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~

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.

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?)

Hear the voice behind the words~

I was recently interviewed on blogradio by Rae Edwards of SwaggahBoi RaeDio. Please take an opportunity to listen. Put it on your ipod to hear while you commute… mill about… eat … sleep… think. Wherever it fits!

Loss(t)

I’ve had MS for 21 years, 6 months, 16 days, 19 hours and an undetermined number of minutes.  Of course this was only accurate for the brief moment when I typed it and now the number has changed – as has my experience with loss.

As the words Multiple Sclerosis rolled off my diagnosing doctor’s lips, my fear lingered on what I would lose. It was all I could hear. From that moment on my future would be dictated by the loss de jour. With no menu-board telling me what I could expect to be served, I flinched not wanting to look forward. I began my 20s with undetermined, inevitable loss. And though my actual symptoms were slow to start… the loss (of security, confidence, constancy, steadiness, reliability, uniformity, evenness, permanence, solidity, stability, sure-ness) leaves me lost.

I lost my best friend 1 month, 9 days, 18 hours and an undetermined number of minutes ago, and that number is constantly changing. In all of my years of living with loss, nothing could prepare me to cope with losing her. It is a wound that will never heal. Like the scarring on my brain that doesn’t allow me to stand too long or walk too far, no neurons will compensate for the ones that have died. And while I will go on with my life, I have to relearn who I am without her. And I flinch not wanting to look forward.

My loss goes beyond physical limitations or the uncertainty I must embrace to keep going. My loss lives in the fear that I can’t be me because of all that isn’t here.

***

Life isn’t static. Everyday we all have new input, new experiences, new reactions and new understandings. For me, one day can bring multiple levels of change. Like the other day, I thought I would run an errand. We needed some miscellaneous items from the town stationary store and my daughter had some money burning a hole in her pocket that she felt sure would be much happier in the local toy store cash register. So we set off and I dismissed the question marks that always fill my head when I leave the house without Keith. Of course I can go pickup a few things with my daughter. What is more basic than a mom running an errand? Unfortunately my apprehension was validated. After finding a parking spot too far away, walking to the stationary store and the toy store around the corner, I was exhausted. I could barely stand up as Madeline raced around trying to decide what her spending money would allow her to take home. I counted down the minutes I had left on my feet and alerted her to our pending departure. In a quick moment she made her decision and purchased a bear made entirely out of recycled plastic bottles. But as we started to leave she had changed her mind and wanted to return it. I’m not sure how I would have handled it, had I had the energy to make a reasonable decision. All I knew was that if we didn’t leave the store soon, I wouldn’t make it back to the car. After explaining that I couldn’t stand anymore, an angry Madeline left, ran ahead of me and out of sight. Unacceptable behavior under any circumstances – but it left me stranded in inadequacy. I was unable to be a mom on the most basic level. Frustrated and deflated, I limped toward the car, silenced by the distance and my lack of ability.

Of course she knows that running away from me is wrong. Was she just the petulant child storming off because she didn’t get what she wanted?  Or was she running from the reality of my MS and how it impacts our everyday.

At home that night, Keith and I were discussing how we would talk with her the next day, and I was feeling lost and un-able on so many levels. It is so hard to be forced to look at the basic things I can’t do. It knocks me off of the optimistic determination that carries me on most days. And I’m flailing as I search desperately for a foot-hold.

Later, I im’d a friend venting my frustration and adding to my list of witnesses. He told me of when he was teaching his kids the importance of holding his hand. Saying he needs to hold their hand so that he doesn’t get lost. And if they separated, they would grab his hand and say “Daddy, you don’t want to get lost.” It wasn’t too far a leap to recognize that Madeline and I both need each other to be safe in the world and stable on the ground. Reminding me of the very recent memory of two dear friends who came to rely on each other in just that way.

This is the loss I feared, 21 years ago at my diagnosis. I left that toy store unable to keep my daughter safe. Watching her do what I can’t do, out of the realm of my protective arms. She, running from my MS, masked by anger and frustration about a bear, and I slowly follow, wondering who I am. And just now, as I type this on what would have been Linda’s 43rd birthday, I find her… I know what she would have said had she been here. And I know that her presence will always help me- be found.

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.

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.

“this” ability

It’s official.

With a June exacerbation my perspective changed. The dizziness intensified and I was unable to move without finding myself in a turbulent ocean. It was as if waves were pushing me in both directions, a sensation that is by no means easy to describe. That, in concert with a number of other challenging symptoms, landed me on 5 days with methylprednisolone– the classic treatment for an MS episode. One that I became all too familiar with since long before disease modifying drugs hit the market. With a synthetic burst of energy,  a convenient side effect, I celebrated my 41st birthday and 21st anniversary of my MS diagnosis in one day. And for once, a side-effect was appreciated… allowing me a state of being beyond my normal abilities. I milked it for all it was worth- went out to eat for every meal and enjoyed many moments on this significant day that fell in the middle of this unfortunate episode. And beyond the steroid boost, I thrilled as the numbers grew on my facebook-birthday-fundraiser for MS SoftServe.  Matching the frequency of my accelerated heartbeat, each one of my digital re-introduced friends wished me well. A positive reinforcement only known in modern social-networking. And as is the case after any all day party, I was left tuckered-out with a virtual house to clean.  Coming off the 5-day intravenous treatment was more challenging than any post-party metaphor could convey.  When all of my natural adrenalin rushed to the empty space that the steroids left, my system crashed. For over two weeks I slept and slept and slept. I’ve had many experiences with the steroid shock treatment and none of them ended like this.

When the neurological dust settled, I was left with considerable movement-based-dizziness in addition to the other symptoms I carry like luggage wherever I go. But this was different than the episodes that have preceded it and not only because of the symptoms that are now constant. In this case I realized something that I hadn’t known before.

The post-episode halt left a space for conversation and understanding at new levels. A system reboot- a defrag- reconnecting lost signatures.  Apparently every day that I left my house with foot dropped, vestibular disturbed, movement compromised, he feared the worst. This most optimistic man that I married feared that I wouldn’t make it through my work-day without injuring my self. And every night that he was teaching and late commuting- he heard in my voice the exhaustion that prevented me from being the mom I needed to be while he wasn’t yet home. This drive in me to persevere no matter what MS threw my way, was in fact weakening the fortitude that kept my foundation strong. My perseverance was compromising every thing and every one.  I don’t know where to start in this long list of ironies.

So through his eyes, I was able to see that working every single day for 7 hours plus the commute to NYC was not evidence of how much I could endure- how MS didn’t own me. But was instead the ingredients that compromise my ability to function at the level that all three of us deserve. I wasn’t spitting in the face of this disease, I was giving it control over the wrong parts of my life… and by taking myself out of the most visible realm of accomplishments “…and I work full time too!” I could concentrate on the most important one… being at home and awake for my family.

And so, as the papers are finalized and my role with the university completed, I’m finding new abilities in this label. My limited energy is now made available to my magical daughter and my dear husband. We all deserve more than what wasn’t left at the end of the day. And with that I’m learning that this ability– is the greatest of all.

I look forward to finding more than I expected with this “official” disability. Something that could only to be realized when I stood still long enough to see what they had been pointing at all along.

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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!