And the other foot-drops…

On the way to see my beloved neurologist last week I was thinking about my decision in December 2007 to use a walking stick- not an easy one to say the least.

For quite some time I had been tripping over nothing- though I never thought too much about it. I was branded a klutz at a very young age and always chocked it up the tendency to a flawed gene I had inherited.  So when concerned family members asked me if I had considered using a cane- I defensively claimed that if I needed a stick, my doctor would certainly have recommended it. And thus the phantom obstacles continued to block my path, with many a bloody knee and an embarrassed moment on NYC subway system.  I glossed over the absurdity of this all-to-frequent occurrence with a bit of performance art.  Brief moments of flight followed by random explanations announced to everyone and no one. Look that sidewalk is uneven! It’s these shoes! These practical rubber soled shoes tripped me.

And so it went unchecked until December of 2007 when the dizziness  arrived, an unwelcome guest who would never get the hint. What I hoped would be temporary became a new way of life. It was my husband’s inquiry that made me realize I would need to reconsider what I’ve assigned as my neurologist’s responsibility. Keith’s question has more power than my original family and it forced me to realize that my life requires another “foot” on the ground- a tripod if you will to help me navigate the concrete jungle as well as the bumpy green suburbs.

This need was reinforced when I visited with the vestibular neurologist who when testing my stability marveled that I would consider walking without a stick.  Placing his own stick near his desk reminding me of Joe Gideon’s exam as the doctor and patient both had cigarettes hanging off their lips hacking away during his physical— only less ironic. (see All That Jazz)

So, where was I? Oh yes- my doctor’s visit. After the routine performance of move this, touch this, walk like this, tell me this- my Dr. said,

“What are you using a cane for?”

“To compensate for my foot drop” I say.

“Well foot-drop doesn’t show in your reflex test or in your walking test.” he said

“But it does show when I’m kissing the sidewalk!” I hadn’t thought quickly enough to say.

So I’m leaving his office wondering why my Dr. would question my decision – one that was very difficult to make- and serves an important purpose in my life. Could he have said “Tell me, why have you decided to use a walking stick?”

I know, I know. Dr.s treat diseases and  symptoms while nurses treat  people. How is it that they can’t be housed in one person? Is there is no time to teach it in those advanced degrees?  And to think that I thought that my Dr. would have recommended it, if he felt I needed it. In addition to having this disease, and living with the constant symptoms and their physical/emotional effect- I have to be my own advocate. Any large company would view that role as a conflict of interests.

Hmmmh. I miss Linda Morgante more than ever.

Hardbound

In the last month or so a number of people have suggested that I write a book that ties together my inspirational essays from the blog. I’ve thought about how bringing in a narrative detailing my life of learning with a few educational thoughts thrown in that would provide a “stage”. But  I hadn’t really started seriously considering it until my husband pushed this article across our virtual table. (We are reading the Times electronically these days-an irony that doesn’t escape me! )  

So now I’ve added “write book” to my to-do list. And in addition to writing subconscious blog-entries, I find myself using a bolder type- and thinking about cover art. But first I will comb through this archive and select the more inspired entries.  As I’ve accumulated over 80 I realize the  magnitude of the task ahead of me.  And so, I look to my readers for feedback on which entries they find most meaningful. Let me know your selections and how to refer to you in my acknowledgements!

MS SoftServe on Facebook

So yesterday I finally listed MS SoftServe as a cause on FB. I’ve been meaning to do it for months but as my friend Bonita once said, “I’m my own worst editor!”  Finally I  just did it– in true Nike sentiment, but with fair trade practices! And what an incredible experience it has become. I’m touched by the supportive words and am empowered by reinforcement that this site is truly wanted and needed by many. And when it comes to getting the word out– Facebook is the Faberge Organic Shampoo “and they told two friends, and so on and so on” on steroids! (Did I just make two commercial references in one paragraph? Uhg!)

It’s nice to have this outlet to fundraise for this non-profit , but it is really much more than that. MSSS is a grass roots effort- exhausting my every free minute along with good graces of people who care on the production of the site and all the elements in it. Therefore, amassing a large group of people who care, will expand the available resources as well as some funds to pay them. To me there is nothing more meaningful that people who are impacted by Multiple Sclerosis participating in this site’s production. A true FUBU (for us by us) entity with less shirts!

I also want to take a moment here to say that I’ve connected on FaceBook to a number of individuals who I’ve met on other MS sites, like PLM.  I must say that the facebook experience is truly unique, almost organic. Its as if everyone you know is milling about in this cyberworld, periodically stating what they are up to or what they believe in- and from that many things grow. It ranges from silly to witty banter to life observations and sometimes very meaningful conversation. I’ve connected to peers with MS – from the blogs and chatrooms of support based sites, and learn who they are in addition to their MS. Its been tremendously rewarding.  So- I encourage you to friend me on Facebook. (Amy Gurowitz) And while your there, check out my cause!  I’ll look forward to meeting you!

(P.S.- The “cause” link can be accessed even if you aren’t remotely interested in facebook. Something for everyone!)

9th Grade Attention

In recent years I’ve learned a lot. I’ve learned to be an Instructional Designer. (what is that?) I’ve learned that my sister isn’t the only one in my family of origin who can write. I’ve learned that being an open person is easy and enjoyable in the digital age  (see my list of 26 things on Facebook) and I’ve learned that flattery can get you anywhere. Or can it?

I, along with many of my health blogging cohorts, was drawn in by the malignant flattery of WellSphere.com, and subsequently I am left wondering. Just how far have I evolved since highschool?

I sifted the letter from Dr. Geoff Ruttledge out of my spam filter, I’m so lucky I noticed it! It was meant to be~ He addressed me by name and said my writing was great. Me! My writing.. he likes MY writing! Okay wait, was he really talking to me or does he say that to all the girls? I reread the essay he commented on. It was pretty darn good. He likes it! He likes me. This is so cool!! Geoff! He’s so popular and he likes ME!!!

His letter was a few weeks old and I hoped my response would still count. Had he found someone else? Playing it cool, I asked questions so as not to come on too strong. What if he’s doesn’t really like me. I analyzed his word choice, reading his letter over and over. I told my friends, and asked them what they think. Does he really want to feature me on his site? Of course he does, why not? I’m good enough… During the two days that passed while I waited for his response I considered a wealth of possibilities.  Could this be it??? On a first look at the site I noted that it was free of advertising and seemed concise in its delivery. I could see where  Wellsphere as most information based sites, could use some counsel on how to present it for more effective intake. Hmmm… Maybe he will be interested in the MS SoftServe approach,  this could be my foray in to something big! A  direct avenue to bringing effective learning to the Internet! And my mind ran wild with possibilities. A nice house, white picket fence, 2.5 children….

While I waited for his response I considered how I might tell him my feelings. Checking my email every 2 minutes… What if my internet connection went down. He could be trying to email me right now, and I’m going to miss it! I checked with all my blogging BFFs. I know! I’ll email Lisa Emrich, she knows EVERYTHING!   She  responded really fast… she knows how important this stuff is. My fingers were shaking as I clicked to open her email…

…. and my heart sank. Apparently he does say that to all the girls. I was just another notch.  How was I so easily fooled?

Many health bloggers had received the same flattering emails I did, some of whom were  pulled in by the promise of exposure – though others saw through the ruse. As timing would have it- a few hours later, on the very day that I reached out to Lisa, this story broke.

I can’t help but to wonder. If I had been approached sooner or my spam filter wasn’t as thorough would I too have been taken in by this cheap flattery?  It’s a tough question, that makes me recoil a bit.

Hmmm. Maybe the highschool creeps were basic training for these real life scenarios.

Now that’s a spin I can appreciate!