Sophie fought from the very first moment. I can't count the number of EEGs that we've put her through, but this might top them all as the worst or the one that she fought the most. Maybe it's because she's on fewer drugs and has more wherewithal to protest. Maybe it's because she's even more sick of it all than I.
Reinforcements were brought in. This is Rosie, The Reinforcer. She put her arms in braces so she couldn't flail or hit us with them. I would have cried, but instead I made dark and bitter jokes and alternated with murmured words of comfort to Sophie even as I pressed my fingers into her tiny hands and lay my legs across her lap.
They got the job done with my help and an extraordinary effort by Oliver. If I even began to tell you how much Oliver helped us, I might dissolve into a puddle of tears.
I hesitated to put these photos up -- even on Facebook, which I did last night. Then I decided that it'll only increase awareness for how miserable this disease is for not just Sophie, but for all the kids and adults like her, for their siblings and for their parents. My fellow epilepsy peeps -- I'm not sure how we do it, but we do it.
I am perhaps going to exist forever on the samsara wheel that is epilepsy because I hate it with all my heart. I hate all of this shit. Resistance comes and goes, and yesterday, it came.
Oliver asked what we were going to do with the information gathered by the EEG.
I said, Nothing.
A friend texted me this question:
I swear there have been no advances in the technology of neurology in forever. why the fuck do they not have a better way to do this yet?
I don't have an answer for that, and Spock died last week at the age of 83.
Sometimes, if I'm lucky, despair morphs into anger and then humor. Last night, I lay on my side in front of the video EEG monitor and noticed that Sophie looked like a saint, and unlike all other cameras, it actually made me look thin and even exotic.
Not to mention, terrifying.
I don't know what to say except Sophie does look like a saint and you look thin. Scared is an appropriate look.
ReplyDeleteBest,
Bonnie
Bonnie -- Thank you for the thin remark! I'll take it! :)
DeleteThis made me weep.
ReplyDeleteWhen we were in the hospital last November and reduced Annika's meds to make her have seizures - and she had 3 big tonic-clonics within 12 hours - I said with what other disease do they actually need to induce the horrible violent life-threatening symptoms in order to diagnose it. And if they don't get enough info from the other studies we are doing now, we will do that all over again, but this time with electrode probes inserted in her brain. All of this for the "hope" (and for those of you who are happily ignorant of the reality of epilepsy, it is indeed our fervent hope) that she will be eligible to have the offending piece of her brain removed through a massive surgical procedure.
Our family only been dealing with epilepsy for 18 months and I hate it violently. I can only imagine the depth of your hatred.
Kira Gartner -- Thank you for being a witness. And I wish you all the luck and healing thoughts one can have as you move forward with Annika's treatment.
DeleteQuite frankly, I believe that as with all medical concerns, when the procedures and treatments far lag behind the benefit, I say stop them.
ReplyDeleteThis is a sort of hell for all concerned and illustrates all too well how far we need to go in the treatment of this horrible illness which you have opened my eyes to.
Ms. Moon -- At best, it'll be INTERESTING to see what the EEG tells us. I believe that her underlying dysfunction will be the same. Clinically, though, she's dramatically better, and that's all I care about.
DeleteIf the info isn't going to help then why do it? Just wondering.
ReplyDeleteNext week Katie sees the dermatologist and I'm dreading that. I do push for a biopsy? If it is melanoma and it spreads and kills her, how will I cope with that?
Nothing is easy in disability land. Sending hugs.
lily cedar -- First of all, I'm sending healing thoughts and good wishes to Katie and to you for next week's dermatologist visit. I have no idea whether I'd push for a biopsy or not. I have no doubt, though, that you will do what's best for your beautiful daughter. Nope. Nothing is easy.
DeleteI just realized how incoherent my comments was. Oh well. You get the drift:)
ReplyDeleteIt believe it is an enormous and brave thing to post these pictures. I thank you and your family for this.
ReplyDeleteSabine -- Just a bit of a dose of reality.
DeleteToo much of medicine is like torture.
ReplyDeleteA -- I know you understand. I was at my wit's end, which I think has more to do with longevity than the immediate circumstances.
DeleteWe should have another EEG....but for all the photos above, I have put it off. Max hates them, we hate him having to go through with them.
ReplyDeleteDeana -- I regret doing this one, but we hadn't done one in nearly five years, and I didn't expect it to be this hard. Hopefully, we'll never do another.
DeleteThis is so disturbing but necessary for people like me to see. I am sorry Sophie and your family have to go through this. I am curious if any changes are seen after the marijuana use? Or is that a dumb question?
ReplyDeleteJoanne -- I won't know "results" until next week when I turn the box in. I don't expect there to be much change in Sophie's "background," which is her general brain dysfunction. What matters to me is her clinical presentation, and I already know that she's dramatically improved with cannabis.
DeleteOne of the things that I hated most in my childhood and adolescence--I am sorry that Sophie and your family still endure these.
ReplyDeletee -- I imagine it's still the same, no? The technology? The only thing different from twenty years ago is that the EEG is on a computer and you can walk around with the electrodes glued to your head.
DeleteActually, back when it was done on me, I was forced to lie still on a table in a cold, dark room. No walking allowed...
DeleteElizabeth, I really appreciate that you've let us see this piece of your life with Sophie. I'm sorry and sad that at what you've all had to go through. Hold on tight to the reality that Sophie IS better despite what the test shows. Sending love, love, love.
ReplyDeleteThanks, Denise.
DeleteNo words. Just love.
ReplyDelete37paddington -- You are so sweet to be here reading. I'm thinking of you.
DeleteMaybe this will be the last one. It seems hopeful that she is aware and fighting. I admire her.
ReplyDeleteKim Andersen -- I sure as heck hope it's the last one!
DeleteWas this a 24-hour EEG involving an overnight hospital stay? We did that sort once many years ago. The rest of ours have been the one-hour version. Do you ever do that one? C. lets me off easy with absolutely no resistance.
ReplyDeleteIsn't it odd that the neurologists keep ordering these EEG's even though they give far more weight to clinical symptoms.
Hoping this one brings you encouraging results.
P.S. That birthday photo of Sophie is simply gorgeous.
The Sound of the Silent -- This was a 24-hour ambulatory EEG, meaning you get to leave and go home. You're pasted up with the electrodes, and you leave with the computer and the video monitor. After twenty-four hours, you take the electrodes off, wash the glue out and bring back the equipment with the recording in it for them to read.
DeleteThanks for clarifying that. I've never heard of this ambulatory version. It sounds nifty but I have a hunch they aren't on offer here. Something for me to inquire about.
DeleteCould you refuse the EEG if it's probably going to be of no clinical benefit? I'm glad you explained how it works because I was confused too. I'm also glad you posted the photos for the sake of awareness.
ReplyDeleteI can't even imagine, although I can feel the tightness in my chest and stomach as you describe it. I am breathing deeply and surrounding you all in light and I am so glad it's done now. Wouldn't it be wonderful if there was some magnificent finding that came out of it after all these months of benzo-weaning and CBD oil? It might just ease some of the shitty residue from the struggle.
ReplyDeleteThose photos were heartbreaking to look at, but important to share. Thank you for the window.
ReplyDelete