Category Archives: Sticking to the Stick!

These articles detail my experiences deciding to use a walking stick and how what started with great apprehension, became an empowering decision.

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I gotta new way to walk (walk walk)*

The place where it all began...

The place where it all began…

Last week I took home my brand-new pair of Walk-On® foot braces– though I prefer the more fashionable phrasing, “assistive foot accessory” 🙂 It all started about 6 months ago when I signed up for physical therapy at Kessler Institute for Rehab here in NJ. It didn’t take long to feel improvements that reached well beyond the muscle-strengthening, balance-increasing, core-engaging milestones. Just taking this pro-active step made me feel better. Not to mention the positive influence of having someone (a.k.a Liz) cheering me on for even the slightest improvements. We should all have someone who plays that role in life, dontcha think?

In addition to this twice a week cheer-lead gig, I have been part of the Kessler’s Wellness Program for PWMS and I can’t begin to tell you how it’s changed my life. It’s funny how the ability to learn is so contingent on timing and circumstance. (Considering my MS SoftServe mission you’d think I’d know that by now!)

The Cheerleader and The Cheered!

The Cheerleader (Liz Woods) and The Cheered (me)!

So it was at one of these sessions that a physical therapist (we’ll call him Joe, which is in fact his name!) talked to us about balance strategies. It was basic stuff that I hadn’t considered; like how to stabilize oneself by pressing the outsides of your feet to the ground. Smart right? Then he spoke about the assistive devices. In addition to balance and dizziness issues, I have intermittent bi-lateral foot-drop. i.e. I pick up my foot, my toes drop and then I do. It happens unpredictably on both sides and gets worse as I fatigue. This reality makes for some serious apprehension with every step I take. And even with the added insurance of a walking stick- I continue to fall. And every fall is a fall too many. (Especially when it’s in front of my daughter- that just sucks!) As far as assistive devices, I thought I knew what was out there. I had heard of the commonly used device – the one that sends an electrical signal down your leg prompting your foot to lift at just the right moment. I figured if things should get worse I know it’s out there. And after all, my foot-drop is intermittent and occurs both of my feet. What was I going to do? Wear a brace on both feet?

Yes… apparently I’m doing just that! When I learned about the variety of braces- each offering different degrees of assistance and all different degrees of unassuming, I realized I need to revisit this. So I did at my next therapy session. Liz sized me up, made a recommendation and sent me off to the brace clinic- also at Kessler.

While I waited for my appointment, I continued to doubt myself. Is this something I really need? I mean, I don’t have that bad a case of foot-drop… Well that feeling lasted for all of 10 minutes abruptly ending with my pre- and post- brace walk demo. As soon as I heard all the oohs and ahhs from the cluster of experts watching me from behind, I knew that this is going to be a huge improvement I my life. I hadn’t thought much about my apprehension in walking and how much energy I wasted on making sure I won’t fall.

My brand new assistive foot accessories!

My brand new assistive foot accessories!

When I took those babies home I looked and moved like a different person. I found an audience in my family ooh-ing and ahh-ing with every sashay & shantay. And while I was concerned about getting caught up in the feeling of “OMG, I have to wear these things to walk well?” I am completely distracted by the whole “OMG I can walk so well with these things.”

And they are oh so subtle. One might not notice unless that one happens to be on the ground and spots the carbonate strip running down the back of my calves. And who does that!?! 🙂

After 25 years of living with this totally-unpredictable, completely-incurable, constantly-changing disease I thought I had a pretty good handle on managing it. But managing one’s MS is not unlike a cat chasing the red laser pointer dot that disappears just as the paw is closing in on it. Apparently I’m gaining on it!

*If you don’t have a person in the house who has watched Sesame Street in the last 1o years then you probably aren’t singing this title like I am. And because I find the tune oh- so-necessary to properly express my enthusiasm watch this.

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advocating from within

ad⋅vo⋅cate [v. ad-vuh-keyt; n. ad-vuh-kit, -keyt] verb, -cat⋅ed, -cat⋅ing, noun- a person who speaks or writes in support or defense of a person, cause, etc.

Living with a chronic illness can be challenging on so many levels. In addition to being physically and emotionally compromised, we have to step outside of it all and advocate on our own behalf.  Depending on the symptoms of the day and the emotional state that goes with them, it is often impossible to make the right decisions. Especially when we can’t always see clearly what is happening. And while many of us have family members who advocate for us, they too are experiencing the emotions of our coping and may not have a clear perspective of what needs attention. I’ve always said that in a perfect world we would all be assigned a “primary care advocate.” A person would guide us through our needs and provide solutions in a way that only someone not in the midst of the coping can do.

Last week I visited with my dear friend Linda who is fighting cancer and saw first hand the importance of having an advocate. We spent good time together, recounting special moments and creating new ones. I had no specific agenda for the trip. It was great to be with her and offer more than virtual love. I held her hand, kissed her face and listened to the messages that can’t be sent via the phone or computer.  I hoped to make her laugh and she me as if there was nothing but the two of us in the room.  For this to happen we would need to find moments for her to be pain free. Linda goes from serious pain to happy and adorable in the flick of a switch. It’s incredible to watch. Of course the same happens in the reverse when that antagonist re-enters the room.  This battle is constant. There was never a long enough window of time for her to think clearly. With no opportunity to look at the big picture, how could she represent?

I spent this first day attentive. Watching her press the button to send an extra surge of meds to relieve the increase in pain. All the while working hard to stay awake, get rest, care for her little one and eat. The latter of which is the hardest. She desperately needs to put on weight, but eating is very painful.  I kept reminding her to hit the button at the slightest discomfort and as a boost before and after meals. It’s amazing how hard it was for both of us to remember. Her expression was the prompt, but we looked for an earlier cue to preempt the pain. It was already clear to me, how my being there was helping beyond the distraction of good company. But it wouldn’t be until the next day that I could really see the role I filled so easily.

Monday morning I joined Linda for her Dr.’s appointment. We were quite the pair. She – walking gingerly with her pain pouch in a bag over her shoulder, tube running in. Me- with my walking stick, deliberate in my navigation while holding her arm. Moving around the hospital, it was unclear who was supporting whom. Of course the reality is we were both giving and receiving in complementary ways. Like the last piece in a puzzle that didn’t look like it would fit, but once in place completed the picture perfectly.

When we made it to her meeting with her nurse practitioner, Linda reported on her experience since her last visit including her pain level and how often she needed to hit the button.  I was surprised that her report didn’t match what I had witnessed the day before. She is a stoic, strong woman. I’ve watched her endure a lot more than most could handle. At first I hesitated to interrupt, but as the exam continued I knew I had to say something. When I did, her nurse suggested that they increase the pain meds and as Linda resisted, I saw myself.

I know the feeling of not wanting to increase my drugs for fear of the long-term implications. The thought of being reliant on medication- pills or liquid being pumped into your veins for the long haul is not an easy concept to digest. In Linda it looked more like a fear of submission or failure. So I questioned her nurse to say what I hoped Linda needed to hear. They were the words that soothed me when I had a similar struggle. “What dosage are other patients using?” As her nurse counted into double digits, I saw Linda’s face calm a bit.  It helps to have perspective. I was her advocate, moving in to that role with ease. A role that I could never be for myself.

During my most recent MS attack, my husband and I were discussing some “what now” options. During that conversation he told me things that he never had before. Apparently he had been living with a great deal of stress in his concern for me. I was commuting to NYC, working a full day at NYU and coming home too exhausted to function in a meaningful way. My worn-out self did not the best mommy make. He never mentioned his concerns before because he didn’t want to take the wind out of my sails. And my tendency to persevere in spite of it all prevented me from seeing the reality playing out in front of me. I’m glad Keith was there to show me what I needed to know. Looking back I realized that this wasn’t the first time I needed someone else to point out what couldn’t be clear in my mind.

It took way too many times kissing the NYC streets for me to recognize that a walking stick would help me to navigate my world more safely. The foot-drop combined with a shot of dizziness is the perfect cocktail for scraped knees and a humiliated ego. But I always assumed that if I needed a stick, my Dr. would tell me. This was my frequent retort to my mom’s gentle (yet sledgehammer-like) inquiries.  A walking stick felt like a progressive failure to me. As I waited for my doctor’s recommendation- I endured more falls in denial. When Keith suggested considering it, I couldn’t ignore the evidence anymore. I knew intellectually the benefit it would provide, but I feared how it would speak to me, about myself. I didn’t know who I would be with a walking stick and I was not interested in meeting that person. Keith helped me move past it. He suggested that I treat using the stick as a social experiment. (Just How Nice are Those New Yorkers?!) And that concept empowered me to go forth.

The irony of this whole scenario is that when I went to my doctor’s office shortly after this decision, he questioned why I was using the cane. He said based on my exam there is no evidence of need. I couldn’t believe something that took so much emotional fortitude to accept was being questioned by my doctor -who, btw is a premiere MS neurologist worldwide. Nothing showed up in my exam to indicate this need. Of course he couldn’t recreate walking 3 blocks, become fatigued and dizzy and have my foot-drop kick in. I guess more detailed questioning would have unearthed this evidence.  But as they say, the doctor treats the disease and the nurse treats the person. After that appointment, I witnessed again, what I already knew.

With 21 years of MS under my belt, I like to think I’m an effective advocate for myself.  In many cases I am. Though my mind must play a fragile balancing act. And as I struggle to navigate past the information that fuels my fears of  “what if” I know I’m running the risk of missing something that could be very helpful. With Linda I felt inexplicable strength based my own experience in the doctor’s office. Knowing what my needs are, I easily stepped into the role of advocate for her. And in her, I saw myself. I was that patient – from the outside looking in and I knew exactly what to do.

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A Genetic Predisposition

Since the time I began to carry a walking stick I’ve gone through some remarkable emotional journeys. What at the beginning compromised my self-image became something entirely different. Before the stick, many had no idea I had MS- or what MS is for that matter. Announcing to my world that I struggle beyond what can be seen at a first glance, gave me the opportunity to educate. It also gave me a chance to represent; showing that some people with MS are walking invisibly among us.  What I feared at first became an empowering experience that keeps on giving. And thus is the reality of living with MS. I’m constantly living through symptoms that I never imagined I could handle. So when this experience – using a walking stick for balance and to avoid tripping- and falling- turned out to be so much more than that, I shouldn’t have been surprised.

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I’ve always been compared to my mom. When I was growing up no one could tell our voices apart on the phone and the “Oh my god, you look just like Vicki…” was a constant chorus at annual family events. As I got older we heard the comparisons more and more. When we both chose the same short hairstyle, the similarity was uncanny.

My mom has always been a fireball. Not only does she have more energy than the Tasmanian Devil but she also has the inspiration and drive to make most anything happen. Her talents are endless; from cooking, to drawing, painting, clay working, computer designing, everything she touches is stunning. And of course she does not recognize this. (Wait a minute… this reminds me of someone… ) She gives new meaning to the word creative and it explodes all around her. When I was growing up she was a puppeteer and art teacher and thus our world was filled with a creativity that made everything more special. She put little drawings worthy of framing on our lunch bags. Each one, folded and stacked in my 4th grade desk; an archive in the making.

Being a child of such a super-woman made for a hard act to follow. And while this comparison was self-induced-  I was intimidated by her natural ability. What I didn’t have in conventional artistic talent, I later found in filmmaking. It then became clear to me that the creative environment I was raised in, laid the foundation for my own expression. And though we don’t share the same energy, “enthusiastic” is an adjective that often falls near my name. We both got a piece of that gene.

When I was diagnosed with MS at 20 years old the internal comparisons came to an end. This label suddenly separated me. I had a new path with uncertain obstacles. From this point on, I could only be me.

In the beginning MS marked me with intense fatigue. And in doing so, my personality was threatened. It’s hard to explain, but I will try…I might be sitting at the table after dinner and where I would normally jump up and assist in the clean-up, I could only sit. Even lifting an arm requires energy when you have that level of fatigue. Even thinking requires energy. My entire presence changed. Truth be known, this is the scariest part of my MS journey. Though I continue to manage my MS in the most positive way possible, I no longer held internal expectations that any child finds in their parent’s shadow.

As the years passed I realized that in some ways MS wasn’t all bad. It requires me to slow down how I live life. This reason for not doing a hundred million things at one time, allows me to see and feel the moments that many miss. And as I have watched my mom’s continued energy and accomplishments I secretly (or not so) hope that she too would chillax a little more.

When the walking stick became a permanent fixture in my every step, I felt odd going places with her. This wasn’t entirely a new feeling. I think as my health became compromised my need of her support increased at a time when I would have been very independent. She is the one carrying the heavy stuff, offering me a seat when there is only one, or dropping me off near a store so I need not walk too far. I felt self conscious when we were in public for all to witness this paradox.

Overtime my connection to her has maintained its significance. When we purchased a house together (with our husbands!) we set up a situation where we could come to each other’s rescue easily and often. And while many of my friend’s parents are retiring, my mom has only expanded her involvement professionally, artistically and personally. So at this point in our lives the paradox of my visibly challenged health is even more striking.

Then everything changed.

My mom’s ticket to a low-key-life like mine, came in the form of a diagnosis. Plantar Fasciitis – a chronic condition that causes dramatic pain in her feet. Although she kept it from me at first… not wanting to complain with all that I have on my plate, it was quickly evident that she was in full coping mode. And this gave me an opportunity to see where my abilities come from.  I got a first hand look at the stoic coping that I do, 24/7 exhibited in my mom. For so long my MS has separated me from this comparison, now finally it comes full circle.  And wouldn’t you know it? My mom started using a walking stick! Geez… talk about a full length mirror!

When she went on a trip to Great Britain over the summer she purchased some better-for-your-feet funky shoes (in a cool trendy way-as opposed to the old stodgy way) and a walking stick which made her pain more tolerable. She is amazed how much a third connection to the ground takes pressure off the first two. And thus, she learns from me.

I didn’t think too much of it, until we took our first trip together. Venturing out to peruse the Montclair Farmer’s Market. There we were, two women looking oh-so-similar walking with canes. It is hard not to consider how this looks from the outside, although there weren’t many overtly looking.   ~So  I pause as I consider how much she inspired me all of these years and how much she has given me. I’ve always been aware of the strength with which I cope with MS. While I knew somehow that this perseverance came from my mom, it became strikingly clear when she too made this transition. And now I wonder if she felt more comfortable making this decision because I laid the groundwork, so to say. If my 41 year old daughter can use this, then so can I! I’d like to think that I inspire her, in the way she has always inspired me.       I’ll run upstairs and check.. brb!

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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.

Amy and Madeline Representing!Representing!
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The Language of Motion ~

Most people move without thinking much about it. The turn of the head, the lifting of a foot, crossing a room to get the newspaper- each done with the ease and brilliance of all the body’s systems working in concert to achieve a simple goal. So when that which is involuntary becomes impossible – it affects more than the nerves and muscles that are working hard to regain their normal role. It is more than that which can be scanned or examined. And while explorations of the mind will get you closer- it remains untouchable. In fact many of the nuances are unclear to the person who houses the defective control system that is known as MS.

So when the dizziness I’ve been living with since December 2007 began to increase, I didn’t think too much of it. Every day brings about a different experience of how I interpret and move in the world since that winter episode a year and a half ago. While I may wake up dizzy-free, the sensation is usually found not long after by moving in ways that are subtle and hard to predict. It has become the most visible challenge of my 21-year MS ride. One that forced me out of the closet with a walking stick- in to the role of an MS educator of all those who didn’t otherwise know. And while I have found surprising comfort in that new character – I’m constantly reinventing the part, rewriting my lines and finding my place in a play that is different every day. And in this re-staging, I consider motion.

The language of motion changes in me at every moment, in what is spoken out loud in my movements, or silently in the evolution of my awareness. It is a constant monologue. I have limits in how I move in the room that are exaggerated when I step out my front door. But the script of my inner workings know no bounds. So while at most times I can’t remember the lines required to make a simple gesture easily performed by the entire audience, I soar on the inside and thrive in my limitless awareness and understanding.

As I take my fifth steroid IV treatment, for an attack that crossed my 41st birthday/ 21st anniversary with MS, I wonder how fluent I will be, and how much my dialect has changed. With these high doses coursing through my veins, I find synthetic energy that is both wonderful and frightening. I’m no longer searching for the words and expressions to make simple movements across the room. And while the dizziness remains, I search for an interpretation that will allow me to get back to where I was before this episode. Though I know I must also consider more challenging thoughts.  I may need to start with a blank script and  a different role in this new production.

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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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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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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.

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yes i CANe

So the normal disclosure… if you’d rather not hear details of my MS experience that may make you uncomfortable about your uncertain future… consider yourself advised.


I’ve been using my walking stick for almost three weeks now. It didn’t take long for me to get used to having it around…and to learn how to juggle it with my commute gear. My backpack, my water bottle, my reading material, my ipod, my train tickets and then Metrocard. It takes some practice..but I’m finding the rhythm.

I’m move back and forth between considering what my needs are and how I am perceived. It shifts from day to day, minute to minute and scene to scene.

What started as a strange feeling that I am perceived as someone who is faking it… evolved into a better understanding of why I need this. Because I clearly don’t have problems with my gate (unless I stumble with a foot drop once in a while) it occurs to me that it almost seems unnecessary for me to be using it. I felt questioning gazes that I answered for the first two weeks with a sticker I put on my cane that read “I have MS”. The gazes turned to squints as subway passengers sat across from me looking my way.

I was reminded of the attempts I made as a young person (middle child) searching for that extra attention. The ace bandages and slings on perfectly normal arms, wrists and ankles. The troubled looks beefed up by eight year old winces wanting to stay home for a little extra mom-time.

But this was legit. Even though I was using the opportunity to examine how people treated me with this implement… I legitimately need it. It wasn’t a show.

As I got used to carrying it… and using it to provide extra support I found that I was able to move quite quickly with it. It seemed that as moved with the crowd people would frequently bumpt in to it, kick it, and one time a woman actually pulled it from my hands (inadvertently) when giving it a “flat tire”. Very apologetic of course.
During this time I questioned my role with the cane further. When leaving and arriving at work I had it with me and people I interact with daily expressed concern over my well-being. Most don’t know I have MS. My response to their concern changed over time. What started as a sometimes detailed explanation (I always try to educate whoever I can about MS) became “I have balance issues”.

It was a funny coincidence that during this period the Science Times had an article that described a more dramatic situation than mine. ( PERSONAL HEALTH; A Stable Life, Despite Persistent Dizziness – New York Times JANE E. BRODY)
Somehow finding this explanation helped me to identify myself in a more comfortable way. And even though no one asks me why I’m using it, I tell myself throughout the ride. “I have balance issues” and somehow that feels good. Not, “I have brain damage”, or “I have an uncertain future” just balance issues.

I like that somehow. I can own it. And the cane… just shows that I have more to contend with than the average joe (or jane..as it were) commuter. That works for me too.
more later…

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Stick to it

I’ve been using the aforementioned vertical stabilizing instrument for 1.5 weeks now. Like my husband suggested, It is the initial phase of a social experiment; one that I am also a test subject of. This technique might be inappropriate for anything to be considered statistically significant…but for me it removed the overarching fear that I’m progressing. The data it did provide was unexpected- on many levels.

 

 

Phase 1: The issue of how to make this stick work for me.
Stripping away all of the emotional implications, I had to consider how I was going to schlep this additional item during my concrete jungle expedition. I imagined it in four stages. The first was walking out of my house and across the street to the train station. There were many possible places that could now could be viewed as obstacles in the first jaunt alone. I had to get down my stairs, and cross the street and then get up the stairs to the platform. I did this pretty effortlessly most days. Of course when my balance became compromised it changed what is the default normal. When this episode began it was the snowy ice period of January just to kick things up a notch.

 

I had seen my new physical therapist who trained me on how to use the stick…as if one foot/leg is weaker than the other. It wasn’t the most intuitive process…and I quickly realized that it wasn’t compensating for my unpredictable foot-drop. What I was doing was adding a limb to confirm my connection with the earth… a tripod of balance. Once I figured this out, I became be less rigid in the process. I began to move the cane back and forth between hands as I needed it- not forcing myself into a regimen of usage that felt more military than assistive.

After a few days… I became emotionally comfortable carrying this thing around. When I was seated, or it was in the way… I magically folded it up and stuck it in my back pack. When the time is appropriate I would pull it out and it would snap in to place. Not unlike those collapsible magic wands that droop unless you hold them just right.

 

So with that check mark completed I was able to take notice of how people respond to me. Right off the bat there were some exceptions made on my behalf. Those New Yorkers aren’t had cold hearted as the movies would like to portray. On my first subway ride with stick in hand a young woman offered me her seat. Cool. When I walked up the subway stairs on the first day… hanging on the banister as usual—cane present but not used… I could feel the explanation of why I was talking so long…falling off of my back pack. This is very cool. For the first time in almost 20 years I had a signal to the world that I have something to contend with that goes beyond a first glance.

This is very interesting.

more later…