It was the best of times. It was the worst of times. Or, well, at least a striking dichotomization of the medical profession.
In September 2011 to deal with the ongoing saga of my tracheal stenosis is, I had minor surgery. A procedure with which I am familiar, I still somehow experienced a vast amount of related stress. In fact, a surprising resurgence of my PTSD caused me to rethink a prior conclusion that it’s under control. Then we had a power outage that pushed the procedure date back five days, so by the time the event arrived, I was a bit overwhelmed.
The first speed bump in the day came when I was told the gastroenterology folks concluded they needed to do a procedure on a different day to assess how my stomach might be contributing to my stenosis, potentially requiring some sedation. Overwhelmed as I was, life became entirely black and white where probably meant would and since anything between fully alert and fully knocked out is terrifying for me, the thought of the whole thing unglued me.
There are some things you might not consider unless you’ve been a blind person in multiple medical situations. Typically, medical professionals do not know how to keep you informed of events around you. Extreme amounts of focus to track events from the data you can gather help, but any kind of sedation destroys essential concentration and memory leaving you wondering what’s happening as you fade in and out. In case it’s not obvious, that kind of disorientation plays badly with PTSD and is why I either have no drugs or get totally knocked out. You also cannot be certain of privacy, who has entered your designated space, or where your nurse went. Therefore, when I was told about the GI decision, I couldn’t curl up into a Miserable Ball of Jen. With hindsight, I know that was for the best, but at the time I didn’t have such clarity.
Then the pendulum swung to the opposite apex of it’s arc as I went into the O.R. Unlike other times, I ditched stoicism and made my mental state clear. Everyone, and the room was populated with people I knew, was great. They did two things exactly right: casually kept me aware of what they were doing and engaged in distracting conversation. It was fine. I was fine. Never thought I’d experience that.
Waking in recovery, I needed oxygen. Without a nasal airway, a mask is the only option. It’s also the most upsetting medical thing I can imagine. But, wait, the Anesthesiology Nurse had a flash of brilliance when she cut a whole in a Styrofoam cup and I used that like a funnel to direct the oxygen at my face. Personally, I’m nominating her for sainthood.
Soon, though, I was smacked down to earth as I listened to the plight of my neighbor. As he came to consciousness, a breathing treatment was being administered. Unable to clearly speak, he still had questions. As someone who wakes up with a few of her own, I could empathize with his situation. I guess Recovery Nurse couldn’t because she politely then not so politely ordered him not to speak. There was no effort made to communicate in another way — no pen and paper offered, no yes and no questions asked, and no reassuring words to explain how his surgery went. Nothing.
From experience, I know how to gesture for pen and paper. I also (thankfully) can write without looking. In his shoes, I could have gotten what I needed to feel safe. Most people do not have my vast experience or coherence upon regaining consciousness. In this man’s Johnny, I would have been utterly petrified.
I’m starting to wonder if my experiences with the institution of medicine as a blind person is simply the result of a continuation of cluelessness. It’s not so much that they know what to do with non-disabled folks, but fall short when it comes to blind people. They just don’t know what to do with anyone.
The notable exception Is obviously the Pulmonology folks and Anesthesia Saint who apparently were given empathy and clue shots along with their new employee orientation.