Writing this essay seemed to bring together two major, and usually distinct, roles in my life into one profound moment – to adequately capture that, I have to give you a little background.
In 1988, at the age of 20, I was diagnosed with Multiple Sclerosis. After an earnest attempt to learn about my new diagnosis in a pre-Internet age, I swore off seeking information about MS. Each resource I explored only served to fuel my fears about my unpredictable future. But eventually, with the help and guidance of medical professionals and friends I met along the way, I did learn what I needed to know – which included ways to protect myself against information I did not want or was not ready to absorb.
Having an incurable disease that is unique to each individual and constantly changes requires a life of learning. What I need to know to manage and treat my symptoms is always new, and what the medical community knows about this disease is also constantly evolving. If I want to stay current on my treatment, I need to be active in my education. Yet to this day, when I approach learning on the Internet, I’m afraid of what I’m going to be exposed to. Just today I was reading up on existing blogs and I learned that MS can cause you to lose your voice. Now I have new content to add to my what-ifs.
As can often be the case, experiences of unfulfilled need drove me to find way to fulfill that need, both for myself and for others. For the past few years I’ve been knee-deep in my thesis for a Master’s in Educational Technology from NYU – designing a website for individuals with MS. MS Softserve is a website that allows individuals with MS to learn at their own pace, so that they can avoid the anxiety that trumps any learning effort. While designing the site, I had academically exhausted the theories on how people learn most effectively and what can be done to encourage the learning process for those who are experiencing anxiety. I learned that an excellent way to manage anxiety and encourage learning is to give the student control.
This is a powerful concept to me, considering that having MS is all about losing control. MS Softserve gives control to learning process, allowing users to choose what they want to learn (without being exposed to unwanted information) and how they want to learn it, be it text, or spoken word, or animation – the list goes on.
While all this was happening, I also happened to be going through the more common (yet equally individualized) experience of having and raising my daughter, Madeline.
When I sat down to write this essay, I was struck by the fact that all I had been studying could be seen in my efforts to speak to my daughter. Trying to determine when the right time is to give her the right information – something that could only be dictated by her – is just like my efforts to reach the users of the site I am developing. After switching my channels from student, to person with MS, to instructional designer, I now had to switch to a Mommy who understands all of these things…and one who could deliver information to my daughter in her self-directed way.
By giving information out gradually (not unlike letting the users of my site choose the specific information they are ready to learn) and allowing Madeline to dictate when she is ready for more – only then will we have a “meaningful learning experience.”
I think that by sitting down to write this essay, I began to understand that reality on a new level – on a thesis-writing level. So now I can give her what I’m trying to give people with MS who need to learn about their individual disease – what I’m trying to give to myself by limiting certain exposure that would make me afraid to learn more. I can let her direct the curriculum. She will let me know when she wants or needs more. It’s what I’ve studied for my degree, and what I live with my MS. Now it is clear to me that it’s playing itself out in my home, with the greatest little learner I know – one who is also my favorite teacher.