This past week was MS Awareness week. It’s this week that all of the organizations dedicated to eliminating the disease and supporting the people who are living with it turn up the volume so the rest of the world can hear. It’s got me thinking about the word- Aware.
I recently received an email from someone who was introducing themselves as so many do – with her diagnostic tale. She described her version of MS in reference to how it has progressed to a point that she is aware of it everyday. I immediately paused to consider. It’s an interesting way to establish one’s level of disease impact. So I try it on.
I was diagnosed at 20 years old with my identity still in its pupa stage. As a result MS is an integral part of me. The inseparable fiber of who I am. No matter what my symptoms are on a given day, if I’m breathing I am aware that I have MS. Of course my symptoms make it next to impossible to forget, but it’s much more than that.
It may be because part of my forming sense of self as a young woman was with the knowledge that my future would require an ability to cope. And because there was no way to determine what I’d be coping with, in both the immediate and distant future, I needed to learn to live with the not knowing. I think that was the most difficult aspect to wrap my head around.
In the beginning it showed itself mainly as fear. And not in the productive way that forces you to strategize and plan; but in an insidious way that derails everything. The kind of fear that takes every moment your mind is at rest and fills it with all the worse possibilities in scary detail, often with a dramatic score. (I was in film school after all- theatrics at the ready!)
But as the years went by this fear turned into something else. It had cadence and rhythm. What was imperceptible while in the midst of it, is crystal clear in retrospect. And while I’ve struggled to come up with words that effectively describe it, I immediately recognize it in others who have been living with these two letters for a long period of time.
It’s a verve that underscores our coping. A long history that informs and ultimately empowers our uncertain future. Maybe I would have been that person no matter what my life map looked like. Either way, I enjoy the resilience that I’ve earned. And relish in its constant application to what MS and life in general throws my way.