Monthly Archives: July 2008

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A letter to Dr. Jill Bolte Taylor

Dear Jill,

I have just finished reading your book, My Stroke of Insight, and I am so completely moved by your experience. While it is true that any person with a brain would be taken in by your story, my relationship with my brain has been a challenging one and thus it is that much more a significant read for me. I have just celebrated my 20th anniversary with Multiple Sclerosis and your book has driven me to revisit my relationship with said brain.

Over the years my brain has been many things. My brain was labeled average in a lacking school system that didn’t recognize different learning styles. As I entered college and tried to see what it was made of, I was diagnosed with this unpredictable disease. From an early age I learned what I can’t or won’t be able to do.

But my brain ultimately came through with a positive attitude that has served me well in spite of life’s pitfalls. Experiencing my version of MS, I grew stronger in outlook and my brain and I lived happily until the new next episode hit and I feared I could not handle it. But we became partners again as my right hemisphere gave me courage and my left side joined in with a plan to manage the loss. This sequence happened repeatedly as I lost abilities or gained symptoms. Ultimately my strength of character (right hemisphere?) came through and served my brain well.

The relationship with my brain remained stable as long as I could handle the blows that my immune system was dealing me. When symptoms arose I doubted my ability to incorporate them in to my daily routine. Depending on the symptom, the arc of acceptance varied in size and length. Pain was one that was particularly hard to handle. Luckily my brain found a way to make it more manageable… and eventually a new circuitry was established with which I could cope. So you see the rollercoaster ride my brain and I have been on these 20 years.

What I realized in reading your book is that my brain deserves applause for the cellular genius that it exhibits everyday. My brain isn’t my enemy… it’s a victim of these unwarranted attacks from my confused immune system. It needs the encouragement and rewards that you have illustrated in your story. There are many symptoms for which my brain has found a new neural network – giving me back abilities I’ve lost. For the symptoms that are constant I realize now that I can rally behind my brain in an encouraging way.

Your experience is beyond the comprehension of most people. To have a tabla rasa, to rebuild from 0 is more than most of us can begin to imagine. Your telling of that experience is awe-inspiring. But more importantly you have shown me (and so many others) that these internal conversations, and use of energy that is beyond our human limits to understand is in fact scientific… not speculative hope. And that is power beyond our neurons.

Thank you Dr. Bolte Taylor. You have given the world an enormous gift. One that I will enjoy daily on this neural escape called life.

P.S. I will most certainly donate my brain to science.

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Behind the Scenes

For the last week or so I have been home with plenty of time to write in my blog. So why haven’t I done so… There is something about my experience with dizziness that has made it difficult to be productive in spite of the fact that I’m not dizzy when I sit at the computer. The emotional response to anything that MS puts on my plate is multi-layered. Nothing made it clearer to me than reading My Stroke of Insight by Dr. Jill Bolte Taylor. The text is having a tremendous impact on my day to day experience with my compromised brain.. and I’m writing about that now- behind the scenes.

Look for that post soon.

Thanks for not writing “check in on this blog” off your to do list~

ag

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MS Technology Collaborative- MyMSMyWay.com

In early 2007 I was invited to be on a the steering committee of the collaborative efforts of Microsoft, the National Multiple Sclerosis Society and Bayer Pharmaceuticals. At that time they were composing an outreach mechanism to inform us (the MS community) about the technologies available that help with various symptoms that we struggle with. (Especially the technologies that help us stay connected, like that screen you are sitting in front of, for instance.) And they were turning to us for insight on how to best communicate that information.

How great is that?! It was certainly exciting to be a part of this panel of people selected from across the country to represent individuals with MS. They were (and are) truly interested in what we had to say, and even better, they put that information to work. This is evident with the first development: mymsmyway.com. This site is the portal for resources. The one-stop shop for the information you need to know about the latest and greatest technologies that are available to support your life in the digital world.

On this site, you will find the snapshot tool. With this tool you can focus-in on what your needs are, and what exists to support those needs. For a quick preview of what those technologies are you can review the section marked Technology Tips. But if you prefer a more visual learning style, check out this youtube video. There you can see the actual gizmos in action that can help you solve the problems you hadn’t considered solvable! (and when you get to the end you will even see yours truly speaking the praise of this effort!)

So the collaborative continues and thus the steering committee is being utilized to inform outreach of more tools and more projects. It is truly an honor to be on this committee; to represent a group of which I’m a 20 year member.

So that brings me to the question: Why haven’t I brought this topic up on this blog sooner? It’s such an obvious venue for discussion… and certainly of interest to this blog’s expanding readership of individuals affected by MS who are clearly interested in functioning well with their computers! For an answer I glanced through the archives of my blog entries. And what I found was that I didn’t really start writing on this blog with regularity until December. (see blog rhythms) In fact I didn’t even start discussing MS SoftServe until after that time. So, it’s not hard to see what the lag time for this entry was. I clearly hadn’t gotten my “blog-groove” on until then. It’s hard to remember a time when I didn’t use my blog as a form of expression. Can it really be only 8 months ago??

Whatever the case may be, I’m bringing it up now and I look forward to keeping you informed about the many resources that this well-informed collaborative is bringing to the table. In fact… I will add them to my blog roll right this minute! Check back to see more info about the MS Tech Collaborative using that tag. I assure you I will be more current with my updates!

Thanks for reading!

Amy

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Still Dizzy After All These posts…

So this last week I’m woke up dizzier than the night before. And what originally would fade is now constant. My MS Recovery Diet variation is still up and running, and as I try to put a finger on the how and why – the reason keeps changing positions. It’s so often that I seek out reason for a sense of control… But, as with anything MS, control is elusive. Is it another attack? Is it the same symptom cropping up in these hot summer days? Is it cumulative – and anytime I exert myself I should expect to pay for it in the following weeks?

I suppose I will just have to keep on, keeping on and categorize after the fact. Yes a more organic experience- but one that doesn’t grant me any sense of control. Perhaps I will remember that reality the next time I try to put all the symptoms in neat little boxes. Perhaps not. After all, I’ve had these initials under my name for 20 years and I still haven’t figured it out.

Note to self: check back on this entry the next time I search for reason.

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“A stroke of insight” in my life of learning.

I recently became aware of an amazing presentation given by a brain scientist named Jill Bolte Taylor. Watching it, as I have done a number of times since, really changes my life perspective. It’s a helpful recharge on a number of levels, especially when the temperatures are nearing 100 degrees and my myelin is sorely missed!

I hope it speaks to you as it did me.

~Amy

http://www.ted.com/index.php/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

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To Podcast or Not to Podcast

A number of people have suggested that I start a weekly podcast. I’ve considered doing so I’ve started wrestling with the obvious. What would I talk about? “Oh you have tons of things to talk about” they tell me. While its true that I’m rarely at a loss for words, is it really something that warrants a downloadable option? Would the production thereof fit in to my already compromised schedule? Since people keep throwing yes-es back to all of these questions I’ve left the thought on my plate of considerations. This may be a side effect of working at NYU-Film School – lots of creative minds bursting with positive reinforcements. Although no one is afraid of the constructive criticism either… so I take a moment and think about it.

And the more I think about it, my carefully edited essays on this blog resemble written podcasts more than they are blog entries. Hence the days that are required to “produce” them. If I changed my blog tactic to something more conversational and use my edit time to produce podcasts.. it might just work. But I can’t jump in to this without something carefully crafted.

First I will look at the rest of the MS Podcasts that are out there and see if there is a place for me in the existing network. Or, and unmet need that MSLOL might fill.

I’ll let you know what I come up with, meanwhile let me know what you think of podcasts…

~aglol

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MS SoftServe Update July 2008

I suppose it is better to date these ‘checkins’… because listing them in numeric order can be hard to keep track of.

As some of you have been following, I’m dedicating every free moment outside of my job, parenting and blogging to the production of MS SoftServe. Incase you aren’t one who is in the know, MS SoftServe is a website dedicated to customizable learning for people with Multiple Sclerosis. A place for the person who has MS to control the information they are getting and how they prefer to learn. This is an empowering method that prevents anxiety as the person determines that what and how of the process. (Check out this video for a more succinct explanation.) So the ongoing question is… What’s going on with the SoftServe thing??

If you’ve been checking back regularly, you have noticed that the development of MS SoftServe has paused. So let me take a moment to tell you that behind the scenes a lot is happening. Although it seems like a fast paced game of hurry up and wait… what it really entails is getting the message to as many people as possible who recognize the need. Although I have assembled a great deal of information to do that virtually, it seems that their is no replacement for the impassioned pitch. And that’s what I have been up to. So, I’m off and running, with one pitch leading to the next. And they told two friends and so on, and so on.

I’ll let you know when I find a break through… or you will when site development pics up again.

Thanks for reading!

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Left Out

Since I was twenty months old I have felt left out. Everything was going along okay and then my sister was born and it really messed things up. Although I don’t remember the day, I am told that when my mom stepped out of the nursery I covered my newborn sister in talcum powder– the earliest attempt at white-out on record!

Over the course of my life I repeated that pattern. In grade school, in highschool… early college and even after I graduated- I was always drawn to friendships in threes -reliving that circumstance, creating the triad that inevitably leaves one of the three feeling not a part of things. It’s a lait motif; a constant comment for my years of therapy. I learned that I was likely recreating these scenarios to get get some resolution. In retrospect maybe it was just preparedness training.

When I got my diagnosis at 20,   that “left outtedness” was promoted  to a starring role. And while I try my best not to dwell, the reality is that there is so much that I can’t participate in. On strong days, I can say.. “but there is so much I can do”. Some days I’m not feeling so empowered. Those are the days when I can’t stop thinking about the things I’d like to do. In the summertime it feels like a regular occurrence.

The pre-baby years of my marriage were much more controlled. Avoiding heat and spending a lot of time doing what I can do wasn’t too much of an effort. (I married a man that loves the social scene of a cold dark movie theater as much as I do!) But when my daughter was born it quickly became a different ball game. Cut to today and we have a 6.9 year old pulling us outside for a wide array of activities.

My husband is happy to acquiesce to all of my daughter’s outdoor pleasures. He spends many hours playing catch, jumping rope, being tagged and “duck duck goosed”. The social ops that we are part of as parents are also new frontiers. The invitations for beach trips, the swim clubs, the Bronx Zoo excursions… the fun outdoor activities that complement every families summer calendar are ongoing. And the feeling is not only me being left out… but concern that Madeline is not getting to experience all that she should-and it takes on an energy of its own.

Yesterday we went for icecream with my husband and her friend from camp. When her friend wanted to know what flavor I’m getting, Madeline said “My mommy can’t eat ice cream because she’s trying to make her MS go away.” While I don’t expect that my new way of eating (or not eating) will make my MS go away, it was refreshing to hear the interpretation that Madeline stated so simply.

And it got me thinking more about her point of view.

Madeline doesn’t feel left out of anything. She isn’t competing for anyone’s attention nor does she seem terribly concerned when her friends are enjoying things without her. I expect when she reflects back on these summer days she will not be remembering anything but the fun she had and what we all did together.

Yet on a regular basis, I wish I could do more with her. I can’t help it. I don’t feel sorry for myself, or waste too much time thinking these thoughts… but the reality is that these feelings are here and I guess I should recognize and honor this part of my experience once and a while.

So that is what I’m doing.

Thanks for reading.

~Amy