Merry Disabled Christmas 2012

From 2010...

Merry Disabled Christmas

Image via WikipediaThis year I endured disabled surgery

And read disabled books
I contributed to a disabled charity
And thwarted disabled crooks

I sailed on a disabled cruise
And piloted my disabled iBot
I sat for disabled interviews
And the good disabled fight, I fought

I starved myself on a disabled diet 
And took a disabled shot at a deer
I appreciated nature, and disabled quiet
And quaffed many a disabled beer

I hand-peddled my disabled bike
And hand-drove my disabled van
I spent disabled time with people I like
And I was a loyal, disabled, sports fan

I spent too much money on disabled wheelchair parts
And I made many a disabled friend
I touched a few disabled hearts
And a thousand disabled emails, I did send

It’s not that life is unfair
As you know, I’m not one to complain
You play the cards that are dealt you
If you live in the jungle, you better enjoy the rain

So during this holiday season
I urge you to seek out contentment
Don’t spend time searching for a reason
To feel self-pity, jealousy, or resentment

I’ll end my cryptic verse right here
And offer this sentiment to those most dear
I wish you a Merry Disabled Christmas
And a Happy Disabled New Year!

Consider These Issues…

(Photo credit: Wikipedia)

…because I can’t decide on just one topic this week.

Quote of the week

Agree or disagree?

“The reason people find it so hard to be happy is that they always see the past better than it was, the present worse than it is, and the future less resolved than it will be.” Marcel Pagnol

Many people suffering from progressive diseases would disagree, but more on this quote later…

WEGO Health Activist Awards

WEGO sponsors health activist awards to honor leaders who make a real difference in healthcare through their online efforts. One or more of you was kind enough to nominate me this year for “Best in Show Blog.” Thank you. Please look over all the award categories and nominate your favorite online health activists.

Update on Intrathecal Methotrexate

As I explained here, I now believe that intrathecal methotrexate is having a significant, positive effect on my disease progression. I’m not getting better, but I’m getting worse more slowly or not at all (for the moment).

This week I had my sixth spinal infusion of methotrexate. It went horribly. The doctor spent a long time poking and prodding before he found the spot. I don’t blame him. I seem to be anatomically challenged in this regard. But most importantly, I suffered no post-lumbar puncture headache, and I am no worse off for the harrowing experience. It’s a small price to pay.

Update on Christmas Cards

I recently spent an entire post describing how I would still send out traditional Christmas cards this year. The very next day I received such a lovely, online Christmas card that I was swayed. So I sent out about half of my cards this year as the online variety. Check out this website. I think it’s amazing.

Subjects I May Blog about in 2013

I’ve been percolating on a few ideas for blog posts next year.

• Self-driving cars: This technology is advancing rapidly. Why do I care? Because if I can own a self driving car, I’ll be essentially back in the solo driving business, as will many disabled people.
• Euthanasia: I’ve long been a believer that it is an individual’s right to die according to their own wishes. As a person with a condition which could at some point render life unbearable, this issue is particularly relevant for me, and I wish to advocate for others who feel the same way. Don’t worry, I’m very far from pulling the trigger, so to speak, myself. This is a potentially touchy subject, so I want to have some research complete before I launch my advocacy efforts.
• Disabled travel: Kim and I have a winter vacation planned in Jamaica this year. You can be sure that I’ll write several posts about the trip, and share photos as well.
• Continued updates on intrathecal methotrexate.
• My neighborhood overhaul: Throughout the summer of 2012 my entire neighborhood was refurbished. We have new street tops, sidewalks, and attractive landscaping. Wheelchair accessibility wasn’t bad, but now it is even better. At some point I will make a “Neighborhood Excursion” video and share it with you. I may have missed the weather window for this year, so look for a video in the spring.
• Another video blog: My first video blog last year, My Pet Peeves, was well received. These Vlogs are a lot of work to produce, so I haven’t attempted one since, but I hope to in 2013. Any suggestions for the subject matter?
• Continued updates on Save the iBot: Unless something changes in the next 12 months, 2013 will be the last year that the iBot is supported for service and parts. But stay tuned, because I haven’t given up yet, and neither has America’s Huey 091 Foundation.
• Memories: From time to time I will ask that you indulge me as I write about certain memories of mine that may be unrelated to multiple sclerosis or disability altogether.
• Recycled posts: The most dedicated readers among you may have noticed that several of my posts this year were updated versions of posts from previous years. I reserve the right to do that because I usually improve the post from its original, and let’s face it, some weeks I just don’t have time or energy to come up with original material.

Thoughts on Violence

For those of you who cite the Sandy Hook school slayings as further confirmation of the moral decline of our society, or as further evidence that violence in our modern world is getting worse by the day, I have some good news for you. Recent events notwithstanding, the overall level of violence in the world is declining, and has been for a long time, despite what our 24/7 media outlets would have us think.

This long-term trend towards less worldwide violence is expounded upon in some detail by Steven Pinker in his outstanding book The Better Angels of Our Nature. If you don’t want to tackle this 832 page behemoth, but you’d still like to hear the basic arguments, then I suggest you watch this TED video.

By no means am I trying to downplay the horror of what happened at Sandy Hook or other well known mass-murders. The world is still a violent and scary place, and we need to continue to advocate for social change that deters events like this from happening. But just know that, in the big picture, we live in the most peaceful time that mankind has ever known.

This is where I think Marcel Pagnol’s quote hits the mark.

“The reason people find it so hard to be happy is that they always see the past better than it was, the present worse than it is, and the future less resolved than it will be.”

Christmas Cards

Christmas postcard date unknown, circa 1900. (Photo credit: Wikipedia)

I can be pretty anal sometimes. For example, I keep track of all our spending, to the penny, in Quicken. I use Google Calendar to manage my time, including three reminders each day to take pills and a daily 4:00 reminder to watch Ellen. I have an elaborate document filing system that preserves the last seven years’ worth of mostly useless paperwork. Perhaps most telling, I can’t imagine how anyone could lead a productive and happy life doing anything less than what I do. Seriously.

But the epitome of my anality might be my system for managing Christmas cards.

I have an Excel spreadsheet that tracks every Christmas card we’ve sent or received for the past few years. Well, actually, for the past 22 years. One of my great disappointments, and something that I can never go back and change, is the fact that I didn’t do this for the first 4 years of our marriage. What was I thinking? How did I manage my Christmas cards back then? Did I, gulp, write it all down on a piece of paper?

For each person who we sent or received a card from in the past 22 years, I have columns for last names, first names, street address, city, state, and zip. After that I have a column for status – either active, inactive, or receive only. Then, for each year since 1990 I have two columns – sent and received. I put an X in the appropriate column(s).

We (and when I say we, I mean I) have some loosely enforced rules about whom we send Christmas cards to. For example, if we’ve been exchanging cards with one another for a while and you skip a year, that’s okay. You are forgiven (we are not a monster after all). But if you skip two consecutive years, that’s it. No card for you! However, we have granted several exemptions. My good friends and lifelong bachelors, David in Las Vegas and Louie in Cleveland, each get a free pass. Old people who simply can no longer manage to send out Christmas cards get a pass. Kim’s college roommates, Becky and Dawn, who just aren’t Christmas card type people, are each lucky recipients of a lifetime pass. We’re going to keep sending these people cards every year whether they like it or not. After all, they cannot employ an automated spam folder for snail mail, now can they?

Queen's Christmas tree at Windsor Castle 1848, adapted for Godey's Lady's Book, December 1850 (Photo credit: Wikipedia)

In our division of marital duties, I’ve always been the Christmas card guy. But thanks to MS, and what it’s done to my hands, I’ve had to drag Kim into this annual task. I still manage the Excel spreadsheet. I use Microsoft Word to extract data from the spreadsheet, creating a mailmerge document that I then print out using special label paper. This way Kim doesn’t have to write out the addresses on the envelopes by hand. Until last year I could still help with certain tasks like putting the stamps on the envelopes. Now, all those handsy jobs are completed by Kim.

I do consider the big picture once in a while. Must we continue with Christmas cards, at least in this way, indefinitely? First, I’m a modern, tecky guy (for someone my age). Isn’t there a way to accomplish this using online tools instead of the post office? I haven’t done a lot of research on the matter, but it seems unlikely that sending a virtual Christmas card would create such a warm, fuzzy feeling on the receiver’s end. This may not always be the case, but I think it is for now.

Second, I have to ask myself if all the work associated with sending out Christmas cards is worth it. How many people would think less of us if we didn’t? But we have such a long history (well-documented, at that) of sending cards that I hate to lose our momentum. For many people on our list, this is the only time we communicate with one another all year. And I must admit, it’s kind of fun to receive as many cards as we do. I assume, however, that if we stopped sending cards we would stop receiving them. So, for now we are forging ahead, but I can’t guarantee that at some point in the future we won’t let ourselves off the hook.

Incidentally, you may wonder why a blasphemous heathen like me sends out Christmas cards at all. Well, it’s because I choose to celebrate a secular version of Christmas. If you are a fellow atheist who thinks I’m selling out by participating in a Christian holiday, get over it. If you are Christian and you don’t feel that I have the right to participate in what you may consider your holiday, well, Christmas makes me happy. End of story.

Now back to the topic at hand...

I’d like to know your thoughts on Christmas cards. Do you participate in this age-old tradition? How do you make the job easier or add more depth and meaning to your holiday correspondence?

And finally, for all of you who enjoy Enjoying the Ride, whether you are in my Excel spreadsheet or not…

May Peace, Joy, Love and Good Health be yours during this Holiday Season and throughout the New Year.

Season’s Greetings from The Sturgeons!

Standing As Therapy

The human body is not designed for prolonged sitting. Office workers and truck drivers know what I mean. But at least they are able to stand up and move around before and after work and during breaks. Not so much with us wheelchair users.

Besides looking up at the world all day, which is bad enough, it turns out that sitting wreaks havoc on our bodies. This is in addition to the havoc being wreaked on us by whatever prevents our standing in the first place. Cruel irony. The list includes problems with joints, spinal alignment, respiration, digestion, spasticity, skin sores, and much more.

I recently met a new MS friend, Darcy, who lives just down the street. She is a wonderful lady whose disease course is quite similar to mine. I stopped over to visit with her a couple of weeks ago. As is typical with disabled people that I meet, we compared notes to see what we could learn from one another. Darcy and her husband have acquired some cool adaptive equipment. One item is an EasyStand 5000, pictured to the right. This is a type of device called a standing frame, which allows disabled individuals to elevate themselves to an upright position for some period of time. I like to refer to this as therapeutic standing.

Here’s a link that describes some of the health benefits of assisted, therapeutic standing.

These units cost upwards of $2500 new – a serious amount of cash. But Darcy’s husband obtained most of her disability equipment from Craigslist.com. Inspired by him, I logged on and found a slightly used EasyStand 5000, about two hours away, for only $600. Kim and I drove to New Hampshire and picked it up. In doing so, we met a very nice disabled man and his wife. Of course, I compared notes with the gentleman in the wheelchair, but Kim compared at least as many notes with his wife – notes about how to take care of occasionally stubborn, but strikingly handsome men in wheelchairs.

Below is a demonstration of how the standing frame works. There is a lever arm that I operate with my right hand in order to raise the seat up. At first, I didn’t think I would have enough strength. However, I learned that if I make very small movements with the lever arm I can ever so slowly raise myself up. Kim could do it twice as quickly for me, but I like accomplishing this myself.



There is a tray where I can place items to keep me entertained while I am in the standing frame. This is critical. As is the case with any piece of exercise equipment (which is essentially what this device is for me), the most likely outcome is that I’ll use it faithfully for a few weeks or months, then use it sporadically for a few more weeks or months, then I’ll put it on craigslist and brag to everyone if I’m able to get a better price than I paid for it. I don’t want that to happen.

Here’s a picture of me in full relaxation mode in my EasyStand 5000. I have everything I need: remote controls for all of my A/V devices, my iPad mini, and a glass of Pinot Noir. I’m up to 25 minutes and one glass of wine per standing session now. My goal is to stand up long enough to get drunk enough that I can’t stand up anymore.

I sense there is a flaw in my plan, but I can’t quite put my finger on it.

Forty million people need a wheelchair but don't have one

And for people in developing countries, if they do have one then there is a good chance that it does not meet their needs. Amos Winter, from MIT, is trying to do something about that.

Drinking the Kool-Aid

(Photo credit: rob.knight)

Drinking the Kool-Aid has become a metaphor of blind faith, or being committed to an idea without justification. The term references the November 1978 mass suicide, when 912 followers of the Reverend Jim Jones drank a Kool-Aid type beverage laced with cyanide.

Brand loyalty is one common manifestation of Drinking the Kool-Aid. This occurs when people mindlessly commit themselves to buying products only from their favorite companies, year after year, whether or not these products represent the best available options in the marketplace.

Question- what is perhaps the most well-known brand in existence today?

Apple.

I’ve never owned an Apple product before. This is partly because each time I’ve evaluated them against the alternatives I’ve never been able to justify the added costs. But this is also partially because I’ve always been turned off by the culture of unadulterated love and devotion for this company that Apple users embrace. I’ve always preferred to purchase computer and cell phone products where the software is not inextricably tied up with the hardware. For example, I might buy a Dell or Hewlett-Packard laptop computer, with an operating system made by Microsoft, and use Skype for videoconferencing and Google for emailing. I prefer to select my ingredients from a broad menu rather than having a plate brought to me already prepared, no matter how inviting the cuisine.

At least that was the case until Friday.

It all began on October 23^rd when Apple announced their new iPad Mini. There were two problems though. First, the so-called experts had predicted that the price would be about $250, but it turned out to be $330. Ouch. As a comparison, about six weeks earlier I had paid $199 for a Kindle Fire HD, a competitive product. Second, I didn’t like the idea of ending my lifetime boycott of Apple. But it was time to be a big boy. If the Apple product was the best option for the money, then I couldn’t allow brand disdain (the opposite of brand loyalty) to cloud my decision-making.

The iPad Mini was due to be released on Friday, November 2. Kim dropped me off on her way to school that morning. I was in the mall by 6:45. There were 13 people in line at the Apple Store in front of me. Not bad. This being my first Apple launch experience, I hadn’t known whether to expect 3 people or 100 people. There were also 5 or 6 blue-shirted Apple employees outside the store, and a horde of employees inside the store.

For the next 70 minutes I chit-chatted a little with other customers and the Apple employees. But mostly, I tried to play it cool and keep to myself. I didn’t want these Apple lovers to think I was one of them. I was just buying from Apple because I thought it was the product best suited for me, not because I was drinking any Kool-Aid.

I was in balance mode in my iBot the entire time, so I was happy to draw some of the “Oh my God, isn’t technology amazing” attention my way. I had one of the employees take my picture for this blog post. He told me he would also take a shot of me with my new iPad when I came out of the store.

At about five minutes of eight, the Apple employees went into full launch mode, which means they insisted on making this a festive occasion, much to my dismay. They got the crowd of customers, which was about 25 people by this time, whipped into a frenzy as if we were about to have gifts of riches bestowed upon us.

At precisely 8:00 the doors opened, and all the employees ran laps around us, giving and receiving high-fives. I allowed myself to leak a polite smile, but that was all. Then they started matching up customers with employees, and by 8:07 I was in the store with Chris. A couple of minutes later I had my iPad Mini. One aspect of the purchase experience that I absolutely loved was this question from Chris: “Would you like the receipt emailed to you, printed out for you, or both?” I took the first option.

I spent a few minutes with one of the technicians having him set up the unit for me. During that time, employees kept walking by and congratulating me, again, as if I had won some prize or accomplished a remarkable feat.

When I emerged from the store the employees who were stationed outside gave me a big ovation, and the gentleman who took my picture earlier insisted that he take another one, this time with the iPad Mini in my hands. It was all too cult-like for me. I had to get out! I brusquely told them “no thanks” and zipped down the hallway to catch my bus home.

What became of my Amazon Kindle Fire HD that I purchased six weeks earlier? I returned it for a refund. That hurt a little, as I’ve been a rather enthusiastic, and even loyal, Kindle user for years now. But I’ll still keep my original Kindle, because it works better in direct sunlight then any of the higher end e-readers. And I’ll keep purchasing my books through Amazon using the Kindle reader app on my iPad.

So how is the iPad Mini working out for me? I absolutely love it. It has an extensive array of accessibility features for different types of disabilities. And bottom line – it is an e-reader, but also a powerful and well-connected computer that fits in the pouch of my wheelchair. Well done Apple. Now please don’t roll out the iPad Mini II for at least a year.

My cell phone contract is up in March of 2013. Time for an iPhone?

Pass the Kool-Aid, please.

Is That the Best You’ve Got?

A cacophony of disastrous events has recently plagued Maine. The only reasonable explanation is that Armageddon is upon us- the End Times. Prepare for final judgment.

Or not.

Yesterday and early this morning we endured Hurricane Sandy, a.k.a The Storm of the Century. I live on the south coast of Maine, where I can see the ocean at the end of the street, about 100 feet from our house. My little corner of the Atlantic, however, is but a small cove in a protected harbor in a larger bay guarded by many islands. So it’s not like I expected the waves to be splashing up on my back deck.

The wind and rain started to increase beyond reasonable levels after noontime yesterday. The storm intensity steadily increased until about midnight, with gusts over 60 mph. The rain came in bands. Sometimes nothing was falling from the sky. Other times it felt like our house was being power washed by a thousand hoses at once.

Kim and I take great pride in our hearty, New England fortitude, particularly when it comes to weather. We don’t buy into the incessant hype in the days leading up to a storm. We play it cool, scoffing at Kim’s mother and our daughter (two separate people) who suffer from an innate fear of Mother Nature’s fury. Having said this, the storm was so fierce at times last night that Kim and I would spontaneously make eye contact, raise our eyebrows as high as humanly possible, and utter something along the lines of, “Holy crap!”

Unlike millions of people on the East Coast, we never lost power for even a second. My internet connection performed without interruption. In fact, the reception on my DirecTV dish never even blinked (which makes no sense to me because I’ve lost it temporarily in much milder storms).

We have some trees on our property that we feared could suffer damage, but there were almost no branches on the ground this morning. Many of the remaining leaves on the trees came down, but that’s all. Because of the powerful and unidirectional winds, our lawn appears as if somebody raked all the leaves for us into a couple of neat piles along one side of our house, ready to be picked up and disposed of. Kim is pleased.

When we woke up this morning the fury was over. It was a bit breezy outside, but not raining. Throughout today we had intermittent showers, although around noontime the temperature was up to 65°, and the sun was shining. I took my wheelchair around the neighborhood to assess the broader situation. Just like in my yard, there was almost no damage – just a bunch of leaves and a few branches down. As I zipped around the neighborhood I enjoyed the tropical air that Sandy brought us, which is a very rare treat at this time of year in Maine.

For our community, the storm of the century was no big deal, and is completely behind us now.

Disclaimer: in no way do I mean to imply that this was not a significant storm that caused distress to a great number of people. I’m just referring to my experience with Sandy.


In the introduction to this post I mentioned that there had been a cacophony of events, so I suppose I am obligated to bring up at least one other. On October 16, Maine experienced a rare earthquake. It was about 20 miles from my house and registered at 4.0 on the Richter scale. I’ve experienced a few minor earthquakes in Maine over the years. Unfortunately, I only felt this earthquake in retrospect. I was by myself in the house and heard what sounded like an unbalanced load in our clothes washing machine. After about 10 seconds the sound went away, like it often does, and I gave it no more thought.

About 5 minutes later my daughter texted me and asked if I had felt the earthquake. Our brains work in strange ways. I didn’t consciously run through the events and deliberately put all the pieces together. My brain subconsciously and instantaneously realized that this wasn’t laundry day, and that the noise I had heard from the washing machine was the earthquake. Damn! I so wish that I had realized what was happening while it was happening. That would’ve been much more enjoyable.

Enjoyable, you say? I have to admit, I get a charge out of these little natural disasters and “storms of the century” that we get in Maine. They break up the monotony and make life a little more interesting. Thunderstorms – love those too. The bigger the better.

I guess I also get a kick out of saying, after the mess is all cleaned up, “Mother Nature, is that the best you’ve got?” Being a man of science, I don’t fear jinxes or angry weather gods or any other superstitions.

Come to think of it, now that I’m feeling all cocky and badass, why not take this to the next level and say, “Hey, MS, is that the best you’ve got?”

In the end, Mother Nature or MS may do me in. But I’m not going to give either of them the satisfaction of seeing me sweat.

Political Advertising- Out of Control

Obama Change (Photo credit: Atlantian5)

Here in the United States we have a presidential election in two weeks. We are also voting for just about every other possible position in federal, state, and local government. During these election cycles we take great pride in demonstrating to our children the importance of democracy in action. I hope they’re not watching too closely.

I'm not here to advocate for any particular candidate or issue, but rather to publicly protest about how absurd the process has become. I understand that it's better than the alternative – not being able to choose your own representative government – however, we've been doing this free election thing for over 200 years now, and it is getting worse, not better.

Specifically, I'm here to complain about political advertising on TV. As a disabled person who sits at home all day, I tend to watch a lot of television (see how cleverly I worked disability into even a political blog post). I try to select only the quality programming, but I must admit that sometimes the TV is on in the background for no reason in particular.

(Photo credit: Wikipedia)

In the last couple of months, my television viewing experience, and more importantly my enthusiasm for the coming election, has been raped and pillaged by incessant political advertising. It would be one thing if the commercials were informative, well done, or even creative. But they are not. They are absolutely mind-numbing, on par with the most juvenile used car or discount furniture commercials, but not quite so truthful.

Based on my years of careful observation, negative advertisements have a 99% chance of being highly misleading if not outright lies. Positive advertisements have about an 80% chance of being highly misleading if not outright lies. Because of this, as I finalized my voting decisions I awarded “bonus points” to the candidates who inundated me with the least amount of their bullshit.

I can think of only one good reason why candidates spend so much money on television advertising. It must work. I would be ashamed of myself if I let the content of these commercials influence my vote in any way (other than through my bonus point system). We should listen to debates and read as much as we can (skeptically), meet face-to-face with the candidates (where possible), hash things out with our friends, neighbors, and bartenders (when we can do so without inciting a riot), but we can’t let these fraudulent commercials sway us! Since many of us apparently are duped by this disinformation, then I must reluctantly conclude that we are a weak-minded society, prone to manipulation. This makes me sad, as sometimes I fantasize that I live in a world populated solely by thoughtful, intelligent human beings (like people who read Enjoying The Ride, for example). Silly me.

I make my informed voting decisions based on the candidates’ ability to represent my family’s interests and the interests of our society as a whole, with adjustments made for how I was treated as a consumer of their advertising. The only way we can stop the insanity is to demonstrate to the next round of political candidates that mudslinging and tacky advertisements will not produce the desired outcome. All television commercials of the current style, even the positive ones, are a waste of our time and an insult to our intelligence. Make it stop!

Can I get an amen?

I’ll leave you with this. Those of you who are Facebook friends with me saw the open letter I posted on my status recently…

Dear Direct TV,

Today I filled out my absentee ballot and put it in the mail. Therefore, there is no need for you to continue to inundate me with political commercials. Please resume beer commercials and spoilers that reveal way too much about upcoming shows that I already planned on watching. Heck, even bring back cigarette commercials if you want to. Just stop bombarding me with these mind numbing, intelligence insulting, wastes of money and time. Thank you.

Mitch

Head Games

I decided to go to the grocery store one day last week while Kim was at work. For the first time in months it was cool enough that I really needed a jacket during the day. But I just couldn’t get the zipper started. My hands refused to cooperate. I had to wonder, did this mean I had operated my own zipper for the last time, or would things return to normal the next day and remain that way for the indefinite future?

Daylight, alright
I don't know, I don't know if it's real
Been a long night and something ain't right
You won't show, you won't show how you feel

This morning when I transferred from my wheelchair to my shower seat I noticed that it went slightly easier than normal. I wondered what that meant. Had I stopped getting worse? Was I getting better? Did the transfer really go well, or was it merely wishful thinking?

No time ever seems right
To talk about the reasons why you and I fight
It's high time to draw the line
Put an end to this game before it's too late

Head games – those of us with progressive diseases are particularly susceptible. The self-questioning can sometimes be controlled but never completely eliminated.

I have good days and bad days, but it’s not like people with relapsing remitting MS who have, well, relapses and remissions. The root causes of my good days and bad days, fairly normal biological cycles, are like everyone else’s. It’s just that when your health is marginal like mine, the result of a good day versus a bad day can be poles apart. These harmless, daily variations are tough to differentiate from long-term, more permanent changes. Hence, the internal head games.

I try to figure out if I’m getting stronger or weaker, better or worse. That’s one layer of head games. But there are several other layers that I employ too. For example, how much of my constant self-evaluation do I share with my spouse, caregiver, and love of my life (that’s all one person in case you didn’t know)? If I talk about it too often I am obsessing. If I never speak of it, I am in denial. If I share optimism with her too early in the game I’m guilty of falsely raising her hopes (this is an infrequent problem, given my steady progression over the years). If I share pessimism with her too liberally, it leads us both to a place where we might otherwise not need to go.

So near, so far away
We pass each other by 'cause we don't know what to say
It's so clear, I'm sorry to say
But if you wanna win you gotta learn how to play

I’m aware that this process works in both directions. Like me, Kim has to pick and choose when to speak up about her observations, or when to ask me questions that may clarify or confirm her observations. My disease progression is a roller coaster ride for both of us, but I’ve got a slightly better view than she does of what’s ahead on the track.

I daydream for hours it seems
I keep thinkin' of you, yeah, thinkin' of you
These daydreams, what do they mean?
They keep haunting me, are they warning me?

All these communications challenges exist, yet Kim and I have a wonderful relationship where openness and honesty are abundant. I can’t imagine how much more difficult this must be for couples who are not in such a good place. It tears marriages apart.

What about my doctors? They want to know how I’m doing – it’s their job after all. Sometimes I prepare a thoughtful response to this predictable question, often bringing notes with me. Other times I wing it. Nevertheless, I frequently leave the appointment unsatisfied with the conversation we had, not because of the doctor but because of me. Damn, I should’ve mentioned this, or crap, I meant to describe my situation this way. I am extremely witty and well spoken- in retrospect.

Why do I put myself through these compulsive self-evaluations? Haven’t I expounded here at length about how important it is to stay in the moment and enjoy each day for the gift that it is? When I’m not undergoing some experimental treatment (which is every treatment I’ve ever undergone because there is no approved treatment for PPMS), then I don’t obsess so much about my progression or lack thereof. There’s nothing I can do about it, so why worry?

But when I am evaluating a treatment, like now, it’s easy to fall prey to the head games. Those periods of time in the past eleven years when I have not been on any experimental treatment have, oddly, been some of the most stress-free stages of my disease progression. I’ve become skilled at acceptance. Fighting back, however, is hard work.

Next week I will have my fifth intrathecal methotrexate treatment. The doctor will ask me how I’m doing, so I guess I better think about a response. I can’t say that it’s definitely working, but I can’t say that it’s definitely not working either. I’m trying to figure it out, but the answer eludes me. So I’ll forge ahead and continue the treatment, while trying to stay grounded, objective, and hopeful all at the same time.

When I have dreams about suddenly being cured and standing up from my wheelchair, and I do have these dreams, I’m not only happy for myself, but also for Kim. Nothing in the world would mean more to me than removing the weight of my sickness from her shoulders. That’s why I keep searching for the positive every time I transfer from my wheelchair, every time I brush my hair, and every time I operate a zipper. Despite my better judgment, I keep the door of hope open, if only a crack.

Daylight turns into night
We try and find the answer but it's nowhere in sight
It's always the same and you know who's to blame
You know what I'm sayin', still we keep on playin'


Head games, that's all I get from you
Head games, and I can't take it anymore
Head games, don't wanna play no...
Head games

Note: To see all of my intrathecal methotrexate posts, click here. They are listed in reverse chronological order.

Yesterday, at the End of My Street

Yesterday, I was lounging around on my deck, looking out over the ocean. I noticed a bald eagle sitting on the rocks in the middle of our little cove. I grabbed my camera, put my wheelchair in third gear, zipped the hundred feet or so to the end of our road, and snapped these pictures.

In these photos the tide is about halfway in (or halfway out if you’re a pessimist). At this point there are usually about 50 seagulls, some ducks, and an assortment of other birds feeding near these rocks. Understandably, I don’t see any birds except the seagull that this eagle is devouring. I wish I had witnessed the kill. That would’ve been amazing.

Just last week I posted about how, since I now live in the city, I’m learning to take the bus for transportation. This experience with the eagle reminds me that South Portland still has a little of the wild side left in it.

After snapping the eagle photos, I turned my head about 90° the left and took in the view of this huge cruise ship. Almost every day this time of year there are one or sometimes two such cruise ships docked in Portland. Living in an area where both eagles soar and cruise ships visit is probably not a bad thing, right?

For another post about my beautiful neighborhood, click here.

Adventures in Public Transportation #2

Before I stopped working, I was a proficient airline traveler, even in my wheelchair. My adventures are usually more modest today. Now I’m dabbling in, gulp, city buses.

For some first-hand accounts of my business-related wheelchair travels, click here and here.

There is a bus system transportation hub only two blocks from our house. Although we moved to this neighborhood over a year ago, we never bothered to sample the public bus system until recently. The city website indicated that all buses are wheelchair accessible. I didn’t believe it, so Kim accompanied me on my first trip from our neighborhood to the Maine Mall.

We waited at our neighborhood’s outdoor transportation hub on a hot, humid August day. The bus was scheduled to arrive at 10:40 am. It arrived at 10:50 – not bad. I dreaded what sort of convoluted, humiliating boarding procedure I might be subjected to. The most horrifying public transportation experience I ever had was on the “green line” subway in Boston a few years ago. Kim and I had decided to attend a Red Sox game with our daughter Amy, who was enrolled at Bentley College just outside of Boston. The city’s public transportation website indicated that the green line was a wheelchair accessible train system. When we got to the boarding area we noticed that there were about four steps to get up onto the trains. As we pondered this obstacle, an attendant came along with an archaic device in tow.

I was instructed to drive up onto this portable lift. When I did, the attendant began turning a huge manual crank, leaning hard into the task, not unlike how a medieval tyrant would have turned the wheel of “the rack” in a dungeon, in order to torture a witch or a heathen. But my limbs were not stretched. Instead, every time he turned the ratcheted wheel I rose a little higher, until eventually I was at the level of the train, no worse for the wear (physically).

By now all the busy people on the train had been delayed, and it was obvious that I was the problem. As I attempted to proceed from the lift onto the train, everyone had to squeeze out of my way. I learned that the green line trains are always filled beyond capacity before and after Red Sox games. Wonderful. If there was a designated wheelchair spot on the train, with safety equipment such as tiedowns, I was never going to find it in this sea of humanity. I didn’t even try.

We had to reverse the process as we got off the train near Fenway Park. I vowed that I was never going to subject myself to using the green line again, and I haven’t. On the way back from Fenway Park we walked over to Northeastern University and boarded the orange line instead, which is a legitimately accessible train (as is the red line).

But my experience with the South Portland public bus system was nothing like that. A ramp automatically extended from the bus, and I drove straight on. There were two spaces reserved for wheelchairs, with a seatbelt system and four wheelchair tiedowns. Kim had me secured in no time. I didn’t feel conspicuous, and I didn’t throw the bus off schedule.

And we were thrilled to find out that the bus was comfortably air-conditioned.

This is probably a good time to make a confession. “Hello, my name is Mitch, and I’m a bit of a snob.”

Looking around the city bus, I didn’t feel like I was surrounded by the best and the brightest that South Portland had to offer. There were some, frankly, scary-looking characters on the bus. But if I’m going to live in the city, where lots of scary-looking characters live, and if I’m going to ride the bus, which is how lots of the scary-looking characters move about, then I better get used to it.

The bus took a circuitous route to the mall and made lots of stops, which accounted for dragging out what would normally be a 10 minute trip to 30 minutes. We arrived at the mall, debarked from the bus without incident, and enjoyed an hour or so of shopping. The next bus arrived on schedule at the mall. The ride back to our neighborhood was about 30 minutes once again. Success!

But would I dare try the bus system without Kim?

Ever since the new lineup of Amazon Kindle tablets and e-readers came out a few weeks ago, I’d been toying with the idea of purchasing one. The aforementioned Maine Mall has a Best Buy that was well-stocked with these devices. Kim had agreed to take me to the mall after work last Tuesday to pick up my newest toy. But on Tuesday morning I began to ask myself why this wouldn’t be a perfect opportunity to try going solo on the bus system.

I went to the transportation hub and waited for the 10:40 bus. I positioned myself near the doors as they opened. The bus driver indicated to me, however, that both of the wheelchair tiedowns locations were already occupied by other wheelchair users. This was not a problem that I had anticipated. I turned around and went home.

By about 12:30 I had shaken off the earlier disappointment, and returned to the hub to await the 12:40 bus. This time there were two open wheelchair spots, and I boarded without incident. The bus driver secured me, and we were on our way.

I went to Best Buy, picked up my new Kindle Fire HD, and got back to the pickup area just in time to catch the next bus home. When Kim walked through the door after work she saw the Kindle packaging strewn about the kitchen table and asked who had driven me to the mall.

She made a couple of guesses, and I just kept shaking my head, with a smile. Finally I let her off the hook. “Nobody drove me. I took the bus.”

“Of course! I completely forgot about that,” she confessed.

Before we discovered the bus system I was already somewhat mobile, given that I have a power wheelchair and lots of places to visit nearby. It was not uncommon for Kim to return from work and find nobody at home. She could always rest assured, however, that I must be somewhere nearby. But now when she comes home and doesn’t find me, I could be anywhere in the Greater Portland area, and I like that!

“Remember, There Is Always Someone Worse off Than You:” Is This A Valid Coping Mechanism?

(Photo credit: Wikipedia)

We’ve all heard this platitude before, and I wouldn’t blame you if you had some reservations about it.

After all, isn’t it a perversion of basic human decency to use another person’s suffering to improve our own circumstances? Shouldn’t the acknowledgment that others are suffering make us feel worse, not better? Does it demonstrate a lack of compassion that in some strange way we psychologically benefit from recognizing the distress of others?

No, no, and no. I don’t think it works that way at all.

The use of this coping mechanism does not indicate a lack of compassion or empathy. In fact, you almost certainly do feel empathetic toward the person or persons who you are comparing yourself to. This isn’t about that. This is about recalibrating your perspective.

By our very nature we tend to lament our losses and our misfortunes. This is not a useful trait, particularly if there’s nothing that we can do to improve our health problems. What we can do, however, is adjust our perspective. I believe that’s exactly what we are doing when we take comfort in the notion that there is always someone worse off than we are.

In addition to this perspective correction, you may find that the person or persons you are comparing yourself to are coping with their situation in an extraordinary manner. If you find this to be inspirational, that’s another sound coping mechanism.

To the extent that observing or considering less fortunate people motivates us to think more clearly and optimistically about our situation, then this coping mechanism is valid. It probably shouldn’t be your primary coping mechanism, and definitely shouldn’t be your only coping mechanism. But, if you can use the situations of others to improve your own perspective on life, without hurting anyone else’s feelings, then it’s a good thing.

I know it works for me. I’m in a pretty bad way, but as I observe other people with severe illnesses I often take solace in the fact that I enjoy many advantages over them. I know that sentence sounds awful, but it isn’t. I’m simply recalibrating my perspective so as to stop feeling sorry for myself.

Let me turn the tables a little bit. Since I’m dealing with some pretty bad health issues, presumably with some degree of fortitude, I am aware that people may look at my situation and take solace in the fact that they are not as bad off as me. How do I feel about that?

It’s complicated. I certainly don’t begrudge anyone the comfort they may experience by comparing their challenges to mine, especially if it allows them to stop feeling sorry for themselves. But on the other hand, I hate to think that I am being pitied. I realize that I’m drawing a very fine line, and I’m not exactly sure how to ask anyone to navigate that line…

Taking this whole concept one step further, if I were to find out today that I was going to die tomorrow, a big part of my coping mechanism would be to look back on how fortunate my life has been compared to the lives of others. I might think, “I enjoyed a better life than 99% of the people who are now alive or who have ever lived.”

This has got me thinking. If I had 24 hours notice of my imminent demise, in addition to reflecting on a life well lived, I would also complete the following tasks, without delay:

• clear my browser history
• show Kim where the money is stashed and how to pay the bills
• put up the Christmas Tree, even if it is summer
• make an appointment at the crematorium
• eat an entire chocolate cake and wash it down with chocolate milk (whole, not skim)
• change my Facebook status
• publish an offensive cartoon depicting the prophet Mohammed

A Lack of Focus

(Photo credit: gullevek)

Let me be clear about one thing – having MS absolutely sucks. It has impacted my quality of life in a significantly negative manner. But it’s a fifty steps backward and one step forward situation. This post is about one of those steps forward.

Here’s the deal. It’s not that my life before MS lacked purpose. It’s more like my life before MS had too many purposes.

Back when I was a healthy person I had so many interests, so many responsibilities, so much going on in my life that I lacked focus. Family has always been my number one priority, but Kim and I were, by our very nature, laidback parents. We didn’t believe in smothering our children with constant attention. Therefore, although being a good parent was a core value of mine, it didn’t consume every waking moment of my life like it does for some people.

My career was important to me too, but I was not a workaholic. I was considered smart and productive and easy to get along with (unless I completely misread the situation for 23 years). Many people wanted me to be part of their teams, task forces, or projects. Yet, I was rarely the expert on anything technical, financial, human resources related, or otherwise. I knew something about everything, but not everything about anything. Neither did I possess the degree of tenacity necessary to become CEO, for example. My career, although moderately successful, was unfocused.

In my healthy days I took part in many recreational activities, but I wasn’t a scratch golfer, a deep powder skier, or a marathon runner. I wasn’t wholly engrossed in any particular pastime. I supported various causes, but I was never one to spend vacation time building houses in third world countries. I had some interest in local government and civic activities, but I never ran for office or was chairman of any organization. I was a political independent, not identifying strongly with either major party. I long ago stopped attending church. I wasn’t focused on anything in particular during my free time.

Before MS I had many interests, but few passions. Life was good, and I knew that life was good, but I had so many balls in the air that I never felt focused.

I do now.

I remain an open-minded and thoughtful individual, sometimes to a fault (thoughtful in the sense that my head is full of thoughts not in the sense that I always consider other people’s well-being first). But today I spend less time spreading myself thin, and I spend so much more time being Mitch, the guy with MS. Living a contented, uncomplicated life as a disabled person, one day at a time, has given me the identity and focus that I was missing. It feels nice to finally know what I’m supposed to be doing with my life, other than being a good husband, father, friend, coworker, and golf partner.

Some people resist being identified by their disease, but I embrace it. Sure, I am more than my MS, but MS is such an important part of who I am. I’m going to make the most of my situation by advocating for the disabled community in general and people with MS in particular.

MS has stolen so much from me, but it did provide this new sense of focus. That doesn’t make up for all the crap I’ve been through, but, well, at least it’s something.

The End of Summer

That’s what they call Labor Day Weekend – the unofficial end of the summer season. And what a summer it was for Kim and me. We had long stretches of bright sunny days. Enough rain fell to keep the lawns green, but it seemed like the precipitation occurred only on weekday nights.

We enjoyed several cookouts and a few baseball games. We attended outdoor concerts and art shows. We sipped drinks and listened to great live music at our favorite venues in the Old Port. We relaxed together and entertained on our new deck. We had a memorable trip to Cleveland. We served as tour guides for many of our out-of-town friends, showing off our great city. It was a magical three months.

Yet, I’m so happy that it is finally over.

Why would I say such a thing? Is it the tourists that I hate? No, I don’t mind the tourists. Although they can become annoying, they make for great people watching, one of my favorite pastimes. Is it the few extra pounds I put on from all the socializing? Yea, that’s a problem, but I’ve got nine months to shed those. The reason that summer absolutely kicks my ass is the heat. It’s an MS thing.

We live within a few miles of some of the best beaches in New England, and I own a wheelchair that actually maneuvers well on sand, yet we didn’t go to the beach even once this summer. I can’t stand to be in the hot sun for more than a few minutes. On those rare days when we had low humidity and temperatures in the 70s, I was comfortable in the shade. However, when temperatures got into the 80s or 90s my options became limited, and I felt like crap.

The heat sensitivity that people with MS experience is temporary, and nerve conduction returns to normal (such as it is) once core body temperature cools back down. But while our core temperature is high, we experience new or worsened symptoms of MS. For me, it means that my already weak muscles just feel weaker, and that’s not good.

We do what we can to beat the heat. Kim and I manipulate the windows, shades, and fans using a combination of science, experience, and old wives’ tales. On the very hottest days, I park myself in the bedroom beside our only air conditioner. I wear loose fitting, light clothing all summer. I haven’t yet taken advantage of any of the personal cooling aids that are available, but I may try some next year.

In the winter we maintain our house temperature between 70 and 72 degrees. That keeps me squarely in my comfort zone. During June, July, and August of this year our indoor temperature was often over 75 degrees, and many times it was in the 80s.

In addition to the discomfort I experienced from this heat, the other way that it interfered with my life was that made it very difficult to evaluate the effectiveness of my latest experimental MS treatment- intrathecal methotrexate. It certainly doesn’t seem like this drug is helping me at all, but I don’t feel I’m giving it a fair shake until I see how I manage during cooler weather. I don’t want any intrathecal methotrexate benefits to be veiled by my heat intolerance. I just had my fourth infusion in late August, and I plan to have my fifth infusion in late October. If I still don’t see any benefits, only then it would be fair to conclude that the treatment isn’t working.

As if on cue, in the past few days the weather has changed for the better. The fall-like air is at once soothing and invigorating. It works on my weary body like a gentle, probing masseuse. Throughout the day I can now find the energy to accomplish tasks I feared lost to MS forever, when, in fact it had only been a temporary setback due to the heat. It’s as if my MS progression has gone back in time three months.

We live in one of the cooler summer climates in the country, here on the coast of Maine. I can’t imagine how much more difficult it must be for people with MS who live in hotter regions. I hope you all have central air-conditioning, but I fear you don’t.

I’m looking forward to a delightful couple of months before the cold weather hits. But even then, while I’m inside (which is the majority of the time) I’ll remain at a comfortable ambient temperature for most of the winter.

By next spring I will again look forward to summer, because there will be so many wonderful experiences in store for me. But I know that this summer fun will come at a price, and by Labor Day Weekend I will have had enough.

Response to Seymour

(Photo credit: SalFalko)

A few weeks ago I received this comment/question at one of my older blog posts. Rather than respond there, where very few people would see it, I thought I would respond here.

I was diagnosed with PPMS in NOV 2011. I am a public high school teacher and use a scooter all day. I use a wheelchair around town. Some days I can barely type enough to sign in to my computer to take attendance. Unfortunately, I am the only fully employed person in the house. I don't feel like I can even consider disability because of the insurance issues. My husband takes me to work and the kids to school each day, goes to his part time job, then picks us all up and takes care of our evenings. Any suggestions for making our situation better?

Seymour

Dear Seymour,

I’m sorry to hear about your difficulties. Unfortunately, your situation is not all that uncommon for people with MS, and highlights the fact that the medical model in the United States is seriously flawed. I’m not sure if Obama Care is the optimum solution, but I know that we need to do something to decouple health care from employment. Every other developed nation in the world already has.

I assume you live in the United States, and I assume that you would receive disability income through Social Security or your school, or both, if you were to go on permanent disability. Now is the time for you to research and completely understand those potential benefits.

I understand that your full-time employment is the only current source of medical insurance for you, your husband, and your children. If you need to go on total disability at some point, due to progression of your MS, there are several issues of which you are already aware. First, how will you, your husband, and your children obtain health insurance after you stop working?

Depending on which state you live in, how much disability income you would receive, and how much income your husband would earn from his part-time work, you may qualify for Medicaid health insurance benefits or other similar state programs. However, many states are considering cutbacks in those plans. Again, now is the time to research and completely understand your potential benefits.

Your employer may be required to offer you COBRA insurance coverage if you go on disability, but those premiums can be prohibitively expensive given what will be a reduced income for you. You should also speak with your local teachers’ union or your state’s teachers’ association to find out what disability and medical coverage benefits they may offer.

If you have paid Social Security taxes, which many teachers haven’t, and qualify for Social Security Disability, you will be eligible for federal Medicare two years after you begin receiving Social Security Disability benefits, which is six months after you stop working. So in the short-term, your medical insurance situation would be no better than that of the rest of your family, but in the long term you would receive Medicare benefits for the rest of your life.

If you have very limited income and resources, and are disabled, no matter whether or not you have contributed to Social Security you may also qualify for Supplemental Security Income, which would provide you with income and Medicare benefits immediately. But neither Social Security program will provide medical benefits for your family.

I know of several families that are in your situation – the person with MS is the only one with medical insurance benefits for the entire family. Of course, the most practical solution for you is to have your husband find employment which includes family medical insurance benefits. I know, however, that in the current economic climate this is much easier said than done. But I suggest that you and your husband pour as much energy as possible into making it happen, if you haven’t already. Be creative. Broaden his job search into career areas that he might not have otherwise considered. If he can secure this type of employment, that will free you up to stop working when and if your health dictates it, rather than holding on longer than you should.

The other approach is for you to find ways keep working as long as possible. Don’t be shy about requesting reasonable accommodations from your employer. The National Multiple Sclerosis Association provides an excellent resource for people in your situation:

http://www.nationalmssociety.org/living-with-multiple-sclerosis/employment/index.aspx

I wish I had more helpful advice to give you. Good luck! Please keep me updated.
Mitch

Readers, what other advice would you give Seymour? What have I forgotten or misstated?