Category Archives: LOL-Day to Day

The dailies for this life of learning.

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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

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Blogdentity

I’ve been thinking about what defines me and who I am in the digital world. The whole is, of course, not the sum of my parts -or my usernames. As I explore my definition with MS, a mom, a wife, a daughter, an instructional designer, a blog-journal-ist (not to be confused with a journalist) a friend, a lover, a partner in crime… as any of the roles I play out during my everyday- I’m looking more specifically at my digital presence. Who am I in this world and does it translate to my virtual experience? The spontaneous, easily excitable-me, probably doesn’t come through here.. or does it? With enough probing, one might learn of my compassion for others, my desire to help those who need it and my hopes/expectations to make a difference in the world. But does it really traverse the pixel divide?

I spent as much time as was available after my home identity roles were brought to a moment of rest- (that moment comes a lot sooner than I would like as my MS draws the finish line in surprising places) I began reading MS blogs. (Am I defined by my run-on sentences?)

So, what was I saying.. oh yeah.. MS Blogs. They certainly run the gamut. Everything from
– what people are doing, thinking, and feeling at every minute of the day, to literary pieces that get me thinking. (see Merelyme‘s MS Blog and her further inspiring writing blog) And I’m left with the question: Where do I fit in to this spectrum? I’ve tried to make my entries a daily happening. I understand that increases readership – and I do enjoy knowing that my words are being read, yet I can’t bring myself to record every thought or move, especially when these thoughts contain nothing significant. (not that there is anything wrong with that!) I imagine that sharing at that level is very satisfying for many. It’s just that my internal editor is a bit of a hard-ass. Whatever the filter is that I run these entries through requires… requires.. I’m not sure what it requires, but I can tell you that its less animated, spontaneous and compulsive than the me in real time.

I use my full name wherever I can. When I comment in forums, when I post here.. when I register there. Even my login name is just an abbreviation of my full name. (amygtz) I just have problems constantly renaming myself as the digital world requires. I feel like it dilutes me. Hell.. I didn’t even change my name when I got married!

And when it comes down to it- an ID by another name would likely smell as sweet. Or would it? When we connect with people via a keyboard and monitor, even a rose would not smell sweet. So where is our identity online? In the real world- are we defined by the clothes we choose, the cell phone we carry, the songs we listen to, the expression we wear on our commute, or the style of our hair? To some degree yes; when that is all one has to go on. Well, digitally we have even less to go on. All we can consider is how clever your ID name is, and the words you type. Although, come to think of it, maybe its better that way. Maybe its more. Considering a person’s innermost thoughts without the superficials that cloud a first impression can be very powerful.

And when all is said (written) and done does it really matter? Do the words we type make a difference as they jet across the world virtually. Yes. I think they do. And when the unadulterated identity flies along with it, let it go. It’s so much more than the pictures we hold of ourselves from the childhood of our pre-virtual world. Those images tell a very small part of the message. Our usernames and blog entries will tell our future selves so much more. If they make it to the next operating system.

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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

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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?