Current “Normal”: Knowledge, Acknowledgment, Acceptance (Alternative Subtitle: Ramble, Ramble, Ramble)

Since starting a neuro day hospital program last week, I’ve been making a renewed effort to accept that there are things that I can’t change about the current state of my brain.

This isn’t to say that I’m not being as active a participant as I can be in my recovery process. On the contrary, I’m doing everything in my power to move towards the future that I envision for myself. Indeed, some people in my life (my husband, select medical professionals) argue that I’m pushing myself too hard, using as evidence my increased seizure frequency, increased episodes of confusion, and exhaustion, along with other signs that I’d rather ignore. Being unaware of my limits makes it much easier to keep pretending that I’m closer to pre-surgery, pre-ABI me than I truly am.

This version of reality—the one to which I cling in moments of insecurity, the one in which I can work as hard I want to, without repercussions for my health—is more appealing than the variant that’s being revealed, piece by piece, as I complete assessments with my PT, OT, and speech pathologist at the day hospital.

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Time for another day of discovering what’s wrong with me!

In the interests of worsening the relatively good mood I’m in despite my “challenges”—you know what they say: when life gives you lemons, make yourself an enormous jug of self-pity—I’ll give a few examples of the results of the assessments that I’ve done up to now.

I’m gonna divide the following into several paragraphs. It just feels right, and I’m trying to listen to my heart these days.

First, there’s the physical. While I thought that my left side was approaching its own special version of old-normal, I’m told, for instance, that there’s a forty-pound differential between my left hand’s grip strength and my right hand’s grip strength. (The difference between someone my age’s dominant hand and non-dominant hand is usually ten pounds.) Indeed, my left side has proved significantly weaker than my right one in almost all of the tests that it’s performed thus far. Because of this weakness, in combination with my lack of endurance, my OT and PT have suggested that, for the time being, I start using a walker when I go out by myself, in part so that I have somewhere to sit when I need to rest. More about this next time, but if you read my previous post, in which I extensively complain about continuing to need a cane, you can probably guess that I’m not elated about the walker idea. That said, it has a basket large enough to hold my purse, a case of Ensure, and an economy-size box of digestive cookies, so it could be worse. #silverlining

Next, there’s my memory. On Thursday, I spent my hour-long appointment with the OT doing a memory test. Appropriately, I can’t remember what it was called; I can, however, remember that it didn’t go very well. Before we began, the OT explained that I might score in the normal range, but that since my memory may have been superior before all this happened, a “normal” result wouldn’t mean that my memory hadn’t been affected. Smiling and nodding as she gave her little speech, I was deeply aware that I was about to disappoint her. I was also simultaneously nervous and a little satisfied that the compensatory strategies that I’ve developed to come across as less scattered and absentminded than I am have paid off.

Once we’d finished the test, she told me that it’ll take a while to score, so I’ll have to wait until next week to hear the specifics of how I performed. She then said that there was no use beating around the bush: my memory is impaired, perhaps “severely” so. Though I could’ve predicted that I wouldn’t be in the “normal” range, the perfectionist within couldn’t help but be a little upset. Maybe I’ll acquire the answer key and devote myself to memorizing it so that I can ace the test the next time around. #notthepoint

I’m happy that these evaluations are being carried out by incredibly friendly, competent, and sympathetic professionals who do their best to highlight the progress that I’ve made rather than dwelling on my remaining deficits, all while remaining realistic about how much work I’ll need to do in order to get back to a level of functioning that will allow me to return to work, be fully independent, and all that good stuff. Despite being annoyed not to be getting a score of 100%/A+ on everything that I do in rehab (all of life is an opportunity to be graded, right?!?), I’m grateful to have more information about what the state of things is. As the saying goes, “knowledge is power.” (I feel like I should buy a motivational poster from the 90s featuring this maxim and an image of a kid holding a globe in one hand and giving a thumbs up with the other and tape it above my desk. Just, you know, as a reminder that knowledge will make me a better person, or something. And also as a reminder that I should start a collection of motivational powers from my favourite decade. But I digress.)

For me, often what’s trickiest is figuring out how to truly acknowledge the knowledge that’s thrown at me during health appointments. I tend to blow off information regarding my condition when it makes me uncomfortable, sad, and/or angry, minimizing it, which, in turn, leads me to push well beyond my limits in a bid to prove to myself, and to others, just how “normal” I can be.

The thing is, I can’t be, at this point in my recovery. Totally normal, that is (let’s be honest, though; who is?). This is a lesson that I seem to have to relearn over, and over, and over again, especially in the evening, when I’m tired from a long day of exerting myself as I try to seem as unaffected by my brain stuff as possible. Don’t get me wrong: this is a fantastic skill when executed properly. However, nine times out of ten it has negative implications for me, such as a seizure, confusion to the point that I make a wrong turn on the five-minute, straight-shot walk home from the coffee shop, or heightened agitation. And the list goes on.

Recovery-wise, a big part of my latest bid to fix what I can and start to accept what I can’t has thus been to acknowledge the information gleaned from the assessments that I’ve been doing at the neuro day hospital for what it is: in sum, my current normal, a baseline, not something to be ignored because it a) isn’t convenient for me (but I wanna sign up for a triathlon now!) and b) doesn’t always make me feel particularly good about myself (but I want to progress in a satisfying career at a typical rate, even if I’m having many seizures a week and am recovering from a brain injury!).

While I hate the term “new normal,” I’m able to take comfort from “current normal,” likely because it implies that more change is on the horizon. Now that I’m getting into the swing of things at the day hospital, I’m looking forward to continuing to work hard to get back to my “optimal normal,” collaborating with my health-care providers and taking care of myself during my off-hours so that I can get the most out of the program and avoid further brain traumas.

Man, neurons are tricky business.

 


 

An aside: if you haven’t yet “liked” De Morbo Sacro‘s Facebook page, please consider doing so. You can find it here. OK, end of gratuitous self-promotion.

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