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.