It was a great one… Our guests were truly fascinating. I know that I am already approaching my every day a bit differently having heard them. And who knows, this may be the beginning of a beautiful (yoga) friendship.
MSLOL-Radio Show 3- Larissa and Michael Inspire and Motivate
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.
When I took my daughter to her first singing lesson it all came rushing back. As she moved through her warm up scales, I leafed through the sheet music she had selected. For her, the songs of Wicked were a no brainer; she had just learned them at her theater camp this past summer and she already knew the words. Singing show tunes after scales was not something I had to Try (hard) to Remember. While watching her I remembered me- the pre-MS me- and “this ability” that didn’t change after my diagnosis. It was here all along.
When I was a girl the music of Broadway was always vibrating through those cheesy fabric speakers on the console that sat on our green shag rug and took up no less than 6 feet of horizontal space. My parents loved this music and they played the albums until the grooves wore out. (For those of you under 30, that is a reference to the vinyl discs from olden times.) This comes as no surprise being that my mom’s dad (GP Aaron) was smitten with the musical and my mom grew listening to the score that I knew so well.
Pippin, A Chorus Line and The Fantasticks were the soundtrack of my childhood. My sister and I knew all the words to all the songs and danced around the living room singing them at the top of our lungs. Though we only went to a handful of Broadway shows (A Chorus Line, Annie, La Cage aux Folles and of course Cats) that music was the fiber of my original family. And to this day my sister and I will break into song when a word prompts us, much to our husbands’ chagrin. 😉
In addition to a love of music those shows taught me some very valuable lessons. The first and perhaps most timely, was from A Chorus Line. “Hello 12, Hello 13, Hello Love” was a great conversation starter about the facts every pre-teen wants to know but is afraid to ask. La Cage introduced me to transvestism, an understanding made more complete a few years later when I saw Rocky Horror Picture Show. (Also a musical!) I recited the poetry of TS Eliot to a tune and learned about the travesty of war diluted by dance and song. And I’ll always remember the tiny play in a tiny theater on Sullivan Street where I found an instruction manual for sneaking around your parents to be with that first love. (Now that one really spoke to me!)
In spite of my compromised self image I continued to enjoy singing in the years that followed. When I entered high school, I immediately joined the choir and a year later auditioned successfully for both the acappella and treble groups. Of course by this age I could no longer find the reckless abandon that my living room afforded me. I was firmly positioned at level-8 on the insecurity scale of 1 to 10 [10 being most insecure :)]. And even acceptance into these advanced choirs didn’t help me feel more self-assured. So I took singing lessons hoping to find confidence. Clearly the issue would more likely have been resolved on a the couch and not next to a piano. Wow, I hadn’t considered that self-esteem indicator until I wrote these words. (note to self: call therapist!)
It wasn’t until I moved out of my house that I realized that not everyone grew up with a love of Broadway musicals. It’s funny how that works. We take for granted what we were raised with, assuming it’s standard fare. It was never more evident than when I was hanging out with college friends and after someone said “One” I launched into a very loud “….singular sensation, every little step…” (crickets) Not the harmonic response I had expected. Just a silence filled with the wide-eyed looks and lifted eyebrows punctuated by an “alrighty then.” But all the while I could hear Grandpa Aaron singing in my ear; a voice of approval for this mutual love that he passed down to his daughter and she to hers.
In the 22 years that followed I never thought of singing again. Not once. Maybe it was because I was distracted by my MS can’t-do-list which was growing and after all, singing never held a strong position on my can-do- list.
But recently, I’ve learned that I can do more “performance” than I could even have imagined. I now host an MS radio show, write a blog and am the outspoken founder of the non-profit, MS SoftServe. Once its live it will be the first individualized learning website that grew out of the Master’s degree I never thought I was smart enough to get. Ironically, with MS I have found an expertise that has ultimately given me a confidence I never knew possible. And it only took me 23 years to get to here. 😉
Madeline and I are sharing our lessons. Every week we sit in the spotlight of a tiny room with carpet on the walls; singing a song that doesn’t require a stabilizing arm, a walking stick or the ability to be balanced. And my limitations are left outside the soundproof door.
Finding my voice as 42 year-old woman, living within the restrictions of MS for over two decades, is empowering. I’m no longer afraid to get up in front of that audience and I have finally found, that something special that Madeline and I can share; one that doesn’t ask more of me than I can handle. And wouldn’t you know it- it was there all along. After all of these years I can now see that I am the “one” I’ve always sang about in a song that transcends time.
Please join me on Monday, October 25th at 7pm for the next episode of MSLOL-Radio!* This blogradio show is a companion to this blog. 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: “Special Guest”. Being that each of us has our own unique version of MS we are all a Variation On A Theme. And 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 MS tapestry. 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.
In this episode we will speak to Vicki Bridges. You may know Vicki, a writer at Health Central’s MS site. She is also a mother and an MS advocate. (to name just a few) She was diagnosed with Progressive MS in the late 80s, though she was experiencing symptoms long before then. She will tell us about her challenges, triumphs and where she finds the strength to endure. Hearing Vicki’s story will add yet another piece to the puzzle that is the MS Community. She’s a very interesting woman, and I know you will enjoy meeting her.
This riveting interview will take place after my introduction, a “food for thought” moment and a progress report of MS SoftServe: The first website that will be customized for our unique needs. (And that’s not all! For just $19.99 you will also get…) We will then “Speak to the Peeps!” So call in and share your thoughts; “represent” your version of this insidious disease!
I look forward to “seeing” you there.
* MSLOL= Multiple Sclerosis- A Life of Learning~
**If you are newly diagnosed or just working to avoid overwhelming information that may having nothing to do with your course, I get that. I will preface of what is to be discussed before each segment starts. That way you can opt out at any point.
These links will bring you the blogradio page that includes instructions on how to log on to the program.
In case you haven’t heard the good word, let me be the first to tell you that MSLOL is coming to blog-radio. Join me on Monday, September 27th to hear the audio component of this blog. Very exciting times, these are.
How will that play out, you ask? I’m not sure.
I can say I’m great at talking and laughing and speaking of my life mission (the MS SoftServe one!) I’m happy to tell anyone just about anything about my experience with MS.
Ok, so that’s two things.
Oh, and each show I will interview a person from the MS community. (Isn’t that a nice vague requirement?) The debut show guest will be Kim Gledhill, a fascinating woman who has been living with MS for 14.5 years and has an interesting story to tell. She is part of the constantly growing community of people “living with it” on Facebook. You know, the social network that connects you to all of your long lost friends and those who you’ve passed on the street once. What you may not know is that Facebook is an incredible resource for those of us living with that two letter suffix; and prefix for the those of us who are women. (As I like to say, I’m MS-squared!)
So here is the ticket to listen:
Here you will find out important facts like that it will “air” September 27th which is a Monday, at 7pm EST and how to log on. And check this out, you can listen online or via your phone. Ah, modern technology! And don’t lose sleep if you still can’t make that time slot. I will be posting the audio file here. Of course if you are listening live, you can call in to ask or comment on whatever you so desire. (Let’s keep it MS related, shall we?)
Looking forward to “See-ing” you Monday.
That’s Ms. Amy Gurowitz to you!
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. 😉
A month ago I started experiencing a problem that had nothing to do with MS and I can’t even tell you how exciting that is. I generally steer clear of scatological talk (cause lets face it, it’s disgusting!) but for the sake of this discussion I must explain that my “problem” brings to mind a Niagara Falls metaphor.
Having symptoms that change as fast as Facebook status updates, I’m very aware of what I feel when and for how long. After five days with this unfortunate experience, I went to my GP. She sent me for blood tests and x-rays and then to a gastroenterologist who sent me for a cat scan, and now I have a colonoscopy on the calendar. Apparently I have “mild, non-specific swelling in the lymph nodes of my abdomen and groin” (isn’t groin an unpleasant word…kinda like spleen or bile). So I’m curious what is wrong and hope that it has something to do with my abdomen sporting the pregnant-chic look; but the investigation and not knowing doesn’t faze me. Being poked, prodded, tested and schlepping all over town for the right specialist to bring test results for reassessment isn’t foreign to me. And I have no doubt I will be fine. But the surprising part of this experience isn’t the blasé optimism I’ve so easily found. No. The part of this that has me sitting with my jaw slack-and-agape is that this is the first time in my adult life that I’ve had a health concern that isn’t MS related.
As a woman who has been living with this “nobody knows why” disease, I have learned to accept what is, and not throw my hands up in the air with every new symptom. But look at me now! I have films and digital renderings that correlate with my symptoms. Did you follow that? I have symptoms that actually reflect what is going on in my body. Look! It’s here, here and here on my catscan! This is a totally new experience for me. MS is an amorphous disease. It’s often hard to describe a symptom and it can’t be pinpointed on a scan. While MRIs are an amazing diagnostic tool, they don’t provide a map to the symptoms that impede my ability to function everyday. No one looks at my annual MRI and says “Hey, this scar here is why you can’t walk far; this one is why you are incontinent and have regular bouts of pain and this is the pesky little guy that makes you dizzy all the time.”
So, here I am, reclining on my flexible office chair with my hands behind my head, smiling. Of course I can deal with this. It is actually fun. But in the midst of this bliss I find myself glancing around to make sure no one is looking at me; sitting with the sad, pointless speculation of what my life could have been had this been my first major health issue. Of course I shake it off and look to the more positive aspects of being me, while trying not to lament my summer reality that I can’t really leave the house unless it becomes unseasonably cool, that I’ve been taking so many medications for the last two decades that I have to carry around those little plastic reminder cases and that I struggle with the fear of the unpredictability of doing errands alone.
I take a moment to mourn this loss and then I go back to the bliss of a health problem that will very likely be resolved. And while I’m there I breakout the list of things that make my life full and fabulous. Cause lucky me! I got a bunch of those. And at this moment, the best part is that I will count down the days until my colonoscopy when I will likely learn exactly what is wrong with me and how to fix it.
I am so excited.
Waking, checking the time, the temp, the charge on the wheels that will allow me to do the Riker(s) Hill Art Studio tour planned for later in the day. I made a deal that if there was a charge, I would do it. I would walk during the morning hours before the tour and I would do it alone.
The early hours are my closest friend. Temperatures at their lowest, mind clear of the chatter that bombards my mid-day; is the laundry folded? when is that essay due? has the letter to the board been sent? Enjoying the space that is clear after 6 hours sleep, the earlier daylight beckons me.
With the power in the green, I charge ahead. I will walk with my stick, sans the stable arm I’ve come to rely on. i can do this, i can do this. Would I know where to stop so that I can make it back home? I’ve been there, the not knowing, the getting stuck. Sanibel in the early 90s, the before time. Nothing yet approved to combat the progression. am i progressing? where was i last year? what could i do then? can i do it now? Shhh! There is no grand perspective. There is only today, now, 6:20 am.
An eye on the thermometer, unseasonably hot they say, yet these early hours find a warm gentle breeze. do it! ignore hesitation. With grounding by Nike (ethical issues muted by adoption) I put my foot down and start my descent. The stairs lead me away from my comfort zone, that couch of wisdom that distracts me from what cannot be.
One step with stick, the other on its own. One step with stick, the other on its own. One step with stick, the other on its own. The pace slow, yet accelerating my heart. My breathing provides rhythm that informs my mind’s wandering. i’m doing this. What distance will keep this an independent journey. The defeat, sitting in the sand waiting for a friend to come back with his car. it won’t happen now! am i progressing? where was i last year? what could i do then? can i do it now? Shhh! It won’t happen now! Stop yelling! How many more steps should I take? The icepack cooling my neck, drips water down my back. My mind’s rhythm in concert with my feet falling and within that tempo is the scraping of my foot dropping. is this the point? no, just a little more, up to that house – the one we can see from our back yard. scraping. Walk in the road- is this it- where there are less obstacles –scraping– to bring me down, just up to the house with the natural landscape…STOP!
I surprise myself with a sudden about-face. Like a band-aid removed, the unexpected shock of my mind’s settled argument. I turn around to find rhythm that doesn’t speak defeat. My foot drop continues to scrape the ground, my back arches in a satisfying crack and I find the rhythm in my continued walking. Quieted by the pride that is slowly building, no words to define. My rhythm increasing to a beat that my feet aren’t following, though my breath is. When I finally reach those steps I tip my head back and silently scream in exultation. (I did it!)
If you missed our live chat, check out the transcripts of the conversation.. maybe there will info you will find valuable. If not… you can scroll down and out! 😉
Click here!
We’ve all been there. We try to eat well and exercise. We have the best intentions that are renewed each year in resolute declarations. There they sit, along side the list of things we hope to start or stop doing. And every part of life pulls and pushes in this balancing act, setting us up for the next new year with a new list; or the same list written with a different pen. 😉
We live in a culture where people diet themselves to starvation and exercise to injury. And don’t even get me started on the images that assault us daily or I’ll open up a can of feminist–whoop-ass on you faster than you can say Gloria Steinem!
It is tough to escape the standards set out for us, especially for women. The basis for comparison is everywhere; whether it is projected at a theater, backlit on your flat screen, or printed on the pages that scream at us while waiting on line at the grocery store. These images are slammed so far down our throats that even what would be considered healthy isn’t enough for… uh-oh… did I start opening that can? (She says putting it down and slowly backing away from the table.) What I’m saying here, is that we all struggle with society’s expectations of how we should look. It is not an easy line for most to walk and even more challenging for those of us who have trouble walking any line.
If you think trying to commit to a healthier lifestyle is hard for you, consider the hurdles a person with MS has in that court. (Hmm. hurdles, court… did I just mix a sports metaphor?) Not only do we have to battle the approach/avoidance that everyone finds at the gym door, but we are also fighting our limitations that can change weekly, if not daily. Try to imagine riding an exercise bike and being incapable of walking when you are done. And sure, if there is a place to rest you might be able to leave the gym on foot. But tell me, could you find the motivation to keep up that good habit? Of course I was offered the “get out of jail free” card (ie. MS) that excuses me from all gym obligations; But I won’t play it. I want to be as healthy as I can be, to take control of what I am able to. Exercising is one of those things. Or is it?
It happened after I had completed an aqua-aerobics class for people with MS. (That’s AACFPwMS if you’re google-ing it!) I had only been in the class for about a month and I …was …loving it! I could get some cardio going without getting too hot or, as I feared, ending up face-down on the floor. Moving in the water felt great… the running, cross country-ing, scissor-ing, situp-ing, pressing “lights” (as opposed to lifting weights) and after an hour I wasn’t destroyed. I was so excited that I could feel my muscles burn the next day. I can’t remember the last time that happened. In the water I was MS free and my ease of movement was liberating. And then in a moment, it wasn’t.
Suddenly, the wind of my enthusiasm was knocked out of me. Getting out of the pool that day was like pushing an unwilling child into the doctor’s office. Those legs just weren’t cooperating. Even after a firm talking to and a time-out, they wouldn’t behave. (Legs today, sheesh!) So I decided to kick-it up old school with bribery, threats, and finally a good smack. But they were plugging their ears and singing Mary Had a Little Lamb the entire time.
There I was, in the midst of an MS attack. The worsening symptoms that determined this episode were compromised balance and difficulty walking. They sound small enough, when listed in black and white, but they were large enough to frighten me to stillness. So I did what those of us with MS frequently choose to do at exacerbation onset. I punished my system with 5 days of Solumedrol. It was a reprimand that could be heard blocks away.
“Immune System! You get down here this instant. If you don’t leave your little myelin alone, I am going to send you to bed without your white cells!” I mean it this time!”
And just when I thought I gained the upper hand, she showed me that I shouldn’t mess with the system that is responsible for protecting my entire body… even if she repeatedly mistakes my myelin for an invader. (Will you never learn??) So, in response to my steroid tantrum (which did alleviate some of my symptoms) She made sure the subsequent side-effects left me crying on the floor. She is in control. Not me. And with a rapidly enlarging waistline and a self-esteem grounded for over a month now, I now know who is the boss of me.
How is it that the same drug that shrinks the swelling around my neurons works the opposite on the rest of me? I kid you not, I look 8-months pregnant – I’ve been there (8 months pregnant that is,) it’s not something you forget. Even the most secure person, resistant to all social pressure is rattled when suddenly her body is an unwilling host to an alien baby.
As I continue to deal with a wide variety of symptoms that won’t respond to treatment, I am constantly searching for health within my limitations. Living with my version of MS makes exercise, at times even movement, very difficult. And my need for comfort is at times off-the- charts. Juggling that reality while having to deal with demoralizing side effects- is truly a cruel joke. One that ends with a light ha ha ha and finds everyone looking around, pretending it was never said.
But I’ve been living with MS for almost 22 years. I am the Zen-Master of coping. I have no doubt that I will craft the right alternative… perhaps a combination of emotional manipulation with a little blind determination and a few soothing bowls of cereal to carry me through. Whatever the case may be, I will work hard to keep my ego intact with no need for added dr.’s visits to heal invisible injuries.
As I pack up my gym bag I notice my immune system just ahead of me, skirting around the corner to avoid eye contact. She knows that I’m figuring this out and when I get to where I’m going, she won’t be able to bring me down so easily. While my physical limitations will likely be here for the long haul, my emotional consonance finds refuge in the end. Because as feelings of loss for what I might have been without MS run through my neurons; I find hope that I will be ok in spite of the burn~
MS~LOL: Multiple Sclerosis a Life Of Learning 