Tag Archives: multiple sclerosis

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“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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“The Stony Limits Do Not Hold Love Out…”

Two weeks ago two friends went shopping. They had formed a bond around this happening 20-years ago when they first met. Back when they shopped for treasures on their college budgets in unexpected places. What they found was inconsequential. It only served as goalposts of their time together. This ritual provided a space where they shared conversation, laughter, ideas, each punctuated by the “shzing” of hangers sliding across racks and calls from the next aisle to “checkout” the discovery. Value City and local thrift stores were the inauspicious places they found these looked-over gems or rock bottom remainders that no one had recognized for what they were.  Those shopping trips were the comfortable dance to all the best songs they played over and over and over.

The girls are now women; mothers, wives and professionals.  They don’t have to reach too far down to find the college girls they once were together. Both have managed to keep that self close by. So when they see each other no matter how much time has passed since the last visit, they find the understanding and love easily accessible, below the skin nuanced by the years they’ve lived since. And as they shopped two weeks ago, they fell into the grooves established decades prior. Though this time it was different. This time they both provided more than memories and a comfort of a shared history. This time they needed each other for physical support as they went through the motions of their historic ritual.  While one endures the disease she’s had since they first met, the other faces a new, more challenging diagnosis that shakes the ground they have always felt secure on.

• • •

Finding a way to absorb the reality of Linda’s cancer has left me immobilized… yet flailing. I’m desperately trying to get my arms around all that she is and what she means in my life. As the weeks have passed I have found the place deep inside that only she can touch and I’ve rested there. Within that space has come an outpouring of emotion and words in an unstoppable flow. It’s the soundtrack of our 20-year friendship – a melodic hum that exists beneath everything. And while my feelings are often beyond description, I am taking this time to honor her and what we share. I know it will empower me from now on as I continue to read and reflect on this most remarkable friendship.

So here goes…

I met Linda P. a few months after my MS diagnosis. Tumultuous is not a strong enough term to describe the few years leading up to the Fall of 1988.  In short, my parent’s sudden divorce and my mom’s move to Florida led me in desperation to an abusive boyfriend. Escaping that, I moved to Maryland to attend the state university at College Park and after three semesters, I transferred to a different campus in search of a something more meaningful both academically and personally. I was getting used to making these big decisions on my own.

That summer before I started at the new campus began with my 20th birthday and the out-of-nowhere diagnosis of Multiple Sclerosis. It was a shocking blow to my fragile and forced independence. But in spite of my fear, I continued on by myself looking for a community to be a part of while finishing my film degree. Just a few weeks after I moved to the Baltimore suburbs and started at the UMBC film program, I found a group of people who felt good to be around. Just as the cream rises to the surface, so did Linda. It quickly became clear that we had something special. You know how sometimes you meet someone and they match you in ways you didn’t know possible? Well that was how it was with Linda. And as I search for descriptors to convey all that we have, I get lost in the reverie of everyday moments and how it felt back then to have her energy with me all the time.

Trying to describe a friendship in words is not unlike trying to sing a painting.  I’m not sure if it was her spirited way of appreciating every moment that drew me in or her adorable personality.  At this time, making new friends and meeting new people wasn’t easy. I was unsure and nervous about what MS would mean for me and this seemed transparent in my insecure presence.  Many people couldn’t deal with this uncertain reality of mine and were obvious in their apprehension. But Linda never shied away. She clearly accepted every part of who I was in ways I could not yet do for myself. She gave new meaning and comfort to my world.

Continue reading →

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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!
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Of Course Amy Can Ride a Bike~

When I was a child, my mom read the Astrid Lindgren book “Of Course Polly Can Ride a Bike” to my sister and me. It was a story about a little girl who was not old enough to consider a bike sans training wheels and on her birthday she “borrowed” her neighbor’s, only to crash it at the bottom of a hill.   My sister and I would often use the dramatic quote: “Blood on my birthday!”…as it seems appropriate in so many of life’s situations. 😉 When I was pregnant with Madeline, I bought her the book so that she too could reference this moment and share a wink with her Aunt Leslie and me.

Today, after weeks of trying to adjust to the reality of myself in a scooter for the longer jaunts that I am incapable of walking, I finally decided I would try to ride my bicycle. With compromised balance,  dizziness, and muscle strength that won’t allow me to walk more than 10 blocks I had avoided it for over 5 years and had good reason to believe that it would not be on my plate of options this coming season. In fact, when Keith was cleaning out the garage I didn’t even recognize my bike. It wasn’t the old friend that I missed over the years… more so the stranger I didn’t want to admit I knew. It’s amazing how the mind copes with loss.

So, today (Sunday) Madeline asked if I would ride my bike with her and Daddy.  I said apprehensively that I would try. She promised she would teach me how to do it again and so we took the Mongoose off its high hooks and reintroduced it to gravity. As Keith pumped air in the tires I asked Madeline if it was strange for her to have to teach her mom these things. (Madeline often exaggerates her cuts and bruises, feigning sprains and possible broken bones in a way that recognizes how she observes my limitations that don’t go away) And she said “No Mommy, its not strange, I’ve been with you a very long time and I’m used to it.” And while Madeline has taught me many things, I knew that this experiment would stand out. I told her not to be too disappointed if I couldn’t do it, it would be no reflection on her abilities to teach. Of course I was really preparing myself – knowing that if I couldn’t do it, it was no fault of my own. Though I knew the disappointment would be great- and I feared it.

So, the bikes were ready and Madeline described how I should hop up on the seat and start pedaling. This foot goes up and pushes, while this foot goes down. She was clearly enjoying her role. Starting and stopping would be my greatest challenge, if in fact I was able to achieve balance required to maintain the motion.

And I did. And it was magnificent.

Madeline felt proud that her coaching was so effective and I basked in my ability to move faster than I had in recent memory on my own action. With each stop and start I found new confidence and the uncertainty pushed to the ground by each successive pedal. We rode to Edgemont Park and circled the perimeter twice, and though I was ready for a third we opted to use the energy for the ride home.

It was a curious feeling to cover so much ground and only be reminded of my limitations when I stopped. Getting off the seat my dizziness returned. It was almost alarming because for those moments as I propelled through the park with my husband and daughter, MS was incognito. I was in a public space acting out a part seamlessly…with no one knowing the truth but us three. What bliss.

I’m looking forward to taking this experience to Kessler when I’m assessed for a scooter. My limitations can’t be understood in a first glance. I can’t be pigeon-holed as a person who can’t walk and needs a motor to go the distance. Although at times it may be true,  I’m also the intrepid woman on her bicycle who blends in beautifully with her surroundings while enjoying the light breeze blowing past her face early on Sunday morning.

Thanks for reading~

ag

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Find Me In Fatigue

Fatigue is hands down the most difficult MS symptom to experience and explain. While all invisible symptoms defy description, finding words to convey the feeling of this type of exhaustion is not easy. Because everyone thinks they understand “being tired,” it is particularly helpful to draw a line of distinction between that and this experience. So I will try to do that… words are my greatest ally, after all.

When I was first diagnosed in 1988, long before any disease modifying drugs were available to treat MS, I knew full-on fatigue. This neurological experience isn’t anything like being tired. It consumes you in its grip. It’s long fingers wrap around you and suffocate your being- robbing you of your sense-of-self. Each and every cell struggles to endure and with that, is a disconnect from all that defines you. It lives in you no matter what you do. It doesn’t even require physical movement to take hold. Just sitting and reading a book or playing scrabble- any level of concentration would be fuel for exhaustion. My memory of my time with fatigue is not one I care to revisit. It was a time with no hope, filled with fear of what role this thief of my personality would play. Trapped in side my worn-out body, I could not imagine what would become of the effervescent me.

And to make matters more challenging, I was surrounded by people who tried to tell me that they “get tired too” making me more isolated and angry than ever. Living with MS is a tough ride, but having to constantly explain yourself, defend yourself even, makes it even harder. Copaxone has allowed me to live life mostly free of fatigue, so I was caught completely off guard last Sunday when it reared its ugly head.

That day I pushed myself hard. Not by working out, or riding the Lifecycle at the gym of which I wish I was a member….. just by going to the local art fair searching for that elusive hand-crafted mug. Walking around Art in the Park (ing lot) at the Montclair Art Museum was enough to do me in.

But let’s talk mug… a welcomed distraction! This mug of mine needs to be special. It’s the one that feels perfect as I wrap my fingers around it and support it with my palm, warmed by the contents. The one that deserves to bring that ideal cup of java to my anxious lips. Yes.. I wax poetic here. I love coffee… and I need my perfect mug to have and to hold. My last victim found its fate as a hippity-hop was flung across the yard and tore it from my hands, tragically taking that rubber vehicle’s life with its own. The shards of mug sliced through it in a feat of physics I would love to replay in slow motion. A sad day for both me and Madeline. 😦

So, I excitedly arrived at the fair, the very one that brought that perfect predecessor to my home. With walking stick in hand; daughter, sister, nephews and parents near by, I descended. I had it all planned out. I would do a quick jaunt to assess where my new coffee vessel would be adopted and rejoin the family. Of course in spite of separating myself from the group, I couldn’t quite achieve the speed and agility I hoped for, and couldn’t put my finger on the ideal mug. I ran in to the posse just in time for shirt-painting, tie-dying, music-listening, food-wanting, gift-buying, bathroom-going, arm-tugging, constant-whining and thus my chances of finding my soul-mate-mug were diminishing by the second. But my family was on board. They knew how important this was. They each were given a description of said item and an assignment of what to do if they found it. Cell phones are very important in this type of mission. Phone messages with pics of mugs from across the park were employed to avoid excess travel! Anything to shorten my trip was appreciated.

Finally I found one and though it wasn’t perfect, it was close enough. I bought it and took one more trip with Madeline to get her friend’s birthday present, and then a second stop at the bathroom, and finally to meet the rest at the gang at Applegate Farm stand for that much desired-dairy-destiny. (can’t resist hyphenated alliteration!)

Unfortunately my effort to get there was thwarted by the entire physical breakdown of my overly-taxed body. To the outside observer I must have appeared to be a cast member of the Night of the Living Dead; dragging my leg, lunging myself forward to find a momentum. I suppose holding a walking stick and Madeline’s hand helped to dispel that image. But from the inside it was all black eyes and decaying body. I dragged myself to the chair that all ushered me to, and sat.

And when I got home, I sat. Unable to think or even be… stifled under the greatest of exhaustion that compromises my entire self. Sleep and depression weren’t far behind…. a delirious slumber filled with the fear of what I will be when I wake up.

Luckily with Copaxone fatigue is only reached when I push myself far beyond what is reasonable- it is no longer the MS symptom that underscores everything, found after walking 20 feet. Instead it is only found when I expect to be able to do more than my body will allow. Usually that is a lot more than 20 feet, but it falls short of a trip around a festival, a museum or around the park. (and you can forget the Bronx Zoo!) You’d think I’d know that line of demarcation by now… maybe it’s my optimism, maybe denial. Whatever the case may be, I often find myself in this zombie like state disappointed I can’t do something that seems like a “no-brainer”. And thus, I am left with the realization that there is a solution for these scenarios- and it’s that next step that I’ve been avoiding for some time. Can a scooter be as empowering as my walking stick is? I hesitate to type it, but I believe I know the answer.

When I awoke I realized a change of scene would do me good. So I called my neighbor to join her for a coffee. Her kitchen is adorned with mugs that feel great in hand and reinforce this journey with a line drawing and simple message – because in spite of it all Life is Good! That and the great conversation she always supplies is just what the dr. ordered, Thanks Susan! 🙂

Thanks for reading.

ag

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A pregnant pause…

Deciding to have a baby when you are living with MS can be a tough decision. Or not. If you’re like me, you know you want a baby under any circumstance. Whatever the case may be, I hope that by sharing my story, I can provide what I longed for when my husband and I were making our plans; that being a positive experience to support the decision we had already made. While everyone has a completely unique and unpredictable  MS path and all-of-the-above is true for how any pregnancy might play-out, each telling offers an inside-line of possibilities.  Here’s mine.

Everything about planning to have a first baby is filled with question marks even without MS. How long will it take to conceive? (How to take the reckless bliss out of marital recreation) What will being pregnant be like? (Puking, constantly pee-ing, and walking like Frankenstein’s monster….)  Will it be a smooth delivery? (How the HECK are they gonna get that baby out of me!)  and How will it change our lives? (Will we ever have reckless bliss again?) When MS is part of the equation, the question marks are bigger, bolder and have potentially long term implications. What about all of the meds that make my life livable everyday? If I don’t have bladder control now….? Will my MS be worse after I have the baby?  Will I be able to care for a new born? a toddler?  a teenager…? Okay, wait a minute, no one should be thinking about a teenager when considering to have a baby…. although it may have a significant impact on rising populations! ☺

The year was 2000, and there were a few things I had decided already about how my pregnancy would go – I would stop my Copaxone while trying to conceive- although the prospect scared the *!#@ out of me. At that point I had been on it for 7 years and it was doing remarkable things to improve my everyday with MS. There wasn’t much that was known about the effects of the drug on pregnancy and I wasn’t taking any risks. Adding to my comfort in this decision was that once I got pregnant I would likely feel much better than I do normally. It is known that the immune system is naturally suppressed during pregnancy to allow for a foreign entity (ie. the baby) to coexist inside you.  And so, the said immune system no longer randomly attacks the precious myelin that keeps our neurons functioning healthy! (note to self: if true, explore surrogate motherhood as vocation!)

I was afraid of what my MS would look like without Copaxone or the benefits of a pregnancy-based suppressed immune system. So it was the “in-between time” that had me worried. With the over-speculation and hyper-assessing I take to anything; I read, and wrote and thought. And talked. And talked. And talked.  For me, rehashing and reconsidering any and all possibilities gave me a sense of control over any situation. Silly mortal!

So I stopped the Copaxone, (My neuro told me it would take no more than a week for it to be totally out of my system) and immediately starting working the ovulation predictors. (Say goodbye to spontaneity)  I wasn’t going to waste a moment. I knew that the quicker I got pregnant the better.  It’s a crazy game trying to enjoy the process (if you will) with so much riding on it! (if you will!) Luckily it only took us three months to conceive and my health didn’t falter.  Check.

What came afterward was all good. I had a wonderful time being pregnant. Okay, maybe that’s slightly sugar-coated. But the truth is as they predicted my immune system took a break. And all my cells came together in their pregnant bliss and rejoiced! My energy was up and I could walk farther than ever. Of course I dealt with the normal joys of pregnancy: nausea, headaches, heartburn and the inevitable transition in to the incredibly enlarging woman. But all paled in comparison to the normal MS symptoms that I had become so accustomed to.  What really tickled me at the time was that I was treated in such a way that would be very helpful in my every day life with MS. I was offered a seat wherever I went and always made aware of the closest bathroom. We went to see Chicago on Broadway and I was escorted to a super-secret bathroom in the mezzanine. Wow! I immediately began to consider ways I could develop a prosthetic pregnancy suit for just those scenarios in the future. Think of the possibilities!

When the big day came I delivered Madeline after 6 hours of labor, 2 of which were “hard” then ultimately cushioned with the once-removed feeling of an epidural. (Someone is having a baby here… though I’m not clear on who! ☺)

Then we got home and wasn’t so easy. Recovering from delivery and having to learn how to do EVERYTHING is challenging for everyone. The breast-feeding, the diapering, the clothing, the bathing, the burping, the sleeping or rather the not sleeping, all created a veritable tornado of learning and uncertainty. Luckily it was cemented together with the unbelievable love you can only know in your baby.  Keith and I spent all day and night in that first week marveling at our perfect little person. Nothing could have prepared us for that emotional magnitude. This couldn’t possibly be what everyone else is doing!

And while I was coping with post-partum depression and fear I would not be able to physically do everything a new baby required, we found the support we needed and tried to be patient that the rest would come.

16 days later was 9/11.
Whatever feeling of parental mastery we had gained shriveled in our fear of the world we brought sweet Madeline into.

• • •

When all is said and done my greatest hurdle was emotional. I never had the MS relapse that was often sited in the “literature”. And though I had challenges that were uniquely MS, none were above and beyond my ability to cope at that time. The depression that began after Madeline was born, merged with the anxiety that we all felt after that September day.  And though my pharmaceutical cocktail continues to include ingredients that address these issues, I can’t help to wonder what that graph would have looked like had those two events been further on the timeline.

When I began this entry, I thought it would be an opportunity to share my experience with pregnancy and childbirth from an MS perspective. What I hadn’t realized was that irrevocably intertwined in my (and Keith’s) most precious life experience is the residual impact of that tragic day.  It’s impossible to think of one without the other and so much sadness and resentment surrounds that pairing.

If anyone reading has questions about having a baby with MS — please feel free to contact me and ask the details that didn’t make it into this final version. Right now, I’m carried away in the other place this writing took me, trying to weed out the memories I want to magnify and lose those I long to forget.

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I can’t play hopscotch

This week I’ve connected to a dear friend, I haven’t known in two and a half decades. And with this re-connection I find myself addicted to a Penseive-like journey that has revealed immeasurable emotions in addition to an opportunity to become reacquainted with my healthy young self. With remember-whens and photos of me that I’ve never seen, I find myself immersed, unable to look away. This need has taken on addictive qualities that are making it difficult for me to get back to 2009.

In the midst of this journey, I went outside to play with Madeline. With  joy easily found in this early spring day, we combed through the list of things she’d likes to do- those special things that she hasn’t done during the cold winter months. And while her usual outdoor playmate worked diligently inside, we searched for what I can do instead. (tag- no, obstacle course- no, jump-rope competition-no, hula hoop-no.) And though I was able to talk her into drawing on the drive-way with last year’s nubby chalk, it clearly wasn’t on the top of her list.

We held our noses because a skunk sprayed our car last night, and I tried to engage her with a drawing of the culprit, though it came out looking like a turtle. (nubby is an understatement-and you may not have noticed but a skunk has some pretty fine features)

“I know mommy, let’s draw hopscotch and we can play that together!” “Ok” I said, just assuming I could. It’s like a language one never forgets, right? And while she was bending and turning in ways that would evoke dizziness in me, I stood by and serenaded her.

“What a day this has been, What a rare mood I’m in…why its almost like being in love”

“Mommy, I don’t like love songs, sing something else.”

“Okay,” I said, “how’s this… I’m here, to remind you of the mess you left when you went away.. (an inside joke that only I could appreciate)

“No.” she said blankly in her cute sarcastic way (she is definitely my daughter!)

So I launched into the songs I sang to her as a baby, most notably Madeline Beatrice Adams-Gurowitz sung to the tune of John Jacob Jingle Heimer Schmidt. And we laughed as she finished the hop-scotch board.

With the joy that is reserved for single children, she went first, and second, and third. ☺ Then it was my turn. I grabbed the stone with optimistic confidence and started on a task that was at one time as natural as breathing. And though it was clear with my first hop,  I pushed on. As I jumped, I edited the film in my mind, cutting between my yearly neurological exam and each hop. A visualization that is so strong, I will remember it as if the scene played out in exactly that way.

When I was done, I sat with the realization that this simple little game is exactly what I can’t do. So I watched her for the rest of the time… counting and clapping. And while I’m sure she enjoyed the attention just the same, I withdrew to that faraway place that has consumed my last 9 days and that picture…. lying on my side, with head in hand and the classic smile that lives with me today. It’s no wonder that I’m stuck in those early years with my dearest friend from a healthier time; a me that feels simultaneously so far away and so close. I don’t want to come back. Yet I know that if I don’t find a way to absorb this feeling and make it my own, in my current day… I won’t be able to laugh with Madeline on the driveway singing songs that are mine (Alanis) and her’s (…her name is mine name too).
ag

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There’s Got to Be a Better Way

A few years ago Madeline, Keith and I enjoyed watching Little Bill together. It is a gem of a show created by Bill Cosby that is very entertaining, creative and educational. All the things you would expect when touched with Cosby’s genius. Keith and I revel in those shows from an Instructional Design perspective and we love to be involved in that process with Madeline, using it as a tool to teach her how it applies to her life. She is always an eager student. In one episode Little Bill was trying to figure out how to accomplish a goal (the details escape me) and he kept repeating “there’s got to be a better way” as his mind moved through the creative process of trying to determine how to make it work. That stuck with me and I use it for Madeline, as well as for myself.

Living with MS requires me to be creative. I need to incorporate new symptoms in to my life regularly, while maintaing the pile that already exist. Sometimes that maintenance is streamlined, but often there is a log jam when something is more difficult. It requires a pause and reboot.

So here I am, announcing a pause and reboot.

I’m trying to get back to my yoga routine that ended in December of 2007 when dizziness came to challenge me.  I’ve tried to reincorporate it in different ways in this past year and a half always gravitating to abdominal tightening, I found myself drawn to the very thing that makes me most dizzy in my effort to remain trim. (Why am I soft in the middle when the rest of my life is so hard?) 🙂  Reboot.

This is not about physique. I’ve always struggled with the fact that I can’t work out the way I want to; to be as trim as I prefer. Society’s pressure doesn’t passover me just because I have MS marked on my doorpost. (little pesach humor there!)  But that isn’t what Yoga is for. It runs much deeper than that.  

So last Tuesday I went to my first Yoga class. The MS Society was sponsoring this MS Yoga class for free at a church down the block from me. I couldn’t find any excuses for not attending… it was convenient on every level. So, I went. Somewhat fearful of what I was going to be exposed to, in terms of the MS variability, but forging ahead knowing that this was really an old emotion, and 20 years into this I can handle it.  My ego was no longer that fragile, and I need to update my files. 

And I moved through the expertly guided positions (many of which were familiar to me from my home video) slowly and deliberately. The woman who was leading this session Diane Speer, clearly had experience working with people living with MS. Her expertise was immediately evident.  She started us all in an easy place… and we each worked our way though it.  But in spite of my careful effort, I knew when I stood up that I hadn’t been successful.

And here I sit, 4 days later- dizzy when I move my head, clutching my stick, staying home from work and using my energy in stillness. Luckily the stillness works for me and I feel ok when I’m at the computer.   So, while some would give up on this yoga thing, I won’t, because I know there has got to be a better way. And Diane is going to help me crack this. (thank you Diane!)  We’re going to craft a routine that provides the right movement, both inside and out– neurologically, muscularly and emotionally. Until then, I’ll just sit still.

and I’ll keep you posted.

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MS Aware… ness

This past week  was MS Awareness week. It’s this week that all of the organizations dedicated to eliminating the disease and supporting the people who are living with it turn up the volume so the rest of the world can hear.   It’s got me thinking about the word- Aware.

I recently received an email from someone who was introducing themselves as so many do – with her diagnostic tale. She described her version of MS in reference to how it has progressed to a point that she is aware of it everyday. I immediately paused to consider.  It’s an interesting way to establish one’s level of disease impact.  So I try it on.

I was diagnosed at 20 years old with my identity still in its pupa stage. As a result MS is an integral part of me. The inseparable fiber of who I am. No matter what my symptoms are on a given day, if I’m breathing I am aware that I have MS. Of course my symptoms make it next to impossible to forget, but it’s much more than that.

It may be because part of my forming sense of self as a young woman was with the  knowledge that my future would require an ability to cope.  And because there was no way to determine what I’d be coping with, in both the immediate and distant future, I needed to learn to live with the not knowing. I think that was the most difficult aspect to wrap my head around.

In the beginning it showed itself mainly as fear. And not in the productive way that forces you to strategize and plan; but in an insidious way that derails everything. The kind of fear that takes every moment your mind is at rest and fills it with all the worse possibilities in scary detail, often with a dramatic score. (I was in film school after all- theatrics at the ready!)

But as the years went by this fear turned into something else. It had cadence and rhythm. What was imperceptible while in the midst of it,  is crystal clear in retrospect. And while I’ve struggled to come up with words that effectively describe it,  I  immediately recognize it in others who have been living with these two letters for a long period of time.

It’s a verve that underscores our coping. A long history that informs and ultimately empowers our uncertain future. Maybe I would have been that person no matter what my life map looked like.  Either way, I enjoy the resilience that I’ve earned. And relish in its constant application to what MS and life in general throws my way.

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And the other foot-drops…

On the way to see my beloved neurologist last week I was thinking about my decision in December 2007 to use a walking stick- not an easy one to say the least.

For quite some time I had been tripping over nothing- though I never thought too much about it. I was branded a klutz at a very young age and always chocked it up the tendency to a flawed gene I had inherited.  So when concerned family members asked me if I had considered using a cane- I defensively claimed that if I needed a stick, my doctor would certainly have recommended it. And thus the phantom obstacles continued to block my path, with many a bloody knee and an embarrassed moment on NYC subway system.  I glossed over the absurdity of this all-to-frequent occurrence with a bit of performance art.  Brief moments of flight followed by random explanations announced to everyone and no one. Look that sidewalk is uneven! It’s these shoes! These practical rubber soled shoes tripped me.

And so it went unchecked until December of 2007 when the dizziness  arrived, an unwelcome guest who would never get the hint. What I hoped would be temporary became a new way of life. It was my husband’s inquiry that made me realize I would need to reconsider what I’ve assigned as my neurologist’s responsibility. Keith’s question has more power than my original family and it forced me to realize that my life requires another “foot” on the ground- a tripod if you will to help me navigate the concrete jungle as well as the bumpy green suburbs.

This need was reinforced when I visited with the vestibular neurologist who when testing my stability marveled that I would consider walking without a stick.  Placing his own stick near his desk reminding me of Joe Gideon’s exam as the doctor and patient both had cigarettes hanging off their lips hacking away during his physical— only less ironic. (see All That Jazz)

So, where was I? Oh yes- my doctor’s visit. After the routine performance of move this, touch this, walk like this, tell me this- my Dr. said,

“What are you using a cane for?”

“To compensate for my foot drop” I say.

“Well foot-drop doesn’t show in your reflex test or in your walking test.” he said

“But it does show when I’m kissing the sidewalk!” I hadn’t thought quickly enough to say.

So I’m leaving his office wondering why my Dr. would question my decision – one that was very difficult to make- and serves an important purpose in my life. Could he have said “Tell me, why have you decided to use a walking stick?”

I know, I know. Dr.s treat diseases and  symptoms while nurses treat  people. How is it that they can’t be housed in one person? Is there is no time to teach it in those advanced degrees?  And to think that I thought that my Dr. would have recommended it, if he felt I needed it. In addition to having this disease, and living with the constant symptoms and their physical/emotional effect- I have to be my own advocate. Any large company would view that role as a conflict of interests.

Hmmmh. I miss Linda Morgante more than ever.