Adventures in Public Transportation #2

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

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

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

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

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

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

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

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

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

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

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

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

But would I dare try the bus system without Kim?

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

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

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

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

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

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

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

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

(Photo credit: Wikipedia)

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

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

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

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

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

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

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

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

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

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

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

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

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

A Lack of Focus

(Photo credit: gullevek)

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

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

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

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

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

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

I do now.

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

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

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

The End of Summer

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

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

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

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

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

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

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

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

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

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

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

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

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