Author Archives

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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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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!

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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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Minor/Major Musings

It’s been a while since my last post. Losing my best friend Linda has put me in a different space. I’ve been writing for Health Central’s MS site and that has distracted me from the more intimate posts that rest here… taking me away from my innermost thoughts. But I had a dream and I want to share how it felt.

March 1st
I woke up this morning knowing I had a dream about Linda. Not because I remembered any details, more the feeling that I had to be reminded she is gone. Like for a second I could hop up and call her to say it had been too long since our last conversation.
And interestingly, I found a new and different kind of sadness as I fell into the day. One that can be concurrent with feeling happy and positive. It’s a glimpse of how it will be… because while I know I’m nowhere near that place… and some days will be harder than others… I have sight of what it will feel like when some days become most days.

If you are interested in my Health Central postings,  follow this link. This is the first in a column about living with MS and parenting. It’s called MS aParent.

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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.

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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.