“If I only had a little humility, I’d be perfect.”
  – Ted Turner

I’m predisposed to enjoy solitary pursuits like reading a good book, sitting by the fire, or watching quality TV. But once in a while I get the urge to abandon my safe haven and venture into the disabled-unfriendly world beyond, usually at my wife’s prodding. Wednesday was one of those days.

Let me set this up first. Kim is as frugal as anyone I know, and she comes by it naturally. When her father visits, his conversational ice-breaker isn’t something like, “I’m thinking about getting one of the new BMW’s, but it has to come with leather seats.” It’s more likely to be, “Guess how much I paid for these sneakers?” And a good guess will be something south of $4.

One way that Kim scratches her penny-pinching itch is to compete in radio station giveaways, as opposed to actually purchasing concert tickets, for example. In recent years we’ve seen classic bands such as Styx, ZZ Top, and others, all with complementary tickets. This summer we even saw the still-lovely Cheryl Crow at Meadowbrook. In 1986, when we were newlyweds and living in far away and exotic Cleveland, Ohio, of all places, she won a $1,000 shopping spree at the store of our choice. At the time we possessed little more than student loans, the newfound thrill of living on our own, and a few wedding presents. We chose J.C. Penny. Some of the items we purchased included: two tennis racquets (the new aluminum kind), a softball glove that I used maybe 5 times, and a blue dress that Kim wore on and off for 20 years.

Last week, one of the local stations was giving away second row tickets to our favorite stand-up comic at our favorite historic theater. When prompted, we needed to be the ninth caller. For particularly appealing giveaways like this one, Kim will deputize me as her assistant caller. I had the land line, and she had her cell phone. We heard the cue and started dialing. I get nothing but busy signals call after call. Kim was both caller number two and caller number nine. How does she do that?

The evening of the show, I ascended into my iBot, like a king to his throne, and we set out for the city. The first challenge was parking. There are five handicapped parking spots very near the entrance to the theater. We were optimistic, but it was not to be. Five people, four and a half of whom were probably less disabled than me, beat us to the punch, fair and square.

The next cluster of handicapped parking spots was a couple of blocks away. We were able to claim the last one of those, but this required Kim to pull alongside a snow bank. When we opened the van door the slide-out ramp began to extend. It sliced through the middle of the snow bank like a hot knife through butter. The problem was that the ramp rested on top of the remainder of the snow bank, teetering as if it was a plank on a pirate ship. Luckily, despite having been an imperfect husband all these years, Kim didn’t prod me out of the van with a sharp hook where her hand used to be. Instead, we retracted the ramp/plank, and Kim kicked away the bottom of the snow bank in her dressy boots. We re-extended the ramp, and I backed onto the sidewalk without incident. No splash, captain.

When we reached the theater lobby, I did what I love to do in crowds – I transitioned to balance mode in my iBot. Oh, the looks I get. Many people speak privately to one another, or so they think, as I go whizzing by. The most common remarks are uninformed expressions of amazement like “wow, look at that”, or “cool!” I carry on as if moving about on two wheels in a crowded theater is as common as is walking down the street in three dollar sneakers.

I carry with me and occasionally hand out some semi-humorous, semi-serious business cards. I’ve been through a few iterations of them. Here is my latest one, front and back:

When Kim picked up the show tickets at the radio station a few days earlier, we were pleased that one of them was an aisle seat. Shortly after arriving at the theater, even though it was half an hour before the start of the show, we decided to scope out our seats to confirm that I would be able to transfer, and indeed I could. Next, we returned to the lobby to mingle and get some refreshments. I bought a warm, gooey, chocolate chip cookie. Kim secured a pinot noir, served up in a plastic cup.

It’s not that I don’t like sipping wine at the theater; it’s just that I have to manage my bladder at events like this. Sure, there is a handicapped bathroom off the lobby, but if I’ve transferred to my theater seat, and Kim has already driven my chair to its out-of-the-way storage space, and then I have to use the bathroom, I would cause a scene in the second row of a comedy show (“hey buddy, you don’t have to laugh at my jokes, but do you really need to jump in your wheelchair and sneak off”), and I would miss about 20 minutes of the 90 minute show. So, no pinot for me.

As we were casually standing (and balancing) in the lobby, a very nice lady approached me. She asked if mine was the stair-climbing wheelchair, and I proudly responded that it was. Like so many people who introduce themselves to me, she revealed that someone close to her was also a wheelchair user – her husband. Because I am a member of the club myself, I’m allowed to ask, “If you don’t mind, why is your husband in a wheelchair?”

“He has MS,” she replied. Bingo! I love meeting other MSers or MS caregivers.

“Oh, so do I,” I exclaimed, affirming our fateful kinship.

“He has a wheelchair too, but nothing like this one,” she continued. I felt a surge of self-satisfaction. “He’s on a ventilator now, and is blind, so he doesn’t get out much. He tried one of those sip and puff controllers on his newest chair, but because he has difficulty breathing into the tube or even seeing where he’s going, it didn’t work out very well.”

That wasn’t what I expected to hear at all. I had been trumped! In most interactions of this sort I’m the incredibly disabled person. I’m to be marveled at and admired for overcoming obstacles to make it to the theater, mingle with the healthy folks, and nibble casually on cookies. I’m the role model…the inspiration.

When somebody tells me that a loved one is in a wheelchair or has MS, I almost always hand them one of my business cards so that they can visit my blog and be impressed by my wit and charm, and my noble attitude toward life’s challenges. I couldn’t, however, bring myself to give one of these cards to this wonderful lady. I didn’t feel worthy. It seemed presumptuous of me. If I were to meet her husband, a man who has been places I haven’t, places I may or may not go myself someday, oh the stories he could tell. He would be the mentor, and I would be the apprentice.

This lady was remarkably composed when describing her husband’s situation. Her voice didn’t crack, and she maintained a matter of fact, yet kind, expression on her face. She’s well practiced, like Kim. Taking her cue that it was socially acceptable to keep our happy faces on, I said, “Well, one of the best things about being in this iBot is that beautiful women like you, who wouldn’t normally give me the time of day, come up and talk to me.”

We all laughed and wished each other a Happy New Year. My business card stayed in my pocket. I regret that now. I should not have made the determination that my website was inappropriate for these brave people. It should have been their choice to make. But that opportunity has now passed.

As the lady walked away my wife turned to me and whispered, “I hate to hear stories like that.” I knew exactly what she meant.

I know that there should be a playoff system in College Football.
I believe that someday there will be one.

I know that I can become a better person.
I believe that I am on the right track.

I know I can lead a contented life, given my current circumstances.
I believe that this may not always hold true, however, as my disease progresses.

I know that I love my wife more than anything.
I believe that she understands this, even if I don’t say it often enough.

I know that modern democracy is superior to every other form of government so far conceived by mankind.
I believe that there must be a better way to govern, yet undiscovered- a government based on thoughtful, intelligent discourse rather than mind-numbing political rhetoric.

I know that one day we’ll cure MS.
I believe that it will be too late for me.

I know that I have many treasured friends.
I believe that I don’t foster these friendships as well as I should.

I know that the odds of winning the lottery are hopelessly slim.
I believe I still have a chance.

I know that questions of a moral nature are best resolved by choosing the path that maximizes human well-being.
I believe that eventually this concept will win the day.

I know that tomorrow the sun will rise in the east and set in the west.
I believe that each day has the potential to be an amazing one.

I know that, like everybody, one day I’ll die.
But first, I believe that I still have a bit of living left to do.

What do you know? What do you believe?

(Photo credit: nepolon)

Some Things I Miss

1. Standing up to pee

You ladies may not appreciate this, but the ability to stand up and pee five to ten times a day (depending on beer consumption rate), without dropping your pants and with at least a fair chance of hitting your target, is perhaps the greatest single advantage of being a man. If you can’t stand up, then you can’t stand up and pee. I miss that (ironically, I no longer miss though).

2. Going under the radar

It may be difficult to believe that somebody who chooses to balance on two wheels at the supermarket gives a damn about blending in. It’s not that I always want to blend in, or even that I often want to blend in. It’s just that I’d like to be able to go under the radar once in a while. When you’re in a wheelchair, be it a traditional wheelchair or especially an iBot, you always stick out like a sore thumb. Celebrities also suffer from this dilemma. But they can work around it with a hat and a pair of sunglasses. I tried it. Doesn’t work.

3. Typing

Dragon NaturallySpeaking is a wonderful program. It allows me to put words to a page and navigate around my computer hands-free. However, I really miss typing, for a few reasons. First, our house has an open layout. Therefore, when I’m dictating to my computer everybody within earshot knows what I’m saying. I like my privacy during the writing process. Also, I don’t know how many times I’ve started talking to the computer and my wife or kids have responded, “What?” Second, I had a pretty decent respiratory cold last week and didn’t feel like speaking to anyone, let alone my computer. Third, Dragon is only about 95% accurate. Sounds pretty good, right? Keep in mind that a typical blog post is about 1000 words. That means I have to find and repair about 50 errors in each post.

Although Dragon NaturallySpeaking is a wonderful thing, it’s just not the same as typing.

4. Breaking a sweat

I can’t remember the last time I broke a sweat. It’s impossible for me to move my muscles enough to cause my core temperature to rise enough to require my body to cool itself through sweating. Also, it’s uncomfortable for me to be in an environment where the ambient temperature is high enough to cause my body to sweat (without exercise). It’s not that I actually miss sweating. It’s that I miss getting exercise and spending time in the heat.

5. Having a career

I was not a workaholic, and I’d be lying if I said I loved going to work each day, but having a career was at times fulfilling. I always played an important role in the companies I worked for, and people seemed to want me on their teams. I miss the feeling of usefulness that came with my career. And the money. I miss the money too.

6. Being away from Kim

Don’t misunderstand. If you’ve been reading this blog you know that I love my wife dearly, and that even before my disability we spent most of our free time together. However, there were certain activities that I enjoyed which required that I be away from my wife. Some of these activities, such as going away with the guys for a hunting or sports weekend, are not practical for me anymore. I need Kim’s help just to get through the day now. Similarly, Kim used to get away for professional conferences and the occasional ladies weekend. She can still do that if we make certain arrangements, but it’s definitely not as easy as it used to be.

7. Playing sports and games

When I was diagnosed at age 38, I wasn’t playing in any men’s sport’s leagues. But I was active. I could shoot a little hoops, play catch, ping pong, bean bags, billiards, Wii, foosball, etc. I was competitive, and won my share of contests. Online cribbage and Pigskin Pickem’ just don’t satisfy my need for play and competition.

A Few Things I Don’t Miss

1. Golf

MS gets the credit for finally making me a quit a game that cost me too much money, caused me to spend too much time away from my family, and left me miserable more often than not. (Don’t send me links to handicapped golfing websites.)

2. Dancing

I always hated dancing. Now I can’t. Ha ha. (Don’t send me ideas for ways that I can dance in my iBot.)

3. Swimming

I could swim enough to keep from drowning, but it’s an activity I never enjoyed. We had swimming pools in two of our houses, and they were wonderful for the kids. I may have jumped in 5 or 6 times per year. I never found that the discomfort of having water get in my eyes and up my nose, or the initial temperature shock, were enough to warrant the meager benefits. I don’t miss swimming. (Don’t send me links to handicapped swimming sites.)

4. The bullshit part of my career

As I mentioned above, having a career was a partially rewarding experience, which I partially miss. However, I cannot count the times that I had to deal with absolute bullshit at work. The problem was not tyrannical bosses. Most of them were excellent mentors and all-around good eggs. But that didn’t stop them from asking me to do stupid things, for stupid reasons. More often than not this was the result of upper management feeling the pressure to meet month-end, quarter-end, year-end, or even minute-end goals. Satisfying this urge usually required the temporary (and legal) suspension of good business practices. Instead, we adopted poor business practices that would arbitrarily divert revenue away from the next business period, and place it in the current business period, even if this maneuver did not make customers happier or improve the long term health of the company. By playing this game, we set ourselves up to begin each business period already in the hole. Guess how we’d get out of it. That’s right. Near the end of the business period we’d again suspend good business practices so as to steal from the next period. Once you start playing this game it becomes self-perpetuating, an endless loop of jumping through hoops. Fulfilling? Not to me.

Other times I had to deal with bullshit from unreasonable customers, unreliable suppliers, or unnecessary labor unions. Throughout my career, the bullshit factor was often high enough to leave me with a bad taste in my mouth. As a result, my jobs were just jobs, not passions. If I had it to do over again, my primary criteria for deciding upon a career path would be to minimize the bullshit, knowing that I could never completely eliminate it. (Don’t send me links on how to overcome my disability and reintegrate into the workforce.)

Things I Expect to Miss a Year from Now

1. Driving

2. Cutting my own steak at dinner (note from future Mitch: true as of 11/15/10)

3. Getting in and out of bed unassisted

(Photo credit: Wikipedia)

I spend a lot of time thinking.

I think about things like what came before the Big Bang? If the universe is finite, then what is beyond its borders? How should I best take advantage of the gift of life? What is the allure of reality TV? What makes me me?

Consider that last question for a moment. What makes me me?

First, let’s go back to the beginning.  I am the product of my parents’ chromosomes combining to create my unique DNA. Although we tend to inherit the traits of our ancestors, the process by which an individual’s genetic code is formed has a degree of randomness to it. What if things had gone just a bit differently on that fateful day when I was conceived? Would I still be me? What if Dad had decided to have one more sip of his drink?  What if Mom had to sneeze?  What if a butterfly flapped its wings in China?  If anything had changed that day, then the random process of my DNA creation would have been ever so slightly altered.

If I had blue eyes instead of brown, intuitively I would say that I am still me. Eye color is incidental to who I am, not essential. If I was 5’ 7” tall instead of 5’ 11”, I would still be me. But what if my IQ was 20 points higher or lower, my hair color was blond instead of brown, I didn’t have a genetic predisposition to MS, my build was slight instead of husky, and I tended to be rash and emotional instead of logical and calm? When, in this continuum of differences, would I cease to be me and become someone else instead?

Of course this is just a thought exercise, because I am who I am, genetically. My DNA does not change. It was established at conception. But I love to ponder questions like this, nevertheless. I can’t help myself.

Now let’s look forward from birth, to try to answer the question “what makes me me?” My DNA is a blueprint for who I am, but because my body and my brain are also influenced by experiences and environment, my DNA does not determine exactly what I will look like or how I will behave throughout my life. For example, a person’s DNA would not account for a missing finger from a lawnmower accident. A person’s DNA would not completely account for psychological damage from abuse. So if we are more than our genes, then what are we, and what do we call it?

Sebastian Seung is an MIT researcher who is pursuing this philosophical question from a neuroscientist’s perspective. If these sorts of abstract mysteries intrigue you, you might enjoy the video, below. If you are too busy feeding the baby, looking for a job, or trying to figure out if your spouse is cheating on you, I understand and accept that you simply may not give a damn.

Note that this talk is designed for a general audience, not an audience of other neuroscientists.

If you did watch the above video, consider this with me. Since I have a brain disease, how has it reshaped my connectome? And if “I am my connectome,” as Seung hypothesizes, then who would I have been without MS? I’ll never know.
.

(Photo credit: Wikipedia)

From Dictionary.com:

fu·nam·bu·list [fyoo-nam-byuh-list]
–noun
a tightrope walker.

Those of us with chronic diseases hear conflicting advice on how we should best cope. On the one hand, we need to move beyond denial, accept reality, and make the best of our situation. On the other hand, we’re advised to never give up, stay positive, and hope for a cure. So which is it?

In my humble opinion, and I have some experience now in this regard, people with chronic diseases need to do both. They need to prepare for the worst by accepting their condition and making the most of whatever time and/or abilities they have left. But wait! Simultaneously, they need to hope for the best by remaining open to new treatments and staying abreast of current research. Walking the fine line between accepting reality and hoping for a miracle is a precarious balancing act.

A well-intentioned friend said to me a few months ago, “If you don’t have hope then you have nothing, right?” I had to disagree. Although I still have hope, I don’t think I rely on it. If I had no hope that my condition would some day stabilize or even improve, I wouldn’t necessarily be left with nothing. I would be left with acceptance, and that’s something.

Here’s another high wire act I’m navigating. I’ve chosen to write this blog in order to raise awareness of the issues facing people with disabilities. So I need to be sincere, forthright, and sometimes even blunt. Beating around the bush or painting a falsely positive picture won’t convey a clear message to the readers. Yet, there is a line that I don’t want to cross.

On the one hand, I am compelled to lay bare the unadulterated truth about disabled life, or at least my disabled life. On the other hand, one of the least admirable of human traits is self-pity. I hope I’ve provided enough commentary here about my intent to live a positive, useful, and even happy life (to the extent possible), that my circumstances do not come across as miserable. Even my parenthetical statement in the previous sentence raises the self-pity red flag, but I’ll ignore it. This is indeed a fine line.

Here’s a third high wire act of mine. Throughout the day there are several activities that are more difficult for me to perform than they used to be. These activities are congregated around the morning and evening time. Getting up, taking care of my grooming issues, dressing, and generally preparing for the day are no small tasks. Then, in the evening I have to undo what I did in the morning. There are certain steps that I still complete with ease. Other steps I can no longer complete. But the steps I’ll address here are the ones that I can sort of still complete.

Take for example, removing my trousers. I can unbutton them okay, and I can stand for the 2 seconds it takes to get them down from my waist to below my knees. Then the fun starts. Since I can’t move my legs, how do I get the trousers that are bunched around my ankles all the way off? I’ve devised intricate steps where I inch the trousers off little by little until I reach the point where I can just pull on both pant legs and complete the task.

Some days this goes well, and some days this goes poorly. Maybe Kim is standing nearby, and maybe she is elsewhere. On the one hand, I want to remain self-sufficient. On the other hand, I can become frustrated, and it is so easy to ask her for help. I walk the fine line with my trouser removing, and with 100 other tasks, between trying to maintain my independence and knowing when it makes sense to ask for help. The kicker, with a progressive disease, is that the line keeps moving. Oftentimes, a task that I am able to complete today, I’ll struggle with tomorrow and forever after. Imagine a tight rope walker uncertain of exactly where his next step should be.

Those are just a few examples of how I’ve become such a proficient funambulist, but not the kind that anyone would pay money to see. My high wire acts do not entertain spectators, yet they are no less perilous than the ones carried out by circus performers. Maybe I’ve got it all wrong. Perhaps I could sell tickets for people to watch me conduct a Google search to determine if Bee Sting Therapy is a cure or a scam, look over my shoulder as I proofread my blog drafts, or sit on the edge of my mattress and watch me struggle to put on my flannel pajamas?

Or maybe a reality TV show…cameras stationed all over my house.  I’m calling the networks.