Tuesday, April 30, 2013

The Last Time I Was Drunk

1990 116 16 CLeveland In my 20s and 30s I was a member in good standing of the work hard and play hard club. For example, I recall a certain BYOB dance at a Knights of Columbus Hall in northern Maine. Kim was in charge of organizing our alcohol supply that night. When I grabbed my first beer at the dance I conducted a quick count and found that there were only 17 Michelob Lights in our cooler. I was incredulous. “Hopefully someone else brought extra beer,” I mumbled.

Due to my MS, today I no longer have the urge to consume much alcohol. I’ve become a two-drink kind of guy. If I go beyond that I become even more tired and weak than usual, and that is no fun. I can’t remember the last time I really tied one on. Wait – yes I can.

Our good friends Marco and Jean, who were regular weekend drinking buddies of ours back in the day, came to visit us in Portland one Saturday night about six years ago. At that point I was a scooter user. I could still get around a little bit with forearm crutches, but preferred to use the scooter when I had to travel more than 50 feet or so.

We started the evening at a sports bar called Rivalries. April is the only time of the year when the Red Sox, Bruins, and Celtics each play regular-season games. As luck would have it they were all on TV that night. Because Rivalries has an abundance of screens, we watched all three games from our table, plus a Yankees game too.

It was a night when everyone felt nostalgic, and we wanted to drink until we got drunk – except Kim, who was the designated driver. Marco and I conceived an elaborate drinking game where we would consume alcohol whenever the Red Sox scored, the Bruins scored, or the team playing against the Yankees scored. We couldn’t think of a way to incorporate the Celtics game into our drinking without suffering alcohol poisoning. It turned out to be a good night for the Boston teams, a bad night for the Yankees, and a memorable night for all of us.

1992 225 Camping NY1992 230 Camping NY

We eventually tired of Rivalries, and Rivalries tired of us I’m sure. Our next stop was an Irish pub called Ri Ra, where the Red Sox were still being broadcast on one of their TVs. We continued our drinking game until we could drink no more. It had been a while since I had consumed so much alcohol, and things got away from me. We stepped out of Ri Ra and found ourselves out on the sidewalk of Commercial Street in Portland, Maine. This is the heart of the Old Port District where all the cool bars, fancy restaurants, and beautiful people can be found.

2007 478 I steered my scooter down the wide, brick sidewalk, slightly ahead of Kim and our friends. I dodged imaginary obstacles, carving a path like a drunken slalom skier. I soon came upon a solitary, stoic man standing in the middle of the sidewalk ahead of me. I was inspired to cheer him up by demonstrating just how merry I and my band of followers were.

I throttled the scooter up to maximum speed and locked in on this unsuspecting pedestrian. My plan was to run circles around him until he smiled, and then continue down the sidewalk, perhaps seeking out another forlorn soul to sprinkle with my magical happy dust. About halfway through my loop-the-loop around this man, however, the laws of physics asserted themselves.

According to Wikipedia, centrifugal force is “the apparent outward force that draws a rotating body away from the center of rotation.” Well, away I went. I spilled my 3-wheeled scooter on its side. Fortunately, my fall was broken by the hard brick sidewalk. And because I was inebriated, I felt no pain. Instead, I considered my predicament to be about the funniest thing I had ever experienced. I began laughing with such intensity that I was gasping for breath.

Mine was only one perspective on these events. The innocent, unsuspecting soul who I targeted had another perspective. What he saw was a drunk, handicapped man, who had tipped over his scooter onto the pavement and injured himself so severely that he was having difficulty breathing. Was he dying?

Luckily, my posse caught up quickly and assessed the situation for what it was. They attempted to put the pedestrian at ease, but he had not signed up for this. Although he soon came to understand what was happening, he didn’t exactly see the humor. He was too traumatized.

When a larger than average, disabled man like me falls down drunk, it’s not easy to raise him. But my team of three people plus the pedestrian, with scant cooperation from me, was eventually able to scoop me up and pour me back onto my scooter. I had only a few minor scratches and bumps to show for it. I should have been embarrassed beyond consolation, but I wasn’t (and oddly, I still am not).

Kim didn’t take me directly home, but at least she cut me off from drinking for the rest of the night. They worked some food into me, and I said some funny but not creepy things to a waitress. I never fell off my scooter again that night, or ever.

This story is almost too pathetic to tell, yet I do. I find that sharing a self-depreciating anecdote on occasion helps maintain my humility. But do I regret that this fiasco was never made into a viral YouTube video? Hell no! Luckily, six years ago most cell phones didn’t have video capability.

I think that night was the last time I was really drunk, or ever will be again. MS has made me a more responsible drinker. Yet, although I find intoxicated behavior to be boorish and immature, it feels like a loss to no longer have the option to be boorish and immature.

Thursday, April 25, 2013

The Importance of Being Aimless

It’s not as if I’m a prisoner all winter. Even in the cold months I manage to leave the house often, either in my minivan or by negotiating the neighborhood snowbanks in my wheelchair. But travel becomes purely utilitarian. It’s about getting from point A to point B in the least painful way.

Today, I set out with the intention of picking up a prescription at the pharmacy. My wheelchair was set in high gear so as to minimize time spent away from the house, and my mind was singularly focused on the task at hand. But only seconds before being engulfed by the sliding glass doors of the supermarket, I had an epiphany.

For the first time since, I don’t know, November, it was pleasant enough that I could stay outside simply for the sake of staying outside. I spontaneously morphed into summer mode, where it’s perfectly acceptable and generally advisable to take the scenic route. So I did just that, and it was cathartic. (I hope that my spontaneous metamorphosis did not frighten any bystanders.)

For the next six months or so, I shall endeavor to be aimless whenever possible.

Here are some pictures from today’s wandering:

One of several walking/biking paths near my house.
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My view of Maine’s largest city, Portland, as seen from South Portland, near my home. Note how the buds are just now emerging on the trees.
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And for the first time this year Kim drove her Vespa to work. I didn’t get a picture this morning, but here’s one from last year.

Tuesday, April 23, 2013

Book Recommendation – “The BS Of My MS” by Lauri Wolf

81nRZHZVObL._SL1500_ A couple of weeks ago I received an email from Lauri Wolf, whom I had never corresponded with before. She indicated that she had been reading my blog, and proceeded to quote me from a February post where I lamented the lack of attention given to PPMS in the literature.
"…there’s very little in print that gives more than a passing mention to my particular type of MS…Going forward, if you find any new and interesting books on MS, please let me know."
In her email, Lauri indicated that indeed she did know of a new and interesting book on MS, because she had just published one on April 1. In her book she chronicles her experiences with PPMS, the particular variety of MS that she and I share. I immediately went to Amazon and purchased the Kindle version. When I finished reading the book I wrote this review at Amazon.com:
“Lauri Wolf has written the MS book that I've been waiting to read.

Like me, she has primary progressive multiple sclerosis (PPMS), a particularly disabling form of the disease. Unlike the more common form of MS, relapsing remitting multiple sclerosis, PPMS has seen no medical advancements. Ms. Wolf spent her career as a pharmacist, but is no longer able to work in that capacity. I believe she has found her true calling as a writer.

‘The BS of My MS’ chronicles her life challenges since being diagnosed some 14 years ago. Not only has she battled a creeping paralysis that has rendered her a quadriplegic, but she has dealt with other medical conditions, parenting challenges, marital struggles, and depression. But through it all she has emerged an emotionally and intellectually stronger person. Her secret? It's all about attitude. For example:

‘Beyond intelligence and common sense, I think the most important survival trait is a good sense of humor. I don't take myself too seriously and can laugh at myself. I allow myself some leeway, a margin of error, and make sure it's okay to fumble. If I didn't, I would be certain to disappoint myself often.’

Her writing is straightforward, brutally honest, and unembellished. It's the style of writing that draws you into the narrative and ushers you through the pages as if by absorption rather than through the conscious act of reading. I recommend this book especially for those dealing with chronic diseases, but also for anyone interested in reading about the triumph of the human spirit. I've read a lot of MS books over the years, but this one is now at the top of my list.”
And I meant every word of it. To visit the book website click here. To order the book at Amazon click here.

Thanks, Lauri, for sharing your story with us. I know you’re already working on book number two, and I look forward to its release.

Wednesday, April 17, 2013

Boston Terror

images A few months ago we learned that one of the hottest Broadway shows, Book of Mormon, would be touring through Boston in April. Our friends, Randi and Al, who live in Boston, suggested that the four of us pick a night to go to dinner and the show at the wonderfully restored Boston Opera House. We bought four tickets for Tuesday, April 16. Kim and I also booked a room for Tuesday night at the Boston Common Hotel and Conference Center.

As you know, on Monday, April 15, at approximately 2:50 PM, two bombs exploded on Boylston Street near Copley Square, during the running of the Boston Marathon. Kim and I happened to be listening to the radio soon after and learned fairly quickly about this terrible news. We turned on the TV and became engrossed in the coverage.

Later Monday afternoon, I checked in with Randi. We shared our thoughts about the tragedy and the human condition in general. Eventually our conversation turned to the practical issues. Although the theater seemed a relatively safe distance from the explosions, the hotel was only two blocks away from the Marathon finish line. It seemed unlikely that we would be able to stay there Tuesday night, as planned.

The four of us had been looking forward to our visit to Boston. Spending time with our dear friends and attending a Broadway show was very appealing. As it became clear that this was some sort of a terrorist attack of unknown origin (at least at the time of this writing), it became almost imperative that we follow through with our plans. Here’s why.

First, businesses in this section of Boston were suffering significant financial strain because their operations had been interrupted or suspended by the terrorist attack. We felt an obligation to honor our commitments to the theater and the hotel, as long as they would have us. Toward that end, I called the hotel on Monday night to ask if we would be able to stay there as planned on Tuesday night. I half expected no one to answer the phone. But to my surprise they indicated that their business was open and that we would be welcomed. I reconfirmed on Tuesday morning before we set out for Boston, and got the same answer. I also called the theater on Tuesday morning, and they gave me the good news – the show must go on!

Another reason that we were more motivated than ever to continue with our plans has to do with the nature of terrorism. Let’s face it, it’s not like Boston was under continual attack by a known enemy. If North Korea was firing missiles at Boston, then we would have canceled our plans. But terrorism isn’t about occupying or besieging a city. It’s about committing an act that is brutal enough to incite widespread fear in the citizenry. Its objective is not to capture territory or seize control, but rather to send some sort of convoluted, bloody message. It seemed that if we shied away from our plans to visit Boston, we would be doing exactly what the terrorists, whoever they are, wanted us to do. They would have won. Carrying through with our plans was our little way of saying, “Fuck You,” to the terrorists.

Explosion_Boston_marathon9j_1366079075995_401494_ver1.0_320_240It’s important to note that we were not being particularly brave in this situation. Given the security presence after the explosions, there was probably no safer place on the planet than Boston, Massachusetts in the days following this attack.

So, on Tuesday morning, about 18 hours after the explosions, Kim and I loaded up the wheelchair van and headed south to Boston, a ride of less than two hours. The closer we got to our hotel, the more the city changed. At first we noticed only increased police presence. As we turned from Dartmouth Street east onto Stuart Street, however, we saw the satellite trucks, the cameras, and the security people. If we could have continued on Dartmouth Street we would’ve crossed St. James Avenue and then Boylston Street – Ground Zero. But of course we couldn’t continue on Dartmouth Street, because that part of the city was barricaded off. Serious men and women in police uniforms and fatigues watched over the city. The most impressive were the ones dressed completely in black carrying M16 or equivalent rifles. I don’t know who they were, but I felt safe having them around.

In the late afternoon, as we walked with Randi and Al from our hotel to a restaurant near the theater, we saw more and more satellite trucks and video crews. There was an unofficial pecking order. The major networks claimed rights to the prize locations for their backdrops. Every now and then we would cross a more obscure intersection and find a single camera operator and a lone reporter from some local station, either rehearsing their report or delivering their report live. It was a surreal walk, especially for Randi and Al, longtime residents of the city.

We had a nice dinner then walked the last couple of blocks to the show. There was a long line outside the theater, and we soon realized why. All bags were being searched in the lobby. As the backpack on my wheelchair was being politely rifled through, I asked the security people if this was standard procedure or something new since the terrorist attack. They indicated that this was a first time event for them.

Twenty-six hundred and seventy of us, give or take, sat down and enjoyed an elaborate, hilarious Broadway musical, forgetting for a while about the terror that had transpired so recently and so near. After the show we walked back to the hotel. The satellite trucks and news crews who had dominated the landscape on our walk over, prior to sunset, were still present. But now they illuminated the night with their brilliant production lights.

images (1)When we arrived home today, satisfied and exhausted from our trip, I watched a Boston city official being interviewed on the news. I’ll paraphrase him here. He said that Boston would have their “revenge”. I cringed. How could he say that? How could he know if we would ever find the murderer, and even if we did, how could we ever be satisfied with any amount of punishment? But then he continued, “Our revenge will be that this city will return to normal. We won’t let the terrorists change us.”

Although life will never be the same for those most closely affected by this senseless tragedy, in general I like this official’s sentiment. Boston may becoming a more careful city, but let’s not allow it to become a more fearful city.

Wednesday, April 10, 2013

What Do I Do All Day? I Blog

images Obviously.

Why do I do it? It feels right. For example:
  • I am productive, creative, and sometimes even influential when I blog.
  • I become engaged in life, as opposed to dispassionate about life.
  • I feel that I am sometimes helping people when I do it, and this makes me all warm inside.
  • Against my better judgment, and despite the knowledge that I should not base my happiness on the approval of others, I relish the positive feedback I receive.
  • I am networking and meeting people when I do it, and this satisfies my modest need for human contact, much of which had been lost when I stopped working.
  • Since I’m an introvert, and rarely initiate communications with others, this is a way for me to update friends and loved ones about what is going on in my life and/or in my head. This way, I need not take any drastic action like picking up the phone and calling someone. Oftentimes even Kim learns what I’m thinking through my posts.
  • I’m able to learn useful and interesting things from readers’ comments and emails.
  • I’ve become introspective through the process of collecting, organizing, and acknowledging my thoughts and feelings before I write them down, as opposed to running on emotional autopilot (which I am prone to do at times). I’m not certain, however, that this is always a good thing. Ignorance and denial have a certain appeal in the world of the chronically ill.

2009 152 My Process

I sit by the ocean and wait for inspiration to strike. No, not really…

I have a Microsoft Word file where I keep all of my future posts, half written posts, poorly written posts, and posts I may never post. I try to publish at least once per week. To meet this goal I begin formulating my post on the weekend or early in the week, whenever an idea emerges from the recesses of my brain, or maybe from something I read, heard, or watched.

I go to my Microsoft Word file, and I start writing, which for me is actually dictating using a program called Dragon Naturally Speaking. My first pass is sometimes just a collection of random ideas, or it may be a lengthy narrative. But either way, it’s utterly unreadable and suitable for my eyes only. Then, over a period of a few days I keep going back to the piece several times a day and make another pass at it, each time improving it a little more. If the piece is long, I try to cut it to below 1000 words, or under 800 words if I can. Interestingly, this paring process usually improves the quality of the piece at the same time it reduces the quantity of words. I try to take the perspective of the reader. Am I being clear and unambiguous? Will the reader give a damn about what I am writing? Can I be more succinct?

I usually post in the evening. Earlier in that same day I put the finishing touches on my writing. Sometime after dinner, when I think I have it ready for publishing I email it to Kim, who is likely sitting on the couch about 5 feet away, for review and proofreading. It’s funny, even though I may have read over a piece twenty times, Kim can find a glaring grammatical error that I missed in each of those passes. It’s a classic forest and trees situation.

Once Kim has helped me find any errors, awkward sentences, or outright lies, I make the final edits in Microsoft Word. I then add graphics and hyperlinks, and generally jump through a bunch of hoops to get the product from Microsoft Word to my blog page.

When I’m ready, I click the Publish button, and the post goes live.

I have a couple of programs that I use to monitor traffic at my website. Don’t worry; I can’t see your name, IP address, or what you are wearing when you visit my blog. But I can see where you are visiting me from, and how you got to my website (Google search, hyperlink from another website, Facebook, etc). I particularly enjoy the comments and the emails that I receive from you. Keep them coming. Don’t be shy.

Thanks for being a reader.

(726 words)

This is the sixth in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.

Here are my other posts in this series:

1. I Watch (mostly) Quality Television
2. I Digitize and Archive Family Photos and Videos
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
5. I Nap
7. I Read Other People's Blogs

Tuesday, April 9, 2013

Thought control of robotic arms using the BrainGate system...

Life with paralysis is going to be better in the not so distant future. Thanks Stu for sharing this story. Click below.

** Stu's Views & M.S. News **: Thought control of robotic arms using the BrainGat...:

Wednesday, April 3, 2013

What Do I Do All Day? I Nap

This is the fifth in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.

“Are you serious Mitch? You expect me to read a blog post about napping, and not fall asleep myself from boredom and disinterest?”

Challenge accepted! This will be THE MOST INTERESTING blog post you have ever read on the subject of napping.

Approximately 80% of people with MS suffer from disease-related fatigue. I’m one of them. In addition to the MS fatigue, as a person with limited mobility I have difficulty remaining comfortable throughout the night in bed. That’s another reason I am tired during the day.

Before MS I never, ever napped. But now I’ve gotten the hang of it. I can take naps between 15 and 30 minutes long once or twice a day while Kim is at work.

One tool that has made napping easier for me is my Invacare TDX SP wheelchair, which I use most of the time when I am inside the house. Here are some pictures of me assuming the napping position.

First, I have to silence my TV, laptop, iPad, and iPhone, and then I put a pillow behind my head.

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I recline to a comfortable position, even though I could recline even further if I wanted to. Note that the 90° angle between my legs and my back is maintained throughout the reclining operation. My occupational therapist who helped me obtain this wheelchair said that I couldn’t get the flat reclining feature because I had no particular back problems. Maybe next time I’ll go for that feature. But this is pretty darn comfortable as is. It’s like I get to spend all day, every day, in my own mobile La-Z-Boy.

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I lift my feet up a little bit, even though I could lift them further if I wanted to. I take one last look at the clock because I want to know when my nap started, and then I close my eyes.

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I lie there until a little alarm inexplicably goes off in my head, and my eyes suddenly open. I then check the clock to see how long I napped. I sit back up and choose one of the other What Do I Do All Day? activities, now slightly rejuvenated.

How’d I do? Are you still awake?

Here are my other posts in this series: 
1. I Watch (mostly) Quality Television
2. I Digitize and Archive Family Photos and Videos
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
6. I Blog
7. I Read Other People's Blogs