The Gentleman

October 27, 2020

I’m a mother to a child with medical complexities, and the problem is this: I’m tired of feeling like I’m surviving, or enduring, but rarely thriving. So, I paid $200 and signed up for a 15-week wellness program out of The University of Michigan for parents of children with special needs. This evidenced-based program, “Mood Lifters,” is modeled after Weight Watchers. This means, instead of a focus on losing weight, weekly goals are set and points are earned within the categories “body, actions, mind, mood, and relationships.” I intend to blog about my experiences with each weekly topic and it’s my hope, by the end of this project, thriving won’t seem quite so elusive.

Weeks 5 & 6: Emotional Awareness

Goal:

In addition to earning points in the categories of behavior, mind, sleep, and social (connections), my goal is to practice emotional awareness through an emotion tracking chart & engage in helpful strategies for managing negative emotions. The following essay is a product of my efforts thus far.

The Gentleman

At my first and only epilepsy support group meeting, the facilitator spoke to a group of individuals with epilepsy, or those who care for and love someone with epilepsy, about how a breakthrough seizure ignites a cycle of grief. Nora was 6 months old, and she had been diagnosed with intractable epilepsy, so based on the grief cycle premise, one thing was clear: intractable epilepsy, or uncontrolled seizures is a perpetual cycle of grief. And from everything I understand about grief, at its core, it’s sadness.

When I attended a grief session, at the Aicardi syndrome conference, with other families struggling with intractable epilepsy, the facilitator compared grief, or sadness, to a large rock. He shared several approaches to living with this rock — he said to picture a terrarium, filled with moss, earth, blooms and insects — and, yes, the rock. His point was this: we cannot change our loss, or sadness and grief, but life can grow — bloom — full and abundant things around perpetual sadness. I suppose I prefer intractable epilepsy and its cycles of sadness buried deep in a neglected terracotta pot — unseen and unreachable beneath cacti and spikey succulent foliage.

A few months ago, I asked my psychiatrist about ways to navigate the long-term effects of caregiving, chronic stress, and in some ways, sadness, but I didn’t use that word — not with him (and not with anyone if I can avoid it). The psychiatrist offered solutions: medication and lifestyle shifts, and then he said something Annaliese recently told me too: “I worry about you.” And while it might have been his way of initiating his proposed treatment plan, the reality was this: I was worried about me too. Because from where I sit, there is nothing more exhausting, and numbing, than ignoring perpetual sadness.

Annaliese came over last night with arms and boxes full of flowers and foraged foliage: my first flower arrangement lesson. But then — a seizure for Nora — a short scream from out of sleep, followed by a cycle of seizure spasms. Oxygen was administered, rescue medication was eventually given, and Nora drifted peacefully back to sleep. I joined Annaliese on the patio, where she was throwing a ball with Everett. I didn’t have the words for what I was feeling, but one thing was clear: my emotion was under the umbrella of sadness, and it was making me uncomfortable. So we put words to it. I gave the emotion a name: “something like despair.” As it turns out, unearthing sadness is almost as exhausting as burying it, and it was Annaliese who did what simply had to be done: she began arranging beautiful things around sadness. It started with a verbal gratitude list — I chimed in with an appraisal, “thankfully Nora has a new rescue medication on board — we’re doing everything we can.”

When we began to create a floral arrangement, Annaliese explained how it is essential to allow each stem a voice and space — “each flower has something to say.” We arranged and rearranged green foliage, velvet magnolia leaves, pampas grass, and white roses. When we finished, we agreed, it was a masculine arrangement— sophisticated, and structured — all but the feminine, soft and romantic white roses which made the arrangement all the more mannerly, and for this, we named him The Gentleman.

When it comes to managing emotions, like sadness, I was told by my wellness program group facilitator, “emotional awareness is half the battle.” The other half of the battle is knowing what to do with the emotion. So today, as I sip my coffee, across from The Gentleman in all his glory, bursting with white roses and deep velvet magnolia leaves, I choose to respond to sadness as I would if I were hosting a guest, “Good morning sir! What will the day bring us?” Because, like a stately gentleman at a kitchen table, sadness and all its nuances, is not to be ignored.