Fighting back

A post related to MS and coronavirus was already in the works on my computer. Then I reconsidered. I think we’ve all had our fill of such news and need a break. Besides, I’ve already done that. Instead, I’ll expound on a topic that was brought to my attention just last week.

In a recent presentation by my fellow MS blogger and author, Yvonne deSousa, she declared her philosophy of “fighting back” against MS through the use of humor. She does an admirable job of it. It got me to thinking that we all need an offensive game plan against this wretched and unscrupulous foe.

It wouldn’t be overstating the fact by saying that life with MS is a war. MS is the enemy. We can either surrender or fight back. As with any battle, we might fight back and still lose. There is no shame in that. The shame is in running from the battle.

The fight can take many forms. Here’s a list of strategies that comes to mind:

Taking MS medications is one way to fight back. They might not be effective in your case, but that’s the way of MS. It’s a slippery, deceptive enemy.

Maybe your weapons of choice are alternative treatments. Some might not even have been accepted by the scientific community, but at least you’re taking up arms in your battle.

Prayer is a strategy that has helped many–including me–beat back the foe. This goes hand in hand with faith in a Higher Power, something that has won many a battle for people struggling with addiction.

For Yvonne, laughter is not only good medicine, it’s a way of putting our common enemy in its place. The bad guy hates to be ridiculed. When we laugh in its face, we’ve already won a critical battle and we find the villain less fearful.

Gratitude, as well, mocks our adversary. MS wants us to wallow in the cesspool of self-pity, dwelling on what we can’t do and what we’re missing out on. That’s the path to surrender and defeat. But when we give thanks for what we have rather than obsess about what we don’t have, we are victors.

There is strength in numbers. If you were to face a mighty enemy force as a sole warrior, what would your odds be? Not so good, I’ll wager. No, we need a corps, a regiment, a community. Indeed, it takes a village to fight MS. Only a fool goes to battle alone. Wise Solomon put it this way:

…though a man might prevail against one who is alone, two will withstand him—a threefold cord is not quickly broken.

I can physically challenge my foe by exercising. MS does its best to lay waste to our bodies and minds. Exercising my body strengthens both.

Confuse and vanquish the enemy by serving others rather than self. Selfishness is the slippery slope to destruction. Moving outside ourselves builds the resilience we need to fight another day.

That’s one man’s list. How do you fight back?

[Please forgive the militaristic allegory. It would be inappropriate for a pacifist like myself except for the reality of this life and death struggle. Besides, it gives me a chance to use this picture from LOTR (without permission) to illustrate my point.]

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Get (Together) While the Getting’s Good

Image result for stay calm and isolate

Welcome to the brave new world of pandemics.

The threat of the coronavirus has plunged all of us into uncharted territory, unless you are well over 100 years old and remember the flu epidemic of 1918, which killed between 17 and 100 million people, depending on whose count we accept. We now live in a brave new world of working from home, toilet paper hoarding, and obsessive handwashing previously practiced only by those suffering from OCD. And that’s just the beginning. Once this beast has run its course—no one has any idea when that will be—we’ll have to deal with the fallout: business failures, a huge drain on unemployment compensation, insurance settlements, law suits, and who knows what else.

The suggested way to stop the pandemic, to kill the virus once and for all, is social isolation. That means that the way we are trying to stop the virus whose main victims are the infirm and elderly is by employing a tactic that claims those same people as victims in the best of times.

It doesn’t take much research to reveal that our country was already suffering from an epidemic of loneliness brought about by social isolation. I’ll get you started; check out these articles, both less than a year old: this one and this one. And this one talks about the problem in the context of the current crisis.

What they’re saying is that, long after the stores are restocked with toilet paper and people think of a beer first when they hear the word “corona”, we will still be dealing with problems such as depression and other isolation-induced conditions.

I’m well known for encouraging (though some would justifiably call it nagging) my friends with MS to get out and get together. It’s good therapy. It fights depression, cognitive decline, and other physical and emotional ailments beyond MS. Sadly, the prescription for stopping COVID-19 promotes the progression of MS.

I guess you can’t have it all. ((sigh))

Ironically, a lot of people practice social isolation anyway. Netflix, Hulu, Prime, and a host of other online services make becoming a hermit easier and more palatable, but not any healthier. It turns out that isolation is bad for everyone. It’s a fact: Socially connected people live longer.

My point here isn’t that we should defy the restrictions put in place to stop the spread of COVID-19, but that, once we’re out from under the coronavirus cloud, we should appreciate and take advantage of the ability to get together as often as we can. An unknown writer in the New Testament put it this way:

And let us consider how to stir up one another to love and good works, not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day drawing near.

Do it when you can because some day you might not have the opportunity.

[While researching this article, I came across this helpful and eminently readable brochure about isolation from the MS Society. I commend it to your attention.]

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Begin at the beginning

As the King of Hearts tells the White Rabbit:

“Begin at the beginning, and go on till you come to the end: then stop.”

Pretty basic advice, wouldn’t you say? Yet, when dealing with MS, some medical practitioners don’t always follow it.

If you recall your first talk about the disease with your neurologist or other medical professional, you might have been introduced first to the wonderful world of Disease Modifying Therapies. What you were looking for were Disease Ending Therapies, but those don’t exist, so we’re stuck with these.*

What if that’s the wrong place to start? What if we were to back up a little and start treating the person instead of the disease? Permit me to elucidate. Recently, a friend of mine (my de facto “Minister of MS Information” whom I mentioned in this previous post) sent me an article that couldn’t be any simpler:

The Top Five Ways to Keep Your Body Healthy

Hey, Doc, why not start here? General good advice for anyone, but especially for those of us in the MS community. I’ll reiterate them here with my snarky comments:

Don’t smoke. Duh! If you haven’t figured this one out yet, MS is the least of your worries. Cancer, heart disease, COPD, and a plethora of other woes will probably get you first. As if that weren’t enough, it might make your MS worse.

Eat healthy. Sorry. Contrary to a self-serving myth, there is no “MS cure diet”. Just get real with the fuel you intake.

Exercise. Just like Todd Rundgren wants to bang on the drum all day, I’ll bang on this drum until everyone gets the message: If you have MS, get moving. Studies at least as thorough as the ones used to test MS drugs have shown that exercise helps fight MS.** Doctors didn’t discover this. My hero Jimmie Heuga did. If you aren’t staying active, you’re aiding and abetting your MS.

Stress. We’ve only begun to discover the damage stress does to our bodies and our communities. For me personally, it’s the trigger that fires off my MS symptoms every time. Avoid it like the plague it is.

Sleep. Get enough sleep. Easier said than done but get it done if your health matters.

There, that’s the beginning, the baseline. None of those five “therapies” have side effects and their cost is minimal. Can’t say that about the DMTs.

If you want to discuss pharmaceutical treatments after all that, that’s up to you. Just don’t ignore the simple facts that have been true forever.

* It could be worse. A few years back, an article in the MS Society’s Momentum magazine told this story of one woman’s introduction to the disease: “The first doctor I talked to told me my husband and I would probably end up getting divorced and I would be in a wheelchair for the rest of my life.” ((heavy sigh))

** Some studies actually claim improvement in some symptoms such as walking speed, strength, cognition, and strength. My own personal study of a group of one (me) has confirmed those findings.

[Note: I was going to publish this post this next week, but found out (via today’s Google doodle) that today is the birthday of Sir John Tenniel, illustrator of Lewis Carroll’s Alice books. One of those illustrations graces the heading of this post.]

[Is that enough footnotes for one post?]

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More Weird MS Symptoms

Way, way back in August of 2012, when I was just a young, naive blogger and more diligent about posting my thoughts on this platform–as in more than once every 3 months (sorry)–I published a little blurb I called “Lesser Known MS Symptoms“. Since then, my condition has changed, surprisingly for the better. Just the same, every now and then a new one of those unusual manifestations of MS rears its ugly, though sometimes humorous*, head. I could just ignore them but why do that when they make perfectly good blog fodder?

Here are a few more:

Loose talk — Because MS affects nearly every bodily function, even the “sensitive” ones, we folks who live with the condition freely discuss those functions, whether they involve bladders, bowels, or reproductive organs. That’s what it’s like with MS. So don’t be disturbed if we bring up such subjects in mixed company. It’s what we do.

Anyone who has spent more than a day in a hospital understands this. We expect our dignity to be checked at the clinic door. We walk around half naked and people you hope are qualified medical personnel feel free to inspect and/or handle any body part they want. Welcome to our world.

Story redundancy — Because my memory is nearly incapacitated, I waste serious time watching the beginnings of movies (or reading the opening chapters of books) before I realize, “Oh! No wonder it sounds familiar. I’ve seen it before.”

Putting on airs — My right hand is half numb. As we say here in New England, that’s wicked uncomfortable. I try not to touch anything with my pinkie finger, not even the rest of my hand. For example, when I drink from a glass, I usually extend that finger so it doesn’t touch the glass or its neighboring digit. This makes me look like a wuss, and a pompous one at that.

Phantom fingers — This time of year presents me with yet another bizarre symptom. Because of the aforementioned issues with my right hand, putting a glove on that hand can be an adventure. It’s as if each of my fingers has a mind of its own. I slip on the glove and my fingers, the two worst ones at least, go wherever they will. Often, I simply can’t tell if all my fingers went in all the right places. I have to touch each glove finger to make certain it’s occupied. Sound weird? You should feel what it feels like. (See the photo at the top of this post for a picture of the rebellious fingers.)

Phantom phone calls — When I’m in a public place, I tend to have my phone set on vibrate so as to not annoy people around me on those rare occasions when someone actually calls me.** Worse, that “someone” is a robocaller, more often than not.

This presents a problem for folks like me whose MS has endowed them with issues of, for lack of a more accurate technical term, what I’ll call weird feelings. (You can read more about those here or here.) The fact is, at any given moment, some part of my body is always vibrating, including under my left thigh pocket where I invariably carry my phone. What this means is that I’m forever pulling the phone out, checking to see if I’ve received a call or text, and end up disappointed… and annoyed.

That’s about all that come to me at the moment. I’ll try to post new weird symptoms as I think of them. But right now I have a phone call to answer. At least, I think I do.

* Disclaimer: OK, there’s very little funny about this scum-sucking pig of a disease, but we have to laugh lest we cry. Just ask Ms. deSousa.

**Hint to those who don’t do this: No one wants to hear your ring tone in a theater or restaurant or any number of other public locations, no matter how clever you may think it is.

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Free screenwriting seminar

This was posted earlier today on my other blog. I thought I’d pass it along to my LITL readers. Writing is good creative therapy for people with MS; maybe this is for you!

Scribbling in the Sand

Everyone loves movies but how many people know what goes into a screenplay and what part it plays in the filmmaking process? If you’re interested in learning more about the answers to these questions, come to a free seminar I’m teaching on the basics of the craft of screenwriting. This seminar will be enough to get you started so you can study further on your own. Or, if you’d rather participate in a guided study, I’ll lead a longer class later in the year at the same location.

The free introductory seminar will be held Saturday, January 25, 2020 at 11 AM at The Artisans Exchange in Chelmsford, MA. If you’re in the area and this topic interests you, come by and learn more.

Satisfaction guaranteed or double your money back. 🙂

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Christmas Cognitive Dissonance

Every year about this time, I’m torn. On the one hand, I love to celebrate the most wonderful, joyous, miraculous event in human history: God condescending to become an infant, born into poverty to an exiled couple to teach us how to live and to save us from ourselves – as the song goes, “Born to raise the sons of Earth, born to give them second birth.”

That’s what Christmas is all about, Charlie Brown.

Then there’s the other Christmas: mindless shopping, gluttonous hyper-consumption of just about everything, depression, suicide, traffic jams, Hallmark romance movies, massive debt, and so many other wonderful American holiday travesties.

Are we crazy? The answer is yes.

We have a terminal case of Christmas cognitive dissonance. We talk about peace on earth, but are willing to rip our neighbor’s throat out to get the latest overpriced fad in the toy store. (One that will be broken and forgotten before the end of January.) We boo and jeer Mr. Potter in “It’s a Wonderful Life” then we elect him president. (Don’t deny it. The resemblance is unmistakable. You can throw the pre-conversion Scrooge in the mix, too. Don’t condemn him if you vote for his doppleganger.) We sing along with “Silent Night” but don’t spend a single moment–morning, noon, or night–in silence.

This is so insane, I’ve written about it several times, here and here and here, for example.

How did this happen? How did the commemoration of the birth of Christ turn into a glorification of all that He opposes? Where are the love, peace, and joy so many sing about but rarely experience?

I don’t have the answers to these questions, but I know Someone who does.

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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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