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.

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.

MyMSMyWay~ Refine and Relaunch

A number of months ago I wrote about MyMsMyWay.com. (previous post link here) The website that provides valuable information for people with MS who use their computers. (I trust most readers of this blog fall in to that category!) This collaborative of Microsoft, Bayer and the National MS Society sought the counsel of 8 individuals with MS (myself included) from around the country to guide the production of this site. In doing so, they have come up with a site that not only has a wealth of information, but also considers our experience in its design. Their most recent update makes it easy to find information about how you can resolve challenges that people with MS may have working with our computers. The new and improved version provides a more user friendly interface and considers some of the principals of MS SoftServe. (ie. people like to get information indifferent ways-as seen in a listen to feature of the site that will be added soon.)

So take an opportunity to check it out. I’m quite sure that you will not only find helpful information, but also a resource to rely on as your experience with MS and your computer may change over time. To get a complete idea of how your individual needs can be met, start with the snapshot tool. (You can get there by clicking on a picture of me and my daughter.)  If you have any thoughts you would like to share, you can do so on the site in the “About us” section. Or feel free to talk about your experiences and or needs here, I have an inside line. :)

ag