EDS Awareness Month 2020: Finding Your Inner Toilet Paper (reassurance when things might not be okay)

I’ll just say it: my mother was a toilet paper hoarder. It’s more interesting and instructive than that, though, and I as I’ve reflected on it, I think it applies to other facets of life and coping with uncertainty and adversity, particularly at times of disruption and upheaval. For this year’s Ehlers-Danlos Syndrome Awareness Month essay, I’d like to examine that (though, sorry to disappoint you, there will be nothing particularly scatological here).

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Reaffirming Purpose Amidst the Chaos

I present you a tale of affirming and reconnecting with my sense of purpose amidst the anxiety and disorientation of all that’s going on. If you’re needing something like that (or at least a ray of hope that it could happen) then I invite you to read on. I considered keeping this to myself but figured there’s likely someone here who needs to hear it.

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Love as Palliative Care

December is for many a time of joy, and one of the most joyous things about it is the glee of young people and, in many cases, the way the milestone of an annual holiday allows us to chart and reflect on their trajectories of growth. While I will invariably experience some of that in the coming weeks, for me the shooting at Sandy Hook Elementary in 2012 forever marred the holiday season. One more specific element of that is that (at the risk of sounding particularly morbid, but I’m just trying to be sincere) I can no longer look at young people without some part of me consciously acknowledging the possibility that they may not grow up. I recognize the privilege that allowed me to make it until the morning of my 39th birthday with that aspect of mortality and frailty remaining an abstraction, but so it went that until then I took growing up for granted. As a result, I have grappled ever since with how to keep my heart open and keep my spirit of nurturing undiminished within that awareness that everyone I know will die and some of them will do so way too soon. It is through this inner turmoil that I began contemplating the notion of love as a form of palliative care.

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Which Voice Do I Obey?

I’ve been thinking about how we all have multiple inner voices giving us perspectives that have varying degrees of present-moment relevance, healthiness, and so on. Listening to our intuition is useful only insofar as we are confident that said intuition is coming from a solid foundation.

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Millet Brick and Pursuit of the Best Self

I have often referred to Kate as my best critic and pointed out how much I enjoy and appreciate that. While that’s true, I think it’s worth some explanation. It’s not that she just criticizes me often or indiscriminately, or that I just perversely enjoy having my flaws pointed out. Rather, I fully trust her embrace of the responsibility to help me be my best self, something that was central to our marriage vows and remains core to our code of ethics as individuals and together and core to my needs from my support structure, especially the person at the center of it.

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Dr. King and the Value of Constructive Obliviousness

Today I am focusing on how the Rev. Dr. Martin Luther King, Jr. modeled for us the hard work in the short run that can lead to dramatic differences in consciousness for subsequent generations. While obviously remembering the struggles our forebears endured is vitally important, my dream today is that by continuing the work, my great grandchildren can be as oblivious to outdated social and philosophical scourges as I am to what life was like without ever experiencing electricity or indoor plumbing.

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Note to Younger Self on PC speech

An open letter about political correctness to my 20 year old self on the occasion of finding a since-shredded copy of his poem “ya figured me out, a**hole” Dear me, First, I really appreciate the spirit behind this poem. I remember how frustrating it was that virtually everyone in your poetry class at Rutgers assumed…

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