Tuesday, October 28, 2014

Political Advertising – Make It Stop!

I know this blog is supposed to be about leading a contented life as a disabled person. But there is something else I'd like to write about today, if you will indulge me.

Here in the United States we have a big election next week. It's what we call a midterm election, so we're not voting for President, but we are voting for just about every other possible position in federal, state, and local government.

I'm not here to advocate for any particular candidate or political party, 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. But we've been doing this 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.
In the last couple of months, my television viewing experience, and more importantly my enthusiasm for next week's 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.

In response to this deluge I conducted a scientific study of the candidates’ advertising. My extensive data analysis indicates that if a negative claim is made against an opponent, there is a 99% chance that said claim is at best distorted and at worst completely fabricated. The data further reveals that if a positive claim is made about a candidate, there is an 80% chance that said claim is at best distorted and at worst completely fabricated.

I have scientifically established, therefore, that negative advertising is less informative than positive advertising, and that positive advertising is far less informative than no advertising at all. Because of this, as I finalize my voting decisions, I will award “bonus points” to the candidates who inundated me with the fewest commercials (but I’ll give more bonus points for lack of negative commercials, as they are the worst kind).

OK, maybe I didn't really conduct a study, but I bet my percentages are pretty damn close to the truth.

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 my bonus point system). We should listen to debates, meet with the candidates, hash things out with our friends and neighbors, 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. Shame on us.

But it doesn’t have to be this way.

I'll make my informed voting decisions based on how I feel about the candidates’ ability to represent my family’s interests, 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?

Tuesday, October 21, 2014

The Top Ten Reasons I Want to End MS

When I checked my email this morning I saw a note from the National Multiple Sclerosis Society. They asked the question, "Why do you want to end MS?" Their goal is to have 20,000 people answer by October 31. Here is the link.

This is the kind of rah rah mentality that usually turns me off. It is blatant cheerleading. But I had no other blog post idea this week, so I thought I would give you my top 10 reasons.

Reason #10:
If we end MS, then we can put people like me back to work so we are financial contributors to society instead of financial burdens, and so that we can once again feel the satisfaction that comes with a job and a career. This time around I don’t want to be an engineer. I’m thinking astronaut or Rom Com movie star.

Reason #9:
If we end MS, then I can change the name of my blog from enjoying the ride to enjoying the mountain climbing. Who am I kidding? That was never me. It would be more like enjoying standing up to pee.  

Reason #8:
If we end MS, then we can make organizations like the National Multiple Sclerosis Society (bless their hearts), and silly campaigns like this one (and I mean that in the nicest way) obsolete.

Reason #7:
If we end MS, then we can reallocate the enormous sum of money spent on research and treatment. This money can instead go toward other diseases. But I would like a little of it to go to those of us who were cured of multiple sclerosis so we can vacation in the Caribbean – all of us at the same time and on the same island. What a party that would be!

Reason #6:
If we end MS, then we can answer, once and for all, the question of what was its root cause. I hope it’s not something too embarrassing though, like you catch MS from picking your nose or excessive masturbation.

Reason #5:
If we end MS, then I can reclaim my initials from this damn disease.

2011 08 202









Reason #4:
If we end MS, then those people who are cured will save money on wheelchairs, wheelchair vans, ramps, grab bars, home modifications, and a million other things. However, our costs for footwear will increase dramatically (a pair of shoes typically lasts me 5 to 7 years now).

Reason #3:
If we end MS, then people like me can get our lives back.

Reason #2:
If we end MS, then people like Kim can have the respite that they deserve. They won’t have to be caregivers in addition to all their other roles.

And my #1 reason is:
If we end MS, then our children and our children’s children will not be cut down in their prime. We will stand tall and say, “No person will never suffer this way again.”

Why do you want to end MS?

Tuesday, October 14, 2014

Adventures in Public Transportation #3

I posted #1 in this series in 2011. It was as about a transportation service for disabled people, called RTP. It sucks, and I haven’t used it since.

I posted #2 in this series in 2012. It was about my initial ride on the South Portland Public Bus system with Kim, and my first solo ride shortly thereafter. Big effing deal. What a rookie I was.

Fast-forward to 2014, where I am a seasoned city bus rider. That’s right. I ride the bus once or twice per week on average. My most common destination is the physical therapy clinic near the Maine Mall. I also go to the mall or to downtown Portland on occasion. My frequent bus travel started in the spring of this year, so I’m uncertain how I’ll like this mode of transportation in the middle of the winter. It’s going to be freaking cold.

My PT appointments are scheduled for 3:30 PM on Tuesdays and Thursdays. I leave my house at about 2:39 PM for the 2:40 bus. We have a new, enclosed transportation hub one block from my house, and it has pushbutton operated doors. The bus is anywhere between five minutes and twenty-five minutes late. So I sit in the transportation hub and read for a few minutes.

Any number of buses may pull up to the curb while I’m waiting, but the one I want is number 24B. When it approaches, I push the door-open button, exit the building, and situate myself squarely in line with the front door of the bus. This lets the driver know that I would like to board.

But before I can do that, the bus driver has to fold up one of the two bench seats to expose one of the two wheelchair stations on the bus. Usually that means evicting passengers who sat there at their own risk (there is a big sign indicating that they may have to move for wheelchair users). I then board the bus via a ramp or lift, endure the disapproving looks from the disenfranchised bench sitters, squeeze down through the aisle until I get to my spot, do a 180 degrees turn so that I am facing forward instead of backward, and then situate myself in the designated wheelchair spot. I perform this maneuver deftly, even elegantly, so I am surprised and disappointed that I’ve yet to receive any applause. Sometimes I take a bow nonetheless.

There are four tiedown straps and hooks on the floor. I soon learned that the cool wheelchair people do not ask to be secured. That process holds up the entire bus for a minute or two. I am now one of the cool wheelchair people. I suppose I’m not being absolutely safe, but neither do I worry during a bus ride where nobody wears a seatbelt, and several people on the bus are standing.

Once I am in position, the bus driver closes the door, folds up the ramp or the lift, and pulls away from the transportation hub.

I’m like a small child, in that once I get on this bus I have trouble keeping my eyes open. I typically recline in my wheelchair twenty degrees or so, elevate my feet a little, close my eyes, and rest. I only fell asleep once, and I missed my stop, so I don’t do that anymore. I’m not a pretty sight for people getting on or off the bus. They probably look at me and wonder just how awful my life must be, to have such a big wheelchair in such a reclined position – and the poor bastard can’t even stay awake! But I don’t care. I'm a hell of a lot more comfortable than they are.

When the bus approaches my stop I’m supposed to pull on a cord to alert the driver, but I have trouble with that. So, when I board the bus I tell the driver, “I’ll be getting off at Kaplan University.” So far they haven’t forgotten me. When we approach my stop, which is nothing more than a sign on the side of the street, the bus pulls over and we reverse the boarding process. I am dumped on the sidewalk of a very busy road.

I travel a couple hundred yards to Saco Bay Physical Therapy, where I push the door-open button, and I am at my destination. If things go well, I’m usually about ten minutes early for my appointment, and the therapists accommodate me. If things go poorly I might be ten minutes late, and again, the therapists accommodate me.

Kim gets out of work in time to pick me up at 4:30 PM. I’ve never taken the bus home because I don’t like the idea of sitting out in the elements by the side of the road for five minutes to twenty-five minutes waiting for the bus to pick me up. When I get into our wheelchair van Kim has usually been waiting for a few minutes, so she is typing away furiously on her smart phone. One of us will ask, "How was your day?" Then the other person will reciprocate. Next, the conversation inevitably goes toward, “So, what are we going to do for dinner tonight?” The last element of our meet and greet is to bitch and complain about the traffic or the idiocy of a specific driver. Once these compulsory requirements are met, we are free to discuss whatever we wish. Common topics are quantum mechanics, current events in the middle east, and our favorite political advertisements.

Tuesday, October 7, 2014

Sleeping Apart

We never slept apart out of anger. The only time Kim tried was a couple years into our marriage, but it didn’t work. We had a big fight because I was being an asshole. After going out with the boys, I stumbled home and found her on the couch with a blanket and pillow. I said, “Okay, let’s go to bed.”

“I’m already in bed,” she replied.

I went upstairs, grabbed my own blanket and pillow, and came back downstairs. I laid on the floor beside the couch and didn’t say a word. The gesture worked. We reconciled and went upstairs together.

Until I stopped working in 2009, I traveled between five and fifty nights each year for business. I typically spent between two and a dozen nights away from home each November for deer hunting. Once in a while Kim attended an out of town teachers’ conference. Sleeping apart was common and not particularly stressful for us.

This weekend we had friends over, and as I often do, I set the computer up to randomly scroll through our collection of photographs. I do this because once in a while somebody will notice an interesting one, and it will spark conversation. The picture on the right side of this post, depicting Kim in Chicago, popped up on the screen. Kim said, “That was three and a half years ago, and it was the last time Mitch and I slept apart.”

I’ve grown more dependent on Kim for assistance getting into bed, getting out of bed, and occasionally in the middle of the night. This has made it almost impossible for her to get away from me, or me away from her, for a single night.

Now that I have the overhead lift system, theoretically it is possible, but I would still be nervous. Maybe we’ll give it a try, or maybe we’ll play it safe. I’ll certainly let you know if we become daring enough.

Over the years I’ve seen interviews of sweet old couples who proudly proclaim, “We’ve never slept apart in fifty (or sixty or seventy) years.” I admit that I looked down on those people for leading unsophisticated lives. Yet here we are…

Tuesday, September 30, 2014

What I Remember and What I Don’t

I can remember my childhood telephone number: 207-794-8247
But I can’t remember the current cell phone number for either of my children.

I do remember where I was when the planes crashed on 9/11 and when I heard about the Space Shuttle Challenger explosion.
However, I don’t remember President Kennedy being shot seven weeks after I was born.

I remember a lot of things from my college graduation ceremony.
But I don’t remember finding out that I was accepted into college.

I can’t shake the image of Billy Buckner letting a routine ground ball go between his legs in what should have been the final out of the 1986 World Series, or whose house I watched it at in Cleveland, Ohio, or the premature, tear jerking victory speech I made just before it happened.
Yet I don’t have an image in my mind of my daughter taking her first steps.

I do remember every room in all six houses that we’ve ever owned.
I just can’t remember where we keep the broom in this house.

I remember turning fifty. It was a blast.
I don’t remember turning twenty-one. I assume I got very drunk.

I vividly recall the births of both of my children.
But I can’t remember finding out Kim was pregnant, either time.

I have at least partial memories of when my brother became temporarily blind (I was two and a half years old) and when my father told me about my mother’s accident (five years, eleven months old).
But I can’t remember a joke, not a single joke. And I can’t remember the name of that guy, you know, that guy with the thing…

I remember being diagnosed with multiple sclerosis.
But I cannot remember the last time I walked. I haven’t forgotten what it feels like, though, because I still walk in my dreams.

What can you remember? What can’t you?

Tuesday, September 23, 2014

The Difficulty I have Accepting Compliments

I receive so much positive feedback for my blog posts. I am referred to as inspirational, or courageous, or any number of similar accolades.

Of course this buoys my mood, and it motivates me to keep writing. We humans are programmed to welcome, even crave compliments. So please allow me to say a big THANK YOU to all my readers for your support! It means a great deal to me.

But I feel a little bit guilty. I inherited my resilience from my mother. It was an advantage of birth similar to when people inherit intelligence, athleticism, or good looks. In addition to my genetic advantages, I am fortunate in so many other ways. Here are just a few:
I’m a white male in America (three advantages in one)
I have an incredibly supportive wife, family, and friends (apparently advantages come in threes)
I have a certain amount of financial security (at least until the next market crash)
I don’t suffer from depression (am I crazy not to?)
I suppose I have been a good steward of these gifts, and that’s something. I’ve made the effort to share my experiences. I could have kept this all to myself, but I didn’t. I hereby accept any and all praise for being forthright.

But there are so many people who wake up every day and battle against incredible odds, and they don’t get the recognition that I get. I don’t believe I’m any more worthy of this praise than people who are having a rougher time than me, people who don’t enjoy the advantages I do, or people who can’t describe their lives in a positive and inspirational way because they are miserable.

I’d like to giftwrap the complement “you are such an inspiration” that I received in an email last week and deliver it to the person with MS who gives her best every day even though her husband just left her because he “can’t take it anymore.” I’d like to regift the “you’re a remarkable person” comment that I received at my blog and send it off to the cancer patient who is trying to make the critical decision about whether or not to continue treatment.

Since these exchanges are not possible, here’s the deal I propose. I’ll continue to welcome your compliments with appreciation and humility, and I’ll maintain my positive message. In return, we must all recognize those disadvantaged people who are not able to live a contented life – those people who are scratching and clawing just to survive. To me, those are the real, silent heroes.

Now, here is the question of the day for all of you armchair psychiatrists. Did I write this post for purely altruistic reasons, or am I subconsciously craving even more positive feedback along the lines of “No, Mitch, you really do deserve to be admired. Don’t sell yourself short.”

I wish I knew the answer.

Tuesday, September 16, 2014

I Have Difficulty Eating – But I’m Not Going to Starve

In the last year I’ve experienced increased difficulty getting food from my plate to my mouth. In an ironic twist, my skills at getting food on my shirt, on my pants, or on the floor have greatly improved.

We’ve been implementing new eating strategies for a while. I have plates with high sides so that I can push my food up against the edge in order to get it on my utensil. Below are two examples.


I eat one-handed. My left hand is not involved in this process at all, as it doesn’t have any value to add. So, because I push food up against the side of the plate, I need something to keep my meal from sliding across the table. We’ve purchased several sticky items that, when placed between the plate and the table, help keep things stationary. See the two examples below.


We have also modified my utensils. I have no need for a knife. I don’t have the strength or dexterity to cut food. I’m increasingly ignoring my fork, as spearing food has become more difficult over time, even lettuce in a salad. I mostly use a soup spoon for everything because Kim has already cut my food for me. In order to help with my grip on utensils, we’ve added foam to each of the handles. But even then, I had difficulty manipulating the utensils properly, so I asked my friend Michael to bend my spoons and forks in a couple different directions. Now, they work much better. See below.


It’s difficult for me to lift bottles, cups, or glasses to my mouth, so I tend to use straws these days. We found some reusable straws that we can bend into the exact configuration that we want. But I must admit that neither wine nor beer taste as good through a straw. See photo below.


As I stated in the first paragraph, I tend to spill a lot of food on my chest, belly, and lap. So we finally broke down and bought two adult bibs. They have saved a lot of damage to my clothes. I use them at home, but I haven’t got the nerve up to use them at a restaurant yet. See below.


But even with all these accommodations, I know that in the not-too-distant future I will no longer be able to feed myself at all. Already, Kim feeds me once in a while, depending on the food and on my level of hand and arm fatigue.

From a practical standpoint, there are worse things that can happen to me (and probably will). I’m not going to starve. People will always be around to feed me. But from a psychological standpoint, for both Kim and me, this is a tough one. The problem won’t be private dining, but rather group dining. I hate feeling pitied, and I know there will be a heavy dose of that sentiment aimed at me when I’m no longer able to feed myself.

But it doesn’t have to be that way. We have no plans to stop inviting people over or to curtail our dining out. I intend to sit back and enjoy my meals with guests, just like I always have. I’ll make conversation. I’ll smile and laugh. I’ll bore my companions with long stories and off-the-wall opinions. In the end, this is just another adjustment in a long line of adjustments that Kim and I will have to make.

It’s not the end of the world – not even close.

Tuesday, September 9, 2014

Our Love Affair with Cobblestone Streets and Brick Sidewalks

People are moving back to the cities. After decades of migrating away from one another, and building on huge, wooded house lots that isolated us from our neighbors, people are living in close proximity again. It’s a wonderful thing to see. Cities like Portland and South Portland, Maine are experiencing revitalizations.

As part of this rebirth, instead of scorning the old, industrial and warehouse districts, developers are reinventing them as condominiums, restaurants, and office space. And how about the sidewalks and the streets? What are we doing there?

City governments love to preserve cobblestone streets, for sentimental reasons. They remind us of the history of our great cities – the establishment of commerce, government, and prosperity in a region. We also love the old brick sidewalks. It’s feels significant to tread on the very same bricks that our forbearers forged and laid so long ago. Also, cobblestone streets and brick sidewalks fit well with the aesthetics of old brick buildings. They complement one another.

Ah, nostalgia. What could be wrong with it? Well, there’s a lot wrong with it if you are a disabled person.

The old brick sidewalks that are so faithfully preserved are usually uneven and sporadically damaged. The curb cuts and the transitions are typically steep and rough. Old brick sidewalks are difficult for people to navigate using wheelchairs, scooters, walkers, canes, and crutches. They impose a danger to the elderly and others who have difficulty walking.

Cobblestone streets, in and of themselves, are not so much of a problem, as long as they have an accessible sidewalk and flat street crossings. But that is rarely the case.

Our urban planners have a decision to make. Is it more important to preserve the past and have a consistent aesthetic in these revitalized downtown areas, or is it more important to make our cities accessible to everyone. Too often our city leaders are choosing to ignore the needs of their disabled citizens, and serve other interests instead. As a disabled person, and as an advocate for other disabled people, I find this troubling.

Disclaimer time – I manage to deal with the brick sidewalks and cobblestone streets. I am borderline fearless with my wheelchairs. I enjoy the downtown districts in my area despite the inconveniences. But I worry about other disabled people who choose to stay home rather than deal with our 19th century streets and sidewalks.

What do I want? I want our cities to replace old brick sidewalks with modern brick or concrete sidewalks, with ADA curb cuts. I want our cities to either replace cobblestone streets with paved streets, or ensure that there are smooth sidewalks and walkways for street crossings.

How are Portland and South Portland doing? I’m happy to report that in my South Portland neighborhood the city completed a major revitalization a couple of years ago resulting in new street tops that replaced aging pavement; new, wider concrete sidewalks that replaced crumbling brick sidewalks; lovely streetlamps that replaced outdated and mostly nonfunctioning streetlights; and updated utilities underneath the streets. I couldn’t be more pleased with these improvements, especially the sidewalks.

In South Portland there is still one cobblestone pathway that pedestrians must walk down, for approximately 100 yards, to utilize Thomas Knight Park or to walk across the Casco Bay Bridge to Portland. I’ve been working with the city for over a year on options, and it appears that they are ready to move forward with a paved pathway through Thomas Knight Park. It should be installed before winter.

Here is a very short video I posted in May 2013 at an MS website called My Counterpane, which should give you an idea of why cobblestone streets don't work with wheelchairs (if you are receiving this as an email blog post, you'll have to go to the blog website to see the video).

video


But in neighboring Portland, the situation is terrible. Old, brick sidewalks are in disrepair throughout the commercial district. Curb cuts and other transitions are downright dangerous. Cobblestone streets are sprinkled throughout the Old Port, and many times disabled people have no choice but to hobble over them if they wish to get from one part of the district to another.

When cities give such high standing to old brick sidewalks and cobblestone streets, they are choosing the past over the present. They are choosing nostalgia over accessibility. They are choosing form over function. Worst of all, they are choosing things over people.

How are your cities handling old brick sidewalks and cobblestone streets?

Wednesday, September 3, 2014

Anything is Possible if You Just Set Your Mind to It

A month ago I debunked an old adage – Everything Happens for a Reason. Now I'm at it again. This month I take aim at Anything is Possible if You Just Set Your Mind to It. A greater line of bullshit has never been uttered.

Why? Because we are only in control of a small fraction of what goes on around us. There's an element of randomness and luck to the universe.

Let's not delude ourselves into thinking that if we do everything right then the only possible outcome, or even the most likely outcome, is the attainment of our goals. Similarly, let's recognize that not every accomplished person deserves their standing, and therefore we shouldn't necessarily try to emulate the actions of successful people.

If I don't believe that anything is possible, then what do I believe? Glad you asked. I believe that it's a good practice to set lofty goals, but it's the journey that is important, not so much the success or failure of attaining the goal. Working hard, being part of a team, contributing to your own success and the success of others, learning, laughing, loving - these are the experiences that must be savored, the Ride that must be Enjoyed. If you focus only on the prize at the end, you miss everything important along the way.

My dream is that one day a wise and successful athlete, businessperson, or entertainer will say the following in their acceptance speech:

     "I was capable and committed. I persevered through adversity. Look what I accomplished! If you are capable and committed, and you persevere through adversity, you may also become as successful as I am. But you probably won't, through no fault of your own. I was extremely lucky, and the likelihood that you will be just as lucky is, frankly, minuscule." 

This speech may not strike you as inspirational, but it is truthful. I am more inspired these days by truth than I am by bullshit, and the older I get the better I become at recognizing the difference between the two.


Tuesday, August 26, 2014

A Firm Handshake

To say that I am a fan of the firm handshake doesn’t begin to do it justice. I don’t only enjoy or prefer a firm handshake. To me, it is essential. A wimpy handshake leaves me wholly unsatisfied with the interaction. Why bother to shake my hand if you can’t put a little effort into it? If you don’t care about delivering a firm handshake, then what else don’t you care about? Truth? Justice? The American way?

It doesn’t have to be overpowering – in fact that’s an entirely different problem. But it can’t be mushy or weak. And I don’t forgive a limp handshake from a woman any more than I do from a man.

Recently, my high regard for the firm handshake has become a problem, because I can no longer deliver one. I can’t uncurl my fingers far enough – I can’t make my hand sufficiently flat – to couple with your hand in the proper way. I often give you only a few of my fingers and no hand at all. If I do manage to seat my hand into yours, which I still accomplish once in a while, then you will find my grip to be underwhelming – generally mushy and soft.

I know you don’t blame me. Obviously, when someone is sitting in a wheelchair they are forgiven if they’re unable to perform certain tasks. What bothers me is that I enjoy the brief connection a handshake provides, and I miss that. It demonstrates friendliness and good manners. It clearly marks the opening or closing of an interaction. So many times, especially in my professional career, a degree of animosity and distrust developed over time with relationships that consisted of phone calls and emails only. But once we were together, once we shook hands, the distrust often dissolved and positive relations ensued.

Of course, the other reason that my recent inability to perform a proper handshake bothers me is because it marks continued disease progression. My right hand is my last decent appendage, and it is continuing to weaken.

So, if I cannot complete a handshake, what can I do instead? I am able to perform a fist bump. But they are a bit juvenile and informal, so they don’t suit every social situation. Additionally, I expect that fist bumps are merely a fad and will lose popularity like the high five, for example.

Hugs work too, but they are too intimate for every relationship or every situation. If you do come in for the hug, please approach from my left side. If you approach from the right side you may hit my joystick and send me flying. Yes, that has happened.

And of course, if you don’t mind a mushy, three finger handshake, then I’m still good for that too. The bottom line is that if we’re in a group and there are greetings going around, don’t avoid me because you’re not sure exactly how to proceed. Come on over and we’ll figure out something together.