A lot of time has passed since I last wrote. Finding a blog rhythm is a curious process, writing to no one and everyone . Over the course of my teenage years I kept a diary, keeping track of the trials and tribulations of a troubled teen life that I would soon rather forget than have memorialized. Yet when my life became worthy of documentation, after my diagnosis for instance, my emotional turmoil and the energy required to merely exist was too taxing to document. Although my memory for detail is strong, I long for the specifics that only a diurnal record can really capture– to fill in the dates and details that my brain has glossed over as a coping mechanism.
It is a familiar concept… once life gets interesting we are too busy to seriously reflect on it. As with a recent episode, not having previous experience with the sudden onset of compromised sensory symptoms, I was too busy trying to live through it to consider researching it. Not researching has become my knee-jerk reaction to any MS related issue. In fact after almost 20 years with this diagnosis, I find it hard to imagine what it would be like to have a resource that I can trust. One that allows me to set the parameters. If I were to establish MS SoftServe immediately, I wonder how long it would take to me to work it in to my daily rhythm.
This blog gives insight in to the day-to-day experience of having this disease…on an intellectual level. My thoughts are that by explaining MS to as many people as possible will help a growing community of individuals with MS be better understood. I hadn’t realized that when I set out to share my thoughts on this blog that it could be more than a diary a shared experience. My intension in sending this link to all of my life connections was that many people know individuals with MS and might recommend this site to them.
As I began writing of my experiences it became quite clear that this Life of Learning with MS is also a Life of Teaching. This is no surprise to me as it is a siginificant part of the website I have developed- Learning how to teach others about MS. What I didnt’ expect was that sharing my experiences was a form of teaching. Teaching a little more to people who don’t understand or know what MS is. Giving them insight in to my experience is not only satisfying for me, it is also a good thing for everyone who has been diagnosed –as it will make them better understood and more comfortable.
I was surprised when I began to receive feedback about my blog. I had imagined that once I found an avenue to get the word out, that I would be creating a space to dialogue with people like me who have MS experience similar challenges in learning. So I began by sending out the link to everyone I know with an email address. It seems that everyone knows someone that has MS- or at least someone who knows someone. Six degrees of separation are more than necessary to make that connection. And I did get connected in many surprising ways to individuals who have MS and want to read what I’ve written.
What I didn’t expect however, was how many of my more immediate social contacts would benefit from reading it. Instead of it being a conduit to people with MS it has become something bigger. It is an inside line to a life experience with MS. Some friends and family hadn’t really understood what my MS experience meant. I didn’t realize this was the case until I began to read the feedback. Like the website I’m developing for people with MS and the people in their social web- This blog is for anyone who wants to better understand people they know who have MS and that including people who know me. I return to the overarching goal that the more people who are educated about multiple sclerosis, the more comfortable people with MS will be in their world.
After almost two decades with MS I didn’t realize there was need for more of this level of comfort. I speak very openly about my experience. But, this blogging communication is very different. Having a venue to express my feelings and experiences and then reach out in such an enormous way is truly remarkable. I’m hoping to connnect to an even larger group- those with MS and beyond and continue to teach it forward.