Wednesday, July 4, 2018

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.


  1. All I can say is that I love you and how you love Sophie and how you know who she is from her brain waves to her heart, to her very soul.

  2. I have recently started Ta Chi. Every other class for maybe .5 second I think I have the balance thing only to lose it and have no idea how to find it again. It’s the same with my daughter. Every so often a peace comes over me and I think that I can face what her prognosis could be. Then go back off balance and it’s lost again. Despair.

  3. The EEG has come a long way from the Barbaric way it was stuck into your head with needles, I had one as a young child and it was very traumatic back in those days. So electrodes with even nasty glues sound less invasive. They never found out what caused the episodes I used to have as a Child and thankfully I just outgrew them and they didn't appear to be epileptic in nature after all, tho' still mysterious as to why I ever had them or what they were? I do recall not having 'control' of whatever they were so just glad it didn't interfere with Adult Life like it did with Childhood. I agree that any diagnosis medically is not Who we are and should not therefore define us. The acceptance of Sophie's way of Being is the unconditional Love that we should have of all Beings and I Love that about you, your bond with your Daughter is a Wonderful one and transcends how difficult it all is.

  4. We are our souls, encased in bodies. I don't know why Sophie and Katie are the way they are but I believe their journeys are just as important as anybody's journey. They matter.

  5. What Mary said. She said it perfectly. Sophie is in my heart.

  6. Sickness is a sticky, unglamorous roof to live under. I am sorry our medicine cannot figure this out for Sophie. Talk about accepting, she is a resilient person.

  7. What EVERYONE said... so much love for Sophie’s perfect being.



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