Category Archives: It Happened To Me

Riding The Bus With My Dog

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Ever wonder why bus drivers need to announce *every* stop? Here’s a great example.

To conserve energy so I could attend a yoga class, I decided to take a bus one way to the vet’s office. As usual, while swiping my bus card I told the driver my destination. After sitting down, I pulled out my phone to monitor the street numbers as they passed. My first mistake was in putting the phone away just before my destination.

The driver did announce all the stops, which had me convinced she would also indicate the one I needed, even if she forgot I wanted it. That was my second mistake.

She didn’t announce my stop nor did she stop. When she announced the stop after mine, I called to her, “I wanted 39th?” I think her response was simply saying she’d gone past.

When I got off, I inquired, “How many streets back is the stop I wanted?”

“You should cross the street and take the other bus back,” she replied.

“Don’t have time. Do you know how many?”

“Two or three maybe. Sorry,” was her answer, with the apology covering either her lack of knowing or her mistake or both.

Armed with this wealth of information, Camille and I began walking. About the time I reached the second intersection, it dawned upon me that I would need to cross either on or off ramps for a highway. Having never done that in my entire life, I was a bit…. concerned. With a crosswalk and light, it was probably one of the safer ways to cross an off ramp, but without an audible signal, it was still daunting. I spent a long time listening to the traffic pattern trying to figure out how you timed things.

I have to say that my little black dog was awesome. I might have been flipping out, but she was a total pro.

And then we had to do it again on the other side of the overpass.

Bus drivers are suppose to announce *all* stops whether they pull up to take on or disgorge passengers precisely so that blind people can get off where they wish. This driver’s mistake put me in a pretty unhappy situation only mitigated by the fact that my dog is good at her job.

Ears

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I welcomed the new year in with double ear infections – both sides, inner and outer. First, in defense of infants the world over, I have only felt that intensity of pain once before when my appendix was about to rupture. The ear pain had me curled in a ball on my living room rug at 2:00am begging the universe to make it stop. Sobbing. Loudly. Babies, in my opinion, should scream louder.

Along with the pain, I lost significant amounts of my ability to hear. I could hear someone on the other end of the phone, but not someone standing next to me. I stopped being able to perceive the noise of my fridge for about three weeks. I was unable to walk in a straight line inside my own home. I couldn’t hear if the pot of water on the stove was boiling or not.

As you might imagine, this was a life complication. Once the pain was under control, it took about 48 hours for my brain to say, “Hey, we can navigate the outside world. Camille’s good at her job. You should be able to hear audible crosswalks. AS long as you only go to places you know…..” Around then, I stood up and the room started spinning. “Okay, maybe not if I’m experiencing vertigo.”

Once the dizziness passed, that’s exactly what I did – went out and navigated familiar places while my hearing was limited. I’m still stunned at myself. Not amazed. Stunned.

What attitude or approach achieved this … result? This is a new adventure. Wonder what it will be like. Wonder what I’ll learn.

I credit this mindset to my December reading of Crashing Through written by Robert Kurson telling the real life story of Mike May’s adventures in going from totally to legally blind. Perfectly content as a blind man, he was presented with the unexpected possibility of regaining vision with a new medical procedure. The book chronicles his decision and subsequent experiences.

To boil it all down, he did it to – excuse the pun – see what it would be like. I was presented with a perceptual change and decided to embrace it as an experience. It went well.

two months later, I have most of my hearing back, but they aren’t sure everything will return. The nuanced auditory input I use for things like “Where did that thing land when I dropped it?” is effected along with trouble discerning traffic patterns, identifying the location of an open doorway and a few other things.

I’m pretty much done sucking all the learning and experiencing out of this adventure. Fingers crossed that the steroids work.

Misery, Desperation and Nightmares & Dreamscapes

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From Charles Dickens we move on to something reminiscent of Stephen King. After the events in , I had two doses of anesthesia and from a PTSD perspective, everything went well. In fact, by the third procedure in October 2012, I was starting to feel like it was a routine event. Totally and dramatically wrong. A failure of imagination as well as not attending to multiple warning signs are the only explanations I have as to why I was …. blindsided..

First, there was the orderly who thought I could see and was surprised I was sighted. Then there was the O.R. nurse similarly uninformed and also not aware of my lack of a nasal airway. There was then a floating nurse who thought I could see. Three in a row should have raised my suspicions, but I explained it away as a lack of charts being read with any care at all.

Next there was the anesthesiologist who I’d encountered before. He wasn’t my favorite, but nobody can live up to AnesthesiaSaint mentioned in the previous entry. However, when he asked what music I’d like to hear, I told him and he IGNORED ME, I should have paid better attention. When he continued to disregard most of my requests for how I wanted him to interact with me, there should have been red flags doing the cha cha in my head. Not knowing I’m blind is one thing. Totally ignoring what I want is another case altogether.

I came out of anesthesia and was told, “We are moving you to your bed now.” They didn’t give me a direction, which is typical for people who don’t know how to behave around a blind patient. I went to ask, “Which way?” and discovered I couldn’t talk well. There were sounds I was unable to make. I tried asking the question in other ways, but was more or less ignored. So I tried all the nonverbal communication skills I know, including trying to fingerspell, which is when I realized my right arm was fairly numb and unresponsive. I started getting pretty agitated. Nobody really did much to sort it out. I was the man having the breathing treatment who was shot down when he tried to get the reassurance he needed. My brash proclamations that I had the skills to handle such a eventuality crumbled in the face of medical staff unable to notice that I was communicating.

Finally, I managed to get across a need for pen and paper because I found ways to express the concepts using sounds I could utter. I demanded my doctor. It took extreme insistence to get him.

My awesome, amazing TracheaDoc was not prepared for the situation and handled it suboptimally. He had no idea I had just experienced enough trauma to take my PTSD from “mostly managed” to “completely out of control.”  That’s because doctors aren’t educated on such things. Unfortunately, in this one way, he turned out to be like other doctors. Guess he’s not superhuman.

He did share one crucial fact – the paralytics used in surgery hadn’t worn off and my vocal cords were effected. Also, the blood pressure cuff had cut off my circulation. I pretty much cursed him out saying he’d better be right or else with a few tears managing to escape.

You know what? I’m extremely proud of myself for not losing it more than I did. The circumstances of this situation could not have been better for triggering my PTSD if I’d picked them myself and went beyond anything in my most vivid nightmares. If the events had been described an my opinion as to my probable reaction sought, I’d have predicted screaming, yelling, throwing things and behavior likely to get you sedated and put into a padded room. Instead, I had a fairly understandable response.

Or, well, to me understandable. I don’t think the sighted medical staff had that perspective. I’m concerned about what my medical chart now says. I’m looking at surgery in the next month and the thought is… not pleasant.

A Tale of Two Extremes

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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.

Blind Self Defense

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A local community group of and for blind and visually impaired people offers a free self-defense class to those with vision loss. To encourage myself to try more adventurous travel, I decided to attend. I’m going to attempt an objective re-telling of events.

First, I called to find out how to reach the location. I was asked, “Do you have any usable vision?” I replied in the negative. “Then just call us when you are at the corner and we will come get you.”

Being me, I thought, “Screw that” and tried to find the place on my own. I failed and resorted to calling. I was told the woman would “Throw the harness on the dog and be right there.”

A man then pulled up and confirmed I was going to the place in question. “I’m here to give you a ride,” he said.

“I’m not getting in the car of a man I don’t know,” I flatly and rather emphatically stated.

“Then how will you get there?” he asked.

“Um, walk.” I answered.

“Turn right at the first driveway,” he said and by subsequent lack of presence I determined he had left. He did re-appear about when I needed to turn and directed me inside. I did not enter the building until I heard the sound of other people.

After leaving my guide dog leashed to a chair – standard practice in such a situation – I took my telescoping cane and went to the spot I was directed to occupy. It is all the way across the room from my dog.

Someone then asked me, “Why do you have your cane?”

“So I can walk places,” I replied.

“You don’t need it. We’ll take you wherever you need to go.”

“Um, is it a problem for me to have it?”

“It might get in the way. We’ll just put it by your jacket.”

“Uh, okay.”

Class happens. At the end, I need the restroom and am given directions that include, “Use your echolocation to find the first hallway on your right.” I don’t really have great echolocation, but I did find the hall with my dog’s help.

Upon leaving, I asked which way to turn once I exit the building. I was told right and I tried that. It led me to a trash can, poll, and bush. I went back inside and inquired, “Go right immediately outside the door? There was a bush and stuff.”

“Just tell your dog to go right.”

I did that. The nice mailman had to help me get to where I needed to go.