eXperience: Describing multiple sclerosis from A to Z

Multiple sclerosis brings a host of strange and soul-stretching experiences, from the initial diagnosis through every symptomatic episode. Sometimes we struggle to accept and cope and manage whatever the MS MonSter throws at us. Occasionally we even learn from such circumstances.

MS is eXperience.

Note: I understand that “experience” doesn’t exactly start with an “X.” But we’re getting to the end of the April A to Z Challenge, and my brain is a little exhausted. Hey, I have a doctor’s excuse for that – just like any MSer.

Every MS first can feel like a whopper, especially when we don’t recognize or understand what is happening to us. A crippling fatigue, dizziness, inability to walk, sudden blindness, and other MS manifestations can throw us for a loop. If these symptoms subside, we might chalk them up to experience. Next time, we can sort of guess what’s going on. Power over the MS MonSter can take practice.

Each MS exacerbation becomes an exhausting experience in and of itself. That’s no exaggeration. No exam can tell us how long the relapse or flare-up will last. It’s exceedingly exasperating. And when it ends, we can be exceptionally excited or even exuberant. It’s uncanny, but it’s real.

When the cloud lifts, we might think, “Gee, is this how the rest of the world feels all the time?”

Not the rest of the world. Just people who don’t live with chronic illnesses. Not the exceptions like us, who are all gaining experience.

“People grow through experience, if they meet life honestly and courageously,” said American First Lady Eleanor Roosevelt (1884-1962). “This is how character is built.”

Brick by brick, flare-up by flare-up, and symptom by symptom. And yes, we are most certainly characters. And, as Forrest Gump said, “That’s all I have to say about that.”

Image/s:

April A to Z Challenge 2016 logo – fair use

 Adapted from public domain artwork

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Sometimes feeling overwhelmed ain't half bad

Standing strong with multiple sclerosis can be a tall order. In fact, sometimes standing up at all with MS is tough to manage. But maybe that’s when we find out how tall and tough we really are.

British essayist, poet, and playwright T.S. Eliot (1888-1965), who happened to win the Nobel Prize in Literature in 1948, likely didn’t face MS, but he certainly endured challenges in his life. Eliot may be best remembered as the author of The Love Song of J.Alfred Prufrock, Murder in the Cathedral, and The Waste Land.

Here’s a thought-provoking quotation from T.S. Eliot that seems to fit life with MS to a tee.

"If you aren't in over your head, how do you know how tall you are?"

Maybe Eliot was talking about treading water, not living with MS. But sometimes it sort of feels like the same thing. How many MSers have dreamed big dreams and set ambitious goals for ourselves, only to find we are barely coping with mundane life when the MS MonSters knocks us flat for a while?

Sometimes, the seemingly smallest day-to-day victories over MS challenges feel like grander triumphs than the major mountains we have climbed or milestones we have met. Sure, that decades-old diploma, last year’s career promotion, or last week’s honorary award are meaningful indeed. But getting out of bed and simply showing up during an MS exacerbation may merit even greater self-satisfaction.

When MS seeks to sideline us with numbness, vertigo, extreme fatigue, sensory overload, vision losses, and other staggering symptoms, we may feel overwhelmed. Sure, we do. But we slug right back, as best as we can.

And we grow.

I’m not a tall person. No one would ever describe me as statuesque. In fact, I have endured more than my share of short person jokes. Perhaps that’s another reason I love this quotation from T.S. Eliot. When I stand up to the MS MonSter, I might gain stature, at least figuratively. And I know plenty of other MSers who can claim the same – even more so.

Maybe some of us are taller than we think we are.

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Created by this user,

including adapted public domain artwork

Off to a running start

I’m in this for the long run. That’s true of any MS warrior. Anyone who battles the beast every day knows the grueling warfare, the seemingly uphill battle, and the nearly constant challenges of living with multiple sclerosis. And we celebrate the victories we enjoy – whether it’s walking to the car or running 10 miles, buttoning a blouse or biking around the block. Wins are wins, so we roar heartily when we earn ‘em.

In an earlier post, I shared about the 1,000 Mile Challenge to Hike/Walk/Run 1,000 Miles (running from June 6, 2015 to June 5, 2016). I joined and started logging the miles. Here are my results for the first three days:

Yes, this pie chart looks pretty much like a pumpkin.

So do I (at this point), but that’s gonna change, as I measure more miles. I’m counting on it. I want to whittle my waistline, while marching faster than the MS MonSter. Although I am a tortoise in sneakers, I am grateful to be vertical these days. And I am running faster than all of the horn honkers and caterwaulers in cars, who gawk and grin and mock and swerve on the roadways.

This quotation from actor Johnny Depp (Alice in Wonderland, Charlie and the Chocolate Factory,  Edward Scissorhands, The Lone Ranger, Pirates of the Caribbean, Public Enemies, Sleepy Hollow,  Sweeney Todd: The Demon Barber Of Fleet Street) pretty much spells out the MS runner’s mentality, I think.

I like the challenge of trying different things and wondering whether it's going to work or whether I'm going to fall flat on my face.

Win or wobble, I'm on it.

Whether I feel like it or not, I’m gonna keep running … or jogging … or plodding. Even if I have to stop and walk a bit, I am thankful to be up and moving. And I only have 987.2 miles to go.

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Created by this user

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