A New Way to "Enjoy the Ride"

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I Know This…I Believe That

I know that there should be a playoff system in College Football.
I believe that someday there will be one.

I know that I can become a better person.
I believe that I am on the right track.

I know I can lead a contented life, given my current circumstances.
I believe that this may not always hold true, however, as my disease progresses.

I know that I love my wife more than anything.
I believe that she understands this, even if I don’t say it often enough.

I know that modern democracy is superior to every other form of government so far conceived by mankind.
I believe that there must be a better way to govern, yet undiscovered- a government based on thoughtful, intelligent discourse rather than mind-numbing political rhetoric.

I know that one day we’ll cure MS.
I believe that it will be too late for me.

I know that I have many treasured friends.
I believe that I don’t foster these friendships as well as I should.

I know that the odds of winning the lottery are hopelessly slim.
I believe I still have a chance.

I know that questions of a moral nature are best resolved by choosing the path that maximizes human well-being.
I believe that eventually this concept will win the day.

I know that tomorrow the sun will rise in the east and set in the west.
I believe that each day has the potential to be an amazing one.

I know that, like everybody, one day I’ll die.
But first, I believe that I still have a bit of living left to do.

What do you know? What do you believe?

Why the iBot is Spending the Night in the Garage

I did a little wheelchair deer hunting today.  I got a stuck in the mud for a while, but the iBot came through for me.  Was Kim as impressed as I was?  Not really.

I've Been Faking the Whole Wheelchair Thing

For over two years I’ve been perpetrating a fraud by posing as a full-time wheelchair user. It’s a big, fat lie, and I need to come clean. Since July of 2008 I've been an iBot user, but only in the past couple of weeks have I actually become a wheelchair user, and then only part-time.

If you read my posts (here first, then here) about how I was almost scammed as I shopped for a power wheelchair recently, you know that I've been looking for a backup for my iBot. About two weeks ago my new Invacare Pronto M51 was delivered, and I've been using it frequently around the house in order to save wear and tear and battery life on my iBot. As you may know, the iBot won’t be around forever (click here for an explanation). Just yesterday, for the first time, I decided to venture outside of my house in the M51- a real wheelchair. Yikes.

I expect that when most people "come out" in public for the first time in a wheelchair, it is a traumatic experience. And I expect that the primary reason for said trauma is that many people regard wheelchair users with either apathy or pity. They literally and figuratively look down on us, no doubt comforting themselves with thoughts like, "I'm glad that's not me."

But I didn't go through that ordeal in July of 2008. I didn't go out in public in a wheelchair. I went in an iBot, and that's quite a different thing.

Whenever I operate my iBot in public, I try to do so in balance mode (depicted at left), for several reasons. First, it's practical. Communicating with people eye to eye makes sense. But mostly I operate in balance mode for non-practical reasons. When I’m zipping around on two wheels people don’t look at me with pity. In fact, in an implausible twist of fate, they sometimes look at me with envy. I realize they don’t want to be disabled, but they appreciate that they’re in the presence of a cutting edge device, and I’m the pilot. As my friend Max Burt pointed out to me, when you are in balance mode in an iBot it gives you personality. You are doing more than just getting around. You're getting around in style. This is not a frivolous consideration. Projecting a little personality is good for the soul.

But back to my other wheelchair…yesterday my son was scheduled for day surgery at a local hospital. My wife was working, so I volunteered to accompany Zach. The batteries on my iBot were running a little low, so I decided to venture out into the cold, cruel world in a mere wheelchair, rather than in my iBot. I was finally going to stop faking it. I was going to be a real wheelchair user for once.

So how did it go? I had mixed results. Since I was usually sitting in a waiting room or sitting by my son’s bed, there really wasn't a lot of opportunity to be in balance mode anyway. There were no surprise stairs to climb or curbs to navigate- no beaches either. I was just another cripple zipping around an accessible hospital in a wheelchair, not projecting my usual personality, and not attracting comments every five minutes.

The only functional shortcoming of my wheelchair was evident in the cafeteria. I was sitting too low to get a good look at the food being offering at the buffet, and so I ended up with a rather horrible cashew chicken dish. In order to wash away the taste, I decided to go back and get some dessert. I couldn't reach the handle on the soft serve ice cream dispenser, so I had to ask a gentleman to help me out. I didn’t particularly like asking for help, but, well, the ice cream washed away both bad tastes.

My first public wheelchair experience wasn't too bad, but I think I'll stick with my iBot in the future. I’m just not the same without it.

Political Advertising- Make it Stop!

(Photo credit: Coventry City Council)

I know this blog is supposed to be about leading a contented life as a disabled person. But there is something else I'd like to write about today, if you will indulge me.

Here in the United States we have a big election tomorrow. It's what we call a midterm election, so we're not voting for President, but we are voting for just about every other possible position in federal, state, and local government.

I'm not here to advocate for any particular candidate or political party, but rather to publicly protest about how absurd the process has become. I understand that it's better than the alternative – not being able to choose your own representative government. But we've been doing this for over 200 years now, and it is getting worse, not better. 

Specifically, I'm here to complain about political advertising on TV. As a disabled person who sits at home all day, I tend to watch a lot of television. I try to pick out the quality programming, but I must admit that sometimes the TV is on in the background for no reason in particular (like right now, for example).

In the last couple of months, my television viewing experience, and more importantly my enthusiasm for tomorrow’s election, has been raped and pillaged by incessant political advertising. It would be one thing if the commercials were informative, well done, or even creative. But they are not. They are absolutely mind-numbing.

In response to this deluge I conducted a scientific study of the candidates’ advertising. My extensive data analysis indicates that if a negative claim is made against an opponent, there is a 99% chance that said claim is at best distorted and at worst completely fabricated. The data further reveals that if a positive claim is made about a candidate, there is an 80% chance that said claim is at best distorted and at worst completely fabricated.

I have scientifically established, therefore, that negative advertising is less informative than positive advertising, and that positive advertising is far less informative than no advertising at all. Because of this, as I finalize my voting decisions today, I will award “bonus points” to the candidates who inundated me with the fewest commercials (but I’ll give more bonus points for lack of negative commercials, as they are the worst kind).

OK, maybe I didn't really conduct a study, but I bet my percentages are pretty damn close to the truth.

I can think of only one good reason why candidates spend so much money on television advertising. It must work. I would be ashamed of myself if I let the content of these commercials influence my vote in any way (other than my bonus point system). We should listen to debates, meet with the candidates, hash things out with our friends and neighbors, but we can’t let these fraudulent commercials sway us! Since many of us apparently are duped by this disinformation, then I must reluctantly conclude that we are a weak-minded society, prone to manipulation. Shame on us.

But it doesn’t have to be this way.
 
I'll make my informed voting decisions based on how I feel about the candidates’ ability to represent my family’s interests, with adjustments made for how I was treated as a consumer of their advertising.  The only way we can stop the insanity is to demonstrate to the next round of political candidates that mudslinging and tacky advertisements will not produce the desired outcome.  All television commercials of the current style, even the positive ones, are a waste of our time and an insult to our intelligence.  Make it stop!

Can I get an amen?