I was recently interviewed on blogradio by Rae Edwards of SwaggahBoi RaeDio. Please take an opportunity to listen. Put it on your ipod to hear while you commute… mill about… eat … sleep… think. Wherever it fits!
With a June exacerbation my perspective changed. The dizziness intensified and I was unable to move without finding myself in a turbulent ocean. It was as if waves were pushing me in both directions, a sensation that is by no means easy to describe. That, in concert with a number of other challenging symptoms, landed me on 5 days with methylprednisolone– the classic treatment for an MS episode. One that I became all too familiar with since long before disease modifying drugs hit the market. With a synthetic burst of energy, a convenient side effect, I celebrated my 41st birthday and 21st anniversary of my MS diagnosis in one day. And for once, a side-effect was appreciated… allowing me a state of being beyond my normal abilities. I milked it for all it was worth- went out to eat for every meal and enjoyed many moments on this significant day that fell in the middle of this unfortunate episode. And beyond the steroid boost, I thrilled as the numbers grew on my facebook-birthday-fundraiser for MS SoftServe. Matching the frequency of my accelerated heartbeat, each one of my digital re-introduced friends wished me well. A positive reinforcement only known in modern social-networking. And as is the case after any all day party, I was left tuckered-out with a virtual house to clean. Coming off the 5-day intravenous treatment was more challenging than any post-party metaphor could convey. When all of my natural adrenalin rushed to the empty space that the steroids left, my system crashed. For over two weeks I slept and slept and slept. I’ve had many experiences with the steroid shock treatment and none of them ended like this.
When the neurological dust settled, I was left with considerable movement-based-dizziness in addition to the other symptoms I carry like luggage wherever I go. But this was different than the episodes that have preceded it and not only because of the symptoms that are now constant. In this case I realized something that I hadn’t known before.
The post-episode halt left a space for conversation and understanding at new levels. A system reboot- a defrag- reconnecting lost signatures. Apparently every day that I left my house with foot dropped, vestibular disturbed, movement compromised, he feared the worst. This most optimistic man that I married feared that I wouldn’t make it through my work-day without injuring my self. And every night that he was teaching and late commuting- he heard in my voice the exhaustion that prevented me from being the mom I needed to be while he wasn’t yet home. This drive in me to persevere no matter what MS threw my way, was in fact weakening the fortitude that kept my foundation strong. My perseverance was compromising every thing and every one. I don’t know where to start in this long list of ironies.
So through his eyes, I was able to see that working every single day for 7 hours plus the commute to NYC was not evidence of how much I could endure- how MS didn’t own me. But was instead the ingredients that compromise my ability to function at the level that all three of us deserve. I wasn’t spitting in the face of this disease, I was giving it control over the wrong parts of my life… and by taking myself out of the most visible realm of accomplishments “…and I work full time too!” I could concentrate on the most important one… being at home and awake for my family.
And so, as the papers are finalized and my role with the university completed, I’m finding new abilities in this label. My limited energy is now made available to my magical daughter and my dear husband. We all deserve more than what wasn’t left at the end of the day. And with that I’m learning that this ability– is the greatest of all.
I look forward to finding more than I expected with this “official” disability. Something that could only to be realized when I stood still long enough to see what they had been pointing at all along.
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.
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.