London Calling: How I Learned to Stop Worrying and Love (the) Gigi!

I went to Europe. Really. I did. I never thought it would happen. I mean, with our enormous student loan debt we never have extra money for luxuries such as a vacation. But lucky me! I’m the granddaughter of Beatrice Goldstein Kaplan. She came to America in the 40s and left all of her wonderful family in London for us to play with.  And as a result we are in no short supply of fabulous British cousins always telling us about their comfie spare rooms and how nice we will look in them. But without tickets to get across the pond it didn’t even seem worth thinking twice about.  So when the opportunity came up to think twice, I realized that money wasn’t the only reason I resisted thinking twice.  No, the money (or lack there of) was a helpful way to avoid the other reason for not considering this vacation. That being the one that hides underneath every moment when living with an incurable, unpredictable, potentially progressive disease.

About 3 years ago, my 20+ year old MS started acting out beyond it’s normal behavioral issues. Symptoms heightened and I shortened. (And I’m only 5’2″- so I don’t have much to work with here!) Over these past years I’ve been challenged by constant dizziness, greater limitation in my ability to walk and worse of all, an inability to stand for lengths of time. Like- for example- long enough to cook dinner. But as all of us with MS do- I found new ways to cope. Not-to-say that any of it is easy. These changes are always emotional ones. But when all is said-and-done, I have found a way to live within my limits-de-jour. So long as my expectations of the day are low and I have the “bright-side” handy when I need to break it out, – I can deal.  Sorry I left the kitchen such a mess honey…you know….i have MS 😉

So when the possibility of venturing across the pond became a reality I went in to high-gear worry. I would have to come out of hiding and face the fact that I am now “it.”

Not long after our tickets were booked we started realizing that we have other close connections on the mainland. (that being Europe) Our lovely former neighbors moved to Berlin and our friend knew someone who has a great place to stay in Paris. Now how could we possibly make that voyage and not take advantage of these opportunities. But in the back of my head I’m thinking, If we don’t do it now we may not have the option when I’m less able. Oh wait. Not when; should I become less able. (Phew! Found that bit optimism in my back pocket!)

And though my adorable college professor husband doesn’t earn the big bucks (“even though we aint got money“) we do have summer vacations! So we reserved August for what we hoped would be an amazing trip.  And it was all that; for reasons planned and unplanned, expected and unexpected. And I learned a lot more than the detailed history of the Berlin-Wall falling or how something called a Shandy is a great way to experience an English Pub with an actual beer product in hand.

* * *

Tune in next time for the second episode in the series “London Calling or How I stopped worrying and love GiGi” when I will discuss my experience with MS, accessibility in Europe and my new love for GiGi – replete with photos evidence for all of the afore mentioned.!

(BTW: If you subscribe to this blog- you will be notified of when that happens. I’m thinking this weekend.. but who knows!)

Destination Unknown

While you are in the midst of pre-holiday scramble, take a moment to read my latest essay on Health Central’s MS site. My seasonally non-specific December post will not only give you a break from the stress of the holiday prep crazies, but it will also put your life in to a comparative perspective that may be comforting at the time of year when we all take stock. But that’s just my speculation. Go decide for yourself.  And return to your previously scheduled “holiday crazy” with a new perspective~

Destination Unknown

If you are reading this post, chances are good that you’ve been diagnosed with MS and have your very own diagnostic tale; a “Where were you when you heard about Kennedy, Lennon, Cobain” story. It’s often the first exchange when two people with MS meet.  “Diagnosed, 1988, only took one week after my first symptom,” or “Diagnosed last year after a decade of unexplained symptoms and dismissive doctors.” No matter how our stories differ, that day puts us on the same train; the one with no clear destination or announcements along the way to keep our bearings. (more)

This just in!

Health Central has produced some terrific Multiple Sclerosis videos over the years that are a must see.

And here is my contribution:

While you are there, check out the other offerings of the site. The conversations going on in the MS community are not only informative but are often soothing. It’s good to know that you are not the only one dealing with it.

Enjoy and spread the link. * Full discloser:

*This was a challenging shoot (4+ hours). I think I slept for 3 hours after all was said and done. Kudos to the camera man and the editors who made it seem like a smooth conversation!


I’ve been trying to come up with the words to describe this for months; though come to think of it, it’s probably more like a year. This inexplicable thing has been bouncing around my head, periodically coming together to make a sentence and then falling back into individual words that I can’t remember or feelings I can’t explain. It seems fitting to have this figured out before the year’s end. (Which happens to be moments away.)

So here goes:

For me, living with MS is a fluid experience. My changing abilities wash over me like the tide and leave me disoriented. My body defines and redefines itself with the ebb and flow of my disease and my emotional response is a balance of denial and strength. The current pulls me around as I’m dodging fears and rising to the challenges to keep moving forward. I search for solid ground to find perspective. But until I get there, I forget what normal is.

Each day rolls into the next with changes that are often very subtle. And after more than two decades with MS, I have learned to accept what is for the day, the week, the month. I don’t spend a lot of time examining the specifics of how I feel. I just cope. And part of that coping is to avoid looking at the big picture. While “I’m soaking in it,” I can’t see what may be obvious to others.

See how confusing this is? I feel like I’m contradicting myself! Ok, let’s back up a bit.

My symptoms fall into two categories. There are those that I’ve dealt with on a daily basis, since I was diagnosed. Many of them are manageable with my prescriptive cocktail, others I have learned to live with.  For the sake of the metaphor, let’s call those symptoms Barnacles. The second category consists of the symptoms that come and go and come and go. Let’s call those Shells. Oh wait, did I say two? There are actually three categories. The third is the attacks. (Okay, I could go all shark metaphor here, but won’t over-do it!) The sudden onset smacks me with an unexpected wave and leaves no question about what is or isn’t usual. And while I am afraid that some of these new symptoms may go barnacle, I rarely lose sight of who I am outside of the relapse.

So, here are some examples of the parasitic barnacles I live with. Including, but not limited to: foot drop, difficulty walking, dizziness, poor balance and hmmm, what are those other ones… oh yeah, incontinence and an inability to pee. How could I forget them!?! These tenacious little buggers have been clinging to me for so long that I can’t remember a time when they weren’t a part of my everyday.

So you ask, how does this fit in to the inexplicable-thing category? It’s those elusive shells. They roll in and roll out and as I chase them up and down the beach, the water overtakes me and my defensive denial kicks in. Leaving me even more dizzy than usual. When I finally resurface, I can’t tell where I am.

I’m getting lost in metaphor. Maybe a real example will better convey what I’m trying desperately to say.

This year I noticed that I couldn’t stand for very long. The amount of time required to load the dishwasher or heat up a microwave feast eluded me. And because it came on so gradually, I barely noticed it happening. As the months went by, my standing time continued to decrease and all of a sudden I stopped and scratched my head. Have I always been this way?

From the outside this must seem ridiculous. How could I not know that this debilitating symptom is out of the ordinary? As I speculate further, I find myself standing in moving water. The next thing I know I’m submerged in a tide that was at my ankles a few moments earlier. And as the water touches my chin, I tread, trying to figure out who and where I am.

It’s usually my husband who reels me in. He helps me find perspective without lingering on the thoughts that are counter-productive in my coping. Realizing that this symptom isn’t a barnacle, set off internal fireworks over the Hudson.*

So the year is at its end. The next one is imminent and as is the case for all of us, I have no way of predicting how the tides will turn. Maybe now that I have the words all together in one place, I will be less likely to go adrift again. Though I must say, denial, when used reasonably, can be a very comfortable flotation device.

*Oh, and btw, “my long-standing-ability” has greatly improved or “How I learned to stop worrying and love the Ampyra.” Does anyone get that reference?)

Stick Semantics

Until January of 2008 no one could tell there was anything wrong with me. Every day I left my purple house and crossed Park Street to stand on the Watchung Avenue platform and take the Midtown Direct to NYC. At Penn Station I walked up the stairs and then a few blocks, then down the stairs and up the stairs and down the stairs, and up the stairs and one block to my office. And while this was a challenge, it was something I was proud to be able to do. I have had Multiple Sclerosis since my 20th birthday. Walking and stair climbing has always been an effort for me. MS has robbed me of balance, coordination and stamina. Yet in spite of this no one would have noticed that I was different from any of the hundreds of commuters that move as one.

When dizziness was added to my MS symptom buffet, everything changed. With an increased unsteadiness even the most basic things were not a given and the commute was more like an outward-bound adventure. But I loved it; being part of this mass of silent people moving in unison toward their destination. I knew if I wanted to continue I would need something to ground me. But what were my options? A cane? A cane means old, disabled, infirmed. I’m young. A cane just doesn’t fit.

So I didn’t get a cane, I got a walking stick. Don’t get me wrong – it’s a cane, but I call it a walking stick.  So I got it home and tried it out, and the internal debate began. Could I make this part of who I am?

I was just about to turn 40 and though I had been living with a different-ability for two decades, I didn’t announce it to every one I passed. A cane, excuse me, a walking stick would do that. So I pushed myself like a kindergartener on the first day of school. Forcing myself to be outed, to show the world who I really am.

What I didn’t know at that time was how empowering this decision would be. I thought that by using this walking assistant I was admitting defeat. As if I was making a statement to the world that MS has me in some way. But what happened was really quite the opposite. The stick has given me power. With this visual recognition I brought out the best in the people around me, who treated me with concern. They recognized I had more to contend with than the average commuter. And with that, I learned how to walk proudly while carrying my big stick.

~This short essay ran in the Montclair Times during MS awareness month.. that being now!

I can’t play hopscotch

This week I’ve connected to a dear friend, I haven’t known in two and a half decades. And with this re-connection I find myself addicted to a Penseive-like journey that has revealed immeasurable emotions in addition to an opportunity to become reacquainted with my healthy young self. With remember-whens and photos of me that I’ve never seen, I find myself immersed, unable to look away. This need has taken on addictive qualities that are making it difficult for me to get back to 2009.

In the midst of this journey, I went outside to play with Madeline. With  joy easily found in this early spring day, we combed through the list of things she’d likes to do- those special things that she hasn’t done during the cold winter months. And while her usual outdoor playmate worked diligently inside, we searched for what I can do instead. (tag- no, obstacle course- no, jump-rope competition-no, hula hoop-no.) And though I was able to talk her into drawing on the drive-way with last year’s nubby chalk, it clearly wasn’t on the top of her list.

We held our noses because a skunk sprayed our car last night, and I tried to engage her with a drawing of the culprit, though it came out looking like a turtle. (nubby is an understatement-and you may not have noticed but a skunk has some pretty fine features)

“I know mommy, let’s draw hopscotch and we can play that together!” “Ok” I said, just assuming I could. It’s like a language one never forgets, right? And while she was bending and turning in ways that would evoke dizziness in me, I stood by and serenaded her.

What a day this has been, What a rare mood I’m in…why its almost like being in love

“Mommy, I don’t like love songs, sing something else.”

“Okay,” I said, “how’s this… I’m here, to remind you of the mess you left when you went away.. (an inside joke that only I could appreciate)

“No.” she said blankly in her cute sarcastic way (she is definitely my daughter!)

So I launched into the songs I sang to her as a baby, most notably Madeline Beatrice Adams-Gurowitz sung to the tune of John Jacob Jingle Heimer Schmidt. And we laughed as she finished the hop-scotch board.

With the joy that is reserved for single children, she went first, and second, and third. ☺ Then it was my turn. I grabbed the stone with optimistic confidence and started on a task that was at one time as natural as breathing. And though it was clear with my first hop,  I pushed on. As I jumped, I edited the film in my mind, cutting between my yearly neurological exam and each hop. A visualization that is so strong, I will remember it as if the scene played out in exactly that way.

When I was done, I sat with the realization that this simple little game is exactly what I can’t do. So I watched her for the rest of the time… counting and clapping. And while I’m sure she enjoyed the attention just the same, I withdrew to that faraway place that has consumed my last 9 days and that picture…. lying on my side, with head in hand and the classic smile that lives with me today. It’s no wonder that I’m stuck in those early years with my dearest friend from a healthier time; a me that feels simultaneously so far away and so close. I don’t want to come back. Yet I know that if I don’t find a way to absorb this feeling and make it my own, in my current day… I won’t be able to laugh with Madeline on the driveway singing songs that are mine (Alanis) and her’s (…her name is mine name too).

MS SoftServe and other distractions.

The progress of MS SoftServe is slow and steady.

As I work towards the immediate goal of editing the interview footage that will support an explanation of the site, I am seeking the balance. It’s a balance many struggle with. Full time employment (administrative staff at NYU-Tisch Film and TV), home life with my husband ( a photography professor and artist) my 6.55 year old daughter in first grade; a welcome distraction with homework, games, violin, conversation, reading and must see movies. (Horton Hears a Who ) Oh yeah, and a certain amount of maintenance :). And of course Multiple Sclerosis, something most of the people reading here can relate to, throwing in a new challenge on a daily basis.

Yet secretly, behind the scenes I’m editing and writing and planning. Sometimes it’s not in a tangible way; sometimes its progress that is only evident on a neuron-ic level. Keeping company with my myelin, or in some cases a lack there of :), it is progress that I can be excited about.

On a more obvious level I am working to start my consulting business SoftServe Central- Educational Concepts in Online Learning. Using my expertise in instructional design combined with almost 20 years of MS (come June 2008) I consult on how to design ideal education for those of us with this label, this lot in life. How to speak to us, the patients in a way that recognizes what our experience is and that we are unique individuals in spite of a common diagnosis. To explain how to connect with each of us with our individual version of this disease without alienating any one of us.

I’m also in the final stages of developing a non-profit organization called SoftServe Matters (grey matter, white matter, your funding matters!) whose mission is to create educational websites for individuals who need to learn about any disease in a customizable, reduced anxiety way.

Then there is my blog and the greater world of MS bloggers. I would love to sit all day and read and write. I want to tell the bloggers I’ve read (and continue to read) how significant what they are saying to is to the MS world and the greater world of people who also happen to be patients. I want to connect to more people, who like me and many who I have met, struggle to learn about their constantly evolving unique version of MS at a safe place that to be confident we aren’t going to learn about things that aren’t relevant to us; facts that will cause anxiety about our uncertain future. (I want to edit that last run on!)

I want to work on MS SoftServe, a solution that is waiting patiently for funding

I have to keep this hope and desire quiet while the rest of my life happens. I need to find balance. Don’t we all.