April 1, 2015
Today, I am delighted to welcome Auntie A.Ellis, who joins us as our special guest.
For those who don’t know Auntie A.Ellis, she dishes out advice to anyone and everyone who dares to ask and is gaining a reputation for her unique perspective on living with ALS. Auntie A.Ellis throws being PC (Politically Correct) right out the window and lives by the motto:
“Ya gotta laugh, baby, ya gotta laugh!”
CAUTION! Before proceeding, readers must acknowledge that they are aware of today’s date (April 1, 2015) and all the implications that may be attributed to it.
Footlights & Headlights
DEAR AUNTIE A.ELLIS:
My ALS has progressed to include the symptoms of weak legs, stiff muscles and now, a gravely-sounding voice. It’s getting harder for others to understand what I’m trying to say. I need a job and wonder, who will hire me?
DEAR JOBLESS, MY JELLY-BELLY-BESN:
The key to success in any job search is taking what you think is a disadvantage and turn it into an asset. Think big, think out of the box, think Hollywood!
For instance, Zombie movies are still the rage, and who rocks that ‘stiff- zombie-shuffle’ better than us PALS (People with ALS)? Besides, there’s usually a Sci-Fi in production and I know for a fact they always need townsfolk who can collapse on cue. How about playing the robot that saves all human kind? Not bad, eh? Wait, there’s more!
If not Hollywood, then how about Broadway? I just learned that The Wiz, (the hit 1970s stage reinvention of The Wizard of Oz is coming to Broadway next year under the direction of those masters of contortion; Cirque du Soleil. Since cast members have not been announced you may still have time to audition for the role of the ever-floppy Scarecrow or, my personal favorite the Tin Man. Why let mere acrobats get credit for what we PALS do, oh so naturally?
If sticking closer to home is your desire, go no further than your local hamburger joint. Walk right in and tell ‘em you’re perfect as, "The order-taker for the drive-through lane." Heck, just trying to get them to understand what you just said should convince them that you possess the perfect garbled voice to squawk out from the drive-through speakers! Think of the laughs you’ll share with customers pulling up to the pick-up window.
Go big my friend. Go outrageous and be successful!
DEAR AUNTIE A.ELLIS:
My best friend has just been diagnosed with ALS. To help me better understand how I can help her, I thought I should I watch that new Hillary Swank movie, “You’re Not You.” What do you think I should do?
Signed, Best Friends to the End
DEAR BEST, MY BESTIE:
You've just pushed one of Auntie’s buttons! Hillary Swank is one great actress and she did stellar work playing the role of Kate, a person living with ALS. But honey, her Kate had one bad-attitude! Talk about guilt, self-blame and an apathetic outlook! Of course, who could blame her? I’d throw myself down the stairs too if I had that schmuck of a husband in addition to those sad-sack parents and friends! While we’re at it, let’s fire her doctor as well! Where I ask, were all those smiling, helpful ALS and MDA folks that are supposed to show up during medical appointments? They do home visits too, you know.
I know, I know, the movie was really all about the other character: “Bec,” and how her friendship with Kate blossoms and they both grow emotionally. But, can we have just a little reality here? Why didn’t I see any handicap grab bars, ramps or accessible kitchen and bathroom devices scattered around? Kate and her family seemed well-off, surely they could afford to give the poor girl more than one rickety old walker. And exactly HOW did she manage to go up and down those stairs, any-who?
So, dear “Bestie,” you certainly can guess the number of stars I gave that particular movie! But all is not lost. By all means, go see it, take notes and learn - - what not to do!
Be a true friend; show up, call, invite out, email, hug and laugh together. And, if your PALS shows any signs of a faltering attitude, introduce her/him to the “ALS and Wellness Blog” and turn their frown upside-down.
DEAR AUNTIE A.ELLIS:
I have ALS and am in a wheelchair. My problem is about our family friend Don, who does something every time we see each other that just bugs the heck out of me. He’ll come up to me full of smiles and say, “Why you don’t look sick at all!” I know he’s just trying to make me feel better. But I’m tired of saying “Thank you,” he doesn't get that it’s how I feel on the inside that matters. What should I do?
Signed, Feeling Inside-Out
DEAR INSIDE, MY PEONY:
Sounds like you need a good conversation opener. In the spirit of the 1975 hit by the O’ Jays, “Give the People What They Want,” give him the sickie he craves. Next time you see old Don coming your way quickly slump down in your chair while scrunching up your face in your best impression of I-got-a-gas-bubble-stuck. Dangle one arm over the side if you can manage. Then, when he’s real close and wondering if, “You don’t look sick at all,” is still applicable...you, suddenly pop up and holler,
After Don regains consciousness and you've both have had a good laugh, give him a big smile and tell Don you’d love to explain what ALS really is. Have the conversation. Help one more person to understand ALS.
And remember my motto:
“Ya gotta laugh baby, ya gotta laugh!” Love, Auntie A.Ellis
ALS and Wellness Blogger