Can Amy Come Out to Play?

Originally posted on MS~LOL: Multiple Sclerosis a Life Of Learning:

hmmm… not so much

It’s so odd when the earth offers so little stability. Gravity is something that most people appreciate but take for granted. Unless you are watching Chris Hadfield performing Space Oddity on the International Space Station (not watching it on the space station, watching it on YouTube ). But for some of us standing on the ground and does not feel grounded; for some of us, the gravitational pull is enemy # 1 and for us, just leaving the house can be really frightening. If you’ve never dealt with standing as an extreme-sport you can’t begin to imagine how scary it is. Some people living with MS know what I’m talking about. -And just like so many realities of life with Multiple Sclerosis, there’s no way to get it, unless you get it. And I’ve got(ten) it for 26+ years to date. But my hate-full relationship with gravity didn’t start until a few years ago.

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Can Amy Come Out to Play?

hmmm… not so much…

It’s so odd when the earth offers so little stability. Gravity is something that most people appreciate but take for granted. Unless you are watching Chris Hadfield performing Space Oddity on the International Space Station (not watching it on the space station, watching it on YouTube ). But for some of us standing on the ground and does not feel grounded. For some of us, the gravitational pull is enemy # 1 and for us just leaving the house can be really frightening. If you’ve never dealt with standing as an extreme-sport you can’t begin to imagine how scary it is. Some people living with MS know what I’m talking about. And just like so many realities of life with Multiple Sclerosis, there’s no way to get it, unless you get it. And I’ve got(ten) it for 26+ years to date. But my hate-full relationship with gravity didn’t start until a few years ago.

Chris Hadfield Space OddityI was commuting to NYU and tripping a lot. It was happening as a result of intermittent foot-drop and I cope(d) by cozying up with my good friend denial for as long as possible, in spite of what retrospectively seems glaringly obvious. Kissing the city sidewalk and the inability to find the horizon line was my repeat nemesis. Since that time, I went on SSDI (disability- I prefer to think of as this-ability) which made it very easy to stay in my pajamas and avoid leaving the house. An emotional stop sign now blocked all exits from my home. Not a warning to proceed with caution or the graphic using wiggly lines that suggest an issue ahead; No, this is a permanent STOP sign tangled-up with the scars on my brain that leaves little room for misinterpretation.

Full stop.

I spend a lot of time thinking about my disinterest in leaving the house. (Granted, I spend a lot of time thinking about what I’m feeling and thinking about why I’m thinking what I think. I’m all meta, all the time.) It makes sense that I’m apprehensive about stepping out the front door. The energy required to consider every single step while I’m trying to make sure that I don’t make the wrong move and end up on the ground, is often more than I can handle.

Over the years I’ve adjusted to the need for assistive devices. I carry a walking stick and at times I wear foot braces. But neither are the vertical guarantee. When I first got them, these “accessories” seemed like superheroes to me. They made me believe that they would stop gravity from its overzealous evil bidding. But it didn’t take long for their kryptonite to be exposed and with it my physical and emotional weaknesses.

• • •

On Monday I went to a meeting to plan the High Holiday Family Service (B’yachad) at a Temple member’s house. It’s one of those evenings that I know if I  get there, I will really enjoy it. This is an incredible group (mostly women… just saying!) and I usually leave with the feeling I am part of something bigger than myself. But in spite of that knowledge, I fought myself all day long. (I’m really good at arguing- ask my husband!)

Fear is usually greater than the sum of its parts and so I broke it down, planning every literal step of the way. I’d been to this house. I knew the hurdles (steps without a hand-rail, not well lit) and so I set up preventative measures to reduce the risk of falling on my face. But even with these cautionary measures, I was still reluctant to go.

I called an “assistive friend” to give me a ride there and a shoulder to lean-on. As we ascended what felt like Masada from the base camp, albeit only three steps. (I should mention here that I climbed Masada twice and even with MS it was less intimidating.) But I made it.  (yay me)

Hard to imagine I climbed Masada twice! 1985 (pre MS) and 2001 (with MS)

Even Masada has a banister! (albeit partial)

Unfortunately a three step descent was not so successful. A combination of unforeseeable circumstances played out and that last step was a doozy. I flailed for what seemed like an eternity and when I finally touched down, I hit the same spot on my knee that had been pre-seasoned by last week’s trip. Every muscle tightened as I recoiled in preparation for the inevitable impact. I was keenly aware that the flailing is more painful than the skinned knee and the feeling of out-of-control continues to sting.  I mean… geez! I pre-planned everything!

Where was I….she says rhetorically to her attention deficit. Oh yeah.

It was suddenly clear. Not because  the fear of leaving my house had been nagging at me for the last couple of years. Nor was it because this fall forced me to acknowledge that the changes (I hate the word “progression”. It makes it all seem predetermined) of my disease are  easily seen. I clearly need to upgrade to “Assistive Device 2.0″ and I’m so scared that it’s not compatible with Amy OS8.

So I’ll reboot, throw out my denial- based -preferences and Google a Quad. (Can I still call it a stick? I hate the word cane!) And will just have to see how it goes.

So please ask me to coffee! If I’m brave enough I will meet you with the four-point-stick in hand, and for once be confident that the sound of my current assistive device falling to the ground will not be heard. My 2.0 will be able to stand on its own four feet. And thus, allow me to master my two and hopefully my relationship with gravity will be renewed. (C’mon Amy, give gravity another chance…. you may turn out to be your BFFs yet again.)

De-marcation of De- myelination!

In 1968 the price of a movie ticket was $1.50, The Beatles topped the charts with Hello-Goodbye and 2001: A Space Odyssey was on the marquee. On the longest day of that year, Vicki and Harris had a baby girl at JFK hospital in Edison NJ.

In 1988 a movie ticket was $3.50. Never Gonna Give You Up topped the charts, A Fish Called Wanda was on the marquee and that little girl turned 20 years old on the longest day of the year when another time maker entered the calendar. In Edison, NJ at JFK hospital where “little girl” was diagnosed with Multiple Sclerosis.

From that point on it wouldn’t just be movies and music that would mark the years. It would be an incurable, unpredictable disease that no one understood. The the MS equivalent to  “where we were when” JFK was assassinated, (not yet born!) when we heard John Lennon was shot, (7th grade listening to the radio before school), and Kurt Cobain took his life. (At a bagel shop in Orlando visiting my sweet Linda for that last wedding dress fitting) These are the push-pins on the map of our lives that we reference in all the years that follow. Who we were, who we are and what will we be.

 •  •  •

As you probably picked up, I’m the girl. Born in 1968, diagnosed with MS in 1988 and turning 46 on June 21st.  (ie.today) As many of my 40+ peeps know, time moves a lot quicker when you’re older. (Haven’t they figured out how to fix that yet?)  And our memory is so sharp for those long ago insignificant moments (insert tragic high school experience here) – but last week is a total blur. (In spite of that supplement of … what’s it called?, Oh yeah… Gingko Biloba!)

 Okay Amy. Stay on target.

The anniversary of my MS diagnosis- (way back when I was a 20-year-old film student in Baltimore) is celebrated yearly. And okay, it just happens to be my birthday… so some sort of celebration is a given- but that’s not what its about for me. It’s the demarcation of “I’ve struggled, I’ve endured and I’ve come out of it with a more meaningful life than I would have had I not been branded with these two letters.” Not that I would know the alternative- but it’s a great spin, dontcha think? But it wasn’t u 2005 that I embarked on my life mission: to make MSSoftServe a reality. The epiphany that changed the way I felt about my future, my past and my diagnosis.

It’s easy to remember how scary it was to be diagnosed with MS when no one knew much about it, there was no way of connecting to others who have MS (imagine that!) and no FDA approved drugs to treat the disease. But even in this digital age of connectivity MS is still scary and not just for the newly diagnosed. MSSoftServe will put the power to the people- so that they can learn without fear and teach with confidence. (for more specifics go to mssoftserve.org and watch some videos!)

As this longest day of the year approaches I am spreading the good word about MSSoftServe and it’s progress. We have raised money from individual donations, from grant awards and corporate giving programs. We’ve utilized those funds to hire a development director (at a very discounted rate) who has put together our strategic plan, produce the get-the-word-out-fundraising site and the PR that will let the people know what we need, what we want and how we want it.  With the guidance of our stellar board of directors- we expect to have the site production in full swing at by the end of this year.  And while we continue the work to make it happen- we need your support to get us to the diving board we are about to jump off.

So celebrate this birthday anniversary and give $10 (ie. a coffee date) to a cause that will make a difference for the 350,000 people diagnosed with MS in the United States and all the other peeps who care about them. Because you will be a part of the movement to change how we learn about chronic illness on the Internet in an empowering way.

Now tell me, in a rhetorical sorta way, how good is that Karma bump!?

Thanks for reading, supporting and encouraging. :)

• • •

BTW, $46 is a significant number (I’m turning that) $26 (I’ve endured that) or $16 because that rounds out the three suggestions in a neat way. Just saying! ;)

Oh, and one more thing- Make MSSoftServe (officially SoftServe Matters) your favorite 501c3 and Amazon.com will donate a percentage of each purchase! The gift of giving and getting in one click! :)

C’mon, Jump In. The Water is Fine.

aglol:

An MSSoftServe update, We need your opinion and musings on water in my face.

Originally posted on MS SoftServe - on the cutting edge:

I’ve never been fond of water. I was one of those kids that didn’t like to get my face wet and all the swimming lessons I took- and weeks at camp and endless trips to the NJ lakes- didn’t help. I mean- I can swim with no problem. I was never as good as my sister who everyone said was a fish or my BFF at the time (Debbie Watson!) who was on the swim team and could do every stroke invented. So, jumping in has generally happened after a hearty push. (A little help here!)

I’ve also found that when I make announcements that I will try to do something from now on- in an effort to trap myself in to a ritual- it doesn’t take. So I won’t say that from now on, I will post casual updates on how MSSoftServe is progressing. Ones that need not be cleverly…

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Right (Write) Now!

Do you find that it’s really hard to read an entire essay, post or article online? I think attention deficit is a sign of these digital times- there is just too much distraction.  Information overload on the web leaves many people running and screaming for focus and peace-of-mind. (Can you say Candy Crush?)  And it’s because I too am soaking in this overwhelm, that I find it really hard to write and spread the word about MS SoftServe. I mean, does anyone out there read beyond a headline and the first two paragraphs?  Is everyone like me – a Scanning Queen? (Replete with Abba harmonies). Please prove me paranoid as I push myself away from the wall and on to the dance floor. (and don’t make me do it alone!)

The “Right Now- MSSoftServe Update”
You may know that mssoftserve.org is currently a word-spreading-fundraising site. It’s the site that will raise the money to produce the customizable site that people with MS want and need. (link )  We are using the site to serve as the aforementioned as well as a tool for larger outreach. (ie. fundraising outreach to the foundations and corporations who can get on board and make the site happen).

So what we now need everyone to do now is represent.  We need to send amessage to the granting organizations to tell them that MSSoftServe is necessary to all of us who are affected by Multiple Sclerosis. To tell them that meaningful learning with more control and less anxiety will be a critical part of how we cope with this disease. And that we need to be able to teach everyone around us about our unique version of MS- without the unnecessary info that will only make our loved ones confused and anxious.

How can you do that, you ask? I’ll tell you (with links!)

There are a couple of ways that you can make your opinion known onmssoftserve’s current site. You can submit a testimonial (words and/or video).  And if that doesn’t fit into your schedule, just “sign” your name and we can add you to the “big list” of people who are waiting with baited-breath for this to hit the web. (send it to the contact-us link) If you need an inspiration, please have a look-see at the testimonials of the board of directors. They don’t have to be long, nor aesthetically pleasing. They just have to be you! And while you’re there, browse around And if you want to be a part of MS SoftServe in any way please email me!  (amy@mssoftserve.org) And put something that really sticks out in the subject line so that it doesn’t blend into the rest!

Well…. I’m hoping I haven’t left you lost in word count. In the future I will cut-to the-update-chase in weekly posts.

(C’mon Amy, you can do it! Write now!)

 

We’re Almost There. For Real!

Originally posted on MS SoftServe - on the cutting edge:

Yay MSSoftServe! Yay you! 

Ok, we’ve been at this for a long time. MSSoftServe started as a vision, became a more substantial concept, and is now it is so close to becoming a reality. I’m sure you are all exhausted. I am too. This has been a very long road! But we are SO CLOSE! In fact, we’re only $90,000 away from actually building this thing!

So I ask you to stay the course, stick with me, and let’s cross the finish line together. (Hmm. This is starting to sound like a presidential campaign!)

Thanks to the foundations, corporate sponsors, and many of you who have donated to MSSoftServe, we’ve created the launching pad, or a diving board, or gateway that is alive and well at mssoftserve.org. Whatever your preferred “jumping off” metaphor is, this site is how we describe the online resource that will help us to:…

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Here We-Go Again! How Can It Be 3 Years?

I’m hitting the halfway mark between 45 and 46 and I’m saying all the things that old people say.  “Where does the time go?” and “You’re just out of kindergarten, how can you be wearing my shoes?” and the oh-so-popular “When I was your age we didn’t have an i-anything!”

Like everyone at this this point in life our brains have aged in that area that turns the endless summer vacation into only a week and the thing that happened 10 years ago, into last year. Where am I going with this??

Oh, yeah.

It’s that time again! WegoHealth is embarking on its third annual awards program for health activists! That’s right third! It seems like they were in diapers just a few minutes ago and now they are celebrating their third birthday!

If you haven’t been introduced to WegoHealth, please allow me. Wego strengthens health activists by connecting them to the people they are reaching out to. Or as they put it: WEGO Health is a platform for committed health advocates to foster new relationships, gain access to helpful resources, and to grow their communities. Kinda the same thing, right?

If you aren’t sure that you or someone you know is a health activist- check out these quotes. If they apply to someone who is succeeding in any of the many award categories- NOMINATE them. It’s pretty much a big thank-you-hug in the form of digital awards. It’s the least you can do to express your gratitude. And their new design for the nomination is sleek and cool. Just check out these logos. Attractive right?

So, if you’re nodding your head thinking about a person who deserves this recognition and you want to make their day. Nominate, Nominate, Nominate.  It will feels sooooo good. Trust me, I’ve nominated many a deserving person, and the warm fuzzies last all week!

Thanks for reading and for nominating that special someone you’ve come to rely on. You’ll be glad you did.

xo amy g.

bestinblog community-1 geek-1 instagramwegofacebook1 keptsecret youtube

 
 
 
*Although one’s perception of time is not associated with a specific sensory system, psychologists and neuroscientists suggest that humans do have a system governing the perception of time.[2] It is composed of a highly distributed system involving the cerebral cortex, cerebellum and basal ganglia[citation needed]. One particular component, the suprachiasmatic nucleus, is responsible for the circadian (or daily) rhythm, while other cell clusters appear to be capable of shorter-range (ultradian) timekeeping[citation needed].