[From November 14, 2018: As I look back through everything I’ve written over this 7+ year period and try to figure out which entries represent each time or season, I see the way I was often looking for examples — something akin to an unspoken mentorship, I guess — of how to do this hard thing. Fortunately, I’ve had some great examples in my life, even if one of them is an overly touchy-feely pastor friend. Ha.]
My friend, Beth, and I have often talked about our weirdly parallel lives, all the more odd because we are/were two vastly different people who just happened to attend a Christian college together decades ago, then both became spouse-caregivers years later, all while making a habit of (sometimes uncomfortably) asking ourselves & each other all of the difficult questions life demands about god and religion. Because the four of us — Beth, me, & each of our spouses — had developed a special kinship based on those those parallel trajectories, when her husband Pete died, I found myself mourning that loss while, at the same time, I was starting to really come to terms with the reality of Chelli’s deteriorating condition. In that way, Pete’s death was a reminder that the trajectory of chronic illness has an undeniable endpoint, a potential parallel I somehow hoped to escape.
Beth wrote a book about the first seven years of being a caregiver to Pete during his battle with MS, which was published only after he passed away. She’s been doing a series of “book talks” in support of the book’s launch. Even though I clearly know the subject — and the subjects — of the book, for some reason, I (foolishly) wasn’t expecting the book talk I attended last night to resonate with me as much as it did. Beth and I have talked about grief a lot, not just since Pete’s death, but while we were both actively navigating Pete and Chelli’s illnesses, too. Living with and loving someone with a chronic, degenerative illness is a life of a thousand small moments of grief, because you mourn each and every loss… of autonomy, of mobility, of pride, of hope. Beth describes it as pushing the same “grief button” again and again. In my experience, that button can become a bit stuck, so that I no longer trust the ability of my grief to remain in proportion to the specific loss of the moment. Missing a planned dinner out becomes a matter of emotional catastrophe, while the latest diagnosis can take a while to even register. My grief is fickle and completely unpredictable.
Our last couple months have provided a noticeable shift in the nature of our shit storm. I’ve spent a lot of sleepless nights trying to ascertain just how much of the latest shift is truly in proportion to the reality of Chelli’s worsening condition and how much of it is my malfunctioning grief button, an understandable result of the sort of emotional exhaustion that begins and ends most of our days.
Whenever Beth visits from New Jersey, there is a moment after she’s been in our home and in our swirling shit storm for a bit, when we inevitably have the same conversation. Beth’s a chronic toucher, much to my occasional dismay and amusement, so the conversation usually begins with her touching my arm or hand, followed by a quick analysis of how things seem to her: occasionally an encouraging “she seems a bit better than last time,” but more often than not and especially lately, an “oh honey, it’s bad.” I guess it’s some sort of shorthand we’ve developed for Beth to instinctively acknowledge the moment, while offering a comforting “I see you” instead of an expectant “how are you?” Maybe it comes from her work as a pastor (that’s a story for another day), but my hunch is that it’s borne of her history as a caregiver, with a caregiver’s needs: acknowledge the uncomfortable, validate the pain, look it square in the eye, then simply offer love without expectation. You’d be amazed how many people are unable or unwilling to do that.
If there’s any one thing I would almost universally encourage you to do for that person in your life who is living with/through one of life’s great storms — an illness, a death, a loss of relationship or job or pet or hope — is to have this sort of simple conversation of acknowledgment. Be willing to look them and their pain in the eye, touch them if you must, and say simply, “I see you. You are loved.”
Find Beth’s book here: https://a.co/d/j0lLT4s
Sometimes I ramble. 