Bahamas 2012, #2: Getting There

I think that there are at least three people living inside of us at all times. There is an anticipating self, imagining the future. There is a remembering self, recalling the past. And of course there is an experiencing self, taking pleasure in, or sometimes merely enduring, the present.

Regarding our recently completed Caribbean vacation, the handoff from anticipating self to experiencing self was announced promptly at 3:00 am on February 19^th, by Kim's shrill alarm clock. Our goal was to get to the ticket counter when it opened at 4:30, for our 6:00 flight. The checklists were checked, the bags packed.

We spent a lot of time at the ticket counter in Portland jumping through hoops to get all of our stuff properly accounted for. Because I had so much disability related equipment in tow, we needed to check three bags instead of only two. I was able to negotiate, without much difficulty, that my iBot, my backup wheelchair, and my third bag would fly for free. The iBot is a wonderful device, but its Achilles' heel is its poor battery management, hence the backup chair so that I'm not a slave to the bars on the iBot battery strength indicator.

My brother Andy and his wife Karen were flying with us on AirTran, which was a tremendous help. My brother Tom and his wife Diane were flying USAir because, this being school vacation week in Maine, we couldn't find a block of six affordable tickets on a single airline.

After we had conquered the ticket counter we marched onward to security. Andy, Karen, and Kim passed through their screenings within minutes. Since I can't go through a metal detector in my wheelchair, I am routinely taken aside for a special pat down. Some disabled travelers are perturbed by this, but I'm not. I'm glad that our airlines are so thorough in this post 9/11 world (in retrospect, it would've been nice before 9/11 as well). They used a little wand with special fabric on the end, taking all sorts of swipes on my wheelchair and my shoes and my hands, and ran it through their magic bad stuff detection machine.

Something on my hands set off their machine, so I was taken, with my belongings, to an even more special room for an even more special screening by a higher ranking TSA agent. Throughout this process the agents were very polite and were simply following protocol. I never became frustrated with them, but I began to wonder if arriving only 90 minutes before my flight was cutting it too close. Eventually I was cleared to go, and rejoined my group, which I later found out had decided by a 2 - 1 vote to wait for me instead of making a run for it. Unidentified sources within the group quoted Kim as having plead, “Come on you guys. We’ll never have a better chance to ditch him."

By the time we got to the gate, they were ready to start pre-boarding the disadvantaged people, and me.

Each time I board or disembark a plane, there are at least two and sometimes three transfers involved. Each one presents its own challenges. When boarding this first plane in Portland, I positioned my iBot near the mouth of the plane at the end of the jetway. Then we initiated a set of highly orchestrated steps which we became more and more adept at accomplishing over the course of the week (4 flights, twice per flight).

I powered down the iBot, and Kim started disconnecting the joystick controller module. We like to take that expensive and fragile item on the plane with us so it doesn't get damaged by those oh-so-careful baggage handlers. Then I removed the foot pedals so that they too would not be damaged in transit. I handed these off to my sister-in-law, Karen, and she carried them on the plane, placing them in the overhead bin. I then instructed the airport employee who was managing the aisle chair (a special, narrow, wheelchair that can fit down the aisle of an airplane) to place it alongside my iBot, as close as possible, facing in the same direction as my wheelchair.

Then, little by little, I slid off my iBot and on to the aisle chair. Andy moved my feet a few inches every time I moved my butt a few inches. Eventually, the transfer was complete. At that point Kim lowered the seat back on my iBot, putting it in what I fondly refer to as “armadillo mode,” and instructed the baggage handlers on how to set and release the parking brake. Then the iBot was whisked off into the luggage compartment of the plane.

If the gate agent is doing their job correctly, the rest of the passengers are waiting patiently in the terminal while I complete this delicate process. About 50% of the time, however, succumbing to the pressure to stay on schedule, the agent prematurely allows the healthy flyers to start down the jetway so that 20 or 30 people can observe my elaborate boarding dance. I know time is money, but that's not cool.

Next, I was strapped into the aisle chair with about five different seatbelts. Finally, I was backed into the airplane by an entourage of concerned relatives, airport employees, and airline staff. As we were squeezing down the narrow aisle in the aircraft, inevitably we would drift too far to one side or the other and have to go forward a little bit to reset. Throughout the process everyone had an opinion, including me, so I guess you could characterize this as "boarding by committee." Eventually I was pulled alongside my assigned seat and my seatbelt leviathan was slain, releasing me from its many-tentacled grip (okay, maybe that's a bit over dramatic).

Ideally, the armrest on an airline seat should rise up so that I can easily slide into it from the aisle chair. However, on these AirTran flights the armrests were not movable. That made things a little more interesting. I somehow lifted myself up onto the armrest with Kim steering me from the inside and Andy guiding from the aisle. An airport employee anchored the aisle chair, and several other folks tried to figure out, mostly unsuccessfully, how to help (these situations often pull forth the better parts of human nature). I then slid down off the armrest into the seat.

Note to self: moveable armrests used to be a nice-to-have for me, but because of my disease progression I will consider them a must-have going forward.

As soon as I was in my seat the airport employee with the aisle chair shuffled out of the plane so that the thundering horde of passengers could begin funneling in. During the flights themselves, you wouldn't know I was handicapped unless you recognized me from the gate area, or if perhaps you asked me to stand in the aisle so that you could get to your window seat.

When we arrived in Baltimore, we allowed everyone to exit the plane ahead of us, which is standard procedure. There's no hurry, since I usually have to wait for my wheelchair to be taken out of the baggage area of the plane and brought up to the jetway. In this case, although we were changing planes to fly to the Bahamas, this particular aircraft was continuing on to Fort Meyers, Florida, and so was my iBot! Eventually, we convinced them to pull the iBot out of the plane and bring it up to me, even though it was improperly tagged for the sunshine State.

It had been a year since I had flown, and I had grown weaker over that period. So, the first time I tried to get myself out of the airplane seat and into the aisle chair, it didn’t work. Our first idea was to have Kim lift on my left shoulder and Andy on my right shoulder. That didn't work, and I landed back in my airplane seat rather awkwardly, crying out briefly in pain and urgently instructing Kim and Andy to adjust my position. I was embarrassed, but recovered quickly (something I’ve become adept at).

I decided that I would have to figure out a way to rise up out of the seat by myself, which I eventually did. For me, these situations are like solving an engineering problem, something that I did every work day for 23 years. Sometimes I solve these equations satisfactorily; sometimes I don't. After crunching some numbers with my slide rule (not really) I was able to get up onto the armrest, have Andy move my feet out into the aisle, and then slide down to the aisle chair. After being properly strapped in, I was squeezed down the aisle and out to the jetway, where we reassembled my iBot, and I transferred into it.

From the time I leave my iBot on a departing flight until I am reunited with it upon arrival, I feel somewhat helpless, completely at the mercy of others. But once I plant my butt back in the iBot I become a new person. At these moments my attitude is not all that different from my big-dog-in-a-little-body West Highland Terrier when I let her out first thing in the morning, full of piss and vinegar and ready to take on the world. I just don’t bark as much.

Click for next post: Bahamas 2012, #3 Still Getting There

Click for previous post: Bahamas 2012, #1 Deciding Where to Go

Bahamas 2012, #1: Deciding Where to Go

I recently heard something on a Ted talk, which, although obvious, I hadn't given much thought to before. Your parents leave you too early in life. Your spouse and your own children join you later in life. It's only your siblings who might be with you for the entire ride, if you're so fortunate.

It only makes sense, therefore, that my two brothers and I, and our wives, after having lost both our mother and father within a three-year period, would take a portion of our modest inheritance to commune on a tropical beach this winter – just the six of us. The concept of using some of their nest egg for a sibling retreat is something that our parents would have endorsed wholeheartedly. Dad, however, would have preferred that we fish for salmon in a remote region of Alaska or go on an African safari, the kind with guns not just cameras. But we’re not stupid men. We knew better than to even suggest such trips to our wives.

Kim and I thoroughly enjoyed our cruise two years ago, but the group decided to investigate various Caribbean resort options this time. The only problem was that, although there is much information on the relative accessibility of various cruise ships and ports of call, there is disappointingly little information about the relative accessibility of Caribbean resorts. Both our disability travel agent and my favorite disability travel author told us about one Mexican resort that is designed specifically for wheelchair users, but it is a bit small, and one of my sisters-in-law vetoed the whole country of Mexico out of fear of their drug war, so that was out. Her opinion is somewhat justified (click here).

We all agreed that we wanted an adults-only resort, so we started zeroing in on the various Sandals options. Eventually we decided on the Sandals Royal Bahamian, near Nassau, Bahamas. They have one class of room that is considered handicapped accessible, so we booked that room for five nights, and my brothers booked their non-accessible rooms at the same resort.

I'll be sharing these travel experiences with you in the next few posts, not because I want to make you jealous, but for the following reasons. If you are a healthy person, you might never have been aware of the difficulties associated with disabled travel. This will be eye opening for you. If you are disabled person who is hesitant to travel, you may benefit from hearing how we met our various challenges. This will embolden you (or scare the crap out of you). If you are a seasoned disabled traveler, you might get a few chuckles out of recognizing situations that you, yourself have faced. This will be validating for you.

Here's the bottom line. To a person, we had the time of our lives, and I’d recommend this vacation to any healthy couples. I’d like to do this again in the future, but unless Sandals makes some changes, it will not be at this particular resort. There were just too many accessibility shortcomings.

Did I mention that we didn’t see a drop of rain in 6 days? Jealous?

Click for next post: Bahamas 2012, #2: Getting There

Handicapped Parking

Image via Wikipedia

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

I’m on a Mission

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.

My Perfect Day

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.

Preserving My Identity

(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.

My Pet Peeves

If the video does not play for you, go to this link: http://www.youtube.com/watch?v=1diQG2Fz474

When Spouses Become Caregivers

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?

The Health Impact Fund - An Innovative Approach to Medicine or a Pipe Dream?

(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.

Losses and Gains 2011

As you know, I try to strike a balance here. I don’t sugarcoat my condition, but neither do I wallow in self-pity. As such, it seems appropriate to render an honest assessment of what I’ve gained and lost in the past year, and what changes may await me in the next couple of years.

Note that with my type of MS, the losses are not transient or reversible, but rather constant and permanent. Frankly, I hadn’t realized how rough a year it had been until I compiled the list.

And the gains? They can be fleeting or, with luck, they may last forever.

2011 Losses

• Driving (click here)
• Getting into bed unassisted
• Dressing myself, including footwear
• Reaching above my head (click here)
• Almost anything with my left hand (click here)
• Reading hardcopy books, magazines, newspapers
• Preparing my own meals and cutting the food in my plate
• Some washing/grooming tasks
• Most handwriting tasks
• Any hope for CCSVI success for me (click here)

2012 - 2013 Potential Losses (I’ll make a progress report in 12 months)

• Operating zippers
• The rest of my washing/grooming tasks
• The rest of my handwriting skills (signing my own name)
• Sitting up in bed, unassisted
• Transferring to and from my wheelchair unassisted
• Feeding myself
• A few things that I can’t even imagine (the devil you don’t know)

2011 Gains

• About 10 pounds (5 since Thanksgiving)
• A much more accessible neighborhood (click here)
• A wonderful new home (click here)
• Kindle e-reader (click here)
• Great vacation to western U.S. (click here)
• Long term disability benefits secured until age 65 and Medicare for life (click here)
• More new friends

2012 Potential Gains

• New power wheelchair for primarily in-house use (delivery this month)
• Saving the iBot (click here)
• Trip to Bahamas (February)
• Still more new friends
• Entire summer in new, more walkable neighborhood
• Stabilization of disease progression (unlikely, but possible)
• A few things that I can’t even imagine (like a Powerball win or an appearance on Ellen?)
• Another year above ground

Ralph Waldo Emerson once wrote, “We do what we must, and call it by the best names.”

So what do we call this? Life, I guess.

It’s still way better than the alternative.