Self Care Unit 2

I’m sitting here once again in Self Care Unit 2 of Royal Jubilee Hospital (since I came up with the name, I decided to add a number so it sounds more official). It’s Sunday and the unit is nearly empty. Unfortunately, the half dozen people sitting one table over are loud enough that it feels busy. I unfurl my headphones and fire up some deep house music to drown them out. I’m reminded of a roommate I had for a time at Vancouver General, a burly man visited by equally burly friends. They were enjoying themselves but their laughter, as I described then, was like dinosaurs gargling. The group here is just as guttural and emphysemic. I crank the music up and decide that if I damage my hearing, well, at least it’ll be quiet.

It’s a 50-minute walk from home to Royal Jubilee Hospital – a significant walk, sure, but less than the 65-minutes denoted by Google Maps. Beating their estimate by 15-minutes makes me feel like I’m already in great shape, and that maybe I don’t need to exercise as much as I think. Typically, I get my exercise walking to work a 3-4 times a week, and doing a simple workout there at the end of my shift. However, in a bid to care for my overall health, I’ve chosen to take a medical leave from work. Hence, I’ve decided to walk to RJH a few times a week to write or read for the next few months. The walk benefits my physical health; the processing and writing, my mental health. Additionally, I’ll be scheming and plotting a way to get my dream job here as a patient porter. I don’t know how likely that last part is, but I’ve been known to beat the odds – just like The Good Doctor.

In the previous post I discussed how the medical drama The Good Doctor helped me better grasp the shape I was in when I showed up at Vancouver General in an ambulance. The efforts to keep me alive, the complications arising during surgery, the split-second decisions made under pressure – it all feels more real having watched the staff at San Jose St. Bonaventure Hospital. In addition to this greater understanding of my past, the show also helps me with my present, in the character of Dr. Shaun Murphy himself.

To be clear, of course there are significant differences between an autistic surgeon with savant syndrome and a brain-inured maintenance guy on stress leave. Both neurological conditions are infinitely diverse from one case to the next, and comparing the two is like comparing apples and hinges.  One particularly unfortunate difference is that I don’t get to wear scrubs (scrubs, in my mind, are the cotton equivalent to Iron Man’s suit –  maybe I’ll get some for Halloween and be a superhero). Nonetheless, the similarities are also significant and have left me more than a little moist-eyed watching the show. Dr. Murphy, like myself, struggles with interpersonal communication, and has difficulty focusing in noisy environments. Similarly, while I don’t have savant-level intelligence or perfect recall as Dr. Murphy does, I do have a strong sense of art and design, and I know my way around a blog. In other words, Shaun and I are referred to as “high-functioning”, and though this label sounds positive, even encouraging, having pronounced disabilities presenting with notable talents is a difficult place to exist in.

For the past 16 1/2 years (my brain damage is old enough to drive – oh, they grow so fast) I’ve been trying to reconcile these deficits and disabilities with my remaining high functions. My early approach was to deny any changes and challenges altogether. I wanted to declare to my family and friends, “I’m not different! I’m just like other people!” It’s a classic post-trauma response, of course, but knowing this did not make me immune to it. I remember speaking with a doctor at GF Strong and saying, “I know I’d be the last person to know, but I don’t think I have any brain damage.” Despite the somber prognosis of my condition, I focused on the promising results of the many neuropsychological assessments I had at the time. Clearly I’m not disabled, I thought, my spatial intelligence is in the 98th percentile. Unsurprisingly, I deliberately ignored results that suggested difficulty in other areas.

It didn’t take long for this misplaced self analysis to buckle under the accumulating weight of evidence that things were, indeed, different. I was feeling things I’d never felt before; I was stressed, I was anxious, I was confused and angry. Eventually, I conceded that things were different but I figured that with enough time, I would heal up and be as good as old. After all, I wasn’t forgetting my keys nearly as often anymore.

In the ensuing months and years, though I still wrestled with the thought of being disabled, I began to see some benefits to being considered disabled on paper. For example, since it was officially determined that I was “significantly permanently partially cognitively impaired,” I qualified to have my student loans forgivenbonus (but still, totally not worth it). Being a PWD, (Person With Disability) I qualified for a job-training program that subsidized my wage to train as a bike mechanic at The Fort Langley Cyclery. They got full-time work for part-time cost, and I got sweet bikes on staff discount. Even so, I still didn’t consider myself “Disabled” for real. Instead, I considered myself to be “Disabled Lite” and felt a little guilty for gaming the system and reaping perks I didn’t really deserve. The fact that I didn’t qualify for certain aid programs because I wasn’t disabled enough reinforced this notion.

Today, I recognize my deficits and that certain measures need to be taken to accommodate and compensate for them. In order to make best use of my limited cognitive energy, I distill tasks to their simplest steps and streamline every detail. I develop efficient systems and insist that others adhere to these systems. I know this level of specificity is strange, somewhat uncommon, and probably annoying, but that’s the way I work and it’s important to me. I need things this way. When this isn’t acknowledged or accepted, I feel like declaring, “I’m not like other people! I’m different!”  

The truth is I don’t fall into either camp – I’m not entirely disabled but I’m not entirely abled either. I’m very different, and I’m very similar. High-functioning is a spectrum and my position on it is fluid, depending on the task, the skills required, and how much sleep I’ve had. This constant fluctuation affects not only my self-identity and self-esteem, but also the expectations I have of myself and for myself. Some days, in some ways, I’m more than able and the sky is the limit; other days, in other ways, I’m indisputably disabled and it’s only downhill from here. This is the tension of being high-functioning.

 

 

 

 

 

 

 

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About jaybrandsma

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