Category Archives: MS Diary

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I’VE HAD IT!

Okay.. I’m the queen of optimism here… Anyone who knows me- knows this fact. Since reports came back from my kindergarten teacher in 1973 it was on record. “Smiles, endless smiles. Amy is so happy, she’s a joy to have in class” Now granted.. this was news to my mom being that my home life was different. Ever since my sister came on the scene my role changed. Only 20 months younger than me, she catapulted me from center stage, and I hadn’t even sung my big number yet. So, my shining persona was not evident in the daily family experience. Imagine that.

Years later that sunny disposition and overall optimism “in-spite-of-it-all” has carried me through so many of life’s dire moments. And its that attitude that keeps me going no matter how hard MS pushes me back.

But I’VE HAD IT!!! (as previously stated!)

Of the myriad of symptoms I invisibly juggle everyday… Foot Drop has been an unwelcome repeat offender. To clarify..  Foot Drop is when your foot does not listen to the message to pick itself up~ so, at the all important moment, say when one is taking a step, the toe portion drops down… igniting a trip-stumble-fall scenario that is very unpredictable and usually humiliating.

Walking through the NYC streets and stumbling on nothing does not do much for your cool, unfazed city image. But since I was labeled a “klutz” long before diagnosis… it was not an unfamiliar feeling. I can only imagine how this disease impacts people who were dancers or athletes. For me, however, it was a couple of notches lower on the less than 0 scale of coordination.

And yes.. I’ve got many amusing/pathetic stories of kissing asphalt in NYC. This was one of my incentives for using a stabilizing stick on my commute. It has saved me from many falls since I added it to my routine. When I get to work (at NYU Film school) I walk the halls sans stick. Not because I’m working on a particular image amongst the students… it’s great to be an adult who is beyond caring about those things… but more because I’m comfortable in that space… and have things to carry- rendering the stick inconvenient.

So.. we are finally narrowing in on the story leading up to this interjection!

It was almost time to leave. A student asked me a question that I did not know the answer to… so I threw caution to the wind and walked 10 feet to someone I was sure knew the answer. On my return trip (as it were),  approaching the staircase that was situated between the start and end point- I did just that. I tripped dramatically. I was as horizontal as one can be without flying (or sleeping) until I righted myself. I was furious!!! The spectacle of the matter didn’t help. There were many around observing me trip over a phantom item.. and as I pulled myself back up I was standing next to a faculty member who was leaving the staircase and made a light-hearted joke. This would normally have been how I would have handled this exhibition, but this time I was pissed! Dammit! I can’t even walk a circle of 20 feet without displaying my brain defect! And for some reason I wouldn’t laugh it off. I was furious. So, I uncontrollably stated: “You know I have MS right!? This happened because of an MS symptom! I have foot drop! So I trip over nothing!” Poor guy. Talk about being caught in crossfire. It was me and my MS and we were yelling it out for everyone to see… and hear. This particular faculty member is a sweet guy… we’ve always had such a lovely “hello-goodbye-have-a-nice-day” sort of relationship. And now, he found himself in the midst of my tirade of frustration and anger and he remained sweet.

So I left for the day with my stick supporting me through the commute home as I grumbled to myself about how I can’t even walk 10 feet without tripping. I was angry and feeling sorry for myself.

I was diagnosed with MS when I was 20. I never had a period of my life where I felt in control of things. Just as I was leaving my tumultuous teens and embarking on a life of my own… taking over the role of “boss of me” from my parents, I had a new boss. One that appeared unexpectedly and told me I couldn’t do the things everyone else was doing. One that has a job plan for me, but refused to allow me to be prepared for it. And once I got used to my new job requirements they changed. Everything becomes more challenging and my ability to meet the requirements are much harder. But in the end… I always matched them.

Days later it feels like a distant happening. Another story to tuck in to my over-flowing-suitcase under my bed. I’m not sure if being pissed really served me. I think I prefer to be strong and humorous. I suppose that makes this ride more tolerable.

And so it evolves.

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a pause

Consumed with many distractions, I wanted to pause and share a poem i wrote when flooded with emotion about having to put my cat Frankie to sleep. Since I started blogging I have found a wonderful coping mechanism, a catharsis in writing. In particular when dealing with loss.  (losing someone twice) Be it a person, a pet or an ability- words have more power than I knew when I began this blog-journey.

So without further adieu, my emotions in words, this week.

Being Frank

Waking, a half conscious journey to morning rituals
Shadows that mark places to avoid are in memory only
The loud greeting while the house sleeps need not be hushed

Greenest eyes pleading for who knows what are closed
An unexpected hole opens wide
For the first time
There is no one sleeping on our floor

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The MS Tapestry

I recently read a beautiful piece written by an MS blogging friend about her diagnosis. She drew a masterful allegory comparing her diagnosis to her son’s coming of age Tai Kwan Do blackbelt test.

It got me thinking.

Not only about my own diagnosis, but also about the richness of everyone’s unique story.  What a fabric we weave in sharing these stories. I feel like I would like to make this a visual statement. Not unlike the AIDS quilt. Is there a unique way to take these MS stories and weave them together visually, without losing their individual value? Allowing for each story to maintain its integrity yet build something larger.

There has to be a way to do this. I’m going to be thinking about that for a while. And while I’m on the search I’ll think about my diagnosis… and how that works in to this fabric.

Thanks for checking in…

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Silent Clamor

Today is Wednesday, August 13th. As per usual I commuted in to NYC via the train across the street from my house. Every weekday that I’m feeling well plays out roughly the same way. I walk across the street with stick at my side and my far too heavy backpack keeping me grounded. Exchange pleasantries with the co-commuters while we wait. Depending on the train I find my place- today it is a long car behind the engine, 2nd seat on the left. Prop stick against the wall, assume commuter position.

From the outside looking in, that position is a static one, assumed by the quiet masses. For me it is where the action starts. Depending on that day’s distraction -be it the Science Times, the New Yorker, and lately any book by Haruku Murakami- there is an ebb and flow between the read, the thoughts of the moment and the cacophony of the commutation orchestra. All this input is punctuated with the pull of sleep- a not-too-distant memory from a few hours earlier.

The code of silence may surprise the spectator who has never experienced the mass transit commute into a big city. It is a satisfying start to the work day. A collective moment honored by all, and interrupted only by the call for tickets and the staccato of the hole-puncher making its way through the car.

This is the time-in between the quiet clamor of the daily migration, that I, along side hundreds with whom I share the experience, start my monologue for Wednesday, August 13th. Today I feel different. I woke up feeling the dizziness I have felt since December, but as soon as I transitioned from front lawn to platform, I knew this commute wouldn’t be the same. While the details on the outside were identical to yesterday’s, what was happening on a neuronic level was new. Something barely interpretable, but present none-the-less. Just to be sure I put it to the test. I added flourishes to the action walk up, walk down, walk across repeat. I try increasing my speed slightly and adding a rhythmic jump that I haven’t known for some time.

So many take a stairway trip for granted. I’ve watched how effortless it is for most – not a second thought, never even grabbing the handrail. I haven’t had that luxury since I was 20. But today, I added a little skip to may downward trend. Taking a moment to experience that minor change, and relish it later as I write- it’s a nuance that excited me for what I might notice on the way home. Wish me luck.

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A letter to Dr. Jill Bolte Taylor

Dear Jill,

I have just finished reading your book, My Stroke of Insight, and I am so completely moved by your experience. While it is true that any person with a brain would be taken in by your story, my relationship with my brain has been a challenging one and thus it is that much more a significant read for me. I have just celebrated my 20th anniversary with Multiple Sclerosis and your book has driven me to revisit my relationship with said brain.

Over the years my brain has been many things. My brain was labeled average in a lacking school system that didn’t recognize different learning styles. As I entered college and tried to see what it was made of, I was diagnosed with this unpredictable disease. From an early age I learned what I can’t or won’t be able to do.

But my brain ultimately came through with a positive attitude that has served me well in spite of life’s pitfalls. Experiencing my version of MS, I grew stronger in outlook and my brain and I lived happily until the new next episode hit and I feared I could not handle it. But we became partners again as my right hemisphere gave me courage and my left side joined in with a plan to manage the loss. This sequence happened repeatedly as I lost abilities or gained symptoms. Ultimately my strength of character (right hemisphere?) came through and served my brain well.

The relationship with my brain remained stable as long as I could handle the blows that my immune system was dealing me. When symptoms arose I doubted my ability to incorporate them in to my daily routine. Depending on the symptom, the arc of acceptance varied in size and length. Pain was one that was particularly hard to handle. Luckily my brain found a way to make it more manageable… and eventually a new circuitry was established with which I could cope. So you see the rollercoaster ride my brain and I have been on these 20 years.

What I realized in reading your book is that my brain deserves applause for the cellular genius that it exhibits everyday. My brain isn’t my enemy… it’s a victim of these unwarranted attacks from my confused immune system. It needs the encouragement and rewards that you have illustrated in your story. There are many symptoms for which my brain has found a new neural network – giving me back abilities I’ve lost. For the symptoms that are constant I realize now that I can rally behind my brain in an encouraging way.

Your experience is beyond the comprehension of most people. To have a tabla rasa, to rebuild from 0 is more than most of us can begin to imagine. Your telling of that experience is awe-inspiring. But more importantly you have shown me (and so many others) that these internal conversations, and use of energy that is beyond our human limits to understand is in fact scientific… not speculative hope. And that is power beyond our neurons.

Thank you Dr. Bolte Taylor. You have given the world an enormous gift. One that I will enjoy daily on this neural escape called life.

P.S. I will most certainly donate my brain to science.

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Behind the Scenes

For the last week or so I have been home with plenty of time to write in my blog. So why haven’t I done so… There is something about my experience with dizziness that has made it difficult to be productive in spite of the fact that I’m not dizzy when I sit at the computer. The emotional response to anything that MS puts on my plate is multi-layered. Nothing made it clearer to me than reading My Stroke of Insight by Dr. Jill Bolte Taylor. The text is having a tremendous impact on my day to day experience with my compromised brain.. and I’m writing about that now- behind the scenes.

Look for that post soon.

Thanks for not writing “check in on this blog” off your to do list~

ag

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Still Dizzy After All These posts…

So this last week I’m woke up dizzier than the night before. And what originally would fade is now constant. My MS Recovery Diet variation is still up and running, and as I try to put a finger on the how and why – the reason keeps changing positions. It’s so often that I seek out reason for a sense of control… But, as with anything MS, control is elusive. Is it another attack? Is it the same symptom cropping up in these hot summer days? Is it cumulative – and anytime I exert myself I should expect to pay for it in the following weeks?

I suppose I will just have to keep on, keeping on and categorize after the fact. Yes a more organic experience- but one that doesn’t grant me any sense of control. Perhaps I will remember that reality the next time I try to put all the symptoms in neat little boxes. Perhaps not. After all, I’ve had these initials under my name for 20 years and I still haven’t figured it out.

Note to self: check back on this entry the next time I search for reason.

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Left Out

Since I was twenty months old I have felt left out. Everything was going along okay and then my sister was born and it really messed things up. Although I don’t remember the day, I am told that when my mom stepped out of the nursery I covered my newborn sister in talcum powder– the earliest attempt at white-out on record!

Over the course of my life I repeated that pattern. In grade school, in highschool… early college and even after I graduated- I was always drawn to friendships in threes -reliving that circumstance, creating the triad that inevitably leaves one of the three feeling not a part of things. It’s a lait motif; a constant comment for my years of therapy. I learned that I was likely recreating these scenarios to get get some resolution. In retrospect maybe it was just preparedness training.

When I got my diagnosis at 20,   that “left outtedness” was promoted  to a starring role. And while I try my best not to dwell, the reality is that there is so much that I can’t participate in. On strong days, I can say.. “but there is so much I can do”. Some days I’m not feeling so empowered. Those are the days when I can’t stop thinking about the things I’d like to do. In the summertime it feels like a regular occurrence.

The pre-baby years of my marriage were much more controlled. Avoiding heat and spending a lot of time doing what I can do wasn’t too much of an effort. (I married a man that loves the social scene of a cold dark movie theater as much as I do!) But when my daughter was born it quickly became a different ball game. Cut to today and we have a 6.9 year old pulling us outside for a wide array of activities.

My husband is happy to acquiesce to all of my daughter’s outdoor pleasures. He spends many hours playing catch, jumping rope, being tagged and “duck duck goosed”. The social ops that we are part of as parents are also new frontiers. The invitations for beach trips, the swim clubs, the Bronx Zoo excursions… the fun outdoor activities that complement every families summer calendar are ongoing. And the feeling is not only me being left out… but concern that Madeline is not getting to experience all that she should-and it takes on an energy of its own.

Yesterday we went for icecream with my husband and her friend from camp. When her friend wanted to know what flavor I’m getting, Madeline said “My mommy can’t eat ice cream because she’s trying to make her MS go away.” While I don’t expect that my new way of eating (or not eating) will make my MS go away, it was refreshing to hear the interpretation that Madeline stated so simply.

And it got me thinking more about her point of view.

Madeline doesn’t feel left out of anything. She isn’t competing for anyone’s attention nor does she seem terribly concerned when her friends are enjoying things without her. I expect when she reflects back on these summer days she will not be remembering anything but the fun she had and what we all did together.

Yet on a regular basis, I wish I could do more with her. I can’t help it. I don’t feel sorry for myself, or waste too much time thinking these thoughts… but the reality is that these feelings are here and I guess I should recognize and honor this part of my experience once and a while.

So that is what I’m doing.

Thanks for reading.

~Amy

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Blogdentity

I’ve been thinking about what defines me and who I am in the digital world. The whole is, of course, not the sum of my parts -or my usernames. As I explore my definition with MS, a mom, a wife, a daughter, an instructional designer, a blog-journal-ist (not to be confused with a journalist) a friend, a lover, a partner in crime… as any of the roles I play out during my everyday- I’m looking more specifically at my digital presence. Who am I in this world and does it translate to my virtual experience? The spontaneous, easily excitable-me, probably doesn’t come through here.. or does it? With enough probing, one might learn of my compassion for others, my desire to help those who need it and my hopes/expectations to make a difference in the world. But does it really traverse the pixel divide?

I spent as much time as was available after my home identity roles were brought to a moment of rest- (that moment comes a lot sooner than I would like as my MS draws the finish line in surprising places) I began reading MS blogs. (Am I defined by my run-on sentences?)

So, what was I saying.. oh yeah.. MS Blogs. They certainly run the gamut. Everything from
– what people are doing, thinking, and feeling at every minute of the day, to literary pieces that get me thinking. (see Merelyme‘s MS Blog and her further inspiring writing blog) And I’m left with the question: Where do I fit in to this spectrum? I’ve tried to make my entries a daily happening. I understand that increases readership – and I do enjoy knowing that my words are being read, yet I can’t bring myself to record every thought or move, especially when these thoughts contain nothing significant. (not that there is anything wrong with that!) I imagine that sharing at that level is very satisfying for many. It’s just that my internal editor is a bit of a hard-ass. Whatever the filter is that I run these entries through requires… requires.. I’m not sure what it requires, but I can tell you that its less animated, spontaneous and compulsive than the me in real time.

I use my full name wherever I can. When I comment in forums, when I post here.. when I register there. Even my login name is just an abbreviation of my full name. (amygtz) I just have problems constantly renaming myself as the digital world requires. I feel like it dilutes me. Hell.. I didn’t even change my name when I got married!

And when it comes down to it- an ID by another name would likely smell as sweet. Or would it? When we connect with people via a keyboard and monitor, even a rose would not smell sweet. So where is our identity online? In the real world- are we defined by the clothes we choose, the cell phone we carry, the songs we listen to, the expression we wear on our commute, or the style of our hair? To some degree yes; when that is all one has to go on. Well, digitally we have even less to go on. All we can consider is how clever your ID name is, and the words you type. Although, come to think of it, maybe its better that way. Maybe its more. Considering a person’s innermost thoughts without the superficials that cloud a first impression can be very powerful.

And when all is said (written) and done does it really matter? Do the words we type make a difference as they jet across the world virtually. Yes. I think they do. And when the unadulterated identity flies along with it, let it go. It’s so much more than the pictures we hold of ourselves from the childhood of our pre-virtual world. Those images tell a very small part of the message. Our usernames and blog entries will tell our future selves so much more. If they make it to the next operating system.

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Blog Blog Blog.. is that all you ever write about?

An obscure altered quote from the Bill Forsyth Scottish hit movie of 1981 Gregory’s Girl. That was back in 7th grade for me. I even remember when and where I saw it. (The Forum Theater in Metuchen, NJ)  An obscure reference to say the least. It’s not even among IMDBs listing of quotes from that movie. Yet, it continues to hog space amongst the old phone numbers and birthdays of people I will never speak to again. And of course.. those scars. Those MS lesions that have been accumulating for 20 years.  

I take about 30 minutes every morning to peruse MS blogs, and write in my own. (actually this is a new addition to my daily routine, I like to make public statements like that so I can commit myself to things!). I read over and over how people are living with this disease yet it doesn’t define them.  It makes me wonder.

I’ve mentioned that since I was diagnosed at 20 years old, MS underscores my every fiber. I speak of how it molded me and shaped me to be resilient and powerful.  It forced me to recognize that I can accomplish far more than I thought, neatly categorizing my life in to sections. Sections entitled “fear of uncertainty”, “pain of speculation”, “coping alone”, “coping while dating”, “coping through marriage, childbirth, Life stressors, advanced degree, business efforts”. Every stage and experience of my life has been punctuated by my MS and the unique symptoms it doles out regularly.  So, I hesitate when I read other people’s experience that “ms doesn’t define” them.  I’ve never been a grown woman without MS and I’m not sure who that person would be. 

Or maybe I can find that person with some effort, and I don’t want to. I teeter nervously on speculation. I can look at who I am along with MS. But when I even begin to look at myself without it.. for the sake of discussion… I only come up with points I’d rather not even consider.  It only serves to illustrate a loss. What I can’t do. What’s the point.

So MS does define me. It offers me constant daily challenges for which I work hard to rise to the occasion. To add strategy to my belt of coping and you know what? That empowers me for the next step.  So I won’t question my definition. I’ll relish in the me that has happened with MS. 

I’ll try that on for a while. In the mean time feel free to share your definitions of self.

~ag