Pandemic Darts

Reader, Sophie is full of grace. She's a little lady. She loves to be outside. Really, that's all she wants to do -- to be outside. She loves the trees blowing in the sky. She can't walk as well anymore, but she enjoys sitting on the ground. Her eyes light up when she's outside. There's a lesson there, I know.





I had a conversation with Nice Neurologist the other day about Sophie's resistant seizures. We never really talk about anything else. Sophie's seizure control is okay -- but it really is all relevant. What she endures and what we think is a good day or week or month is a nightmare for others. A friend recently called me for support as she'd found her four year old son under the water, seizing. He'd been taking a bath with his older brother. She called me from the hospital. Her son was okay, but she wasn't. The boy hadn't had a seizure in four years, and she was wrecked. She should be wrecked. There are few things worse in seizure world than the bathtub seizure. Nakedness and thrashing and the water a killer. Yet, he hadn't had a seizure in nearly four years. How have I watched my daughter seize nearly every day (we have had brief periods of total seizure freedom) for twenty five years? More importantly, how has Sophie seized so many times yet loves and lives to be outdoors? While I listened to the panic and horror in my friend's voice, I couldn't help but think no wonder I'm dissociating half the time while Sophie is seizing. I don't really know how I do it. How I've done it. This shit is hard. I was struck by how I know this, yet I still don't entirely rest in it. I still feel agitated or guilty that I'm not doing enough, researching enough, trying to figure it all out. Figure it all out. So, back to the conversation I had with Nice Neurologist the other day. We were in a bar playing darts. He said, What about giving her a pulse of Ativan in anticipation of her bad days? and threw his dart. My turn. I don't understand why that would help? Do other people do that? I threw mine. Well, let me think about it. I'll look into the research, see whether it's been done. He threw another dart. Our darts were all over the bar at this point, a Dilantin hanging off of the seat of a chair, an old-school Diamox wedged into the front of the bar, Ativan dangling from the back of a stool. A guy walked by pulling one out of his neck. Nice Neurologist aims but generally misses. I throw wildly most of the time, but when I really concentrate and listen to what I know, I hit the target. Or maybe it's the opposite. It's only when I throw wildly that I hit the bullseye. No amount of concentration or attachment or expectation improves my aim. There's a lesson there, I know, and it's how I do it.

I don't know why I'm telling you this now. During a pandemic when the whole country is going mad. I guess I'm encouraging you to hang in there. The whole "we can do hard things" mantra. I don't know why, but we can. Lots of people do hard things, literally all the time, for years and years and years. Something is changing, and we have no idea what's happening. I think we need to think wildly and let go of our concentration, our attachments and our expectations. I think we'll aim true that way.

Negative Capability

Several things dovetailed in my mind, & at once it struck me, what quality went to form a Man of Achievement especially in Literature & which Shakespeare possessed so enormously — I mean Negative Capability, that is when man is capable of being in uncertainties, Mysteries, doubts, without any irritable reaching after fact & reason — Coleridge, for instance, would let go by a fine isolated verisimilitude caught from the Penetralium of mystery, from being incapable of remaining content with half knowledge. This pursued through Volumes would perhaps take us no further than this, that with a great poet the sense of Beauty overcomes every other consideration, or rather obliterates all consideration.

John Keats

Challenge Yourself

Call out your peers for making assumptions based on abilities and disabilities. And most of all, be open to deep and meaningful relationships with people with disabilities. Give yourself the opportunity to have friendships that transcend social norms and do it for yourself and the world, not out of pity or saintliness.Let me say that again - not out of pity, saintliness, charity or community service hours.

via Sea Change Ripples

Read the rest here.  

When I read the above post on a stranger's blog, I was reminded of a friend who told me a story of a boy in her neighborhood whose mother asked whether her son could perhaps come over and play a little basketball with my friend's son who had Down Syndrome. My son needs to do some community service, the woman said. He still needs a few more hours. My friend knew that she was supposed to feel gratitude toward this woman and her son, but she didn't. I don't remember what she said, but it wasn't sure, send your son over who has known my son for all of his life but wouldn't spend time with him unless it earns him some hours which, to tell you the truth, makes me think he's a shallow boy with an even more superficial mother. She felt belittled and small and probably overcome by that weariness that sets in when you are reminded, again, of the long road ahead.

When I read the above post on that stranger's blog who is far more intimate with me now than even some of my closest friends for having articulated these shared thoughts and feelings, I wondered if I even had the stamina to do the calling out and to keep it up. I wondered if I'd live the rest of my days -- and Sophie's -- in the steady loneliness that is the result of constantly trying to persuade the world of her worth should it just take the opportunity to see.

Xanthippe, back in the saddle

That's me in my car, waiting for one of my children to come out of an appointment, looking (as Brittany told me on Instagram) insouciant.

Insouciant:  free from concern, worry or anxiety; carefree; nonchalant; marked by blithe unconcern (from the French in - not and souciant - trouble, first documented usage 1799)

Hilarious! I particularly love the phrase blithe unconcern.

Lately, I've thought of myself more as a Xanthippe.

Xanthippe: a nagging, ill-tempered woman (after Xanthippe, wife of Socrates, who was portrayed as a nagging, quarrelsome woman, the word derived from xanthos (yellow) + hippos (horse), first documented usage was 1691)

Being back in the saddle, haranguing insurance companies, driving carpools, staying married and parenting all call for the Yellow Horse, no?

Reader, are you insouciant or a Xanthippe?