Jamaica 2013, #1: Hello Paradise

Vacations come at a relatively high price for disabled people. I’m not referring only to dollars and cents. We also must deal with the considerable effort and even risk involved in leaving our safe havens and modifying the routines that we have so carefully crafted to get through each day.

Despite the challenges, we decided to vacation again. My brother Andy and his wife Karen were not able to join us this year, as they did in the Bahamas last year, but my brother Tom and his wife Diane were on board once more.

When we landed in Jamaica (more about the flights in a later post) I was placed in an airport wheelchair, and an employee pushed me through customs to the baggage claim area. Fortunately, we found all of our luggage and both of my wheelchairs, undamaged. My greatest vacation worries were behind me- a snowstorm would derail our flights or my iBot wheelchair would end up in Albuquerque instead of Jamaica.

I only needed to transfer from the clunky, old airport wheelchair to my iBot, and we would be ready to roll. I planned to hoist myself up ever so briefly (all the while holding onto something with each hand) before doing a 180° pivot, which was fairly standard stuff for me. However, I felt a sharp pain in my left ankle when I put any weight on it. This sort of thing happens once in a while, and I have no explanation. I tried three times to stand up, but on each occasion I plopped back into the airport wheelchair. My strategy was to be patient, rest between tries, and just keep at it until I succeeded. The airport employee who had been assisting me had another plan.

She said, “Look, you are a good man. Now just stand up and move your butt into that chair. We’ll all grab on and help you. Ready, 1, 2, 3…”

I guess I just needed that pep talk (plus the assistance), because I stood up and, with six or seven helping hands grabbing me from my waste to my elbows, I finally completed the transfer. If that maneuver had somehow failed, I would’ve considered what she said to have been rude, pushy, and insensitive. But because she was proven correct, it felt more like tough, Jamaican love. Ya Mon.

It was empowering to find myself in the iBot, once again in control of my personal mobility after a long day of total dependence on others. I felt a little frisky, for lack of a better term, and scratched that itch by immediately elevating to balance mode and doing things nobody else can do in a wheelchair, in front of people who couldn’t believe their eyes.

Because there are several Sandals resorts in Jamaica, they have a nice reception area at the Montego Bay airport. We checked in with the Sandals personnel, helped ourselves to a beer or two, and changed from our northern New England clothes to our Caribbean clothes. Sunglasses were donned, attitudes adjusted.

But we knew that one more obstacle faced us before we could truly unwind – a 1½ to 2 hour drive through twisting, mountainous roads to get us from the north coast airport to the south coast resort.

Sandals provides complementary transportation from the nearest airport to each of their resorts. However, their busses are not wheelchair accessible. If this situation arose in the United States, social convention and perhaps even legal requirements would compel the resort to provide me with accessible transportation at no cost. Not so in foreign countries. I had to hire my own wheelchair van taxi from a private company (which Sandals put me in contact with). The round-trip cost was $240.

We found our driver without difficulty and jumped on board the van.

It turned out to be rush hour in Montego Bay, Jamaica, so we inched along for a while. Once we broke free of the city the road became very narrow and kind of treacherous. There were no dividing lines painted on the center of the road. There were no sidewalks, curbs, shoulders, streetlights, or traffic signals. Goats and dogs wandered freely in the road. But like our unwritten agreement with our own neighborhood squirrels in America, our driver didn’t slow down for the goats or dogs and just assumed they would get out of the way in time, which they did.

The stark poverty in the rural areas was disheartening. It didn’t appear that the people were malnourished, and their clothes were not shoddy, but the houses and cars and stores and gas stations were dilapidated. It didn’t remind me of inner-city American slums where idle young men stand on street corners with nothing to do. These Jamaican villages probably are part of a fully functioning economic system, but a system that is primitive compared to modern countries. I can only assume that the social safety nets are few, and benefits like quality medical care are scarce. I would further assume that extended family bonds are stronger as a result, like they were in America a hundred years ago.

Finally, as the sun was setting into the Caribbean Sea we saw the marker for Sandals Whitehouse, and turned onto the access road. In an instant, we left the authentic Jamaica behind and passed into the fantasy world of a luxury, all-inclusive Caribbean resort. Although the abrupt transformation from poverty to opulence struck us as bizarre for a moment, we were too caught up in our adventure to dwell on it.

Having been to a Sandals resort just a year earlier, we knew what awaited us. There were moist, lemon-scented towels to wipe our faces and hands with. There were the uber-friendly attendants who would carry our bags and help us check-in. There was champagne.

We were starving, having eaten only airline scraps all day. We grabbed a handful of Red Stripe beers from our fully stocked refrigerators and wasted no time joining a weekly feast they called the Beach Party. This consisted of a Caribbean buffet, and hundreds of people seated at tables on the beach, devouring food and sipping fruity, alcoholic concoctions. Later, the feast was topped off with a variety of live, outdoor entertainment.

Only after we finished our first drink and our first plate of food did the four of us feel that we had recovered from our travels, and the vacation had truly begun.

Hello Paradise.

To be continued...

Other posts in this series:

Jamaica 2013, #1: Hello Paradise
Jamaica 2013, #2: The Good Stuff
Jamaica 2013, #3: Challenges
Jamaica 2013, #4: Taking the iBot to Jamaica
Jamaica 2013, #5: Flights - The Good, the Bad, and the Ugly
Jamaica 2013, #6: Final Thoughts

What Do I Do All Day? I Read Books

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

As a child I was a voracious reader. I often had multiple library books checked out at the same time. At school I remember the Houghton Mifflin readers with names like Kaleidoscope, Galaxies, and Serendipity. Every Friday at school we enjoyed something called the Weekly Reader. We also had a package of short pieces called SRA Reading Lab. Students would read a story printed on a fold-out card and then answer questions about it. As we progressed through the cards, we reached different color-coded achievement levels. Between my love of reading and my competitive spirit, I was always way ahead of the class in SRA.

I absolutely lived for the periodic Scholastic book orders. Deciding among all the interesting choices for books was one level of fun, but nothing matched the thrill of seeing the teacher open up a large cardboard box and distribute everyone’s books when they arrived weeks later. I smelled them. I ran my fingers over the glossy covers. I lost myself in their pages.

But then I grew up, and I no longer made as much time for reading. Oh, I’ve always had book in progress, but during my 20s and 30s it would often take me forever to finish one. I was too caught up in my life to slow down and smell the ink, as it were.

My young-adult equivalent of the Scholastic book orders was the Book-of-the-Month Club. Until the first Borders store was built near me, soon to be followed by the invention of Amazon.com, the BOMC was my primary method for getting a reading fix. I was surprised to find that they still exist today.

But since I went on disability retirement four years ago, I’ve been able to reignite my passion for reading.

As I mentioned in an earlier post, about two years ago I stopped reading books made from trees and started reading e-books, because paper books became too difficult for me to hold and turn the pages. My first e-reader was a Kindle, which I still use to this day when reading in bright sunlight. I’ve stayed with this platform. I have a Kindle reading app on my laptop, on my android cell phone, and on my iPad Mini. All of these devices sync with one another so that I never have to thumb through scroll through the pages to figure out where I left off.

So Mitch, what books are you reading these days? Okay, I’ll tell you. But remember, you asked!

I have a wide variety of interests. Here’s a sampling of what I’ve read in the last couple of years.

True Accounts of World War II

Although there has never been a period in human history with more suffering, there has probably never been a period in human history where more great stories were born. No need for fiction here:

· Unbroken: A World War II Story of Survival, Resilience, and Redemption, Laura Hillenbrand
· In the Garden of Beasts: Love, Terror, and an American Family in Hitler's Berlin, Erik Larson
· The Wild Blue : The Men and Boys Who Flew the B-24s Over Germany 1944-45, Stephen E. Ambrose
· Lost in Shangri-La: A True Story of Survival, Adventure, and the Most Incredible Rescue Mission of World War II, Mitchell Zuckoff
· Double Cross: The True Story of the D-Day Spies, Ben Macintyre
· I also read the well-known Vietnam War chronicle called Dispatches, by Michael Herr

Books about Neuroscience and Human Behavior

Since my diagnosis with a chronic neurological disorder, I’ve taken a keen interest in neuroscience, and just what makes humans so, well, human. I’ve read such books as:

· The Telltale Brain: a Neuroscientist’s Quest for What Makes Us Human, V. S. Ramachandran
· Being Wrong: Adventures in the Margin of Error, Kathryn Schulz
· Lying (Kindle Single), Sam Harris
· Free Will, Sam Harris
· Thinking, Fast and Slow, Daniel Kahneman
· The Believing Brain: From Ghosts and Gods to Politics and Conspiracies---How We Construct Beliefs and Reinforce Them as Truths, Michael Shermer
· The Power of Habit: Why We Do What We Do in Life and Business, Charles Duhigg

It is a commonly accepted notion that human morality does not fall in the purview of science. I respectfully disagree, and so does Sam Harris in his book:

· The Moral Landscape: How Science Can Determine Human Values

Novels

I try to alternate between nonfiction and fiction books. But I must admit, even the most important and enlightening nonfiction books can be a slog to get through. When I fall into a good novel, however, I consume it within a few days. Here are some examples:

· Another Roadside Attraction, Tom Robbins
· Stieg Larsson’s millennium trilogy: The Girl with the Dragon Tattoo, The Girl Who Played with Fire, and The Girl Who Kicked the Hornet’s Nest
· Stoner, John Williams
· Charles Frazier’s Nightwoods and Thirteen Moons
· John Grisham’s The Litigators, Calico Joe, and The Racketeer

Books about Humanism and Select Topics in Religion

As a secular humanist, years ago I read all the landmark atheist books by such heavyweights as Dawkins, Dennett, Harris, and Hitchens. But I also read less confrontational humanist writing such as:

· Good Without God: What a Billion Nonreligious People Do Believe, Greg Epstein

Being a nonbeliever in a religious world, I’ve probably read another 20 books of this sort over the past few years.

Still in the religion genre, I read two books by Ayaan Hirsi Ali. She is a former Somali Muslim turned atheist, who writes on behalf of women who suffer terribly in fundamentalist Muslim countries and families:

· Infidel
· Nomad: From Islam to America: A Personal Journey Through the Clash of Civilizations

I’m a bit of a feminist, so I also read a book by a former nun turned atheist who worked under Mother Teresa:

· An Unquenchable Thirst: A Memoir, Mary Johnson

I recently finished the memoir by Salman Rushdie, about his years in hiding, surviving the Ayatollah Khomeini’s fatwa:

· Joseph Anton: A Memoir

Books about Multiple Sclerosis

Not so much anymore. When I was diagnosed, and for the first few years after, I read everything I could about this mysterious disease. But there’s very little in print that gives more than a passing mention to my particular type of MS. I wrote a blog post a couple of years ago detailing all the MS/Disability books in my library, and I encourage you to visit that post if you are interested in this genre of reading. Going forward, if you find any new and interesting books on MS, please let me know.


Although I’m a huge sports fan, I rarely read books written by athletes. I find them to be filled with a little bit too much “I am living proof that you can accomplish anything if you just set your mind to it.” In fact, I wrote a blog post about that very sentiment. Nevertheless, I have in my Kindle queue right now a book called:

Francona: The Red Sox Years, Terry Francona, Dan Shaughnessy

As a lifetime Red Sox fan, I’m looking forward to that read…perhaps on a warm, sunny Jamaican beach.

Here are my other posts in this series:

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

Lessons Learned from My Photo and Video Archiving Project

This is a follow-up to my earlier post What Do I Do All Day? I Digitize and Archive Family Photos and Videos, and is only for those people who are interested in some of the nuts and bolts issues regarding a project such as this. The rest of you can return to chewing your toenails, plucking stray chest hairs, or whatever else you do to pass the time. 

Disclaimer: I’m no expert on this subject. I’ll discuss what I learned throughout my project, but by no means am I saying that my way is the only way, the best way, or even a good way. But it is one way.

Setting up the project

There are lots of proprietary programs that you can use to manage your photo database. However, it is my humble opinion that you don’t want to be reliant on those programs. What if they fall out of favor or go out of business? With this in mind, first you need to create individual .jpg files for each and every photograph. After you’ve built that folder, you can use these other programs for organizing, presenting, or sharing. My point is, don’t be completely beholden to any particular program.

You need to think about a file naming system

It makes a lot of sense to organize your photograph files by year. Of course, depending on your situation, you may also want to organize it in other ways, for example:

Photos taken by Dad when he was married to my mother, Jane

Photos taken by Dad when he was married to that slut, Betty

But within such categories, give serious consideration to organizing by year. This means that the first four digits of your filename should represent the year. The next few digits, maybe three digits, should be used to place the individual files in the order you would like them to appear, usually chronologically within the year. If you happen to have dates on all your photos, then you can use 2 digits for month and 2 digits for day. In my case, I usually didn’t have precise dates, so I just used three-digit numbers such that early in the year I was in the 100s in late in the year I was in the 900s.

So, a typical filename might be:

1964 133.jpg

or

1972 904.jpg

Note: For the remainder of the filename discussion I am going to drop the .jpg extension, with the understanding that it applies to all files.

At this point you may or may not want to add further qualifiers to your filename to describe where the source materials can be found. In the case of my father’s slides, I added three characters for the box number (I labeled each slide box with a two digit number) and three characters for the slide number within the box. In this way, a typical filename might be:

1964 133 B06S18

or

1972 904 B18S05

These are just examples to illustrate how you can use smart file naming to cross-reference your digital files with the actual photos. There’s a good chance that the original photos will never, ever be touched again after you finish scanning them, but you just can’t be sure.

Here’s another helpful hint regarding file naming. If you have five pictures that you are scanning, don’t name them this way:

1971 250
1971 251
1971 252
1971 253
1971 254

Instead, leave some space between them in case you want to reorder the files a little bit, or you decide to add files in between these at a later time. Maybe give them the following filenames instead:

1971 250
1971 260
1971 270
1971 280
1971 290

With a lot of my files I would also add some text at the end of all these numbers to indicate important information about the photo, such as who is in the photo and other pertinent information. I essentially embedded captions in the filename. Again, I know lots of proprietary photo management programs allow captions, but to the best of my knowledge they only work within that proprietary program. If anybody knows this not to be true, please let me know!

So I might end up with a filename something like:

1941 345 Venice Sturgeon 10th birthday.jpg

Hardware

For photo prints I used a flatbed scanner. Actually, it is part of my scanner/printer combo that I bought for just over $100. Here are some similar units.

I tried this style of sheet fed photo scanner but didn’t have a lot of luck with it. If you feed hundreds of prints into the scanner without a protective sheath, then the rollers get dirty and you end up with lines on your digital images. The sheath was too difficult for me to use, because of my poor hand dexterity. If you don’t have this problem, then perhaps this style of scanner will work for you.

If you do use a flatbed scanner, then for efficiency reasons you’ll want to place as many photos on the scanner frame as you can. Then you’ll need a piece of software to crop the individual photos out of the single scan that you get. I’ll address that further in the software section.

For slides, I used a special scanner that I purchased from Brookstone. I couldn’t actually operate the slide scanner, but my son Zachary did it for me at 10 cents per slide :-).

Software

Every time that I scanned a group of photos onto my computer, I would load that sheet of photos into a program called Photoshop Elements. I would then use Photoshop to crop this group of photos into the individual photos. I also learned some skills for improving the images in the following ways:

Brightness adjustments
color adjustments
cropping individual photos
repairing blemishes
straightening crooked photos

One image problem that cannot be improved with Photoshop, at least to the best of my knowledge, is to take a picture that has poor focus and bring it into focus. I just don’t think that can be done, unfortunately.

I took an adult education course in Photoshop to learn these very basic skills. I’m sure you could also learn introductory Photoshop skills from a book. Other than cropping the photos, you don’t need to learn any Photoshop skills in the short-term. You can always come back and work on improving the photos if you later acquire the skills to do so.

Digitizing videos

My parents didn’t have any videos, but Kim and I had a collection of video footage on VCR tapes. I borrowed a device from a friend of mine. I also had to borrow a VCR player, because we allowed all of ours to disappear.

It was pretty straightforward to bring all of the video footage onto my hard drive. Note that these files are very large, and if you are short on hard drive space that could be problematic. You can always offload each video onto other media such as writable DVDs after you digitize it.

I went one step further and edited the videos to crop out any boring or irrelevant parts. I don’t have the skill to improve the videos as much as I was able to improve the photos, but at least I trimmed a lot of the fat. The software that I used for this is called PowerDirector.

Protecting the files

Every night when you go to bed, you should assume that when you wake up the next morning your computer’s hard drive will have crashed, and you will have lost everything on it. So you should never leave too much material on your hard drive that has not been backed up onto another device. I employ the following backup strategy.

I have a backup, standalone hard drive that I plug into my computer USB port. I back up any data, music, video, or picture files that I have on my computer. I do this about once a week or so.

But that’s not good enough. What if you have a house fire or water damage, or someone steals your computer and backup hard drive? For these reasons you also need to have your files backed up off-site. I do this through a program called Carbonite. I pay about $50 a year and my files are continuously backed up. In fact, if I scanned in five new photographs, within a few minutes this program would notice the new files and back them up. If a plane were to crash into my house tomorrow, and I somehow survived, I could reload a new computer with my personal backed up files from Carbonite’s website.

So all my important files exist in three places: my internal hard drive, my external hard drive, and the cloud (as provided by Carbonite).

If you have any suggestions to offer based on your own experience, please share them in the comments section.

If you have any questions at all, don’t hesitate to contact me at email@enjoyingtheride.com. I’ll do my best to help you.

What Do I Do All Day? I Digitize and Archive Family Photos and Videos

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

I slowly turn the pages of a dusty old album, uncovering photos that I’ve never seen before, photos that perhaps nobody has laid eyes on for 50 years. The images looking back at me begin to paint a picture of what life was like for my ancestors in the 1940s, or 1950s, well before I was born. For a while it’s as if I’m on an archaeological dig, unearthing fairly interesting pieces of jewelry or pottery. Then I turn the page one more time, and a picture just jumps out at me. I pause and admire this rare artifact. Perhaps it’s my parents, before children, posing hand in hand. Or maybe it’s my mother, the sweet, god-fearing, angelic person that she was, her ball cap turned backwards, in a drunken embrace with her friends who are clutching bottles of whiskey. Maybe it’s a picture of me as an eight-year-old striking a thoughtful pose, belying a measure of wisdom not yet earned. These are the types of extraordinary memories unearthed by digging through long forgotten family photos. There’s nothing like it.

There are so many reasons that our knowledge of our ancestors is lacking, but some of those reasons do not exist going forward. We now have the ability, and I would argue the obligation, to share our lives, our times, with those who will follow us. One basic step toward that end is archiving family photos and videos. This is a task that I took up with vigor after I stopped working a few years ago. Only recently did I complete the first phase. The photos and videos are all digitized, and stored in a secure manner.

I realize that many of you are simply too busy for such a venture. But I have an abundance of time, so I took on this project from scratch, if you will. However, there are services available which will digitize these photos and videos for you. It may be expensive, but it is money well spent. Once you digitize the photos and videos, and store the files in a safe location (or two, or three), then you can take your sweet time doing whatever it is you decide to do with these memories.

But you need to get your images digitized, and you need to do it sooner rather than later, for several reasons. First, these old photos and videos slowly and steadily deteriorate over time. I saw this repeatedly with my parents’ oldest photographs, and it was a shame. Second, these old photos and videos are subject to being lost, or suffering damage from fires, floods, and leaky roofs, not to mention overzealous attic cleanings. Third, it really helps to catalog these items before the oldest members of your family have passed away. I started digitizing my father’s slide collection a few months before he died, and I was able to question him about several of the slides. However, much of my work was done after both of my parents had passed away. I so wish I could’ve asked about the circumstances of some of these scenes. But it’s too late now.

I enjoyed a mostly happy childhood, or at least that’s how I remember it. Throughout this archiving process I reconnected with my youth, and became newly acquainted with my parents’ early lives. Sure, many, if not most of the people in the oldest photos have passed away, but I feel their spirit anew. Along with the tender, nostalgic feelings come occasional moments of sadness and loss. However, my prevailing sentiments are those of connection, discovery, and delight. Because of what I’m doing with my ancestors’ materials and my own materials, future generations of my family will feel this way too.

It has been a physical challenge for me to scan so many photos. Because MS has affected the dexterity and strength in my hands, in most cases I was unable to remove photos from their albums or slides from their boxes, and then replace them after scanning. Zach and Kim helped me out significantly. Also, I took my sweet time. I probably never scanned more than 25 pictures in a single day.

Scanning videos was more straightforward. I borrowed a friend’s device that is placed between a VCR player and a computer, and the videos were simply streamed directly to my hard drive over the period of a few days.

Now that I possess this wonderful collection, both my parents’ photos and those of Kim and me (we didn’t start taking digital pictures until about 2000), I have many of options on how to share them. In addition to sending around DVDs, etc. to friends and relatives, I know there are online services to facilitate sharing. My parents’ collection alone is over 2000 photos, spanning 80 years, so I’m not sure which online venue is best. I think some sort of invitation-only format would be appropriate. Suggestions?

As many of you with MS can understand, after spending my entire adult life frantically advancing my career, it was more than a little deflating to suddenly stop. But it’s projects like this one that help take the sting out of being home on disability. I can’t think of a better use for my time.

In a separate post, I will share some of the nuts and bolts lessons that I’ve learned through this long process, for the benefit of those of you who might be interested in diving into a similar project.

Here are my other posts in this series:

1. I Watch (mostly) Quality Television
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
5. I Nap
6. I Blog
7. I Read Other People's Blogs

What Do I Do All Day? I Watch (mostly) Quality Television

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

Television is roundly criticized as a colossal waste of time. Granted, there’s a lot of crap on television that deserves to be ridiculed, but I’m here to tell you that there is a lot of quality television available as well. You just have to do some legwork (sample a lot of awful shows) to find the gems.

There are two basic categories of shows – network television and cable television. In general, the drama and comedy series on cable, such as those on HBO or Showtime, are superior to those on network television, such as ABC or Fox. But the seasons are relatively short for the cable shows. A typical run will be 12 consecutive, weekly shows, which are completed in three months. Most network shows spread 20 – 25 episodes out over approximately eight months.

Believe it or not (for those who know me, this is sarcasm), I keep a spreadsheet of the cable television shows I watch, how many seasons have been completed, and when or if the next season will begin. I don’t know why I make so many spreadsheets. You may as well ask me why I breathe so often.

Kim doesn’t care for television. She has only a few shows that she watches during the week, and I watch those with her. Other than that, I tend to record most of the programs that I’m interested in and watch them the next day while Kim is at work, rather than watching them live in the evening while ignoring Kim. Also, by viewing recorded shows I’m able to fast-forward through the commercials. This is particularly important during a political season, which seems to be most of the time these days.

Here is a list of the TV series that I watch on cable. I have rated each show on a scale of 1 to 10 for overall quality.

HBO

• Boardwalk Empire 6 (would get a higher rating if not for the over-the-top, gratuitous violence)
• Curb Your Enthusiasm 8
• Girls 7 (apparently I’m not too old and too male to watch this show)
• The Newsroom 7
• Veep 8

Showtime

• The Big C 7
• Californication 6
• Episodes 7
• Homeland 9
• House of Lies 4 (I’ve put it on probation)
• Nurse Jackie 8
• Shameless 7

Miscellaneous Cable Shows

• Breaking Bad (AMC) 9
• Downton Abbey (PBS) 8
• It’s Always Sunny in Philadelphia (FX) 6
• The League (FX) 6
• Mad Men (AMC) 9
• Portlandia (IFX) 6

Here are some network shows, of the comedy and drama variety, which I watch. I’m going to rate them on a different scale than the cable shows, because it’s a little bit of an apples and oranges situation.

• 30 Rock B (series finale this week)
• The Big Bang Theory A+
• Community C
• Cougar Town C (I’m hoping that this improves now that they are on TBS)
• Grey’s Anatomy C
• How I Met Your Mother A
• The Middle B
• Modern Family A
• The Office B
• Parks and Recreation A
• Smash (I fast-forward through most of the singing and dancing) B
• Two and a Half Men B (same rating I would’ve given it with Charlie Sheen)
• Whitney B (I think I’m in love)

Here are some other shows that I watch from time to time:

• 60 Minutes
• American Idol- once they are down to the final 12 (not sure I’m going to watch it at all this season)
• The Colbert Report
• The Daily Show
• Ellen
• Saturday Night Live
• The Today Show
• The Voice
• Sports, lots of sports
• News, lots of news (but usually it’s just on in the background because it tends to drive me crazy)

No apologies. This is what I watch, for better or worse. I don’t do cop or detective shows. They just don’t hold my interest. The only reality shows I watch are the occasional singing competitions. Notice that there are no History Channel or Discovery Channel, etc., shows in my list. Are there any that I should be watching?

I watch a lot more TV during the winter. In the summer, Kim is off for about eight weeks, and there are so many more options for passing the time in the real world. Even in the spring and fall when I can get outdoors by myself during the day, the television sits idle for long periods of time. But in the winter, if not for television I am certain that I would go stir crazy.

If television were my only answer to the question “What Do I Do All Day?”, then I would have a problem. But that’s far from reality, as you will see in my subsequent posts on this topic. To a certain extent TV educates me and makes me a more informed and well-rounded person. But primarily it just makes me happy, and isn’t that what entertainment is for. 

I look forward to your comments about specific shows, and about television watching in general.

Here are my other posts in this series:

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
6. I Blog
7. I Read Other People's Blogs

What Do I Do All Day?

In just a few months I will reach the four year anniversary of my disability retirement. People often ask me what it is I do all day while Kim is at work.

Where do I begin?

I am blessed with a curious mind, and some tools with which to exercise it. Throughout the day I rotate my attention between my LED-LCD TV, my iPad Mini, and my laptop computer. In good weather, which I haven’t seen for a few months, I also get outside and enjoy my wonderful neighborhood while Kim busts her ass trying to mold the minds of middle school children.

I also take my share of time for rest and relaxation. My wheelchair reclines so that I can make myself comfortable for a nap on very short notice. At times, I lament the fact that I am no longer a productive member of society in the traditional sense, but nevertheless I still find my life to be meaningful and, to a large extent, enjoyable.

Although I have a wide variety of interests which I pursue during the day, I do a pretty good job of not pressuring myself into getting anything in particular accomplished unless absolutely necessary. For a healthy person, this would not be an admirable trait. For a person with a chronic, disabling disease, which stress only exacerbates, it’s a wonderful thing.

My most demanding obligation is usually publishing a weekly blog post.

So I will begin a series of posts over the next year or so, sprinkled among posts on other subjects, where I describe what it is that I do to pass the time while Kim is at work. I’ll try not to bore you with minutia.

The first such post will be tomorrow, if I get around to it.

I know. You’re all jealous. Not everyone can lead as exciting a life as I do!

Everything Is Not Coming up Roses

(Photo credit: Jennuine Captures)

A recent article at everydayhealth.com had this headline:

10 Facts You Should Know About Multiple Sclerosis
Multiple sclerosis is now a treatable disease. Get the facts about MS, and find out why MS experts are upbeat about this common neurological disorder.

This just makes me mad!

For the average healthy person reading this article, as well as many patients who have the relapsing remitting type of MS, this is welcomed good news. But for those of us who are having our asses kicked by MS, this type of article does us a disservice.

It’s acceptable, and perhaps even admirable, to acknowledge the gains that have been made in MS treatment. 20 years ago there were no treatments. 10 years ago there were only three treatments. Today there are many choices of disease modifying drugs, and we are finally seeing oral treatments that do not require a shot or an IV. Yes, there has been some progress.

However, there are several factors supporting my position that our advancements in the field of MS treatment are woefully lacking. Although these disease modifying treatments tend to reduce the number of relapses, there is scant evidence that they provide reduced disability in the long term. Many patients see no benefit, or only temporary benefit, from these treatments. They are expensive – $50,000 per year is typical. They carry with them considerable and potentially serious side effects.

And here is my primary point. These drugs only work for, and are only approved for, the most common type of MS – relapsing remitting MS. They don’t work for secondary progressive or primary progressive patients, and we’re the ones who experience the most severe effects from MS.

MS drugs aren’t unique. This “treat the disease with highly profitable drugs, but don’t cure it” phenomenon occurs with all sorts of diseases. For a rather hard-hitting essay on our dysfunctional medical-industrial complex, read this Wheelchair Kamikaze blog post.

I’m not trying to rain on anyone’s parade. I don’t mind these types of articles, if only they took the time to acknowledge that so many of us still suffer terribly from MS, and we see little or no hope for improvements in our lifetimes. I am acquainted with many MS patients who struggle to get through each day. I even know several MS patients who expect to die from complications of the disease in the next few years. The picture is not rosy, as much as we would like it to be.

Note to journalists and doctors moonlighting as journalists: stop saying things like “this is a great time to have MS” or “multiple sclerosis is now a treatable disease” without qualifying your statements by acknowledging the significant number of us who are not benefiting at all from current, approved treatments. You are being thoughtless and cruel when you make these statements, although in most cases I don’t think you even realize it.

Before I get off my soapbox, I’ll point out that later in the above referenced article the physician-author makes several atrocious statements. First, she says that 85% of patients have the relapsing remitting form of MS. This is a basic mis-statement of an elementary statistical fact. Approximately 85% of patients are initially diagnosed with relapsing remitting MS, but more than half of those patients will eventually develop secondary progressive MS (which is not treatable). She also refers to progressive MS as “rare,” essentially dismissing us as the irrelevant fringe of the MS world. We don’t like that characterization, and it is not accurate.

So whenever you encounter the “good news” about MS, be skeptical. Remember those who have been left behind.

Note: Yes, I recently announced that I seem to be benefiting from an experimental treatment called intrathecal methotrexate. However, this drug is not FDA approved for multiple sclerosis. It has not been through double-blind, placebo-controlled studies to verify its efficacy. It’s apparently working for me right now, and for that I am extremely grateful. However, I live in fear every day that it’ll just stop working, because we simply don’t know enough about how this treatment affects multiple sclerosis.

I Ain’t Right in the Head

(Photo credit: PhotoJonny)

Multiple sclerosis is a disease of the central nervous system (CNS). The CNS consists of the brain and spinal cord. Something happens - nobody knows exactly what - which causes the axons (nerves) to be attacked by the immune system or in some other way degenerate over time. This can’t be good for my CNS. And since the CNS is kinda important to the rest of my body, it can’t be good for me.

Does the fact that some of these lesions are in my brain, not only in my spine, mean that I have a mental disorder? Well, MS is not typically recognized as such, but why not? It manifests itself as a combination of physical and mental/emotional symptoms, but it’s only the physical ones that are commonly discussed.

I think I’d like to be labeled as having a mental disorder. In Maine, we often describe people with mental disorders by saying, “He ain’t right in the head.” Such individuals are handled with kid gloves, and are granted significant leeway to commit all manner of social faux pas, without consequences.

If we can agree that I ain’t right in the head, then I should be allowed to do the following (hint, I already do):

• Say precisely what I feel, no matter the social norms that I may violate or the feelings that I may hurt.
• Dress myself in any manner which I deem comfortable, even if that means sweatpants and slippers at a nice restaurant.
• Occasionally forsake personal care such as shaving, washing, combing, or getting the gunk out of the corner of my eye.
• Tell the same stories over, and over, and over again (you should never point this out to me, and you must react as if this is the first time you’ve heard the story). This also applies to blog posts.
• Conveniently forget commitments that I’ve made.
• Categorically deny having ever made certain incorrect statements.
• Inexplicably forget your name, even if we go way back.
• Make you wait while I interact with my artificial memory (smart phone, iPad, and laptop) to supplement my damaged biological memory.
• Start speaking about a complex and important issue with apparent intelligence and gusto, only to lose my train of thought and my enthusiasm mid-speech.

Don’t be mislead by my occasional wittiness and clarity here at this blog. On average, it takes me 17.25 revisions before I dare publish something. I definitely ain’t right in the head.

Deep Sea Diving in a Wheelchair

Sue Austin describes her artistic wheelchair diving this way:

“It is the most amazing experience, beyond most other things I've experienced in life. I literally have the freedom to move in 360 degrees of space and an ecstatic experience of joy and freedom.”

This woman's indelible spirit is inspirational to both wheelchair users and walkers alike. Please watch her TED video, which includes breathtaking underwater footage (pun intended). I guarantee it will brighten your day.

Losses and Gains 2012

Given that we have now ushered in 2013, this seems an appropriate time to render an honest assessment of what I’ve gained and lost in the past year, and what changes may await me in the coming year.

2012 Negatives

• Started having mini panic attacks
• Two painful experiences with lumbar punctures

2012 Positives

• New, very accessible sidewalks were constructed in my neighborhood throughout the summer
• iPad mini (e-reader on steroids)
• No more restless leg syndrome because of pramipexole
• Panic attacks controlled by Cognitive Behavioral Therapy and Lexapro
• Wonderful vacations to the Bahamas and Cleveland (two tourist hotspots)
• Several new friends (like Darcy, for example)
• New Invacare power wheelchair (I still need to post about this)
• 6 intrathecal methotrexate treatments
• Negligible disease progression (presumably due to intrathecal methotrexate)
• New Dodge Grand Caravan wheelchair van (sold Kim’s car and my old van)

2013 Potential Losses (if my disease progression resumes these may be the things that I lose next)

• Ability to operate zippers (already very difficult)
• The rest of my personal grooming tasks
• Ability to sign my own name (that’s all I currently do for handwriting)
• Sitting up in bed, unassisted
• Transferring to and from my wheelchair, unassisted
• Feeding myself
• A few things that I can’t even imagine (the devil I don’t know)

2013 Potential Gains

• Another year of negligible disease progression (fingers crossed)
• Saving the iBot (Dec 31, 2013 is our “mobility cliff”)
• Trip to Jamaica (expect posts in March)
• Still more new friends (despite my lack of social skills, they keep coming)
• Entire summer in new, more walkable neighborhood
• A few things that I can’t even imagine (P. F. Chang’s opens a restaurant in my neighborhood?)
• Another year above ground

This 2012 assessment is much more upbeat than my 2011 assessment. That was a rough year for me, and so I was naturally pessimistic about 2012. But things have turned around, at least for the moment. By no means am I assuming that my disease stabilization will continue, but it’s a bit like winning a sports championship – nobody can take it away from me. My 2012 MS Success trophy now sits prominently on my mantle, to the left of the trophy for Stuffed an Entire Peanut Butter Sandwich in My Mouth that I won in 7^th grade, and to the right of the trophy for Made a Move on the Freshman Girl with the Nice Ass and Playful Personality that I won in 10^th grade.

Nobody can ever take these accomplishments away from me.