Our New Haven

Two weeks ago I wrote about our shiny, new wheelchair van. This week I will write about something much simpler and less expensive, but something which will impact our lives similarly. Don't get me wrong. The wheelchair van is wonderful. But we already had one. This van is just newer and has a few more bells and whistles.

When we moved into our house last summer we were excited about the small porch facing the ocean. The gentle breeze coming off the water warms you in the spring and fall, and cools you on uncomfortable summer days. But small is the operative word, and wheelchairs don't deal with small very well. We enjoyed some time on the porch, but not nearly as much as we had hoped we would. We spoke of expanding it one day, and we recently did just that.

Before





After




The new deck is rather simple and unadorned, but it holds great promise for our emotional well-being. The deck is situated such that, as long as there is some sun in the sky there is a portion that is bathed in sunlight and a portion that is protected by shade. Depending on the ambient temperature, I usually have a clear preference for one portion or the other.

This is different than the decks at our previous houses, though. We had always lived in suburban-type neighborhoods, and our decks were private and afforded us some intimacy with our trees, lawn, and sometimes even woods.

This house, and therefore this deck, is in an urban neighborhood, right in the middle of everything. We're adjusting to the fact that people walking their dogs or neighbors mowing their (tiny) lawns can get a good look at us barbecuing, eating, and lounging. I'm almost used to it already.

Sometimes, whether you have an incurable chronic disease or just a bad day at work, it's the simple things like your own little haven that can provide the most comfort. 

All that the deck is lacking is your company. Stop by and join us for a beer, a sip of wine, or a tall, cool glass of lemonade. Bring a dog treat.

Don't Hate

average margins of victory in the past five presidential elections. (Photo credit: Wikipedia)

I have a lot of conservative friends, most of whom are honest, genuine people who only want to make the world a better place. I have many liberal friends that I would describe in exactly the same manner. In fact, I can blend in quite nicely with either crowd. I expect some of my liberal friends would be surprised to find out how conservative I am on some issues. Similarly, I expect many of my conservative friends would be flabbergasted to learn that I lean liberal quite often.

I don't think this assessment speaks to my political elasticity as much as it speaks to the political egocentrism of so many liberals and conservatives. A lot of the politically opinionated folks I know surround themselves with like-minded people, and articulate their doctrines as if nobody could possibly think differently than they do.

I must admit to a certain level of hypocrisy, though. Although I won't back down from a good debate once it is initiated, my innate tendency is to avoid conflict. For that reason, I allow my silence to be interpreted as agreement when I really shouldn’t. I'm working on this. But it is a balancing act between being absolutely truthful all the time (hard and dangerous work) and being comfortable and friendly (easy and safe work).

From my unique perspective as a centrist, I notice that both groups too often assume the worst about the other. Each group thinks the other is morally corrupt and downright dangerous, not just wrong about the issues. I'd like for people to start assuming that the other side is simply wrong about the issues, and only arrive at the “morally corrupt and downright dangerous” characterizations if the given individual deserves it.

I'm not saying everyone should be a moderate like me. I'm so open minded sometimes that I'm afraid my brains will fall out. But I am saying everyone needs to be respectful of others, and resist the urge to personally demonize those who see the world differently.

Advertising by political candidates and mainstream media coverage of politics only serve to further whip us into a frenzy of extremism. But that's a subject for another blog post.

I’ll make this plea here. No matter how much you may differ with the political philosophies of the party at the opposite end of your spectrum, please don't assume that their motives are insincere. Everyone I know wants to make the world a better place – a more just, fair, happy, and prosperous world for everyone. If we all accepted this notion then political discourse would become more civil, and real work could be accomplished.

Think about it.

Wheelchair Vans

As I've written here before, I'm a lucky guy for so many reasons, and here’s another. Last month we mustered the financial resources to purchase a brand-new, 2012 Dodge Grand Caravan wheelchair accessible van, which is pictured to the right.

I'm sure many disabled people would love to be in my shoes, but simply can't afford something so expensive. Nevertheless, part of me is indignant about the whole thing. For the same amount of money that we spent on this glorified soccer-mom-taxi, a healthy person could've purchased any of the vehicles below.

2013 Audi S5 Premium Plus Quattro
2012 BMW Z4 Convertible
2013 Infiniti G Coupe
2012 Jaguar XF Sedan
2012 Mercedes-Benz E-Class E350 Luxury

But noooooo, I had to buy a minivan, and an SE model at that (no backup camera or in-dash GPS)!

All kidding and self-pity aside, this van will have at least as much positive effect on my life as any Jaguar does for its owner. I’m extremely grateful that I have a new wheelchair accessible van, but I am saddened by how many disabled people are not so fortunate.

It's woefully ironic that, on top of everything else, people with MS face increased financial challenges. For many, our ability to work is diminished or eliminated, and so therefore is our income. And on the other side of the ledger, our living expenses soar due to medical bills and disability accommodations (such as home modifications, mobility aides, and adapted vehicles). Those very same items that the disease necessitates us to acquire are the ones that our strained financial resources so often cannot afford.

What, exactly, constitutes a wheelchair accessible van? What do you get for all that money? There are several configurations, but the most common one involves taking a standard minivan and modifying it in the following ways.

First, the company making the modifications, which is not the original equipment manufacturer (OEM), removes the floor and installs a new floor that is between 11 and 14 inches lower than the original one. This is required to increase the headroom inside the van. This increased headroom is distributed in such a way that the vehicle is both taller than standard and has less ground clearance than standard.

Second, they install an automatic ramp system, usually in the passenger side sliding door, so that with a push of a button the door will open and a ramp will slide out or unfold.

Third, they modify the rear suspension so that the van can "kneel,” which means it literally lowers itself closer to the pavement when the ramp is extended so as to decrease the ramp angle and the effort required to climb it.

All wheelchair accessible vans also include a standard, manually operated, chair tie-down safety system consisting of straps, ratchets, and hooks. This prevents a wheelchair from sliding all over the place during normal driving, or more importantly, during an accident. But the system is cumbersome, and so many people, including me, take shortcuts – hooking up only one or two of the four straps for short trips, etc. I know. I'm bad.

Other than a few more tweaks to make this all fit in with the OEM chassis, that’s it. That’s all you get for your money.

The above modifications approximately double the price of a minivan. This means that a new wheelchair accessible van, depending on trim level, typically costs between $48,000 and $60,000, instead of $24,000-$30,000. This is just for the standard configuration with no additional disability-related equipment.

Many wheelchair users, however, require further modifications such as a six-way power driver’s seat, which makes it easier to transfer from a wheelchair to the driving position. This modification costs between $2500 and $3000.

Some wheelchair users require hand driving adaptations, which cost at least $1000 for the most basic setup, and can be much more expensive for advanced driving systems such as joystick controls.

Many users get around the cumbersome tie-down system by installing an EZ-lock wheelchair docking system, or similar, which greatly simplifies the entire process. This may be installed in the driver’s position, so that the user can drive the vehicle while sitting in a wheelchair. It may also be installed in other positions in the van where the user may typically sit in their wheelchair. These docking systems cost about $1800.

What prompted Kim and me to make this substantial investment? In 2010 she purchased a new Mazda 3 sedan. She loved the car, but only put about 5000 miles a year on it. She drove it to school, which was a short commute, and when she ran errands without me, which wasn't all that often.

A couple of months ago we asked ourselves why we were still a two-car family when we only had one driver (you can read here about my 2011 decision to stop driving), and when we now live so close to everything. We felt that it would make more sense to sell the 2010 Mazda 3, which we were making payments on, and the 2004 wheelchair van, which was paid off by this time, and purchase a new, wheelchair accessible minivan that would serve as our family’s all-purpose vehicle for years to come.

My 2004 wheelchair van is now for sale. If you're in the market, you can read about it here.

To Kim's credit, it was mostly her idea to surrender the beloved Mazda 3. Her only stipulation was that she be able to purchase a scooter so that she could still have some fun driving a vehicle once in a while. Here's a picture of Kim on her Vespa.

On the Pursuit of Happiness

(Photo credit: Wikipedia)

 

I've read many Fourth of July blog posts this morning, and this is perhaps the best one, from Mano Singham.

On the pursuit of happiness

On this independence day holiday, I am repeating a post on what to me is one of the most intriguing phrases in the US Declaration of Independence. It is contained in the famous sentence:

We hold these truths to be self-evident, that all men are created equal, that they are endowed, by their Creator, with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness.

I have always found the inclusion of “the pursuit of happiness” as an inalienable right to be appealing. One does not expect to see such a quaint sentiment in a revolutionary political document, and its presence sheds an interesting and positive light on the minds and aspirations of the people who drafted it.

But while happiness is a laudable goal, the suggestion that we should actively pursue it may be misguided. Happiness is not something to be sought after. People who pursue happiness as a goal are unlikely to find it. Happiness is what happens when you are pursuing other worthwhile goals. The philosopher Robert Ingersoll also valued happiness but had a better sense about what it would take to achieve it, saying “Happiness is the only good. The place to be happy is here. The time to be happy is now. The way to be happy is to make others so.” [My italics]

Kurt Vonnegut in his last book A Man Without a Country (2005) suggests that the real problem is not that we are rarely happy but that we don’t realize when we are happy, and that we should get in the habit of noticing those moments and stop and savor them. He wrote:

I apologize to all of you who are the same age as my grandchildren. And many of you reading this are probably the same age as my grandchildren. They, like you, are being royally shafted and lied to by our Baby Boomer corporations and government.

Yes, this planet is in a terrible mess. But it has always been a mess. There have never been any “Good Old Days,” there have just been days. And as I say to my grandchildren, “Don’t look at me, I just got here.”

There are old poops who will say that you do not become a grown-up until you have somehow survived, as they have, some famous calamity — the Great Depression, the Second World War, Vietnam, whatever. Storytellers are responsible for this destructive, not to say suicidal, myth. Again and again in stories, after some terrible mess, the character is able to say at last, “Today I am a woman. Today I am a man. The end.”

When I got home from the Second World War, my Uncle Dan clapped me on the back, and he said, “You’re a man now.” So I killed him. Not really, but I certainly felt like doing it.

Dan, that was my bad uncle, who said a man can’t be a man unless he’d gone to war.

But I had a good uncle, my late Uncle Alex. He was my father’s kid brother, a childless graduate of Harvard who was an honest life-insurance salesman in Indianapolis. He was well-read and wise. And his principal complaint about other human beings was that they so seldom noticed it when they were happy. So when we were drinking lemonade under an apple tree in the summer, say, and talking lazily about this and that, almost buzzing like honeybees, Uncle Alex would suddenly interrupt the agreeable blather to exclaim, “If this isn’t nice, I don’t know what is.”

So I do the same now, and so do my kids and grandkids. And I urge you to please notice when you are happy, and exclaim or murmur or think at some point, “If this isn’t nice, I don’t know what is.”

This is really good advice that I try to follow because it does work. It makes you realize that you may be happier than you think you are.

Celebrities with MS- We Need More of Them

You may be aware of the recent announcement that Ozzy Osbourne’s son, Jack, has multiple sclerosis. Jack, if you're reading this, please accept my thanks for going public with your private health issue and accept my heartfelt condolences regarding your diagnosis. As you've undoubtedly been told already, MS is not a death sentence by any means, but your life will never be the same. You can take solace in the fact that you are now part of a community of approximately 400,000 Americans, and more than 2.5 million people worldwide who are similarly affected. At some point, after you have adjusted a bit to your new reality, please consider wielding your celebrity to support our collective cause. We can use all the help we can get.

But let's face it, the MS cause needs what Parkinson's disease already has – a Michael J Fox. And right now, we don't have one. Sure, we have several celebrities such as Montel Williams, Richard Cohen, Annette Funicello, Teri Garr, David "Squiggy” Lander, Anne Romney, Clay Walker, Marc Stecker, and Jeff Beal who are known to have MS, and who are making considerable efforts on our behalf. But what we lack is somebody with the stature and commitment of Michael J Fox.

Let's consider what he has done for Parkinson's.

His charity, The Michael J Fox Foundation for Parkinson's Research, has become the largest private funder of Parkinson's disease research in the world, investing almost $200 million to date. The foundation is still going strong, and may someday be a significant factor in finding the cure for Parkinson's. That's right. The efforts of a single advocate like Mr. Fox could positively impact the 5 million or so people who are living with Parkinson's today, and the many more who may contract this disease in the future.

Although I wouldn't wish this disease on my worst enemy, imagine if someone like Angelina Jolie, Brad Pitt, Beyoncé, Katy Perry, Justin Bieber, Ellen Degeneres, Lady Gaga, Leonardo DiCaprio, Julia Roberts, or George Clooney developed MS? It would be devastating for them and their loved ones, but just think of the good they might do for millions of people with MS.

Every time I hear a celebrity announcing that they have a disease, I'm jealous when that disease is not MS. I sincerely hope that somebody of this A-list stature, who is inclined toward activism, joins our little fraternity and injects $200 million or so into research.  Does this make me a bad person?

Before closing out this post, I will issue a personal challenge to Ozzy and Sharon Osbourne. You are at least as well-known as Michael J Fox. Are you going to let that vertically challenged Canadian raise more money for his disease than you do for yours?

Let’s cross our fingers for a big celebrity announcement in the near future…

Please forgive my callousness, but I feel entitled to at least the tongue-in-cheek variety of it.

A Look Back

I launched this blog nearly 3 years ago. I know most of you started reading here more recently, so I thought it would be a good idea to rerun my original, introductory blog post, which still rings true. Current commentary is in red text.

Let's Get This Party Started


My legs are pretty much shot. My left hand is rapidly losing its dexterity and strength, and my right hand is starting down that road. My arms are still somewhat strong, but are getting weaker all the time. I can’t participate in many of the recreational or social activities that I used to. I can’t perform many of the basic functions that a person needs to perform to get through the day. I can’t even work for a living. I take a bunch of prescription drugs, sometimes of the experimental variety, because there is no know cure or even effective treatment for Primary Progressive Multiple Sclerosis.

The above litany is not a complete list of my MS symptoms. I've got more, but I'll spare you the complete accounting. My point being- if I don't mention it, don't assume I'm not experiencing it.

Bad luck, huh? Life is unfair, right? It must suck to be confined to a wheelchair. You might think that this would be so, but for me it is largely not the case. I have good days and bad days, but no more so than the average 45 (48) year old man. I’m not happy that I have MS, but I am happy. I spend almost no time lamenting over what could have been, or regretting my misfortune. Because I enjoy my life as much as I ever did (that's pushing it, I must admit), despite its challenges, am I crazy, in denial, or am I on to something? I started this blog in part to explore those types of questions.

I believe that an individual's level of happiness is largely self determined. However, to be practical about it, we are also influenced by our own inherent personality traits and by our interactions with the world around us. Here are a few things that I have working in my favor- traits and experiences that just make it a little easier for me to live a contented life:

• Good internal wiring. I have a favorable genetic makeup for dealing with situations like this. Thanks Mom and Dad.
• I have an incredible support system. It starts with my wife, and includes other family, friends, and medical professionals. My support system also includes my online MS friends, almost none of whom I’ve actually met face to face. (This is even more true today than three years ago)
• I watched and learned as my mother endured similar challenges with incredible grace and courage. Her disability was due to a sudden accident when she was 35 years old and I was only 5. Her spinal cord injury was in her cervical spine. My primary lesion load (area of disease activity) is in my cervical spine, in almost the exact same location as my mother’s injury. The longer I battle this disease the more my symptoms resemble hers. I know. It’s freaky.
• I have some level of financial stability. I'm not wealthy, but I might not be so happy if I was cold or wet, or worried about where my next meal would come from.
• Although I'm often fatigued, I am not in much pain, and I rarely feel "sick".
• I have widely varied interests. When I can no longer enjoy one activity, there is another activity on my list that I can take up (i.e., blogging).
• I have the ability to enjoy sedentary pursuits. If this had happened to my hyperactive wife, for example, it would have been a significantly greater challenge.

I readily admit that I have a lot of things going for me that many disabled folks don’t have, evidenced by the list above. So I’m not here to say that I have a formula that every disabled person can follow to achieve true happiness. In fact I can't say with certainty that I'd still have this positive attitude under any circumstances. I'm just here to get the conversation going.

The reason I am blogging now, and never have blogged before now, is that as of May, 2009 I have lots of time on my hands and need something fun, interesting, and useful to help fill my day. After 8 years of getting up and going to work with MS, it finally got to the point where I could no longer do my job. If you have not read the About Me section on the right hand sidebar yet, please take a minute to do so.

Here are some desirable potential outcomes of this blogging adventure, in no particular order:

1. I will connect in a variety of ways with people who I don't currently know. (big time)
2. This blog will stimulate some interesting conversations on a variety of disability related topics. (indeed, it has)
3. This blog will have any sort of positive impact on some of the folks who visit it. (maybe one or two)
4. I will leave a legacy of writing that will outlive me, so that my descendants will understand what life was like for their disabled ancestor. (maybe too much writing)
5. The process of maintaining the blog will be in some way therapeutic for me. (no doubt about it)
6. I will come to understand myself better. (yup)
7. Those who know and/or love me will come to understand me better. (since I'm kind of a quiet introvert, this has no doubt been the case)
8. I will advocate for the disabled community: raise awareness, articulate our plight, help facilitate change (I don’t know how articulate I’ve been)
9. Some media giant will buy my blog and I will get rich. Ha, that is rich. (Still waiting)

Here is one undesirable potential outcome of this blogging adventure:

1. In the process of organizing, acknowledging, and posting my thoughts here, I will come to my senses and realize I’m completely screwed, and change the name of this blog from “Enjoying the Ride” to “Life Sucks- Why Bother?”. (Although my introspection has not sent me off the deep end, I must admit that some of the pieces that I've written have provided a dose of reality)

Let’s just get this party started and see where it takes us. Thanks for visiting. My hope is that this blog will be more of a conversation than a presentation, so please feel free to use the "comments" option at the bottom of each posting to give feedback. Also, please feel free to share the http://www.enjoyingtheride.com/ link with anyone who you think might be interested.

It’s more than 200 posts later, and I'm still blogging, although sometimes I get lazy and just re-run old shit

It's NOT the Economy, Stupid

(Photo credit: Wikipedia)

Of course, the phrase goes, "It's the economy, stupid," regarding what really matters in a presidential election. In the months leading up to the vote we are subjected to endless debates about social issues, about the size of government, about all sorts of philosophical differences between the Republican and Democratic candidates. Yet, in the end, none of that matters. If the economy is headed in a positive direction, the incumbent, or the representative of the incumbent party, wins. If the economy is in decline, the challenger wins.

Above all else, we want the government to provide us with economic prosperity. Yet, that’s something that it is incapable of providing. And since our president is but one cog (although a significant one) in the vast American government apparatus, which is but one cog in the multifaceted American economy, which is but one cog in the complex global economy (about 25%), we are selecting our presidents based on a fallacy.

Wake up America! Think a little bit before you vote. The candidate on the favorable side of the current economic situation, usually there by pure luck, will spend an inordinate amount of time asking the question, "Are you better off today than you were four years ago." Don't bite!

It's not like the economy is a ship, and the president is its captain. It's not even like the economy is a corporation, and the president is its CEO. It's more like the economy is a herd of cats, and the president is their shepherd.

To clarify, I will admit that certain government policies are probably better for our economy in the long term than other policies. However, to give sitting presidents, or their political party, the credit or blame for the economy as it exists at the end of a 4 or even 8 year term is an absurd oversimplification.

Please don't confuse this post for a thinly veiled defense of President Obama, given the apparently stalled economic recovery. I also felt this way with John McCain four years ago. He had a lot of good things to say, but in the end it didn't matter. The incumbent was a Republican, and McCain was a Republican, and the economy was in a tailspin. End of story.

I encourage you to become a sophisticated voter, if you aren't already. Sure, you should consider the economic philosophies of the candidates, but keep in mind that the president is more likely to influence education policy or the makeup of the Supreme Court, for example, than he or she is to affect your wallet in the next four years. It's nice to think otherwise, because it's always comforting to imagine that someone is in charge, but that's just an illusion.

Labels (not the kind on soup cans)

Labels- short phrases that summarize the characteristics of a person or group- get a bad rap. I'm here to defend them.

"Don't put a label on me" is a common appeal. I get that. Yet, wouldn't communication become excessively cumbersome if we didn't employ these linguistic shortcuts? To bastardize a phrase used by the National Rifle Association- “Labels don't stereotype people. People stereotype people.”

We need labels; we just need to use them responsibly.

Some labels are spot on. Here’s an example from my life. Lots of people with MS are frustrated by the various labels such as Relapsing Remitting MS (RRMS), Primary Progressive MS (PPMS), and Secondary Progressive MS (SPMS). Some patients, like my friend the Wheelchair Kamikaze, even wonder if the MS label applies to them at all. Many people have several characteristics of one or more category, and therefore don't have a good answer to the question, "What type of MS do you have?" This can be an important distinction, as it affects treatment options and insurance coverage. But in my case, I couldn't be a more classic PPMS than I am. I am male. My lesion load is primarily in my cervical spine. My disease initially presented with weakness in my legs. I've never experienced anything resembling a relapse or a remission. There's no question in my mind that I have MS, and that I have PPMS. Good label.

In contrast, it's almost impossible to label my politics. I'm not a registered Democrat or Republican. I'm a fiscal conservative, like a Republican. But I am a social liberal, like a Democrat. I believe in broad individual rights, like a Libertarian. You just can't stick an accurate label on me.

In the wheelchair world, there exists a set of common labels. Many people are in wheelchairs because of spinal cord injuries. They are referred to either as paraplegics, with full or partial paralysis in their legs, or quadriplegics, with full or partial paralysis in all four limbs.

I didn't suffer a spinal cord injury, but I have a disease that mimics one. Therefore, I think it's appropriate to label me as either a paraplegic or quadriplegic. For the first six or seven years of my disease, I think I was clearly a paraplegic, at worse. Only my legs were affected. Somewhere along the line, though, I started to develop disability in my hands and arms. I don't think it was appropriate to classify myself as a quadriplegic the first time I had difficulty shuffling a deck of cards. However, I feel like it's appropriate now.

But, do I legitimately qualify for the quadriplegic label, which is usually reserved for people with spinal cord injuries? I think so. Therefore, if the spinal cord injury population has no objection, I'd like to use that label to economize on the number of words I have to employ in order to describe the extent of my disability.

Having made this point, however, I think my response to the question "Why are you in a wheelchair?" will remain "Because I have MS." But if I am ever asked the question "Are you a paraplegic or a quadriplegic?" I think I'll respond. “I’m a quad, thanks for asking.”

The 10 Best Things About MS

As with my previous post, The 10 Worst Things About MS, I’m drawing on my personal experiences here. This disease attacks everybody in a different way, and therefore each MS journey is unique.

I'm out of the Corporate Rat Race
I had a decent career in terms of income and position, but on the whole I found the entire venture to be unfulfilling. Since I stopped working due to MS, I’ve run a lot of “what should I have been” career scenarios in my head. If I had a do-over, I would not again choose the corporate life and all of its associated bullshit. I missed my calling, whatever it was.

Chicks Dig Me
The overused phrase "nothing is sexier than a man in a wheelchair" definitely applies to me. Since I started using a wheelchair, it's as if I've transformed from a solid 6 to a 9+. Kim remains unconvinced of my newfound sexual magnetism. She thinks it's all in my head.

I offer up the photograph on the right, however, as irrefutable evidence of the effect I now have on women. Last year I was in balance mode in my iBot wheelchair, zipping along a casino floor in Las Vegas. Kim was randomly snapping some pictures. Notice the lovely lady on the right, and where her eyes are directed (click on photo to enlarge). I was clearly being checked out. If I had made eye contact with her, it probably would've sealed the deal. But given my fidelity, and the close proximity of my wife, I didn't even acknowledge her as she passed by.

Another broken heart in my wake.


I Don't Feel Rushed Anymore

You know how chaotic life can be when you're a parent, spouse, friend, relative, employee, boss, citizen, and more, all at once. Because I no longer work, 40 to 60 hours a week of craziness has been subtracted from the equation. What a calming effect that has had my life. It's not good that I was forced to retire early, but retirement is good medicine.

I've Met so Many Wonderful People That I Otherwise Wouldn't Have
I was never the kind of person to volunteer at an old folks home or a hospital. I was too busy. Although I had sympathy for disabled people, I can't say that I knew very many (except my mother).

Since I've become a card-carrying member of the disabled community, I have met so many interesting, compassionate, and brave people that I would never have otherwise known. My life is richer for this, and that's why it makes my list of the 10 best things about having MS.



Accessible Tickets at Sporting Events
Boston area professional sports fans are rabid. Both the Patriots and the Red Sox sell out their entire season on the first day. So, if you're not lucky enough to score tickets on that day, you're relegated to buying them on the secondary market, which can often be at a huge mark up- except for wheelchair accessible tickets. I can get those from the ticket office for almost any game, often on short notice, and always at face value.

I've Been Able to Take Stock of What’s Truly Important
It's so cliché for people who have experienced intense trauma to say that they now appreciate life more, but I must tell you, it's true. Before I became disabled, I would attach such importance to items that were relatively trivial. Now that I've gained this wisdom, via the school of hard knocks, I'm a more well-rounded person for it (mentally, if not physically).

I Never Want for a Chair
Think of all the times when you are in need of a chair. Maybe you were at a busy restaurant or bar, and there was no place to sit. Maybe you were walking for a long while and your legs were tired, but the cold wet ground was the only place to rest. I never have this problem. Wherever I go, my chair is sure to follow.

I've Become a More Empathetic Person
I've always been a caring person, but, because I am a fiscal conservative, I used to be a little less empathetic toward the disadvantaged individuals in our society. For example, I felt that the only problem with government assistance was that the system was being taken advantage of by scammers, rather than the fact that many programs were not meeting the needs of the public. I'm still a fiscal conservative, but now I have a renewed appreciation for the struggles that some people endure, through no fault of their own. I know that we can't solve the world’s problems by taxing and spending, but we need to be very thoughtful and compassionate when we make these critical decisions.

I'm Able to Manage This Blog
In high school I was considered a pretty decent writer. In college I took one composition course, and didn't click with the instructor. Then, for the next 23 years all I did was business writing. I always wanted to reconnect with my creative and contemplative self, and because of the time afforded me by my disability I was able to do just that. It has been rewarding in terms of scratching my itch to write, connecting with disabled and healthy people alike, and making a difference in the world.

Handicapped Parking, of Course
I know all those empty handicapped spaces in the front row frustrate you healthy people, but preferred parking is the biggest reason I chose to be disabled in the first place.

The 10 Worst Things About MS

(Photo credit: Wikipedia)

I’m referring to my personal situation. This disease attacks everybody in a different way, and therefore each person's experience with MS is unique.

High Costs
This disease is damned expensive. Last year I had $28,000 worth of unreimbursed medical expenses. This was in addition to even more medical expenses that were covered by insurance. Sure, it's a partial tax deduction, but I'd rather not have the expenses in the first place (a partial tax deduction does not make up for the expense, not by a long shot).

I Can't Do All the Fun Things I Used to Do
This is perhaps the most obvious drawback to having MS. I can no longer: walk, drive, swim, run, stand, lift, grab, etc. I have difficulty traveling and socializing, but I still do some of both.

Poor Health Due to Lack of Exercise
Everywhere I turn there is another news story about how important exercise is for overall health. It’s the magic pill, the golden egg, the cat’s meow. Every time I come across one of these articles, I am reminded that it’s not only the devil I know that may be my downfall, but also some affliction associated with my MS-induced, sedentary lifestyle. Since I can't do any meaningful exercise, it seems likely that I'm destined for any number of potential diseases like diabetes, cancer, heart disease, etc.

Going to the Bathroom
Even at home it’s a lot of work, and it takes a lot of time. But, when I'm out in public it can be very difficult to find an accessible bathroom at all. As a result, there are some places that I simply can't go, or places where I have to strategically restrict my intake of fluids, which is generally unhealthy but often the only practical solution.

Feeling Isolated
When I stopped working and later stopped driving, it was inevitable that I would become somewhat isolated. I've made lots of internet friends, but there's still that feeling of seclusion when I sit home for long periods without direct human contact. I'm looking forward to enjoying my new neighborhood this summer. That should help.

Uncertainty about the Future
If you feel confident about your future, you're likely deluding yourself, and I say this in the most supportive way. Each and every one of us could experience a life altering or life ending event at any moment, and we should live accordingly. It's just that for people like me, the probability of negative future outcomes is much higher than average.

For example, after our hugely successful vacation in the Bahamas earlier this year, the whole gang started talking about repeating the trip again next year. But I just can't plan that far ahead. I don't know what my life is going to look like in 6 or 12 months, so I am hesitant to make commitments more than a few months out.

Everyone plans for retirement. I can't even plan a year ahead, let alone 10 or 20 years. Interestingly, because of my disability, I have penalty-free access to my IRA retirement accounts, as if I've already reached retirement age. Should I spend some of that money now, while I can enjoy it, or should I save it for this uncertain future of mine (of ours)?

I Feel I'm Holding People Back
Sure, I'm the one who’s disabled, but if you choose to spend time with me then your life is at least temporarily constrained by MS as well. Clearly, people go out of their way to downplay this sentiment. Nevertheless, the perception that I am holding people back does wear on me.

I Can't Work Anymore
I miss all the positive aspects of employment, including income; sense of accomplishment; sense of being engaged in worthy endeavors; and spending time with customers, vendors, and coworkers who were some of the nicest people I knew.

I Look Scary
I'm so used to being in a wheelchair now that I often don't give it a second thought. Then, I'll pass by a mirror in a store, for example, and I'll think something like, "Damn, you look really, really disabled in that wheelchair."

I feel like wearing a sign that says, "It's okay. I'm okay." I think if people knew that I'm leading a contented life then they would be more comfortable when they encounter me.

I usually have Kim take the headrest off my new wheelchair when we’re going out in public. I just need it for the full recline mode, which I only make use of at home. Not having the headrest attached makes a huge difference in how scary I appear.

I also attempt to counter this perception problem by being outwardly engaging and friendly, which I wrote about here.

I Can't Go Places

In the history of mankind, wheelchair accessibility has never been better than it is now, but it still sucks, and it always will suck. There are just so many places I can’t go.

The Treatments
If the disease doesn't get you, the treatments often will. Many MS treatments have serious side effects, even death. They are often administered as chemotherapy, daily injections, or monthly infusions. Only recently have any oral medications been approved, and of course they don't work for my type of MS. Right now I'm getting chemotherapy drugs injected into my spine every eight weeks. That's a lot of fun.

I'm sure I've forgotten to mention some obvious drawbacks. Maybe that's due to my cognitive abilities having been diminished by MS?

In the interest of equal time, my next post will be: The 10 Best Things About Having MS (seriously).

Did any of you notice that there are 11 items in my "10 Worst Things" list? I couldn't pick one to eliminate.