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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