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.

Thursday, August 21, 2014

Working It Out

People with MS find it particularly challenging to remain productive, and employed, in the workforce. The video below, called "Working it Out," was produced by a UK based group called Shift.ms. It's well done, plus, as a bonus, everyone in the video has an awesome British accent. See below (or click here).

Tuesday, August 19, 2014

Treatment Holiday or Something Else?

2014 08 200The photo at the right was taken on Sunday. Kim and I are on the cliff walk near Portland Headlight, about a five minute drive from our house.

Relapsing remitting MS patients usually take one of the FDA approved disease modifying treatments. But these treatments come with varying degrees of side effects and risks. As such, patients sometimes like to enjoy short periods when they don't take any disease modifying drugs at all. This is called a treatment holiday. It’s a little gift that they give to themselves for a few weeks or even months. But MS is a persistent disease, so it’s best to not leave it untreated for very long.

There are no FDA approved treatments for primary progressive multiple sclerosis, but that doesn’t mean I don’t try stuff anyway. Most recently I used intrathecal methotrexate for two years, but my last infusion was in February. Since that time I’ve not undergone any MS treatments. I don’t refer to this a treatment holiday, however. Holidays, or vacations, are for relatively short periods of time and have a defined end date. I’ve been without treatment for my MS for six months and counting, and I see no end in sight. I’m more inclined to call this a treatment drought.

This isn’t the only time I’ve been in a drought. My first one lasted a year and a half, back in 2004 and 2005. It happened again for about a year in 2009 and 2010. And there was nothing going on for parts of 2011 and 2012.

The goal with any treatment for PPMS is to slow down or stop the disease progression. I feel that this has only happened twice since my diagnosis in 2001 (I use the word feel because, unfortunately, assessment of disease progression is somewhat subjective for PPMS). The first time was during year one of the two-plus year Rituxan trial/debacle. The second time was during year one of my two-year intrathecal methotrexate treatment. I’m inclined to give credit to each of these drugs for my temporary plateaus, and then scratch my head as to why the treatments stopped working after a year. Of course, the other possibility is that my disease has its own natural ebb and flow, and I would have plateaued during those time periods even if I hadn’t been on those treatments. I don’t think so, but I can’t be sure.

As my friend Joe pointed out recently, there are psychological benefits associated with being on a treatment, even if its effectiveness is unclear. At least we are trying. At least there’s a chance that something amazing could happen. I wouldn’t mind a treatment holiday now and then, but these long periods of time between therapies aren’t good for me, emotionally or physically.

It’s like I am wandering in the desert. I ask myself, “When will it rain again? When will this drought end?”


Wednesday, August 13, 2014

The End of Summer

When Kim chose to become a teacher, shortly after we married, it seemed like a nice fit for our family plans. I would work the long hours and make the big bucks as a chemical engineer. She, on the other hand, would have a personally rewarding, if grossly underpaid career. Because of the favorable schedule of a teacher, Kim would still have ample time to spend with our future children. She was the nurturing type anyway, not me.

But now, with the children grown and with me in premature retirement due to MS, we look at her profession differently. Because she went on and earned Master’s and post-Master’s degrees, and she works two extra weeks per year due to her guidance counselor responsibilities, and she is employed by the public school district in the most affluent community in Maine, and she has 25 years of teaching under her belt, she is no longer grossly underpaid. Yet, she still has that favorable teacher schedule with every conceivable holiday off, ample vacations during the school year, and the Holy Grail of the teaching profession – summers off.

Quick clarification before I offend any teachers – by no means am I implying that teaching is easy or that teachers don’t deserve their time off. Furthermore, Kim, as well as most teachers I know, spends a lot of time at home working on school items. Still, it’s a sweet schedule.

We so enjoy her seven week summer vacation. It’s not all lying on the beach and sipping margaritas for Kim. She takes on home projects, sometimes well beyond her skill level, and they always turn out well. But in between the projects we do take in the wonders of summer on the southern Maine coast. We go to parks, outdoor concerts, restaurant decks with live music, July 4th fireworks, friends’ camps at the lake… I could go on.

For example, just last night we decided, spur of the moment, to go get a beer and listen to a local band at one of our beloved summer spots – Portland Lobster Company. I was that close to backing out on Kim. I’m so glad I didn’t. The band consists of three men, and they call themselves The Still. But on this night they had a female lead singer who was a friend of the band visiting from the West Coast, and this girl had pipes! Word quickly got around town and the place was packed. Towards the end of the evening an older couple, you know, about our age, sat down beside us. Of course Kim struck up a conversation and found out they were vacationing in Portland from the Washington, DC area. The husband sat an old wooden box on the table. Kim whispered to me, “What do you think is in the box?”

I guessed, “Maybe it’s a humidor. There is a cigar store just across the street.”

He opened the hinged cover in such a way that we couldn’t see the contents, and pulled something out that fit in the palm of his hand. His wife said, “Go ahead. Ask the band if you can play a song with them.”

Then we saw what he had – a harmonica. He opened up his box and showed us a large collection of harmonicas, one for every key, he explained. He seemed reluctant to impose himself on the band, but Kim joined his wife in egging him on. Finally, he approached the band leader at the end of a song and asked if he could play. The band leader agreed and set him up with a microphone. The song was Johnny Cash’s Folsom Prison Blues, one of my favorites. I can personally identify with most of the lyrics.
I hear the train a comin'
It's rolling round the bend
And I ain't seen the sunshine since I don't know when…
I'm stuck in Folsom prison, and time keeps draggin' on
But that train keeps a rollin' on down to San Antone..
Our new friend’s wife, a very conservative looking woman, whispered to us, “He plays a kick ass harmonica.” Damn straight.

At first our new friend performed in a laid-back and cautious manner. But as the song wore on, he gained confidence in himself, and won over the audience and the other band members. At one point the other musicians fell into the background and our friend stepped forward. In all my life I never saw anyone play the harmonica like he did. His hands were flying around in a blur. His cheeks were flapping in and out more quickly than seemed humanly possible. His whole body leaned into it and produced a harmonica solo for the ages.
When I was just a baby my mama told me. Son,
Always be a good boy, don't ever play with guns.
But I shot a man in Reno just to watch him die
When I hear that whistle blowing, I hang my head and cry…
The crowd went crazy with applause during his performance and at the end of the song. He then returned to his seat, carefully placed the harmonica back in the box, and finished his beer with us.

These are the kinds of things you don’t see if you always stay home on Tuesday nights, like we do for most of the year.

The only drawback to Kim’s summer vacation is that it always ends. That’s what we’re facing right now. Tomorrow, she goes back to work. But that’s okay, because somebody’s gotta bring home the bacon in this family. Plus, I still need to watch House of Cards on Netflix, and Kim has no interest in that.

I bet there's rich folks eating in a fancy dining car
They're probably drinkin' coffee and smoking big cigars.
Well I know I had it coming, I know I can't be free
But those people keep a movin'
And that's what tortures me...

Well if they freed me from this prison,
If that railroad train was mine
I bet I'd move it on a little farther down the line
Far from Folsom prison, that's where I want to stay
And I'd let that lonesome whistle blow my blues away.....


Wednesday, August 6, 2014

Nothing Happens for a Reason

Whenever I hear someone say, “Everything happens for a reason,” I usually blurt out, “Nothing happens for a reason!” Of course, the truth is somewhere in the middle, but I like the shock value of my reply. Granted, the tides do shift because of the relative positions of the earth and the moon. People sometimes do drown because they don’t wear lifejackets. Men in wheelchairs do get all the beautiful women because – I’m not sure why. I’ll have to ask Kim.

The point I’m really trying to make is that not everything happens for a reason. Many things just happen – the good, the bad, the insignificant, and the life-changing. Randomness and unpredictability, like it or not, play a lead role in our lives. This may be unsettling, but that doesn’t make it any less true.

When events work out nicely, which they often do, people are quick to proclaim that everything happens for a reason. But, if that is the case, I ask, “What is the reason for babies starving to death in Africa? What is the reason for women being raped in broad daylight in India? What is the reason for cancer?”

And of course, “What is the reason for multiple sclerosis?”

There is no good reason for any of this.

“Mitch, maybe you got multiple sclerosis so that you could help other people with MS through your blog.”

“If this were true then what was the reason that all these other people got MS? Was it so that I would have people to help?”

Since I don’t believe that everything happens for a reason, then what do I believe? Glad you asked. I believe that no good comes from lamenting our bad fortune. Where there is no master plan, no puppeteer of all things, there is no false expectation of fairness in life. There is no asking the question, “Why me?” There is only, “Why not me?” I find this strangely comforting.

So, the next time you are tempted to utter the statement, “Everything happens for a reason,” please consider how that might be taken by folks with chronic diseases. Think what it says about those around the world who lead tragic lives or those who died horrible, senseless deaths. There can be no divine or karmic justification for our worst suffering.

My argument does not preclude the existence of a supreme being. It only rules out a hyperactive God who is intimately involved in everything that everyone does.

If you are curious about my broader position on faith, you can read this previous post.