Thursday, March 13, 2008

I'm Gonna Smoke A Turd In Hell For This...

I just know it...but I can't seem to STOP myself!


Maybe it's the fact it is MS Awareness Week and I have been inundated with letters from the MS Society? Or maybe Mercury has gone retrograde again...I don't know. I just feel extraordinarily "bitter" this week with all of these emails and letters from the "Society" asking for my money or to "join the movement" when I'm having great difficulty just WALKING with two canes! The only "movement" I have been successful with all week has been my bowels...


Today, I received yet ANOTHER fund-raiser letter from the "Society"...they got my name right THIS time at least...had to. It came snail mail to my house. They refer to me as "Ms. D----"...rather formal, if you ask me (but, you didn't ask me, so...). Guess I shouldn't really bitch about that...at least they didn't call me SUSAN this time!


The letter starts out letting me know it's MS Awareness Week (has this week actually been logged in somewhere in our National Registry and recognized by our government like a "true" week of awareness? Just wondering...). DUH...how could I (with MS) NOT already know that? Unless, of course, I've been living under a rock and/or HAVEN'T read any of the other gazillion mailers and emails already sent to me by the "Society" this past week. The letter (of course) asks me to "Join The Movement", AND offers me three ways in which I can do this:


1. "Display the enclosed MS static cling decal with (their) new logo on it with pride." (They let me know the decal is "easy to remove"...unlike my MS, however.)


2. "Fill out a short survey." AND, if I return it in the enclosed envelope, they will send me a 2008 MS Awareness Luggage AND Key tag! WooHoo!!! This got me excited...until I took a glance at the survey, which is sponsored (or as it says on the form, "made possible in part by support and educational grants") by SERONO, PFIZER, GENENTECH, BIOGEN IDEC, NOVARTIS, AND TEVA NEUROSCIENCE...every ONE of the big PHARMA are represented who make MS drugs. I think these drug companies could have passed the hat amongst each other and offered me a bit "bigger" prize than a luggage tag for filling out their survey! Like maybe a trip to the Bahama's or something? All expenses paid??? Gawd knows my insurance company has certainly paid them enough in the past 5 years for a trip to effing DISNEY at the very minimum! Phooey...bad taste in my mouth...must be the bile of a bitter woman rising.


3. "Give a gift." After all it is (my) "your generosity that helps people with MS move their lives forward". Hmmm...I didn't know my money was THAT powerful. Oh! And, if I can give a gift of $30.00 (or more), they will send me my "official 2008 MS Awareness Tote Bag--perfect for when (I'm) you're on the move!" It comes complete with the "Society's" (unaltered) logo stitched on the side and...you guessed it..."Join The Movement" embroidered under it. Of course, in small print, they let me know that this "offer applies to this appeal only, and expires June 2008, or as long as supplies last". I wonder just how many of these babies they'll have stacked in the store room after this "appeal" runs out?


On the back of the survey portion of the letter, there is a small graph at the bottom which tells me "We honor your giving!" and lets me know 78% of my gift will go to Programs/Education/Research, while 22% goes to Fundraising/Administration. Actually, compared to the major PHARMA companies, these percentages are pretty good...BIG PHARMA spends about 36% per year just on "marketing" alone, while spending literal MILLIONS on the salaries of their CEO's. And while I'm on THIS soap box, the pharmaceutical company's cries of "but your drugs cost so much because we have to spend so much on development and research" is a load of crap! What they spend on R & D (research and development) falls well short of the profit margins/percents each year and UNDER their marketing expenditures. Yeah...THERE'S my trip to DISNEY! But, as usual, I digress...


OK, now that the bile is settling in my gut (thanks in part to a large grant from the makers of PROTONIX, the GERD medicine I take religiously because I'm too stoopid to eat right, exercise, lose weight, and NOT have GERD!), I will say THIS in defense of the "Society":


Their website was very helpful to me when I was first diagnosed with MS...I had NO IDEA where to turn for information and "they" were there. Those first years of MS Walks and other fundraiser activities gave me some sort of active "club membership" and a sense I was not alone. I have attended a few of their educational programs done locally here in Seattle and, for the most part, they HAVE been that...educational. I can't entirely hold them in bad light for going to bed with BIG PHARMA...sometimes it's important to choose your friends wisely AND friends with deep pockets can be very useful in spreading a message...just as long as one is able to stay true to "their" message and be able to sleep each night with a clear conscience. And, the "Society" DOES do a great job at cheer leading...perhaps a bit on the sappy/overboard/rah rah you can do it/beat your MS side...but some folks need to believe that when they are first diagnosed. The rest of us eventually have accepted the fact our Pom Pom shaking and ability to do the splits WILL diminish with continued disability REGARDLESS of how "positive" or "negative" we view our MS...like all good things, denial fades over time.


COULD the "Society" do more for those of us with MS? You betcha. COULD I do more to promote MS Awareness? You betcha. WILL I continue to send the "Society" my left over change each year? You betcha. Why?


Because, as I've said before, I'm not looking for a free ride when it comes to my MS and I do believe SOMEBODY should take the reins and do what they can to figure out how to end this crappy disease...and it all boils down to that grand, American dollar...that, and having a disease the public CARES enough about to search longingly for a cure. Unfortunately, MS is NEVER going to be that disease...we don't die from it, unless MS eventually just sucks our will to live! We don't lose a breast from MS, we don't have erectile dysfunction (or at least not en mass...because well over 50% diagnosed ARE women!) from MS, we don't lose a testicle from MS, and we never, ever BEAT MS, so there's no "glory win"...no "whew, that was a close one", no survivor "hey look at me? I fought this with gut and sinew and now I'm _____-free" (fill in your favorite curable, but scary disease in the blank). The "Society" DOES still represent Multiple Sclerosis, knowing full good and well the PUBLIC doesn't...John Q. Public is too busy wearing pink ribbons and keeping our breasts intact...no time for a chronic disease like MS. And still, the "Society" pushes forward the message.


So, I'm off to fill out that check to the "Society"...in spite of my trashing of their lovely logo...because I NEED that tote bag! It will go well with my two canes...and I can certainly use it on my trip to DISNEY...made possible in part by support and educational grants from the School of Hard Knocks...

5 comments:

Shauna said...

I hear ya', sweetie. I, too, get frustrated with all the administrative costs my donation dollars go to. And to be fair, those costs aren't as big as some other charities.But like you, I continue to fight the good fight, even though I'll never win.
S.

Sharon said...

I know our society here talks about "for a small donation of at least $30.00 you can be a member of the society and get emails, quarterly magazine and whatever else (can't remember with my ms brain) I haven't seen a thing in 10 years. I would be happy with the clingy thingy. I had to go buy my own cure ms magnet. But I here what you are saying. It just gets frustrating at times.

Anne said...

Ditto.

Have myelin? said...

I still don't know what "services" they are providing. Guess since I am deaf (and have a basis for comparison) I expected more. Oh and deaf people don't have to walk, sing, sign or "work" for their services/information. It's always available.

Why is MS so different?

Kim Fabrizio said...

Hey, I didn't get a clingy thingy. No Fair! Linda, you missed your calling. You should take over for Leno!