Monday, August 30, 2010

25 Steps to a Happy Life (part 1 of 2)

Walking on the Beach
(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:
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….

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Wednesday, August 25, 2010

My MS/Disability Library

English: The main reading romm of Graz Univers...
(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.
Cover of 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

Cover of 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
Cover of 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.

Cover of 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.
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Thursday, August 19, 2010

One Year Anniversary of “Enjoying the Ride”

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:
IMG_1935Average 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.
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Saturday, August 14, 2010

CCSVI Diagnosis and Treatment Log Entry #10 – Results of My Ultrasound Examination

New York City skyline with Empire State Building
Image by meironke via Flickr
It is only possible to live happily ever after on a day-to-day basis.
  - Margaret Bonnano

Now that Kim and I have travelled to New York City three times in the past five months, for CCSVI related reasons, I find myself growing negligent in my sworn duty to hate the Big Apple. New York is beginning to grow on me.

I was raised to loathe New York City, primarily because our Boston sports teams competed with theirs. I not only hated the Yankees, Jets, and Knicks, but by extension the Empire State Building, Central Park, and musicals (both on-Broadway and off). Evolution has favored the human trait of “in-group loyalty.” Unfortunately, this trait naturally gives rise to “out-group hate.” Why? Maybe it’s because by denigrating outsiders, if we don’t entirely love the circumstances into which we are born at least our condition seems favorable by comparison.

Although New York City continues to grow on me, I won’t be moving there anytime soon. And don’t worry Red Sox Nation, there are some absolutes in this world after all. The sun will rise in the east tomorrow, a bear will shit in the woods tomorrow, and I will still hate the Yankees tomorrow (and musicals).

In March I was diagnosed with and treated for a condition called CCSVI, which is believed to be related to multiple sclerosis. This occurred at Brooklyn's Kings County Hospital Center, under the direction of Dr. Salvatore Sclafani. That was NYC trip #1.  To read about my CCSVI experiences, click here.

In late July of 2010, Kim, Zach, and I traveled to New York to attend Dr. Sclafani's CCSVI symposium. More precisely, I went for the symposium and Kim and Zach went for the sightseeing. They learned a lot about the New York City subway system that day - some good and some bad. This was NYC trip #2.

I thoroughly enjoyed the symposium. I was able to listen to and even rub elbows with some of the top CCSVI physicians and researchers in the world. I also met with several of my online MS/CCSVI buddies, and spent time with members of CCSVI Alliance, the non-profit organization that I volunteer for.  I had hoped to combine the symposium trip with an ultrasound examination at Kings County Hospital, but unfortunately the doctor who was trained in that procedure was unavailable on that day.

So, just two weeks later, Kim and I made NYC trip #3 for the aforementioned ultrasound test. Dr. Zamboni, the Italian physician who coined the term CCSVI, developed a specific doppler ultrasound protocol to determine if a patient does or does not have CCSVI. In order to meet the diagnostic criteria for CCSVI, a patient must demonstrate two or more of the following five criteria during the ultrasound:
1. Reflux (blood flowing in the wrong direction) in the internal jugular veins, in the vertebral veins, or both.
2. Reflux in the deep cerebral veins, and/or in other venous segments of the intracranial compartment.
3. Evidence of internal jugular vein narrowing (stenosis).
4. Blood flow not detected by doppler in one or both of the internal jugular veins or vertebral veins.
5. The cross sectional area of either internal jugular vein is wider in a sitting position than in the supine posture.
I met none of these criteria. Well, at least I don’t think I did. The examining physician, a colleague of Dr. Scalfani’s who was trained just a few weeks ago at Dr. Zamboni’s clinic in Italy, still considers the test somewhat subjective.  I am grateful that he was frank with me about that. He’s doing his best, but it’s not a straightforward task by any means.

How do I feel about the results of this latest visit to Brooklyn? Should I consider it good news that I don’t have CCSVI anymore, or should I consider it bad news that there is nothing more that can be done for me right now? Excellent question- I wish I had an answer. I wish I had a lot of answers.

What, then, is going on with my CCSVI and my MS? Here is where things stand:
  • It’s still too early for me to say with certainty whether my disease progression is the same, slower, or non-existent. Stay tuned.
  • It is not too early, however, for me to state that I’ve definitely not improved, as many others have (although not everyone).
  • Based on what Dr. Sclafani saw in the March venogram, I almost certainly had CCSVI in my internal jugular veins and possibly in my azygos vein. He ballooned all three for good measure.
  • Based on the ultrasound test this week, I likely no longer have CCSVI type problems in my internal jugular veins. We can’t know about the azygos, as this ultrasound test does not look at that vein.
  • I may or may not have flow restrictions in various other central nervous system veins such as the lumbar and vertebral. Even if I knew that these veins had restrictions, we couldn’t know yet if this would affect my MS. Furthermore, even if we knew it could affect my MS we probably couldn’t treat those veins. Much more study is needed.
  • There is nothing further that can be done for me right now relative to CCSVI, although as we learn more about CCSVI there may be procedures I can undergo later.
What, then, is going on with my general sanity?  Here is where things stand:
  • Going forward, I need to keep my finger on the pulse of CCSVI research while not obsessing over it.
  • I will try to heed the words of Margaret Bonnano (at the top of this post), and “live happily ever after on a day-to-day basis.” It will not be helpful for me to long for the healthy days of my past, or worry too much about my uncertain future.  I need to stay in the moment.
  • I am alive; blood is coursing through most if not all of my veins; and despite everything I am still Enjoying the Ride.
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Sunday, August 8, 2010

Media Coverage

First, CCSVI Alliance, the 501(c)(3) non-profit organization that I volunteer for, had some good media coverage.  Check out this link.  Doesn’t their president, Sharon Richardson, look soooo presidential? 


Second, my friend Marc Stecker, aka Wheelchair Kamikaze, is featured on the cover story in the Fall 2010 edition of Momentum magazine, seen here. If you’re one of the few individuals in the MS world who has not yet visited his website, click here


Sunday, August 1, 2010

Taking the iBOT to Bar Harbor

Check out my latest iBOT action video.  To see my other iBOT videos, look on the right-hand sidebar of my blog.  Enjoy!