Available Summer of 2018

Enjoying the Ride
Two Generations of Tragedy & Triumph
Mitch Sturgeon


Details to follow.

Optimism

    It sure seems like the world is going to hell: climate change, job insecurity, authoritarianism, racial strife, fake news, terrorism, and so much more. However, despite these issues, the human condition has never been better than it is now.

Because of my poor health, I’m not optimistic about my own situation. As I have stated here before, I suspect I will miss the cure by more than a few years. But I do harbor a general optimism about humanity. I resist falling prey to the constant barrage of bad news in the media. It’s what sells, but it’s not representative. You never see a story about how much better people’s lives are today than they were thirty or more years ago. Boring.

Am I unsophisticated, naïve, pollyannaish? Not at all. I have data to support my position (did you think for a moment that I didn’t). Steven Pinker is one of my intellectual heroes. Please take a few moments to watch his Ted talk and let me know what you think. (If you are receiving this blog post through email, click here to watch the video.)

The iBOT Lives (Again)

Looking Back

I’ve written here countless times about my stairclimbing, four-wheel-drive, balancing-on-two-wheels wheelchair, the iBOT. Here are a couple of excerpts about the iBOT from my upcoming book "ENJOYING THE RIDE: Two Generations of Tragedy and Triumph."

There is no relationship between human and machine more intimate than that between a wheelchair and its user. The chair serves not only the function of legs, but also couch, recliner, dining room chair, car seat, chaise lounge, dog walker, coat rack, drink holder, getaway vehicle, and shopping cart. It is, therefore, ironic that the customary term for such a condition is "confined to a wheelchair," when, in fact, the more accurate term is "empowered by a wheelchair."

I wrote about taking the iBOT home for the first time, after eight grueling hours of training:

On the drive home Kim and I found ourselves alone with the iBot. Our trainers were no longer there, approving or disapproving of every move. This reminded me of the drive home from the hospital so many years earlier with our first child, wondering if we were ready for the added responsibility, but excited about the future.

I received a letter, six months after purchasing my iBOT, announcing that the program had been discontinued, mostly due to the fact that Medicare would not reimburse patients:

From the time I took delivery of my iBot until the moment I read this letter, I had been an evangelist. Everywhere I went, I spread the good word about this life-changing device. Nobody with a progressive, crippling disease had ever been more delighted than me to obtain a wheelchair, not only because it improved my life, but because I became part of something bigger than myself. I felt proud to be one of several hundred people in the world to own an iBot, and I wanted anyone who needed one to have that same opportunity. Few causes come along in an individual’s life that are this deeply personal, this rewarding, this freaking awesome.
   And, poof! It was gone.

That’s where things stood for a few years. A number of us had our iBOTs, but nobody else would.

Looking Forward

The iBOT wheelchair was invented by Dean Kamen and his company, DEKA, located in Manchester, New Hampshire. Since the initial effort was shut down, Dean and his team have been working on a new iBOT.

Over the past couple of years, I, and a few other users have met with representatives from DEKA to provide feedback on their updated design. In one phone interview with representatives from DEKA, they asked me a series of questions along the lines of “would I rather have this or would I rather have that” in a wheelchair. Then they asked if I had any other suggestions for the iBOT.

I said, “Yes. I have three more pages. I just emailed them to you. Let’s go over them.” And we did. Each and every one.

Last week was something special, however. Kim and I made the 90-minute drive from South Portland to Manchester, so I could try out one of their prototypes. The new iBOT is a thing of beauty. After driving it for a couple of hours I made a few suggestions, but they were minor because DEKA has this thing well designed.

When they roll out the next generation iBOT, it won’t have many new functions compared to the old iBOT. It’s just that every function has been improved. The seat is more comfortable. The transitions between modes are quicker and smoother. Stairclimbing, balance, and four-wheel-drive work better. The controller and joystick are more ergonomic. The software is more intuitive. The chair is lighter and smarter. And the batteries? No more deep discharge required. Enhancements, such as tilt, recline, leg elevate, and automobile docking will be considered after the initial rollout.

With the redesigned iBOT, Mobius Mobility, a new company in Manchester, NH, is entirely focused on the manufacturing and distribution. Although they have obtained FDA approval, DEKA and Mobius are still working on a Medicare reimbursement strategy, and have confidence they can achieve a much better result this time around.

I wish I could answer questions like how much is it going to cost and when is it going to be available, but I don’t know those things. I do know that I saw lots of very smart people working on iBOTs last week, and these people are motivated to make the iBOT business permanent this time — permanent and better than ever. I can’t wait.

Note: Look for announcements in the coming weeks about the publish date for my book. 

The Wrong Side of History

I don’t want to die, but neither do I fear death. The reason I don’t want to die is that I hate the thought of not knowing what happens next. I want to see how this whole MS thing works out. What was the cause, and what year did they find a cure? How much did I miss it by — months or decades?

I’m also curious as to how humankind will fare. I’m optimistic. I think we’ll figure things out, and in doing so, our future selves will reveal our current selves as occasionally wise but more often woefully ignorant. One hundred years from now, I believe an enlightened society will cringe when they see how much pain and suffering people with MS endured, and will be taken aback by how much we struggled with some of the controversial issues of our day.  

Our public policy challenges fall into one of three categories: those with no answer, those that likely have answers but that we are struggling with, and those that have clear answers and should have been settled by now.

Challenges with No Answer (pendulum problems)

These are issues that, although contentious, have no clear answers and never will. Wise people, even 100 years hence, will always debate about where, on the continuum of possible choices, we should find ourselves. The pendulum will always swing back and forth on these issues, probably to a lesser extent over time, but will swing nonetheless. For example:

1. Taxation versus government spending — What role should government play in collecting taxes to support the general good versus allowing individuals to keep their hard-earned money. On one extreme are pure socialist or communist policies. On the other extreme are pure market/capitalism policies. No matter how unreasonable some of the debaters, the issue itself, where we ought to find ourselves on this continuum, will forever be a matter for reasoned debate.

2. What is the optimum amount of regulation? Without regulation, certain industries, in fulfillment of their fiduciary duties, can cause significant harm. If banks make loans to people who can’t afford to pay them back, then we place these borrowers in a difficult situation, and we destabilize the national economy. If we apply too many regulations, then we stifle commerce and unnecessarily interfere with individual and corporate autonomy. No matter how unreasonable some of the debaters, the issue itself, how much business regulation is fair and appropriate, will forever be a matter for reasoned debate.

Challenges That Likely Have an Answer, but Are Difficult to Solve

Enlightened societies in the distant future will eventually reach consensus on these issues. The problems are complex enough, however, that it is reasonable for us at this stage of our social evolution to be struggling with them. 

3. Recreational drug legalization – Would we be better off legalizing all mind-altering recreational drugs, some of them, or should we double down on the so-called war on drugs? I tend toward legalization, but that road is fraught with complications. There is no shame in us struggling with this issue for a while longer.

4. Regulation of pornography and prostitution in society — This is about an individual’s right to view pornography and/or make a living in the sex trade, versus society’s obligation to protect children from indecent images and to protect people from being in the sex trade against their will. My inner libertarian tends to think openness is the best solution, but I do worry about the over-exposure kids are already experiencing through the internet. This is the type of social problem we should be struggling with. This is a contemporary issue.

5. Euthanasia — When should physician-assisted death be legal and with what safeguards? I believe all individuals should have a right to choose their time and place of passing, but I understand some of the concerns. First, how can we be sure that individuals are not being pressured into a decision they wouldn’t otherwise make? Second, how can we be sure that we are not simply increasing the suicide rate for people who still have better alternatives than euthanasia? This is the type of social problem we should be struggling with. This is a contemporary issue.

Challenges That Should Have Been Put to Rest a Long Time Ago

Below are two issues that, in my mind, require no more debate. If you disagree with me, I think you are on the wrong side of history. I have every confidence that a more enlightened, future society will look back on these debates in much the way that we look back on debates about slavery, using leeches to cure illnesses, and whether the earth is the center of the universe.

6. LGBTQ rights — A certain percentage of people are born with or develop sexual orientations that are different from the majority. If the resulting acts occur between consenting adults, they are not unnatural, only unusual. If your reason for being discriminatory has to do with your religious doctrine, consider this. In addition to homosexuality, there are many other practices that the Bible forbids. These include eating pork, cutting your hair, and women speaking in church. Most religious people ignore these rules; why not ignore the Bible verses against homosexuality as well? If the reason that you discriminate against homosexuals is that they make you feel yucky, then you have to admit that the problem is more likely yours than it is theirs. Wrong side of history.

7. Pharmaceutical companies decide which medicines we get — Pharmaceutical companies have the resources to develop treatments, but they make their decisions based on how much money can be made rather than how many people can be helped. It’s not the fault of the individuals at these companies. They have a fiduciary duty to maximize shareholder value. The problem is, maximizing shareholder value and enhancing patient well-being are often at odds. Future societies will shake their heads when they consider how otherwise intelligent people from our time thought that the free market was the best method for developing treatments.  

There are so many subjects I could have mentioned and didn’t. There is so much more I could have said on each of the subjects I did raise, but I would’ve lost your attention, if I haven’t already. My point is, I find the exercise of imagining how we will be regarded by people 100 years from now to be enlightening.

I’m going to try not to die, so that I can see how all these things work out, whether it be MS or public policy. How do you think it will turn out?