Tag Archives: multiple sclerosis

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Try to Remember~

When I took my daughter to her first singing lesson it all came rushing back. As she moved through her warm up scales, I leafed through the sheet music she had selected. For her, the songs of Wicked were a no brainer; she had just learned them at her theater camp this past summer and she already knew the words. Singing show tunes after scales was not something I had to Try (hard) to Remember. While watching her I remembered me- the pre-MS me- and “this ability” that didn’t change after my diagnosis.  It was here all along.

When I was a girl the music of Broadway was always vibrating through those cheesy fabric speakers on the console that sat on our green shag rug and took up no less than 6 feet of horizontal space. My parents loved this music and they played the albums until the grooves wore out. (For those of you under 30, that is a reference to the vinyl discs from olden times.) This comes as no surprise being that my mom’s dad (GP Aaron) was smitten with the musical and my mom grew listening to the  score that I knew so well.

Pippin, A Chorus Line and The Fantasticks were the soundtrack of my childhood. My sister and I knew all the words to all the songs and danced around the living room singing them at the top of our lungs. Though we only went to a handful of Broadway shows (A Chorus Line, Annie, La Cage aux Folles and of course Cats) that music was the fiber of my original family. And to this day my sister and I will break into song when a word prompts us, much to our husbands’ chagrin. 😉

In addition to a love of music those shows taught me some very valuable lessons. The first and perhaps most timely, was from A Chorus Line. “Hello 12, Hello 13, Hello Love” was a great conversation starter about the facts every pre-teen wants to know but is afraid to ask. La Cage introduced me to transvestism, an understanding made more complete a few years later when I saw Rocky Horror Picture Show. (Also a musical!) I recited the poetry of TS Eliot to a tune and learned about the travesty of war diluted by dance and song. And I’ll always remember the tiny play in a tiny theater on Sullivan Street where I found an instruction manual for sneaking around your parents to be with that first love. (Now that one really spoke to me!)

In spite of my compromised self image I continued to enjoy singing in the years that followed. When I entered high school, I immediately joined the choir and a year later auditioned successfully for both the acappella and treble groups. Of course by this age I could no longer find the reckless abandon that my living room afforded me. I was firmly positioned at level-8 on the insecurity scale of 1 to 10 [10 being most insecure :)]. And even acceptance into these advanced choirs didn’t help me feel more self-assured. So I took singing lessons hoping to find confidence. Clearly the issue would more likely have been resolved on a the couch and not next to a piano. Wow, I hadn’t considered that self-esteem indicator until I wrote these words. (note to self: call therapist!)

It wasn’t until I moved out of my house that I realized that not everyone grew up with a love of Broadway musicals. It’s funny how that works. We take for granted what we were raised with, assuming it’s standard fare. It was never more evident than when I was hanging out with college friends and after someone said “One” I launched into a very loud “….singular sensation, every little step…”  (crickets) Not the harmonic response I had expected. Just a silence filled with the wide-eyed looks and lifted eyebrows punctuated by an “alrighty then.” But all the while I could hear Grandpa Aaron singing in my ear; a voice of approval for this mutual love that he passed down to his daughter and she to hers.

In the 22 years that followed I never thought of singing again. Not once. Maybe it was because I was distracted by my MS can’t-do-list which was growing and after all, singing never held a strong position on my can-do- list.

But recently, I’ve learned that I can do more “performance” than I could even have imagined. I now host an MS radio show, write a blog and am the outspoken founder of the non-profit, MS SoftServe. Once its live it will be the first individualized learning website that grew out of the Master’s degree I never thought I was smart enough to get. Ironically, with MS I have found an expertise that has ultimately given me a confidence I never knew possible. And it only took me 23 years to get to here. 😉

Madeline and I are sharing our lessons. Every week we sit in the spotlight of a tiny room with carpet on the walls; singing a song that doesn’t require a stabilizing arm, a walking stick or the ability to be balanced. And my limitations are left outside the soundproof door.

Finding my voice as 42 year-old woman, living within the restrictions of MS for over two decades, is empowering.  I’m no longer afraid to get up in front of that audience and I have finally found, that something special that Madeline and I can share; one that doesn’t ask more of me than I can handle. And wouldn’t you know it- it was there all along. After all of these years I can now see that I am the “one” I’ve always sang about in a song that transcends time.

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MSLOL-Radio — Listen Up!

In case you haven’t heard the good word, let me be the first to tell you that MSLOL is coming to blog-radio. Join me on Monday, September 27th to hear the audio component of this blog. Very exciting times, these are.

How will that play out, you ask?    I’m not sure.

I can say I’m great at talking and laughing and speaking of my life mission (the MS SoftServe one!)  I’m happy to tell anyone just about anything about my experience with MS.

Ok, so that’s two things.

Oh, and each show I will interview a person from the MS community. (Isn’t that a nice vague requirement?) The debut show guest will be Kim Gledhill, a fascinating woman who has been living with MS for 14.5 years and has an interesting story to tell. She is part of the constantly growing community of people “living with it” on Facebook.  You know, the social network  that connects you to all of your long lost friends and those who you’ve passed on the street once. What you may not know is that Facebook  is an incredible resource for those of us living with that two letter suffix;  and prefix for the those of us who are women. (As I like to say, I’m MS-squared!)

So here is the ticket to listen:

Here you will find out important facts like that it will “air” September 27th which is a Monday, at 7pm EST and how to log on. And check this out, you can listen online or via your phone.  Ah, modern technology! And don’t lose sleep if you still can’t make that time slot. I will be posting the audio file here.  Of course if you are listening live, you can call in to ask or comment on whatever you so desire. (Let’s keep it MS related, shall we?)

Looking forward to “See-ing” you Monday.

That’s Ms. Amy Gurowitz to you!

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Feel the Burn

We’ve all been there. We try to eat well and exercise. We have the best intentions that are renewed each year in resolute declarations. There they sit, along side the list of things we hope to start or stop doing. And every part of life pulls and pushes in this balancing act, setting us up for the next new year with a new list; or the same list written with a different pen. 😉

We live in a culture where people diet themselves to starvation and exercise to injury. And don’t even get me started on the images that assault us daily or I’ll open up a can of feminist–whoop-ass on you faster than you can say Gloria Steinem!

It is tough to escape the standards set out for us, especially for women. The basis for comparison is everywhere; whether it is projected at a theater, backlit on your flat screen, or printed on the pages that scream at us while waiting on line at the grocery store. These images are slammed so far down our throats that even what would be considered healthy isn’t enough for… uh-oh… did I start opening that can? (She says putting it down and slowly backing away from the table.) What I’m saying here, is that we all struggle with society’s expectations of how we should look. It is not an easy line for most to walk and even more challenging for those of us who have trouble walking any line.

If you think trying to commit to a healthier lifestyle is hard for you, consider the hurdles a person with MS has in that court. (Hmm. hurdles, court… did I just mix a sports metaphor?) Not only do we have to battle the approach/avoidance that everyone finds at the gym door, but we are also fighting our limitations that can change weekly, if not daily. Try to imagine riding an exercise bike and being incapable of walking when you are done. And sure, if there is a place to rest you might be able to leave the gym on foot. But tell me, could you find the motivation to keep up that good habit? Of course I was offered the “get out of jail free” card (ie. MS) that excuses me from all gym obligations; But I won’t play it. I want to be as healthy as I can be, to take control of what I am able to. Exercising is one of those things. Or is it?

It happened after I had completed an aqua-aerobics class for people with MS. (That’s AACFPwMS if you’re google-ing it!) I had only been in the class for about a month and I …was …loving it! I could get some cardio going without getting too hot or, as I feared, ending up face-down on the floor. Moving in the water felt great… the running, cross country-ing, scissor-ing, situp-ing, pressing “lights” (as opposed to lifting weights) and after an hour I wasn’t destroyed. I was so excited that I could feel my muscles burn the next day. I can’t remember the last time that happened. In the water I was MS free and my ease of movement was liberating. And then in a moment, it wasn’t.

Suddenly, the wind of my enthusiasm was knocked out of me. Getting out of the pool that day was like pushing an unwilling child into the doctor’s office. Those legs just weren’t cooperating. Even after a firm talking to and a time-out, they wouldn’t behave. (Legs today, sheesh!) So I decided to kick-it up old school with bribery, threats, and finally a good smack. But they were plugging their ears and singing Mary Had a Little Lamb the entire time.

There I was, in the midst of an MS attack. The worsening symptoms that determined this episode were compromised balance and difficulty walking.  They sound small enough, when listed in black and white, but they were large enough to frighten me to stillness. So I did what those of us with MS frequently choose to do at exacerbation onset. I punished my system with 5 days of Solumedrol. It was a reprimand that could be heard blocks away.

“Immune System! You get down here this instant. If you don’t leave your little myelin alone, I am going to send you to bed without your white cells!” I mean it this time!”

And just when I thought I gained the upper hand, she showed me that I shouldn’t mess with the system that is responsible for protecting my entire body… even if she repeatedly mistakes my myelin for an invader. (Will you never learn??) So, in response to my steroid tantrum (which did alleviate some of my symptoms) She made sure the subsequent side-effects left me crying on the floor. She is in control. Not me. And with a rapidly enlarging waistline and a self-esteem grounded for over a month now, I now know who is the boss of me.

How is it that the same drug that shrinks the swelling around my neurons works the opposite on the rest of me? I kid you not, I look 8-months pregnant – I’ve been there (8 months pregnant that is,) it’s not something you forget. Even the most secure person, resistant to all social pressure is rattled when suddenly her body is an unwilling host to an alien baby.

As I continue to deal with a wide variety of symptoms that won’t respond to treatment, I am constantly searching for health within my limitations. Living with my version of MS makes exercise, at times even movement, very difficult. And my need for comfort is at times off-the- charts.  Juggling that reality while having to deal with demoralizing side effects- is truly a cruel joke. One that ends with a light ha ha ha and finds everyone looking around, pretending it was never said.

But I’ve been living with MS for almost 22 years. I am the Zen-Master of coping. I have no doubt that I will craft the right alternative… perhaps a combination of emotional manipulation with a little blind determination and a few soothing bowls of cereal to carry me through. Whatever the case may be, I will work hard to keep my ego intact with no need for added dr.’s visits to heal invisible injuries.

As I pack up my gym bag I notice my immune system just ahead of me, skirting around the corner to avoid eye contact. She knows that I’m figuring this out and when I get to where I’m going, she won’t be able to bring me down so easily. While my physical limitations will likely be here for the long haul, my emotional consonance finds refuge in the end. Because as feelings of loss for what I might have been without MS run through my neurons; I find hope that I will be ok in spite of the burn~

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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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Please Don’t Hate Me!

Dear Blog,

Please listen to me. I wouldn’t cheat on you. You are, and always will be my main squeeze. I mean c’mon, we’ve been so close since we first met in 2007. And we have had so many LOLs together. I realize that I haven’t been around much lately, or answered your emails. It’s just that I’ve been busy. I know, I know I’ve always had plenty of time for you. And okay, facebook had distracted me for a while, but I always come back to you- sharing my deepest emotions, ones that I couldn’t tell anyone else. You’ve been such a supportive part of my life and that means the world to me. No, I’m not breaking up with you. It’s just I’m hoping that we can see other people.

You see, I’ve started seeing Health Central’s MS Site on and off. While nothing compares to you, there are some things I need to say there. And yes, the giveback there is helping my non-profit MSSS come to life. You remember MS SoftServe, right? We’ve spoken about my connection there many times. I promise that I will reserve the words that are closest to my heart for you. And just to prove to you nothing inappropriate is going on, every moment I spend there I promise to give you a link so that you can see for yourself .

There is nothing to be threatened by, so I hope you are okay with it. And while I won’t be around as often, I will always to come back to you. In fact, I have this great idea in my head right now. It’s about MS and exercise… I debated where to write it and when push came to shove you won Blog. You can expect me back with that one soon. But in the mean time, check out this one I just wrote at Health Central. And thanks for being so understanding!  You’re  ’da best!

With a pixelated love found nowhere else on the Internet,

Amy

P.S. incase you didn’t know Blog, the word “wrote” is a link. Incase you missed it: http://www.healthcentral.com/multiple-sclerosis/c/93851/109609/home

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Unexpected Healing- or how M&M’s can make anything easier to swallow

A week ago I accompanied a good friend to a doctor’s appointment. I’ve known her for exactly 8 years 7 months and a week. I don’t usually keep such close record of when I connect with friends but we have a timer that evolves before our eyes, reminding us of when we met. Her son was born in the same hospital a week before Madeline and we did our new mommy class together. I was going through a very difficult post-partum-oh-my-god-how-will-I-care-for my-new-baby-when-I-have-MS thing. Challenging times at best. And when I walked in the room on the second week of class I immediately felt that she would be a good person to get to know… kinda like you know a good melon. 😉 My instincts proved true and we’ve been friends since. With our husbands, we enjoy a lot of common ground. We are all in education and thus have similar interests. Of course we also enjoy marveling at how much our kids have grown since we first met, when they were little more than cute, high maintenance blobs in a carrying basket. And over the years since, though distracted by life’s happenings, we found time to connect once or twice a year. Considering how time moves when you’re distracted by your child , it seemed frequent.

Two weeks ago we gained more common ground. Linda (she’s my other Linda, btw) called to tell me that her doctor thinks she may have MS. I was stunned. I tried to keep it together to be positive and helpful when we shared this conversation. I spend so much time thinking and talking about what newly diagnosed people need and it all fell to the ground when this good friend came to me. How can she have MS!!

Linda and her husband have always been very supportive of my efforts and challenges. They’re the kind of people that are sincerely listening when you talk to them. (Awesome eye-contact… I’m sure you know the type!) And it made them stand out as friends. So, I repeat, how can this be? I replayed the tape of our friendship, highlighting the caring moments and discussions about my MS. And like that moment in a movie when the plot comes to a screeching halt and nothing is what you thought it was and you have to watch it again from the beginning with your new knowledge (The Sixth Sense or The Usual Suspects come to mind.) I went back and looked at our friendship over these years with the new perspective; knowing we would come to this point. And ultimately, I’m back at the same point. It’s just bizarre! I’ve become close friends with many people who have MS over the years. Introduced to them because of our commonality. But this is the first time a good friend of mine has been diagnosed with MS and it seems like a freak occurrence. It got me thinking about where I was when I was in her place.

Everything was different when I was diagnosed. As a 20-year old college girl, nothing in my life was permanent. I struggled with the question marks of what my future would hold, a fear that sits on everyone’s diagnostic examining table. The big difference is that I had no stability. Nothing was permanent and in experiencing this with Linda, I found comfort in the place she is today. With her husband and kids, her career and identity, she is well established. She has a wonderful support network to help her navigate this. And while she has the strength of character to get through it on her own, she also has much more than I knew in 1988. As the anxiety wells up in me, her place in life brings me relief.

Going through this experience with her, I feel good about the comparison. I want to support her through it, in ways that weren’t available to me, to be that reassuring person I didn’t know. And there is something reparative for me in that role. It’s a great time to come home with this diagnosis. There are so many treatment options, so much hope. She will begin treating the “MS” immediately; she’ll hit the ground running. With all the anxiety and uncertainty, this is truly something to feel good about. And I hope ours is a comparison that helps her, makes her recognize all that she has.  And together we can have the “Damn, that must have sucked for you!” moment.

She invited me to come with her to her new neurologist to confirm her diagnosis. It was a very powerful experience. There were many things rushing through my brain, dodging the scars, while I tried to be present for her. We managed to bring laughter to the day in spite of the obvious emotional drag to the contrary. At one point, during the familiar exam her neurologist had noticed that her one leg was weaker than the other. She wondered whether he was pushing too hard on her leg. So he turned to me for a baseline. We laughed as I told him my deal. And his response was, “ Great, you have had MS for 21 years and you would never know.” Then he noted my stick propped up in the corner. And I wondered, am I an encouraging example for Linda or a frightening one? So we left and drove right to the local CVS and picked up some M&M chasers. This is a very important part of any diagnostic experience. And there are no side effects if you practice moderation… not that we did, just saying . 😉

Quite frankly I was excited to have an MS pal. (Though I tried to keep that to myself!) While I wouldn’t wish this on anyone, I can’t help but to appreciate having someone who is already a good friend to share this experience. It makes my two decades with this disease more valuable knowing that I can use it to help Linda. And the truth is, I can heal the parts of myself that have a 21-year old hurt from the time I went through this alone, not knowing about the healing properties of M&Ms.  😉

In this introspective time (seriously, all times are introspective for me!) I reread a comment she made on my blog back in October, in response to “this-ability.”

Amy, I am a firm believer that everything happens for a reason – even if you don’t know what it is right away. It seems, though, that you were able to figure this one out quickly. And, now you are able to enjoy the parts of your life that mean the most, (without feeling guilty about falling asleep during a bedtime book.)
I am always inspired by you. Enjoy this time
~ Linda (the other one)

Because I have lived my entire adult life with MS, I have grown in ways that I wouldn’t have otherwise. I’ve seen this familiar strength and resilience in everyone I have met who endures this challenge. Looking back at Linda’s words, I know that she has that strength already and that she will do well no matter what her future holds. So Linda, text me if you need me. I will always drive over with all your favorite M&Ms. (Did you know they have coconut now? Life is rich, isn’t it?)

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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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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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Finding Familiarity in Fatigue

For the past few months I’ve been answering questions on multiplesclerosiscentral.com. It’s a excellent place to find information and connect to others with MS who have similar concerns. Serving in this capacity has been enlightening, not only in the satisfaction of using my 21 years experience with the disease to answer questions; but also for the learning opportunity it provides. Recently I wrote to someone who is unsure of her diagnosis, but is experiencing fatigue. After addressing her specifics, I linked her to my blog essay on the subject and in doing so took the opportunity to reread it, as well as the comments.

Out of the 100 essays posted on this blog I think that the responses to this one resonate the most. So, I’m taking a moment to invite more of you to read this post, discussing what is perhaps the most challenging MS symptom to live with and explain to others. The comments on this post invigorate me to continue writing in order to explain to all who want to know what living with Multiple Sclerosis is like, as well as for those who already know what it’s like, but just need reaffirmation.  As always- your comments are most valuable to me.