My friend, David Hilfiker, is blogging about being diagnosed with early stage Alzheimer's disease (or mild cognitive impairment) at Watching the Lights Go Out. His most recent post strikes me as being one to which many of us with chronic pain can relate. It is about the frustration of having a disease that offers (so far) relatively nebulous symptoms:
"When, in conversation with another person about my Alzheimer's, I mention one of my particularly frustrating symptoms, they'll often respond with something like, 'Yeah, I know what you mean, I've been getting a lot more forgetful, too.'
"It drives me nuts."
He explains that the symptoms this early in the disease do not seem definitive and almost always are not noticed by friends and even, sometimes, family. He, himself, who is experiencing a decline in his heretofore impressive intellectual abilities, can get confused:
"So do I always feel absolutely certain? Well, mostly I do. ... And that little bit of uncertainty makes this difficult disease even more difficult."
At this point, the particulars diverge from those of other chronic diseases, but the subject is still relevant. Take, for example, migraine, or any other pain that is not outwardly manifested. I read a lot of other migraine and pain blogs, and the list of complaints and frustrations are legion. We do not feel understood or accepted; we field comments like, "Well, you look great," that seem to deny our pain; we deal with physicians who have no patience for us when their medications don't work; we endure the upset of others with whom we must cancel plans for the umpteenth time.
And we second-guess ourselves. Is this migraine that bad? Am I being too careful, too willing to give up? Is the pain at the same level it used to be -- maybe it is getting better?
It drives us nuts.
This is the sort of suffering that I have posted about before: the suffering that we layer over our pain. We make things worse with our worry, our hurt pride when we are not believed or understood, our upset at our own confusion and uncertainty, and the way we allow our emotions to overwhelm us.
We don't get to choose what other people say to us or how they react to us; we don't get to choose what is happening within our bodies. We do get to choose how we react to other people; how we are present to our emotions; how we bear with the realities of our disease; whether or not we allow the mind to take over.
That is the end of suffering, when we can let go of the mind's machinations and the ego's needs. Here is what Charlotte Joko Beck says in today's reflection in Open Mind -- Womens' Daily Inspirations For Becoming Mindful.
"Our mind doesn't matter. What matters is nonattachment to the activities of the mind. And our emotions are harmless unless they dominate us (that is, if we are attached to them) -- then they create disharmony for everyone."
Not that it's easy, this nonattachment to something to which we have carefully nurtured our attachment all of our lives. But just being aware that nonattachment is a way out of suffering is a major step. Simply choosing to be aware, that's where to start.
If you'd like other perspectives on suffering and the ego, please click on the word Suffering or on the word Ego in the Labels column to the right of this post. Thank you.
Carol D. Marsh
- With a Master of Fine Arts in Creative Nonfiction degree (Goucher College, August 2014), I am looking at a new phase in my life. From 1992 to 2009, I served as Founding Executive Director of Miriam's House, a residence for homeless women living with AIDS. I left this position when Chronic Migraine Disease overtook my ability to do my job. Now I hope that a writing career will both accommodate the migraines and give me a creative, productive outlet. And soon, September 4, I will launch my Inkshares author page in a bid to hit the 1,000 pre-order goal in 90 days. The book I want to publish is "Nowhere Else I Want to Be," a memoir of ten of my years at Miriam's House.