Cleveland 2012, #6

Final thoughts…

Kim and I give every potential overnight trip careful consideration. If it appeals to us, then we have to plan like crazy to avoid as many pitfalls as we reasonably can. I have checklists.

But our Cleveland vacation went off with very few problems. The hotel was about as good as it gets in terms of accessibility. Our new wheelchair van was awesome. We were able to work around most obstacles. For example, I never once had an urgent need to sit on the toilet at Jeanette and Steve’s house, where I had no access to a bathroom.

I’d like to stay on that subject for a moment, if you will indulge me. I’ve accomplished many things in my life. I was the seventh and eighth grade chess champion – as a seventh grader! I was valedictorian of my high school class in rural Maine. At graduation I was also given special commendations for having a full set of teeth and for being able to skin a deer in less than 10 minutes. I was president of my fraternity at the University of Maine because I was pretty much the only guy who wasn’t a complete drunk, a total stoner, or a hardened criminal. I was only varying degrees of each. But the accomplishment I am most proud of today is my exceptional bowel control. Don’t laugh! I am the master of that domain. In fact, I’ve left instructions that my gravestone will read “Here Lies Mitchell Sturgeon, He Was a Regular Guy” (if italics are allowed on gravestones).

If not for this skill, I would be at great risk whenever I leave my house, because bathroom accessibility is so hit and miss.

“Come on Mitch, get serious for a moment,” you, the reader, might be saying. “Tell us how you really felt showing up in Cleveland, being so significantly disabled. Share your pain and anguish with us. Tell us how your friends felt. Share their pain and anguish with us. Get to the really important stuff- the gut wrenching, the tears.”

Okay. Brace yourself. You asked for it.

Sorry, it just didn’t happen. I was not apprehensive about having my friends see me this way. The anticipation of spending time with them was so much more important. I rarely worry about what people think of my appearance, other than the size of my gut and whether my hair is combed. I don’t look at myself any differently than I ever have. I don’t feel conspicuous in my wheelchair. Perhaps I learned that from my mother. I live my life from the inside looking out.

I can’t be certain how my friends felt when they saw me. It never came up in conversation. I didn’t purposely avoid the subject. I was busy living in the moment, which is where I try to spend most of my time. I never gave it much thought until I sat down to write this blog post. You might consider that to be slightly selfish of me, and you might be right.

Everyone knew that I would arrive in a wheelchair, but I suppose seeing it with their own eyes for the first time might have been difficult. But I’d like to think that my friends in Cleveland were put at ease as soon as I began interacting with them in the same way that I always have. Each person processes these types of issues in their own way. I’m sure that some people spent time considering the worst-case scenarios. But I bet most of them were happy to see me happy, and didn’t go to any dark places. If they did, they hid it well.

I hope that for some periods of time during the week the fact that I am in such physical decline was overlooked and temporarily forgotten, and in the end I was regarded as just the same old, regular (no italics) Mitch – a true friend, an occasionally outspoken prick, but on balance a decent guy.

In closing (insert sarcastic applause here as for a speech that has lasted way too long), I’d like to thank everyone who went out of their way to make sure I was comfortable during the entire vacation. People were constantly asking me if I needed anything, and I often took them up on the offer. But most of all I must thank Kim. Almost all of our travel burdens fell directly on her. She not only met these challenges with incredible energy, but also with grace and a positive attitude. Thank you.

Oh, one more thing (insert eye roll here). If you haven’t noticed, I’m a realist. Therefore I must admit that there is a chance that this was my last trip to Cleveland. I didn’t raise the issue during my visit because I didn’t want to be melodramatic. But if that turns out to be the case, and I hope it doesn’t, then it will only be the end of my relationship with a place, not with the people in it. The coast of Maine is a wonderful location to visit in the summer if you live in Cleveland!

Postscript: (insert “you’ve got to be effing kidding me” here) Of course my high school classmates and college fraternity brothers know that my characterizations here were tongue-in-cheek. Although we studied in the woods of Maine, some of my old pals are now judges, doctors, lawyers, executives, fathers, mothers, and all around happy and successful people. Finally, I’ll address what I know is the burning question in everyone’s mind. Yes, I did successfully defend my title as chess champion in eighth grade. Afterward, I immediately retired from competitive chess. I went out on top.

Click for previous post:  Cleveland 2012, #5

Cleveland 2012, #5

Although we spent most of our time lounging around Jeanette and Steve’s house, we did venture out on a few excursions.

Watergate Apartments
26241 Lake Shore Blvd, Apt # 2152
Euclid, OH 44132

When we lived on the 21^st floor of this apartment building in 1986 it was almost exclusively occupied by white people. Now it is almost exclusively occupied by black people. It looks no better or worse except for normal wear and tear. Why did the tenant demographic change so dramatically? When did this happen? How did this happen? There might be enough material here for a sociologist’s doctoral thesis.

Hartstown Apartments
7155 Hart Street, Apt# E38
Mentor, OH 44060

After having lived in a skyscraper for our first year of marriage, we decided to come back to earth for our second year. But on our recent excursion down memory lane we found that this apartment complex had aged poorly. I don’t think we would have lived there in 1987 if it had looked like this. That’s the bad news. The good news is that our favorite bar, walking distance from these apartments, still looks as inviting as ever. It was called Gatsby’s back in the day. It had a typical indoor bar, but what really distinguished it from other establishments was its outdoor beach volleyball courts. You could enjoy pickup games of volleyball and have drinks delivered to the sideline. How can you beat that?

After we had driven by our old apartment complex and Gatsby’s, Kim pulled up to the intersection of Hart Street and Route 615, came to a complete stop, checked traffic in both directions, and turned left onto this busy road. In doing so, she drove straight through a red light. The traffic light had not been there 25 years ago; it was a stop sign only. This obscure and obsolete piece of information from 1987 was still imprinted in Kim’s brain to the extent that she ignored what her eyes told her in 2012. Crazy, right?

After we merged onto Route 615 (without getting a traffic ticket) we obeyed our GPS and tried to get back on I-90 to return to Jeanette and Steve’s house, but the ramp was closed for repairs. As we considered our options, long dormant maps in our heads started reformulating. We began to remember how to get to the next on-ramp, and the GPS confirmed it for us. We could never have conjured up these mental maps if not for the visual reminders we saw out of our van windows. Once the memories started coming back, they flowed. “I think the Great Lakes Mall is up ahead on the right.” This phenomenon, and the similar stop light phenomena from Route 615, would make for a solid doctoral thesis in neurobiology.

Dave and Dawn’s House
Mantua, OH

Back in January when we started to toss around the idea of getting together this summer, Dave and Dawn’s oldest daughter Jessica wrote the first of many secret emails to the rest of us indicating that she would like to have a surprise 25^th wedding anniversary party for her parents. She thought it would be wonderful if we could coordinate the party with our visit, and we did just that.

It took a lot of planning to pull off such an elaborate surprise party. On Saturday, all the kids mysteriously decided they wanted to go to a shopping mall near Dave and Dawn’s house. But what they actually did was set up for the party. The job of us old folks was to keep Dave and Dawn occupied in downtown Cleveland and then deliver them home as close to 3:30 in the afternoon is possible.

This was not a straightforward assignment. Each time we suggested to Dave and Dawn that we stop over at their house for visit later in the afternoon (none of us had been there all week) they begged off by saying that the house was not ready for company, and that the house was too far away, etc., etc. Finally, we concocted the idea of visiting a winery near them, after which we would just stop at their house to pick up the kids.

Resigned to this plan, Dave started pecking away on his smart phone to find out if his favorite musician was playing anywhere near Mantua that evening. Maybe we could all go see him. Dave was disappointed when this musician’s website indicated that he was playing a private party in the area, and therefore would not be at any local clubs. Private party indeed!

We delivered Dave and Dawn to their home at 4:00, and they were completely surprised. The kids had rented a huge tent and hired a certain musician- you can guess who. There was an abundance of catered food and drink, and many guests. Speeches were given. Toasts were made. Corn-filled bags were tossed at holes in plywood targets. Friendship, family, and love were celebrated. The party was an unmitigated success.



This was the last gathering that everyone attended. It was a fitting end to a brilliant vacation. Mark and Carrie and their two daughters flew back to Maine on Sunday. We lingered for one more day and then began the drive home early on Monday.

In my next post I’ll share my final thoughts about our Cleveland vacation.

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Cleveland 2012, #4

Cleveland is a big city, and there is a lot to do. However, we preferred to spend most of our time lounging around with our friends, doing nothing in particular other than eating, drinking, and just being together. And when we do this, the same thing happens every time- the stories start flying.

There’s the one about the trip we took to the Lake Erie Islands when Kim’s bra mysteriously ended up at the top of a flagpole.

There’s a whole collection of stories about Mark’s aptly named boat, “Bubble Butt.”

Then there’s the one about Louie’s wallet. Now that’s a classic.

We inevitably retell the story of Dave and Jim’s dual bachelor party where we rented a Greyhound bus and hit all the gentlemen’s clubs in Cleveland, and not just the classy ones. That always leads into the stories about Steve’s bachelor party and Jeanette’s bachelorette party.

And then we always talk about the tequila body shots that we did on one of our camping trips in the early 1990s. To this day we press Louie on whether he had relations with a girl named Tina that night, and to this day he denies it. Eventually, we expect that he will come clean.

This year I (half) joked that we needed to write all this stuff down and publish it.

Whenever we get together the ribbing is constant but goodhearted. The banter is witty but not callous. Mostly we tease people about the same old stories. When you do something memorable (usually stupid but occasionally heroic) in our group, you own that for the rest of your life. As the children have grown and matured, we’ve been able to share more of these tales with them. It’s fun to see the reaction from a 20-year-old when they learn that their stodgy old parents used to be wild and crazy.

And we go on and on deep into the night, laughing and reminiscing.

At Jeanette and Steve’s house, which was our vacation headquarters, I was made quite comfortable by everyone. I basically had five stations at my disposal:

1. Ground-level near the pool: Except in the early morning and late evening it was usually so hot that I needed a fan blowing right on my face.

Note, the remaining four locations were on the house’s main floor, which was five steps above ground level. I could only access these locations when I was in my iBot, which was most, but not all of the time.

2. Sitting at the kitchen center island: This was my favorite indoor perch. I would elevate in my iBot so that I was at barstool level like everyone else. If I sat there for an hour, I would see everyone at least once, and I was handy to all the food and drink. Central air-conditioning made it comfortable all day long.

3. Sitting in the living room: The only TV shows we watched were the Olympics on the big screen.

4. Screened-in porch: This was a nice location overlooking the pool, with a ceiling fan but no air-conditioning.

5. The laundry room: Jeanette and Steve’s first-floor bathroom was not accessible, but I could get into their laundry room. That space became my personal bathroom. I would use a portable urinal, and Kim would sneak across the hall to the bathroom and empty it for me.

If not for the iBot, this would have been a different sort of vacation. A ramp for the five steps into this house would’ve been a very long ramp indeed, not the kind you can throw together inexpensively.

Our long, lazy days revolved around food. There are several outstanding cooks in the group, and Dave brought his meat smoker. We cooked way too much food at dinner time, and picked away at the leftovers at will. We had food delivered one night to give the chefs a break.

The wine, beer, and margaritas flowed freely, sometimes even before noon. I wouldn’t consider anyone in our group to be a heavy drinker, but we all get in the mood when we’re together.

There were serious moments too, like when Keith talked about how he cheated death after rupturing his aorta, or Louie described his heart attack, or I spoke about my continued MS progression. We got the details of how Dawn was in a serious automobile accident a couple of years ago and was life-flighted to a hospital. I suppose any collection of people our age (either side of 50 years old) has endured their share of health challenges.

All of the kids changed so much over the five-year period since we last got together. It was kind of a caterpillar-butterfly thing. The adults didn’t change so much. It was kind of a butterfly-slowly-losing-its-brilliant-colors thing. The three oldest kids are now an occupational therapist, an architect, and an MBA candidate. Waiting in the wings we have future teachers, engineers, computer scientists, and more. James already has his pilot’s license. But more importantly, we have a wonderful group of quality young people. They are ambitious but also thoughtful, respectful, and fun-loving.

One thing we are quite proud of- there has not been a single divorce in our group, and I would be stunned if there ever is one.

The time we spent doing nothing in particular with our dear friends felt so relaxed and welcoming. But we did venture out on excursions a couple of times, and I’ll tell you about those in my next post.

Click for next post:       Cleveland 2012, #5
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Cleveland 2012, #3

There are many issues to consider for wheelchair travelers when they spend time away from home. Other than the traveling itself, the big three are: bathrooms, beds, and stairs.

Because of my iBot, I can eliminate most stair issues, and that’s huge. This leaves bathrooms and beds, the subject of this post.

A quick aside…this is my challenge as a disability blogger. I want to convey to my readers, healthy and disabled alike, how even the simplest things must be reinvented when a wheelchair user goes on the road. But how do I tell this story in an interesting way, so you don’t get bored out of your minds? Here goes…

Since none of my friends in the Cleveland area has a wheelchair accessible home, Kim and I doled out the cash for a hotel room for five nights, near Jeanette and Steve’s house. Amy, Nick, and Zach didn’t need a hotel room, so they stayed at Jeanette and Steve’s. Their house became the de facto vacation headquarters for our extended group. It’s not that everyone stayed there; it’s just this is where we tended to gather for meals and general merriment. Their house is large, centrally located, and has an in-ground pool.

Normally, finding a suitable hotel room is a crapshoot. No matter how clearly the website describes accessibility, no matter what they tell you on the phone, you just never know what you’re really going to get. But I had a secret weapon. Steve (of Jeanette and Steve) and his daughter Lexi scoped out half a dozen hotels for me using criteria that I had given them. They picked a winner.

Stick with me, we’re getting to the good stuff…

Despite this near-perfect set up, it still took a lot of thinking and some trial and error for us to figure out how I could actually use the toilet, sink, and shower, and how I could get into and out of bed. Imagine two parents on Christmas Eve who need to assemble all the children’s toys without any directions. That’s what it’s like for us when we set up a hotel room.

It’s little analogies like this one that keep people coming back for more, right?

We have two pieces of equipment that we attach to any bed that I sleep in. Photos of my home setup are scattered throughout this post. The first piece is installed at the foot of the bed on my side. Its purpose is to keep the blankets off my feet. The weight of the covers is sufficient to keep me from moving my feet around during the night, and that’s not good. The second piece of equipment is installed on my side of the bed, about a foot down from the top of the mattress. I use this portable railing to help me transfer into and out of the bed, and to help me roll from sleeping on my back to sleeping on my side during the middle of the night. So, as soon as we got into the hotel room Kim had to rip the blankets off the bed and install my special equipment. I know that lots of other couples will also rip the blankets off the bed as soon as they get into a hotel room, but this wasn’t that.

It never hurts to throw in some sexual innuendo…

As we set up the bed it became obvious that there was a problem. The only side of the bed that I had access to was the opposite side that I usually sleep on. There is a well-choreographed dance that I perform, a precise sequence of bodily manipulations, which gets me from my wheelchair onto the side of the bed in a sitting position. Kim then lifts my feet up on the bed and I lie back. I had to completely transpose this sequence from my right side to my left side and vice versa. Each part of my body was performing a task that the other part usually did. This would be somewhat challenging for any healthy person, because people are predominantly right-handed or left-handed. But with me these differences are exaggerated because, due to MS, my left side is so much weaker than my right side. The first couple of times I tried to get into and out of bed, it didn’t go well.

After about five attempts, however, I finally figured out a way to transfer from my wheelchair to the bed and back, using this reverse configuration. We decided that we wouldn’t need to switch rooms or sleep with our head where our feet normally go. It’s hard to see the TV that way, after all.

I’m going to switch from the bedroom to the bathroom now, but I promise not to gross you out with any references to, well, bathroom stuff…

In my bathroom at home I have grab bars situated at certain locations around the toilet and the roll-in shower. The hotel bathroom had lots of grab bars as well, but in slightly different arrangements. Again, things didn’t go well the first few tries, but by the end of the week my transfers were going smoothly. That’s how it usually works.

Wheelchair travel like this requires patience, a smidgen of ingenuity, more patience, a dash of creativity, and then a little more patience. I won’t claim that I never get frustrated and let out a string of expletives when I can’t perform the simplest functions, but I will say that I always take a breather, collect myself, and think about a better way to accomplish the task, and then try again.

Thanks for sticking with me. I hope I didn’t put you to sleep. As a reward for your loyalty I’d like to contribute a little something to your checking account. Just send me your account number and any passwords or pins, and I’ll take care of that posthast.

And very soon I’ll get to some of the fun stuff that we did during our vacation.

Click for next post:       Cleveland 2012, #4
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Cleveland 2012, #2

All of the offspring from our group of Cleveland friends are like cousins to one another. So Zach and Amy, even at 20 and 23 years of age, didn’t hesitate to join us on our trip to Cleveland this summer. In fact, Amy was excited to bring Nick, her longtime boyfriend and our likely future son-in-law, with her to Cleveland for the first time. Here’s a picture of Amy and Nick at a party in Ohio.

It has taken me a while to warm up to Nick. He escorted Amy to an 8^th grade dance back in the day, and I considered him to be a bit of a hoodlum at the time. After that dance, Amy and Nick didn’t see much of each other until Amy was in college. They began dating during Christmas break of her freshman year. He treats her wonderfully, and I’ve come to know him as a genuinely good guy.

I’m a bit of a higher education snob. I will admit I was initially displeased that the love of Amy’s life didn’t go to college. But I’m beginning to think Nick may be on to something. He is an electrician, has a good job, and carries no student loan debt. I don’t know how many of my friends have kids with fancy $200,000 degrees from top-notch universities, who are now back living with their parents, painting houses or making burritos for chump change in this depressed job market.

Now that we had committed to a summer vacation in Cleveland, we needed to figure out how to get all five of us from here to there and back again. It was too expensive to fly everyone, so we started planning a road trip. It turned out that I had enough frequent flyer miles remaining from my working days that I could fly one person to Cleveland. Zach was the obvious choice. Lucky him.

Zach is a second degree black belt, pictured here.

Marriage is teamwork. As such, we all bring different strengths and weaknesses to the table. I brought an ability to shoot a semi-automatic rifle, the skills to make a living by transforming trees into paper, and a passion for tracking every aspect of our lives on Excel spreadsheets. Kim brought uncanny shopping acumen, an extraordinary grasp of adolescent minds that manifested itself in a career as a middle school guidance counselor, and the ability to pack an unimaginable number of items into a very small space.

That last skill came in useful when we were trying to fit everything into our new van for the road trip: two wheelchairs, four people, and all of our luggage. This had to be accomplished in such a way that I could easily get in and out of the van, in my wheelchair, at our various pit stops. I couldn’t see how it would possibly work, but Kim made it look easy.

We picked up Amy and Nick at their nearby apartment and set out on the road for Cleveland at 5:30 AM on a Wednesday. I’ve come to learn over the years that the secret to a successful road trip is bladder synchronization. I commend the group for their exceptional effort in this regard. Because we didn’t have to make any stops that the whole group couldn’t “take advantage of,” we reached our destination at about 5:30 PM.

I manage fairly well on long road trips. My Invacare wheelchair reclines and allows me to elevate my feet. I make enough position adjustments throughout the ride that I don’t get stiff and sore. I brought the iBot, too, but it’s not as well suited for long hours of occupation in a vehicle. I don’t go on road trips without my Kindle, but I probably only read for 2 hours on this drive. I tried to keep Kim company instead. Interstate I-90 across the entire state of New York is one long, boring stretch of highway. Although Amy and Nick offered to take a shift at the wheel, Kim was not enamored of sitting in the back seat, so she drove straight through.

Here I was, 750 miles from the sanctuary that is my accessible home. I felt slightly exposed and vulnerable, but at the same time alive, engaged, and ready for a good time.

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Cleveland 2012, #1

Cleveland Skyline (Photo credit: digipixguy)

Kim and I just returned from a five night vacation near Cleveland, Ohio. Cleveland? Ya, that’s right.

In order to explain, let me take you back to 1986. That was the year I graduated from college. Most chemical engineers at the University of Maine were being groomed for positions in the pulp and paper industry. I didn't want to work in no stinkin’ mill, so I decided to take a high tech job with a company called Bailey Controls in Wickliffe, Ohio.

I started my new job in May of 1986, but flew home in July to marry Kim. After tearful goodbyes with both of our families and all of our friends, we began our marriage in a 21st story apartment in Euclid, Ohio, on the shore of Lake Erie. Before the interview process began we didn't know a single person in Ohio, and neither of us had ever visited the Buckeye State.

That move was daring for a couple of rednecks from Lincoln, Maine, where the tallest building was three stories high, and everyone was one shade or another of white. But we were adventurous and wanted to escape Maine for a while. It turned out to be an excellent decision. I recommend that all young couples consider separating themselves from friends and family when beginning a life together. In this way you have no choice but to rely upon and trust one another. That experience forms the foundation for a strong and lasting relationship (or allows an ill-advised relationship to crumble more quickly, I suppose).

It was our good fortune that in the years around 1986 Bailey Controls hired dozens of young engineers and technicians. The social atmosphere, therefore, was as exhilarating as college, but even better because we had some disposable income. Kim and I became devoted friends with a core group of 11 people, five couples plus Louie. Our extended group varied between 8 and 20 people on any given party night, which generally consisted of Thursday through Sunday. We also enjoyed intramural football, bowling leagues, ski trips, and pickup softball games.

Although we stayed only two years in Cleveland before returning East (I was to spend the next 12 years working in stinkin’ paper mills), we have remained close friends with our core group, having met up on 12 occasions in the last 25 years – sometimes in Cleveland, sometimes in Maine, and sometimes in between. Mark and Carrie actually ended up settling in Maine in the early 1990’s and have lived here ever since.

Due to our collective penchant for procreation, our core group of 11 swelled to 22 over the years. That made for some logistically challenging reunions, but we always managed. Now, as the children leave their nests, I expect our gatherings will become a little smaller once again.

This year it was time for the gang to meet up in Cleveland. Back in January when people started discussing this possibility, I was not at all confident that a road trip to Cleveland made sense for me. We already had one big vacation planned for 2012, our trip to the Bahamas, and I just wasn't sure I would be up for another one. Eventually, though, in May we committed to the trip and everyone finalized their plans for late July.

It took lots of planning, teamwork, and a heroic effort by Kim, but we pulled off the vacation and had a great time. It's fascinating how we can go years without seeing one another, yet it only takes only seconds to feel wholly at ease with our dear friends. I hope all of you are lucky enough to have such strong relationships with your distant friends.

In the next few posts I'll share some stories from our vacation.


Click for next post:  Cleveland 2012, #2

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.