Remission?

I have Multiple Sclerosis.

Not surprising. I’m writing a blog partially dedicated to the topic.

The one thing we know for sure about MS is that no one knows anything for sure about MS. (Thus, the reason I call it the Sergeant Schultz disease.) My condition is quite good, compared to many of my friends. In fact, my physical condition has prompted two different people in one week to ask me: “Are you sure you have MS?”

My neurologist, MRI’s, and body agree that I do. That’s good enough for me.

Why have I been spared so many of the disease’s ravages while others have not? Again, who knows? Not being on any of the MS meds, I chalk it up to the grace of God and my PB&J therapy. Like any other MS treatment, it’s not guaranteed to work for everyone, but I swear by it. I used to swear at my meds.

Other people have asked me a most puzzling question:

“Are you in remission?”

I don’t like that question because I don’t think there’s a good answer, kind of like that old sick joke, asking a guy if he’s stopped beating his wife. Any answer gets me in trouble. The question is based on the incorrect assumption that MS has a state of potentially permanent remission. It doesn’t.

This is understandable because of the unfortunate terminology adopted to describe the different “types” of MS. One of those labels, Relapsing-remitting MS (RRMS), seems to imply a permanent state of remission, but it’s different than, say, cancer. When a cancer patient says she’s in remission, that’s usually cause for rejoicing. Not so much with MS. The remitting state is usually just a rest stop between relapses, attacks, exacerbations, setbacks… choose your favorite term. That sword is always hanging over our heads, no matter what stage we’re at. (Admittedly, cancer patients in remission suffer the same uncertainty.) I might be doing well today, but I could be flat on my back tomorrow. It’s happened before.

There used to be a label called “Benign MS”, a class of the disease characterized by a remission-like lack of progression or relapses over a long period. That led to people thinking they didn’t need to buy any MS drugs and we couldn’t have that, could we? Yet, there are many people out there who have had a single minor MS attack that led to no further attacks or progression over the next decades. Are they in “remission”?

Let’s face it: It’s a crap shoot whether you’re benign, RRMS, or progressive. Drugs may or may not work; not taking drugs may or may not work.

As I said, I don’t like the question. And I don’t like the disease. Neither has good answers.

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“A Song in the Storm” is here!

From my other blog, to save some keystrokes…

Scribbling in the Sand

As threatened, er, I mean, promised, my new book is finally available.

The story follows a young woman living in Lucca, Italy, in 1924. Gifted with a magnificent singing voice, she is on the verge of fulfilling her dream of becoming a professional singer. Her dream is crushed when her father tells her she must go to America to marry a man she’s never met. Her odyssey takes her from an ocean crossing, through Ellis Island, to Boston’s North End, with a lot of twists and surprises along the way.

While the story is fictional, it is inspired by the true experience of my grandmother, who was from Italy and lived through a similar situation. It also realistically represents the difficult road traveled by Italian immigrants in the early 20th century, a reality not much different from other ethnic groups before and since.

Click on any of the following…

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The Square Wheelers ride again!

If you’re reading this blog, you have at least a passing interest in Multiple Sclerosis. (Unless you’re one of those mercenaries who are simply “expanding your network”.) And if you have an interest in MS, you have far more than a passing interest in putting an end to it. (If not, you know nothing about MS.) If you want to end MS, you might be interested in contributing to the cause of ending it while supporting those who suffer from it.

That’s where I come in. 🙂

I’m riding in Bike MS: Ride the Vineyard in a couple of weeks. If you want to support me and thus support the fight against MS, please visit my donation page. And feel free to pass this request along to anyone you know who wants to be part of the solution.

That’s it, short and sweet. As Bartles and Jaymes once said, “Thank you for your support.

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A lasting image

[Yet another brief post to accommodate the craziness in my life this week: getting a book released and hosting the annual trivia fundraiser.]

I recently read a very good book by a very good writer, “Vanishing Grace” by Philip Yancey. Everything Yancey writes, I want to read; he’s that good. I won’t go into it in detail beyond highly recommending it.

What I want to mention is a passage from the book that asks a profound question. I reproduce it here for your reflection.

If you learned you were going blind, what final image would you want imprinted on your mind?

Something to think about.

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Why I hang out with people with MS

It’s way cool to hang out with people with MS. There’s no others like them.

You might think there are cooler people to hang out with. Wrong. Athletes? Nope. Movie stars, musicians, writers? Uh-uh. Politicians? You’re kidding, right?

You won’t meet a more courageous group. Few humans have to endure the crap they do, but they’re still out there getting it done. They still love and serve their families. They work out, go to countless doctor’s appointments, attend group meetings, research convoluted insurance regulations, organize and administer an arsenal of medications, and face hurdles only the disabled understand. News flash: The world isn’t designed to accommodate the needs of the disabled, no matter how much legislation is passed. It’s still a daily battle just to navigate a normal day.

Some steadfastly hold on to their trust in a loving, personal God in spite of experiencing pain, loss, and grief that would cause others to jettison their faith faster than you can turn the page of your Bible.

And you can learn a lot about others by spending time with folks who rely on scooters, wheelchairs, and walkers. You’ll see the breadth of humanity, from its worst to its best as you observe how they react to all that paraphernalia and other unusual behavior of the MS crowd. Some lend a hand while other avert their eyes. I’ve heard some even mock the disabled. (No, that couldn’t be, could it?)

They know this disease inside and out, better than most doctors and researchers. Those over-educated professionals may have their finger on the scientific pulse, but my friends know the impact of MS from first-hand experience. I invariably learn something in their company. They’re willing to share what they’ve been forced to learn the hard way. They dispense better advice than your average MD but ask for no deductible and require no insurance.

They’re empathetic listeners, available companions, and faithful friends. To paraphrase the mayor of Nelson in the movie “Roxanne“, “I would rather be with the people with MS than with the finest people in the world!”

Maybe that could be said better, but you get my point.

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Sweet Charity

In the spirit of making the most of my limited time and energy during this, the most harried stretch of months on my calendar in any given year, I present sweet, simple advice on international aid.

When people learn of my love for and involvement with Haiti, they invariably ask, “What can I do to help?” The most common (and expected) answer is, give. Give to those who are doing the best work there. My usual suspects are Partners in Health, Servants for Haiti, and the Apparent Project. Having first-hand experience with each of those organizations, I have no reluctance recommending them. Others, not so much.

If you’re looking for a simpler, faster, and sweeter way to help, here’s my suggestion:

Eat chocolate.

Huh? Yes, you read right. I’m suggesting you purchase and consume chocolate to help out Haitian friends. But not just any chocolate. This one:img_20170225_123427971

This bar of chocolate, manufactured right here in my beloved home state of Massachusetts but sold only in Whole Foods stores, is sourced directly from family owned farms in Haiti. Contrary to the title of this post, this isn’t really charity at all. This is a business transaction that helps everyone.

  1. It helps Haiti develop and grow independent business from their own natural resources.
  2. It helps our own economy by supporting a local business.
  3. You get lots of awesome antioxidants.
  4. 84% dark?! It doesn’t get much better than that.

There you have it. Eat a bar of chocolate once a week and you’re helping our neighbors in the sweetest way possible, giving them opportunity and a fair shake, not handouts.


 

For all my friends with MS—and even more for my friends without MS—Happy MS Awareness Month! Celebrate by talking to a friend with MS. See? Another easy way to help.

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Thoughts while a book simmers

Coming down to the end game of my next book, the blog drops in priority. Thus a list of disconnected thoughts that have kept me up nights. (I apologize in advance if any of these has appeared in another post either here or in my Scribbling blog. Blame it on the MS.)


I recently had a chance to try out one of those “3-D viewer” attachments for cell phones. Yup, everything was in 3-D. Last I checked, the world is still in 3-D. I’ll take that.

You know what credit card companies call those of us who are prudent enough to pay off our balances every month to avoid incurring interest? Deadbeats. Yup, they really do.

flatcyclistAs some of you are aware, I regularly promote the value of bicycling as great exercise to lose weight, improve balance, fight depression, and generally combat the effects of MS. In the interest of full disclosure, it must be noted that the activity does have its downsides. Look what happened to this poor guy.→ Probably run over by an errant steamroller. And he was even in the bike lane. Sad.

photo← Here’s a picture that pretty much sums up the attitude of a lot of people—employers, drivers, presidents—toward the disabled. Sadder.

Did you ever notice that, when you buy something from Amazon, they suggest you buy more of the same kind of item? That’s all well and good for books and DVD’s, but they do the same thing with every purchase. We bought a coffee maker not too long ago. They suggested: “Since you bought this coffee maker, wouldn’t you like to buy this one, too?” Why on earth would I want to buy a second coffee maker? Why not buy two refrigerators or ovens? You might also want a new shed in which to store all that superfluous stuff.

For those folks who deny the existence of absolutes: explain death.

I only learn about my car and my body when something goes wrong with them. In that sense, GM and MS are boons to our pool of knowledge.

Can you explain to me why it’s acceptable to advertise a product as addictive? Isn’t that a bad thing?

This is all you need to know about Donald Trump: His Trump “compensation” Tower  is 58 stories high. The number of the top floor is 68.


Be on the lookout for my new book, due in the next couple of months. Don’t worry, I’ll remind you again later. And again. And again. And again. And again. And again. Meanwhile, if your jonesing for something to read, there’s always “A Slippery Land“.

Also be on the lookout for two opportunities to help others:

  1. The 8th Annual Trivia Night and Silent Auction for Servants for Haiti.
  2. The 2017 MS Bike ride on Martha’s Vineyard. You can donate or contact me if you want to join the team, “Vineyard Square Wheelers”.

More info on those events coming to a blog near you!

[Why do these supposedly quick posts I write to give me more time to do other stuff always take at least as long as my normal posts? Sheesh!]

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