Top Ten things to do while in the MRI tube

If you have MS, you’ve spent more than your fair share of time buried in an MRI machine. It’s a little known fact that the MRI was invented by some obscure cleric during the Inquisition to extract confessions from suspected heretics. It wasn’t until the late 20th century that scientists looking for new papers to publish in scientific journals discovered they could use it to look at the human brain and pretend they knew what they were seeing. (Word is that it’s still used as a torture device by some nonprofit hospitals to compel deadbeat patients to pay their overdue bills.)

Being more than mildly prone to claustrophobia, the prospect of my first MRI was about as welcome as a colonoscopy prep. For my maiden voyage in the tube, I begged for some kind of assistance. I was thinking, “Hit me upside the head with a 7-iron. I’d rather sleep through the whole thing and wake up with a nasty headache than endure a preview of the grave.” But they gave me a Prozac and that did the trick.

Turns out it wasn’t as bad as I’d dreaded. Since that initial episode, a cloth across my eyes and a vivid imagination has sufficed to get me through the trial. The only problem left was what to do with that hour or two lying there in the dark, immobile. Perhaps you have the same problem. If so, I present you with my top ten list of things to do while lying prone in an MRI:

  1. Think of all the people you’d like to cram into an MRI tube, possibly concurrently.
  2. Play head games with the MRI operator. For example, keep squeezing the little ball he gave you and, when he comes running, tell him you didn’t squeeze it. Guess how many times you’ll have to do it before he stops coming to check on you. Another fun trick: Keep yelling, “Get them out of here! Get them out of here!”
  3. Try to remember all the side effects of the DMD you’re taking.
  4. Make music from those loud, unnerving, filling-rattling MRI sounds. Half an hour of  BZZAAAHHBZZAAAHHBZZAAAHHBZZAAAHHBZZAAAHHBZZAAAHHBZZAAAHH ZZORRDZZORRDZZORRDZZORRDZZORRDZZORRDZZORRDZZORRDZZORRD WAPWAPWAPWAPWAPWAPWAPWAPWAPWAPWAPWAPWAPWAPWAP EHGDEHGDEHGDEHGDEHGDEHGDEHGDEHGDEHGDEHGDEHGDEHGDEHGD will give you lots of opportunities to come up with a top ten tune.
  5. Come up with meaningful ways to spell those sounds. (q.v. my attempts above)
  6. Bring a friend for backgammon.
  7. Pray. You’ll never find a more convenient or appropriate time for it.
  8. Imagine you’re lying on a beach (or other relaxing, desirable location) that just happens to have a sonic background of BZZAAAHHBZZAAAHHBZZAAAHH.
  9. Count your blessings. Think of reasons to be grateful. This has the added benefit of being therapeutic so maybe you won’t have to spend so much time in the MRI.
  10. Write a top ten list.

You can thank me later. Or add your own ideas in a comment.

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The Voice of God

Have you ever heard some spiritual superstar talk about how he or she “heard from God”? My hackles tend to rise immediately upon hearing such talk, invariably in the form of something like, “God told me I should do this”. Worse, “God told me you should do this.”

I don’t know about you, but I’m not that conversant with God that He’s regularly telling me what to do, never mind what others should be doing. I keep up my side of the conversation and look for His response any way and anywhere I can: through friends, His word, nature, and circumstances, for instance. Have you ever directly heard that “still small voice” in your head? I haven’t.

Except once.

Yes, I think I heard the silent voice of God in my head. I’m going to share it here in hopes that it will be of some help and encouragement to my friends with MS.

I was going through a particularly dark time in my life, which was causing me to be cast down in my spirit. (This was not related to MS as far as I know but, as with everything MS, you never know for sure.) Anyway, I was praying, looking for some help to get out of the doldrums, when suddenly, out of “nowhere”, words simply appeared in my head as if they were beamed down from the mother ship or, maybe more appropriately, the Father Ship. The words were:

Philippians 2:4

Huh? Where did that come from? I knew it was a Bible reference but I had no idea what it said. (This was a long time ago; since then that verse has been indelibly etched on my heart.) Being a dutiful Christian and, more honestly, being desperate for help, I looked it up. Here’s what it says:

Let each of you look not only to his own interests, but also to the interests of others.

At first glance, it appeared to have nothing to do with my depressive state. Maybe God put the wrong Zip code on that message and it was meant for someone else. It could be something intended for another circumstance and it arrived too late or too early to be applicable to my current condition.

Or maybe I was imagining it all.

On further consideration, I realized it couldn’t have been more appropriate. I’d been wallowing in my own set of woes, ignoring the needs of others God had put in my path. That’s a perfect recipe for the depression and despair I was experiencing. Getting outside of oneself is the solution to so much that mentally and emotionally ails us.

As the estimable but long-lamented psychologist, Dr. David Rintell has pointed out many times, we can build our resilience by “looking to the interests of others.” Specifically, he says:

Give! Giving to others, in addition to the benefits to those we help, benefits the helper in a number of ways.  Research has shown that giving to others is an effective antidepressant, and it’s a great way to build new social connections.

For those of us with MS, the temptation to pull back inside ourselves, to hide and obsess over our conditions, to look only to our own interests—in short, to be selfish—is great. But it’s also dangerous. Avoid that temptation at all costs.

God told me you should. 🙂

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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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