363. 3rd Yr Status Update: Dizziness


45.  Editing Reality

45. Editing Reality

I saw Dr. Dogan (my surgeon) again when we went to Oregon. I was a lot nicer this time. When he walked in I stood up from my wheelchair to hug him. I stand without thinking/rocking/counting now, and automatically shift my left foot a little behind my right so I get used to placing more weight on it. (J29 charged me to do this, right after she made me play “catch” with her with my right foot propped up so I had to bear most of my weight on my left. I was in the parallel bars but the only reason I agreed was bc that day we had two PT “shadows” who guarded me.) Side note: Thank you, PT!

I had some questions, and he obligingly answered them. He showed me the scans of my brain that day – it was weird. There were b/w images of my head on screen with “April 7, 2011” in the corner. And then I just blurted out – so how much did you remove?

Answer: Dr. Dogan removed a lot less than I thought. Mommy and I have different understandings regarding the level of excision he described, but the bottom line is that he removed a lot less than my notion of what happened. I zoned out while he was still explaining, though, because a new question was forming in my mind. I asked it in my next breath: Well, if most of it’s in there, then WHY is this taking so LONG?!

Hey, I’m just being honest. But he said 3 years is actually not a lot of time. Side note: Turns out he’s also amazingly nice – e.g. he asked how my website’s doing etc. And then he said some stuff about the amount of damage that was done from all the bleeding, that I was in a deep deep coma, and some other things about how cells die when they don’t get oxygen – but I zoned out then, too, bc I was thinking, Hmm…well, I’ll have to write a clarifying chapter in my next book. And I was also busy concluding: it’s just like when I heard that a whole lot of cerebellum was gone – it’s a moot point anyway. The trajectory of my healing is God-directed – the amount and condition of brain matter I’m working with is irrelevant to Him.

I hoped a piece of information like this would make a material shift in my prognosis. I actually avoided any questions about prognosis with Dr. Dogan, though, bc he already saved my life 3 years ago – his job is done. However, I did do some verbal fishing with him and another doctor who cared for me early on – the one who asked, Seriously, could you HAVE any more friends? I tried to give them conversational opportunities to restate my case’s severity, etc. but they held firm. Basically, while I had been hoping for a better prognosis what I got was confirmation that what had happened had been really bad.

255.  Seriously, could you HAVE any more friends?

255. Seriously, could you HAVE any more friends?

I mean, even without any fishing on my part, Dr. Dogan pinched his index finger and thumb together for emphasis and told me, You were sooooo close. There were also some other references to death but I don’t remember them specifically since I was busy plotting my verbal “hooks” and I’m not a great mental multitasker now.

Let me just be clear – N1 told me that a large portion of cerebellum was gone based on my MRI and a report she read to me (probably from the radiologist). Daddy did not contradict her – he just piped up from his corner, in a tone conveying zero surprise, that Dr. Dogan’s priority had been to save my life (and we are all thankful for that). Also, I read an old email of Dad’s detailing a conversation with Dr. Dogan and I thought it referred to excision, but now I know he was referring to how he had to remove the parts that were attached to the AVM. The point is that N1 saw something on my MRI that looked strange enough for her to look again carefully, and comb through the accompanying reports. Her walls are lined with beautiful pictures of her children and pieces of paper from multiple illustrious institutions, and I remain confident in and grateful for her care. This is another example of how the flow of information has been “funny” as my care has been spread over several places on both coasts. But again, it’s a moot point. I have a checkup with N2 in June but I don’t even feel like asking him about this.

On to more interesting topics. Or at least more forward – looking ones. CMD told me that in her experience patients who are dizzy will cease reporting improvement at a certain point in treatment (bc they can’t feel it) until suddenly one day they’re not dizzy any more. That’s how I am. I can’t say that my dizziness is markedly improved. I can say, though, that I know how to manage it better.

I know where the walls are and am constantly identifying pieces of furniture that I could use to break a fall, and I keep my tongue on the roof of my mouth so I don’t bite it if I slip. It takes concerted effort to remain upright, e.g. when I “interviewed” at The Gym I demonstrated my sitting stance for them. See, look – I’m using my core to sit up straight, I told them. Now I’m letting go – Aaah (I immediately fell to my left and added fake screaming like on a roller coaster for dramatic effect).

298.  Somebody - PLEASE just tell me what to do.

298. Somebody – PLEASE just tell me what to do.

If I’m not concentrating I fall. A couple of weeks ago I attended a Chapel Service at the kids’ school. Josh was helping with the flag ceremony that morning and I was thrilled to go see him. It was highly enjoyable – I know EOY activities get crazy but I can’t tell you how wonderful it is for me to watch Hannah and Josh participate. I did not have this chance when I lived in Oregon, and I wouldn’t have this opportunity if I hadn’t gotten sick.

Anyway, after Chapel I fell out of a chair. That I was already seated in. Oops, my bad.

Ai Ai had her back to me since she was talking to a friend . I caught myself so there was no floor contact and congratulated myself on the save and that Boo Boo hadn’t seen me. But Ai Ai’s friend’s eagle eyes saw me and she very calmly and sweetly extended her forefinger slightly in my direction. Is she okay? She asked.

I immediately broke into peals of laughter. Busted. “Don’t worry,” I said. “Happens all the time.” 🙂





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