Salvage

This week, my aunt and I went to a biopsy appointment (for the suspected cancer found in the mammogram). My aunt's mobility is severely limited by the ALS at this point. Her fine motor skills are mostly gone, her gross motor skills are tenuous and unreliable. We had to transfer between the wheelchair and the car – or gurney – or mammogram stool – about 7 times over the course of 6 hours. And that was about 2 transfers too many. I was pretty livid at the medical staff when they wanted to take "just one more mammogram" after the biopsy "to check the marker."

Nothing is simple when one is essentially wheelchair bound. At the end of the appointment, I used the gait belt to lift her into the passenger seat of my car. She's so tiny and the gait belt, which goes around her waist,  needed so much tightening - and then, still, it slid up her rib cage, heading for her newly created incision... Ack! HORRIBLE! At one point, I glanced up at the car next to us to see an older gentleman transferring much more easily between his wheelchair and the car, and I wondered how long ago that was us. Three months ago were we able to transfer that easily? Or last week? Or just this morning?

It was extraordinarily strenuous and tiring day. 

Without a doubt, I feel that I've been shocked by the way ALS has robbed her of ordinary movement, strength, and balance...but (perhaps more surprisingly) I also feel like I'm really growing a lot in my understanding of disability.

I cringed a bit to write "disability" because I know that advocates like to use the term "differently-abled." But in the case of ALS, which grows progressively worse, it feels important to acknowledge the reductive nature of the disease. 

I'm not quite sure what I will do with my new-disability-enlightened-eyes, but I do hope that I can salvage something from this experience that can help others in the future. Sometimes I find myself surprised by how oblivious society is to disability. Even medical staff can be impressively clueless.  I'm not sure if that reflects a lack of training, a lack of respect, or a lack of exposure...? As far as training goes, I've spent a good amount of time looking at accessibility diagrams and designing "accessibility" into the buildings that I've worked on as an architect, but after having this hands-on experience, I wouldn't pretend that THAT kind of training is the same as exposure and experience. I think as a patient, my aunt often takes other's clueless-ness as a lack of respect, which is understandable, but serves to make her even more frustrated. Among the wisdoms that come out of experience and exposure, is acknowledging there are no easy, simple solutions.

Nonetheless, I wouldn't mind if my future ability to apply these lessons was a little less in the trenches.