Recently the New York Times added MS to their series “Patient Voices”
My husband edits the newspaper for me, steering me away from things he knows will haunt my every thought and toward the articles that intrigue and inspire me. Since we have made the green move of canceling our subscription for the online reading, I get emailed links instead of paper pushed past the orange juice at the breakfast table. Not as romantic… though sometimes more effective. Though I miss carrying those folded sections on to the train every morning.
So I avoided the MS Voices one for a few days. These articles always pack a heavy dose of approach/avoidance for me. Do I really want to know about these individual cases? Are they going to change how I think about my version of MS? That is always the risk. I threw caution to the wind and listened, and read. And although I walked away with some lingering thoughts that were not pleasant, it was an important read in my effort to advance how people with MS (and all chronic illness) learn on the internet. I knew I wanted to write a letter to the NYTimes and also post on the blog. I am always interested to learn how people with MS experience learning on the Internet.
I haven’t sent this comment yet… I’m mulling and editing and mulling. I thought I’d post it here while I consider it. Your comments are welcome and encouraged.
Dear Editor, (or whatever the appropriate salutation is..)
Thank you for giving a voice to some of the individuals who live with Multiple Sclerosis. Watching and listening to their experiences brings out many reactions; personally and professionally.
As a person who has been living with MS for over two decades I connect with each of these stories, with an understanding that ranges from “I know what you mean” to “will this be me?” The latter of which is the approach/avoidance that I experience with everything I read or see about MS. I have met many people with MS over these 20+ years that echo this sentiment.
It’s hard to satisfy such a varied group of people. Any media outreach is obligated to represent. If the sampling doesn’t provide a person from each “walk” of life then someone is alienated. In doing so however, many people with MS who are fearful of their uncertain future are not interested in reading more. Though some want to know every possible outcome so that they can plan for what might happen, many don’t want to waste valuable energy worrying about something that may never occur. It’s counter productive on so many levels most significantly, managing each day do be the strongest one can be within their individual circumstances – emotionally and physically.
It is this reality that inspired me to become an educator that uses technology to create ideal learning environments for individuals who live with such an uncertain future. I have designed a web-learning approach that allows each person to customize what s/he wants to learn and how s/he wants to learn it. Called MSSoftServe.com, it uses techniques supported by learning theory and preferences that can be set to reach each unique individual with MS. This educational tool serves up information as the users want to absorb it – based on their own symptoms and concerns – without exposing them to information they are not looking for that replaces their desire to learn with fear and uncertainty. Or if your approach is more “rocky road” (“I want to know those worst case scenarios”), you can specify accordingly. Whatever the situation, this new way to learn about health on the web is self-directed and ultimately empowering. (MS SoftServe is a non-profit organization currently seeking grants to fund its development.)
~and this is where I left off. More to consider-more to edit …but first, slumber calls. As always I welcome your comments!