Yes, As A Matter Of Fact...You ARE Being "Watched"...

     Well slap my a$$ and call me paranoid!  I certainly have been called much worse...

    A few days ago, I wrote about the National MS Society contacting me via BRAINCHEESE with a request to add their redirect logo to my blog, sending people to the NMSS website.  As you may recall, I did as I was asked (note the somewhat looming logo at the bottom left hand side of the "All about me" section) and I ALSO sent a letter back to the anonymous marketer who sent ME the email in the first place.  I asked in my first paragraph exactly HOW the NMSS found my email and my blog...after all, my personal email address is NOT the BrainCheeseMS@aol.com addy...one could only find this email address directly on my blog.

     Well, today I received an email back from a DIFFERENT source at the NMSS, which I will post here.  There was nothing in the email requesting that I keep it confidential and/or not share it with the entire world...so, I am!  Here it is with my editorial comments interjected in pink...because PINK is at least a "purdy" color in my humble opinion (hint hint):

Dear Ms. (name deleted to protect the innocent!) 

 

Thanks for taking the time to respond to Ms. Lindly's request.  I have spoken to Joyce Nelson(President and CEO of the NMSS...for those of you not in "the loop" LOL) about your email and she asked that I please relay her apologies for not responding.  Like you said, she is very busy, and her lack of a response was an oversight. 

 

As to your question about how we came across your blog:  over the past year we have been focusing on how people utilize the Web and how we can better serve people with MS through the Internet and virtual communities.  While doing research, I came across your blog (I KNEW THE MS POLICE WERE WATCHING ME!!!) and decided to reach out to you about MS Awareness Week and the possibility of promoting it on your page. 

 

There is no denying that the Web is serving people with MS and their loved ones in ways we never imagined.  Both the amount of information available and the ease of interpersonal connection are unparalleled.  We are researching, exploring, and testing the waters and figuring out our "voice" on the Web.  For example, if you visit the Face of MS (http://webmail.aol.com/Shared/www.faceofms.org) (KIND OF A SNEAKY PLUG HERE I THINK...especially if the writer of this email had visited the faceofms site herself, she would have seen MY FACE OF MS with a brief story already written on the site?!?)

you will be able to see one of our first attempts at creating an online community.  In just one year we have had over 1,000 people impacted by MS post their stories, and the message board pages have grown exponentially.  In the coming year, you will see more work on our part to maximize the potential of the Web.  And I do hope you will be pleased with the results.  If you have any suggestions or input on places for us to research or visit online I welcome suggestions and input. (I THINK SHE WOULD ACCEPT SUGGESTIONS/INPUT FROM ANYONE WHO READS BRAINCHEESE, SO HAVE AT IT FOLKS!  BUT I BELIEVE IT'S TOO LATE TO GET THOSE LOGO COLORS VOTED OUT...MS. HAMMEL'S EMAIL ADDY IS  annie.hammel@nmss.org)
 

Ms. Nelson also wanted me to let you know that she is very interested in launching a blog of her own, as soon as she can be sure that her schedule will allow her (OK...I TAKE A TAD BIT OF OFFENSE HERE BECAUSE SHE ALLEGEDLY DIDN'T HAVE TIME TO ANSWER MY EMAIL...IT SEEMS A BIT UNLIKELY SHE'D HAVE TIME TO WRITE A BLOG!) to dedicate the time needed to make it authentic (WHAT EXACTLY DOES THE CHOICE OF THIS WORD HERE MEAN...AUTHENTIC?).  I hope that you will comment on it once it is up.

 

Thank you for writing and again, we (WE?  SPEAKING IN PLURALS ALWAYS RAISES MY ALARMS) apologize for the delay. 

 

 

Best,

Annie Hammel

 

    All righty then...here's what I think (cause I know you're holding your breath awaiting this BRAINFART!).  First of all, I wrote Ms. Nelson an email several months ago, received an email from Ms. Lindly this past week, sent a reply BACK to Ms. Lindly, and got an email from Ms. Hammel apologizing FOR Ms. Nelson!  I am beginning to think instead of representing Multiple Sclerosis, the NMSS is representing Multiple Personality Disorder (now called Dissociative Identity Disorder for you folks wondering if I really DO practice in the psychiatric field and use out of date diagnostic labels)!!  What is up with that?!?

 

     Second, (and speaking of psychiatric labels) I really WASN'T paranoid...BRAINCHEESE IS being "watched"!  LOL  Oh well...I guess if you write something in a public forum, repeatedly using the word Multiple Sclerosis (and the word "brainfart" LOL), GOOGLE is going to begin to recognize you!  And it is the price one pays when writing a blog/journal that is public...you can't limit anyone's access (not that I want to anyway) AND everyone IS entitled to their own opinion (gawd knows you ARE entitled to mine!), which is why I don't censor the comment section of this blog (unless someone writes something profane, derogatory toward someone else besides me, or is trying to "sell" something, like snake oil).

 

     I have received several private emails and also comments from a few of you regarding the NMSS...the general consensus is, the organization hasn't been as helpful to you as you would have liked or, once you became "disabled", the NMSS seemed to have no services to offer you.

 

     Well, now's your chance, folks!  I suggest you drop my friend Annie (OK, I'm being a bit snotty here because I'm still bitter about those logo colors LOL) an email and let her know your thoughts about the NMSS, the use of the Internet, and how YOU use this resource/growingcommunication tool for your benefit (or like me, your potential demise!)...feel free to tell her BRAINCHEESE sent ya!  annie.hammel@nmss.org 

 

And now for the "other side" of this dirty penny...because there are always two (or more) sides to every story.  I never expect ANYONE to do something for me unless I ask them too.  The same goes for large companies or organizations.  There is no way for an organization as big as the NMSS to read my little pee-brained mind and no way for them to cater entirely to my deranged wishes.  I am one fish in a big ocean (of gimpy, swimming fish!). 

 

     But when many fish swim together, it's called a "school"...traveling this way is much safer in numbers and offers other benefits, too.  Until we (you and me with MS) begin to focus our resources and energies into a stronger voice and travel in more organized "schools", NO ONE IS GOING TO GIVE US THE TIME OF DAY.  Let's face it...those Breast Cancer Awareness folks will continue to have the prime choices off the color wheel for their logos, and continue to have the largest marketing budget known to man, and continue to have more money (than God) available for research!  LOL  And we, those of us with MS, will continue to bitch about our disease, our lack of services and "awareness", while we rot away in our wheelchairs!!!

 

     The time is NOW, my friends, to get your voice heard...while you still have use of its function and the FREEDOM to speak...our one week of MS AWARENESS is drawing to a close.  Don't wait until next March to have your say...who knows, maybe by then, we will have stolen back all the cool colors for our logos and HAVE our dayum parade!  We need to be taking this to the streets anyway...