The World We Live In

The World I Live In

I have refused to live
locked in the orderly house of
      reasons and proofs.
The world I live in and believe in
is wider than that. And anyway,
       what's wrong with Maybe?


You wouldn't believe what once or
twice I have seen. I'll just
         tell you this:
only if there are angels in your head will you
         ever, possibly, see one.

Mary Oliver, from Devotions, The Selected Poems of Mary Oliver







What's happening here?

Sophie's getting a 48-hour in-home video EEG monitoring. We hope that the IVIG infusions she's been receiving monthly are working to resolve this hideous syndrome. Sophie is strong. I would say that I am, but sometimes I'm not. The tech who hooked Sophie up was the nicest guy. We listened to jazz and talked books. Saint Mirtha is here, making soup. The IVIG nurse was here this morning and had to stick Sophie four times because she's dehydrated. She ordered hydration and that was delivered. I am so grateful for Sophie's life and our strength. I'm grateful for health insurance that allows this in-home treatment. I'm grateful for those legislators that continue to fight the piece of shit that runs our country and threatens to take away life-saving provisions of the ACA that allow Sophie to get healthcare and us to avoid bankruptcy and feel some measure of relief. I know it's not perfect, but it's a grand step in the right direction. Those who think otherwise are welcome to live the life of a person with epilepsy and then the life of a caregiver. I'll train you in both with mastery (meaning you'll forget about supporting that piece of shit if you still do) estimated to take about one month. Guaranteed. If you're not willing, shut up and listen to us. We know how to fight and what to fight for because we have to, all the time.

#healthcareforall
#littlelobbyists
#epilepyawareness
#seizuressuck
#caregiverlife
#wholiveslikethis

It's Not Who She Is

That's a spooky picture, isn't it? Sophie's the white-capped one in the background, lying in her bed. She was wired up today with an ambulatory EEG -- no reason in particular, although I'm interested in seeing whether she's had a return of the dreaded ESES. I think I wrote about ESES on this little blog back in the day -- Sophie had it when she was ten years old and again when she was fifteen. Yet, even as I type it out, I'm doubting that she's had a recurrence. It's not in my gut.

So, ye olde EEG. I remember when the EEG was ink on paper, the electrodes were glued on with an electric gun thing that made a horrible noise, and you needed the same gun and a foul-smelling ointment to get them off. The tech would fiddle with the dials as the ink jets clicked across the paper. It's all a blur, those early days -- a blur into darkness. They still use glue and colored wires that map the brain and record its activity (or fuckery, in Sophie's case) in a little box that you can sling over your shoulder. It's called an ambulatory EEG.

EEG is short for electroencephalogram, in case you're an initiate into The Great Mystery of the Brain. The EEG records brain activity in a moment of time, and in this case will record those moments of time overnight. If one occurs, it will "capture" a seizure.  It also shows the “background,” the non-epileptiform activity or changes, the slowing and spiking of brain waves. Whether Sophie has had a bazillion or no seizures clinically (to the eye), her background has always been abnormal. That’s it. 

Despite the technology, it’s not a complete picture of Sophie’s brain. 

It’s not who she is. 

Every now and then I get a feeling of what it feels like to be accepting. The other night I got Sophie out of her bed where she'd been lying most of the day having had some seizures. I fed her some mashed pinto beans and avocado, and her mouth worked eagerly to chew and swallow it. These are small things, true, but I knew what it was to count them as something less than momentous and more like flow.