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.

MSLOL Radio- Humor Me! Finding the funny while living with MS

On Wednesday October 19th at 8pm (EST) we will disclose a mostly unknown, un-adverstised treatment for MS that has no side effects, no co-pays and can be taken every day, all day with no possibility of addiction. Hmm…that may not be true. Let’s just say that any addictive state can be legally and safely fulfilled.

It’s all about finding and using humor to cope… But you knew that didn’t you. I mean… you read the title!  Join us at 8pm on Wednesday to hear the accounts of 5 armchair comedians who have MS and can’t cope without it, and two professional stand-up comedians living with MS who make us laugh about it even when they/we can’t stand up. We’ll hear from Jonathan Katz (of Dr. Katz, Professional Therapist fame) and British comedian Jim Sweeney (of The Comedy Store and Whose line is it Anyway, fame.)  Check out the Jonathan Katz interview with Trevis Gleason on EverydayHealth.com and Jim’s one man show My MS and Me. Both will help you find a spin on the most challenging of MS experiences that will likely have you nodding and laughing throughout.

Jim Sweeney, Improvisationalist Comedian with MS

MY MS and ME with Jim Sweeney

Dr Katz, Professional Therapist whose not a therapist, but does have MS

Dr. Katz: Professional Therapist

So, here it is once again (For me and MS cog fog peeps- repetition can be helpful me thinks. Granted cutting and pasting in iCal email alerts is even more helpful!)

Humor Me: Wednesday October 19th at 8pm (EST)
Use our new toll free number: (877) 774-3194
or listen on line at Blog Talk Radio …Oh, and while you’re there… hit that “follow” button, it’s the blue one with the word “follow” on it. This way you will be in the know and impress those of us who can’t remember anything!

Are you looking for that show you loved, the one from earlier this year?  Click here, and feel free to lather, rinse repeat!

Stress Begets Stress Begets Stress when living with MS

Isn’t it annoying that stress has a negative impact on our health? I mean if we’re already dealing with emotional and mental strain, we clearly need endorphins not ulcers! Why isn’t there an immuno-modifier that can address this issue? And since we’re talking about lacking immune systems, let’s talk about stress and MS, because that combination is truly unjust. When you have stress and MS, it begets more stress and more MS, leading to even more stress and more MS! I pause to throw a dirty look at who or what ever is behind that serious misjudgment in human design…

(Want more? Click!)

Surfacing~

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?)

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.

I Can’t Wait ’till My Colonoscopy!

A month ago I started experiencing a problem that had nothing to do with MS and I can’t even tell you how exciting that is. I generally steer clear of scatological talk (cause lets face it, it’s disgusting!) but for the sake of this discussion I must explain that my “problem” brings to mind a Niagara Falls metaphor.

Having symptoms that change as fast as Facebook status updates, I’m very aware of what I feel when and for how long. After five days with this unfortunate experience, I went to my GP. She sent me for blood tests and x-rays and then to a gastroenterologist who sent me for a cat scan, and now I have a colonoscopy on the calendar. Apparently I have “mild, non-specific swelling in the lymph nodes of my abdomen and groin” (isn’t groin an unpleasant word…kinda like spleen or bile). So I’m curious what is wrong and hope that it has something to do with my abdomen sporting the pregnant-chic look; but the investigation and not knowing doesn’t faze me. Being poked, prodded, tested and schlepping all over town for the right specialist to bring test results for reassessment isn’t foreign to me. And I have no doubt I will be fine. But the surprising part of this experience isn’t the blasé optimism I’ve so easily found. No. The part of this that has me sitting with my jaw slack-and-agape is that this is the first time in my adult life that I’ve had a health concern that isn’t MS related.

As a woman who has been living with this “nobody knows why” disease, I have learned to accept what is, and not throw my hands up in the air with every new symptom. But look at me now! I have films and digital renderings that correlate with my symptoms. Did you follow that? I have symptoms that actually reflect what is going on in my body. Look! It’s here, here and here on my catscan! This is a totally new experience for me. MS is an amorphous disease. It’s often hard to describe a symptom and it can’t be pinpointed on a scan. While MRIs are an amazing diagnostic tool, they don’t provide a map to the symptoms that impede my ability to function everyday. No one looks at my annual MRI and says “Hey, this scar here is why you can’t walk far; this one is why you are incontinent and have regular bouts of pain and this is the pesky little guy that makes you dizzy all the time.”

So, here I am, reclining on my flexible office chair with my hands behind my head, smiling. Of course I can deal with this. It is actually fun. But in the midst of this bliss I find myself glancing around to make sure no one is looking at me; sitting with the sad, pointless speculation of what my life could have been had this been my first major health issue. Of course I shake it off and look to the more positive aspects of being me, while trying not to lament my summer reality that I can’t really leave the house unless it becomes unseasonably cool, that I’ve been taking so many medications for the last two decades that I have to carry around those little plastic reminder cases and that I struggle with the fear of the unpredictability of doing errands alone.

I take a moment to mourn this loss and then I go back to the bliss of a health problem that will very likely be resolved. And while I’m there I breakout the list of things that make my life full and fabulous. Cause lucky me! I got a bunch of those. And at this moment, the best part is that I will count down the days until my colonoscopy when I will likely learn exactly what is wrong with me and how to fix it.

I am so excited.

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~

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?)

a song filled in~

On the phone I sang to her in what would be her last hours; the song we used to harmonize in college. Her voice was a faint whisper, but I could feel her presence. At some point I forgot the words and launched into a series of melodic “something-somethings” while laughing and crying. She tried to speak. Her voice was too soft for me to hear… so I told her to just listen.  I didn’t want her to struggle.

When I got on the plane the next morning, I got word. I disembarked and sat out side in the cold air, waiting to be picked-up to return home. I could have waited the 40 minutes inside, but feeling the discomfort and clarity of the cold kept me out there at departures. Or maybe it was just feeling something that kept me. Sitting tenuously on my suitcase, the numbness filled my visible breath. And I replayed the song hearing her harmony next to my melody. Filling in what was missing.

John told me later in the day that she was smiling ear to ear through our brief conversation and though he didn’t know what I was singing to her, he could tell that she was filling in my forgotten words.

I’m not sure I will ever recognize myself in this world; this place where Linda doesn’t breathe the air. I’ve never lost like this. Maybe someday I will find a way to use these memories to fill in the hole in my heart. Maybe not. Either way, I will seek comfort in the devoted song- that will always find harmony in my mind.

advocating from within

advocate [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.