MS and Hadassah

Hadassah is a name that is very close to my heart. It’s also the Hebrew version of the name of the Biblical character Esther, heroine of the eponymous book. That lady with two names has a lot to teach us about life with MS.

Back in the 5th century BC, Hadassah/Esther lived in captivity in Persia along with most of the Jewish people of the time. That’s already one big strike against her.

Some time during the Persian king’s rule, his queen had the audacity to disobey her husband. (One tradition has it that he wanted her to perform an impromptu strip show at a drunken party he was having with a large mob of male friends.) She was removed from office–whatever that means; it certainly wasn’t good for her health–for her insubordination. (Thank God times have changed… mostly.)

It’s pretty obvious it wasn’t an easy time to be a woman back then. In case you needed more evidence: The king decided to hold an “audition” for the next queen, kind of a “Miss Persia” contest, but presumably a lot more intrusive. Esther, evidently a very attractive young lady, was paraded before the king along with every other cute babe in the kingdom, like so many slabs of meat. Not the most esteem-building situation. Things aren’t looking any better for our friend.

In the end, she wins the dubious prize of being crowned the new queen, forced to marry (etc.) this misogynistic, egomaniacal, pagan king. (Some things never change.)

What the heck does all this have to do with MS? Bear with me, please.

The point is, people with MS are also in a tough spot. We can face it with one of two questions:

  • Why me?
  • What now?

I’ve already addressed this conundrum here, among other places. The former question is a waste of time and energy, something people with MS have precious little of already.

In Esther’s case, she was put in that uncomfortable (to put it euphemistically) position for the purpose of saving her race. You can read the full story to get the details (highly recommended). Suffice it to say, if she’d never faced those difficulties, the entire Jewish population of Persia would have been wiped out, an early version of the holocaust, if you will. She didn’t ask “why me?”, she asked “what now?” The answer came from her cousin, guardian, and living conscience, Mordecai, who uttered the now famous words:

“…who knows whether you have not come to the kingdom for such a time as this?”

Who knows why I have MS? I might never know, but I’m doing what I can to fight it and to support others in the same battle.

One friend of mine had to move to assisted living. He could cry in his pillow or moan and groan. Instead, he’s using his strengths to advocate for others in the facility who are less able to do so.

Others I know serve on local accessibility committees, write newspaper articles about disability issues, create products to assist the disabled, write humorous blogs to lift the spirits of people with MS, and drive people who have no other means of transportation.

Those good people could hole themselves up at home, watching TV (which merely accelerates the deterioration of their brains) and feeling sorry for themselves. Instead, they’ve signed up for the Hadassah Plan. It dovetails nicely with the philosophy once described by St. Paul in a letter to his friends in the ancient city of Corinth, when he tells them about…

…the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

Did you catch it? Maybe, just maybe, we’ve been given these adversities for the sole purpose of helping others. And while it’s hard to think of it this way, that makes the burden a grace.

Hadassah got it. One person suffered so that thousands could be saved. How many lives can I touch?

Something to think about.

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The Slumbering MS Writer Awakens

I find it more than slightly amazing that it has been eight months since my last post in this blog. (Not including shameless advertisements for my books.) The guilt weighs heavily on my mind, but so do self-imposed deadlines. In case you weren’t aware, I fancy myself a writer. No! Strike that! I am a writer. I know because I spend a lot of time writing. If I spent a lot of time painting, I’d be a painter. But I don’t because I have neither the talent nor inclination to do any form of painting, from canvas to walls. So I’m a writer.

I guess the fact that I have six (very soon to be seven) books (self-)published lends additional credibility to my claim. (See here for the list.) Alas, my writing keeps me from writing. To be more precise, the writing and publishing of those books has rendered this platform largely quiescent. (Look that up in your Funk & Wagnalls.)

With said seventh book almost in the proverbial can, the guilt has driven me back to the keyboard. This is the result.

As a writer (I don’t know if you remember that part) it should come as no surprise to anyone that I like words. They are endlessly fascinating playthings as well as tools. Among my favorite words are “capricious” and “pernicious”. They sound great and they express a great deal of feeling as well as information.*

They also capture the essence of Multiple Sclerosis. Note the definitions (from the Merriam-Webster web site):

Pernicious – highly injurious or destructive

Is it just me or does it seem as if someone with MS coined that word? Even the archaic usage is apropos: wicked. Note: We aren’t talking about the New England colloquial use of that word. MS is wicked in the good old-fashioned sense of nasty and evil.

Here’s the other one:

Capricious – governed or characterized by caprice : impulsive, unpredictable

There you have it, a two word summary of MS: destructive and unpredictable. But we should feel justified in using more impressive words when we discuss this beast, shouldn’t we? After all, we’re the folks who nonchalantly toss around highfalutin words such as “subcutaneous” and “exacerbation” in casual conversation. (More on that here.)

MS has taken enough. It’s time we took something back: Our right to be pretentious!

* Not coincidentally, both words (albeit one, “capricious”, is used in an alternate form, “caprice”) are used to great effect in one of my favorite screenplays, the 2005 cinematic version of “Pride and Prejudice”. (For a discussion of the various versions of that wonderful Austen story, visit this post.)

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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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