Tuesday, June 19, 2018

How are you doing?

The title question is not to be confused with the more common greeting “how are you?” Under no circumstances should you respond to "how are you?" as if the questioner gives a damn about your personal life. Acceptable responses are:

  • “Good.”
  • “Good, how are you?”
  • “Fine, thank you.”
  • or similar drivel
By adding only one word — “How are you doing?” — the innocuous greeting becomes a loaded question, especially when directed at someone with MS or an equally challenging condition. When I am asked, “How are you doing?” I have to make a decision. Do I undertake the hard work of telling the truth, or do I give a canned response? It depends.

I believe most people who ask me this question do so with sincerity. They wonder if the disease is progressing. They wonder if I’m coping well. They wonder if I’ve found an effective treatment. And I believe most people who ask me this question do so with compassion. They care about me, and they hope for good news.

Nevertheless, I reserve the right to give a canned answer such as “good” or “hanging in there” or “about the same.” I may not have the emotional energy to go any further at that moment. Just because someone invites me to delve into the gory details does not mean I am obligated to do so.

Still, if you are sincere and compassionate, here’s some advice on asking somebody like me “How are you doing?”
  • Ask me "How are you doing?" if it's been a long time since you last asked me.
  • Ask me if we are close friends or relatives.
  • Ask me if you are similarly afflicted.
  • Ask me if I am the one to raise the issue of my health (or your health for that matter).
  • Ask me in a more specific manner if you can. For example, if you know that I went to the cancer center for an infusion last week, instead of asking me “how are you doing?” ask me “how did that procedure go last week?” The more specific questions require less emotional energy to answer than the more nebulous ones.
  • Ask me later in the conversation, after the excitement of reconnecting with you has begun to wane. Let’s talk about the good stuff first.
  • Ask me at a bar, over drinks.
Also keep in mind. When you ask someone with a progressive disease “How are you doing?” you are asking a lot. Are you ready for the answer?

Wednesday, June 6, 2018

Playing the Disability Card

“Playing the disability card,” is a phrase that carries a vaguely negative connotation—like I’m getting away with something. Let’s examine that.

There’s not just one disability card. There’s an entire deck of them.

The Public Access Disability Card


A couple of years ago I came up with an idea to improve wheelchair access to the bridge between South Portland, where I live, and Portland, across the Fore River. After two years of negotiating, designing, and construction, there is now an accessible pathway. I wrote about it here.

When I play the public access disability card, I certainly don’t feel like I’m getting away with something.

The Personal Safety Disability Card


We had a pitched battle in my neighborhood about parking and traffic patterns. The issues were complicated and contentious. I wrote an email to all the city counselors and the city manager, which contained this statement:
With my proposed traffic pattern, the neighborhood is much safer for me to negotiate in my wheelchair. With the alternative traffic pattern, I’ll feel like I’m risking my life every time I cross the street.
Even though I played the disability card, I lost the argument. It turns out I may have overplayed my hand. I haven’t been killed on the street, and I haven’t even had a close call.

The Convenient Excuse Disability Card


My father didn’t like to go out and socialize. My mother did. So, when they had plans, and the weather forecast called for rain, he would say something like, “Looks like we won’t be able to go out after all. Can’t get your wheelchair wet.” In fact, they could get her wheelchair wet.

Kim and I don’t play these games with one another, but we’re not above using a phrase like, “We would love to join you, but Mitch is just a little tired today.” Everybody knows I have a serious disease, and invoking said disease gives us an instant, unarguable excuse when we would rather not participate in an activity.

This disability card falls in the category of “we deserve it.” It’s a little white lie that we’ve earned the right to employ on occasion.

Note to my friends: you can’t possibly know when I’m playing this card versus when I really am too tired to go out, so you may as well give me the benefit of the doubt.

The Handicapped Parking Disability Card


To be clear, Kim would never park in a handicapped spot without me. But even with me in tow, there is a gray area. Suppose Kim and I are driving by the grocery store, and she says, “Oh, we need milk. Do you want to come in with me or wait in the van?”

I might respond coyly, “I can’t decide.” This is code for, I don’t plan on going in, but because there is technically a chance that I will change my mind, or that some sort of emergency will occur and I will need to escape the van, this qualifies you to take one of those “van only” handicapped spots near the front.

This disability card is pushing ethical limits. On the one hand, I’m technically correct to keep all my options open—to preserve the ability for me to exit the van if I want to. On the other hand, what if I’m taking the last handicapped spot, and this decision pushes another handicapped person far out into the parking lot? Then, have I overstepped my bounds? Have I played the disability card out of turn? In this instance, I feel a little bit like I’m getting away with something.

Those Times When I Don’t Play the Disability Card


I often refrain from playing the card. I belong to a neighborhood association that decided to hold a celebration at an old, inaccessible tavern. I didn’t argue against this choice of venue. In fact, I helped with the planning of the event and kicked in 20 bucks toward the food spread, even though I couldn’t attend. The event wasn’t only about having the neighborhood get together for bonding, but it was about celebrating this ancient landmark, an establishment that would be prohibitively expensive to make accessible. I’m cool with that — just as long as venues like this are the exception rather than the rule.

The disability card is such a powerful tool. I want to use it appropriately. How do you decide when to play the disability card?

Tuesday, May 22, 2018

Available Summer of 2018

Enjoying the Ride
Two Generations of Tragedy & Triumph
Mitch Sturgeon


Details to follow.


Tuesday, May 15, 2018

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, na├»ve, 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.)


Tuesday, May 8, 2018

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. 

Wednesday, May 2, 2018

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?

Tuesday, April 10, 2018

A Letter to My Healthier Self

    I scour the earth for blog post ideas, and today I stumbled upon a good one. I like it when a person writes a letter to their younger self, and they impart wisdom learned through the travails of life. That gave me an idea for a blog post: A Letter to My Healthier Self.
I sat down to make a list of the things I would have done differently in my healthy years, knowing what I know now. Time to be profound.
The first item to pop into my head was this: make sure you run that marathon, climb that mountain, get those washboard abs. But then I thought to myself, “Self, you had other priorities in your 20s and 30s. You didn’t want to do those things because you wanted to do other things.” No, I shouldn’t advise my healthier self this way.
Then I thought: avoid all those activities that caused your MS. But wait. That won’t work. Nobody knows what caused my MS.
How about eating better. Yeah, I suppose eating better is always good advice, but there is no evidence that it would have made a difference with my MS.
Save money for a rainy day? Did that.
Make sure you have long-term disability insurance to supplement your income if you can no longer work? Check.
Life insurance? Check.
Marry someone awesome. Big check.
I thought about this all day, and I only could come up with one item for my letter:
Dear healthier self:
This is you, I mean me, I mean this is your future self writing to give you advice on how to mitigate an impending health disaster. Buy long-term care insurance. That way, when you need someone to come into your house and get you up, showered, fed, and ready for the day, or if you end up in a nursing home, these costs will be covered.
   Have a nice day.
Regards,
Mitch (2018)
Upon further reflection, that letter would freak out my younger, healthier self. What happened to being profound, anyway?
   The process of writing this blog post didn’t take me to where I thought I would go, but I think it took me to where I needed to be:
Dear healthier self:
This is advice from your future self. Keep doing what you’re doing buddy. It’s all good.
Have a nice day.
Regards,
Mitch (2018)

Wednesday, March 28, 2018

My Second Round of Ocrevus

Today I spent seven and a half hours at the cancer infusion center. That’s how long the entire Ocrevus infusion took, including an hour for pre-meds and an hour afterward for observation. If I were to apply Lean Manufacturing Principles (an engineering thing) to this process, I think we could have done it in about 90 minutes.
Ocrevus is the new, and only MS drug approved for primary progressive multiple sclerosis. It seems to work best on people earlier in the disease and younger than me, but I’m giving it a try nonetheless. I thought I would share with you the basic setup I had for the day. 

A: The reason was there — about $30,000 worth of Ocrevus, one of two infusions per year that I receive.
B: IV pump which delivered the Ocrevus.
C: Perfectly sized pillow from home
D: The spot on the back of my hand where the Ocrevus entered my veins. The first nurse, when she tried to find a vein, gave up without even poking me once. The charge nurse failed on her first try but succeeded on her second. Better than average.
E: Hospital issue pillow for me to rest my left arm on.


H: Plastic urinal for me to pee into. Same as I use at home.
I: Tablet. Not sure why I brought it since there’s no Internet there.
J: Water which I didn’t touch because I had so many fluids going into me anyway.
K: Equally useless mouse for the tablet.
L: Clunky TV remote for tiny hospital TV.
M: Smart phone which waffled between zero and one bar of reception — my only link to the outside world for seven and a half hours.
N: I can’t forget my trustee Permobil wheelchair, which kept me comfortably reclined for the duration.
Missing from the photo are the people who took such great care of me: a team of nurses and technicians and of course my lovely wife.
Overall, it’s not a horrible experience. The cancer patients got in and out more quickly than I did, but I won’t go home with terrible side effects like they do. I won’t be able to tell if this treatment is helping for about another six months or so. You people will be the first to know. That’s a lie. I will let you know… let's say… promptly.  Definitely promptly.

Tuesday, March 13, 2018

Thoughts on Coping

   
I can no longer type, and I can’t hold a book. I am unable to raise my arm high enough to wave at a friend. I am incapable of getting into bed by myself. I can’t eat, dress, or bathe without assistance. I need help to blow my nose. There are far too many itches I can’t scratch. The insult “he couldn’t hurt a fly” applies literally to me. I can’t walk, stand up, or even crawl. I can’t get up when I fall.
     These are just a few examples. I could give you so many more. And yet I would hesitate to trade my life for anyone else’s. Here’s why.
     I’m rarely wet, cold, thirsty, or hungry. I’m not afraid, intimidated, or abused. I enjoy broad liberties and freedom of expression. I do not suffer from clinical depression.
     I can still see, hear, and speak. I can swallow food and breathe on my own. I’m not in constant pain. I can operate a computer using a mouse and voice recognition software. I’m able to sit up in either of my two wheelchairs.
     I have a diversity of interests which occupy me all day long. I own a handicapped van and an accessible house. I have a strong support system, led by my incredible wife. I am loved and appreciated and well taken care of.
     These are just a few examples. I could give you so many more.  I know of several readers whose list of items to be thankful for is not as robust as mine. But I know of no one whose list should be empty.
     I must be careful. My message isn’t that if I can do it, then so can you. The last thing I want to do is be insensitive to people who are unable to cope as well as me.
     For example, I once received an email from a reader who wondered why she couldn’t be as content as I am even though her MS disability was less severe than mine. She felt sad about having MS, and she also felt guilty about not handling it in a more positive manner — a double whammy. She held me in unduly high regard for the apparent bravery I displayed in coping with my disability.
     My ability to see the positive in an otherwise difficult situation is due more to my genetic makeup and the skills I learned from my quadriplegic mother than personal courage or intestinal fortitude. I should be envied more than admired. Individuals who struggle with adversity and are unable to find the silver linings are not inferior or weaker people. It’s just that this particular skill doesn’t come to them naturally, and they must find it if they can.
     It’s not only people with chronic, disabling diseases who struggle to find contentment in this sometimes cruel world. Anyone at any time might experience depression or despair. Sometimes, if you’re lucky, relief can be found simply by pursuing a fresh perspective. But please know that help is available. There’s a wealth of resources on the Internet, and medical professionals and counselors have high success rates for treating depression.
     In closing, consider this quote from Helen Keller, who was uniquely qualified to address contentment: 
“Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.”


Clarifying note: I must acknowledge those folks, like my late friend George, who made the conscious decision to stop fighting. I support an individual’s right to choose such a route, particularly under extreme circumstances. 

Tuesday, March 6, 2018

2018 Cruise Post #4 — Ports of Call

On this 8-night cruise, we made only three ports of call, given that we spent two and a half days traveling from New Jersey to warm weather and back.
Port Canaveral
We left Bayonne, New Jersey on a cool Saturday afternoon. By Sunday, it was warm enough to walk on the deck but not to linger there. By Monday, throngs of sun worshipers basked in the 70° temperatures. On Tuesday morning, we found ourselves docked in Cape Canaveral, Florida.
Port Canaveral, as they call the cruise terminal there, is a major port for cruise ship departures, situated only 45 minutes east of the Orlando airport. But, as far as being a destination port of call, it has little to offer. Sure, you can tour Kennedy Space Center, but Kim and I had already done that. You can take a shuttle into Orlando and do the theme parks, but again, been there, done that. Still, we came up with something fun to do.
Kim’s parents spend their summers in Maine and winters in Clearwater, Florida, a two-and-a-half-hour drive from Cape Canaveral. They made the trip on this Tuesday, along with Kim’s Aunt Annabelle and cousin Ann, who were visiting Kim’s parents. We enjoyed a long lunch at a restaurant along the water within walking distance of our ship. This would be the only time we would see Kim’s parents between October and May.
Nassau, The Bahamas
Nassau is more of a traditional port of call. There are lots of local excursions and a busy downtown area within walking distance of the ship. Unfortunately for us, we were one of five major cruise ships to dock in Nassau that day. There must’ve been 16,000 passengers squeezing into the shops, restaurants, and other attractions of Nassau. Somehow, Kim and I found our way to a brewpub that wasn’t too crowded. We downed a couple of beers, walked around the block and decided that our beautiful ship would be a better place to spend the day. On the walk back, we took pictures of this private yacht. Turns out that it’s owned by a Russian oligarch, Leonid Mikhelson, and is valued at approximately $150 million.
Anthem of the Seas stayed in port until midnight, because we had only a short jaunt to Royal Caribbean’s private island the next day.
Coco Cay
A year earlier, we had visited this island with my brothers and their wives, and we had a great time. The biggest drawback is that Coco Cay has no pier. The only way to shuttle 4800 or so passengers to the island was on small, tender boats. We had no interest in that circus. This was the day that Kim rode up on the Northstar, and we enjoyed the relatively empty ship for hours. Royal Caribbean is building a peer at Coco Cay, so maybe someday in the future we will visit again.
Cape Liberty, Bayonne, New Jersey
We enjoyed the last two and a half days of the cruise as we returned to whence we began. When we disembarked the ship on Sunday morning, we were greeted by cold, hard rain as we packed up the minivan with all of our equipment. By late afternoon we were back at home. Kim joked that she needed to end the vacation so that she could get some rest and relaxation. That’s the sign of a vacation well spent.

I realize how fortunate I am to be able to go on vacations like these. Many people at my level of disability don't have this opportunity. It takes financial resources, an adventurous spirit, and a supportive partner. I'm lucky enough to have all three.