The Endless Cycle: Book 1

I’m pleased to announce the reason for my recent absence from the blog scene: My new book, Breakaway, the first in a four book series intended for middle-grade readers, has just been published. The description on the back cover gives you a good idea of what you can expect in the book:

A boy with no past finds himself on an endless bike trip looking for answers. What is his name? Where did he come from? Where is he going?
When he comes to town on the local bike path, he’s befriended by a compassionate single dad and his phone-obsessed daughter. But will that be enough to protect him from suspicious police, a crime ring, and a man with a gun, hot on his trail?
Join him in this first exciting adventure in the Endless Cycle: Breakaway!

It should surprise no one who has read this blog for a while that my protagonist is a serious bicycle rider. I will deliver each of the next three books in the series separated by no more than two months, approximately May 1, July 1, and Sept 1.

If you know anyone in the 10-16 age range (or anyone else who likes a good story) who is looking for some good reading, please check out “The Endless Cycle”. You can find the paperback and Kindle e-book today by clicking the image above or by visiting my Amazon author page here.

Feel free to contact me if you have any questions about this or any of my other writing.

Thank you for your support of independent authors.

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I Scream the Body Electric

Back in 1855, Walt Whitman’s renowned poetry collection, “Leaves of Grass”, was published. One of the best known poems in that collection was changed in a later edition (in 1867) and given the first line and title, “I Sing the Body Electric”. It’s a glorious phrase, one which has inspired many other works with similar titles.

Within those verses, Whitman rhapsodically recounts the wonders of the human body, its forms and its functions, its abilities and its attractions. He goes so far as to equate the body to the soul. Clearly he rejects orthodox Christian theology. Clearly he adores the human body.

Clearly he doesn’t have MS.

You don’t have to tell me about the body electric. I can feel its current as it zaps me into submission. When I get those electric shocks—they come at frequent but irregular intervals—they usually inspire not so much singing as screaming.

Yup, sometimes MS hurts. Wicked bad. MS can cause direct neuropathic pain (ice picks anyone?) as well as the indirect musculoskeletal pain brought about by the body’s futile attempts to compensate for weaknesses in its various members. And if you’ve ever experienced the electric joy of trigeminal neuralgia (a.k.a. “the suicide disease”, often associated with MS) you ain’t gonna be singing nothin’ but the blues. I could teach B. B. King and his Lucille a thing or two when dealing with such excruciating pain.

Pragmatic folks that we are, we neurologically-challenged take a more realistic, less poetic approach to the human body because we’ve experienced it at its worst. We also readily acknowledge that it’s a complete and utter mystery. Just ask my neurologist.

Look, I’m not saying the human body is bad. Even for people with MS. It’s essentially neutral. It responds to good and bad impulses alike. It brings us both pleasure and pain. It’s often strong, but sometimes weak. It succeeds and it fails.

To deify such a fickle beast would be a mistake. After all, the body is mortal. My God says my soul is immortal. That’s a major difference.

(NB: For another writer’s view of the soul, check out the excerpt in this post.)

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Book Review: The Inward Empire

There aren’t many quality books being written about MS. When I find one, it’s information worth passing along. I recently read “The Inward Empire: Mapping the Wilds of Mortality and Fatherhood” by Christian Donlan. It’s a terrific book and I highly recommend it. To save (my) precious time and energy, I’m reproducing here the review I wrote on Goodreads:

This is a wonderful book. If you have MS, another neurological illness, and/or children, it’s a great read. Caveat to those with MS: Do not take the book as prescriptive. Because of his slavish reliance on medical professionals and his own flawed notions, the author gets a lot of information about MS and its treatment wrong. He does so with such marvelous prose and wit, though, it doesn’t detract from the book’s overall appeal. In a twisted way, it adds to it.

One fact I learned from the book (I already knew it conceptually but had never labeled it as such): A major and dangerous symptom of MS is selfishness. It’s not only a symptom, it’s an exacerbating factor. Early on, the author tells his doctor that he doesn’t want to get involved in any kind of MS group. In fact, he never wants to meet anyone else with MS. This reluctance costs him dearly in unnecessary physical and emotional trauma.

I wanted to sit down with this guy and talk, not only to try to help him with some major misconceptions about MS, but simply because he seems like a great guy to sit and talk with. Thus, the double whammy of selfishness: He misses out on important insights from others who have limped down the road he is on and he deprives the rest of us of his insights, of which he has many that would benefit others.

Note that he isn’t alone in this attitude. It’s almost impossible to get the newly diagnosed MS patient involved in a support group. If he thinks he’s being counter-cultural, he’s wrong. He’s a caricature in this respect. And that’s sad. It truly takes a village to deal with MS. And not just a village of medical professionals. What ends up happening in many cases, including the author’s, is they end up using their immediate family as their support system, for those who are fortunate enough to have a family to rely on. That’s unfair to the family. And it’s less effective. Again: selfishness.

He’s spot on about his view that MS is unprecedented for everyone who gets it. Each person becomes the only expert in her case. He adds: “In some crucial way, you have to be alone with this.” While there is truth to that statement, it’s misleading. In a more crucial way, you have to get help from (and lend help to) others.

Strangely, the author seems to recognize his mistake when toward the end of the book he says, “MS turns you inwards, I think… It is time for a change of focus.” He reflects further (but not far enough, I think) on this error in the final pages of the book.

The final problem with the author’s story is his willingness to do whatever his doctors tell him. Obviously, I don’t know the fine details of his case, but it’s hard to comprehend a doctor recommending the powerful drug Tecfidera (his unnamed but clearly understood first drug) as a first line treatment. That’s almost unheard of in my experience. Then to move right to Lemtrada, a dangerous chemo drug and a huge hammer, is frightening!

But all that is speculation on my part about the way the author has chosen to follow his path. If his selfishness is his worst enemy, his curiosity might be his best friend. Followed closely by his thoroughly enjoyable writing (it doesn’t hurt that he chose to quote a great short story by one of my favorite authors, Mark Helprin, in one of his anecdotes) and his adorable daughter, Leon. And lest I forget: the British health care system, which has the US “system” beat hollow.

All that said, I loved the book and highly recommend it, especially to my MS friends. You will nod your head in agreement with the author, shout epithets in disagreement, and laugh out loud along the way. You might even shed a few tears.

Great book. Christian Donlan is welcome at my support group meetings any time.

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Looking for the magic pill

I have a very bad habit. (In truth, I have an extensive collection of bad habits, but that’s a whole ‘nother post.) I read comments people write in response to stories on the internet. This is the worst possible practice for anyone who wants to maintain even a modicum of hope and respect for the human race. Six years ago, I bemoaned the whole plight in this post. Things have not improved since.

For obvious reasons, among the internet articles I am particularly attuned to are those regarding the latest findings on Multiple Sclerosis. I have a friend who constantly scours cyberspace in search of just such material. He keeps me and my other neurologically challenged friends  abreast of all the current research. This disease is such a mystery, there is no shortage of research being done on the subject. An individual person (especially one with a disability) would be hard-pressed to even scratch the surface of the topic. His is an invaluable service to our little corner of the greater MS community.

Because virtually nothing is known for certain about MS, there is virtually everything to learn. As a result, many of the studies are far removed from the core biology of the condition, to the point of appearing preposterous. Thus, we see inquiries into how MS is affected by, among many other factors, exercise, diet, weather, socialization, salt, sleep, stress, and every combination thereof.

Recently, my de facto Minister of MS Information sent me a link to a story about a study in which mice with an MS-like condition improved as a result of exercise. If you’ve read many of my scribblings, you’ll quickly come to the correct conclusion that I’m a big promoter of exercise for people with MS. I thought this article was fascinating and would get people excited about the prospects of fighting the disease. Then I read the comments.

Big mistake.

There weren’t many comments on this article, but half of them were disturbing. They said, in essence:

Who funds this useless research? Stop wasting money on pointless research and find a cure!

This demand is wrong on so many levels, it’s hard to know where to begin. First, if and when a cure is found (and given Wall Street’s profit pressures on pharmaceutical companies, there is no motive to deliver one at all) it could be a long way off. Second, as a wise friend of mine often tells me, a cure is only half the battle, not even half for those whose MS has progressed to a debilitating state. (I suspect the author of one of the aforementioned comments was among that number because he said he couldn’t exercise. Hmmm.) Repairing neurological damage is the most crucial advance for those people. For them, a cure is no help; the disease has already done its damage. Myelin repair is where their hope lies. Progress there has been slow as well.

The real problem with the comment is the underlying attitude it betrays. The article described how people with MS can potentially improve their lot through exercise. These people didn’t want to do anything. They wanted someone to hand them a ready-made fix for their problem.

I get it cuz I have it. No one asks for this disease. It lays all sorts of often unreasonable and sometimes unbearable burdens on those who live with it. Asking them to jump through hoops to fight it isn’t fair.

Did some folks not get the memo?

To: World
From: Life

I’m not fair. Sorry.

That sounds cold. The truth often is. We play the hand we’re dealt. To expect every problem we have to be fixed by someone else with a magic pill is unrealistic and counterproductive. Especially if there are steps we can take to improve matters. For me it’s exercise and lots of it. Others have had success with diet. Having a strong support system has also proven beneficial. If someone isn’t even trying those, he simply isn’t trying.

I ardently hope a cure and a treatment to restore lost function are found soon. Meanwhile, sitting on my butt and complaining, waiting for a magic pill while MS ravages my body is not an option.

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We are what we do

It’s always a good idea to remind oneself of the positive side of having MS. There are a few posts about the topic in this blog, here and here for example, not to mention references sprinkled throughout my years of posts. (I’m very big on gratitude.)

One of the upsides is the free seminars (free food included, of course) offered by MS organizations and the pharmaceutical companies. There was an excellent breakfast meeting last month where I heard an eye-opening bit of information. The speaker was a physical therapist who has had good success helping people with MS regain lost function, especially with walking. Her treatments leverage the power of neuroplasticity¹ to reprogram the brain to improve function. That, in itself, was worth the price of admission. (OK, the admission was free; it’s just an expression.)

But she said something that had even greater implications for life in general, above and beyond MS therapy, as important as that is. For her therapy to be effective, it’s critically important that the exercises are done correctly. The number of reps and duration are of less importance than correct form. If the exercises are done wrong, our brains will think the wrong way is the right way.

The reason for this, she told her rapt audience, was (to paraphrase):

The brain doesn’t know right from wrong. It determines what is “right” merely by what we repeat.

Simply put, we rewire our brains through repetitive actions. If I continually scratch myself in some unseemly location, that becomes “good” to my brain. If we regularly speak contemptuously of minorities, we program our brains to be bigoted. On the other hand, if we follow the advice of Jesus and make a habit of loving one another through our actions we just might become loving people and make our communities better places.

I thought this was a brilliant new idea. It turns out, however, that philosopher Will Durant, summarizing the thoughts of Aristotle, expressed a similar idea, saying:

We are what we repeatedly do. Excellence, then, is not an act but a habit.

So, we are what we do. The question becomes, What do I do? What do you do? It has long term consequences for you and the people around you.

Something to think about. (I’m very big on thinking.)


¹ If you have MS, it’s in your best interest to look into the research on neuroplasticity. Google “MS and neuroplasticity” and you’ll find a wealth of helpful information, some theoretical and some practical.

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The double-decker bus of life

There used to be a great Italian restaurant nearby. The owner was an Irish guy (go figure) who adored All Things Italian. He traveled to Italy often to get ideas and ingredients for his trattoria. When my wife and I planned our first and long-delayed trip to Firenze, we asked his opinion about how to proceed. His advice was to start by taking one of those ubiquitous “hop-on, hop-off” double-decker bus tours. That way, we could get an overview of the beautiful city and with that background decide where we wanted to return to.

While those buses struck us as a might touristy, we took his advice and were glad we did. We rode all around the ancient city and found places we never knew about. When that tour ended, we returned to the locations that most appealed to us.

But even that wasn’t enough. When we returned home, we realized there was yet more we wished we had done. This is actually a pattern for us. We return from any trip and think of all the things we wish we’d done more, better, or at all. Part of this is a product of time constraints, but mostly it’s ignorance. If we ever had a chance to go back to any of those places, we’d finally know what we were doing.

I’ve recently awakened to the fact that my whole life is like that.

Now that I’m older and the great majority of my life is in the rear view mirror (where objects are closer than they appear) I’m just beginning to get the hang of it. By the time I’m dead, I’ll be ready to start and get it right.

Like Norma Desmond, I’m ready for my close-up, Mr. DeMille. And like the ill-fated Ms. Desmond, it will be too late.

Or will it?

There are no double-decker buses for life. We have this one vacation on Earth to get it right. What we envision coming after that is determined by our world view. If life is followed by complete annihilation, who cares? No harm, no foul.

As a follower of Jesus, I believe that the best is yet to come. My hope is in Him. Further, my hope is that all I’ve learned will make a difference in some cosmic, supernatural (i.e. His) way. And there will be no MS. That’s why it’s called heaven.

Meanwhile, I’ll continue trying to hone those skills that make life more of a joy to myself and all those I share this planet with. Maybe, just maybe, I’ll get a chance to put that hard-earned knowledge to use during my next, and much longer, stay.

After all, as Larry Norman famously put it, I’m only visiting this planet.

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It happens every spring

No time for a post now. To find out why, click here to visit a full post on my other blog, Scribbling in the Sand.

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