This just in!

Health Central has produced some terrific Multiple Sclerosis videos over the years that are a must see.

And here is my contribution:

While you are there, check out the other offerings of the site. The conversations going on in the MS community are not only informative but are often soothing. It’s good to know that you are not the only one dealing with it.

Enjoy and spread the link. * Full discloser:

*This was a challenging shoot (4+ hours). I think I slept for 3 hours after all was said and done. Kudos to the camera man and the editors who made it seem like a smooth conversation!

Surfacing~

I’ve been trying to come up with the words to describe this for months; though come to think of it, it’s probably more like a year. This inexplicable thing has been bouncing around my head, periodically coming together to make a sentence and then falling back into individual words that I can’t remember or feelings I can’t explain. It seems fitting to have this figured out before the year’s end. (Which happens to be moments away.)

So here goes:

For me, living with MS is a fluid experience. My changing abilities wash over me like the tide and leave me disoriented. My body defines and redefines itself with the ebb and flow of my disease and my emotional response is a balance of denial and strength. The current pulls me around as I’m dodging fears and rising to the challenges to keep moving forward. I search for solid ground to find perspective. But until I get there, I forget what normal is.

Each day rolls into the next with changes that are often very subtle. And after more than two decades with MS, I have learned to accept what is for the day, the week, the month. I don’t spend a lot of time examining the specifics of how I feel. I just cope. And part of that coping is to avoid looking at the big picture. While “I’m soaking in it,” I can’t see what may be obvious to others.

See how confusing this is? I feel like I’m contradicting myself! Ok, let’s back up a bit.

My symptoms fall into two categories. There are those that I’ve dealt with on a daily basis, since I was diagnosed. Many of them are manageable with my prescriptive cocktail, others I have learned to live with.  For the sake of the metaphor, let’s call those symptoms Barnacles. The second category consists of the symptoms that come and go and come and go. Let’s call those Shells. Oh wait, did I say two? There are actually three categories. The third is the attacks. (Okay, I could go all shark metaphor here, but won’t over-do it!) The sudden onset smacks me with an unexpected wave and leaves no question about what is or isn’t usual. And while I am afraid that some of these new symptoms may go barnacle, I rarely lose sight of who I am outside of the relapse.

So, here are some examples of the parasitic barnacles I live with. Including, but not limited to: foot drop, difficulty walking, dizziness, poor balance and hmmm, what are those other ones… oh yeah, incontinence and an inability to pee. How could I forget them!?! These tenacious little buggers have been clinging to me for so long that I can’t remember a time when they weren’t a part of my everyday.

So you ask, how does this fit in to the inexplicable-thing category? It’s those elusive shells. They roll in and roll out and as I chase them up and down the beach, the water overtakes me and my defensive denial kicks in. Leaving me even more dizzy than usual. When I finally resurface, I can’t tell where I am.

I’m getting lost in metaphor. Maybe a real example will better convey what I’m trying desperately to say.

This year I noticed that I couldn’t stand for very long. The amount of time required to load the dishwasher or heat up a microwave feast eluded me. And because it came on so gradually, I barely noticed it happening. As the months went by, my standing time continued to decrease and all of a sudden I stopped and scratched my head. Have I always been this way?

From the outside this must seem ridiculous. How could I not know that this debilitating symptom is out of the ordinary? As I speculate further, I find myself standing in moving water. The next thing I know I’m submerged in a tide that was at my ankles a few moments earlier. And as the water touches my chin, I tread, trying to figure out who and where I am.

It’s usually my husband who reels me in. He helps me find perspective without lingering on the thoughts that are counter-productive in my coping. Realizing that this symptom isn’t a barnacle, set off internal fireworks over the Hudson.*

So the year is at its end. The next one is imminent and as is the case for all of us, I have no way of predicting how the tides will turn. Maybe now that I have the words all together in one place, I will be less likely to go adrift again. Though I must say, denial, when used reasonably, can be a very comfortable flotation device.

*Oh, and btw, “my long-standing-ability” has greatly improved or “How I learned to stop worrying and love the Ampyra.” Does anyone get that reference?)

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.

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

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.

Blog Blog Blog.. is that all you ever write about?

An obscure altered quote from the Bill Forsyth Scottish hit movie of 1981 Gregory’s Girl. That was back in 7th grade for me. I even remember when and where I saw it. (The Forum Theater in Metuchen, NJ)  An obscure reference to say the least. It’s not even among IMDBs listing of quotes from that movie. Yet, it continues to hog space amongst the old phone numbers and birthdays of people I will never speak to again. And of course.. those scars. Those MS lesions that have been accumulating for 20 years.  

I take about 30 minutes every morning to peruse MS blogs, and write in my own. (actually this is a new addition to my daily routine, I like to make public statements like that so I can commit myself to things!). I read over and over how people are living with this disease yet it doesn’t define them.  It makes me wonder.

I’ve mentioned that since I was diagnosed at 20 years old, MS underscores my every fiber. I speak of how it molded me and shaped me to be resilient and powerful.  It forced me to recognize that I can accomplish far more than I thought, neatly categorizing my life in to sections. Sections entitled “fear of uncertainty”, “pain of speculation”, “coping alone”, “coping while dating”, “coping through marriage, childbirth, Life stressors, advanced degree, business efforts”. Every stage and experience of my life has been punctuated by my MS and the unique symptoms it doles out regularly.  So, I hesitate when I read other people’s experience that “ms doesn’t define” them.  I’ve never been a grown woman without MS and I’m not sure who that person would be. 

Or maybe I can find that person with some effort, and I don’t want to. I teeter nervously on speculation. I can look at who I am along with MS. But when I even begin to look at myself without it.. for the sake of discussion… I only come up with points I’d rather not even consider.  It only serves to illustrate a loss. What I can’t do. What’s the point.

So MS does define me. It offers me constant daily challenges for which I work hard to rise to the occasion. To add strategy to my belt of coping and you know what? That empowers me for the next step.  So I won’t question my definition. I’ll relish in the me that has happened with MS. 

I’ll try that on for a while. In the mean time feel free to share your definitions of self.

~ag

Happy Birthday (Anniversary) To Me

So here it is. Saturday, June 21st of 2008 I’m celebrating my 40th birthday and the 20th anniversary of my diagnosis. Being diagnosed with Multiple Sclerosis on your 20th birthday might seem like a cruel joke to some, but for me it was the beginning of my life challenge. What seemed to be an insurmountable prognosis became a series of tests that I passed with flying colors.

Don’t get me wrong… It would be an understatement to note that a lot of this ride has been very difficult. I’ve certainly spent time crying, shaking and cursing the universe that assigned me this lot in life. Wondering in fear what is next and how will it change my everyday. The what ifs” and “will I be able to handle it ” question marks clogged my already crowded neurons. That ride started out like a rollercoaster with no end in sight. The loch ness monster at bush gardens in virginia is the best parallel. I was too scared to go on it as a 10 year old but I’ve been riding it every since my 20th birthday. This time I was taller than the hand on that little animal painting and had no excuses for not joining the group of apprehensive riders.

Apparently the same universe that I cursed, thought I could handle it… even 20 years ago at this very low period in my life. Apparently it (the universe) was correct. “That which does not kill you makes you stronger” is an apt theme for what turned out to be a scary course with MS. The people I meet who have had this diagnosis for more than a couple of years mirror that posture. It’s the once unwilling boxer now shouting “Is that all you’ve got?” “Bring it on!” I’ll show you what I can handle. It may have taken me years to find this fighter in me… but its with me now. When I think I won’t be able to cope with the symptom de jour… I look back at what I rose to the challenge of, and feel emboldened. (I think I may have left out 1 metaphor…should I go on?! :) )

In 1988 I was just starting out on my life, independently from my family. New to Baltimore I sought out friendships, dated and learned who I am as a filmmaker in a pre-digital, pre-internet world. I also needed to learn who I was (am, will be) as a person with Multiple Sclerosis. Yet I didn’t yet know who I was without MS. The spectrum of “what might be” seemed vast at 20 years old. I feared everything. Would I be able to complete my degree? Would I ever meet anyone who could love me with this disease? At a time when I was unsure of who I am in this world, I had to cope with unsureness of my being at the most pure level.

Discovering myself as a person with an organic disease that is completely unique is very tricky. When I reflect back on that time I wonder how I got through it. Because I was simultaneously coping with my parent’s divorce and my mom moving to Florida, I was alone in the process. But like many things in life, time is the great adjuster.

Time heals all wounds… except of course if they are scars. In retrospect the wounds of coping made me a stronger individual. I feel that who I am today has been shaped by my ability to cope with unexpected changes. As I leaf through the pages of the history that is mine with MS, I continually make that positive Hmm sound. You know the one.. with the little lift on the the last “m”. Almost questioning. As the years progress and I continued to reflect I realized that I can deal with far more than I ever imagined I could. The initial fears that came up while reading the list of possibilities in 1988 played themselves out very differently.

But the THE UNKNOWN loomed large over my college graduation. As I sit here 20 years later, a mother, a wife and a person who owns this version of MS – the next 20 years still hold a lot of question marks. But looking back and looking forward I can say that whatever is in store for me, I can handle. The list of possibilities that fuel(ed) my fears is now like a crossed off grocery list halfway through the store. I’m not sure what that will mean, and I still shudder to think of what I may or may not have to add to my column of coping. But I do know this, my power to persevere has served me well and when it comes down to it, living this life of challenges is always better than the alternative. And conveniently the world of medicine and pharmaceuticals is working hard every day on my (and my peers) behalf to make sure that the second half is easier than the first. How great is that?