(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

(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.

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.

(Photo credit: SalFalko)

A few weeks ago I received this comment/question at one of my older blog posts. Rather than respond there, where very few people would see it, I thought I would respond here.

I was diagnosed with PPMS in NOV 2011. I am a public high school teacher and use a scooter all day. I use a wheelchair around town. Some days I can barely type enough to sign in to my computer to take attendance. Unfortunately, I am the only fully employed person in the house. I don’t feel like I can even consider disability because of the insurance issues. My husband takes me to work and the kids to school each day, goes to his part time job, then picks us all up and takes care of our evenings. Any suggestions for making our situation better?

Seymour

Dear Seymour,

I’m sorry to hear about your difficulties. Unfortunately, your situation is not all that uncommon for people with MS, and highlights the fact that the medical model in the United States is seriously flawed. I’m not sure if Obama Care is the optimum solution, but I know that we need to do something to decouple health care from employment. Every other developed nation in the world already has.

I assume you live in the United States, and I assume that you would receive disability income through Social Security or your school, or both, if you were to go on permanent disability. Now is the time for you to research and completely understand those potential benefits.

I understand that your full-time employment is the only current source of medical insurance for you, your husband, and your children. If you need to go on total disability at some point, due to progression of your MS, there are several issues of which you are already aware. First, how will you, your husband, and your children obtain health insurance after you stop working?

Depending on which state you live in, how much disability income you would receive, and how much income your husband would earn from his part-time work, you may qualify for Medicaid health insurance benefits or other similar state programs. However, many states are considering cutbacks in those plans. Again, now is the time to research and completely understand your potential benefits.

Your employer may be required to offer you COBRA insurance coverage if you go on disability, but those premiums can be prohibitively expensive given what will be a reduced income for you. You should also speak with your local teachers’ union or your state’s teachers’ association to find out what disability and medical coverage benefits they may offer.

If you have paid Social Security taxes, which many teachers haven’t, and qualify for Social Security Disability, you will be eligible for federal Medicare two years after you begin receiving Social Security Disability benefits, which is six months after you stop working. So in the short-term, your medical insurance situation would be no better than that of the rest of your family, but in the long term you would receive Medicare benefits for the rest of your life.

If you have very limited income and resources, and are disabled, no matter whether or not you have contributed to Social Security you may also qualify for Supplemental Security Income, which would provide you with income and Medicare benefits immediately. But neither Social Security program will provide medical benefits for your family.

I know of several families that are in your situation – the person with MS is the only one with medical insurance benefits for the entire family. Of course, the most practical solution for you is to have your husband find employment which includes family medical insurance benefits. I know, however, that in the current economic climate this is much easier said than done. But I suggest that you and your husband pour as much energy as possible into making it happen, if you haven’t already. Be creative. Broaden his job search into career areas that he might not have otherwise considered. If he can secure this type of employment, that will free you up to stop working when and if your health dictates it, rather than holding on longer than you should.

The other approach is for you to find ways keep working as long as possible. Don’t be shy about requesting reasonable accommodations from your employer. The National Multiple Sclerosis Association provides an excellent resource for people in your situation:

http://www.nationalmssociety.org/living-with-multiple-sclerosis/employment/index.aspx

I wish I had more helpful advice to give you. Good luck! Please keep me updated.
Mitch

Readers, what other advice would you give Seymour? What have I forgotten or misstated?

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.

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.

(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.

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.

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

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.”