Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)


A-Z promising quotes: Zest

Multiple sclerosis gives a person pause … and a definite cause for concern. Just this morning, I was zipping through a couple of discussion threads in an MS group on a popular social networking site and found a few folks expressing their worries about possible future MS symptoms they might one day face.

“What if I can no longer walk in 5, 10, or 20 years?” one person asked.

“I dread the possibility of losing my vision,” said another.

“Will I need a wheelchair someday?” a third posted.

Clearly, no one knows the answers to these questions. Even the top neurological experts have no clue what path MS will take in any individual from day to day, month to month, or year to year.

But that’s sort of the mystery of MS.

And it might just be the key to what makes so many MSers such a curious and intriguing and spunky and zesty and (Dare I say it?) inspiring lot. Those who choose to fight simply stand their ground (even if they are sitting down) and make the most of every single day that they can.

I wanna be like that. I want zest, even with MS.

I’d like to adopt this thought-provoking quotation from British author J.R.R. Tolkein (1892-1973), perhaps best known for The Hobbit and The Lord of the Rings:

“The future, good or ill, was not forgotten, but ceased to have any power over the present. Health and hope grew strong in them, and they were content with each good day as it came, taking pleasure in every meal, and in every word and song.”

That sounds almost like a benediction, doesn’t it?

May health and hope grow strong in all of us, so that we can be content with each good day and take pleasure in the blessings that come. Maybe such an attitude can make the less-than-good or totally terrible MS days more bearable as well.
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A-Z promising quotes: Yesterday

If your life has been touched by multiple sclerosis or any chronic medical condition, either personally or through a loved one, do you ever look back longingly on the days before that happened?

I surely have. I’ve often been tempted to miss the years when my vision and limbs were strong, my balance was sure, and my energy seemed never to run out. Those days are mostly gone.

Sure, like most MSers, I have good days and not-so-good days, particularly from a physical standpoint. That sort of goes with the territory with the dreaded demyelination.

But maybe memories are treasures that may still be savored, even long after the moments they recall have fled. Perhaps it is possible to recapture a smile over a sports victory, a personal achievement, or a fabulous occasion that might have proved too much for us, if it happened now instead.

Maybe we can agree, at least for a moment, with the beloved children’s book author and illustrator Theodor Seuss Geisel (1904-1991), better known as Dr. Seuss:

“Don’t cry because it’s over. Smile because it happened.”

And, hey. It isn’t over yet. Not even nearly.
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A-Z promising quotes: eXhaustion

Multiple sclerosis brings its own flavor of fatigue. In fact, the MS fatigue may be in a league all its own. It often strikes suddenly, without warning, and can wholly destroy any activities, plans, or goals for the day. Once it hits, it’s time out – or even lights out – until it passes.

This level of exhaustion can be devastating. MSers frequently liken it to “the wall” marathoners describe. We may go from full speed to full stop in a heartbeat.

This sudden sapping of vim and vigor might tax our emotions as well. We may feel angry, irritated, aggravated, isolated, or discouraged. Mostly, these feelings are directed at the MS MonSter and our own bodies’ refusal to cooperate with our intentions.

Kurt Vonnegut (1922-2007), American author (Cat's Cradle and Slaughterhouse-Five), made this observation about exhaustion the frustration that often accompanies it.

“Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward.”

Gee, what if a person laughs and cries at the same time?

In severe cases, physicians call such a phenomenon Pseudobulbar Affect (PBA), and it can be a symptom of multiple sclerosis.

On the other hand, laughing till we cry or crying till we laugh can just be utter punchiness – and a whole new level of exhaustion.

I think I need a nap now. (What’s a nap?)
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A-Z promising quotes: Why

“Why me?”

Was there ever a person living with multiple sclerosis (or any other chronic medical condition) that did not ask this question at least once?

“What did I do to deserve this?”

This question begs a theological discussion way too deep and lengthy for a blog post. Big minds have pondered such issues for millennia. I am fairly certain we’re not gonna solve it right here and now.

But we’re probably still going to ask.

C.S. Lewis (1898-1063), British author (The Chronicles of Narnia and Mere Christianity) and theologian, said this about the “Why me?” question.

“The real problem is not why some pious, humble, believing people suffer, but why some do not.”

So maybe we are asking the wrong question, after all.

A Christian pastor I know and respect thinks often and earnestly about this sort of thing. When people casually ask him, “How are you?” he answers, “Better than I deserve.”

I just might have to borrow that response.

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A-Z promising quotes: Value

Life can be frustrating with multiple sclerosis. OK, we get that. It can feel futile sometimes, especially when our bodies fail us. How about when our memories lapse, our attention wanders, or our emotions run amok?

Hey, that stuff all happens with MS – or with a host of other conditions people face. Life can be harrowing and hard, and we may find ourselves questioning whether our own lives matter.

But they do.

“A human life is a story told by God.”

That’s a pretty profound statement, especially coming from a beloved storyteller like Danish fairy tale writer Hans Christian Andersen (1805-1875). He’s the one credited with creating “The Emperor’s New Clothes,” “The Little Mermaid,” “The Snow Queen,” “The Princess and the Pea,”  “The Steadfast Tin Soldier,” “Thumbelina,”  “The Ugly Duckling,” and tons of other fairy tales.

If God is telling my life story, then it must have meaning. It’s real, not fiction or fantasy. It has a purpose. And there are still a few more pages to turn.

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