Rants and Silver Linings

A Less Examined Life

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My kids and I reflecting on how I survived a trip to NYC.

I have been living more and reflecting less, which is not necessarily a natural fit for blogging, thus the yearlong silence here. After a decade of living within strict chemical sensitivity parameters and another decade devoting the bulk of my time and energy to pushing those parameters farther away, I had reached a place where I could physically do more. And so I did. I have been working and occasionally traveling in the past year. My activities have been limited mainly by my own restraint since I did not want to repeat the pattern of overdoing it and losing hard won improvements.

This phase of my life has come with some mixed emotions. I am so grateful to be able to DO things. I am angry about the years where I couldn’t do these things which feels like wasted time. I am anxious to push and do more to make up for wasted time (though I know it hasn’t been). But I am also tired from pushing so hard for so long that I am happy to enjoy this phase. Some evenings when I am still energetic and clear headed, even though I have been out in the world doing things, I am amazed that other healthy people might feel like this all the time. If most people feel like this, why aren’t all the worlds problems solved? However, sometimes I indulge in a completely nonproductive activity for hours like reading a book simply because my head is clear enough to do so.

You’d think I would be ready to take on the world or at least my long list of things I’ve missed out on. But I find that two decades of living with some degree of discomfort, dysfunction, or pain has made my assessment of risk different than other people’s. There are so many situations I thought I would be excited to try once I could and instead I am uninterested in the physical discomfort it might bring. Kiteboarding? Fancy restaurant? Music concert? Nope, not worth the sore back, the indigestion, or the late night. Instead I am doing rather mundane things but doing them painlessly which feels like such a luxury.

There are also more and more people in my life who don’t even know that I have MCS, or what that means, much less what my life has (or hasn’t) been for twenty years. Yet, it is and will always be a huge part of my self identity – this thing that happened to me, rather than something I achieved.

Obviously, these are all contradictory thoughts and so rather than trying to resolve them, I’m just letting them go. A less examined life has long been goal of mine. I have been similarly lax about checking in with my online MCS community. I know some patients, who are using limbic retraining as part of their recovery, deliberately choose to avoid dialog, including online support groups. I can understand the need to avoid additional stress of other people’s pain as one heals. That was not my intent; connecting with fellow patients has always been a source of comfort for me. I just truly have spent very little time in front of a computer thinking about my health problems. I have spent time with my health care professionals, my weekly health journal, my kitchen, and anything I can do with moving my body outside – all with the goal of staying healthy. I have spent time with my husband and kids, and with my tutoring students and text books (hello, working brain). But less and less of my time goes to preparing for a situation, recovering from an exposure, or tracking symptoms to isolate a new trigger.

For all that it feels like an impressive recovery, I have no magic cure to share with you. I don’t think this illness has a single treatment that would fit us all. And though I have found a combination of treatments that have improved the sensitivities significantly, I am by no means cured and currently see no way to get there. Regardless, I will try get another post out soon that explains what I have been doing that helped me.

In the meantime, consider today’s post a shout-out to all my spoonies, the MCS/TILT/EI tribe, who are probably feeling even more marginalized in today’s political climate. I hope that you find some measure of healing in the future and some moments of grace everyday.

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4 thoughts on “A Less Examined Life

  1. Hey, cousins! What a wonderful picture of the three of you! It’s been so long since I have seen you, and yet I do think of you often and fondly. Amy, I’m so glad that you are able to do some more things. And these days, with our state of the nation, or at least the “government”, I feel that I, and perhaps most of us, are doing a great thing just not to go crazy! And hey, Gus, Elena and Dave, from a distant cousin who sends you love and fond greetings. Read good books, do fun things and love each other. Much love from Pooh Corner,
    Cousin Carroll

    • Thank you Linda and you are right, we are not widgets! Although I’ve often thought the word is too whimsical for it’s utilitarian meaning:) and we should reclaim it somehow for to mean something fun!

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