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.

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!

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.

“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.

//

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.

•••

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!

Dependence Day

For the past 20 years, the 4th of July has been all about dependence for me. While the nation celebrates its independence in the stifling heat of July, I’m inside. Like so many who live with Multiple Sclerosis– heat is my dictator, my oppressor, my King of England. And while the summer holds many days that are challenging, the irony of summer’s opening holiday leaving me reliant is a wound that never quite heals. I know that whatever the invitation is, chances are good that it won’t be an option for me. So I sit in my air-conditioned room searching for alternatives on this day of independence, working hard to accept the parameters of my dependence on the arm or the stick that supports me through life.

For the past few years I have found the emotional fortitude to watch my daughter in the town parade. Sitting on the chairs set up by my back-door neighbor, I try not to be envious as I look at the ease of movement seen in everyone around me. Distracted by the parade, I wait patiently for Madeline and Keith to pass by as part of the group they are walking with. In spite of the fact that I’m sitting as one of many who have come to watch the parade, I feel useless. I can’t help but to imagine being there with Madeline as Keith has in recent years.

These can’t-do events were easy to avoid when Keith and I were “single” in our marriage. We made plans to fit with in the parameters of our (my) needs as a preference rather than a limitation. Two adults can make these choices and not be questioned. Sitting in a dark movie theater as opposed to the outside activities in July is not unreasonable when desired by two. But all that changed when Madeline came into our lives. What began as fear of how I would care for my infant grew into not playing in the backyard on the hottest days of the summer and not going on the treks through the local reservation to pick raspberries.

As invitations came that were beyond my abilities, I either “wallflowered” or bowed out and allowed Keith to represent. But as Madeline has grown into the precocious almost-8-year-old she is, my absence stings on new levels. Now she assumes I won’t be joining in and for me, that realization is a bitter pill. So now I search for circumstances that defy her assumption while also honoring my reality.

Who would have thought that my first effort would be on the 4th of July. The day that repeatedly blacklisted me from engagement. Maybe it was an affirmation from the powers that be that it only reached 79 degrees this year on that day or that the delivery came just in time to seal my participation. Arriving on July 3rd at 5pm fully charged and ready to escort me in Montclair’s Independence Day parade- I had no way out. I told myself, that if it came prior to the 4th, I would do it. I made a public verbal commitment, knowing I would not have the option to find excuses. I sometimes have to trap myself that way… my rational brain forcing my emotional brain out into the fray, like a kindergarten-er on her first day of school. By parading myself past the entire town while struggling to accept this variation of me, I am forced to do exactly that. I will be playing the role of someone who is at ease, in spite of the real character behind the continuous smiles and waves of a parade. It’s all or nothing… that’s how I roll – so to say :).

***

Despite my efforts to evade this inconvenient truth, I finally forced myself through the red-tape that helped me to avoid this acquisition for years. Forging ahead in spite of an intense internal resistance… I am now allowing myself to use that which I can barely utter for the scenarios that were beyond my reach, my step. Showing my daughter that I can be there representing with a cool ride and a big smile. Pretending its okay…even before it is… I know I’ll get there. And while my forced physical presence could only happen by making and losing/winning bets with myself, I will continue to find ways to accept the me who needs a device for mobility… to be a participant and not a sideliner. And Madeline will get the message, without even knowing it.

Amy and Madeline Representing!Representing!