Friday, October 6, 2006

Responses To The Jug Talk...

     I had no idea there were this many of you who stopped by “Cheese” for sad entertainment!  And I have to say, the response to yesterday’s post about Breast Cancer Awareness Month and the lack of MS Awareness Month, etc., was great…shocking, but great!


     My friend, HARKOO/Joyce in Maine, sent me an email with several wonderful insights (of course she’s currently on a round of Prednisone…don’t we ALL have profound insights when on that drug?!?  Just kidding, Joyce!).  On of the many things she mentioned was how the National MS Society depicts “The Face Of MS” in such a positive, uplifting tone…I had to think about this one for a moment.


     It IS true…if you read the pamphlets and the literature out there about MS or visit many of the websites, we are bombarded with smiling and happy faces as well as stories about how “MS can’t keep me down”.  And, on the one hand, they ARE inspiring…the stories give us that illusive “hope” MS ain’t so bad…we’re fighters…we can conquer all (with the right drugs, of course)…we’ve got spirit, yes we do.  We’ve got spirit, how ‘bout you?  Oops…I lapsed into an old football cheer from high school…


     But I will admit at least for myself, sometimes when I visit these sites or read the literature, I feel guilty I am not necessarily LIKE THOSE PEOPLE…those Super Gimps with MS.  I don’t always feel positive about my disease and I didn’t and couldn’t run a 26-mile marathon after being diagnosed so I could say, “MS won’t beat me down”.  MS has, on some days and months, kicked my arse into submission.


     I can’t claim I’m an “MS survivor” like the breast cancer survivors…I haven’t “licked” anything or “won” anything with my disease…it’s still here and it’s slowly (and more rapidly lately) been eating away at my brain.  There’s no major victory or finish line to cross…the best I can say is, “I’m surviving WITH MS”, and that’s not the same as being able to say, “I won!”  I’m just trying to hold my own as long as I can with as little disability as I can.


     So, in certain light, I can see the NMSS focus clearly and it’s need to be a cheerleader of sorts for all the Msers out there…we DO need a certain amount of inspiration.  But damn them for their subtle messages I pick up that somehow I’m “lacking”…that I’m not “hopeful” enough when I question my future…that MY face of MS isn’t one of a Super Gimp…that my disease is progressing and my life will NEVER be the same as it was a year ago or even 6 months ago.  Damn them for leaving me with the sense of guilt that I am not doing enough or trying hard enough or taking the right drugs or…Damn them that MY face of MS isn’t PRETTY right now!


     I have this idea for a charitable fundraiser event that might depict the “Face Of MS” in a more accurate light…or at least make ME feel better about MY MS.  I’d like to see my MS Race For A Cure have some realistic obstacles for it’s participants…and pledges would go higher for the more difficult obstacles!


     First, NO ONE would be allowed to simply run or walk in My Race For A Cure…choices would range from managing the 5K with a cane, walker, or manual wheelchair.  Depending on the participant’s level of pledge, “extras” would be added on.  There could be an eyepatch for only one-eyed vision or a blindfold just to make the idea of losing complete sight “interesting”.  And if they REALLY wanted to pledge some big bucks, I’d throw on a 50 pound, lead weight belt around the waist, too.


     For some people, even these items would not be enough for their money, so I might add a combo of the walker, lead belt, eye patch(s), and one roller skate.  For the seriously adventuresome, every block could include spinning the participant around in rapid circles until they were stumbling, THEN send them on their way again.  And how about some ankle boots that would keep the ankles from bending, making the walk more of a high stepping march event?  And I shouldn’t forget hooking up the electrical TENS unit to zap voltages of electricity down legs every few steps, should I?  Some participants might even want to be kept awake for 2-3 days prior to the event for simulated “fatigue factor”.  Oh, gosh…and what about “forced” bathroom breaks every few blocks, but…drum roll please…NO TOILETS IN SIGHT???


     Now THERE’S a true RACE FOR THE CURE FOR MS!!!  Do you think I should be contacting the NMSS or thebig pharmaceutical companies and start looking for sponsors??  Naw…I didn’t think so either…


crovira2 said...

I'd add some fun things I encounter every damn day.

Like schlepping slowly with a cane to a glass enclosed elevator and being invisible so that people NEVER WAIT but instead close the elevator door right as I reach the cage. (It not as if they COULDN'T SEE ME as I shake my fist at them and give them the finger as they go up and/or down. This has to happen twice per ride and twice a day. [And these people aren't handicapped. They're just fat and lazy!])

Then you have to be berated by some idiot who complains about you standing on the left hand side of the escalator. (I once shocked one of the yuppy bastards by asking him: "Well I can se that you're not blind, so which is it? Are you that inconsiderate, unfeeling, unsympathetic, or are you just plain s-t-u-p-i-d?")

Or having some little rat-bastard kid steal my seat as I'm going to sit down and then looking up smugly at me with a "Ha ha! I beat'cha!" expression on his little mug. (That greedy, selfish little prick had no idea how close he came to getting clubbed with my cane. I had to change subway cars or be arrested for murder.)

mdmhvonpa said...

Heh ... Super Gimps.  I think I have my halloween costume now.

As for the race ... ummm, do ppl with MS get to skip some of those requirements.  One thing you forgot is to have everyone wear a rubber suit 1 size too small, fill it with steel wool and fire ants.  Oh, and the lead weights are attached to One Foot Only.  For foot drop.  Fun times.

baitulos said...

CROVIRA2 & MDMHVONPA:  My bad!!!  I can see already just from your comments this entire race format will need to be a collaborative process with other MSers!  

And Mark:  MSers won't be the ones PARTICIPATING in the race...just reaping the benefits and probably a few hysterical laughs!!!


harkoo said...

   BEWARE!    I was flattered by Linda's mentioning the wise MS insights i had talked to her about--she is a nurse, however, and had the good sense to tell you all i am currently on a regime of PREDNISONE THERAPY. I  have felt glorious folks.   My mind has never been sharper.    When i turned on my computer this morning, there was a list of "order confirmations" from the 5 high-end fashion catalogues i ordered my winter wardrobe from yesterday--$750 worth of the finest quilted jackets, skirts, tailored tops and elegant cardigan sweaters.    I was so organized and competant as i handed out my Visa Card numbers to the salespeople.  My jokes made them laugh!  The problem is that i don't get out much as i use a walker and a w/c and the finances are tight.  My ex found a healthier wife several years ago. Sweatpants and turtlenecks are my style of dress.   I don't have a job so where did i get the idea i needed a 3/4 length wool skirt with large pockets?    The packages start arriving soon-----This time next week, i will be watching the Oprah Show in my living room in my new $250 quilted jacket!!!!   LOL

sonyasuzanne said...


I really do like the blindfold idea.  I'd help. Can you start the planning?  Who could we get to start the race? Carl Lewis?

Let me know your plans...I'm in on it!  =)  lololool

baitulos said...

HARKOO:  Who was it who once said, "Flattery will get you everywhere?"...Ah, my dear roid raging friend...I hope you save your emails for review AFTER your round of Prednisone...they are quite enlightening to those of us not on a chemical top of the world!  You might find them informative as well once off the steroid high...don't want the side effects, but I DO miss that initial "bounce" of steroids.  Suppose there are any roid junkies out there on the streets???


baitulos said...

SUZY:  You know we're just the sick type who would enjoy WATCHING this kind of Race For A Cure!!!  Sipping a beverage from the curb...


pjorpeej said...

That's a good start Bait but I'd like to add a couple of things. (I'm sure everyone will add *something*)  First I think they should have to do the 5k with major cramping/muscle spasms somewhere.  My personal choice would be all along their ribcage AND, though I'm not sure how we'd manage the effect, they should have one totally numb leg/foot.  Also, since that leg is totally not there unless it's being looked at, a set of stairs could be added for the entertainment value.

I'm glad someone else gets a bit pissy about the way MS is portrayed in these magazines.  I was starting to think I'd become a grumpy old lady.  (ok, I admit it... I have!)  

But honestly, it's really our own fault the general public has no idea what MS actually is since we're so busy putting on our happy faces that we fail to educate them on the realities.

To have some moron give you 2 flat tires for parking in a handicap spot because you're not wheelchair bound and "shouldn't be there" (never mind that you have the hang tag visible) is just one reaction to this lack of education... Sometimes our upper lip can be just a bit TOO stiff I think.


baitulos said...

PEEJ:  Excellent comment!!  I get very tired of hearing, "MS is an invisible disease"...I think because we hear that SO much, we become it.  I, for one, am tired of feeling invisible...I'm thinking of more an "in your face" campaign vs. "the face of" MS campaign!  


hagartyjj said...

Now this sounds more like the reality of the illness, however this is NOT what people want to hear about.  This is part of the problem.  Some days I think that all family members and friends should be forced to go through a program similar to this so that when they are helping they can better understand what we really go through rather than just trying to be sympathetic.  

baitulos said...

HAGARTYJJ:  I think the problem is, unless we KNOW something is permanent or lasting, it is very hard to create real understanding...that's the piece that is so difficult to convey and unable to simulate...the "lifetime" of the disease or any other.  If I know a pain for instance, is temporary, I am much better able to handle it versus not knowing if it will ever go away.  But all that said, I sure would like to be on the side lines for a REAL Race For The Cure for MS with obstacles...I'll bring the popcorn!!!


pjorpeej said...

Bait, I've watched for years as we all ask each other "how do you feel today" and none of us *EVER* tell the truth - not even to each other!  It's always "I'm fine thanks".  Well, BS, we're not fine and I think it's terrible that we somehow feel we have to lie about it.  

How many times have you sat through endless renditions of someone complaining bitterly because they've sprained their ankle playing ball or were tired because they stayed late at a party?  Why is it ok for them to complain but not us?  Granted you don't want to be whining about every little thing, but if someone asks how you're feeling I can't see where it would hurt to simply say "I'm not doing well today but maybe tomorrow will be better" or something.  It just makes no sense to me that we're always so quiet about our pain and exhaustion.

Anyway, enough ranting for today.  I'll bet you're sorry you asked.  lol


baitulos said...

PEEJ:  I'm never sorry to hear your comments, as they are the insights of a OGO (O' Great One)!!!  And you are right...faaak the crap about having to look so stoic and strong!  I'm with you, sister...not about whining, but about telling the truth.