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.
Hi Amy – I have been reading for a while without commenting. More out of dumb inability than anything else. I am so glad for your strength and your humour and your voice. The fear and the not knowing are everyman (or woman)situations (not to diminish..). The difference with you, is that you have found the “cadence and the rhythm.” I actually think you would have found it no matter what life handed you – some do and some dont no matter who or what..,…. – maybe the MS was the catalyst – I know it is inextricably a part of you – but you are more than your MS – you are more than any label – K? What you have found or was with you always, is GRACE. You are a graceful being my friend. Much respect and love, Julie
I am slowly but surely reading my way backward through your blogs and this one illuminates for me a huge part of our commonality…it’s that we have both incorporated into the core of our lives the acceptance of an unknown future in all its possibly scariest forms. Amazing as it may seem to others, and even ourselves at times, being able to do that empowers us and motivates us and gives us a perpective after 20 years that allows us to live life with a fullness that maybe we wouldn’t have otherwise had. Without htis MS experience, maybe we would have found another vehicle for achieving that or maybe we would have had a different kind of life, but part of our awareness now is that this is our life and we have made it good, notwithstanding the unknowns and the scary stuff. This is what underlies our amazingly strong and intuitive connectedness, this underlies why we understand each other. We didn’t even need to know this about each other to recognize that we’re birds of a feather.
I am so glad we found each other, I value sharing our writings and our lives so very much….and so glad that we can be BFFF even at long-distance!