In the previous post I introduced my “pearls of wisdom,” presenting and briefly discussing the first 10 items on that list. Here are the remaining items:

11. Speak kindly; refuse to engage in hurtful speech. Act kindly; refuse to engage in cruel activities. Think kindly; refuse to engage in mean thoughts.

Of these, “speak kindly” is the most often ignored. Think how many times you’ve been with friends and someone has spoken poorly about a person who was not present. I still get caught up in that sometimes, but I’m improving. I’ve grown to find these conversations boring.

The most challenging of these is to “refuse to engage in mean thoughts.” Although I consider this is a worthy goal for purposes of maintaining inner peace, our unexpressed or un-acted upon thoughts have little impact on others. Our words and actions are what count.

12. Let stuff go. Just let it go.

We spent so much time rethinking and regretting our mistakes, and the mistakes of others. We need to just let stuff go, and move on – no small feat.

13. You have no control over the behavior of others.

As someone who has been a husband, a parent, and a manager for much of my life, I can attest to both the truthfulness and frustration of this statement. We want to believe that our influence over people will result in behavioral changes in a direction we desire. This happens once in a while, usually not because it’s what we want, but because it’s what the other person wants.

14. Replace “I don’t have time for that” with “that is not a priority,” and see if it still holds water.

Although it doesn’t seem this way, we all have a lot of time on our hands. We just have difficulty managing it. Ideally, we spend adequate time on our highest priorities and less time time on our lowest priorities. Most of us, myself included, fail miserably at this allocation task.

When you say that you don’t have time for a certain activity, in essence what you are saying is that this activity is not a priority. In an effort to make sure that you are not avoiding high priority activities under the guise of not having time for them, try substituting the phrase “that is not a priority” when you would usually say “I don’t have time for that,” and see if it still makes sense.       

15. Serve others.

I’m certainly doing more of this now that I have abundant time on my hands. I manage my daughter’s college expenses for her (student loans, etc).  I help out with a nonprofit called CCSVI Alliance.  I take time to share my experiences as a disabled person at this blog.  “Serve others” is a concept that pertains to close, personal relationships as well as to society in general.

16. Forgive others.

When you forgive others their transgressions, you’re not only making their lives better, but your own as well. Carrying around anger and seeking revenge are high prices to pay for someone else’s mistake.

17. Do one thing at a time.

This is a requirement of mindfulness. Stop multi-tasking. Ha! Try to sell this concept to anyone under the age of 30.

18. You are not in charge, but you are not helpless either.

It is liberating to admit that we cannot control events or others reactions to those events. Yet, it would be unsettling if we thought we had no influence at all. We have influence, but we must accept our considerable limitations.

19. Suffering is caused by attachment to desire. Desire is wanting something you don’t have.

Again, this flies in the face of modern American culture, where the object is to keep up with the Jones, or to die with the most toys. It’s a senseless game. Study after study has shown a weak or even negative correlation between material possessions and happiness. On the other hand, I’d rather be rich and miserable than poor and miserable (or does that statement only reveal my lack of understanding of this concept?).

20. Envision an outcome, only in order to set a direction. Don’t invest in the outcome; invest in the process.

Outcomes are often outside of our control. However, the processes that we employ in order to move toward a goal are within our control, and it’s the processes themselves that often provide fulfillment.

21. All we have is right now. Live it!

As someone with a highly uncertain future, staying in the moment is deeply important to me, and something that I work on constantly. I try to live each day as if it could be my last. Of course as a matter of practicality, this is impossible. But it’s the process of working toward this goal that matters.

22. You only have so much capacity for empathy. Conserve it for the important stuff. 

The best way to stop feeling bad for everyone’s misfortunes is to stop watching television news. At least 50% of the local and national news is designed to make you feel bad about stuff: accidents, fires, wars, global warming, recessions, starving children…there is no end to it. If you at least get your news in the paper or online, you can skip over the items that you don’t need to be concerned with. Yes, the world is full of horrors, but being reminded of that in daily doses at 6:00 in the morning, noon, and 5:00, 6:00, and again at 7:00 in the evening is not helping you to lead a happy life.

For a wonderful discussion of the evolution of “empathy,” click here. 

23. Spend time with people who are different from you.

And do that with an open mind. See what you can learn from them. Consider the possibility that your culture, or your circle of like-minded people, may not have everything right.

24. Be creative and have crazy ideas. Take risks.

You only get to live life once, and as one who is beyond the halfway mark, I’m here to tell you that it goes by fast. If we spend all of our time in our comfort zone, never venturing outside to consider new ideas or push existing boundaries, then we’ve wasted a precious opportunity. Dare to be creative. Entertain crazy ideas. Don’t be afraid to take risks. Remember to forgive yourself, and forget the pain, when you fail. I’m convinced that life is so much more enjoyable when it is lived this way.

25. Life hasn’t promised us anything. Life doesn’t owe us anything.

The odds are so incredibly stacked against any individual actually being born. Consider the chain of events that lead to your birth. Every direct ancestor of yours had to survive childbirth, live to at least puberty, and successfully procreate.  The offspring of that activity then had to meet with the same success. This had to happen innumerable times, and it had to happen to a great extent before the advent of modern medicine. Not one single ancestor broke the chain of success.

For much of human history, the odds of this success were poor for any given individual, let alone for an entire line of ancestors. When you think about it this way, we are so extremely fortunate to have ever been born that life doesn’t owe us anything at all. Just by having been born at all, we are forever indebted to life. This renders every day and every experience a bonus, a gift. If you enjoy one day of happiness or 100 years of it, you win.

26. Pick up after yourself.

27. Stop being such an asshole.

The last two items were added by my wife. 

(Photo credit: Steven Betts)

…or something like that.

Although my progression from a healthy person to a handicapped person was slow and steady, my transition from a working person to a legally disabled person was abrupt, like jumping off a cliff. One day I was working. The next I was retired, probably for life, at age 45. That’s just the way the system works. I’m reminded of the old saying, “It’s not the fall that kills you; it’s the sudden deceleration at the bottom.” I was decelerating in a hurry.

But it didn’t have to be that way. This transition was an opportunity for me to reevaluate what was truly important, and consider how life should best be lived. I had a lot of time on my hands to ponder such intangibles, so naturally I came up with a list. I’d like to share this with you, not because I think I have it all figured out, but because I have the time for this type of introspection, and maybe you don’t.

I call the list my “pearls of wisdom,” and I review it on a regular basis. I don’t simply read down through the list, but instead pause at each item and ask myself, “How am I doing on this issue?” As you might expect, I’m doing well on some and not so well on others. This is a living, breathing list which I update frequently. It’s not perfect, and I know that it’s missing some wonderful pieces of wisdom, but I find it helpful nonetheless.

You may notice that many of these items are borrowed from Zen philosophy. I regard Buddhism as a bizarre religion, yet within it I’ve found many practical lessons for enjoying a happy life. Here’s my list, with some commentary:

1.  Eliminate physical and mental clutter in your life. Simplify, simplify, simplify.

I surround myself with gadgets. I have computers and phones of all shapes and sizes. I have televisions and MP3 players and DVD players. I have stereos and indoor/outdoor thermometers and a robotic wheelchair and so many more things. I’m addicted to techno-crap. I know this isn’t good for me, but like a heroin user, I crave my next fix.

    I don’t know if I’ll ever get better at this, but I put it on my list in hopes that one day I will.

2.  Live fully in the present moment. Do not dwell on the past or the future.

It is so natural for me, and I’m guessing for you as well, to replay past mistakes and regrets over and over in my mind. Also, I continuously look forward to the next significant event on my calendar- a trip, party, sporting event, etc. My mind shouldn’t be focused on events of the past or future. Instead I should be concentrating on the here and now.

3.  Work on being mindful all the time.

To be mindful means to be totally focused and engaged in what is happening around you at the moment- not distracted with thoughts about anything else. Take notice of everything- the sights, smells, tastes, sounds, and feel. Don’t let your mind wander from the task at hand (no matter how boring it might be).

4.  See each incident for what it is and don’t carry any expectations forward to apply to any other incidents.

Human nature compels us to identify patterns, even where none exist. “Because he was mean to me once, he will be mean to me in the future.” Or, “Because this person of such and such heritage was lazy, all others of his heritage must be lazy too.” Well, maybe these statements are true, but quite likely they are not. Our tendency to over-generalize results in missed opportunities.

5.  You have already succeeded. You are where you are supposed to be. You have nowhere to go. You are already there.

This concept flies squarely in the face of modern American societal norms. We are all about self-improvement, identifying our weaknesses, re-inventing ourselves, etc. Yet, this item suggests a completely different tact. I can’t quite accept it as written though. Maybe there is some happy medium, where we are not totally complacent, but neither are we obsessed with self improvement.

Interestingly, this piece of Zen wisdom is inherently contradictory. If I am already where I need to be, then why am I studying Zen philosophy and seeking higher wisdom? Interesting paradox… 

6.  Live a life without apology (except when you truly have something to apologize for).

My friend Katja turned me onto this article:

    http://www.peertrainer.com/how_to_live_without_apology.aspx

This is a different way of stating the Zen concept in item 5 (You have already succeeded. You are where you are supposed to be…). In this case the author of the article talks about how we don’t need to seek other’s approval, and apologize when we don’t meet their expectations. Excellent concept.

7.  Give your feelings a chance to happen. Hear them out and then let them move on. Do not let them control you. Your thoughts and feelings come and go. They are not you.

This all makes sense to me, sort of. We can’t be consumed by our thoughts and feelings. Yet, if we are not our thoughts and feelings, then what are we? I haven’t figured that out yet.

8.  Practice moderation in all things.

Ya, right. I still watch too much TV, and surf the Internet too often. But I eat less and drink a lot less alcohol than I used to. Progress…

9.  When you are with the person you love just be there in total awareness. Be present in the moment without assuming or expecting anything.

This is the application of items 2, 3, and 4 to personal relationships.

10. You are not dependent on one another. You and the person you love are two self sufficient people who chose to travel through life together. One of you does not complete the other.

Ah, this is a loaded one. Modern romantic love concepts, which have not been around all that long in the grand scheme of human evolution, would have you believe that individuals are incomplete and lost until they find their soul-mate. Together, the two individuals merge into a single entity, and no longer exist independently.

At the risk of being labeled an unromantic person, and I have been more than once, I’m intrigued by the Zen approach to romance and love. “I am whole. You are whole. Let’s walk together, hand in hand.” Sharing your life’s journey with another, if it is the right person, can make life so much more enjoyable and meaningful. It has for me.

To be continued….

(Photo credit: Wikipedia)

I’m not a voracious reader, but I am a steady one. I always have a book going.

In the nine years since my diagnosis I’ve read a number of books about MS and other disability issues. Below is a list. I didn’t comment on each book in the list. Frankly, I can’t remember the content of most of them. This bothers me. The section of my brain in charge of remembering the contents of books or movies doesn’t work very well. Same deal with the section that is supposed to remember people’s names, or a funny joke. I don’t know if this is an MS (multiple sclerosis) or an M.S. (Mitchell Sturgeon) thing, but it’s definitely a thing.

Please email me titles, along with your impressions, of other MS or disability related books. Click on my email icon on the top right-hand side of my blog. I’ll summarize these in a future post.

Here’s my list:
 
Waist-High in the World, A Life Among the Nondisabled
Nancy Mairs 1996

Although this book was written well before I even knew what MS was, the story still rings true. It’s a memoir, describing the author’s journey from the time of diagnosis until the onset of significant disability. Although things were different in medical terms 10 or 15 years ago, the manner in which Ms. Mairs has dealt with the disease shows timeless strength and courage.

Fall Down Laughing: How Squiggy Caught Multiple Sclerosis and Didn’t Tell Nobody
David L. Lander 2000

This is the first of several books on my list of the celebrity memoir type. Strangely, the writing quality of these non-writers is usually pretty good. I suspect heavy editing. Only Montel Williams admits to having a co-writer (see below). Their story isn’t in-and-of-itself any more compelling than mine or yours. Yet, let’s face it, it’s more interesting to read about celebrity experiences than it is to read about Average Joe experiences, all else being equal. We are a society that loves our celebrities.

The only interesting point I remember about this book is how strongly David Lander felt that he needed to conceal his disease in order to survive in the acting profession. Unfortunately, he may have waited too long, as people started making assumptions to explain his poor walking (they thought he was a drunk).

Alternative Medicine and Multiple Sclerosis
Alan C Bowling 2001

This book was given to me by my neurologist, who has been consistent from the beginning in admitting that he has very few weapons with which to combat my primary progressive multiple sclerosis. I found this book to be well-written and well researched, but frankly I’m just not an alternative treatment kind of guy (says the guy who just had CCSVI treatment).

Meeting the Challenge of Progressive Multiple Sclerosis
Patricia K. Coyle, June Halper 2001

Multiple Sclerosis, Current Status And Strategies for the Future
Janet E. Joy, Richard B. Johnston, editors 2001

This virtual encyclopedia of all things MS came out of the Institute of Medicine, via the National Academies Press. Unfortunately, so many things have changed since 2001 that this book has become out of date. Hopefully an updated edition is in the works. Frankly though, things are changing so fast in the MS world these days, I don’t know if a comprehensive book can ever be published without finding itself almost immediately obsolete. This is a good thing. The lack of change that we used to see in the MS world wasn’t working for us.

When the Road Turns, Inspirational Stories by and About People with MS
Margot Russell 2001

The Art of Getting Well, A Five-Step Plan for Maximizing Health When You Have a Chronic Illness
David Spero 2002

Lucky Man: A Memoir
Michael J. Fox 2002

This is the first of Michael J. Fox’s two memoirs. His life certainly makes a compelling story, Parkinson’s disease and all. I’ve often said that the MS community needs a Michael J. Fox – a big-time celebrity activist for his or her disease. Maybe Julia Roberts or George Clooney. I would accept any member of the cast of Seinfeld, but they are getting a little old for an MS diagnosis. 

Multiple Sclerosis, A New Journey
Richard C. Senelick 2003

When Walking Fails, Mobility Problems Of Adults with Chronic Conditions
Lisa I. Iezzoni 2003

Climbing Higher
Montel Williams with Lawrence Grobel 2004

Blindsided, Lifting a Life Above Illness, A Reluctant Memoir
Richard M. Cohen 2004

Richard Cohen, a well known journalist in his own right, is the husband of TV personality Meredith Vieira. Not only has he fought multiple sclerosis, but also two bouts with cancer. This book is an excellent read.

Curing MS, How Science Is Solving the Mysteries of Multiple Sclerosis
Howard L. Weiner 2004

I hate the title of this book. Maybe from the perspective of a big-shot doctor who has dedicated his life to unraveling the mysteries of multiple sclerosis, it was time to write a book. However, from the perspective of a long-suffering multiple sclerosis patient who has received zero benefit to date from the medical community (unless my CCSVI treatment worked), I just don’t see it. This is a good read for MS historians (if such a thing exists), or for fans of Dr. Weiner (if such a thing exists). Excuse me if I’m a little sour about Dr. Weiner, but he is publicly trashed my favorite MS theory, CCSVI, so I don’t have much use for him right now.

Barrier Free Travel, A Nuts and Bolts Guide for Wheelers and Slow Walkers, Second Edition
Candy Harrington 2005

Candy is a wonderful disability travel writer. She also publishes a quarterly magazine called Emerging Horizons, and maintains a blog called Barrier Free Travels.

Yoga and Multiple Sclerosis, A Journey to Health and Healing
Loren M. Fishman, Eric L. Small 2007

This book does a decent job of presenting a variety of yoga poses that readers can choose from depending on their level of disability. After reading this book I practiced a few of the poses daily, for a number of weeks. I guess I’m just not a yoga guy, because it’s been quite a while since I’ve practiced any of these poses.

Multiple Sclerosis, Your Legal Rights. Third edition
Lanny Perkins, Sara Perkins 2008

This is a must-read for all MS patients, addressing issues such as: insurance, debt, disability, taxes, family law, discrimination, etc. 

Living with Progressive Multiple Sclerosis, Overcoming the Challenges, Second Edition
Patricia Coyle 2008

This was given to me by one of my favorite physical therapists, Judy Sweeney. You can read about Judy here.

101 Accessible Vacations, Travel Ideas For Wheelers And Slow Walkers
Candy Harrington 2008

It was because of this book that my wife and I enjoyed an incredible Caribbean vacation in April of this year.

Always Looking Up, The Adventures of an Incurable Optimist
Michael J. Fox 2009

This is Fox’s second memoir – probably not as compelling as the first, but I did manage to get through it and was happy that I did.

Primary Progressive Multiple Sclerosis, What You Need to Know
Nancy Holland, Jack Burks, Diana Schneider 2010

Multiple Sclerosis Manifesto, Action to Take, Principles to Live by
Julie Stachowiak, 2010

I am currently reading this book. My friend, the Wheelchair Kamikaze, recommends it. 

I’ve also borrowed a book or two from the local library. Here are a couple titles that I recall:

As for Tomorrow, I Cannot Say: 33 Years with Multiple Sclerosis
Diana Neutze, 2002

The style of writing and level of intellect of this author is very similar to Nancy Mairs, the first author in this list. If you like one, I think you’ll like the other. I do. Ms. Neutze still maintains a blog called Living with multiple sclerosis.

Caddy for Life: The Bruce Edwards Story
John Feinstein, 2005

In the strictest sense this is not a disability story. It is certainly not an MS story. It’s an accounting of the graceful passing of well-known golf caddy Bruce Edwards, from ALS. If you’re a golf fan, this is a heart wrenching story and a must-read.

I made my first blog post on July 22, 2009, called Let’s Get This Party Started. I’ve been so busy these past few weeks that only today did I realize that I missed my one year anniversary. Good thing this blog is not a woman…

In my first year of blogging I posted 86 times. Here are some statistics:

Average days between posts:                        4.2
Average number of posts per week:                1.7
Number of visitors:                       approx. 18,500
Average visitors per day:                    approx. 50
Busiest day:                               March 28, 2010 (after posting CCSVI- Diagnosis and Treatment Log Entry #7)
Visitors on busiest day:                                656
Slowest day:                             October 9, 2009
Visitors on slowest day:                                  6
Number of visitors on Christmas Day, 2009:       16
Visitors who don’t celebrate Christmas:            16 (estimate)

My busiest category was My Multiple Sclerosis Stories.  This is the memoir section of my blog that started with My MS Story Chapter 1 – My Left Foot Stages a Mutiny and ends with My MS Story Chapter 39 – Making a Smaller Me. Since it’s a memoir, and I’m still alive, I guess the story hasn’t exactly ended yet. My objective with this section of the blog was to relate to MS patients and civilians what it is like for a person to deal with multiple sclerosis, from diagnosis to disability. Of course my story is only one example. Multiple sclerosis is such a capricious disorder.  Each patient’s story is unique.

In the past few months I’ve posted often about CCSVI in general, and my CCSVI diagnosis and treatment experience specifically. That story is still unfolding, and CCSVI is a cause to which I am committed.

I’ve written about and created videos of my iBOT wheelchair. Right now the clock is ticking. In less than 3 1/2 years the iBOT will no longer be supported. Because it is such a complex device, it will essentially become useless after that time. I’m involved with a group of people who are trying to save the iBOT. Wish us luck.

This blog has been a blessing for me. I’ve thoroughly enjoyed writing it. I’ve reconnected with old friends and made new ones.  I’ve learned a lot about myself through the writing process (but I wonder if continuing to NOT think about my life would have been easier). Based on feedback I’ve received, Enjoying the Ride has been of some help to readers as well.  That puts a smile on my face.

Here are my ten favorite Enjoying the Ride posts, in the order they were posted:

How to Interact with a Disabled Person: 101

A few guidelines to help you understand the in’s and out’s, or do’s and don’ts, of interacting with a disabled person.

My MS Story Chapter 6 – The Things I Learned One Night in Nashville

Because it brings back fond memories of one cold night in Nashville.

How to Select the Ideal Life Partner

A tribute to the most important woman (and person) in my life.

One September Day in 1969

A tribute to the original most important woman in my life.

My MS Top 10 Lists

A sometimes serious, sometimes lighthearted look at the ups and downs of living with MS.

My MS Story Chapter 20- Sometimes I am the predator. Sometimes I am the prey.

An accounting of my attempt to maintain an ancient family tradition. 

My MS Story Chapter 24- Life’s Little Indignities

Recounts my major “coming out” business trip, and some of the difficulties I encountered during it. 

Have I betrayed my childhood self?

My attempt at waxing philosophical.

CCSVI- Diagnosis and Treatment Log Entry #8- My Final Thoughts

A summary of my CCSVI treatment experience, immediately after my March procedure.

Have you ever seen a Black Swan?

Because I’ve always felt that we don’t give enough credence to the role that pure luck plays in our lives. “You make your own luck,” is only uttered by fortunate people.

Such as…

“What if this weren’t a hypothetical question?” 

And, stuff like the following little conundrum.  On Wednesday I took my handcycle for a ride. I felt strong. I covered 2.6 miles with only a couple of stops. This is a very modest distance for a healthy person, but trust me, for a person in my condition it was impressive. The ride invigorated me, and set the stage for a relatively energetic day.

Then I went out Saturday morning and only covered 2.1 miles, and had to stop about 10 times. The ride did not invigorate me.  In fact, I never completely recovered from it until the next day.  What changed?

As I was finishing up Saturday’s ride, I started to ponder that very question. What changed?  I approached the problem in a systematic fashion. The cause of my weak handcycling performance could have been due to differences outside my body or differences inside my body. Let’s consider the outside first.

Was the course different? No, I followed the exact same course (a little shorter on Saturday though).

Was the weather different? No, it was sunny and about 70 on both days, with light winds.

Was the bike different? I don’t think so, although I didn’t inspect it closely.

Time of day?  Nope.  9:00ish on both days. 

Overall, it doesn’t appear that any external factors were responsible for my disparate performances.

So what was different inside my body? Two possibilities come immediately to mind: what I ate and how I slept.

On Tuesday night, before my Wednesday morning ride, I slept about 7 hours, which is my average. On Friday night, before my Saturday morning ride, I slept 8.5 hours, which was very unusual.

On Tuesday, I consumed 1,722 calories. Remember, I’m counting calories these days to try to lose weight. On Friday, I consumed 1,976 calories, which included 2 lite beers in the early evening.

Was it my menstrual cycle?  Nope.  Last time I looked I have only male reproductive parts.   

I can’t think of anything else that I did differently on the days before my morning rides. Was the combination of more calories and more sleep on Friday the difference?  Did Friday’s modest alcohol consumption have such a profound effect on Saturday’s handcycling performance? 

Another possibility is that there were changes inside my body other than diet or rest. The obvious candidate is MS. Remember though, I have PPMS, which means that my health doesn’t change much from day to day. I don’t have those classic good days and bad days like people with RRMS do.  But maybe having a chronic, disabling disease causes me to constantly walk a fine line, where even the slightest changes in variables either external or internal to my body have a profound impact on my ability to function.

Or maybe I just need to stop thinking so much. A less analytical person might consider the same experience and say, “hmm, I wasn’t nearly as strong today as I was on Wednesday. Oh well, it’s probably nothing.”

What do you say?

The answer is yes. You have seen many black swans. Allow me to explain…

Most of us embrace the illusion that the things we plan for will actually happen, and that the events that so-called “experts” predict will likely come to pass. We behave as if we live in a world that is stable, predictable, and follows some set of rules. This couldn’t be any further from the truth.

I recently read a compelling book on the subject, called The Black Swan, by Nassim Nicholas Taleb. He describes black swans as earthshaking events that are not anticipated, and that have far-reaching effects. Black swans can be public, like 9/11, or private, like a surprise pregnancy or a cancer diagnosis.  Black swans can be positive, like winning the lottery, or negative, like the financial crisis we are still recovering from.

Taleb explains that the events which have the most impact on our lives are not the day-to-day occurrences that we spend so much time thinking about and preparing for, but rather those catastrophic or wildly fortunate, completely unexpected events that we never see coming. This is not to say that we should ignore the little things that we can control, and wait passively for the wheels of fate to turn either in favor of us or against us. We need to be concerned both with the routine events of the day and the black swans.

So if unpredictability, chaos, and pure luck rule the day, then why even spend time shopping for groceries a week ahead or completely filling your gas tank? The answer is, because we just never know how long it will be until the next black swan, or what form it will take.  It is difficult to prepare for specific black swans, but we can take into account their existence. Taleb’s advice is to exert effort to minimize exposure to big, negative black swans, and increase exposure to big, positive black swans. Examples of minimizing exposure to negative black swans would be purchasing life insurance (for your spouse) and not buying a house in a flood zone. You can maximize your exposure to the positive black swans by looking for opportunities. Taleb says:

“Seize any opportunity, or anything that looks like an opportunity. They are rare, much rarer than you think. Remember that positive black swans have a necessary first step: you need to be exposed to them. Many people do not realize that they are getting a lucky break in life when they get it. If a big publisher (or a big art dealer or a movie executive or a hotshot banker or a big thinker) suggests an appointment, cancel everything you have planned: you may never see such a window open up again. I am sometimes shocked at how little people realize that these opportunities do not grow on trees….Work hard, not in grunt work, but in chasing such opportunities and maximizing exposure to them…you gain exposure to the envelope of serendipity…Diplomats understand that very well: casual chance discussions at cocktail parties usually lead to big breakthroughs- not dry correspondence or telephone conversations. Go to parties! If you’re a scientist, you will chance upon a remark that might spark new research. And if you are autistic, send your associates to these events.”

Consider my own situation. I played by the rules. I got a good education. I worked hard in a variety of jobs. But what defines me more today than anything else is the fact that I have MS. This was a big negative black swan, that couldn’t be avoided or predicted. I experienced another negative black swan when I found out that the iBOT, my advanced mobility device, was no longer being manufactured. On the other hand, my mother’s passing almost two years ago was not a black swan. Although it was tragic and had far reaching effects on me and others, it was not a complete surprise.

If the discovery of the connection between CCSVI and MS proves to be a key to understanding this damn disease, that discovery will, in retrospect, have been a positive black swan. I’ve exposed myself to that potential by undergoing CCSVI treatment, while not even knowing for certain if it will work.

(Photo credit: Wikipedia)

I’ve spent a lot of time avoiding negative black swans, yet I can’t elude them all. My point isn’t that we should forsake college educations or refuse to draft five-year plans. I’m not advocating that we avoid buying the groceries a week ahead. But I wish that we would admit to ourselves that as a species, the most sophisticated and intelligent species on earth, we still have very little control and very little understanding of the complex ways of the world. It is simply beyond our grasp.

For me, this discussion about black swans is not at all troubling.  It represents an enrichment of our understanding of the world, even if that new understanding is that we don’t understand, or control, nearly as much as we thought we did.  I find this concept, and the truth it reveals, to be strangely liberating. 

The bottom line- spend enough time on the mundane tasks to stay above water, carrying on as if the future is predictable. Spend the rest of your time avoiding negative black swans and exposing yourself to positive black swans. And most of all, try not to be shocked if the completely unexpected happens. In fact, be shocked if it doesn’t.

(Photo credit: Wikipedia)

It’s the year 2000. My wife and I have decided to move three hours away from the only town my kids have ever known. It’s time to break the news to them, and we dread it, partly because “moving” was one of my great childhood fears, right up there with the boogieman in the closet. But our 8 year old, Zachary, didn’t inherit that phobia from me. I remember exactly how he responded to our news. “That’s OK, because I’ll get to meet a lot of new friends, and I’ll be able to keep my old friends.”

What Zach said is true. Well, sort of. Well, not really. Every time we have a major life change, like switching jobs or moving to another town, we welcome new people into our lives, but we leave other people behind. It’s as if we have a fixed number of friendship slots. If new ones come in, old ones must go out.

Some of our friends just gradually drift away after a major life change, not because they weren’t important to us, but because the relationship succumbs to the erosive effects of time and distance- victims of the zero sum game I describe above. It’s rarely a conscious decision on our part. It happens outside of our direct control. That was the case after I stopped working a little over a year ago. I stayed in contact with some former coworkers. Others have begun to fade away, and I’ve also gained new friends.

Who are these new friends? I’m not working anymore, so how is it that I’m meeting people and building relationships? I’ve gone from interacting with dozens of people every day and traveling all over the country, to sitting at home most of the time. Thank goodness for the Internet. If I had gone on disability retirement 20 years ago I think I would’ve gone crazy from the boredom and loneliness.

In just the last decade or so, an entirely new type of human interaction has evolved, and the subsequent relationships often become meaningful, fruitful, and enduring. They start out as “virtual” relationships, but they can become very real over time.

I am active with several online groups having to do with multiple sclerosis and more recently with my iBOT wheelchair. My relationships with these people are like the close relationships I used to have with some of my coworkers. We share common goals. We get to know one another’s life stories. We talk “business” while sprinkling in conversations of a more personal nature. We support one another. We learn from one another. My life is tangibly better for having fostered these friendships.

Technology helps. I communicate with my online friends over the telephone, though email, texting, Facebook, Skype (perhaps the most intimate online communication platform), and several other methods. Last night I had my wife take this photo with my phone, and I emailed it to my new friend Michelle, with the caption, “Summer has begun at the Old Port.” I knew she’d appreciate the photo.  It took me about 20 seconds to make that quick connection to somebody three states away.

One of the advantages of online relationships is that they are not constrained by geography in any way. My friend Herrad, in Amsterdam, is an example of that.

I’m grateful for my online friends, and I appreciate the blessings they provide. It’s a particular thrill, though, when I get to meet any of these friends in person. Online communication is a wonderful substitute, but nothing replaces personal contact.

me with virtual friends turned real 

By the way, my son Zach didn’t keep any of his old friends from ten years ago. We kind of expected that, but there was no way we were explaining the realities of life to him on that fateful day in 2000. Childhood ignorance can be bliss.

The Top 10 Reasons Why I Hate MS (at least my version of MS)


10. Accessibility problems in general, bathrooms in particular. 

9. MS costs too damn much money. Most years I spend enough out of pocket money on medical expenses to exceed the 7.5% of AGI required to claim medical expenses as a tax deduction, even after insurance payments are taken into account.

8. Because this is a progressive disease, sometimes I don’t know what it is I can’t do until all of a sudden I can’t do it anymore.  I spend a lot of times on the sidelines watching people take part in fun activities.

7.  I miss all the good things that come with working, including income; sense of accomplishment; sense of being engaged in worthy endeavors; spending time with customers, vendors, and coworkers who are some of the nicest people I know.

6. It’s hard to stay healthy and maintain good body weight when I’m so inactive.

5. I miss outdoor activities like snowmobiling, ATV riding, camping, and actually walking in the woods when I hunt (I still hunt from my wheelchair). No thanks, not interested in handicapped skiing.

4.  I am completely reliant on technology. If a disaster struck (nuclear war, asteroid smashes into the Earth, Yankees win another World Series) how would I survive?

The Top 10 Silver Linings of Having MS


Let me be perfectly clear about this- MS sucks! But my life has changed so much due to MS, and some of that change has been for the better.  It’s been a one step forward, ten steps back process.  Here are some of the steps forward:

10. I have time to keep up this blog.

9.  I’ve met so many wonderful people I would have never otherwise met: people with MS, medical professionals, people who just care.

8.  Lifetime, complementary hunting license and state-wide doe permit.

7.  I can now justify the “3 movies at a time” option at Netflix.

6.  Wheelchair accessible tickets for Red Sox, Patriots, and Celtics are so much easier to get than normal tickets.

5.  I physically cannot clean a bathroom, rake leaves, or vacuum the house- three things I hated to do anyway.  Please, do not forward amazing new discoveries that will allow me to do any of these things again.

4.  I’ve become a better person in several ways. I’ve had to adopt Zen perspectives like “living for the moment” and “mindfulness” that I should have adopted anyway, but probably wouldn’t have if not for MS. I keep things in perspective better now. I don’t sweat the small stuff as much.

3.  I get preferential treatment wherever there are long lines: amusement parks, museums, boarding airplanes, etc.

2.  I’m out of the corporate rat race.  I run a lot of “if I had it to do over again” career scenarios in my head.  If I had a do-over, I doubt I would choose the corporate life again.  I missed out on my calling, whatever that was.

And the number 1 silver lining of having MS is…

1.  Handicapped parking.  Enough said?

What am I doing here anyway?

This was not the plan. When I started my blog after leaving the workforce earlier this year, I did not intend to write what is essentially a piecemeal memoir. What I had envisioned was a much less eloquent version of my friend Marc’s blog- Wheelchair Kamikaze. Marc writes amazing essays mostly dealing with MS but sometimes completely off-topic. He’s a deep thinker, but writes in a reader friendly manner- a rare combination. My initial posts were written along these lines, and then I published my first memoir piece. I was immediately struck with the idea of writing a series of memoir posts about my MS journey.

I suppose my stories would be more riveting if I had some additional calamity in my life. If I had been an alcoholic, or drug addict, or an abused child; if I had been born with a disability, or if I was an emotional wreck, or if my wife left me; if I had become severely depressed and suicidal after my MS diagnosis; if any of this had happened then I’d have more material to work with. But other than my mother’s accident when I was 5 years old and being diagnosed with MS when I was 38 years old my life has been pretty damn good, and “good” doesn’t make for interesting reading. I’m not complaining though. I’ll take a fortunate life over a lack of writing material every time.

I’ve posted 14 installments of my MS memoirs now, while sprinkling in some other essays, photos, and videos. The 14 “My MS Story” pieces cover the first four years of my journey with MS. Just last week I celebrated (celebrated?) the eight year anniversary of my diagnosis. It’ll probably take me 10 or 15 more installments to finish up the memoir portion of my blog. I’m not sure what I’ll do when I’ve exhausted that material.
  
I find memoir relatively straightforward to write because I’m only required to do half the work. I don’t have to conjure up innovative views about a particular subject, as I would if I was writing essays. I don’t have to dream up intricate plot lines and fascinating characters, as I would if I was writing fiction. I already have the material at my disposal. It’s in my memory. All I have to do is extract it and put it in writing. Nothing comes as easy to me as writing memoir. I wish more people would give it a try.

I sometimes ask myself what purpose I am serving with this blog. I don’t have a clear answer, but here are some thoughts. For healthy readers my writing may answer questions about what life is like with a chronic, disabling disease, or provide some perspective that is otherwise difficult to obtain. For people with MS my writing may be helpful by reminding folks that they are not alone in this journey, and that it is possible to live a contented life as a disabled person. For other folks with MS, who are not in need of a psychological boost, it might simply be entertaining to read about someone else’s experiences with this damn disease. I’m sure there is also a group of readers who know me personally, have watched me deteriorate over the years, and simply appreciate some detail on how this all came to be.

My internal system of values and morals keeps whispering to me that writing about myself is immodest, and therefore inappropriate. Like so many of our basic instincts though, like fear of public speaking and claustrophobia, this one needs to be considered in the light of day. Is this the kind of instinct that saves me from making a grave error, or is this the kind of instinct that unnecessarily hinders my efforts to do the right thing? Now I wonder, if writing about myself is immodest, then how vain is writing about writing about myself? These inner voices- are they voices of reason or irrational fears?

Sometimes when I publish a new post I worry about my family and close friends. I spent a lot of time in the last eight years downplaying the effects of this disease. It’s so much easier to tell your loved ones that things are going well than it is to delve into the gory details. So at times this blog has been a dose of reality for those closest to me. I’m revealing many issues here that I’ve never mentioned to anyone before, even to Kim. For these impersonal disclosures, I apologize.

I’m pausing, after 3 months and 23 posts, to ask myself if I’m on the right track. I’m a pretty logical guy. Typically when I have to decide if something has more of an upside than a downside I’ll make a spreadsheet, list advantages and disadvantages, and sometimes even use quantitative analysis to reveal the answer. I just can’t do that with this question though. For once in my life I’m going to decide something using my gut, not my brain. I’m going to keep writing just because it feels right.

I hope you’ll keep reading.