The progress of MS SoftServe is slow and steady.
As I work towards the immediate goal of editing the interview footage that will support an explanation of the site, I am seeking the balance. It’s a balance many struggle with. Full time employment (administrative staff at NYU-Tisch Film and TV), home life with my husband ( a photography professor and artist) my 6.55 year old daughter in first grade; a welcome distraction with homework, games, violin, conversation, reading and must see movies. (Horton Hears a Who ) Oh yeah, and a certain amount of maintenance :). And of course Multiple Sclerosis, something most of the people reading here can relate to, throwing in a new challenge on a daily basis.
Yet secretly, behind the scenes I’m editing and writing and planning. Sometimes it’s not in a tangible way; sometimes its progress that is only evident on a neuron-ic level. Keeping company with my myelin, or in some cases a lack there of :), it is progress that I can be excited about.
On a more obvious level I am working to start my consulting business SoftServe Central- Educational Concepts in Online Learning. Using my expertise in instructional design combined with almost 20 years of MS (come June 2008) I consult on how to design ideal education for those of us with this label, this lot in life. How to speak to us, the patients in a way that recognizes what our experience is and that we are unique individuals in spite of a common diagnosis. To explain how to connect with each of us with our individual version of this disease without alienating any one of us.
I’m also in the final stages of developing a non-profit organization called SoftServe Matters (grey matter, white matter, your funding matters!) whose mission is to create educational websites for individuals who need to learn about any disease in a customizable, reduced anxiety way.
Then there is my blog and the greater world of MS bloggers. I would love to sit all day and read and write. I want to tell the bloggers I’ve read (and continue to read) how significant what they are saying to is to the MS world and the greater world of people who also happen to be patients. I want to connect to more people, who like me and many who I have met, struggle to learn about their constantly evolving unique version of MS at a safe place that to be confident we aren’t going to learn about things that aren’t relevant to us; facts that will cause anxiety about our uncertain future. (I want to edit that last run on!)
I want to work on MS SoftServe, a solution that is waiting patiently for funding
I have to keep this hope and desire quiet while the rest of my life happens. I need to find balance. Don’t we all.
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.
Today was a good day of shooting. I have a set up in an adjacent office and Bonita (my webmaster/director/vegetarian cook adviser extraordinare) assisted as we embarked on our third day. It’s easy for me to get honestly enthusiastic about the website in spite of the fact that I have been discussing it for 3 years. I guess the hard part is getting me to stop talking… and focus has always eluded me. 🙂 What I set out to do is explain what MS Softserve is, why we need it, and ultimately what this “staging ground” concept is.
From the very beginning I have surrounded myself with great advisors. I think that is truly a skill I have mastered in my late thirties. Being married to and artist, photographer, instructional designer is very helpful. Keith’s creative thinking and strong resources have proved very helpful in this process. One such connection is to Doreen Stiskal, a PT Phd who is also an expert in Instructional Design. As I was completing my thesis, Doreen and a number of other individuals from Seton Hall (where Keith worked at the time) offered a critique and practice presentation which turned out to be particularly informative. Much of her early observations shaped my presentation. So as I set out to produce MS Softserve I sought her counsel yet again.
She had some terrific advice. As we discussed all of the areas that I am working towards expanding… she quoted Guy Kawasaki “Don’t worry, be crappy.” (“Revolutionary means you ship and then test… Lots of things made the first Mac in 1984 a piece of crap – but it was a revolutionary piece of crap.“) That really spoke to me. I could work forever on what this needs to be before I launch it. At that rate it will never get launched.
Get something up there. And start filling in the blanks as it is developed. She sited Brad Pitt’s effort to rebuild New Orleans one room at a time. You can sponsor a bathtub if that is the level you want to contribute.
Recently Madeline was invited to a birthday party where in lieu of a gift, it was suggested to donate to heifer.org What a great way to explain charitable causes to a little person. On the site you can contribute real things to real people. She decided to donate her money to bring a box of chicks to a family in Africa who can use them for to start a business.
So, with that in mind… you can go to MS SoftServe and choose one particular area of study to have developed. Perhaps your are a big fan of the Central Nervous System and you want to see that prioritized. You can make a contribution to complete that entire section. If you would rather contribute a lesser sum, you can sponsor just an animation in that section. The map of progress will be the key to see what areas have been completed and what is to come.
This site will thrive as people with MS help to shape it. Participation can occur on many levels. Whether it be the content of the site or the methods of learning, you can put your mark on what this site becomes. By doing so, you will help the site to serve a wider audience.
As of today we have finished taping the video for the staging ground of MS SoftServe. The website is being produced, the video edited and the content developed. We expect to have something running within the next two weeks.Keep checking back under this category. (MS SoftServe TimeLine)Feel free to post your thoughts!We’d love to hear from you.Amy
Tomorrow when I get to work, I will be using all off-moments to videotape myself speaking about the important aspects of MS SoftServe. It feels like I have been working so hard on these incremental accomplishments toward to larger goal.
Yet in spite of my constant effort…and my ongoing advances, there are days when it feels out of reach. Days when actually writing about my progress on my blog seems insurmountable. If I just pass this small milestone (getting http://www.MSSoftServe.com up and running in a skeletal form, get SoftServe Matters approved by the state as a non-profit, get people to come read my blog and develop an audience, figure out a way to work on all of this full time, start planning a fundraiser for MS SoftServe…) then it will all fall in to place. Or will it?
Maybe this is what starting up always feels like. Forging ahead with a life dream that is self-guided is probably full of these mini-accomplishments that mark the bigger picture. I look forward to actually having a moment to spell my whole project out to anyone who might be reading this. I look forward to having a place to create all the MS SoftServe proposes. I look forward to benefiting from what the SoftServe approach has to offer.
But for now, I look forward to going to sleep!
I ‘m not sure how it is that I’ve set up this blog to discuss my life of learning with Multiple Sclerosis, yet I haven’t once mentioned the web site I’m developing for that very purpose. With that I have set up a new category….MS SoftServe. To read up on the status of this site just check of the category on the right. There is much to report!