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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Wake up and smell the smoke.

Last I checked, it’s 2018. The human race has come a long way over its checkered history, building up vast storehouses of scientific facts and information. All our increased knowledge has led to increased wisdom, right? Not so fast, blog-breath. For some unknown reason or reasons, there are still people out there—a lot of people—who just don’t get it.

Take, for example, the continual morbid parade of those who drink and drive and kill. All our intellectual growth has managed to do is give us new ways to kill while we drive: Now we can be stone sober and kill while texting. We know it’s crazy. We know it’s deadly, but we still do it! At least drunks can claim that they didn’t know what they were doing when they got behind the wheel. Texters are just plain foolhardy.

I know a lot of folks who don’t take recycling seriously. Do they think the world has unlimited resources and dumping grounds? Do they not have children who will have to deal with the results of their negligence? And while I’m on the subject, why are companies still producing plastics without recycling symbols?

If you have MS or another mobility issue, you can freely attest to the fact that many people continue to unnecessarily and illegally take up handicap parking spots. I’ve seen cars occupying two spaces at a time. Now that’s despicable, and not in a cute, animated way.

Worst of all, people are still smoking cigarettes. To use the modern parlance: Seriously???

It’s not as if we don’t know better. Since 1966—that’s 52 years, folks!—packs of cigarettes have sported increasingly stern warning labels about their health dangers. It started with the relatively innocuous:

Caution: cigarette smoking may be hazardous to your health

The surgeon general (remember, folks, he’s a general; you should listen to him) upped the ante and the truth factor in 1969 by going to:

Warning: The Surgeon General Has Determined That Cigarette Smoking Is Dangerous to Your Health.

While a word to the wise might be sufficient, a word to the average addicted, advertising-indoctrinated American consumer is anything but. Now we see a variety of terrifying notices, such as:

WARNING: Smoking Causes Lung Cancer, Heart Disease, Emphysema, and May Complicate Pregnancy.

Yet, people persist in puffing away their health and well-being. And not just their own, but that of their children:

WARNING: Smoking by Pregnant Women May Result in Fetal Injury, Premature Birth, and Low Birth Weight.

…and everyone around them who breathes their stinking, poisonous second-hand smoke:

WARNING: Cigarette Smoke Contains Carbon Monoxide.

Side note to my neurologically-challenged friends: smoking has been connected to the onset of MS in addition to the usual suspects of cancer, COPD, heart disease, et al.

What kind of power does this little stick have that people world over are willing to put their and their loved ones lives on the line for it?? Not only that, but we pay for the privilege! More every year! From a cost of about 33¢ a pack 50 years ago to about $10 here in MA today (almost $13 in NY). That’s 4-5 times the rate of inflation. Those figures show only the direct cost of this heinous beast. The medical expenses incurred because of its use are about $300 billion a year according to the CDC.

The true cost is measured in more than money. It’s measured in the loss of the ones we love. My mother would likely still be alive today, had she not been addicted.

The sick joke is that we only lose those worthless years at the end of our lives, so who cares? (Well, my mother’s children, grandchildren, and great-grandchildren care.) But it’s not only length of life. As my MS friends will testify to those scoffers, quality of life is the real issue at stake. For instance, there’s the person I knew who, besides eventually losing life to COPD, had previously lost the ability to taste, to swallow, and to breathe unassisted. I once met a woman who was only about 40 when she was consigned to toting around an oxygen tank for the rest of her life because of her habit.

The thing is, we know it kills. In a classic case of dissociative disorder, a condition that is pandemic in our country*, smokers ignore the facts or pretend they’re exempt from reality. News flash: Denial doesn’t help. Strangely, we as a country spend about 30 billion dollars a year on health club memberships, most of which, it’s safe to assume, are never used. Maybe none of the folks in the fitness centers are smokers. Yeah, right.**

Please, stop smoking. You’re killing yourself. You’re killing others. You’re taking yourself away from the ones you care about far too early. You’re stinking up and poisoning the world for the rest of us. You’re throwing away hundreds of thousands of dollars over your (abbreviated) lifetime. You’re trashing this world. You’re relinquishing control of your life and resources to the tobacco companies, who know exactly what they’re doing to you and don’t care.

If only for the sake of people with MS, Parkinson’s, epilepsy, ALS, and the many other conditions over which they have no control, take control where you can.

Do you really need any more reasons?

* Other examples of the disorder: playing the lottery, the proliferation of guns in homes for our family’s “safety”, climate change, inactivity. There are many, many more.

** My favorite example: Recently I watched a yoga class being held in public. (Why it was out there for all to see is beyond me.) The yoga instructor was smoking a cigarette the entire time! Who would take instruction related to health from a smoker?!?! Punch in, folks!

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A pronunciation pronouncement

It’s news to no one that MS is hard. There are medications of all kinds that are supposed to make it easier. Yet even if they work they make our lives more difficult.

Many are way too hard to pronounce.

Case in point: Ampyra. Looks easy but no one can agree on how to say it. Is it am-peer-ah or am-pie-rah? A representative of Acorda (I know how to say that. Go figure.) was at a symposium not too long ago so I posed the question to her. She was non-committal. She was good with either one. I guess if we’re shelling out more than a grand a month for it, we get to call it anything we want.

Not good enough! There is so much uncertainty with MS, pronunciation of the drugs should be cast in stone. And easy! One less thing to worry about.

The newly approved Ocrevus is a nasty one. Is the “e” long or short? Is the emphasis on the first syllable or middle? Or (heaven forbid) last??? :-O I struggled with Tecfidera for weeks until I got a definitive pronouncement on that one. I’m still not confident about it.

And what about the rest of them: Tysabri, Mitoxantrone, Gilenya, Plegridy, and so on? I only remember Lemtrada because it sounds like the “Forbidden Dance”, the lambada. Is that a coincidence? Here’s one I’ve never even heard of: Zinbryta. No way I’m even trying that one. It sounds like it has to be prescribed by Dr. Seuss.

Give me Aubagio any day. It rolls off my tongue because I’m Italian and it sounds like something from a menu at an Italian restaurant. (“Hey, paisan! You want a side of Aubagio with your pasta fagioli?”)

Add “confusing pronunciation” to the lengthy list of side effects for these beasts.

In the spirit of practicing gratitude as a therapeutic approach to MS, I suppose I should be thankful we aren’t saddled with the scientific names. Would you want to ask your doctor for teriflunomide, glatiramer acetate, or alemtuzumab? So if you’re changing the name anyway, why not go with something simpler, say, Smith, Lorp, or Flant? True, they mean nothing related to the medicine’s purpose or composition, but can anyone tell me what information Extavia gives us?

Look, we already have to deal with words like exacerbation and subcutaneous. Why not cut us some slack on words you’re making up?

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What my MS says about you

[Back on November 8, before this blog went on a self-imposed hiatus, I mentioned the following concept, musing that I thought I’d written about it already. Chalk it up to my MS-addled brain creating false memories. I’ve searched and can find no evidence of such a post, so here goes (again?)…]

Based on personal experience, the way people have responded to the news that I have MS reveals a great deal about their personality and temperament. Here are a few examples:

I told a friend who is a financial executive. He went on and on about how I should protect my belongings, invest what I have, and sue my employer.

A young woman who happens to be one of the most positive people I know responded to the news of my RR-MS diagnosis, “At least it’s the best kind.” Reminds me of the old joke about the guy who fell off a 50-story building. As he flew by the 15th floor, he was heard calling out, “OK so far!”

One of the most pessimistic people I know immediately informed me of the person he knew who died of MS. Gee, thanks.

A very sensitive young male acquaintance of mine simply started to cry.

Many people say nothing at all, scared off by bad news they have no capacity or experience to process. In that sense, MS is a great filter. It siphons off fair-weather “friends” and hangers-on who can’t deal with reality. I’m probably better off without that kind of person in my life anyway. For example, there was a guy I used to work with who I often talked to at length about all manner of topics such as family, sports, vacations, and even, on occasion, work. From the moment I told him I had MS, he never spoke to me again. In fact, I’m not sure I ever saw him again.

A truly inexcusable reaction came from the manager I reported to who never had any idea what I was talking about. He had no clue what MS was and showed no inclination to find out. To this day, I really think he believed my limp and cane were for an ankle sprain. It’s not as if this guy had a hundred (or even a dozen) people reporting to him. I was one of about four people he managed. Yet he was too busy to concern himself with the details of one of his employees having a chronic illness, an illness that caused me to leave the workplace while I was on his team.

As we all know, the worst reaction is this one:

But you don’t look sick.

To which I now have a wonderful and apt response, courtesy of a comic a friend sent me recently:

And you don’t look stupid. Funny how looks can deceive, huh?

Let’s see what kind of reaction that gets.

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Welcome to Haiti, the s***hole

When a well-known racist refers to an entire nation of black people as a s***hole, what is he implying about its residents? He’s implying nothing, subtlety being beyond his middle school intellect. He’s saying outright that, in his opinion, the citizens of Haiti are s***. I know different. No one should believe the rantings of a narcissistic madman, no matter what position he lays claim to.

By sad coincidence, today marks the anniversary of the earthquake that killed tens of thousands of Haitians and left millions homeless. Another sad fact is that, if Haiti is in a hole, it’s one that has been dug by oppressive forces of this and other wealthy nations.

I was in that s***hole less than two months ago. Here are some photos I’ve taken there over the years. Draw your own conclusions. Is it a s***hole or is this the lie of an a**hole?

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