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.

(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.

(Photo credit: West Point – The U.S. Military Academy)

Today I took an oath. Afterward, I tried to recall other times in my life when I might have been asked to do such a thing.

Perhaps I took an oath when I was in Cub Scouts or Boy Scouts. I remember the motto was “Be Prepared,” but that’s not really an oath. I didn’t take any oaths for our High School sports teams. Maybe I took an oath for the National Honor Society. Who knows?

I didn’t take an oath when I started college. I must have taken an oath when I became a fraternity brother, but I was almost certainly drunk at the time. Of course I said vows at my wedding. Is that the same as an oath? I think so.

I didn’t swear an oath at any of my jobs, although I certainly swore a lot about unreasonable customers, inept suppliers, and apathetic coworkers.

I’ve never been a witness in a trial. I’ve never been called upon for jury duty. So there are no courthouse oaths in my past. Although doctors swear the Hippocratic Oath, I was never asked to take an oath when I became a professional engineer. I only had to fill out an application and pass an exam, and then I received my license in the mail.

I didn’t take an oath when my kids were born or when I received my Master’s degree. I didn’t take an oath when I was executor for my father’s estate, or when I got MS.

Oaths don’t seem to be a significant part of our society anymore. For most of the important events in my life, oaths were nowhere to be found. But today I was asked to take an oath, and I gladly did. Allow me to explain.

We’ve always lived in residential, suburban neighborhoods. But last fall we moved to an urban area for the first time. As such, we have all sorts of complicated issues and lots of people who care deeply about said issues. After meeting some of my new neighbors last fall, I felt compelled to start attending the neighborhood association meetings.

In doing so, I became aware of a massive construction project that is going to start next week in our neighborhood. Most of the underground utilities will be replaced- gas, water, sewer, storm water drainage, etc. We’re getting new sidewalks, lamp posts, parking spaces, landscaping, and street tops. The neighborhood is going to be a complete mess all summer, but once they are done it will be beautiful, and more wheelchair accessible!

In one of these meetings, I learned of a storm water treatment issue, related to the construction project, which is of concern to me. In my last job I was a manager for a storm water treatment company, so I thought I might be able to advocate for my neighborhood on this matter.

I attended a City Council workshop and addressed the Council about my concerns. Nothing has yet changed, but I haven’t given up. As an unexpected result of my activism, the councilor from my district recruited me to fill an open position on the city’s Conservation Commission. That seemed like a nice way for me to scratch my civic itch, a means to contribute to my community if only in a small way.

After speaking with the chair of the Conservation Commission and attending one of their meetings, I became comfortable that the position would be neither highly stressful nor particularly time consuming. My current obligations, such as taking the best care of myself that I can while being a good husband, father, and blogger are turning out to be about as much as I can handle.

So my name was put in front of the City Council, and I was appointed to the South Portland Conservation Commission. The last step in this process was that I had to go City Hall today (which is about 500 yards from my house) and take an oath, essentially promising to do my best as a member of the commission.

I’m so pleased with my new status that I would like everyone to address me henceforth as Commissioner Sturgeon, or “The Commish” if the setting is less formal. I’m a very important man now. I’ve taken an oath.

As I’ve mentioned before, my mother was a wheelchair user from the time I was six years old, so I knew about handicapped parking challenges from an early age. I made it a point to keep an eye out for people who misused these spaces.

As I matured into a young adult and gained more self-confidence, I would sometimes confront people who used a handicapped space but looked healthy, even if they had a permit. I was wrong to do that.

When I was diagnosed with MS I became aware that many people have invisible disabilities. Maybe they walk perfectly well for the first 100 yards, then their legs tire. Maybe after a short time they need to stop and let their heart or lungs catch up. Maybe they deserve their handicapped parking space, even if I’m not aware of what their disability is. Frankly, it’s none of my damn business.

Yet, this remains a bitter pill to swallow, because I still believe that 90% of the healthy-looking people I see using handicapped parking spaces, permit or none, are actually cheats. Because I don’t have enough information to accuse any particular person, however, I must give everyone the benefit of the doubt.

Of course, if someone in a handicapped space doesn’t have a permit at all, then they are fair game. I recently learned of an iPhone app where you can report cheaters. Here’s a similar app that also works on Android and Blackberry phones.

But cheaters aren’t the only problem in the handicapped parking world. Engineers and drafters routinely screw things up too. When they design parking lots and streets, they don’t always follow regulations, and even if they do, they don’t always use common sense.

One design problem that I often encounter is that the access strip, the yellow striped area where I unload from my wheelchair van, is not wide enough. Skinny access strips are just a token attempt at making the handicapped parking space truly accessible.

There is a related misuse of these access strips. Often, when all the handicapped spaces are taken, some idiot will decide that a nice wide access strip beside my van is actually an extra parking space for them. The first few times I encountered situations like this, I would scramble for a scrap of paper and a pen so I could leave a note explaining the way the world works to these morons.

So I decided to just draft a form letter, which I keep about 10 copies of in my glove box. In this letter, I try to strike a balance between explaining the infraction to otherwise well-intentioned dimwits (or possibly just old folks who don’t think clearly anymore and should no longer be driving), versus ripping a new one for people who understood what they were doing but just didn’t care. Here’s what I came up with:

Van handicapped spaces are laid out so that a person like me, who uses a wheelchair van, can load and unload beside the van. By illegally parking in the space reserved for loading and unloading, you made it impossible for me to get back into my van. These access strips are denoted by striped lines on the pavement, right under your car. I guess you also didn’t notice the big sticker on my side door asking you not to park within 8 feet of me.

Maybe my son or wife was with me today, in which case they had to get into the van and pull it back a few feet before opening the door and extending the ramp for me. However, I do drive with hand controls (I don’t anymore, but that’s none of their business), and maybe this time I was by myself. If so, I had to ask a perfect stranger to back the van out a few feet for me so that I could open the side door, extend the ramp, and drive into my van. If you are disabled yourself then you know that there are enough challenges associated with being handicapped already. We don’t need to be making life more difficult for one another. If you’re not disabled, then you’ll just have to try to imagine my frustration with you.

Please don’t park illegally in this manner again.

Sincerely,

Mitch

Ever since I first ventured out in public with a wooden cane a few years ago, I’ve been on a mission.

Until I became one, I hadn’t much noticed disabled people. Shortly after my diagnosis, however, I observed that the majority of disabled people who I encountered in public appeared to be miserable, and justifiably so. By reporting this observation, am I being unduly harsh or unfair to the disabled community? No. I think I’m just being honest.

If we accept my premise that most disabled people exhibit a gloomy disposition in public, then the question becomes how does this fact serve us? My answer- not well at all. When we appear sullen and withdrawn then it’s easy for the healthy population to ignore us. They look right through us. People’s natural tendency is to avoid unpleasantness. Can we, should we, make ourselves less unpleasant for them?

I’m not suggesting that this is fair burden for us to carry, but I believe it is an appropriate one. We look so different from the healthy population that all too often they simply don’t identify with us. Sure, they pity us, but that’s not what we want.

We want the healthy people that we interact with in public to treat us as if we are not disabled. Or, to the extent that they do perceive our disability and reflect upon it, we want them to think, “Other than his disability, this guy is just like me,” or “It’s only by good fortune that I’m not in his shoes.” When people identify with us, and truly empathize with us, then we have their attention and they can be helpful.

We want the public to help. We want them to demand action from their government to further our causes. We want them to donate to charities that seek to cure what ails us. We want them to make buildings and parks and homes more accessible. We want the entrepreneurs to see the mutual benefits associated with making our lives better. We want Medicare to approve wheelchairs like my iBot that actually integrate us into our social and physical environments, not just allow us to move from bedroom to bathroom to kitchen. We don’t want their pity. We want their respect and their help.

Toward this end, I’ve made it my personal mission to not appear miserable in public, even if I’m having a bad day. I know I’m not always successful in this endeavor, but I usually am. And I’m not a gregarious person by nature, but rather an introvert. I can be so caught up in my own little world that I’ll not even notice what others are doing around me. So, becoming friendly and outgoing in public is work for me. Nevertheless, when I am out in the community I make an extra effort to look as alert as I can, smile easily, and engage people in lively conversation whenever appropriate.

This approach is not completely altruistic though. It’s not only about the mission. I behave this way, in part, for selfish reasons. Just as even a forced smile can improve your mood, compelling yourself to engage with others is a bootstrapping exercise that can potentially brighten your day. But it doesn’t matter what my motivation is. My positive behavior can serve multiple purposes.

I’m aware that a few of my disabled friends may be irritated by this post. Isn’t it enough that we suffer, Mitch? Must we also put in the extra effort to conceal our pain when we’re in public, to essentially be disingenuous? Of course not. I know that it is unfair to expect all disabled people to be friendly and engaging in public. Fatigue, depression, and other physical and mental challenges are sometimes overwhelming. That’s OK; there are plenty of us who are capable, at least some of the time. And to be clear, I am NOT saying that if you can’t muster a happy face then you shouldn’t go out in public at all.

If you are able to, and you are so inclined, then please join me in my mission. All that you need to do is make an extra effort to be engaging when you are in public. While you are out there meeting people, think of yourself as an ambassador for the disabled community. We can change perceptions one interaction at a time.

I didn’t dream up this mission myself. I inherited the idea from my mother, who, as a quadriplegic, fought the good fight for the last 39 years of her life. Her weapons: grace, dignity, and a warm smile.

Do you ever fantasize about the perfect day? I’m not talking about winning the lottery, lying on a tropical beach sipping Coronas, or watching Yankee Stadium fall into a big sinkhole. I’m talking about the kind of day where everything in your mundane little life simply goes right for once, and nothing goes wrong.

Below is my list of the routine events that, if they all came to be, would constitute my perfect day. At the end of each event is the precise, documented success rate that I currently enjoy for that item.

• I successfully get myself up in bed (usually between 3:00 and 4:00 AM) without Kim’s assistance, pee, and lie back down in bed without Kim’s assistance, thereby not interrupting her sleep. 20% success rate
• After the previous, considerable exertion I’m able to fall back asleep before Kim’s alarm goes off at 6 AM. 50% success
• In the morning, I’m able to get out of bed and get into my wheelchair without Kim’s assistance. 50% success
• It’s not a shower day (shower days are more work). 50% success
• When I let Phoebe outdoors for the first time in the morning she doesn’t bark incessantly and wake up the whole neighborhood. 75% success
• I have some interesting e-mail awaiting me when I open up my computer, instead of just a bunch of crap. 25% success
• As I’m listening to the Today show in the background, there’s not some story that pisses me off because of deficient reporting or clueless people (I keep watching, though, because there are often segments that inform me, entertain me, or otherwise make me happy). 10% success
• I do something that significantly improves another person’s life. 25% success
• Our cat doesn’t walk on a countertop, sun herself on the kitchen table, or puke somewhere (Kim likes the cat). 50% success
• At no point during the day do I become frustrated because I couldn’t reach something important, or I dropped something important, or I had to forever stop doing something that I’ve always been able to do before. 8% success
• It’s a nice enough day that I get to leave the house and go somewhere in the neighborhood on my own. 14% success in the winter, 95% in the summer
• I do something truly productive during the day (like publishing a blog post or digitizing old photographs). 50% success
• I remember to tell Kim that I love her (I like to make it special, not routine…) 25% success
• I learn something, maybe in a book, an online article, a blog post, or a video, that genuinely helps me see the world more clearly. 25% success
• When Kim gets home we do something interesting, either inside the house or outside the house, instead of sitting in front of the TV and/or our computers all night. 50% success
• A friend comes to visit. 10% success
• Something good happens during the day to make me smile or laugh. 99% success

I learned in statistics class that the probability of a group of events occurring simultaneously is the product of their individual probabilities. So, in order for me to calculate the odds of experiencing the perfect day, as described above, I just need to multiply all of the success rates and see what I get.

So, what do you think my odds are of having all of the above items occur in a single day? Is it one in a hundred, one in a million? Nope. My odds of having a perfect day are one in a billion!

Fortunately, it’s not important that I have any perfect days. It’s only important that I have some good days, which I do.

(Photo credit: Wikipedia)

I’ve been asked how it is that I maintain my identity – how it is I keep MS from defining who I am.

To a large extent, I don’t.

Earlier in my disease progression, MS was a minor player in my life. It was an afterthought, an asterisk, a postscript. It rendered my identity a bit more interesting than it otherwise would’ve been, but that was all.

As the disease began to have a profound effect on my daily activities such as walking and using my hands, it became more and more difficult to keep MS from shaping my personal identity. So I didn’t fight it. I embraced it.

I am a husband with MS, a friend with MS, a brother and a father with MS. I am a blogger with MS. Note that MS doesn’t supplant my identity; it enriches it. Don’t get me wrong. I’m not saying that having MS is a good thing. It absolutely sucks. But embracing the fact that I have MS doesn’t.

Granted, for some people with MS it may be important to keep the disease out of your public identity, often for reasons having to do with career preservation. I get that. The only advice I have for you, if you need any, is this. Be passionate about what you do. But when MS needs a chunk of your time- whether for doctors’ appointments or naps- give it what it demands, then return to your primary interests without apology or guilt. I did that for quite a few years, and I think I was largely successful.

I’m not only a guy with MS. For brief periods of time I’m able to put the disease out of my mind. The best distractions are television and movies, books, conversations, or any task requiring concentration (even though my ability to concentrate is diminished). Sleep? I’d say my dreams are a mishmash of walking Mitch and wheelchair Mitch, often switching back and forth indiscriminately.

I’d like to think that people I’m interacting with, at least for brief periods of time, can also forget about the disease. But to imagine that it’s ever far removed from who I am would be an act of denial.

Please consider the notion that accepting these changes to your identity does not represent failure or defeat. It may simply be the best way to deal with a new reality.

I’m now that guy with MS, and being identified as such is not a bad thing. It’s just a thing.

Keep in mind that it’s not only me. It’s Kim too. We’re both suffering from the effects of MS.

Sure, I’m the one who has the disease, the one whose central nervous system is dissolving day by day. I’m the one who can’t work, who sits in a wheelchair, and who grows more dependent on others each day. But I’m not the only one suffering. My wife has decided to come along for the ride, and that makes me question her sanity just a little bit.

Make no mistake about it; this is a choice. Many marriages break up in the wake of an MS diagnosis. I prefer to think that MS either accelerates the inevitable, or becomes the last straw, in marriages that are already flawed. In strong marriages like ours, it seems inconceivable (but yet I know it isn’t) that a tragic medical diagnosis would drive a wedge between committed partners. My point is that Kim remains with me by choice, and for that I am grateful. I’m also in this marriage by choice. But let’s be realistic. If I wasn’t happy I wouldn’t exactly have other options. I don’t feel trapped at all, but I’m sure that others in my situation or in Kim’s situation do, and that is a sad thought.

We shouldn’t assume that all MS breakups are about heartless, healthy spouses leaving helpless, sick ones. Those of us with MS need to work hard at being easy to care for. Maybe I’ll ask Kim to author a future post about just what easy entails. I’m guessing I would get a passing grade in that regard, but not an A+, perhaps a B-.

Here are a few practical examples of how Kim’s life has been affected by MS:

She no longer spends even a single night away from home. I need help getting into bed. I need help in the middle of the night. I need help getting out of bed. We should formulate a backup plan in case she becomes suddenly ill, unexpectedly injured, or just temporarily misplaced.

Kim is on her own when it comes to maintaining our household. All the chores, all the seasonal activities such as raking leaves and shoveling snow, all the minor repairs, everything that needs to be done to keep our house in good order, is accomplished by her. She is so damned frugal (cheap) that she won’t hire anyone to help. She is so damned conscientious (anal) that she won’t do anything half-assed, even if she is exhausted.

In some marriages the opportunity exists for at least one spouse to consider risky, more fulfilling, or even more altruistic career paths at some point. Also, other couples enjoy at least the fantasy of one day picking up and moving to another part of the country or another part of the world and starting over. But none of those options are available to us anymore. We rely so much on Kim’s income and benefits that she is essentially restricted to her current employment situation, or only the most circumspect growth opportunities therein. It’s a good thing that she loves her job.

And here are a few, more intangible examples of how Kim’s life has been affected:

She must, on occasion, wonder what my continued progression is going to mean for her. Is she going to be able to handle it? What will be expected of her? What if she falls short of what is required?

I may appear to be well-adjusted and content, and to a large extent I am. My physical needs are being attended to. But Kim must sometimes wonder if I’m not hiding something from her due to pride, shame, or concerns for her happiness (who, me?).

None of us knows what lies ahead in our lives- lightning strikes and cancer diagnoses come to mind- but for the spouse of somebody with a chronic disease like MS, this level of uncertainty is amplified, and so is the level of associated stress.

Disability introduces some interpersonal communications challenges. I’m guessing that Kim has conversations with herself like these:

• Should I offer to help with what he is struggling to do right now, or should I leave him alone so that he can accomplish it himself? Is this a time to intervene or a time to observe from a distance?
• If I dare to go out and have fun without him, should I feel guilty for leaving him behind? Is he really okay at home with Phoebe tonight?
• Mitch is capable of independently accomplishing what he’s asking me to do for him, although it would certainly be easier for me. Is this one of those times when I should push back, or would life just be simpler if I do what he asks? (From my perspective the identical situation might be viewed like this. I know I can probably accomplish this task by myself, but it will take a lot of energy and may cause significant frustration. Should I ask her for help or should I just suck it up and do it myself?)

So, the next time you see a couple where one partner is handicapped, I suggest you reserve as much or even more admiration and compassion for the caregiver as you do for the disabled person. One of them may be stuck inside a bottle, unable to escape. But the other one is peering into that bottle through clouded glass, trying to figure out what the heck is going on in there, and wishing she could slip her hand inside to help.

And how do I feel about this situation? I am so fortunate to have a life partner with as much empathy, energy, patience, courage, and love as Kim. You might think that having my wife become my caregiver would drain the romance out of our marriage, but I prefer to look at it this way. I am head over heels in love with my sexy caregiver, and we are embroiled in a steamy love affair. How cool is that?

(Photo credit: epSos.de)

“No problem can be solved from the same consciousness that created it. We must learn to see the world anew.” Albert Einstein

Governments, political bureaucracies that they are, simply are incapable of providing most goods and services effectively. That’s why capitalism has been relatively successful and communism hasn’t. I cringe whenever it is suggested that more government involvement is needed in order to solve a problem.

I’m a free-market, small government, minimal regulation guy, but only to the extent that said free-market serves the needs of the populace. The pharmaceutical industry isn’t doing that, not by a long shot.

The failure of the pharmaceutical industry to meet our needs is not due to evil people or evil corporations. It would be so much simpler if it was. It’s because of a broken system. The story goes that by maximizing profits and shareholder value pharmaceutical companies provide the most effective, lowest cost drugs, and make them available to the widest number of people. This model works for industries like computer hardware and athletic socks. Does it work for medicines? No.

I’ve railed here before about how our system of developing, testing, pricing, and delivering drugs is an utter failure. But my friend, Wheelchair Kamikaze, says is so much more eloquently. Please give his post a read, but then come back here for more!

Thomas Pogge, of Yale University, recently gave a Ted talk about this dysfunctional model. He does a credible job of describing the failings of the current system, and articulates the goals of a new one. He points out that most drugs are relatively inexpensive to manufacture. The significant income that the pharmaceutical companies generate from their patent protected drugs does make the shareholders wealthy, but it is also wasted on marketing, lobbying, litigation, and other non-value added activities.

Pogge suggests that if we were to redesign the pharmaceutical industry from scratch, we would have the following objectives:

– Patients would have access to important, existing medicines regardless of their country and income.
– Research and development investment would target the innovations that promise the largest health gains, not necessarily the greatest corporate profits.
– The entire system would be cost-effective so that money spent on medicines would achieve as much as possible for human health, as opposed to squandering money on non-value added activities.

The current system does a poor job regarding all three of these objectives. Pogge makes the point that it is unrealistic for us to simply pressure pharmaceutical companies to adopt more altruistic business strategies. They are operating in a free-market system, and have no choice but to meet their fiduciary duty to their stockholders within the constraints of the law. Otherwise they would go bankrupt.

Pogge proposes a solution called the Health Impact Fund. In a nutshell, this would be an endowment financed from tax revenues (can you see me cringing?) which would reward pharmaceutical companies based on the health impact of their drug on the global population. Pharmaceutical companies would sell the drug at cost, and would be rewarded from this fund rather than realizing profits as they currently do. Please watch the video below and visit their website for a more thorough explanation.

I like the theory behind the Health Impact Fund, but I’m afraid that it is fraught with logistical nightmares, too many to go into detail about in this post. But I hope that they prove me wrong, and I commend this group for offering a solution and for actually trying to raise money for a pilot program.

If not this idea, then what? How can we overhaul the pharmaceutical industry so that it serves the needs of the human population, without having it become a bureaucratic nightmare and just another failed government program? I don’t think minor tweaks are the answer. I definitely don’t endorse socialization of the pharmaceutical industry. I’m sure other proposals have been made on how to repair the pharmaceutical industry. If you know of any, please share them with us in the comments section.

What’s so damned frustrating is that we can’t seem to get out of our own way. We have a clear and urgent need. We have abundant talent in both the public and private sectors. But while we debate, posture, blame, and politicize, incalculable human suffering continues.

Trust me. I know.