Yoga & Motivation & Inspiration- Oh my!

MSLOL-RADIO: The Third Show~

November 29th, 2010

MSLOL-RADIO: Yoga & Motivation & Inspiration- Oh my!

As you are recovering from your TG over-indulgence, tune in to what promises to be an awesome MSLOL-Blog Radio show! You’ll meet two remarkable people living with it. Larissa Nusser-Meany and Michael Weiss have taken their MS diagnoses and found a way to help the rest of us cope with our lot.

So wipe the cranberry sauce from your chin and mark your calendars to call in to
MSLOL-Blogradio Monday, November 29th at 7pm. You’ll have a few more items to add to your list of what to be “thankful” for.


Please tune in to our third show when we will speak to Larissa Nusser, a yoga guru who is living with MS. Tune in and find out more about her experience with both; and take a look at the video for You Can Do it Yoga for MS- specifically geared to those of us who are living with MS. It's such a valuable tool! This interview is part of the VOAT- Variation on a theme. This series highlights all the many different versions and the people who experience them!

On every show I will give you the heads up about the non-profit MS SoftServe and why it will help all of us with MS and the people who love us. (or even just like us or strangers on the street that just don't get it!)

The number to call and tune in is: 714-510-3712, and press 1 to share your insights, experiences or just say hey!

And if you have any topics you'd like hear about or suggestions for the perfect person to interview, email me: amy@mssoftserve.org . We will put it on the schedule~

In the mean time check out my blog by the same name (sans radio!) - it's a tell-all sprinkled with a little humor!

Tune in on Monday, November 29, 2010 at 7p-9p for all this and more.
Looking forward to talking, telling and hearing from you then!

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The Many Variations of MS from the Person Living With It! ~~VOAT~~ Variation On A Theme!

Please join me on Monday, October 25^th at 7pm for the next episode of MSLOL-Radio! We are so excited about a brand new series that will start with this show. (Hey, It’s the second episode – gotta keep things fresh!) ;) It’s called VOAT: “jane doe”.  Each of us has our own unique version of MS and this makes us a Variation On A Theme. While we have some common ground, many of us never experience what others do. 

This ongoing series will highlight one unique thread that is part of the tapestry that is MS.  I’m hoping that in getting to know each other, we can expand our understanding of this disease. We will hear about our guest’s version of MS, her (his) day-to-day experience and those tried and true coping mechanisms.* I have little doubt that no matter what version of MS you are living with, there will be some part of these stories that you will relate to.

This riveting interview will take place after my introduction, a “food for thought” moment and a progress report of MS SoftServe- the first site that will be customized for our unique needs. And that’s not all! (For $19.99 you will also get...) ;) We will then “Speak to the Peeps!” So call in and share your thoughts; to “represent” your version of this insidious disease!

*If you are newly diagnosed or just working to avoid overwhelming information that may having nothing to do with your course, it’s understood. I plan to introduce the rough detail of what is to be discussed before the segment starts. That way you can opt out at any point.

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Dependence Day

For the past 20 years, the 4th of July has been all about dependence for me. While the nation celebrates its independence in the stifling heat of July, I’m inside. Like so many who live with Multiple Sclerosis– heat is my dictator, my oppressor, my King of England. And while the summer holds many days that are challenging, the irony of summer’s opening holiday leaving me reliant is a wound that never quite heals. I know that whatever the invitation is, chances are good that it won’t be an option for me. So I sit in my air-conditioned room searching for alternatives on this day of independence, working hard to accept the parameters of my dependence on the arm or the stick that supports me through life.

For the past few years I have found the emotional fortitude to watch my daughter in the town parade. Sitting on the chairs set up by my back-door neighbor, I try not to be envious as I look at the ease of movement seen in everyone around me. Distracted by the parade, I wait patiently for Madeline and Keith to pass by as part of the group they are walking with. In spite of the fact that I’m sitting as one of many who have come to watch the parade, I feel useless. I can’t help but to imagine being there with Madeline as Keith has in recent years.

These can’t-do events were easy to avoid when Keith and I were “single” in our marriage. We made plans to fit with in the parameters of our (my) needs as a preference rather than a limitation. Two adults can make these choices and not be questioned. Sitting in a dark movie theater as opposed to the outside activities in July is not unreasonable when desired by two. But all that changed when Madeline came into our lives. What began as fear of how I would care for my infant grew into not playing in the backyard on the hottest days of the summer and not going on the treks through the local reservation to pick raspberries.
As invitations came that were beyond my abilities, I either “wallflowered” or bowed out and allowed Keith to represent. But as Madeline has grown into the precocious almost-8-year-old she is, my absence stings on new levels. Now she assumes I won’t be joining in and for me, that realization is a bitter pill. So now I search for circumstances that defy her assumption while also honoring my reality.
Who would have thought that my first effort would be on the 4th of July. The day that repeatedly blacklisted me from engagement. Maybe it was an affirmation from the powers that be that it only reached 79 degrees this year on that day or that the delivery came just in time to seal my participation. Arriving on July 3rd at 5pm fully charged and ready to escort me in Montclair’s Independence Day parade- I had no way out. I told myself, that if it came prior to the 4th, I would do it. I made a public verbal commitment, knowing I would not have the option to find excuses. I sometimes have to trap myself that way… my rational brain forcing my emotional brain out into the fray, like a kindergarten-er on her first day of school. By parading myself past the entire town while struggling to accept this variation of me, I am forced to do exactly that. I will be playing the role of someone who is at ease, in spite of the real character behind the continuous smiles and waves of a parade. It’s all or nothing… that’s how I roll – so to say .
***
Despite my efforts to evade this inconvenient truth, I finally forced myself through the red-tape that helped me to avoid this acquisition for years. Forging ahead in spite of an intense internal resistance… I am now allowing myself to use that which I can barely utter for the scenarios that were beyond my reach, my step. Showing my daughter that I can be there representing with a cool ride and a big smile. Pretending its okay…even before it is… I know I’ll get there. And while my forced physical presence could only happen by making and losing/winning bets with myself, I will continue to find ways to accept the me who needs a device for mobility… to be a participant and not a sideliner. And Madeline will get the message, without even knowing it.

Question of the Week: Inspired Time

Living within the limitations that MS hands me, I have learned some amazing things that I CAN do.  I credit this understanding to the extra time spent thinking that would have otherwise been filled with endless high-energy activities. (Nice spin, dontcha think?) This sweet rationalization includes both my writing and my non-profit, MSSoftServe.

I had never known that I had (have) a talent for writing, nor had I the confidence to pursue anything.  Both turned out to be true.  My blog is both a conversation starter and a catharsis. I write my essays and I have found quite the release by putting my emotions out there on the www. The positive feedback makes it hard to ignore; it apparently isn’t only me getting something out of it, and that furthers my warm-fuzzy-factor.

The non-profit has become my life mission. I’ve developed a non-profit that provides a new, customized way to learn about MS while you’re living with it. It grew out of my master’s thesis (I never thought I could get a master’s degree!), and from day one I’ve never considered NOT doing it. MS SoftServe has a Board of Directors, a strategic planner and grant applications in its not too-distant-future. And all I can say is Who Knew?

So tell me, what have those two letters taught you about your capability?

I'm thinking.

Now you're wondering what I'm thinking; that's how it works when you make open-ended statements like that one.

I've been thinking about how my life with MS has changed radically in the 22 years I've been in the club. But I'm not thinking of the obvious ways; those being the symptom accumulation, the increased medications, evidence of the strength of character that comes with enduring challenges and still finding humor to make it through. (Did you know there are visible muscles associated with that!?)

I'm thinking about how for 18 of my 22 years my MS, I was invisible to the passer by. There was something comforting, yet distressing about that. It was hard for me to have so much going on behind the scenes (things that required major emotional fortitude) and being in a group of people who had no idea what I was tolerating. I'm an "everything out there" kind of person and it comforts me to be understood. Yet it also allowed me to sit in cozy denial of what was really happening; that being my increasing loss of abilities.

In 2007 I started having balance and dizziness issues. Adding that to my already present foot-drop, I was being served one toxic cocktail. And so, I was forced out of the closet.

When I started using a walking-stick, everyone knew I was dealing with something. And while on many levels it throws a wrench in my efforts at denial, it does have a few things going for it.  Pray tell Amy, what things?, you conveniently ask. First off, it gave me an opportunity to educate a lot of people about MS. (Hey Amy what's your deal?) and secondly I no longer had to explain myself to strangers on the streets of NYC when I got-all-horizontal.  (Dude, what is your problem?)

So tell me about your experience with visible/invisible MS; unless of course you aren't an "everything out there" kind of person. In that case, read, think, move on. But better yet, throw caution to the wind and tell us all about it. Your choice, no pressure!

Question of the Week: Self-Image

Big Wheels Keep on Turning, Proud Amy Keeps on Burning (rubber!)Two weeks ago I, along with my family of three, went on a vacation to Seattle. We'd never been there and had heard that the coffee is spectacular. It had been many years since our last vacation, back when we were a family of two, and I knew this would be very different.

My ability palette has a few less tools than it did 10 years ago when I climbed Masada in Israel. On this trip I had a motor and a comfy seat held in the front of the plane, waiting patiently for me.

Although I got my scooter over a year ago, I've had to force myself to use it planning trips to museums, sculpture parks, and zoos. Things that I want do, but can't without wheels. This reality is so hard to accept; scooting makes it obvious to everyone that sees me.

I am very aware of how people treat me with more concern, getting out of my way as I move through a crowd, (This may be standard behavior in Seattle even without a scooter, but New Yorkers need a clear signal to not to plow you down on the street with eyes rolling.) I can't help but to feel that this image isn't me.

I know all that this vehicle affords me. (Can you call it a vehicle?) I know that I can participate in ways I never could without it. But somehow I'm uncomfortable with how it feels to be hip-high in a crowd, eliciting question marked faces and sympathy from everyone I "run" in to.

What is your experience with your MS image?

MSLOL- Multiple Sclerosis Life of Learning

Don’t you hate it when you have something to say, it’s right on the tips of your fingers, yet it remains elusive? Elusive is such a great word,  don’t ya think? But it isn’t the one I’m looking for!
Please check out my post on MS Health Central that goes in to stunning detail about all of the words I can’t find and as a result tells you all about MS SoftServe.  
Because I have lived my entire adult life with MS, I have grown in ways that I wouldn’t have otherwise. I’ve seen this familiar strength and resilience in everyone I have met who endures this challenge.

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