Our New Haven

Two weeks ago I wrote about our shiny, new wheelchair van. This week I will write about something much simpler and less expensive, but something which will impact our lives similarly. Don't get me wrong. The wheelchair van is wonderful. But we already had one. This van is just newer and has a few more bells and whistles.

When we moved into our house last summer we were excited about the small porch facing the ocean. The gentle breeze coming off the water warms you in the spring and fall, and cools you on uncomfortable summer days. But small is the operative word, and wheelchairs don't deal with small very well. We enjoyed some time on the porch, but not nearly as much as we had hoped we would. We spoke of expanding it one day, and we recently did just that.

Before





After




The new deck is rather simple and unadorned, but it holds great promise for our emotional well-being. The deck is situated such that, as long as there is some sun in the sky there is a portion that is bathed in sunlight and a portion that is protected by shade. Depending on the ambient temperature, I usually have a clear preference for one portion or the other.

This is different than the decks at our previous houses, though. We had always lived in suburban-type neighborhoods, and our decks were private and afforded us some intimacy with our trees, lawn, and sometimes even woods.

This house, and therefore this deck, is in an urban neighborhood, right in the middle of everything. We're adjusting to the fact that people walking their dogs or neighbors mowing their (tiny) lawns can get a good look at us barbecuing, eating, and lounging. I'm almost used to it already.

Sometimes, whether you have an incurable chronic disease or just a bad day at work, it's the simple things like your own little haven that can provide the most comfort. 

All that the deck is lacking is your company. Stop by and join us for a beer, a sip of wine, or a tall, cool glass of lemonade. Bring a dog treat.

Don't Hate

average margins of victory in the past five presidential elections. (Photo credit: Wikipedia)

I have a lot of conservative friends, most of whom are honest, genuine people who only want to make the world a better place. I have many liberal friends that I would describe in exactly the same manner. In fact, I can blend in quite nicely with either crowd. I expect some of my liberal friends would be surprised to find out how conservative I am on some issues. Similarly, I expect many of my conservative friends would be flabbergasted to learn that I lean liberal quite often.

I don't think this assessment speaks to my political elasticity as much as it speaks to the political egocentrism of so many liberals and conservatives. A lot of the politically opinionated folks I know surround themselves with like-minded people, and articulate their doctrines as if nobody could possibly think differently than they do.

I must admit to a certain level of hypocrisy, though. Although I won't back down from a good debate once it is initiated, my innate tendency is to avoid conflict. For that reason, I allow my silence to be interpreted as agreement when I really shouldn’t. I'm working on this. But it is a balancing act between being absolutely truthful all the time (hard and dangerous work) and being comfortable and friendly (easy and safe work).

From my unique perspective as a centrist, I notice that both groups too often assume the worst about the other. Each group thinks the other is morally corrupt and downright dangerous, not just wrong about the issues. I'd like for people to start assuming that the other side is simply wrong about the issues, and only arrive at the “morally corrupt and downright dangerous” characterizations if the given individual deserves it.

I'm not saying everyone should be a moderate like me. I'm so open minded sometimes that I'm afraid my brains will fall out. But I am saying everyone needs to be respectful of others, and resist the urge to personally demonize those who see the world differently.

Advertising by political candidates and mainstream media coverage of politics only serve to further whip us into a frenzy of extremism. But that's a subject for another blog post.

I’ll make this plea here. No matter how much you may differ with the political philosophies of the party at the opposite end of your spectrum, please don't assume that their motives are insincere. Everyone I know wants to make the world a better place – a more just, fair, happy, and prosperous world for everyone. If we all accepted this notion then political discourse would become more civil, and real work could be accomplished.

Think about it.

Wheelchair Vans

As I've written here before, I'm a lucky guy for so many reasons, and here’s another. Last month we mustered the financial resources to purchase a brand-new, 2012 Dodge Grand Caravan wheelchair accessible van, which is pictured to the right.

I'm sure many disabled people would love to be in my shoes, but simply can't afford something so expensive. Nevertheless, part of me is indignant about the whole thing. For the same amount of money that we spent on this glorified soccer-mom-taxi, a healthy person could've purchased any of the vehicles below.

2013 Audi S5 Premium Plus Quattro
2012 BMW Z4 Convertible
2013 Infiniti G Coupe
2012 Jaguar XF Sedan
2012 Mercedes-Benz E-Class E350 Luxury

But noooooo, I had to buy a minivan, and an SE model at that (no backup camera or in-dash GPS)!

All kidding and self-pity aside, this van will have at least as much positive effect on my life as any Jaguar does for its owner. I’m extremely grateful that I have a new wheelchair accessible van, but I am saddened by how many disabled people are not so fortunate.

It's woefully ironic that, on top of everything else, people with MS face increased financial challenges. For many, our ability to work is diminished or eliminated, and so therefore is our income. And on the other side of the ledger, our living expenses soar due to medical bills and disability accommodations (such as home modifications, mobility aides, and adapted vehicles). Those very same items that the disease necessitates us to acquire are the ones that our strained financial resources so often cannot afford.

What, exactly, constitutes a wheelchair accessible van? What do you get for all that money? There are several configurations, but the most common one involves taking a standard minivan and modifying it in the following ways.

First, the company making the modifications, which is not the original equipment manufacturer (OEM), removes the floor and installs a new floor that is between 11 and 14 inches lower than the original one. This is required to increase the headroom inside the van. This increased headroom is distributed in such a way that the vehicle is both taller than standard and has less ground clearance than standard.

Second, they install an automatic ramp system, usually in the passenger side sliding door, so that with a push of a button the door will open and a ramp will slide out or unfold.

Third, they modify the rear suspension so that the van can "kneel,” which means it literally lowers itself closer to the pavement when the ramp is extended so as to decrease the ramp angle and the effort required to climb it.

All wheelchair accessible vans also include a standard, manually operated, chair tie-down safety system consisting of straps, ratchets, and hooks. This prevents a wheelchair from sliding all over the place during normal driving, or more importantly, during an accident. But the system is cumbersome, and so many people, including me, take shortcuts – hooking up only one or two of the four straps for short trips, etc. I know. I'm bad.

Other than a few more tweaks to make this all fit in with the OEM chassis, that’s it. That’s all you get for your money.

The above modifications approximately double the price of a minivan. This means that a new wheelchair accessible van, depending on trim level, typically costs between $48,000 and $60,000, instead of $24,000-$30,000. This is just for the standard configuration with no additional disability-related equipment.

Many wheelchair users, however, require further modifications such as a six-way power driver’s seat, which makes it easier to transfer from a wheelchair to the driving position. This modification costs between $2500 and $3000.

Some wheelchair users require hand driving adaptations, which cost at least $1000 for the most basic setup, and can be much more expensive for advanced driving systems such as joystick controls.

Many users get around the cumbersome tie-down system by installing an EZ-lock wheelchair docking system, or similar, which greatly simplifies the entire process. This may be installed in the driver’s position, so that the user can drive the vehicle while sitting in a wheelchair. It may also be installed in other positions in the van where the user may typically sit in their wheelchair. These docking systems cost about $1800.

What prompted Kim and me to make this substantial investment? In 2010 she purchased a new Mazda 3 sedan. She loved the car, but only put about 5000 miles a year on it. She drove it to school, which was a short commute, and when she ran errands without me, which wasn't all that often.

A couple of months ago we asked ourselves why we were still a two-car family when we only had one driver (you can read here about my 2011 decision to stop driving), and when we now live so close to everything. We felt that it would make more sense to sell the 2010 Mazda 3, which we were making payments on, and the 2004 wheelchair van, which was paid off by this time, and purchase a new, wheelchair accessible minivan that would serve as our family’s all-purpose vehicle for years to come.

My 2004 wheelchair van is now for sale. If you're in the market, you can read about it here.

To Kim's credit, it was mostly her idea to surrender the beloved Mazda 3. Her only stipulation was that she be able to purchase a scooter so that she could still have some fun driving a vehicle once in a while. Here's a picture of Kim on her Vespa.

On the Pursuit of Happiness

(Photo credit: Wikipedia)

 

I've read many Fourth of July blog posts this morning, and this is perhaps the best one, from Mano Singham.

On the pursuit of happiness

On this independence day holiday, I am repeating a post on what to me is one of the most intriguing phrases in the US Declaration of Independence. It is contained in the famous sentence:

We hold these truths to be self-evident, that all men are created equal, that they are endowed, by their Creator, with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness.

I have always found the inclusion of “the pursuit of happiness” as an inalienable right to be appealing. One does not expect to see such a quaint sentiment in a revolutionary political document, and its presence sheds an interesting and positive light on the minds and aspirations of the people who drafted it.

But while happiness is a laudable goal, the suggestion that we should actively pursue it may be misguided. Happiness is not something to be sought after. People who pursue happiness as a goal are unlikely to find it. Happiness is what happens when you are pursuing other worthwhile goals. The philosopher Robert Ingersoll also valued happiness but had a better sense about what it would take to achieve it, saying “Happiness is the only good. The place to be happy is here. The time to be happy is now. The way to be happy is to make others so.” [My italics]

Kurt Vonnegut in his last book A Man Without a Country (2005) suggests that the real problem is not that we are rarely happy but that we don’t realize when we are happy, and that we should get in the habit of noticing those moments and stop and savor them. He wrote:

I apologize to all of you who are the same age as my grandchildren. And many of you reading this are probably the same age as my grandchildren. They, like you, are being royally shafted and lied to by our Baby Boomer corporations and government.

Yes, this planet is in a terrible mess. But it has always been a mess. There have never been any “Good Old Days,” there have just been days. And as I say to my grandchildren, “Don’t look at me, I just got here.”

There are old poops who will say that you do not become a grown-up until you have somehow survived, as they have, some famous calamity — the Great Depression, the Second World War, Vietnam, whatever. Storytellers are responsible for this destructive, not to say suicidal, myth. Again and again in stories, after some terrible mess, the character is able to say at last, “Today I am a woman. Today I am a man. The end.”

When I got home from the Second World War, my Uncle Dan clapped me on the back, and he said, “You’re a man now.” So I killed him. Not really, but I certainly felt like doing it.

Dan, that was my bad uncle, who said a man can’t be a man unless he’d gone to war.

But I had a good uncle, my late Uncle Alex. He was my father’s kid brother, a childless graduate of Harvard who was an honest life-insurance salesman in Indianapolis. He was well-read and wise. And his principal complaint about other human beings was that they so seldom noticed it when they were happy. So when we were drinking lemonade under an apple tree in the summer, say, and talking lazily about this and that, almost buzzing like honeybees, Uncle Alex would suddenly interrupt the agreeable blather to exclaim, “If this isn’t nice, I don’t know what is.”

So I do the same now, and so do my kids and grandkids. And I urge you to please notice when you are happy, and exclaim or murmur or think at some point, “If this isn’t nice, I don’t know what is.”

This is really good advice that I try to follow because it does work. It makes you realize that you may be happier than you think you are.