Archive for April, 2010|Monthly archive page

How to Talk to Someone with MS

In MS, Multiple Sclerosis on April 28, 2010 at 11:59 pm

It’s amazing when you receive an MS diagnosis–friends and family rally to your side and you receive dozens of phone calls from people wishing you well. Of course, they have only the best intentions, but you may start to record your responses because all the conversations take the same course:

“How are you feeling?” says Aunt Sophie, your neighbor Angela, your college roommate Lisa.

“Not so great,” you blather, hating to lie by saying, “Fabulous! Like I can run a marathon!”

“Oh, I’m so sorry to hear that,” replies your Uncle Larry, your book club leader Jenn, your cousin Steve.

“Thank you,” you say–and you really mean it.

“Well, you’ve just got to stay positive,” says the chorus of reassurance.

“Yes, I know.”

“When does the doctor think you’ll get better?”

“MS takes a different course for everyone, so he can’t say.”

“Well, you’ve just got to stay positive,” they repeat.

“Yes, I know.”

“Hey, I have a neighbor/niece/in-law/lady at the dry cleaner/friend-of-a-friend’s sister’s cousin’s ex-wife who has MS and she’s doing great. You’d never know she had it. And she’s willing to talk to you.”

“Thank you, I’ll think about that,” you say, noting this is the 27th offer you’ve received to talk about MS.

So let’s stop the conversation there.

Folks, the person with newly diagnosed MS wants to talk about anything but MS. Sure, it’s helpful to have an MS mentor–and chances are, your MS’er has already reached out to someone. But the MS patient doesn’t want to speak to every person that comes forward. A small support group or one confidant is probably enough. We’re not keen on calling Phoebe’s French Cleaners and asking for Millie to shoot the breeze while she starches collars.

We have MS. That’s a fact.

But we also have a rich, full lives: occupations, spouses, children, pets, religions, hobbies, adventures, loves, dreams.

We’d like to talk about life. Not MS. Because MS does not define us.

So if you have a family member or friend recently diagnosed with MS, take note. Please don’t call once a week with the standard, “How are you feeling?” routine. Call just to talk.

It’s great to hear your voice.


Phun at Physical Therapy

In Humor, MS, Multiple Sclerosis, Physical Therapy, PT on April 25, 2010 at 8:53 pm

Ah, PT. It stands for Physical Therapy, but in my world, it’s Personal Training because I consider myself an athlete training for victory rather than an MS patient gaining strength to walk. So from here on in, we’ll refer to my therapist as my trainer. And I suggest you do the same. Got it?

OK, so onto my second visit with the handsome trainer. At the first visit he evaluated me, so now the real work begins. He escorts me on his arm and I feel like I’m going to the prom–a prom where Nike shorts and a sweat-wicking T-shirt are appropriate attire.

He explains that MS patients have a fixed reservoir or pool of energy for a day. Since he isn’t familiar with my energy threshold, he’ll take it easy on me. I tell him my reservoir is a baby pool, the plastic kind you fill with a hose in the backyard. We laugh. And then he takes the joke further, asking me if it’s the size of a teacup, and I say, maybe not, I think it’s the puddle in the saucer.

I ride the exercise bike for three minutes and I still have some oomph, so he tells me to go for five. A few feet in front of me is an elderly lady I’ve seen before, stretching a giant rubber band.

The five minutes are up and my prom date/trainer escorts me to the exercise table. I pass the woman and say hello. She practially screams, “Lookin’ good! Lookin’ good!” I feel good.

We reach the table and I hear another trainer ask the woman, “Do you want me to turn the TV toward you? Turn up the volume?”

“No, dear,” she replies. “I’m not watching it. I’m blind.”

I laugh so hard I nearly pee the exercise table with a pool of energy.

Carol Burnett and the Three Gratefuls

In MS, Multiple Sclerosis on April 19, 2010 at 8:03 pm

Anyone else grow up in the 70’s on a steady diet of TV dinners and TV? Swanson’s and Carol Burnett, that’s the good stuff.

While digging into my salisbury steak all those years ago, I witnessed one of the most hilarious moments in TV history: the Went with the Wind spoof. Carol’s Starlett O’Hara descended the stairway in a velvet curtain dress, brass rod and gold tassels still attached. (“I saw it in the window and just couldn’t resist it.”) Starlett mustered up all her courage and held onto the railing, each step full of grace–as much grace as one can have while wearing window adornments. A bit imbalanced by the cumersome dress, she nonetheless reached Ratt Butler with her pride intact and her man overcome with emotion.

That’s me and the stairs these days. Sans the green velvet. And Harvey Korman. But there’s plenty of laughs–coming from me. How funny that such a simple act as going downstairs has morhped into a major production.

I stare down the 14 steps to my family waiting patiently below. My body feels heavy even though I don’t have a curtain strapped across my shoulders, and I muster up all my courage to descend with pride. But I need to hold onto the railing with both hands, and I wobble so much I sometimes resort to taking a bumpy ride to the bottom on my butt instead.

Graceful? Not quite. But it gets the job done. And there’s good fortune waiting for me in the foyer–a family ready for Mommy to go out instead of linger in bed.

The past few months have been rough ones, getting the MS diagnosis and then slowly letting the reality seep in. The daily shots remind me this is something I’ll have to deal with for the rest of my life. If that wasn’t enough, I’ve got two feet that feel trapped in blocks of ice. I pray that global warming is real.

Recalling Carol’s variety show always lifted my spirits. So this week I read Carol Burnett’s new autobiography This Time Together: Laughter and Reflection and learned that every night she counts her “three gratefuls”–three things for which she is thankful.

I’m alive. One grateful.

I have a healthy and supportive family. Two gratefuls.

I’ve got my sense of humor intact. Three gratefuls.

If I could add a fourth today, it would be for Carol.

And salisbury steak.

(Sorry, I skipped lunch and I’m hungry!)

The Extraordinary Life

In MS, Multiple Sclerosis on April 13, 2010 at 2:54 pm

Did you ever feel as though your life were meant to be extraordinary?

That something special was going to happen in your future? A belief that nags at you, somewhere beneath the skin, someplace you can’t scratch?

As a child, you blew dandelions seeds across the lawn, watching one puff rise higher than the others, hoping it was the seed that would carry your wish to whomever made these things come true, never knowing it sprouted, days later, as another dandelion in the backyard.

Maybe you dreamed of becoming a doctor. Or a lawyer. Or maybe those were never your dreams at all, forced upon you by parents trapped in assembly line jobs.

A movie star, perhaps? Was that what you wanted? Singer? Musician? Winning awards? Topping the charts?

Did you want to be a CEO? Invent something the world could not live without?

Perhaps, over time, your wants became simpler, like a good cup of coffee every morning with your spouse, predictable, comfortable in your well-worn slippers. A house with a fireplace. Now that would be cozy. An outdoor pool. Plus someone to take care of it. A nice car, but not a minivan. Two or three children with scrubbed-clean faces and good grades.

Yes, you slathered Calamine lotion on your skin and spread Scott’s turf builder on the grass.

Maybe ordinary could be extraordinary to you.

Or maybe you’re like me. You thought you would do something extraordinary or be something extraordinary, but you never knew just what extraordinary was. It had no definition. It was floating out there, somewhere, waiting to be caught.

But now I know.

I have Multiple Sclerosis.

So this is how it’s going to be, huh, life? Now I have to be extraordinarily brave and strong to overcome a lifelong, incurable disease? Great. This wasn’t the extraordinary that I had been hoping for.

But if you’re gonna give me a lawn full of dandelions, life, then watch me clip ’em and stick ’em in water. They’ll keep growing back, I know, but hell, I’ve got a cupboard full of crystal vases that need filling.