Monthly Archives: June 2008

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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?

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Sum Sum Summertime

The hot summer months are usually coveted. For most people they offer vacations, trips to the beach, lots of fun in the sun. For many other people the sun is a part time enemy. When you have MS the sun is the source of heat that swells the neurons… making for more challenged message conducting. (ie. exaggerated symptoms and flare ups) But it also is the natural source of Vitamin D, that individuals with MS lack. I’ve learned to enjoy 10 minutes of direct sunshine as a daily dose. After that I usually run for the air conditioning to cool off. It’s no wonder that I’m feeling less than adequate as the summer approaches. Feeling like my ability to play and be a part of things is more compromised… I try to combat that emotion and take it on as a challenge.

I just have to be more creative. There is always a solution that will satisfy my family and the MS in me.

For now, I’m thinking it over as I sit in our backyard watching my daughter play in the pool (the ones that “inflate” as they fill-up with the water).. doing her made up strokes. “Hey mommy, do you want to see the dolphin ?” She proceeds to “dive” in and is on to her next move.

Maybe I don’t need to think so much… maybe it will just happen.

Maybe it is happening.

~more later

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Dizziness Reduction and Alternative Reporting

So here I am, a month after starting the MS Detox Diet… or my version of it. And my dizziness that began way back when in December is subsiding. It happened so gradually I practically didn’t notice it. In fact the change was so subtle at first that I couldn’t determine what felt different. Just that something good happened. And the sensation is still present when I move certain ways- reminding me not to get overly confident. I’ll turn my head as I’m walking away and everything shifts. But for the most part it’s taken a break. It’s off center stage and blending in to the scenery. No longer does the world as I perceive it change when I go from a seated position to a standing one. Such a smooth and gradual transition… that it wouldn’t be difficult to forget. But now, when people have the courage to ask me how I’m doing… I excitedly report something other than status quo. And I remind myself to not get overly confident as I tell them that is crops up periodically. Don’t get used to this … because it can change back in a second. Since my “recovery” I have reverted more than once. As Dr. Verter, who has been treating me more regularly said, “don’t expect that this will be anything but a minor setback”. And he was right. And so it is. But I will keep my fingers crossed in an “un-superstitious” way. Hoping, praying? To the higher power that exists in this universe that this will be all but a distant memory to recap in a “what was” report of my Multiple Sclerosis.

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MS SoftServe – The word

So the documents are off to the IRS and although this means that I will be entering in to a new sphere of red-tape… I’m excited. Each small step brings me closer to the larger goal and that is very satisfying. Maybe the hurdles jumped and goals achieved are what is to be on the landscape of SoftServe Matters- the engine behind MS SoftServe. There will be web development and grant applications. There will be involvement from those who want to put their mark on SoftServe and ultimately more sites will be generated for more illnesses. Helping more people who struggle with information overload but want to learn.

And then there were faux pas.

So with the new video up on mssoftserve and youtube I thought I would reach out to the people on patientslikeme.com. It’s a site that I had set up my profile– which includes all of the details of my history with MS, the treatments and otherwise personal information that seems natural to share here. I would review the chats, being careful to steer clear of information that elicits anxiety. Sometimes I would make a comment, but mostly I would just read and listen to what people are saying. Hoping to add to my understanding of this diverse group of people that I am a part of.

So I set up a forum to inquire how people on plm prefer to get information about their MS. I explained what I’m doing and invited people to check it out and let me know what their experience learning on the internet is.

Imagine my surprise when I got this as a response:

“Please explain the reason for this post. I have looked at both sites and it is really confusing. I think the hmmmmmm is now what are you selling.”

“…..selling or smelling a rat?”

Ouch! Okay with further explanation the person retracted the “rat” comment… but that sure did hurt to read. I guess in these times one can’t help but to be wary of these types of things. I was in a bummer of a mood looking for a pick up when I signed back on the site. Hoping to see supportive comments and instead finding the contrary. It was unfortunate timing.

But it also was an opportunity to learn a lesson.. which I definitely have. In some ways it is like a code of honor. If you aren’t an active part of this group then it isn’t appropriate to speak to this group. Just being registered isn’t enough. The fact that I hadn’t yet posted much to the site was a red flag to the involved members that I am not one of their neighbors, and they have no reason to trust me. I get it. Now I’m chatting more, and blogging less. Hopefully it will balance out.

~

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Some images of the Copaxone syringe and collar.

This little plastic item makes giving an injection a whole lot easier. I’ve never used an autoinject as I started this medication in 1993 and they didn’t yet exist for Copaxone. (then Cop I) Since these syringes were released with the tiny little finger supports this collar makes a huge difference in getting more control of the injection process. I got mine at the Shared Solutions site for free, although when I went back there to see if they are still offered I couldn’t find them. I have a few extras if anyone needs one. Drop me a note and let me know. If you aren’t doing an autoinject these collars make a big difference.