One of the toughest challenges in dealing with multiple sclerosis is the feeling of helplessness.

In other words, you want to help….but you can’t.

We are doing some home improvements around the My Odd Sock HQ.  Mostly hired help but partly do-it-yourself (to save moolah).

So the other day we had three very generous neighbors lending a hand while I stood there like a floor lamp.  (The light was reflecting off my ever-expanding forehead!)

It was a job I could do before MS.  A job I could do now with struggle.  But now is just a blow to the ego watching others complete the task.

My Odd Sock executive washroom

With MS, simple chores can be a challenge.

Just yesterday, I put three light bulbs in our new dining room light. 

Sounds easy enough, right?

Well, add a few myelin-eating plaques to your brain and changing a light bulb suddenly becomes an episode of The Three Stooges!

With nothing to lean on, combined with me having the balance of the stock market, I jammed my cane into my crotch and leaned like a tripod for additional support.  (Thankfully, I needn’t worry as my baby making days are long past!)

I got the light bulbs in—but it wasn’t easy.

Disclaimer–My Odd Sock does not recommend the “crotch-pod” position for this or ANY activity.

MS can be an extra difficult pill to swallow if you don’t like to ask for help.  I prefer to roll my own wheelchair (not be pushed), get the door, load & unload my mobility aids and pull myself up when I fall.  Graciously accepting a helpful hand has been a long chapter of humility for this stubborn bloke!

More construction zone

Unloading the groceries from the car, carrying a suitcase, emptying the dehumidifier or taking the garbage cans to the curb are some of the simple, everyday tasks that have become increasingly challenging (and sometimes forfeited) with MS as your wingman.

How have you dealt with this side of MS?

From one who likes to do things himself, how do you cope? 

Because I need your help.

We as MSers have heard all the innocent comments made by others.

We’re so good at accepting them, we just let them roll off our backs like rain on an umbrella.

But one comment made to me numerous times over the past year really twists my pit hair.

“So how are you enjoying retirement?”said a huggable elderly friend.  I understood the intent of her question and those made by others are not meant to harm.  But dang, that one stings like vinyl seats on a hot, sunny day!

Her harmless query floated from her crimson lipstick-caked lips–but it walloped me upside the head with the force of a Mike Tyson roundhouse.

Honestly I would have been more comfortable had she asked…”So how does it feel to have your body’s own immune system eating away at your myelin sheath?”

I could accept THAT one easier than questioning my “retirement!”

Happy retirement!

When I think of retirement, I picture an informal gathering in the lobby where I would be presented with a gold watch, a piece of cake and a smattering of applause.

“Retirement” is hanging with the other geezers on the shuffleboard court.

Comparing surgery scars.

Arguing who’s the best quarterback in the day.

And enjoying a 4:15 pm “early bird” dinner special!

Retirement?  Are you crazy lady?  I’m only 47 years old!

I’m too young to qualify for a membership to AARP!  Too young to let the belt of my coat hang out the car door.  Much too young for reruns of “Murder, She Wrote.”

Would rather eat tree bark.

And fiber?  Got plenty of fiber when I was in grade school gnawing on my pencils.

I’m too young yet to consider adding fiber to my diet.

“I asked about your retirement?” she said again.  Her voice bringing me back into the moment.

I smiled and responded “Sorry, I was just thinking of some things.”  Then added “I’m not really retired–I’m on disability.”

It’s getting easier handling that question, but it still throws me.

Have you been asked?  How do you handle it?

I realized this situation is familiar to some (but not all) of us with multiple sclerosis.  And it is a minute aspect in the grand scheme…but it means alot in personal pride, spirit & wellness.

My cane

Enjoy this encore presentation of My Odd Sock!    (Fancy talk, eh?) 

She wasn’t shy.  Nor intimidated.

She walked up to me and gingerly picked up my cane which was leaning against the table.

“Don’t touch that” her mother said.

It’s OK” I replied.  “You can play with it” I said to the little girl.

From that moment on, my new friend didn’t leave my side.

Her name was Airyanna.  (I thought she said “Ariel”, like the mermaid) 

She was three-years old.  Cute as a button and wise beyond her years.

I showed Airy a couple of very lame tricks with my cane (I admit my repertoire is rather weak!) and she clapped & squealed with approval.

“I try” she said.  And she performed my “tricks” to perfection.

I applauded for her…while thinking I really need to work on some new tricks.

Noticing her socks adorned with frogs, I said “I like your socks.  Can you jump like a frog?”

She squatted like a frog and jumped several times.  Then she quickly turned to me and said “Your turn!”

“Oh, I can’t…”                                                  

Hop like a frog, you Odd Sock

“Yes you can.”

“No I ca…”

“Yes you can.  Try it.”

So I got down like a frog and made several “leaps,” all without losing my balance or spasticity tightening my legs like a department store mannequin.

Airy clapped with approval and said “See I told you you could do it.”

The kid was right.  Three-year old luck I figured.

Next, she hooked my cane around a chair and jumped over it.

“Your turn” she said.                                      

Jump over the cane, goof

“No, I can’t” I said.

“Yes you can.”

“No I can’t.  I have MS—a degenerative disease of the nervous syste…”

She interrupted “Yes you can.  Try it.”

She would hear nothing of my explanation of MS.

Having a vertical leap that can be measured in millimeters, I picked up my right leg and threw it over the cane.  Then I dragged my left foot over to complete my “jump.”

Airy clapped.  “See I told you you could do it” she exclaimed.

Isn’t it medication time I thought to myself?

I asked her to pass my cane as I wanted to walk and throw a dirty plate into the garbage bin which was about 10 feet away.

“You don’t need this” she said referring to my walking stick.

“Yes I do–I can’t walk witho….”

“Yes you can.”

“No, remember my MS?  The chronic disease?  Myelin sheath…”

“Yes you can.  Try.”

So, slowly but surely.  One foot in front of the other.  My arms out like I was walking the high wire, I made my way to the trash can.

Again, Airy applauded.  “See, I told you!”

Yep she did.  She told me I could do lots of things that I thought this friggin disease had stolen from me.

Who would have known there was no need to consult medical specialists with their wall full of diplomas.  No need to take pills with names I couldn’t pronounce.  Or undergo examinations & treatments costing thousands of dollars.

I only needed to talk to my new little friend, Airyanna.

Thanks kid for giving me some much needed confidence and restoring a little faith & dignity in myself.  The short time we shared together was just a couple of hours, but the impact you made on me will stay with me forever.

Class dismissed.

I hope you enjoy it as much as I do. 

DATELINE:  My Odd Sock Laboratory 12/01/09

With startling new evidence, researchers at My Odd Sock Labs have uncovered up-close, never before seen footage of the debilitating disease widely known as multiple sclerosis.

Multiple Sclerosis, or MS, affects over 400,000 Americans and over 2.5 million people throughout the world.  MS is an autoimmune disease whereby the nerves of the brain and spinal cord are damaged by one’s own immune system.  In a process called demyelination, nerves are stripped of their protective & insulating covering (the myelin sheath) disrupting the flow of signals from the brain.

Research team analyzing scientific data.

My Odd Sock Labs is led by the acclaimed Dr. Ivan Von Hoof-N-Mouth.  Dr. Hoof-N-Mouth is assisted by his assistant, Assistant Manager Edith Dame Saggybags.  Also assisting in further assistant duties are Odd Sock, Captain Pink, Rabbit and Dale.

Water or Vodka?

Since late July, young, handsome My Odd Sock scientists have been working tirelessly to find the cause of this disease.

Scientific computations too complex to explain.

Although My Odd Sock Labs is still awaiting a grant to upgrade its aging computer system, this doesn’t deter the research team from their drive to find MS answers! 

Working in the My Odd Sock Laboratory

Powerful instruments have enabled scientists at My Odd Sock to look just beyond “squinting really hard” to uncover dramatic evidence of the demyelination process as it happens.

The Findings

In a rushed effort not to be out-scooped by the investigative reporters of TMZ, the research team at My Odd Sock offer these grainy, primitive images of multiple sclerosis.

In this picture, you will first notice MS’s resemblance to some sort of prehistoric bird.  Dinosaur-like appendages.  Over-sized head (like your author).  And a plated tail, possibly for bodily cooling.

Here you see the vicious carnage of MS tearing the myelin sheath from the spinal cord using razor-sharp teeth.  The MS shows no remorse.

Finally, a head-on image of MS happily devouring the myelin sheath, which eerily resembles Kraft cheese slices.  Let us pray the progression slows.

My Odd Sock sincerely hopes the preceeding graphic images offer you greater understanding of the debilitating disease of Multiple Sclerosis.