MS Surveys- Do you participate? 1- not at all, 2-sometimes, 3- once a week…. 5- everyday

I just did a survey for Overcoming Multiple Sclerosis (dot-org). I was reminded that I completed this survey on holistic practices with MS in 2012 and that this is a follow up. While I don’t remember the 2012 survey ( I participate in surveys-#5 at least once a month)  – It didn’t seem unusual that I did it and that I don’t remember it! (my memory fails me -#4 more than once a week) But they kept reminding me and every time I got the email- I thought … I’m too busy to do a survey: a lot of the time. It didn’t come with an incentive ( 1. an amazon gift card, 2. a donation to the charity of your choice) which would make the decision a no brainer. But it is a non-profit organization that is interested to know how I incorporate holistic practices into my day to day with MS. (more than twice a week). And okay… I am motivated by doing something that could help peeps like me who have MS.  It’s a non-profit.org afterall. I’ve founded a non-profit org (once in the past 10 years)- I get it.

I participated in spite of the fact that I resent selecting numbers to describe my variable, unique version of MS (#5 depends on how i feel that day)*   And I hate that by participating in surveys for the greater-good makes it glaringly obvious that I’m getting worse. Sometimes I feel offended by the questions. I’m always looking for that last option that reads #5- Stop asking me these questions or #6 None of your business. Those usually deteriorate into one word expletives by the time I get to question #104 and at that point I’m amusing myself with my real life responses which aren’t fit for any survey, but do reflect how I’m feeling. (depending on the day).

But today was a little different. I didn’t mind  (as much) the labels or generalizations that I was forced to select.

It seems on some days I can find the “feel-good” in how I respond to the question “how often does pain interrupt your normal activity” (#5- rarely) and not so bad about the “how often do you rely on a cane or someone’s arm to feel stable.” (every day).

*My name is Amy and I’m a compulsive-(parenthetical)-hyphenating-italicizer!

Oh Snap! Pics that Prove both Faux & Fearless

Do you ever look at vacation pics and need to remind yourself that your smiles are covering up all of the stressful stuff you were dealing with at the time? Like revisionist history, these pics are “proof” of how happy we were in Paris (pick-pocketed), our trip to Miami (laptop stolen) and on the last day of a Spring Break cruise in 1989 (optic neuritis that made my vision skip like the annoying vertical hold on a 1970s TV set.) Actually, that last one was impossible to forget.

But you know what I’m talking about. Perhaps even as recently as last week during the holidays. The snapshots that pave the way to a memory that proves  “a good time was had by all” even if that’s not the case. But for people with MS, these pics are the false evidence of the dreaded response “but you look so good” when you try to describe how you felt otherwise.…. And while I can’t forget the tainted event that I’m smiling through, I’ve learned to let these snapshots comfort me.

Over the years I got better at hiding how I feel in photos. If you walk around my house there are pics all over the place. I’m really good at looking happy- and while some of these shots are honest to goodness happy- I’ve reconsidered the ones that have a painful back-story.

Like this one:

In 2006, Keith, Madeline and I were in Washington, D.C. for an MS related event. We were walking across the grassy mall to the Smithsonian Air and Space museum when I collapsed against the nearest tree barely able to move. Madeline sat down on the ground next to me and “snap”. The smiles take over. It’s not hard to remember how rough that trip was.  (pic below) I know what you’re thinking. “But I look so good…”

After years of resenting that phrase, I’ve found a way to make it work for me.

Noticing the good when you know it wasn’t so good, has its perks. And the feigned smile can remind me of who I am in spite the rough moments I suppressed to conjure that happy face. And even though it was a forced expression at the time, it serves to remind me that there were some really great parts to that vacation. (Madeline lost her first tooth in D.C and the tooth fairy found us, we went to the National Geographic Museum and took a pic of Mads on a pretend panda cover and the fab restaurant we found in the museum of American History. (We refused to eat McDonalds at the Air and Space Museum!)

If I’m only left to my memory devices- I assure you the challenges would be a lot longer lasting than the happy moments.

So it’s not the “but you look so good” said by people who just don’t get it, but it’s the ability to find and remember the parts there were so good. And if you position yourself just so- you can even pull up the good moments while in the middle of one you don’t want to remember too clearly..

That smile reminds me of the “me” who, in spite of the challenges I endure daily, can always find the moments that prove how I’ve learned to live with my increasing limitations and not get stuck under them. And that brings a smile to my face. (closed mouth, proud expression, accompanied by a nod). Not my standard smile with tons of pearly whites- And honest smile that is empowered by taking control. Something that my life with MS often lacks~

Do you have snapshots to revisit? Feel free to comment and post. I’d love to see em.

But I look so good!

 

 

 

Amy & Leslie 1989 Just off the ship

Don’t look so good here… but it was 1989, I’ve gotten better at sincerely feining!

 

 

vertical hold

exact, but not entirely unlike the TV in my rec room in the late 70s

 

 

 

 

 

 

 

Smash Your Halloween Pumpkin for PWMS!

Challenge Accepted!

If you dumped a bucket of ice for the whole world to see, then contributed to the ALS association you were a part of a worldwide effort. Cos your contribution helped raise $115 million for that organization. That’s $95 million more than was raised last year for this cause.  And even if you didn’t make a direct donation, by spreading the word about this disease to others via social networking you were key to the best charitable effort ever.  Awareness is 90% of giving- because afterall you can’t know what you don’t know and you can’t support an organization for a condition that you didn’t know exists.

Stomp it out, smash it out, waaayyy out.

So let’s spread the word and raise a few dollars for what will be an important part of coping for people who are living with MS (and peeps who care about them).  MS SoftServe is a non-profit .org that will put learning and teaching about MS in the control of all of us who are living with it. It is a customizable learning website will lessen anxiety and empower us on new levels. Check out this link to learn more about MSSoftServe and this one to donate.

Why Halloween is the Perfect time for MS fundraising!

  • Orange is the color of the designated ribbon for MS
  • MS is sooo scary.
  • Stomping on a pumpkin to metaphorically stamp out MS is sooo satisfying!

Cut to the Cut Amy!

Many of us will carve a pumpkin and put it on our porch on  October 31st. But what to do with it on November 1st? Before it hits the trash or the compost heap why not smash it, video tape it and spread the word about this effort. Getting the word out about our effort is so important and a few donations wouldn’t hurt in getting us closer to our goal.

ms-ribbon-2 nevergiveuptattooribbon round pole peacelovehope

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 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. To go or not to go. My everyday question.

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 the stairs, it 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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