How do we deal with the pervasive and chronic nature of TILT? How do we escape something that effects every aspect of our lives? How do we think of ourselves separate from it? I don’t mean physically; obviously, if we could physically escape chemical sensitivity that would be very big news indeed. I mean psychologically. Of course there are times when we have no choice; if we are in a health crisis then that is all we can think about, much less act on. But if we can reach a level of relative stability, then patients tend to stock of what is left of our lives and ourselves. At that point, some of us take on projects that make MCS even more a part of their lives. I am both in awe of these folks and very grateful for their efforts, as we have all benefited from their work to collect resources, edit scientific research, and take action as advocates. But not all of us follow that path and I am interested in how all my fellow spoonies deal with the extreme consumption of identification that comes with this illness. The erosion of identity has left me with a large self image problem; I don’t want to be defined by something that happened to me. I feel that in a daily, almost urgent, need to do something that is completely unrelated to this insidious illness.
Which leads me to my Dilemma…
I always have the best of intentions when it comes to the kind of advocacy found on a bigger scale than my daily life provides. I can easily advocate by choosing where I spend my money. I can wear a mask and ask for small accommodations out in the world, essentially getting in people’s faces (which I do in a polite but persistent, Southern lady, kind of way). I can make the consequences of daily exposure a reality in the eyes of my friends and acquaintances. This is all low hanging fruit and I can do that.
But I want to do more. Everytime I check in with EWG or SCHF, I get all fired up to write more letters, send money, volunteer my time at protests or gathering signatures. I have the best of intentions. And then one of a thousand daily negotiations arises. And another and another. And then it’s 10 AM and I’ve already spent 80% of my thoughts/time/energy on dealing with chemical sensitivity. Things I can’t do, things I have to do to survive, a dozen minor health issues that inconvenience or disable me. After all these years (20) it rarely makes me angry anymore, instead it makes me tired. And it certainly kills any kind of fired up.
My advocacy intentions slip away and I am in danger of giving up, or at least, a kind of resigned complacency. For many people, I think the righteous indignation of advocacy saves them from despair. It is a positive productive act of both concern and defiance. I am starting to realize that might not be the case for me. Instead I seem to regain my balance by focusing on who I am aside from MCS. Sometimes I am hard to find but it’s incredibly important to me that I am something separate apart from this illness. There aren’t huge areas of my life untouched by chemical sensitivity but within the right parameters I can just focus on what I have to offer. I can be a good listener for my kids, a good tutor for my students, a nature enthusiast, and amateur gardener. It seems to be an essential coping mechanism for me; those activities make me feel as useful as advocating for chemical substances legislation, but simply as myself, not as a patient.
As so often happens when I write something for this blog, I have treated this post as my own therapy session and worked on a dilemma. In some cynical circles, including those in my head, this might be considered rationalizing or justifying. That’s why I want to hear how others have dealt with this issue since I am obviously not qualified to treat myself. Does anyone else struggle with separating their identify from TILT?