“this” ability

It’s official.

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.

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MS SoftServe -More Progress

I think this coming week we will be a productive one for MS SoftServe. We’ll be editing the video that will explain the staging ground. We shot it intermittently between work… trying to pop in and grab a shot whenever we could. That resulted many variations on light….and shots that look just slightly different. I’m hoping we will be able to compensate for this variation by making it compelling in content if not style.

It was my desire to make the development of the site follow a similar approach as the SoftServe technique itself. For example. You will have the option to download a pdf of the information, listen to the content being spoken, as well as watch a video of someone (in this case me!) explain the concept that is being developed. It would seem egregious to make a developmental site that doesn’t follow the theories of instructional design that the site being developed is all about!

We will also start the design of the map of progress. This area is very exciting to me. It will explain what it is we are planning on developing for MS SoftServe. We are going to continue to develop the site as long as the ideas and needs continue to flow. I will look forward to the feedback and suggestions that people from the MS Community world-wide have to offer. It is an organic process…. growing and changing as the needs of this population evolves.

Another exciting element (are you getting that excitement is the lait motif here!?) is that SoftServe Matters, the proposed non-profit established to create MS SoftServe and SoftServe web-learning for other chronic illnesses is likely to be through the process of filing with the state. With that we will commence with our fundraising effort, full-swing.

Thanks for reading…and if you are following the progress and have any questions or comments… please respond to this blog, until the site is up and running.

In the meantime. Thanks for reading.