Two weeks ago I participated in a NonProfit Boot Camp put together by Craigslist Foundation. You know, the people that have given us access to information (fab sales!) in our community. In addition to getting a lovely dining room table, I can thank them for providing a new level of motivation in getting SoftServe Matters up and running. The timing for this was perfect as I just received a call from the IRS that my application for 501c3 (tax exempt) status is nearing completion.

So, let me take a moment to talk about MS SoftServe, its origins and SoftServe Matters the non profit that is dedicated to providing meaningful learning about chronic illness on the Internet.

While getting my Master’s in instructional design in 2006, I realized that the problem I have with learning about my MS is universal, and can not only be resolved, but it can also become an empowering tool for all patients with chronic illnesses using the technology of today.

I, like so many at diagnosis, struggled with learning about MS. The anxiety of not knowing what I would be coping with the next day, month, week or year made it impossible to learn more about this disease. Everywhere I looked I feared,  Will that be me? In 1988 the Internet as we know it was not yet available.  Any effort I made to learn more from the resources that were available back then resulted in paralysis by fear.  As a college junior I struggled to come terms with this unknown in between my studies and filmmaking assignments. Twenty years later my struggle continues as a variation on that theme.

While I was afraid to learn about the diagnosis in 1988, the twenty years of living with MS forced me to revisit that emotion over and over again and I continue to do so to this day.  As I learn to cope with the changes in my disease, scenarios that may include a future with the symptom de jour play themselves out in slideshow form.  I want to be my own best advocate, to learn all there is to know about managing life -not only on a symptom level, but also the disease itself – and all of the scientific advances in treating MS. I want to learn about how to choose medications for the varying symptoms, and cope with their side effects. I want to be the master of the unique disease I have, so I can teach to world around me what I’m experiencing and why its happening. But I continue 20 years after this diagnosis to tread with fear when I need to learn.

The Internet affords us so much access to information, its difficult to remember a time when we didn’t have the answers to things. And while it is a wondrous resource for facts and information (No more social bets of who was that actor? and I think I saw him in the last Woody Allen film …  leading to furious page flipping!) trying to learn about anything that has emotional implications is practically impossible.

Multiple Sclerosis is completely unique for every person. That fact is at times frustrating and at  times reassuring. Yet because there is absolutely no way to predict what is going to happen to you,  (or me, in this case) I am left vulnerable to those possibilities. And that is exactly what is force fed to you when you sign-on to learn something. Every possible consideration is thrust at you, challenging my ability to cope with what I already have on my plate; and making my fears and nightmares more specific.

So, from this ongoing need along side my recent education in instructional design I created an approach that would be the key to harnessing this vast amount of information.  It would allow for every person with MS to log in and establish her/his preferences of the what and how s/he wants to learn about her/his disease. The learners are in complete control from start to finish. Creating a safe space for learning about their version of MS. Through scaffolding, as opposed to lists the user will deliberately choose the specifics of the lesson. And once there, s/he will be able to establish and save how s/he prefers to learn.

I know from my experience that I am a visual learner. If I can see a short animation describing a concept it is much more likely to stick with me. That isn’t the case for everyone though, some people prefer to read it, or download and print it. Maybe s/he want to watch and listen to a medical professional describe the concept, or a peer with MS. This site will provide multiple options of how to get the information you are looking for. It will also provide an opportunity to chose the language level that you prefer.  (Simple, Everyday Scientific) And the site will go beyond a customized MS education. It will be a space where people can interactively learn how to talk about their version and teach people about that unique experience. There will be a place that demystifies the News about MS, and a space entitled Understanding and Communicating with your Doctor. The site will be filled with powerful tools for managing a life education about MS, such as creating an online space that is individualized– a URL for friends and family to sign on to to learn about your exact version of MS. (Forgive me for what was a pronoun nightmare in that last paragraph!)

For a person with MS it will be a safe, reliable place for information and education…one that is customized to meet her/his individualized needs through customization.

SoftServe Matters is the non-profit organization that will fund this and other sites for a variety of chronic illnesses.

Because coping with a chronic illness is a life of learning. And why shouldn’t we have a place that knows us and works to accommodate our needs;  to empower each of us to be our own wise advocate and the educator of all who we come in contact with in life.

It’s a level of control we all deserve when a lack of control is what we are all too familiar with.

I encourage you to share your thoughts here; and thanks for reading!

~Amy