Tag Archives: Walking Stick

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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.

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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!)

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Simulated Volatility~

For the last 5 days, I’ve been on a journey with a synthetic guide. I’ve taken this trip numerous times, but each one is different –The start, the course, the destination- all unknown. What is known is that where I was before I opened my vein was not a place to stay. The limitations were too great. These setbacks, albeit periodic have their own frightening rhythm. Is this moving toward a dramatic crescendo that will change my symphony of coping?

Tuning up the intravenous, all instruments at the ready, I succumb to an unknown melody. I tip back my head and close my eyes, hoping the song I’m looking for is part of the evening’s program.  And with a rush of anxiety the pic opens my vein and the first chord is strummed, falling to a silence that ends with a surprising lyric. And I wonder. Am I at the right performance?

Hooking the pump to my picc line I feel the cool fluid join with mine and for one hour I wait and wonder. Will I be hyper, hungry, agitated, energized, erratic, accelerated, overdriven, unable to rest, sleep, will I find the way to be me? I continue humming the tune that defies interpretation with in my limitation. When it’s gone- from my veins, my body, my mind and song, will I crash silently for an undetermined refrain? Or will I sing better than before, hitting notes not reached in years, when my voice was young and fresh, chords unscarred. With this synthesizer of health, I remember that person found in expected scenes, from performances long over- and as the volume increases I cover my face, plug my ears, refusing to hear, to listen. I won’t get lost; I can’t get caught happily singing, when ultimately I am stuck in the cacophony of what can never be again.

And as the show is ending, a scream erupts from the audience praying for an encore that won’t likely come. One last thunderous request is launched toward the silent stage, and the lights turn on and everyone gets up to go, except for that 20-year old girl. Whose hoping for a surprising finish- an unexpected, long and sweet tone that only she can hear.  But even before that moment, the theater sits in silence and she can hear whispers from back stage. She knows she must get up, turn around and slowly walk up the long silent stairs with her stick in hand. Hoping that whatever she finds when the drugs are gone, will be the familiar melody she sings silently in her head. Reclaiming that song that will carry her through the uncertainty of her future, of how she responds to every note to come no matter what the underscore. One that will bring the new phrasing of a self not forgotten and an important new measure to her composition. And without this guided journey, this opening of her vein, heart and mind, she would not have otherwise known it to be worth a listen.

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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!

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It is…no, it isn’t….yes it is.

Just home from the visit with the Neuro-Ears Nose Throat expert. After a brief synopsis of my almost 20 years with MS and balance issues…emphasizing the Vertigo of 1989 and ending with the most recent bout of dizzy/off-balance/ambiguity.

I am now told that contrary to the prior consideration that yes,  it is my MS.

Okay.

Not sure why I’m always feeling that I should have known, or seen any of this enigma disease coming. It’s because I’m constantly thinking and analyzing and trying to make sense, or have control of this lot in life. I think I’m hard wired that way. As fate would have it…this completely unique, totally variable and unpredictable condition is like a CarTalk episode stagnating at Stump the Chumps.

Just when I think we (me and my treatment team) have a handle on it… we turn out to be throwing hypotheses around the room haphazardly. And that leaves me thinking…meta-thinking actually.

If only I could sit back and let it play itself out.

I’m scheduled for a test with a Dr. Dai. It’s a visual/aural test that I am told will likely leave me extremely dizzy. I was instructed not to eat 1 hour prior. Vomiting is a common side effect of the test and they apparently prefer dry heaves over content.

Since my appt with Dr. Cohen, I have been very expilary (a word my daughter made up-meaning more than very) dizzy. Now I need to figure out how to get out of the city at rush hour while experiencing said dizziness.

Looks like a job for Dr. Verter!

more later….

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Sticking to it.

My dizziness has seriously improved. Dr. Verter comes through yet again. So, I have a much better position on the earth… not completely stable…but one that is far more secure than I began 2008 with. I’m not sure how soon after I left his office that things really kicked in for me. It’s a subtle and gradual process that has left me feeling completely different..in inexplicable ways.

So I began to reconsider my trusty stick. Do I still need it? My balance is by no means perfect, but that has always been the case. So I did some tests without it. Rode the subways…slowly walked up the stairs sans stick, and I realized what I think I already knew. The stick is an important announcement and a reminder. For the prior…the world at large is the audience and for the latter the target is me.

It has been a significant help to make my invisible condition..disease…identity (what is the right word here?) present…apparent… evident. People rise to the occasion in ways that I didn’t expect. Be it a subway seat or holding an elevator… In many ways it let’s the societal cream rise to the proverbial top. There is a lot of good out there and if people are given the opportunity, they crack open the solitude of commuter stance to reveal the person behind the mask. I hadn’t realized how much power there is there. It makes me feel good about the people I’m sharing the planet with.

Then of course there is a certain level of empowerment in taking charge. I thought that by using this walking assistant I was admitting defeat. Not consciously of course, but on a deep emotional level. As if I was making a statement to the world that MS has me in some way. What happened was really quite the opposite. The stick has given me power. The power to bring out the best…and the confidence that I can walk farther and faster without kissing the sidewalk.

There is also the reminder I aforementioned. It reminds me that I’m not the same. That I do need to take special considerations. That I need to slow things down and be more concerted in my efforts. And although I only use the stick commuting in and out of my building at NYU it has encouraged many conversations with people about Multiple Sclerosis. People who I’ve worked with for almost 5 years that had no way of knowing.

A common response for so many people is “Oh, you must have a mild case that doesn’t affect you then”. To which I explain, My symptoms are every day, all the time- it’s just that they are invisible. Sometimes I say more, sometimes less…but everytime I feel as though I’m educating one more person about the many faces of this disease. Adding to the list of people they know with MS, hopefully making it easier for the next person they come in contact with.

This walking stick is as so many things. I’m not sure I’ll ever give it up. I think I’m starting to love it.