Tuesday, August 27, 2013

Wheelchair Kamikaze – an Unexpected Visit

Marc and I became acquainted when we were hot on the trail of an emerging stem cell treatment in Israel. The total cost was something like $25,000, and, feeling a little desperate, each of us considered how we might fund such a venture. But fortunately, before we threw a bunch of money at an unproven idea, our treatment interests were diverted elsewhere.

If you’re not familiar with Marc, he authors the blog called Wheelchair Kamikaze. His website combines outstanding writing, photography, video production, and research analysis to create what I’m pretty sure is the most widely read MS blog in the world. He was gracious enough to give me some much-needed advice when I started my own blog.

As Marc and I became friends we spent a lot of time emailing and Skyping about treatment options, our mutually beloved Red Sox, or anything else that popped into our heads. We agree on most subjects, but not all. For example, we both embrace the concept of a multiverse- the idea that there is not a single universe but that there are many. Marc likes the theory that slightly different versions of Mitch, or anyone for that matter, live in each of the different universes. I tend to believe that there is only one Mitch, and no alternative Mitch’s are running around (or wheeling around) in the other universes. With such disparate views on the essential nature of our being, it’s a wonder that we can remain civil toward one another.

Kim and I have visited with Marc and his wife Karen several times when we’ve been in the New York City area. There’s nothing quite like a tour of Central Park from a native New Yorker. But Marc isn’t much for traveling outside of the range of his power wheelchair. So I was surprised and pleased when I received an email from him a couple of weeks ago letting me know that he would be passing through Portland on a road trip and would like to stop in for a visit. You can read his entire travel report here.

We chose a nice seafood restaurant for dinner, right on the water. It’s about a 20 minute walk from our house along a paved trail with scenic views of the ocean and the Portland skyline. A homeless friend of ours, Carrie, was staying at our house for a couple of nights, so the reservation was for five.

Throughout the walk to dinner Marc and I tended to end up side-by-side in our wheelchairs, so that we could chat. We compared notes on MS treatments, discussed the best way to grip a joystick on a wheelchair to minimize hand fatigue, and acknowledged how fortunate we have been in the marriage department. By taking up so much space, we often blocked the path for the walkers, joggers and bike riders who we shared it with. Sometimes we got out of the way, and other times we were too deep in conversation to notice. The only remarks we heard from other people were their unnecessary apologies. Wheelchair users can get away with anything.

It was nighttime when we exited the restaurant after a wonderful dinner. Much of the pathway home was unlit, but Kim had brought a flashlight. We soon learned that a single light for five people was about four lights too few. In fact, at one point a bike rider startled our homeless friend, Carrie, almost hitting her. She issued a spontaneous scream, and when no collision ensued and nobody was hurt, we all laughed about it.

Here’s an iPhone shot of one of the views along the walk.

After we returned home from dinner Karen and Marc were able to hang out for a while at our house and pose for these pictures before continuing on their way. This was a memorable visit from two wonderful people. I’ve made so many friends over the Internet in the past few years, but it’s particularly gratifying when I’m able to spend time with them in person.

I suppose I should clarify one item. Our “homeless” friend, Carrie, and her husband Mark have been two of our closest friends for over 25 years. Carrie was only homeless for two days because she had closed on the sale of their house in Maine, and she was waiting for her flight to join Mark at their new place in the San Francisco area. We miss them already, but wish them all the luck in the world on their new adventure.

(Darren, I expect to hear from you re: multiverse.)

Wednesday, August 21, 2013

A Long-Overdue Thank You

A Wild River Reflection For You jjjohn… Thank ...
(Photo credit: Denis Collette...!!!)
I’ve thanked a lot of people in my blog posts: Kim, various friends and relatives, random people who helped me at the grocery store, etc. But I’ve been remiss in expressing my gratitude to the very group of people with whom I share my innermost thoughts each week.

To the readers of this blog… THANK YOU!!!!!!!!

I don’t write so that I can admire my own words. I only write because I see that people are reading, and because they keep coming back. I have my moments of insecurity and doubt, and these occur at what I would consider a fairly normal frequency. I can run the gamut from questioning my writing skills all the way to wondering if this whole thing is really a well-intentioned and meticulously executed conspiracy among my friends and loved ones just to make me feel better (think The Truman Show). But whenever doubt creeps in, all I have to do is reflect upon the sincerity of the comments and correspondence I receive. I can also step back and appreciate the number of visitors that I have each day, from all over the world. I am soon reassured that this blog is legitimate, and that I’m not making a fool of myself.

Having said this, if there are any conspirators out there who want to come clean, now would be a good time!

I particularly enjoy reading and responding to the comments at the bottom of each blog post, and receiving emails (there is a “click here to email me” button on the top right of my blog page). In fact, I encourage more of you to leave your honest feedback in whichever way you are most comfortable. But if you simply enjoy reading but not responding, I understand. I am often that way with the blogs that I follow.

So once again, here is a big THANK YOU to the group of people who motivates me to dictate my musings onto the interwebs every week. Authoring this blog is a big part of why I lead such a contented life as a disabled person.


Reminder: Many folks tell me that they enjoy my blog but have trouble remembering to check it for new posts. I think half of them are lying (and that's okay). For the other half, you might consider the convenience of having each post delivered to your inbox. Simply type your email address into the box on the right hand side of the blog’s home page, just above the “Subscribe” button, and then click the Subscribe button. Almost immediately you will receive a computer-generated email that you need to respond to in order to confirm your subscription. Then just sit back and have the material delivered to you each week. You can always unsubscribe or automatically forward my emails to your junk folder at any time.

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Wednesday, August 14, 2013

Going Home – A Disabled Travel Story (part two of two)

“Home is where the heart is.” Pliny the Elder

The-Decorated-Bean-Pot-630x472We turned off Route 2 in our wheelchair van and started down the short grass and dirt road that would take us to Ludden’s Field. We were well aware that modified vans such as ours have low ground clearance, but the road appeared to be in good shape. Then we saw the railroad tracks. The tracks did not have a proper crossing because this was not a real road. The community event that we were attending is so popular that we were actually in bumper-to-bumper traffic (yes, on a dirt road). As such, there was no easy way to change our minds and turn around. We should have tried harder.

Being the take-charge guy that I am, after surveying the situation I told Kim, “You need to stay to the right to get over these railroad tracks.” She did. Sure enough, we heard that dreadful scraping sound from the underside of our van. Considering how much we had to pay for this van, that sound just sends chills up our spines. There we sat, straddling active railroad tracks (probably not a great idea), with a line of vehicles impatiently waiting behind us.

Luckily, a kind gentleman walked up and relieved me of my leadership authority by barking out new orders. He had Kim back the van up, which of course was accompanied by more horrendous scraping sounds, and the requisite spine chills. Then he instructed Kim to stay to the left instead of the right. She did, and we proceeded over the railroad tracks without further problems. A quick inspection of the vehicle revealed no obvious damage.

We were attending the 66th annual River Driver’s Supper, the premier event of Lincoln’s Homecoming Week festivities. It’s always held in Ludden’s Field, along the banks of the Penobscot River. I think that the process for putting on this dinner has remained almost unchanged for decades. I suspect that when the planning committee gets together, some number of months ahead of the event, they dust off old, handwritten notebooks, see who they have for volunteers this year, and start assigning names to tasks (and yes, there are men’s tasks and women’s tasks). As near as I can tell, nothing about the supper changes, ever. This isn’t typically how I operate, preferring instead to manage for continuous improvement. But I must admit that it is comforting to preserve tradition in certain facets of our lives, like they do here.

lpVzO1a The staple food at this supper is bean hole beans, along with fixings such as biscuits, coleslaw, desserts, and punch. As much as we were looking forward to an old-fashioned meal, we were more interested in chance meetings with people who we hadn’t seen in years. We met up with my uncle Richard and Laura. We bumped into folks that I used to work with at the paper mill, such as Carl and Ann. We saw high school classmates of ours including Jeff and Debby, and so many more people. For some folks, this may have been the first time they had seen me in a wheelchair, and I’m glad it was my super-cool iBot. It makes me look less unfortunate.

As we were leaving the supper Kim had an idea. Instead of loading me into the minivan, I would put the iBot in four-wheel-drive and head over the railroad tracks myself, waiting for Kim on the other side. No problem. Again, there was a steady stream of traffic in both directions. This time she took the van on the better route, and without the extra 500+ pounds that my iBot and I contribute, the ground clearance was much improved. She cruised over the tracks without incident.

99% of my human interactions on this three-day trip were positive in nature. Of course, I’m going to tell you about the other 1%. As Kim pulled away from the railroad tracks and toward where I was waiting for her, she stopped to load me into the van. There was no room for her to pull off the road to accomplish this task. Some asshole saw Kim stopping and informed me, “You know there is a line of cars waiting just for you.”

download That comment set off a rarely used switch in my brain. I looked at him with shoulders shrugged, palms skyward, and eyes wide open, shouting, “What the hell am I supposed to do?” I think he was taken aback by such an assertive response from a disabled person. He just kept on walking. It took me all of about 20 seconds to get loaded into the van, and nobody behind us seemed to mind. Afterward, I regretted having been so polite to this thoughtless man. The things I could have said…

Kim and I thoroughly enjoyed our hometown vacation. We were born in Lincoln and lived there until we left for college. After stops in Ohio and Vermont, we settled in Lincoln again from our mid-20s to our late 30s. Since moving to southern Maine 13 years ago, we had visited Lincoln several times a year. My mother died five years ago, and my dad passed away two years ago. This was our first trip back since shortly after his death, and I have no idea when we’ll return. We love our new city, and have no regrets about moving, but Lincoln will always be where we are from.

I hope that this little town will continue to welcome us home whenever we visit again.


Click here for part one.

Tuesday, August 6, 2013

Going Home – A Disabled Travel Story (part one of two)

English: Moose, Superior National Forest, Minn...
(Photo credit: Wikipedia)
After hours of driving north we were met with a pleasant surprise. The speed limit on Maine’s Interstate 95 beyond Old Town had been raised to 75 mph. This, on a stretch of road where at night the number of moose can surpass the number of vehicles. Despite this change in human behavior, the moose remain as unhurried, immovable, and deadly as ever (yes, I’ve been to the funeral of a moose/car collision victim). But this was the relatively safe middle of the day, so we pushed our minivan to unprecedented speeds.

We hadn’t been back to our hometown of Lincoln since cleaning out my parents’ house after my dad passed away almost two years ago. Our friends Tim and Lynn, who also grew up near Lincoln but now live elsewhere, invited us to spend a couple of nights with them. They were renting a house for a week on a lake in Lincoln known to us as the Little Narrows. Thus ended our self-imposed exile from our hometown.

Many lakes in Maine have local names that differ from their proper ones. The pond we call the Little Narrows is due east from the one we call the Big Narrows. On Google or Yahoo, though, these ponds are simply referred to by the single name “Upper Coldstream Ponds.” That would be like naming your twin sons Darrell.

2013 07 150Kim and I deliberated for weeks before deciding to take the chance on a situation like this one with questionable accessibility. It was a calculated risk.

When we arrived at the lake house the work of getting me and my chairs up into the house began. As I have mentioned in previous trip reports, I like to have two wheelchairs with me, because the iBot battery charging system is a bit clumsy. Kim easily guided me and the iBot up the four or five steps and onto the wraparound deck. Routine stuff.

It was quite a while later before we found some rusty, metal ramps in a shed and decided to bring the Invacare chair into the house. I’m quite knowledgeable about the operation of this wheelchair, and I have managed several, complex, multimillion dollar engineering projects in my career, so naturally I took control of the operation. The key was to have one person manning the joystick, so that we could engage the wheelchair’s motor, and two people pushing on the chair from behind, because the wheels were likely to spin on the steep ramps.

2013 07 160I stood in balance mode at the edge of the stairs, lording over my three subordinates below. I barked out orders, but they were openly defied. Then I made mere suggestions, and these were summarily ignored. Eventually I resorted to pleas, and all I got was heartless ridicule. Naturally, chaos ensued. As the chair made its way up the steps the wheels suddenly got a grip on the ramps and the chair lurched forward and up onto the deck. My iBot wheelchair doesn’t move backwards in balance mode very quickly, but somehow I narrowly averting a head-on collision with the out of control Invacare chair. All of this was soon forgotten, however, and the operation was considered an unmitigated success. Backs were slapped. Hands were shaken. Songs were written.

It was scary watching $22,000 worth of Medicare-supplied equipment being handled so roughly, but I would be lying if I said this was the first time, or that it will be the last.

After we had made the lake house as accessible as we could, it was time to prepare the lobster that Kim and I had brought inland with us from Portland. Clams and mussels were added to the mix. Topping off the menu was a bucket of margaritas. The feast, and the company, was outstanding.

After the meal we sat out on the deck and took in the view of the lake. Soon we were treated to several lightning strikes in the northern sky. For me, there is nothing quite like watching an evening thunderstorm unfold. Living in the city as I now do, even during the most intense storms I am simply not afforded a backdrop large enough and dark enough to take in the awesome beauty of a storm.

2013 07 175As the last vestiges of sunlight withered away, the intensity of the lightning picked up. It was far enough away that we didn’t feel a raindrop and scarcely heard a clap of thunder. Most of it was the type that we call heat lightning, as opposed to chain lightning. Large segments of the sky would be brightly lit every 10 seconds or so, and then later it would happen every few seconds. Eventually we stopped measuring the lightning by how little time passed between strikes, and instead by how many sections of the sky were lit up simultaneously by different strikes. No fireworks grand finale was a match for this show. We sat in awe, knowing that we were experiencing something rare and extraordinary.

Our seats for the show could not have been better. The stage was a serenely calm, dark lake, ringed by a carpet of dense green forests laid over rugged hills. Above the ridgelines, set against the black sky, were just enough puffy clouds to reflect and intensify the lightning flashes, and create eerie, floating silhouettes.

As the storm inched closer to us, a different sort of air displaced the harsh, steamy stuff that had enveloped us all day. You could feel its soothing coolness and taste its electricity. All at once the trees in our immediate vicinity started bending and swaying, presenting the undersides of their leaves in a gesture of submission to the storm. The rain arrived in a roaring sheet, and we rushed into the house satisfied that we had squeezed every ounce out of the experience that we possibly could.

2013 07 180
The accessibility risk we had taken to travel to the lake house was rewarded that night, in spades. But there was more to come on this trip.

To be continued…click here for part two.


Note: The last two photos were taken by Kim during the storm using her iPhone 5. And yes, the last one was taken during the dark of night, mid-lightning strike.


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